Epilepsy Related Conditions

Epilepsy Related Conditions | July 29, 2020

In chronic conditions, such as epilepsy, the coexistence of more than one illness in a patient is the rule rather than the exception…

Men and women with epilepsy have a two-to five-fold increase in the occurrence of conditions, such as migraine, cerebrovascular and cardiovascular disorders. Along with gastrointestinal disorders, pulmonary disorders, dementia, chronic fatigue, mood disorders, anxiety, and personality disorders.

The type and prevalence of conditions is largely age dependent.

For example, among epilepsy patients, asthma is common among the young, while cardiovascular diseases and stroke are prevalent in older individuals — but both occur more frequently than in the general population.

Below is a sampling of some of the conditions which are related (but not necessarily caused) by epilepsy…

Epilepsy and Heart Disease

The neural activity that accompanies seizures has long been known to affect cardiac functioning. But in patients with nonconvulsive types of epilepsy, these secondary symptoms may be misread as the primary illness.

Five specific cardiac problems have been linked to epilepsy: irregular heartbeat, anginal chest pain, pulmonary edema, symptoms of a tumor linked to hypertension — and sudden death. This is because the areas of the brain affected by epileptic episodes are linked to the hypothalamus, the section of the brain that affects the autonomic nervous system.

People with epilepsy are two to three times more likely to suffer sudden death than the general population. Up to 30% of those deaths cannot be explained. Doctors suspect epilepsy-related cardiac troubles as a major cause due to death of the muscular tissues in the heart.

Diabetes

A diabetic seizure occurs as a result of a burst of simultaneous, contradictory signals from brain cells. There are many causes of seizures including head trauma, fever, illness. Hyperglycemia (high blood glucose) and hypoglycemia (low blood glucose) both can cause seizure, convulsion, coma, and even death.

People with the tendency to have seizures are more likely to have one triggered by fluctuations in blood glucose levels. Persons with hyperglycemia tend to have focal or local seizures, whereas those who are hypoglycemic, tend to have tonic-clonic seizures, also called a hypoglycemic-induced seizure.

Infection

A seizure complication of infection can consist of a single seizure or can go on to become a chronic epilepsy. Seizures can arise as an acute, subacute, or long-term consequence of an infectious state. The type of epileptic complication and when it arises depends on the nature of the infectious illness, its duration, plus the type and extent of damage to the central nervous system.

Inflammatory Disorders

Inflammatory disorders are characterized by their systemic effects. The immune response to these illnesses may cause dysfunction in tissues other than the typically affected organs.

When the central nervous system is involved, a wide range of neurologic symptoms occurs, including epileptic seizures as well as headaches, confusion, and coma. Seizures or other neurologic abnormalities sometimes may be the initial or even the only manifestation of a systemic inflammatory disorder.

Migraines

These headaches, with no identifiable underlying cause includes migraines as well as tension-type headaches, cluster headaches and a number of rare disorders. It is analogous to idiopathic epilepsy and individuals with one disorder are at least twice as likely to have the other.

Sleep Disorders

Sleep disorders are common, treatable conditions that frequently coexist with epilepsy. Understanding the relationship between epilepsy and sleep disorders is important for optimum results.

Treatment of a coexisting sleep disorder may improve seizure control, daytime alertness, or both. However, sleep disorders such as sleepwalking, nocturnal panic disorder, excessive daytime sleepiness, may actually mimic epileptic seizures.

What is Your Disorder?

You may, yourself, suffer from an epilepsy related condition. The names and numbers of these illnesses are vast. If there’s something I’ve omitted which you would like to include, please, feel free to chime in!

To subscribe to Epilepsy Talk, simply go to the bottom of the right column, enter your email address and click on “Follow”.

Resources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2096724/

https://www.thediabetescouncil.com/diabetes-and-seizures-what-are-they-what-are-the-symptoms/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2728482/

https://www.ncbi.nlm.nih.gov/pubmed/21518343

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977596/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3378051/

http://www.columbia.edu/cu/record/archives/vol20/vol20_iss16/record2016.15.html

https://sleepfoundation.org/sleep-disorders-problems/disease-and-sleep/epilepsy

http://www.epilepsy.com/learn/impact/sleep-and-epilepsy/sleep-disorders

Posted in Epilepsy, Research
Tags: diabetes, epilepsy related conditions, heart disease, infection, inflammatory disorders, migraines, sleep disorders

93 Comments »

To me seizures are a form of death. Each and every seizure I wonder is this the big one, my last seizure ever.

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Comment by Zolt — July 29, 2020 @ 10:47 AM

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- I think we all walk around with that cloud hovering overhead. Afraid that the next seizure may be our final one.
  
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  Comment by Phylis Feiner Johnson — July 29, 2020 @ 10:57 AM
  
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[…] Epilepsy Related Conditions — Epilepsy Talk […]

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Pingback by Epilepsy Related Conditions — Epilepsy Talk – Epilepsy & Cerebral Palsy — July 29, 2020 @ 12:10 PM

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You know these things and now, thanks to you, I know them as well. My regular doctors, however, have not known. In most cases, it’s been “treat the symptom” rather than the underlying cause.

I suspect that people with epilepsy have more hormonal disorders than the general population. Diabetes and some forms of insomnia are just two.

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Comment by HoDo — July 29, 2020 @ 12:20 PM

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- Yes it makes me wonder if that’s why the gastroenterologist can’t seem to figure out what is happening to me now and why I get the MOST NASTY STOMACHACHES FOREVER AND A DAY!!!!!!!
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — August 20, 2020 @ 9:11 PM
  
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Band aids seem to be a popular solution. Maybe to cover the misdiagnosis, laziness or just plain stupidity.

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Comment by Phylis Feiner Johnson — July 29, 2020 @ 12:24 PM

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Two weeks ago I spent 12 hours in the ER with “status eplilepticus,” but I can’t always tell the difference between a seizure, a migraine, extreme fatigue, or ??? My epileptologist and neuro-oncologist are now in disagreement about whether to order an ambulatory EEG, where I would be hooked up and wear a monitor at home instead of in the hospital. One doctor thinks the test is inaccurate and wouldn’t tell us much, the other thinks it could really help identify different types of problems. Has anyone had this procedure? Any thoughts?

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Comment by qmfub — July 29, 2020 @ 1:15 PM

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- I think they are both equally effective.
  
  An AEEG (Ambulatory Electroencephalography) is a relatively recent technology that allows a prolonged EEG recording in the home setting.
  
  Its ability to record continuously for up to 72 hours increases the recording of an ictal event or interictal discharges. And it allows the doctor to determine whether events with unusual features are epileptic seizures, the type of epileptic seizure, and the region of the brain from which the seizures arise.
  
  Also, an AEEG is a less expensive alternative to in-patient monitoring, with costs that are 51-65 percent lower than a 24 hour inpatient admission for Video-EEG monitoring.
  
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  Comment by Phylis Feiner Johnson — July 29, 2020 @ 4:09 PM
  
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  - Thanks very much for your input!
    
    LikeLiked by 1 person
    
    Comment by qmfub — July 29, 2020 @ 4:57 PM
  - AND you DON’T HAVE TO STAY IN THE HOSPITAL EITHER!!
    
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    Comment by Kathy S.B — August 9, 2020 @ 10:00 PM
Last time I had a grand mal seizure & I was laying down in hospital bed, I overheard the ER doctor telling my family “he’s in early stages of dementia”.
Oh, This was the first time I ever heard that my seizures are leading up to more drama.
The doctor’s statement shocked me so bad, I prefer to die having seizures than losing my mind to the point I can NOT even remember & recognize my family because of dementia.
Living with epilepsy is already difficult condition without having to add more adversity.
Gerrie

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Comment by BahreNegash Eritrea — July 29, 2020 @ 4:21 PM

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- ER doctors are specialists in emergency medicine. These days they are seriously overworked. I seem to recall that there is no test for dementia, as in blood test or brain scan. It’s guess work. Even a neurologist would be, to some extent, guessing.
  
  I join you and your family in thinking calming thoughts and planning a strategy for dealing with what is, right now, very possibly a doctor’s mistake.
  
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  Comment by HoDo — July 29, 2020 @ 5:15 PM
  
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  - Thanks HoDo for explaining the assignment of ER doctors & the potential possibility for misdiagnosis.
    I’m finding out the intern doctors are coming faster to conclusions without taking enough time to research the medical history of patients.
    Let’s hope, time will reveal it all.
    Gerrie
    
    LikeLiked by 2 people
    
    Comment by BahreNegash Eritrea — July 29, 2020 @ 11:27 PM
  - I never knew this until just recently that apparently we don’t need to keep going for mri’s if they already have one!! At least that’s what I was told by my new neurologist, but I don’t know about that?
    
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    Comment by Kathy S.B — August 20, 2020 @ 9:13 PM
  - I’m not sure about that.
    
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    Comment by Phylis Feiner Johnson — August 20, 2020 @ 10:54 PM
- I saw a news article earlier in the week about how finally there seems to be a blood test that will detect dementia. So anything else is guesswork.
  
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  Comment by HoDo — July 30, 2020 @ 5:34 PM
  
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  - Thanks God, It’s good to know that science is finally catching up with the most complicated medical disorders tormenting human kind for centuries.
    Let’s hope that the good news in the pursuit of logical diagnosis for dementia will continue to produce practical solutions than guessing adventure.
    Gerrie
    
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    Comment by BahreNegash Eritrea — July 30, 2020 @ 10:32 PM
- Just by serendipity I ran across the term “behavioral neurologist.” These doctors diagnose by looking at how you act and speak. Ideally, they do not go by what your family think or what an ER doctor thinks, but by what distresses you, the patient. Perhaps a second opinion by one such would be useful?
  
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  Comment by HoDo — August 3, 2020 @ 4:52 PM
  
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  - Is this what you mean HoDo?
    
    Exactly what IS Neuropsychology?
    
    https://epilepsytalk.wordpress.com/?p=12340&preview=true
    
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    Comment by Phylis Feiner Johnson — August 3, 2020 @ 5:09 PM
  - Either that link goes nowhere or my tablet is playing games. Sorry.
    
    A skilled behavioral neurologist (e.g. Joel Salinas) understands the behaviors connected with both dementia and epilepsy, as well as the neurology.
    
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    Comment by HoDo — August 3, 2020 @ 6:09 PM
  - Thanks for the great and concise definition.
    
    Sorry you couldn’t open the link. It turns out to be irrelevant.
    
    The link is to a preview of an article not yet published. I thought that since I was able to bring it up on my computer, you would be able to, also.
    
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    Comment by Phylis Feiner Johnson — August 3, 2020 @ 6:53 PM
Gerrie, are you kidding me? How did he KNOW you were “in early stages of dementia”?

Were you tested? Any follow up? I don’t understand.

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Comment by Phylis Feiner Johnson — July 29, 2020 @ 4:44 PM

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- No Phylis, I never had been tested for dementia & this was the first time I ever heard that dementia is taking over my brain.
  Therefore, while I consider the intern doctor’s remarks to be wrong, I intend to take tests & keep close focus to the symptoms & diagnosis of dementia.
  Gerrie
  
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  Comment by BahreNegash Eritrea — July 29, 2020 @ 11:54 PM
  
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Gerrie, I would suggest you have one of the family members who heard that, contact your Dr. and find out what they meant. As if we people with E don’t have enough sh*t to deal with!

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Comment by skolly9 — July 29, 2020 @ 5:06 PM

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- Thanks Skolly, My niece finding out about the Doctor’s unexpected remarks is already digging out the case, if there was any medical diagnosis carried out to prove & assert the Doctors comments.
  I agree with you that as if recuperating from seizures was NOT disorienting & confusing enough, over hearing some ER doctor you had never seen before talking about your brain degenerating towards dementia feels like adding an insult to the injury.
  I’m hoping & praying that the unprofessional intern Doctor is wrong.
  Gerrie
  
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  Comment by BahreNegash Eritrea — July 29, 2020 @ 10:59 PM
  
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  - Remember, he’s just an ER doctor. (Probably an intern, at that.) What he knows about your brain is most likely nil.
    
    And mouthing off an uneducated statement, in my mind, is unforgivable.
    
    If it wasn’t for you, your intelligence and due diligence, it could well be catastrophic.
    
    LikeLiked by 1 person
    
    Comment by Phylis Feiner Johnson — July 30, 2020 @ 9:28 AM
  - Thanks Phylis, Your support & the support all members of this forum has been instrumental in understanding & coping with the deep mistry behind epilepsy & the medical struggle for normal ordinary life I had been privileged to live.
    From total stranger to epilepsy, I came a long way to make it this far & I couldn’t have done it with out ALL of you standing by my shoulders to share your wisdom & rich experience.
    Thank you for coming to my rescue when I need it the most.
    Gerrie
    
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    Comment by BahreNegash Eritrea — August 2, 2020 @ 6:00 PM
  - Another I would and do just prefer to stay home and just over my head in the blankets and wear headphones with soft music just loud enough to block the world out!! Plus when I end up in that position EXACTLY BECAUSE OF THE SAME THING HAPPENING TO ME AND MY HUSBAND AND DAUGHTER IN E.R. I WILL NEVER GO IN UNLESS I AM ALMOST CRAZY TRUST ME!!!!!!! Lol 😂 even if I am in E.R. I STILL GET SOMEONE I LOVE AND TRUST ON THE PHONE WITH ME TO JUST LISTEN THEMSELVES AND TALK TO ONLY ME!!!!!!! 🙏🏼🦅😇🙏🏼❤️😘
    
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    Comment by Kathy S.B — August 9, 2020 @ 10:25 PM
I have petite mal seizures, and an eating disorder. I’ve had it since my teens, and into my 40’s. (Both epilepsy and anorexia)

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Comment by Amy — July 29, 2020 @ 8:49 PM

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- Do you feel the eating disorder was a product of your epilepsy or stress? ( My guess would be the same stress that triggers seizures. )
  
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  Comment by Phylis Feiner Johnson — July 29, 2020 @ 8:59 PM
  
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My son has been denied 4 times for SS Disability! What can he do now? His only income is 550.00 monthly, his neurologist dropped him after 10yrs stating nothing else he could do! No income, no neurologist where does he go now for help?

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Comment by Kyle Bowen — July 30, 2020 @ 1:37 AM

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- Kyle, here are some links that may help:
  
  Epilepsy — Applying for Social Security Disability Benefits — Straight from the Source
  
  Epilepsy — Applying for Social Security Disability Benefits — Straight from the Source
  
  Social Security Claims — Winning Secrets
  
  Social Security Claims — Winning Secrets
  
  I would also strongly suggest you get a good disability lawyer.
  
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  Comment by Phylis Feiner Johnson — July 30, 2020 @ 9:35 AM
  
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  - I WISH WE COULD FIND THOS LAWYERS IN CANADA!!!!!!!
    
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    Comment by Kathy S.B — August 9, 2020 @ 10:35 PM
- Kyle,
  There are two versions of social security income, SSDI & SSI.
  While the eligibility for SSI (social security income) does NOT require employment history or income deductions (SS taxes) previously paid to social security insurance, to qualify for SSDI (social security disability income) the applicant must have been previously paying social security insurance TAXES before the disability.
  Based on employment history & income taxes, the eligibility for SSDI is far more strict than for SSI & the bureaucratic nightmare is made difficult to pursue.
  Gerrie
  
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  Comment by BahreNegash Eritrea — July 30, 2020 @ 3:54 PM
  
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  - Actually SSI stands for Supplemental Security Income and since it is considered a welfare program since the recipient would not be receiving funds they paid into through work as those with SSDI (Social Security Disability Income) did through deductions from their paychecks for Social Security they are receiving early because of disability, it is more difficult to get because it is being paid for by taxpayers. Social Security is not granted to people simply because they have a disability, but rather whether or not the disability has functional limitations on your ability to work. Because of the Americans with Disabilities Act of 1990 severely disabled people are legally not restricted from employment “if they can perform the essential functions of the job with or without reasonable accommodations” by an employer.
    
    LikeLiked by 1 person
    
    Comment by Patricia Ueland — August 1, 2020 @ 2:27 PM
  - Patricia,
    Thank you for your correction to my reply with more detailed information on disability income.
    There seems to be a wide range of misunderstanding on what SSI or SSDI stands for leading many people to believe that any form of disability is eligible for SSI &/or SSDI benefits without too many strings attached to the them.
    Coupled with medical hardships,
    the misunderstanding & process for eligibility of disability benefits ends up being a very difficult struggle for many to end up in economic crisis.
    Expediting the bureaucratic process for eligibility of disability income benefits could save too many lives from drowning in economic meltdown.
    Gerrie
    
    LikeLiked by 2 people
    
    Comment by BahreNegash Eritrea — August 1, 2020 @ 11:51 PM
At my last Epilepsy Support Group, I caught myself saying at least 3 times, “As if those with Epilepsy don’t have enough to deal with,” like Skolly wrote. Mine is a condition by several names but I think the most familiar is Periodic Limb Movements of Sleep (PLMS). It mimics a tonic clonic seizure – “As if those with Epilepsy don’t have enough to deal with.” My neurologist told me that some who get their tonic clonic seizures under control can develop PLMS. It is a jerking movement of the limbs which can go on for up to 30 minutes, though not all the time. He has no plans to change my medications of clonazepam and lamotrigine. And now you can fill in the blank ….

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Comment by George Choyce — July 30, 2020 @ 11:07 AM

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- Oh George, how miserable! And you’re stuck with this condition for the rest of your life?
  
  Is there no add-on med that can help give you some relief?
  
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  Comment by Phylis Feiner Johnson — July 30, 2020 @ 11:12 AM
  
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  - It’s miserable for my spouse too. She cannot get back to sleep as soon as it is over due to all of my previous flinching. I am asleep the whole time but wake up like I have had that awful tonic clonic involuntary workout. Yep, I think it is with me the rest of my life. (My neurologist says that I am one of his success stories.) I am getting ready to try some CBD as an add-on. I really can’t stand the meds I take right now. Your insight would be invaluable.
    
    LikeLiked by 1 person
    
    Comment by George Choyce — July 30, 2020 @ 2:06 PM
You’re one of neurologist’s “success stories”? What are his failures like? 😦

I really wish I knew how to help you, George. But this article might shed some light on the CBD factor.

New Data Back Use of Medical Cannabis for Epilepsy, Pain, Anxiety

https://epilepsytalk.com/2020/07/07/new-data-back-use-of-medical-cannabis-for-epilepsy-pain-anxiety/?fbclid=IwAR1h7btbKUr3FaoIGMcb7nPGcJInL7Gf_gNZ6c39ILHEBpwbF2o68ZLt52I

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Comment by Phylis Feiner Johnson — July 30, 2020 @ 2:27 PM

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- George, another not-as-current article explains use of CBD and THC for pain.
  
  What are the best cannabis strains for chronic pain?
  
  https://www.medicalnewstoday.com/articles/322051
  
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  Comment by Phylis Feiner Johnson — July 30, 2020 @ 2:34 PM
  
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  - If marijuana is legal where you live, speak with your pharmacist. Mine was endlessly helpful.
    
    Also see the March 19, 2020 issue of U.S Pharmacist at uspharmacist.com, search for cannabis for chronic pain.
    
    LikeLiked by 1 person
    
    Comment by HoDo — July 30, 2020 @ 3:44 PM
  - More thoughts on marijuana: don’t go into a dispensary expecting the person behind the counter to have medical knowledge. Come in knowing the strain you want.
    
    Also, it may be – I haven’t checked this out – that different areas of the country have different strains, just as the squash where I live now are not what grew well in the area where I was born.
    
    It’s possible that the best strain for you is available elsewhere. Or you could start a basement garden with GroLights. 🙂
    
    LikeLiked by 2 people
    
    Comment by HoDo — July 30, 2020 @ 5:39 PM
  - SMART lady!
    
    LikeLiked by 1 person
    
    Comment by Phylis Feiner Johnson — July 30, 2020 @ 5:44 PM
  - Here you go. Pain management doctors in your area: asra.com
    
    LikeLiked by 2 people
    
    Comment by HoDo — July 31, 2020 @ 11:00 AM
  - As usual, HoDo comes through! Thanks lots.
    
    LikeLiked by 1 person
    
    Comment by Phylis Feiner Johnson — July 31, 2020 @ 11:02 AM
- When medical marijuana is available legally, there are also going to be doctors besides psychiatrists whose specialty is evaluating patients and prescribing.
  
  Since pain is highly subjective, if the doctor is a skeptic, you may be mistaken for a stoner. If this happens, assure the doctor that you want only a non-hallucinogenic strain.
  
  LikeLiked by 2 people
  
  Comment by HoDo — July 31, 2020 @ 6:12 AM
  
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  - The balance between CBC and THC is a delicate one. I know from other’s experience, that when you’re left to your own devices, ii’s a crap shoot at best.
    
    And even though the “counselors” at the dispensaries are supposed to guide you, they’re useless. Because, no one knows your body like you.
    
    Formats: tincture, seeds, gummies, etc. Combination of CBC and THC or just CBC alone?
    It’s a difficult, yet very important decision.
    
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    Comment by Phylis Feiner Johnson — July 31, 2020 @ 9:22 AM
  - Who pays the counselors at dispensaries? Better to find your own resources.
    
    LikeLiked by 1 person
    
    Comment by HoDo — July 31, 2020 @ 10:23 AM
  - Easier said than done. How do you find your own resources?
    
    In PA we must go to dispensaries, with a marijuana license. That’s the law here.
    
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    Comment by Phylis Feiner Johnson — July 31, 2020 @ 10:27 AM
  - Me, I would try going online to look for “marijuana doctor near me.” We must go to dispensaries as well, but doctors write the prescriptions for medical marijuana.
    
    LikeLiked by 2 people
    
    Comment by HoDo — July 31, 2020 @ 10:43 AM
Medical Cannabis for Chronic Pain

https://www.uspharmacist.com/article/medical-cannabis-for-chronic-pain

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — July 30, 2020 @ 3:56 PM

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Thanks to you Phylis and HoDo. You all have given me some medical ways to go. As far as the “success stories” comment went, I challenged him on that too. He said that I could drive and able to cook, etc … He was pretty much saying something about being grateful, without using those exact words – “as if we don’t already have enough to deal with.”

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Comment by George Choyce — July 30, 2020 @ 4:23 PM

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- Oh gee. You can chew gum and walk at the same time. Is he taking credit for that, too? 😦
  
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  Comment by Phylis Feiner Johnson — July 30, 2020 @ 4:30 PM
  
  Reply
No comment.

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Comment by George Choyce — July 30, 2020 @ 5:11 PM

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George, even the EFA and other org. are starting to more strongly promote CBD for E and many other neurological concerns.. Still, as an add-on, since little testing as been done. I don’t know where you live, but it’s an important option to consider.

LikeLiked by 1 person

Comment by skolly9 — July 30, 2020 @ 7:23 PM

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Hey George, I have restless leg syndrome every now and then. It’s the same as your plm, but it occurrs more during the day. It started when i started to Gabapentin, which i found out is a remedy for RLS to some. But what is a remedy for some can be the exact opposite to others, like me. I have lots of praise for Gabapentin and how it has controlled my seizures. So i figured I don’t mind the rls since it doesn’t happen often.

Doing some research i found the following. “Clonazepam (Klonopin), in particular, has been shown to reduce the total number of periodic limb movements per hour.” So u might be like me where the drug is inducing the undesired effect. I don’t know, did u have the problem before taking that drug?

Docs can be stubborn at times but when your health is concerned you need to take charge. When i was on lamotrigen it made my seizures 5x worse and I was really afraid of dying because of it. So i put my foot down and demanded he change my med. He did. And he miraculously choose Gabapentin as the next med to try.

Also if u try pot, the thc can be a really good sensation, at least i like it.

My 2 cents.

LikeLiked by 1 person

Comment by Zolt — August 3, 2020 @ 11:17 AM

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Hey Gerrie, as u know no one is perfect or correct all the time, docs are no exception. Even a seasoned expert who have been in the business for 40+ yrs can make mistakes. Well after one of my many MRIs to see if my baseball size tumor had returned or not, well the nuero doc would send me a letter telling me if it has returned or not. Well this doc made a horrible mistake, in the letter he told me that my brain tumor had returned. I got that letter on a friday night after work and could not talk to him about. That ruined my whole weekend. On Sunday evening i decide to email my surgeon to tell her if i need surgery again i would like her to do it. Well that evening she emailed me back and told me the nuero had made a mistake and she looked at my mri and found no trace of a return of my tumor. I was so relieved. I liked the nuero that made the mistake and did not fire him since he helped me out get my licence back after a accident from a seizure a few yrs before that.

In ur case, i would ask the doc for further physical evidence to prove they are correct or not.

My 2 cents worth.

LikeLiked by 2 people

Comment by Zolt — August 3, 2020 @ 12:01 PM

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- Yes Zolt, Thank you for sharing your experience & I agree with you that human beings are prone to make mistakes.
  None of us is perfect nor consistently correct, including the doctors we trust to save our lives.
  In fact, medical errors are one the most commonly known public tragedies inflicting fatal consequences to many lives.
  Therefore, it’s always importantly necessary to consult with few more other doctors before ending up accepting one doctor’s wrong prognosis wrecking your wellbeing.
  And that’s why I intend to see & consultant with more doctors & take more tests to find out if dementia is taking over my brain, as the ER doctor told my family.
  Just like I’m pleased to know that you were able to reach out to your Surgeon to resolve your Nuerologist’s wrong diagnosis, I hope I get cleared from the ER doctors unexpected conclusions.
  Gerrie
  
  LikeLiked by 1 person
  
  Comment by BahreNegash Eritrea — August 3, 2020 @ 4:06 PM
  
  Reply
  - All our good thoughts and wishes go with you, Gerrie.
    
    LikeLiked by 2 people
    
    Comment by HoDo — August 3, 2020 @ 4:18 PM
  - Medical Mistakes Out of Control!
    
    Medical Mistakes Out of Control!
    
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    Comment by Phylis Feiner Johnson — August 3, 2020 @ 5:06 PM
  - HoDo,
    Thank you for your compassionate kind words, I’m very grateful for your inspiring support & caring prayers for my wellbeing.
    I’m fortunate to have uplifting friends like you sharing my medical hardships.
    May God bless you!
    Gerrie
    
    LikeLiked by 2 people
    
    Comment by BahreNegash Eritrea — August 4, 2020 @ 5:35 PM
Zolt, I’m glad your tumor had not returned. You are wonderfully forgiving of your Neuro who made the mistake, I must say. I would have been appalled at their mistake, however, forcing one to rethink having nasty surgery again and all it had entailed over a weekend. Who deserves that?

LikeLiked by 1 person

Comment by skolly9 — August 3, 2020 @ 6:32 PM

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We do share, here, yes. It’s a benefit to all, including you sharing your story and feelings, thank you.

I ran across a comment in a book on neurodiversity – that doctors should not be treating the diagnosis, but the symptoms which distress the patient. It’s a new context for me. Perhaps it’s one you can use.

Again, every good wish.

LikeLiked by 2 people

Comment by HoDo — August 4, 2020 @ 5:42 PM

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I have Chiari Malformation type 1 as well as Epilepsy and it too causes heart, sleep, headaches, and other issues. I was diagnosed with my Epilepsy before my Chiari Malformation type 1 even though I had symptoms of my Chiari Malformation in childhood too. Sadly, it’s mostly Neurosurgeons that specialize in Chiari Malformation and they are few and far between. I am having more seizures lately.

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Comment by trekkie80sgirl — August 5, 2020 @ 9:46 PM

Reply
- Do you think a change of meds or diet might help? Here’s some food for thought:
  
  Three Anti-Seizure Diets That Could Change Your Life…
  
  Three Anti-Seizure Diets That Could Change Your Life…
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — August 5, 2020 @ 10:12 PM
  
  Reply
  - Only decompression surgery can help Chiari Malformation type 1. I already am on Modified Atkins Diet mixed with Paleo as well as multiple prescription medications and whole food supplements, did Epilepsy surgeries, and I have the VNS. Been through practically every medication available, unless the ones I w have s on in the past have a liquid version available. No one was thinking about those originally when I tried prescription medications.
    
    LikeLiked by 1 person
    
    Comment by trekkie80sgirl — August 11, 2020 @ 11:24 AM
In the U.S. you can get liquid meds with a prescription from your doctor.

Click to access Standardize-the-Dosing-Designations-on-Prescription-Container-Labels-for-Oral-Liquid-Medications-%28pdf%29.pdf

https://consumermedsafety.org/tools-and-resources/medication-safety-tools-and-resources/taking-your-medicine-safely/measure-liquid-medications

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Comment by Phylis Feiner Johnson — August 11, 2020 @ 11:32 AM

Reply
- Is hypothacary the same as compounding pharmacy? You need a Rx but then they mix it up to order.
  
  LikeLiked by 1 person
  
  Comment by HoDo — August 11, 2020 @ 11:41 AM
  
  Reply
  - 3 Differences Between Compounding & Retail Pharmacies
    
    https://archwayapothecary.com/3-differences-between-compounding-retail-pharmacies/
    
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    Comment by Phylis Feiner Johnson — August 11, 2020 @ 11:52 AM
- I already do that for my Epilepsy medications and my Cetirizine. A lot of other doctors don’t even let me ask or don’t ask me why I use liquids. I use Albuterol inhaler for my Asthma, so not much I can do on changing an asthma medication unless I ask for a nebulizer(which I have one) treatment instead. Taking more pills will make me gain more weight than I already have in the last year. I also get Botox injections for my headaches now.
  
  LikeLiked by 1 person
  
  Comment by trekkie80sgirl — August 21, 2020 @ 11:22 PM
  
  Reply
P.S. HoDo, in Canada, I believe they are the same thing, according to Kathy.

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Comment by Phylis Feiner Johnson — August 11, 2020 @ 11:56 AM

Reply
Thank you,Phylis! I have several of these conditions. The orthopedic ones preceded the epilepsy. But the gastroparesis, migraines, fatigue, anxiety, depression and sleep disorders all came afterwards. Epilepsy is such a complex disorder with ancillary factors. And my condition constantly evolves with stress, work, medication and time, as it does for everyone, I am sure. Thanks for being so empathetic about what we go through and helping us get through the maze.

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Comment by Mary Ellen Gambon — August 19, 2020 @ 11:48 AM

Reply
- It IS a maze with so many consequences it’s almost unbelievable. I guess the only way to deal is with the source itself and then each malady as it presents itself.
  
  But Mary Ellen, you are such a brave soul to persevere with your advocacy and writing, despite your physical limitations.
  
  Nothing can stop you when you’re on a roll! 🙂
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 19, 2020 @ 11:55 AM
  
  Reply
  - Thanks, Phylis! I have a good mentor! 😀
    
    LikeLiked by 1 person
    
    Comment by Mary Ellen Gambon — August 19, 2020 @ 2:39 PM
  - Wonder who that is? 🙂
    
    LikeLike
    
    Comment by Phylis Feiner Johnson — August 19, 2020 @ 2:52 PM
  - 😀 ❤
    
    LikeLiked by 1 person
    
    Comment by Mary Ellen Gambon — August 19, 2020 @ 5:01 PM
The October 2020 issue of Consumer Reports has a long article on headaches with an emphasis on migraines.

LikeLiked by 1 person

Comment by HoDo — October 13, 2020 @ 1:21 PM

Reply
- Is this it HoDo?
  
  Healthier Ways to Handle a Headache
  
  https://www.consumerreports.org/headache/healthier-ways-to-handle-a-headache/
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — October 13, 2020 @ 1:28 PM
  
  Reply
  - It is. Came in my email with no url.
    
    LikeLiked by 1 person
    
    Comment by HoDo — October 13, 2020 @ 1:36 PM
  - GREAT article. Everyone should read it!
    
    LikeLike
    
    Comment by Phylis Feiner Johnson — October 13, 2020 @ 1:39 PM
  - I always treat a headache first with a glass of water. Sometimes that’s enough.
    
    LikeLiked by 1 person
    
    Comment by HoDo — October 13, 2020 @ 1:37 PM
  - The article says: “For many headache types, keeping consistent mealtimes, bedtimes, and wake times can help, as can making sure you’re staying hydrated by drinking plenty of water. ‘It sounds so basic, but it helps so much,’ she says. For migraines, a neurologist can also help you identify possible triggers, such as dehydration.”
    
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    Comment by Phylis Feiner Johnson — October 13, 2020 @ 1:42 PM
  - Hah! What’s common knowledge amongst those of us with megrims finally goes mainstream.
    
    LikeLiked by 1 person
    
    Comment by HoDo — October 13, 2020 @ 1:59 PM
Wow, Phylis! Again, you pegged things the doctors did not put together. Of course, we knew about the sleeping, anxiety and depression. But the gastro problems? Bingo! An ever evolving disease with more puzzle pieces to solve.

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Comment by Mary Ellen Gambon — October 14, 2020 @ 12:42 PM

Reply
WELL YEAHHHH !! Since I was 5 years old I knew something was the root cause of my petit mal seizures, from the foods & drinks I was having back then in the 1960’s. So here is 2021 and now my doctors are willing to have me in a hospital stay for 3 or more days until a seizure happens & caused from THE DIET I will eat while there ? Really,, WHY could that had been done 50 years ago ? Not for me then but for everyone, as I told my doctor this isn’t going to be done just for me, IF you find anything else with my seizure condition, that You can ALSO FIND A SAME OR SIMILAR CAUSE that 30 or more MILLION 1/2 of the people with seizures today, that THEY can benefit from. 50% of the people will only trust ideas given to them by doctors only, and at the same time not worry about anything else unless the doctor say to be concern about whatever, which with many of them, THEY KNOW and they wont tell you nothing UNLESS you ask them 1st if SOMETHING ELSE could help your condition. They may wait for decades before 1 of them will say YES, it is worth trying, BUT How do you know they tell you the TRUTH of those results from a NEW test ? even if the results may or may not stop or create a seizure. Oh what a ride of more than 60 years of how others WILL & DO judge you in what & how your life should be lived ”not by doctors only”, & HOW it is, with some who tries to make your life how it is going to be. God will do that for me, & better than I expect as I keep doing my part the right way.

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Comment by James D — April 29, 2021 @ 11:33 AM

Reply
I started going stiff when I was 7yr old I’m now 50 since then I have taken fits minus 7yrs in between (when I got to drive not able now). In that time I have also had pituatory tumour (macro) now shrank with tablets for life. Polycystic ovaries, extradural brain haemorrhage (now shrank), and diabetes (type 2 insulin). Also have problems of tired all time, memory and cognitive impairment which over the time I did work for 27 yr but had to retire a couple of years ago due to health.

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Comment by Clare — April 29, 2021 @ 5:01 PM

Reply
You brave, brave person. How did you weather all of that AND work for 27 years, Clare?

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Comment by Phylis Feiner Johnson — April 29, 2021 @ 5:36 PM

Reply
This is so helpful. Since I developed epilepsy, I also have endured coma, migraines, a heart attack and asthma. People tend to think of it as just having seizures, but epilepsy is so much more complex. And the emotional distress and anxiety can be unreal unless your care is properly managed.

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Comment by Mary Ellen Gambon — April 29, 2021 @ 5:52 PM

Reply
And sometimes managing it is more difficult than dealing with the seizures themselves.

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Comment by Phylis Feiner Johnson — April 29, 2021 @ 6:14 PM

Reply
- That is the truth! And, like you said before, the medicines have their own issues. Happy to see what you found on Onfi.
  
  LikeLiked by 1 person
  
  Comment by Mary Ellen Gambon — April 29, 2021 @ 6:22 PM
  
  Reply
I’ve been diagnosed as an epileptic since on month of age. Having scoliosis @ 12 & mostly fixed. High anxiety & depression. Granted disability due to anxiety, depression & epilepsy in 2015. Though in the state of Az epilepsy is not a disability. Doctors are thinking I have COPD now too. I am told I have a form of narcolepsy that makes me constantly fatigue so I do have to take a nap during the day now. I also have severe headaches & migraine that I take medicine for & a shot every 3 weeks for. I’m allergic to 15 medications, which mostly are antibiotics. I’ve worked mostly retail in my lifetime & started working at 19, had done some things under the table too like normal teens & kids have done as of babysitting in all when seizures weren’t at the highest peak. I at one time was seizure free for 8 yrs but was in an accident & it came back in 1999 .

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Comment by Linda Bader — April 30, 2021 @ 10:03 AM

Reply
- Oh my God Linda. How do you do it all? You must be one brave and indefatigable lady!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — April 30, 2021 @ 10:21 AM
  
  Reply

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To me seizures are a form of death. Each and every seizure I wonder is this the big one, my last seizure ever.

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Comment by Zolt — July 29, 2020 @ 10:47 AM

I think we all walk around with that cloud hovering overhead. Afraid that the next seizure may be our final one.

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Comment by Phylis Feiner Johnson — July 29, 2020 @ 10:57 AM

[…] Epilepsy Related Conditions — Epilepsy Talk […]

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Pingback by Epilepsy Related Conditions — Epilepsy Talk – Epilepsy & Cerebral Palsy — July 29, 2020 @ 12:10 PM

You know these things and now, thanks to you, I know them as well. My regular doctors, however, have not known. In most cases, it’s been “treat the symptom” rather than the underlying cause.

I suspect that people with epilepsy have more hormonal disorders than the general population. Diabetes and some forms of insomnia are just two.

Comment by HoDo — July 29, 2020 @ 12:20 PM

Yes it makes me wonder if that’s why the gastroenterologist can’t seem to figure out what is happening to me now and why I get the MOST NASTY STOMACHACHES FOREVER AND A DAY!!!!!!!

LikeLiked by 1 person

Comment by Kathy S.B — August 20, 2020 @ 9:11 PM

Band aids seem to be a popular solution. Maybe to cover the misdiagnosis, laziness or just plain stupidity.

Comment by Phylis Feiner Johnson — July 29, 2020 @ 12:24 PM

Two weeks ago I spent 12 hours in the ER with “status eplilepticus,” but I can’t always tell the difference between a seizure, a migraine, extreme fatigue, or ??? My epileptologist and neuro-oncologist are now in disagreement about whether to order an ambulatory EEG, where I would be hooked up and wear a monitor at home instead of in the hospital. One doctor thinks the test is inaccurate and wouldn’t tell us much, the other thinks it could really help identify different types of problems. Has anyone had this procedure? Any thoughts?

LikeLiked by 1 person

Comment by qmfub — July 29, 2020 @ 1:15 PM

I think they are both equally effective.

An AEEG (Ambulatory Electroencephalography) is a relatively recent technology that allows a prolonged EEG recording in the home setting.

Its ability to record continuously for up to 72 hours increases the recording of an ictal event or interictal discharges. And it allows the doctor to determine whether events with unusual features are epileptic seizures, the type of epileptic seizure, and the region of the brain from which the seizures arise.

Also, an AEEG is a less expensive alternative to in-patient monitoring, with costs that are 51-65 percent lower than a 24 hour inpatient admission for Video-EEG monitoring.

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — July 29, 2020 @ 4:09 PM

- Thanks very much for your input!
  
  LikeLiked by 1 person
  
  Comment by qmfub — July 29, 2020 @ 4:57 PM
- AND you DON’T HAVE TO STAY IN THE HOSPITAL EITHER!!
  
  LikeLiked by 2 people
  
  Comment by Kathy S.B — August 9, 2020 @ 10:00 PM

Last time I had a grand mal seizure & I was laying down in hospital bed, I overheard the ER doctor telling my family “he’s in early stages of dementia”.
Oh, This was the first time I ever heard that my seizures are leading up to more drama.
The doctor’s statement shocked me so bad, I prefer to die having seizures than losing my mind to the point I can NOT even remember & recognize my family because of dementia.
Living with epilepsy is already difficult condition without having to add more adversity.
Gerrie

LikeLiked by 3 people

Comment by BahreNegash Eritrea — July 29, 2020 @ 4:21 PM

ER doctors are specialists in emergency medicine. These days they are seriously overworked. I seem to recall that there is no test for dementia, as in blood test or brain scan. It’s guess work. Even a neurologist would be, to some extent, guessing.

I join you and your family in thinking calming thoughts and planning a strategy for dealing with what is, right now, very possibly a doctor’s mistake.

LikeLiked by 2 people

Comment by HoDo — July 29, 2020 @ 5:15 PM

- Thanks HoDo for explaining the assignment of ER doctors & the potential possibility for misdiagnosis.
  I’m finding out the intern doctors are coming faster to conclusions without taking enough time to research the medical history of patients.
  Let’s hope, time will reveal it all.
  Gerrie
  
  LikeLiked by 2 people
  
  Comment by BahreNegash Eritrea — July 29, 2020 @ 11:27 PM
- I never knew this until just recently that apparently we don’t need to keep going for mri’s if they already have one!! At least that’s what I was told by my new neurologist, but I don’t know about that?
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — August 20, 2020 @ 9:13 PM
- I’m not sure about that.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 20, 2020 @ 10:54 PM
I saw a news article earlier in the week about how finally there seems to be a blood test that will detect dementia. So anything else is guesswork.

LikeLiked by 2 people

Comment by HoDo — July 30, 2020 @ 5:34 PM

- Thanks God, It’s good to know that science is finally catching up with the most complicated medical disorders tormenting human kind for centuries.
  Let’s hope that the good news in the pursuit of logical diagnosis for dementia will continue to produce practical solutions than guessing adventure.
  Gerrie
  
  LikeLiked by 2 people
  
  Comment by BahreNegash Eritrea — July 30, 2020 @ 10:32 PM
Just by serendipity I ran across the term “behavioral neurologist.” These doctors diagnose by looking at how you act and speak. Ideally, they do not go by what your family think or what an ER doctor thinks, but by what distresses you, the patient. Perhaps a second opinion by one such would be useful?

LikeLiked by 2 people

Comment by HoDo — August 3, 2020 @ 4:52 PM

- Is this what you mean HoDo?
  
  Exactly what IS Neuropsychology?
  
  https://epilepsytalk.wordpress.com/?p=12340&preview=true
  
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  Comment by Phylis Feiner Johnson — August 3, 2020 @ 5:09 PM
- Either that link goes nowhere or my tablet is playing games. Sorry.
  
  A skilled behavioral neurologist (e.g. Joel Salinas) understands the behaviors connected with both dementia and epilepsy, as well as the neurology.
  
  LikeLiked by 2 people
  
  Comment by HoDo — August 3, 2020 @ 6:09 PM
- Thanks for the great and concise definition.
  
  Sorry you couldn’t open the link. It turns out to be irrelevant.
  
  The link is to a preview of an article not yet published. I thought that since I was able to bring it up on my computer, you would be able to, also.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 3, 2020 @ 6:53 PM

Gerrie, are you kidding me? How did he KNOW you were “in early stages of dementia”?

Were you tested? Any follow up? I don’t understand.

Comment by Phylis Feiner Johnson — July 29, 2020 @ 4:44 PM

No Phylis, I never had been tested for dementia & this was the first time I ever heard that dementia is taking over my brain.
Therefore, while I consider the intern doctor’s remarks to be wrong, I intend to take tests & keep close focus to the symptoms & diagnosis of dementia.
Gerrie

LikeLiked by 2 people

Comment by BahreNegash Eritrea — July 29, 2020 @ 11:54 PM

Gerrie, I would suggest you have one of the family members who heard that, contact your Dr. and find out what they meant. As if we people with E don’t have enough sh*t to deal with!

Comment by skolly9 — July 29, 2020 @ 5:06 PM

Thanks Skolly, My niece finding out about the Doctor’s unexpected remarks is already digging out the case, if there was any medical diagnosis carried out to prove & assert the Doctors comments.
I agree with you that as if recuperating from seizures was NOT disorienting & confusing enough, over hearing some ER doctor you had never seen before talking about your brain degenerating towards dementia feels like adding an insult to the injury.
I’m hoping & praying that the unprofessional intern Doctor is wrong.
Gerrie

LikeLiked by 2 people

Comment by BahreNegash Eritrea — July 29, 2020 @ 10:59 PM

- Remember, he’s just an ER doctor. (Probably an intern, at that.) What he knows about your brain is most likely nil.
  
  And mouthing off an uneducated statement, in my mind, is unforgivable.
  
  If it wasn’t for you, your intelligence and due diligence, it could well be catastrophic.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — July 30, 2020 @ 9:28 AM
- Thanks Phylis, Your support & the support all members of this forum has been instrumental in understanding & coping with the deep mistry behind epilepsy & the medical struggle for normal ordinary life I had been privileged to live.
  From total stranger to epilepsy, I came a long way to make it this far & I couldn’t have done it with out ALL of you standing by my shoulders to share your wisdom & rich experience.
  Thank you for coming to my rescue when I need it the most.
  Gerrie
  
  LikeLiked by 2 people
  
  Comment by BahreNegash Eritrea — August 2, 2020 @ 6:00 PM
- Another I would and do just prefer to stay home and just over my head in the blankets and wear headphones with soft music just loud enough to block the world out!! Plus when I end up in that position EXACTLY BECAUSE OF THE SAME THING HAPPENING TO ME AND MY HUSBAND AND DAUGHTER IN E.R. I WILL NEVER GO IN UNLESS I AM ALMOST CRAZY TRUST ME!!!!!!! Lol 😂 even if I am in E.R. I STILL GET SOMEONE I LOVE AND TRUST ON THE PHONE WITH ME TO JUST LISTEN THEMSELVES AND TALK TO ONLY ME!!!!!!! 🙏🏼🦅😇🙏🏼❤️😘
  
  LikeLike
  
  Comment by Kathy S.B — August 9, 2020 @ 10:25 PM

I have petite mal seizures, and an eating disorder. I’ve had it since my teens, and into my 40’s. (Both epilepsy and anorexia)

Comment by Amy — July 29, 2020 @ 8:49 PM

Do you feel the eating disorder was a product of your epilepsy or stress? ( My guess would be the same stress that triggers seizures. )

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Comment by Phylis Feiner Johnson — July 29, 2020 @ 8:59 PM

My son has been denied 4 times for SS Disability! What can he do now? His only income is 550.00 monthly, his neurologist dropped him after 10yrs stating nothing else he could do! No income, no neurologist where does he go now for help?

Comment by Kyle Bowen — July 30, 2020 @ 1:37 AM

Kyle, here are some links that may help:

Epilepsy — Applying for Social Security Disability Benefits — Straight from the Source

Epilepsy — Applying for Social Security Disability Benefits — Straight from the Source

Social Security Claims — Winning Secrets

Social Security Claims — Winning Secrets

I would also strongly suggest you get a good disability lawyer.

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Comment by Phylis Feiner Johnson — July 30, 2020 @ 9:35 AM

- I WISH WE COULD FIND THOS LAWYERS IN CANADA!!!!!!!
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — August 9, 2020 @ 10:35 PM
Kyle,
There are two versions of social security income, SSDI & SSI.
While the eligibility for SSI (social security income) does NOT require employment history or income deductions (SS taxes) previously paid to social security insurance, to qualify for SSDI (social security disability income) the applicant must have been previously paying social security insurance TAXES before the disability.
Based on employment history & income taxes, the eligibility for SSDI is far more strict than for SSI & the bureaucratic nightmare is made difficult to pursue.
Gerrie

LikeLiked by 1 person

Comment by BahreNegash Eritrea — July 30, 2020 @ 3:54 PM

- Actually SSI stands for Supplemental Security Income and since it is considered a welfare program since the recipient would not be receiving funds they paid into through work as those with SSDI (Social Security Disability Income) did through deductions from their paychecks for Social Security they are receiving early because of disability, it is more difficult to get because it is being paid for by taxpayers. Social Security is not granted to people simply because they have a disability, but rather whether or not the disability has functional limitations on your ability to work. Because of the Americans with Disabilities Act of 1990 severely disabled people are legally not restricted from employment “if they can perform the essential functions of the job with or without reasonable accommodations” by an employer.
  
  LikeLiked by 1 person
  
  Comment by Patricia Ueland — August 1, 2020 @ 2:27 PM
- Patricia,
  Thank you for your correction to my reply with more detailed information on disability income.
  There seems to be a wide range of misunderstanding on what SSI or SSDI stands for leading many people to believe that any form of disability is eligible for SSI &/or SSDI benefits without too many strings attached to the them.
  Coupled with medical hardships,
  the misunderstanding & process for eligibility of disability benefits ends up being a very difficult struggle for many to end up in economic crisis.
  Expediting the bureaucratic process for eligibility of disability income benefits could save too many lives from drowning in economic meltdown.
  Gerrie
  
  LikeLiked by 2 people
  
  Comment by BahreNegash Eritrea — August 1, 2020 @ 11:51 PM

At my last Epilepsy Support Group, I caught myself saying at least 3 times, “As if those with Epilepsy don’t have enough to deal with,” like Skolly wrote. Mine is a condition by several names but I think the most familiar is Periodic Limb Movements of Sleep (PLMS). It mimics a tonic clonic seizure – “As if those with Epilepsy don’t have enough to deal with.” My neurologist told me that some who get their tonic clonic seizures under control can develop PLMS. It is a jerking movement of the limbs which can go on for up to 30 minutes, though not all the time. He has no plans to change my medications of clonazepam and lamotrigine. And now you can fill in the blank ….

Comment by George Choyce — July 30, 2020 @ 11:07 AM

Oh George, how miserable! And you’re stuck with this condition for the rest of your life?

Is there no add-on med that can help give you some relief?

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Comment by Phylis Feiner Johnson — July 30, 2020 @ 11:12 AM

- It’s miserable for my spouse too. She cannot get back to sleep as soon as it is over due to all of my previous flinching. I am asleep the whole time but wake up like I have had that awful tonic clonic involuntary workout. Yep, I think it is with me the rest of my life. (My neurologist says that I am one of his success stories.) I am getting ready to try some CBD as an add-on. I really can’t stand the meds I take right now. Your insight would be invaluable.
  
  LikeLiked by 1 person
  
  Comment by George Choyce — July 30, 2020 @ 2:06 PM

You’re one of neurologist’s “success stories”? What are his failures like? 😦

I really wish I knew how to help you, George. But this article might shed some light on the CBD factor.

New Data Back Use of Medical Cannabis for Epilepsy, Pain, Anxiety

https://epilepsytalk.com/2020/07/07/new-data-back-use-of-medical-cannabis-for-epilepsy-pain-anxiety/?fbclid=IwAR1h7btbKUr3FaoIGMcb7nPGcJInL7Gf_gNZ6c39ILHEBpwbF2o68ZLt52I

Comment by Phylis Feiner Johnson — July 30, 2020 @ 2:27 PM

George, another not-as-current article explains use of CBD and THC for pain.

What are the best cannabis strains for chronic pain?

https://www.medicalnewstoday.com/articles/322051

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Comment by Phylis Feiner Johnson — July 30, 2020 @ 2:34 PM

- If marijuana is legal where you live, speak with your pharmacist. Mine was endlessly helpful.
  
  Also see the March 19, 2020 issue of U.S Pharmacist at uspharmacist.com, search for cannabis for chronic pain.
  
  LikeLiked by 1 person
  
  Comment by HoDo — July 30, 2020 @ 3:44 PM
- More thoughts on marijuana: don’t go into a dispensary expecting the person behind the counter to have medical knowledge. Come in knowing the strain you want.
  
  Also, it may be – I haven’t checked this out – that different areas of the country have different strains, just as the squash where I live now are not what grew well in the area where I was born.
  
  It’s possible that the best strain for you is available elsewhere. Or you could start a basement garden with GroLights. 🙂
  
  LikeLiked by 2 people
  
  Comment by HoDo — July 30, 2020 @ 5:39 PM
- SMART lady!
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — July 30, 2020 @ 5:44 PM
- Here you go. Pain management doctors in your area: asra.com
  
  LikeLiked by 2 people
  
  Comment by HoDo — July 31, 2020 @ 11:00 AM
- As usual, HoDo comes through! Thanks lots.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — July 31, 2020 @ 11:02 AM
When medical marijuana is available legally, there are also going to be doctors besides psychiatrists whose specialty is evaluating patients and prescribing.

Since pain is highly subjective, if the doctor is a skeptic, you may be mistaken for a stoner. If this happens, assure the doctor that you want only a non-hallucinogenic strain.

LikeLiked by 2 people

Comment by HoDo — July 31, 2020 @ 6:12 AM

- The balance between CBC and THC is a delicate one. I know from other’s experience, that when you’re left to your own devices, ii’s a crap shoot at best.
  
  And even though the “counselors” at the dispensaries are supposed to guide you, they’re useless. Because, no one knows your body like you.
  
  Formats: tincture, seeds, gummies, etc. Combination of CBC and THC or just CBC alone?
  It’s a difficult, yet very important decision.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — July 31, 2020 @ 9:22 AM
- Who pays the counselors at dispensaries? Better to find your own resources.
  
  LikeLiked by 1 person
  
  Comment by HoDo — July 31, 2020 @ 10:23 AM
- Easier said than done. How do you find your own resources?
  
  In PA we must go to dispensaries, with a marijuana license. That’s the law here.
  
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  Comment by Phylis Feiner Johnson — July 31, 2020 @ 10:27 AM
- Me, I would try going online to look for “marijuana doctor near me.” We must go to dispensaries as well, but doctors write the prescriptions for medical marijuana.
  
  LikeLiked by 2 people
  
  Comment by HoDo — July 31, 2020 @ 10:43 AM

Medical Cannabis for Chronic Pain

https://www.uspharmacist.com/article/medical-cannabis-for-chronic-pain

Comment by Phylis Feiner Johnson — July 30, 2020 @ 3:56 PM

Thanks to you Phylis and HoDo. You all have given me some medical ways to go. As far as the “success stories” comment went, I challenged him on that too. He said that I could drive and able to cook, etc … He was pretty much saying something about being grateful, without using those exact words – “as if we don’t already have enough to deal with.”

Comment by George Choyce — July 30, 2020 @ 4:23 PM

Oh gee. You can chew gum and walk at the same time. Is he taking credit for that, too? 😦

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Comment by Phylis Feiner Johnson — July 30, 2020 @ 4:30 PM

No comment.

Comment by George Choyce — July 30, 2020 @ 5:11 PM

George, even the EFA and other org. are starting to more strongly promote CBD for E and many other neurological concerns.. Still, as an add-on, since little testing as been done. I don’t know where you live, but it’s an important option to consider.

Comment by skolly9 — July 30, 2020 @ 7:23 PM

Hey George, I have restless leg syndrome every now and then. It’s the same as your plm, but it occurrs more during the day. It started when i started to Gabapentin, which i found out is a remedy for RLS to some. But what is a remedy for some can be the exact opposite to others, like me. I have lots of praise for Gabapentin and how it has controlled my seizures. So i figured I don’t mind the rls since it doesn’t happen often.

Doing some research i found the following. “Clonazepam (Klonopin), in particular, has been shown to reduce the total number of periodic limb movements per hour.” So u might be like me where the drug is inducing the undesired effect. I don’t know, did u have the problem before taking that drug?

Docs can be stubborn at times but when your health is concerned you need to take charge. When i was on lamotrigen it made my seizures 5x worse and I was really afraid of dying because of it. So i put my foot down and demanded he change my med. He did. And he miraculously choose Gabapentin as the next med to try.

Also if u try pot, the thc can be a really good sensation, at least i like it.

My 2 cents.

Comment by Zolt — August 3, 2020 @ 11:17 AM

Hey Gerrie, as u know no one is perfect or correct all the time, docs are no exception. Even a seasoned expert who have been in the business for 40+ yrs can make mistakes. Well after one of my many MRIs to see if my baseball size tumor had returned or not, well the nuero doc would send me a letter telling me if it has returned or not. Well this doc made a horrible mistake, in the letter he told me that my brain tumor had returned. I got that letter on a friday night after work and could not talk to him about. That ruined my whole weekend. On Sunday evening i decide to email my surgeon to tell her if i need surgery again i would like her to do it. Well that evening she emailed me back and told me the nuero had made a mistake and she looked at my mri and found no trace of a return of my tumor. I was so relieved. I liked the nuero that made the mistake and did not fire him since he helped me out get my licence back after a accident from a seizure a few yrs before that.

In ur case, i would ask the doc for further physical evidence to prove they are correct or not.

My 2 cents worth.

Comment by Zolt — August 3, 2020 @ 12:01 PM

Yes Zolt, Thank you for sharing your experience & I agree with you that human beings are prone to make mistakes.
None of us is perfect nor consistently correct, including the doctors we trust to save our lives.
In fact, medical errors are one the most commonly known public tragedies inflicting fatal consequences to many lives.
Therefore, it’s always importantly necessary to consult with few more other doctors before ending up accepting one doctor’s wrong prognosis wrecking your wellbeing.
And that’s why I intend to see & consultant with more doctors & take more tests to find out if dementia is taking over my brain, as the ER doctor told my family.
Just like I’m pleased to know that you were able to reach out to your Surgeon to resolve your Nuerologist’s wrong diagnosis, I hope I get cleared from the ER doctors unexpected conclusions.
Gerrie

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Comment by BahreNegash Eritrea — August 3, 2020 @ 4:06 PM

- All our good thoughts and wishes go with you, Gerrie.
  
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  Comment by HoDo — August 3, 2020 @ 4:18 PM
- Medical Mistakes Out of Control!
  
  Medical Mistakes Out of Control!
  
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  Comment by Phylis Feiner Johnson — August 3, 2020 @ 5:06 PM
- HoDo,
  Thank you for your compassionate kind words, I’m very grateful for your inspiring support & caring prayers for my wellbeing.
  I’m fortunate to have uplifting friends like you sharing my medical hardships.
  May God bless you!
  Gerrie
  
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  Comment by BahreNegash Eritrea — August 4, 2020 @ 5:35 PM

Zolt, I’m glad your tumor had not returned. You are wonderfully forgiving of your Neuro who made the mistake, I must say. I would have been appalled at their mistake, however, forcing one to rethink having nasty surgery again and all it had entailed over a weekend. Who deserves that?

Comment by skolly9 — August 3, 2020 @ 6:32 PM

We do share, here, yes. It’s a benefit to all, including you sharing your story and feelings, thank you.

I ran across a comment in a book on neurodiversity – that doctors should not be treating the diagnosis, but the symptoms which distress the patient. It’s a new context for me. Perhaps it’s one you can use.

Again, every good wish.

Comment by HoDo — August 4, 2020 @ 5:42 PM

I have Chiari Malformation type 1 as well as Epilepsy and it too causes heart, sleep, headaches, and other issues. I was diagnosed with my Epilepsy before my Chiari Malformation type 1 even though I had symptoms of my Chiari Malformation in childhood too. Sadly, it’s mostly Neurosurgeons that specialize in Chiari Malformation and they are few and far between. I am having more seizures lately.

Comment by trekkie80sgirl — August 5, 2020 @ 9:46 PM

Do you think a change of meds or diet might help? Here’s some food for thought:

Three Anti-Seizure Diets That Could Change Your Life…

Three Anti-Seizure Diets That Could Change Your Life…

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Comment by Phylis Feiner Johnson — August 5, 2020 @ 10:12 PM

- Only decompression surgery can help Chiari Malformation type 1. I already am on Modified Atkins Diet mixed with Paleo as well as multiple prescription medications and whole food supplements, did Epilepsy surgeries, and I have the VNS. Been through practically every medication available, unless the ones I w have s on in the past have a liquid version available. No one was thinking about those originally when I tried prescription medications.
  
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  Comment by trekkie80sgirl — August 11, 2020 @ 11:24 AM

In the U.S. you can get liquid meds with a prescription from your doctor.

Click to access Standardize-the-Dosing-Designations-on-Prescription-Container-Labels-for-Oral-Liquid-Medications-%28pdf%29.pdf

https://consumermedsafety.org/tools-and-resources/medication-safety-tools-and-resources/taking-your-medicine-safely/measure-liquid-medications

Comment by Phylis Feiner Johnson — August 11, 2020 @ 11:32 AM

Is hypothacary the same as compounding pharmacy? You need a Rx but then they mix it up to order.

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Comment by HoDo — August 11, 2020 @ 11:41 AM

- 3 Differences Between Compounding & Retail Pharmacies
  
  https://archwayapothecary.com/3-differences-between-compounding-retail-pharmacies/
  
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  Comment by Phylis Feiner Johnson — August 11, 2020 @ 11:52 AM
I already do that for my Epilepsy medications and my Cetirizine. A lot of other doctors don’t even let me ask or don’t ask me why I use liquids. I use Albuterol inhaler for my Asthma, so not much I can do on changing an asthma medication unless I ask for a nebulizer(which I have one) treatment instead. Taking more pills will make me gain more weight than I already have in the last year. I also get Botox injections for my headaches now.

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Comment by trekkie80sgirl — August 21, 2020 @ 11:22 PM

P.S. HoDo, in Canada, I believe they are the same thing, according to Kathy.

Comment by Phylis Feiner Johnson — August 11, 2020 @ 11:56 AM

Thank you,Phylis! I have several of these conditions. The orthopedic ones preceded the epilepsy. But the gastroparesis, migraines, fatigue, anxiety, depression and sleep disorders all came afterwards. Epilepsy is such a complex disorder with ancillary factors. And my condition constantly evolves with stress, work, medication and time, as it does for everyone, I am sure. Thanks for being so empathetic about what we go through and helping us get through the maze.

Comment by Mary Ellen Gambon — August 19, 2020 @ 11:48 AM

It IS a maze with so many consequences it’s almost unbelievable. I guess the only way to deal is with the source itself and then each malady as it presents itself.

But Mary Ellen, you are such a brave soul to persevere with your advocacy and writing, despite your physical limitations.

Nothing can stop you when you’re on a roll! 🙂

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Comment by Phylis Feiner Johnson — August 19, 2020 @ 11:55 AM

- Thanks, Phylis! I have a good mentor! 😀
  
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  Comment by Mary Ellen Gambon — August 19, 2020 @ 2:39 PM
- Wonder who that is? 🙂
  
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  Comment by Phylis Feiner Johnson — August 19, 2020 @ 2:52 PM
- 😀 ❤
  
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  Comment by Mary Ellen Gambon — August 19, 2020 @ 5:01 PM

The October 2020 issue of Consumer Reports has a long article on headaches with an emphasis on migraines.

Comment by HoDo — October 13, 2020 @ 1:21 PM

Is this it HoDo?

Healthier Ways to Handle a Headache

https://www.consumerreports.org/headache/healthier-ways-to-handle-a-headache/

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Comment by Phylis Feiner Johnson — October 13, 2020 @ 1:28 PM

- It is. Came in my email with no url.
  
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  Comment by HoDo — October 13, 2020 @ 1:36 PM
- GREAT article. Everyone should read it!
  
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  Comment by Phylis Feiner Johnson — October 13, 2020 @ 1:39 PM
- I always treat a headache first with a glass of water. Sometimes that’s enough.
  
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  Comment by HoDo — October 13, 2020 @ 1:37 PM
- The article says: “For many headache types, keeping consistent mealtimes, bedtimes, and wake times can help, as can making sure you’re staying hydrated by drinking plenty of water. ‘It sounds so basic, but it helps so much,’ she says. For migraines, a neurologist can also help you identify possible triggers, such as dehydration.”
  
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  Comment by Phylis Feiner Johnson — October 13, 2020 @ 1:42 PM
- Hah! What’s common knowledge amongst those of us with megrims finally goes mainstream.
  
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  Comment by HoDo — October 13, 2020 @ 1:59 PM

Wow, Phylis! Again, you pegged things the doctors did not put together. Of course, we knew about the sleeping, anxiety and depression. But the gastro problems? Bingo! An ever evolving disease with more puzzle pieces to solve.

Comment by Mary Ellen Gambon — October 14, 2020 @ 12:42 PM

WELL YEAHHHH !! Since I was 5 years old I knew something was the root cause of my petit mal seizures, from the foods & drinks I was having back then in the 1960’s. So here is 2021 and now my doctors are willing to have me in a hospital stay for 3 or more days until a seizure happens & caused from THE DIET I will eat while there ? Really,, WHY could that had been done 50 years ago ? Not for me then but for everyone, as I told my doctor this isn’t going to be done just for me, IF you find anything else with my seizure condition, that You can ALSO FIND A SAME OR SIMILAR CAUSE that 30 or more MILLION 1/2 of the people with seizures today, that THEY can benefit from. 50% of the people will only trust ideas given to them by doctors only, and at the same time not worry about anything else unless the doctor say to be concern about whatever, which with many of them, THEY KNOW and they wont tell you nothing UNLESS you ask them 1st if SOMETHING ELSE could help your condition. They may wait for decades before 1 of them will say YES, it is worth trying, BUT How do you know they tell you the TRUTH of those results from a NEW test ? even if the results may or may not stop or create a seizure. Oh what a ride of more than 60 years of how others WILL & DO judge you in what & how your life should be lived ”not by doctors only”, & HOW it is, with some who tries to make your life how it is going to be. God will do that for me, & better than I expect as I keep doing my part the right way.

Comment by James D — April 29, 2021 @ 11:33 AM

I started going stiff when I was 7yr old I’m now 50 since then I have taken fits minus 7yrs in between (when I got to drive not able now). In that time I have also had pituatory tumour (macro) now shrank with tablets for life. Polycystic ovaries, extradural brain haemorrhage (now shrank), and diabetes (type 2 insulin). Also have problems of tired all time, memory and cognitive impairment which over the time I did work for 27 yr but had to retire a couple of years ago due to health.

Comment by Clare — April 29, 2021 @ 5:01 PM

You brave, brave person. How did you weather all of that AND work for 27 years, Clare?

Comment by Phylis Feiner Johnson — April 29, 2021 @ 5:36 PM

This is so helpful. Since I developed epilepsy, I also have endured coma, migraines, a heart attack and asthma. People tend to think of it as just having seizures, but epilepsy is so much more complex. And the emotional distress and anxiety can be unreal unless your care is properly managed.

Comment by Mary Ellen Gambon — April 29, 2021 @ 5:52 PM

And sometimes managing it is more difficult than dealing with the seizures themselves.

Comment by Phylis Feiner Johnson — April 29, 2021 @ 6:14 PM

That is the truth! And, like you said before, the medicines have their own issues. Happy to see what you found on Onfi.

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Comment by Mary Ellen Gambon — April 29, 2021 @ 6:22 PM

I’ve been diagnosed as an epileptic since on month of age. Having scoliosis @ 12 & mostly fixed. High anxiety & depression. Granted disability due to anxiety, depression & epilepsy in 2015. Though in the state of Az epilepsy is not a disability. Doctors are thinking I have COPD now too. I am told I have a form of narcolepsy that makes me constantly fatigue so I do have to take a nap during the day now. I also have severe headaches & migraine that I take medicine for & a shot every 3 weeks for. I’m allergic to 15 medications, which mostly are antibiotics. I’ve worked mostly retail in my lifetime & started working at 19, had done some things under the table too like normal teens & kids have done as of babysitting in all when seizures weren’t at the highest peak. I at one time was seizure free for 8 yrs but was in an accident & it came back in 1999 .

Comment by Linda Bader — April 30, 2021 @ 10:03 AM

Oh my God Linda. How do you do it all? You must be one brave and indefatigable lady!

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Comment by Phylis Feiner Johnson — April 30, 2021 @ 10:21 AM

Epilepsy Talk