Epilepsy Talk

Medical Marijuana — It’s Here to Stay… | May 19, 2019

Let’s face it. The time has come.

Even the FDA has opened its eyes with new clinical trials.

Although the AMA chooses to keep their heads in the sand. For now.

It used to be popular to debate the merits and dangers of medical marijuana.

For example, it could lead to addiction. Like cocaine. (Oh please!)

But now, there’s clinically proven scientific proof, with more to come…

“After 4,000 years of humans taking cannabis for epilepsy, we have scientific evidence it works.” — Orrin Devinsky MD, Harvard University, on results from his team’s late-stage clinical trial of cannabidiol to treat Dravet syndrome.

And that’s just the tip of the iceberg…

Ever since Dr. Sanjay Gupta — a practicing neurosurgeon — used his CNN special “Weed” to show how CBD cannabis medicine helped a six-year-old child with Dravet Syndrome reduce her seizures from 300 per week to just a few per month, doctors, patients and their families have been clamoring for access.

(CBD — or Cannabidiol — is a compound in cannabis that has medical effects but does not make people feel “stoned”.)

Here’s how it works…

Medical researchers believe cannabidiol provides therapeutic benefit by interacting with receptors in the brain and spinal cord. Including interaction with many other neurotransmitter/neuromodulator systems, for a reach that extends nearly throughout the body.

Moreover, researchers say current knowledge of the cannabinoid system suggests the existence of other cannabinoid receptors yet to be discovered.

The proof is unmistakably present. Especially for those with drug resistant epilepsy.

Take the story of Regan Engelhardt…

After experimenting with different strains and CBD ratios, Regan Engelhardt’s daily seizure frequency fell from 50 seizures per night down to five.

Before cannabis, her seizures dramatically altered her ability to walk, sleep, eat, or drink. She had been hospitalized for dehydration as a result.

According to her mother, the pharmaceutical medications delayed her ability to walk until the age of 2 and left her “catatonic.”

Currently, Regan’s cannabis medicine has allowed her to be weaned off one pharmaceutical medication, has increased focus, and is able to sleep through the night.

“You see so much more light back in her eyes” her mother Suzie says.“ Just a couple of weeks ago I wondered if she would ever come back.”

“In the coming months, if the FDA is comfortable about how things are going, there will be a number of senior epileptologists in major university centers throughout the US, each treating a couple of dozen patients with various epilepsies,” said Dr. Geoffrey Guy, MD.

The debate is over. It’s time to get down to business.

NOTE: Each state has its own guidelines regarding the cultivation, possession and use of medical marijuana.
To find information about each state’s rules, regulations and standards go to http://norml.org/legal/medical-marijuana-2

Medical Frequently Asked Questions http://norml.org/marijuana/medical/item/medical-frequently-asked-questions

Articles of Interest:

When Cannabis Goes Corporate http://www.nytimes.com/2014/05/25/business/international/when-cannabis-goes-corporate.html?emc=edit_hh_20140527&nl=health&nlid=27745593&_r=0

Canada’s First Cannabis Vending Machine Starts Operation http://www.collective-evolution.com/2014/05/08/canadas-first-cannabis-vending-machine-starts-operation/

Cannabis Helping Children with Severe Epilepsy http://www.wakingtimes.com/2012/07/17/cannabis-helping-children-severe-epilepsy/

Dr. Sanjay Gupta’s Pot Confessional Gets Global Headlines http://www.cnn.com/2013/08/09/health/gupta-weed-reaction/

Too High? Medical Marijuana Dispensing Machine’s Stock Increases 3,000% http://venturebeat.com/2012/11/17/too-high-medical-marijuana-dispensing-machine-companys-stock-increases-3000/

To subscribe to Epilepsy Talk and get the latest articles by email, simply go to the bottom box of the right column and click on “Follow”

Resources:
http://medicalmarijuana.procon.org/view.resource.php?resourceID=000881
http://thejointblog.com/breaking-fda-approves-trials-cannabis-based-epilepsy-medicine/
http://www.medpagetoday.com/MeetingCoverage/AMA/43043?xid=nl_mpt_guptaguide_2013-11-20&utm_source=guptaguide&utm_medium=email&utm_content=mpt&utm_campaign=11
http://www.medicaldaily.com/fda-approves-marijuana-based-epilepsy-drug-use-kids-clinical-trials-261998
http://www.wakingtimes.com/2012/07/17/cannabis-helping-children-severe-epilepsy/

 


53 Comments »

  1. I’m curious about marijuana for my epilepsy. I’m a lucky epileptic who has well controlled epilepsy because of keppra and tegretol. My only problem is the tegretol is giving me low sodium levels in the blood. My neurologist is wanting to reduce the amount of tegretol which puts me back in the danger zone where I feel seizures coming on. Does anyone else have any ideas?

    Liked by 1 person

    Comment by Eve Quigley — May 19, 2019 @ 10:54 AM

    • Yes, you might try medical marijuana.

      Have you read the article: The Great Debate — Medical Marijuana

      https://epilepsytalk.com/2019/05/15/the-great-debate-medical-marijuana/

      There are some fabulous insights in the comments.

      Like the ones from Tom. (Near the bottom of the comments.)

      “Terpenes are what guides him to which hybrid will work best. Terpenes are what make lemons and oranges and grapefruit have their odor. When you smell a strain and it is right for you, your mouth actually waters. All you naysayers need to do research. You can start by going to leafly.com and looking up the strains. By looking at each tab they describe all the effects of each strain and what they are good for. As for dosage less is more. You smoke a half a joint and see how you feel. And if you have CBD oil on hand and you feel it’s too much, you take CBD oil which negates the effect of the THC . Mother nature in bet wisdom provides both in the same plant as a guard against too much physco activeness.”

      I think you should start with his suggestion, and go to http://www.leafly.com first.

      Like

      Comment by Phylis Feiner Johnson — May 19, 2019 @ 11:22 AM

    • First of all where do you live? If you live in a legal state get your card. Secondly what type do you have? 3rd Do you also experience insomnia, anxiety, depression? For most young people the Charlotte’s web strain which is all CBD 0.7 % thc or lower is good for say under 14 years old but as you grow older you need THC to work in harmony with the CBD. So you would lean towards Indica strains with low THC content and high CBD
      Which hits the body much more heavily than getting you high in your head. Your muscles all relax and you feel depending on the strain, relaxed euphoric , happy , giggly, if experiencing 8ns9mnia and anxiety and depression there are strains that deal that as well as epilepsy all in one. Smoking or vaping is preferred due to peoples metabolism. Easier to control the dosage by following the less is more rule. 1 puff at a time until effects reached . Go to leafly.com and 3xplore the strains which are as follows Sativa which are clear headed highs, that are cerebral, euphoric, giggly, good for depression ,anxiety, appetite ect. Then indica strains which are felt more in the body and basically come from a lineage of Afghanistan growers . Then you have Hybrids which are the 2 strains cloned together to create even more powerful medicine.

      Liked by 1 person

      Comment by Tom — May 19, 2019 @ 11:31 AM

      • Tom, you’re a godsend.

        I did refer Eve to your comments in the previous article, but THESE are even more helpful for a beginner!

        Like

        Comment by Phylis Feiner Johnson — May 19, 2019 @ 11:35 AM

      • Goodmorning Phylis 😊. WOW!! Until NOW I HAVE ALWAYS BELIEVED MARIJUANA WAS A “NO NO”!!!!!!! However AFTER WHAT IS HAPPENING NOW (ESPECIALLY WITH MY STOMACH HURTING SO EXTREMELY AWFUL, I CAN’T EAT!!!!!!) it has left me almost feeling like “I’M GOING CRAZY WITH THE PAIN AND STARVATION”!!!!!!! I haven’t been able to eat since 1.5 weeks ago because my stomach and intestines (they thought appendicitis, but I’m too old) and “IMPACTED BOWELS” I’m at the point of FELLING LIKE MAYBE I AM OR I AM A “Hypochondriac”!! I was in emergency the second day in a row because it HURT SO BAD I WAS KEELED OVER!!!!!!! I WANT TO SWEAR AT THE DOCTOR (but I didn’t) however he sure made me feel like I was INCOMPETENT AND OVERREACTING!!!!!!! I haven’t been able to eat in almost a week and a half!! I started looking at my medication and I COULDN’T BELIEVE THE DOCTOR HAD ME UP TO 22.5 pills a day a year ago!! I VERY GRADUALLY CUT IT DOWN TO 18.5 over a year and now down to 12.75 pills a day. ITS THE MEDICATION THAT’S KILLING ME!!!!!!! I told my husband and some friends “NO WONDER WE HAVE AN OPIOD DRUG EPIDEMIC!!!!!!! THEY JUST KEEP GIVING ME MORE AND MORE MEDICATION AND I CAN’T KEEP UP ANYMORE!! THE DOCTORS ARE KILLING ME!!!!!!!”. I was on tegretol 1600mgs a day, Dilantin 800mgs a day, magnesium 40mg, trazadone .50mg, Calcium 500mg, clobazam 20mg, ferrous gloconate (iron), folic acid 1mg, and ibprophen 600mg a day!!!!!!! And the doctor said it was still in my head!! I’ve refused to try marijuana and my doctor is “ANTI-MARIJUANA” however MAYBE IT IS TIME TO CONSIDER MY OPTIONS NOW!!!!!!! Thank you 🙏🏼🦅😇❤️. SOME DOCTORA IN ALBERTA, CANADA DO NOT SERIOUSLY THINK THAT MAYBE SOMETIMES 40 YEARS OF MEDICATION CAN TAKE ITS TOLL!!!!!!!! THANK YOU I WILL ALWAYS BE THANKFUL FOR YOU AND THIS BLOG!! Take care ❤️

        Liked by 1 person

        Comment by Kathy S.B — May 19, 2019 @ 12:08 PM

      • That’s an awful lot of drugs. Even the number you’ve weaned yourself down to.

        Before you try marijuana, I suggest you might try one of the anti-epilepsy diets. Especially with your stomach problems.

        Three Anti-Seizure Diets That Could Change Your Life…

        https://epilepsytalk.com/2018/02/15/three-anti-seizure-diets-that-could-change-your-life/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — May 19, 2019 @ 1:12 PM

    • I also have low sodium levels, low blood pressure and low sugar levels lol

      Liked by 1 person

      Comment by Kathy S.B — May 19, 2019 @ 1:38 PM

  2. Hello my name James. I’ve had Epilepsy since I was as kid. I didn’t know what was really going on with me. I would wake out of it and didn’t know what happens or what I was doing. Add I got older they got worse. One night I couldn’t get women up from one and the EMT had to come get me. I lost 2 days in the hospital. When I finally woke I asked where am at?  I had no idea what happened. When they did test the Doctor said that I had tremendous seizure spikes around my brain. I had no idea what that meant. People called the one I has called a Grandma Seizure. My dog ward trying to let it be known that something was going on with me. He would come to me then go to another room barking then come back to me. I heard he did this until I was checked on. He’s an awesome smart dog. His name is Thor. He’s half a Lab and half Boxer.I had another one a week later, but was able to get elme up out of it. This has affected my life so much. I need support and want to assist others that’s going through this. I have trembles in both hands now and get none wanting pity from work. Im on medication, but it seems like if I skip it that another one will try tipp come on. That’s what I wad told anyway. So I set reminders everywhere sho I don’t miss a dosage. I would like to meet others with this to talk face to face. I would le to make new friends with Epilepsy. If you would like this as well, to get to know one another please reply  back and let me know.

    Thank you, 

    Jsmes

    Liked by 1 person

    Comment by jjayp75 — May 19, 2019 @ 11:51 AM

  3. I’m glad it is here to stay for those that it helps…. It’s too bad it’s not an option for me. It will help certain seizures I have. However, all it does for me is triggers the others.

    Liked by 1 person

    Comment by Justin Shaffer — May 19, 2019 @ 12:04 PM

  4. Glad to help, its experience although they call it anecdotal. Intellectuals love to dictate from their marble palaces to us peons what we need. All we are to them is a cash crop to be planted and harvested. There is no way any scientist can tell you the effects of any given drug without having experienced the effects themselves. That’s why they tell epileptics to man up and deal with the side effects INSTEAD of figuring out how to compound the drug and remove the side effects. The side effects generate more revenue by prescribing other drugs to counteract the side effects which in turn cause other side effects.
    Take the opioid epidemic, what they do not tell you was that it was created on purpose and then when they decided to pull the prescriptions they created the problem of people turning to the streets to buy them and or using heroin which is cheaper. Most of these deaths came from heroin mixed with fentanyl and not oxycodone itself. They also do not tell you that most of these same people who became addicted are actually suffering from depression and that anti depressants are more placebo effect than effective and that’s why they use the oxy over the anti depressants. Also take note that mostly all anti epileptic drugs are also used as anti depressants except for SSRI’s. And each one rewires your brain and cause withdrawal syndromes. Stevie Nicks from Fleetwood Mac has said that withdrawing from klonopin was worse than Herion. Benzos are the devil . Go to benzobuddies.com or .org not sure which to find out about benzo withdrawal syndrome which doctors refuse to aknowledge.

    Liked by 1 person

    Comment by Tom — May 19, 2019 @ 12:05 PM

    • You’ll enjoy this:

      What do Stevie Nicks and Whitney Houston Have In Common?

      https://epilepsytalk.com/2014/06/01/what-do-stevie-nicks-and-whitney-houston-have-in-common/

      Like

      Comment by Phylis Feiner Johnson — May 19, 2019 @ 1:06 PM

    • This’s why I love this resourceful & informative social network website, ordinary people searching for answers to their medical difficulties & supporting each other, exchanging experience on how & what’s the best way to remedy their medical difficulties, Epileptic seizures, medications & the cruel side effects of their medications.
      While I’ve never sought nor tried medical marijuana to control or reduce my seizures, it’s inspiring to see, read, hear & know that there’s light across the tunnel, helping people to live a normal life far beyond the social misconceptions & legal rerestrictions to medical marijuana.
      It’s long overdue to fight & eradicate this nightmare, Epilepsy.
      And if medical marijuana can help save these broken lives, social misconceptions & legal dictatorships should NOT stand on the way to condemn & torment the victims of Epilepsy into more seizures & hardships.
      Enough is enough!
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — May 19, 2019 @ 1:23 PM

      • Thanks Gerrie. I certainly agree. On all points.

        That what we’re here for.

        To educate, inform, share, care, comfort and help one another understand their condition as well as other options.

        Like

        Comment by Phylis Feiner Johnson — May 19, 2019 @ 1:30 PM

  5. I apologize the doctor purged my stomach and I’m now just taking the Dilantin 400mg, tegretol 1600mg, clobozam 20mg, pentoprazole magnesium 40mg, trazodone HCL 45mg, lactulose 40ml/day, one multi-vitamin, and tramadol HCL 37.5mg & acetaminophen 325mg for pain.

    Liked by 1 person

    Comment by Kathy S.B — May 19, 2019 @ 1:06 PM

    • Kathy, I feel sorry for you, going through all these unfortunate predicament.
      You should have a Lawyer going after the Doctor & the hospital, seeking recovery for medical malpractice.
      May God bless your heart to stay strong.
      I lost trust on “Doctors & hospital establishments” long time ago, therefore I keep my sister on “emergency contact list” for immediate contact, before any stupid doctor starts experimenting his practice on me.
      And I believe that’s why I’m still alive today.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — May 19, 2019 @ 1:56 PM

      • THIS IS THE MOST PAINFUL THING I HAVE EVER FELT IN MY LIFE AND I AM HUNGRY!!!!!!! Thank you 🙏🏼❤️. I wish I was able to find THE ONE DOCTOR FROM EMERGENCY!! He said the medical professionals are BEGINNING TO REALIZE “EPILEPTICS ARE BEING DECEITFUL OR LYING!! And they may have a name for it now!! SSADH DEFICIENCY. He’s the ONLY ONE WHO HAS EVER GIVEN ME HOPE!! Except my old family doctors because they had a personal vested interest in epilepsy. Their daughters are epileptics too!! ❤️

        Liked by 1 person

        Comment by Kathy S.B — May 19, 2019 @ 2:35 PM

      • Since SSADH deficiency seems to be one of those rare “orphan” diseases, it would make sense that everyone is scratching his/her head.

        Bravo to the doc who discovered and defined it for you. (I could barely even read the research!)

        Like

        Comment by Phylis Feiner Johnson — May 19, 2019 @ 4:17 PM

      • Wow we have to talk Phylis!! So I ended up back In Emergency again!! Even after being purged!!!!!!! This time I actually got to see my REAL DOCTOR!! Because my left leg was going numb!! She very quickly put me on an I.V. And ran bloodwork!! Turned out my blood sugar levels as well as my electrolytes and blood pressure were VERY LOW THAT TIME!! It felt like my head was going to EXPLODE!! I was getting dehydrated and LACKING SODIUM!!!!! I went for my ultrasound and the doctor who seen me THE FIRST TIME IN EMERGENCY (who told me to “get a ball and squeeze it, that it was all in my head”) phoned me back and said there was nothing!!!!!!! This time even my left arm felt tingly and now my right foot!! It IS SO WIRED BECAUSE WHEN I LAYDOWN EVERYTHING GOES AWAY!!!!!!! But the minute I get up IT ALL STARTS AGAIN!!!!!!! So I phone MY REAL FAMILY DOCTOR AND CAN’T GET IN UNTIL JUNE 4,2019!!!!!!! Even my husband is beginning to question me now!!!!!!!!!!!!!!!!!!!!!!!!!!! I know what I’m feeling and what it is IS NOT GOOD AT ALL!!!!!!! But in all HONESTY THE FIRST DOCTOR (who blamed disregarded my husband and daughter and asked how much I drink and what kind of drugs I’m taking and wouldn’t talk to my husband afterwards because my husband and daughter got upset due to the fact I don’t drink or take any other drugs other than the ones they give me) even TREATED ME AND STILL TREATS ME LIKE SOMETHING IS WRONG WITH ME IN MY OWN HEAD!!!!!!! I don’t know what to do now?? I JUST MAKE MYSELF GET UP AND DO YARD WORK EVEN IF IT HURTS!!!!!!! I guess that’s what we get for “SMALL TOWN DOCTORS” or a “EPITOLOGIGIST” not a real neurologist!!!!!!! Now what? I don’t know what to do except keep drinking “POWERADE” (with salt) and TRY AND EAT A LITTLE!! And wait until JUNE 4,2019!!

        Liked by 1 person

        Comment by Kathy S.B — May 28, 2019 @ 6:08 PM

      • Oh Kathy, I feel for you. No Doctor until June 4th? That’s a week from today.

        How can you IMAGINE low blood sugar levels, electrolytes and blood pressure?

        My guess (and I’m no doctor), is that you have a blockage somewhere.

        Have you had an ultrasound? An MRI? (I’ve lost track in all this mess.)

        Like

        Comment by Phylis Feiner Johnson — May 28, 2019 @ 6:18 PM

      • I’ve almost had everything under the sky and planets, but you know NO MRI!!!!!!! In ALL HONESTY I WAS THINKING A BLOCKAGE OR STONES OR EVEN SOMETHING MY GRANDMA PASSED AWAY FROM!!!!! Because they had to remove some of her “SMALL AND LARGE INTESTINES”. I was (her and my great grandparents and great aunties and uncles baby) and with her until she passed away. Plus SHE SWORE EVERYONE TO SECRECY AND NEVER TO TELL ME!!!!!!! But I’m pretty sure it was called “CHROANS”. I don’t want my extended to know or children because I don’t like attention and I did mention that to the doctor as well. Lol I just to be prepared and at least know what’s going on!! Because of what I went and still go through (with my grandma) I DO WANT MY CHILDREN AND HUSBAND TO KNOW EVERYTHING!!!!!!! That way they never feel as though they are to blame 😘❤️. But if that’s it then THE DOCTOR SHOULD DARN WELL FIGURE IT OUT DARN QUICK!!!!!!! I’m about to turn 49 years of age and I’ve had epilepsy since I was a baby I guess, but the doctor didn’t find out until I was 8 years old. Oddly because he was a new doctor in town and his daughter was an epileptic too!!

        Liked by 1 person

        Comment by Kathy S.B — May 28, 2019 @ 6:49 PM

      • It could very well be Crohn’s, which is not hereditary.

        Crohn’s disease is an inflammatory bowel disease (IBD).

        It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.

        Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people.

        The inflammation caused by Crohn’s disease often spreads deep into the layers of affected bowel tissue.

        Crohn’s disease can be both painful and debilitating, and sometimes may lead to life-threatening complications.

        While there’s no known cure for Crohn’s disease, therapies can greatly reduce its signs and symptoms and even bring about long-term remission.

        With treatment, many people with Crohn’s disease are able to function well.

        https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304

        Like

        Comment by Phylis Feiner Johnson — May 28, 2019 @ 9:25 PM

  6. Oy. See above:

    Three Anti-Seizure Diets That Could Change Your Life…

    https://epilepsytalk.com/2018/02/15/three-anti-seizure-diets-that-could-change-your-life/

    Like

    Comment by Phylis Feiner Johnson — May 19, 2019 @ 1:15 PM

  7. He said it was SSADH DEFICIENCY HE IS SUSPECTING

    Liked by 1 person

    Comment by Kathy S.B — May 19, 2019 @ 2:25 PM

    • Succinic semialdehyde dehydrogenase (SSADH) deficiency is a rare inborn error of metabolism that is inherited as an autosomal recessive trait.

      In individuals with the disorder, deficient activity of the SSADH enzyme disrupts the metabolism of gamma-aminobutyric acid (GABA) and can cause a variety of neurological problems.

      About half of those affected experience seizures, difficulty coordinating movements (ataxia), and decreased reflexes (hyporeflexia).

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 19, 2019 @ 4:14 PM

      • OH REALLY? Is there a way to deal with that type of problem on our own. Lol so we can just eat. I told the doctor “okay then doesn’t that mean if my sodium is that low as well as my blood pressure and sugar levels that’s maybe an I.V. May help for “immediate assistance”? Or what can I do right now (OTHER THAN TAKE MORE PILLS) so I can at least eat and NOT BE IN SO MUCH PAIN?? He never gave me and answer and left. Then I was I have an ultrasound 2 weeks later. I still haven’t eaten and I’m starving!!

        Liked by 1 person

        Comment by Kathy S.B — May 19, 2019 @ 4:24 PM

      • You’re not going to like this answer:

        “A broad spectrum of antiepileptic medication has been used to treat this condition. While vigabatrin is an irreversible inhibitor of GABA-transaminase and thus inhibits the formation of succinic semialdehyde, it has shown inconsistent results in treatment of seizures associated with SSADH deficiency.” https://www.ncbi.nlm.nih.gov/books/NBK1195/

        Like

        Comment by Phylis Feiner Johnson — May 19, 2019 @ 4:29 PM

      • I wish I could do better or do SOMETHING to help you Kathy. 😦

        Like

        Comment by Phylis Feiner Johnson — May 19, 2019 @ 4:31 PM

      • OH WOW!!!!!!! SHUCKS I HAVE NO CLUE HOW TO EVEN SAY THAT WORD!! And I actually speak a SECOND LANGUAGE OR MAYBE THAT’S THIRD!!!!! Are my babies going to have it? Or could be why I am skinnier than all of them!! AND WERE A HUGE FAMILY IN ALL WAYS!!!!!!! I’ve never heard of it or have NO CLUE WHAT TO SAY!!!!!!!!!!! HOLY!!

        Liked by 1 person

        Comment by Kathy S.B — May 19, 2019 @ 4:39 PM

  8. It’s VERY RARE. That’s why it comes under the heading of NORD — National Organization of Rare Diseases.

    But my guess is that it’s a metabolic issue.

    Like

    Comment by Phylis Feiner Johnson — May 19, 2019 @ 4:51 PM

    • Hi Phylis. Thank you ❤️. Maybe that’s why my doctors CAN’T FIGURE OUT WHAT IT IS!! So how do we cope or eat or even get the sodium, sugar, fats, enzymes and PAIN AWAY FAST!!!!! If these doctors can’t figure it out!! OH I WISH I COULD FIND THAT DOCTOR THAT WAS ON THAT NIGHT!!!!!!! Funny how it takes one fill in doctor to come up WITH SOMETHING!!!!! Instead of MAKING ME FEEL LIKE ITS ALL IN MY HEAD AND CRAZY THINKING I’M A HYPOCHONDRIAC!!!!!!! Lol “SQUEEZE A BALL!!!!! LOL”

      Liked by 1 person

      Comment by Kathy S.B — May 19, 2019 @ 4:58 PM

      • Hi Phylis. I AM GOING TO TRY MY HARDEST TO FIND HIM!!!!!!!! I’m SO HURT AND YOU WOULD THINK IF I’M LACKING SODIUM THEY WOULD PUT ME ON AN I.V. AT LEAST!!!!!!! Oh I HOPE MY CHILDREN DON’T GET IT BUT I THINK I SHOULD AT LEAST BE GIVEN CONFIRMATION AND SOMETHING IN ME!! Darn what a let down!! Thank for everything and all the information Phylis and please have a very good day today 😘🙏🏼🦅😂❤️

        Liked by 1 person

        Comment by Kathy S.B — May 19, 2019 @ 5:07 PM

  9. I think this may be where an endocrinologist comes in.

    Like

    Comment by Phylis Feiner Johnson — May 19, 2019 @ 5:02 PM

  10. For what it’s worth, I just read a study:

    Intervention/treatment for Succinic Semialdehyde Dehydrogenase Deficiency

    Device: Transcranial magnetic stimulation (TMS)

    Device: Magnetic resonance imaging (MRI)

    Device: Electroencephalogram (EEG)

    Procedure: Bio-specimen Collection

    https://clinicaltrials.gov/ct2/show/NCT03758521

    Like

    Comment by Phylis Feiner Johnson — May 19, 2019 @ 5:08 PM

  11. Has anyone reported back the use of cannabis who suffers from Musicgenic seizures?

    Liked by 1 person

    Comment by Bob Hanson — May 20, 2019 @ 9:50 AM

  12. Not that I know of.

    Like

    Comment by Phylis Feiner Johnson — May 20, 2019 @ 11:17 AM

  13. Worldwide, laws need to change. It would be okay for me to take medical marijuana in Canada, but I can’t bring any of it anywhere, due to Canadian law and international law.https://travel.gc.ca/travelling/cannabis-and-international-travel
    Since I’m not interested in swotching and experimenting, cannabis does not seem like a viable treatment at this time.

    Liked by 1 person

    Comment by Marlyn — May 21, 2019 @ 3:05 PM

  14. Everyone’s different.

    They have different ideas and different circumstances.

    Sometimes it helps. Sometime it hinders. 😦

    Like

    Comment by Phylis Feiner Johnson — May 21, 2019 @ 4:10 PM

    • Ain’t that the truth? The funny thing is, I’ve spent most of my life treating things naturally. Until I couldn’t. This one got the best of me.

      Liked by 1 person

      Comment by Marlyn — May 21, 2019 @ 5:06 PM

  15. Well, it’s slowly changing here.

    (Medical marijuana is even legal in Pennsylvania!)

    Maybe soon the laws will relax there.

    One can only hope.

    Besides, BIG Pharma and the government don’t want to miss out on the $$$ opportunities.

    Like

    Comment by Phylis Feiner Johnson — May 21, 2019 @ 5:10 PM

  16. My job let me go yesterday because they thought I was too much of a liability. It tore my heart up on the inside. My insurance just stated just started today as well. So now I had to cancel my insurances today. This illness has really affected me mentally. I had to file though state today. I feel like less than a man now. Depression has really sunked in now, and I don’t know which step to take next. I have just thought about ended it all, but I know that it won’t solve anything. I just have to figure out what’s the next step to take in this life I’m having.

    Liked by 1 person

    Comment by jjayp75 — May 24, 2019 @ 9:55 PM

    • I’m really sorry to hear that. Life has thrown you a curve ball. The question is, which direction is it taking you? Time will tell. I hope you get the help you need.

      Liked by 1 person

      Comment by Marlyn — May 25, 2019 @ 1:30 AM

    • Jay, you will find a way through this terrible time.

      Here are some links that may help:

      Health Insurance — No-Cost & Low-Cost

      https://epilepsytalk.com/2017/08/17/health-insurance-no-cost-low-cost/

      Epilepsy — Top Financial and Medical Assistance Programs

      https://epilepsytalk.com/2019/03/19/epilepsy-top-financial-and-medical-assistance-programs/

      DEEPLY DISCOUNTED DRUGS WITHOUT INSURANCE

      https://epilepsytalk.com/2010/03/18/deeply-discounted-drugs-without-insurance/

      Like

      Comment by Phylis Feiner Johnson — May 25, 2019 @ 9:33 AM

    • Please have faith that something better is going to happen for you in your life. I became epileptic when I was 47. I had a successful hairdressing business and was happily working 6 days a week, long hours and then blammo…..epilepsy struck.
      My best friend Arlene had died 3 years earlier from brain cancer which began with the same symptoms. So I figured it was only a matter of time and I’d be joining her. I had a hard time believing that I had the garden variety of epilepsy at my age!
      I kept trying to work, even sold my business and tried to work with the new owner and I just couldn’t. So I came home and became very very depressed. I sat in my recliner for 6 months hardly leaving the house and then I thought screw this! I got a LOT of counseling from mental health to help build up my self confidence. I must admit I have a long way to go before I can say I am there…..but I am trying.
      I have created a home based business where to my surprise people actually want me to cut their hair! The pariah……epileptic because this was how I was feeling about myself!
      Every day isn’t perfect, but it is much easier to manage at home because I control the stress levels here.
      I pray for you that you will be able to navigate your way toward a new normal and find your self worth again…..because it IS POSSIBLE!

      Liked by 1 person

      Comment by Eve Quigley — May 25, 2019 @ 10:56 AM

  17. Thank you Marilyn. I guess I’m needing to know how are others with this issue are dealing with this? Having this has really did a180° to my life, and it’s so hard to except the changes life has given me with this. I get so worried about anxiety being so much that seizure might happen again. I don’t know when one occurs, but I try to do everything in my power to keep it from happening. I missed a medication dosage last weekend, and heard that I had one. It pissed me off so bad. So now I keep medication everywhere my and I have reminders everywhere now as well. I have family members that call to remind me. I still don’t know boys to take this as a positive. The only way I know to take is a hurtful negative change in my life. Now my mom is calling me wanting to know if I have taken my medication like I’m a little kid. It’s worse enough when others do it and now my own mom. It makes feel worse on the inside.i just don’t know how to take this, and I appreciate you all on here. Thank you.

    Liked by 1 person

    Comment by jjayp75 — May 25, 2019 @ 9:31 AM

  18. Eve, you are indeed a story of triumph and inspiration.

    Bravo to you for your courage and persistence.

    You are to be admired by all of us.

    Thank you for your story.

    Like

    Comment by Phylis Feiner Johnson — May 25, 2019 @ 10:59 AM


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

    Enter your email address to follow this blog and receive free notifications of new posts by email.

    Join 2,783 other followers

    Follow Epilepsy Talk on WordPress.com
    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

%d bloggers like this: