Epilepsy Talk

Hormonal Imbalances and Seizures in Women | November 25, 2019

Many women with epilepsy have asked their doctors about the connection between seizures and hormones, but not every woman has seen her concerns given the attention she’d hoped for.

Although it is not very well understood at this point, there are scientifically documented connections between seizures and hormones that not all physicians are educated about.

What are hormones?

Hormones are chemical substances formed in organs and glands that travel through your body and through your bloodstream.

They control muscle growth, heart rate, hunger, the menstrual cycle and many other functions.

They generally don’t cause seizures, but can influence their occurrence.

Some women with epilepsy experience changes in their seizure patterns when their hormones are fluctuating.

There’s a dynamic relationship between hormones, brain function, and seizures.

The brain is the seat of the body’s hormones and regulates the release of the major sex hormones — estrogen, progesterone, and testosterone.

These hormones, in turn, provide feedback to the brain and control the amount of hormones released at different points in time.

Research has shown that seizure discharges in certain brain areas can alter the output of hormones from the brain, and sex hormones can influence how the brain works.

For example, estrogen has been shown to increase seizure activity, while progesterone can have anti-seizure effects.

Seizures that are most likely to be affected by hormonal changes are partial seizures that involve the temporal or frontal lobes of the brain.  

However, hormonal associations may also be seen with generalized seizures. 

The temporal and frontal areas of the brain are closely connected to the hypothalamus and pituitary glands of the brain, which control the release of hormones.

Seizure activity may influence levels of hormones in the body, and the levels of estrogen and progesterone in the body can affect seizures.

And even though not all seizures are caused by hormones, they still can influence their frequency.

Is there a connection between seizures and hormones?

Yes.

Hormones are crucial systemic players and act at different sites of the entire body, including the brain.

The brain is not only the target of hormone action, but also serves as the “conductor” of the “neuro-endocrine symphony”.

Changes in neuronal activity, such as seizures in people with epilepsy, may affect hormonal regulation and secretion.

In turn, hormones modify susceptibility to develop seizures.

Also, antiepileptic drugs and hormones can have a direct interaction.

Hormones may alter seizure threshold, change the frequency and severity of seizures.

Are all seizures caused by hormone changes?

No.

Hormones generally do not cause seizures but can influence their occurrence.

For example, puberty is a time when hormones are stimulating body changes.

It is not unusual for certain kinds of seizures to disappear at puberty, while other seizure disorders may start at this time. 

Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods.

This condition is called “catamenial epilepsy.”

What do the sex hormones do?

Sex hormones have several functions…

Primarily, they control and maintain our reproductive systems.

They also have an influence on muscle mass, bone strength, emotions, and behavior.

In fact, sex hormones begin to influence brain function before birth, as early as a month or two after conception!

Research shows that the female hormones, estrogen and progesterone, act on certain brain cells, including those in the temporal lobe, a part of the brain where partial seizures often begin.

Estrogen excites these brain cells and can make seizures more likely to happen.

In contrast, natural progesterone can inhibit or prevent seizures in some women.

Findings also indicate that women who have seizures coming from the temporal lobe often have more reproductive disorders.

They may include: polycystic ovaries, early menopause and irregular (or no) ovulation.

How do I find out if I have hormone-related problems?

Women who have special concerns about seizures and hormones should obtain a referral to a specialist, either a neurologist or a neuroendocrinologist (a neurologist with training in hormone disorders and their effects on brain function).

If you suspect that hormones play a role in your seizures, talk to your physician or the nurse who helps monitor your seizures.

Blood tests of certain hormone levels and of your seizure medication may provide helpful information.

Additional tests, such as a pelvic ultrasound, may also be recommended to rule out other causes for menstrual irregularities.

Some suggestions:

1. Request a referral to a specialist. Some family doctors aren’t educated about the link between hormonal imbalances and seizures. A specialist will be better equipped to handle your concerns.

2. Track your seizure patterns. Many patients suspect a hormonal link to their seizures, but haven’t tracked the occurrences of those seizures. Keep a monthly log and track the date, time, length and frequency of your seizures.

3. Consider any recent hormonal changes. Before visiting a specialist, look for any hormonal patterns on your seizure log. This may include increased seizure frequency before your menstrual cycle or with the onset of menopause.

4. Pay attention to times of stress. Experiencing stress can trigger hormonal imbalances in your body. Chart times of stress and their effect on your seizures.

5. Explore treatment options. Although experimental, there are options for treating seizures caused by hormonal imbalances. Women can take progesterone supplements to reduce seizures. Also, some women find success by undergoing a hysterectomy, which eliminates the menstrual cycle and hormonal imbalance.

Awareness of how hormones can relieve or exacerbate seizure frequency and severity, as well as of how seizures and epilepsy may significantly affect reproductive and sexual function by interacting with hormone secretion and metabolism is key.

And identifying hormonal influences on seizure patterns may lead to a better understanding of treatment options for seizure control, which is important for optimal seizure management throughout a woman’s life.

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Resources:

https://www.epilepsy.com/living-epilepsy/women/all-women/hormones-and-epilepsy

https://www.webmd.com/epilepsy/guide/your-changing-hormones#1

https://www.epilepsy.com/living-epilepsy/women/all-women/hormones-and-epilepsy

http://www.cf-epilepsy.com/women-hormones-seizures/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2818554/

https://www.activebeat.com/your-health/women/6-signs-of-hormone-havoc-in-women/?utm_medium=cpc&utm_source=google&utm_campaign=AB_GGL_US_DESK-SearchMarketing&utm_content=g_c_179097237047&cus_widget=&utm_term=hormonal%20imbalance%20in%20women&cus_teaser=kwd-299998681&gclid=CjwKCAiA5qTfBRAoEiwAwQy-6bT4rnpkX7xe90_WYccdU4GT-jF66UaL-DRNhYo5rh49a_-8r-MSjRoC5PYQAvD_BwE

https://www.reference.com/article/hormone-imbalance-9a9a9a4ddf721a31?aq=hormone+imbalance+in+women&qo=cdpArticles

 


69 Comments »

  1. Some neuroendocrinologists (did I spell that correctly?) will deal with this, but not all. Assuming you can even find one to talk to.

    Also, referring back to your post about salt: electrolytes interact with hormones interact with synapses. It’s this big complex web, and it’s always changing, which is part of what makes balancing what you ingest difficult on any given hour of any given day.

    Liked by 2 people

    Comment by HoDo — November 25, 2019 @ 10:57 AM

    • If only the docs would recognize the importance of this and actually do something.

      For those who didn’t read it:

      Epilepsy and Electrolytes

      https://epilepsytalk.com/2019/09/12/epilepsy-and-electrolytes/

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 25, 2019 @ 11:11 AM

      • It’s my experience that most doctors don’t know what to do and the research is slow in coming. (My eye doctor is the most knowledgeable. Go figure.) What we can do for ourselves is try to keep aware that whatever we ingest may increase or decrease the possibility of a seizure, and accept or reject the risk. So time-consuming, so often tedious, but worthwhile.

        Liked by 2 people

        Comment by HoDo — November 25, 2019 @ 1:49 PM

    • Thank you HODO for that!! I will keep that in mind when I meet with my neurologist on December 6. 😊🙏🏼🦅💞

      Liked by 1 person

      Comment by Kathy S.B — November 25, 2019 @ 2:57 PM

  2. Annecdotal evidence suggests the majority of male neurologists still don’t want to admit to the hormone/seizure connection yest alone discuss it. And scarily there’s reports of a lot of female specialists even wanting to downplay it. If you don’t have a doctor- specialist or GP who will even acknowledge the fact, then what?

    Like a number of other women I know, my seizures suddenly got worse when I hit my 40s, and that turned out to be the start of peri-menopause, ie a major shift in hormone levels. I’d never had catamenial seizures- or clusters- my whole life and suddenly was having clusters every time for several years, then they suddenly stopped. Now I’m wondering what’s going to happen next. Many years ago I read in a book (!) that menopause can make seizures better/worse/stay the same so it’s a waiting game for us just like everything else with epilepsy I suppose, but hormones really are adding insult to injury

    Liked by 2 people

    Comment by Katie — November 25, 2019 @ 2:42 PM

    • Unfortunately, we don’t know what peri-menopause, menopause or post-menopause will bring.

      At least with catamenial seizures, there’s a time frame, but we’re not so lucky (???) now.

      All of your points are good ones. But unfortunately, they’re questions not easily answered. 😦

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 25, 2019 @ 3:22 PM

    • Often women are encouraged to eat more soy during menopause, but it’s worth noting that soy – and other foods high in estrogen, as well as estrogen-based medications – can increase the probability of seizures.

      Liked by 2 people

      Comment by HoDo — November 25, 2019 @ 3:56 PM

    • Often women entering menopause are encouraged to eat more soy products. But soy, which contains a lot of estrogen, as well as medications that contain high levels of estrogen, can increase the probability of seizures. It pays to keep a diary. There’s an estrogen-migrained connection as well.

      Liked by 2 people

      Comment by HoDo — November 25, 2019 @ 4:01 PM

  3. Goodafternoon Phylis 😊. Yes I used to find I had the toughest challenge around that time of the month and my medications we increased just for that week. Now with the life cycle change (menopause) I find that’s when everything hit the roof really bad!! Oddly NO SEIZURES THOUGH!!!!! That was the realization of the generic vs brand name medications and everything that was happening with me. Oddly now it’s been a bit of teeter tottering but still no seizures. Mind you apparently it takes time to re-adjust. Makes me wonder if menopause has something to do with this? Is so then maybe it’s time for neurologists to starts to think a bit deeper or change the medication is needed. Especially if a person has been on the same medication for all their lives. SIADH is still beginning to become a new thing for some doctors to realize as well. I just truly hope if my neurologist is as intelligent as he should be he doesn’t lack common sense as well and thinks of the patients who wellbeing in order to completely help the patient help themselves.

    Liked by 1 person

    Comment by Kathy S.B — November 25, 2019 @ 2:55 PM

    • I think, in your case, the catamenial seizures went away with menopause.

      Some are not so lucky.

      But your drug reactions probably came from a hormonal shifts, that happily, you discovered.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 25, 2019 @ 3:25 PM

      • I’m just wondering what that would mean? They had me on the wrong medications as well for 5 years!! I caught it and had it changed myself and then told my family doctor as well. But something did happen during the change back. The first couple of days were EXCELLENT!! But then it feels like it just turned into an uphill battle from there!! No seizures yet, but the numbness did return. Almost makes me think it’s time for a change in medications now!! Yesterday was THE FIRST DAY IN OVER A YEAR when I could feel it was time to take a nap and a rest!! But I did find doctor prescribed ibuprofen 600mgs helped with the tingling and numbness but my pharmacist was saying their “back ordered” on the ibprophen so I have to wait until February or even March now!! The off the shelf “ibprophen or Advil” just didn’t seem to do the same thing as the prescribed ibprophen even though my pharmacist says there’s no difference

        Liked by 1 person

        Comment by Kathy S.B — November 25, 2019 @ 3:33 PM

      • 600 MG of ibuprofen back ordered until February or March? That’s outrageous!

        Have you considered mail order from Canada?

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 25, 2019 @ 3:39 PM

      • In all honesty I never thought of that? May I please ask how to do that? Thank you. I will admit even I was surprised when I was told that as well!!

        Liked by 1 person

        Comment by Kathy S.B — November 25, 2019 @ 3:42 PM

      • If I knew how to do that I would have done it a long time ago!! I must admit I SAID THE SAME THING!!!!!!! Sometimes I think it’s the pharmaceutical business or even trade deals between countries. Thank you Phylis and please have a very good day today 😊💗

        Liked by 1 person

        Comment by Kathy S.B — November 25, 2019 @ 3:49 PM

      • I don’t think they did Phylis. Or maybe there was too much change too fast in my medications. It almost makes me scared or even know what to take now?

        Liked by 1 person

        Comment by Kathy S.B — January 26, 2020 @ 8:03 PM

  4. Out of curiosity is their a medication that does help an female with epilepsy who’s going through menopause with the numbness and tingling. Like possible medication change?

    Liked by 1 person

    Comment by Kathy S.B — November 25, 2019 @ 3:03 PM

  5. That’s okay Phylis 😊🦅💗. It just made me curious because I heard “gabapentin” helps with that issue but I’m not sure that’s all. Thank you

    Liked by 1 person

    Comment by Kathy S.B — November 25, 2019 @ 3:35 PM

  6. In Canada certain provincial governments are trying to force our people to take cheaper drugs called “BIOSIMILARS”. I’m not so sure that’s such a good thing. But the problem is the cost of certain medications is outrageous!! Makes me wonder what is happening with all of our medications for epileptics, gastrointestinal, arthritis patients and diabetic people as well. Everything always comes back to our stomachs

    Liked by 1 person

    Comment by Kathy S.B — November 25, 2019 @ 4:13 PM

  7. Thank you Phylis 😊. Talk about the PHARMACEUTICALS BECOMING A MONOPOLY I don’t think even our doctors and NEUROLOGISTS are aware of!!!!!!! It just appears as drug company’s or governments decides to make changes to the way we receive our medications some of us can’t handle it and that should be taken into account as were being told there’s a drug shortage. Who would of ever thought of A DRUG SHORTAGE IN THIS DAY AND AGE!!

    Liked by 1 person

    Comment by Kathy S.B — November 25, 2019 @ 8:42 PM

    • I think our doctors are well aware of it.

      And surprise, surprise, many of them get kick-backs.

      It’s the pharmaceutical companies that are driving this train.

      Just follow the $$$. 😦

      Like

      Comment by Phylis Feiner Johnson — November 26, 2019 @ 10:26 AM

      • Hello hope everyone is good i have a Q .
        I have epilepsy all my life , i was wondering if i can get on natural hormone cream. Thank you.

        Liked by 2 people

        Comment by Sonia g — January 3, 2020 @ 4:46 PM

      • There are not many studies looking at HRT and epilepsy, and all of the studies have very small numbers of women. This means there is still not enough information about the risk of seizures when taking HRT. More research is needed.

        HRT and epilepsy medicines

        In some women, some types of HRT can cause them to have more seizures than usual. There may be effects of HRT on your epilepsy medicine. For example, HRT containing estrogen can lower the levels of lamotrigine in the blood and increase the risk of seizures. If you take lamotrigine and want to take HRT, your doctor should discuss these risks with you.

        If you decide to try HRT, your doctor may help you consider the best type for you, or they may refer you to a specialist for advice.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 3, 2020 @ 6:19 PM

  8. my neuro just yelled in anger, Female fantasies, shut up!!

    Liked by 1 person

    Comment by Gail Barry — November 26, 2019 @ 5:32 AM

    • 😦 😦 😦

      Like

      Comment by Phylis Feiner Johnson — November 26, 2019 @ 10:42 AM

      • There is a “Patients’ Bill of Rights,” which varies, I think, by State. I saw with horror that where I live, there is no right to be treated with respect.

        Liked by 1 person

        Comment by HoDo — November 26, 2019 @ 11:04 AM

      • The Patients Bill of Rights is reported to be universal.

        I know this sounds lame, but could you contact your local epilepsy foundation about this?

        Or can you report the hospital?

        Like

        Comment by Phylis Feiner Johnson — November 26, 2019 @ 12:04 PM

      • To who would one report a hospital, I wonder. Must think that one through. I don’t believe there is a universal Bill of Rights yet.

        Liked by 1 person

        Comment by HoDo — November 26, 2019 @ 1:13 PM

      • Try contacting your State Department of Health Services.

        Or perhaps:

        The Empowered Patient Coalition

        https://empoweredpatientcoalition.org/report-a-medical-event/report-a-hospital-or-facility/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 26, 2019 @ 2:34 PM

      • Or how about a “HUMAN RIGHTS OR POSSIBLY AMNESTY INTERNATIONAL”? That is SO WRONG!!!!! Because they don’t realize how much even our loved ones depend on their opinion and valued expertise!! In my case I would be MORE UPSET ABOUT WHAT THEY DO TO MY HUSBAND, CHILDREN, FAMILY, AND FRIENDS!!!!!!! Sometimes I feel as though they should take empathy classes once a month to remember not only are we humans, but so are they!! And this could happen to them as well in the blink of an eye too!!

        Liked by 1 person

        Comment by Kathy S.B — January 18, 2020 @ 5:19 PM

  9. WOW!!!!!!! I always try to make it a point to never bring my family, friends or even sometimes my husband and children in with me. I’m kind of thinking this time is going to have to be an exception to that rule. BUT I WILL TELL YOU I had an epitologist try and put me on the “No Name Keppra” about 5 years ago and when I got home I did my research on it and because of my past (with myself and temper) and all of the suicides in my own people I declined to try it!!!!!!! So I called him back to inform him and he phoned me back (yes on the day of my 20th anniversary) and while our families we all here he began to scream it me for almost an hour until my husband came in and grabbed the phone and hung it up!!!!! Primarily for that reason I NEVER WENT BACK!! Thank god neither my husband nor my families heard!!!!!!! So I do believe even neurologists/epitologists can abuse their powers and become abusive as well. That is NOT A GOOD THING WHEN WE ARE SUPPOSED TO WORK TOGETHER!! I’m so sorry that happened to you!! 😨😢

    Liked by 1 person

    Comment by Kathy S.B — November 26, 2019 @ 10:06 AM

    • When a doctor goes against your “wishes” or something you know goes against your body chemistry, it is time to stand up and protect yourself.

      Only you know your body best.

      And it was a smart thing to go to another epileptologist, if this one had no regard for your body.

      However, I always recommend taking another person with you to a docs appointment. As a second pair of eyes and ears.

      You never know what they’ve seen and you haven’t.

      Don’t leave them out.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 26, 2019 @ 10:48 AM

  10. Goodafternoon Phylis 😊 I hope your having a very good day today 😊. There were a couple of things I wanted to ask and possibly say 😊. I AM GETTING HELP FROM THE “DANNY DID FOUNDATION” TO GET A SEIZURE WATCH!!!!!!! YAY!!!!!!!!!!!! 😁😁😁😁😁😁😁😃😃😃😃😃😃😃. The foundation contacted me the other to notify me of their assistance!! I was SOOOOO HAPPY I WAS LITERALLY JUMPING FOR JOY IN A REAL TOUGH START TO A NEW YEAR!!!!!!! Secondly: I was wondering I am being slowly weaned on to Lyrica. So far so good after one week!! I’m hopeing I can be weaned off of the Dilantin completely and then have to the tegretol slowly removed as well. I was just curious why is it that neurologists are nervous to help or even speak to epileptic women going through or just finished menopause??! Now is there a way to slowly wean ourselves off of Dilantin after 41 years use if we feel the long term negative affects beginning to happen to us? And how? Thank you and please take care and have a VERY GOOD DAY TODAY!! 😊🙏🏼🦅😇💞

    Liked by 1 person

    Comment by Kathy S.B — January 18, 2020 @ 5:13 PM

    • Congratulations on your new Embrace watch. I’m sure you’ll love it.

      The Embrace2 – Newly Cleared by the FDA – with New Advantages for You

      https://epilepsytalk.com/2019/03/05/the-embrace2-newly-approved-by-the-fda-with-new-advantages-for-you/

      As for the med cocktail…some meds work best together and not as monotherapy. So that could be one of the reasons.

      Your neuro may not be certain of how you’ll respond hormonally. That’s another possibility.

      And if they ramp you down s-l-o-w-l-y, they can assure that you’re adjusting and/or make any necessary changes.

      I don’t suspect weaning you off of Dilantin would be any different.

      But these are all guesstimates — I’m not a doctor or pharmacist.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 18, 2020 @ 6:08 PM

      • Thank you Phylis and the “DANNY DID FOUNDATION” 🙏🏼🦅😇💞😘. Maybe now I can start to make myself get more active without my husband, children or friends worrying so much about me!! But it’s a matter of ensuring people are educated and AWARE OF SAIDH IN EPILEPTIC!!!!!!! I know it’s a scary thing topic for EVERYONE INVOLVED in and EPILEPTICS LIFE!! But I ALWAYS SAY “ITS BETTER TO BE KNOWLEDGEABLE, HONEST, SINCERE AND COMPASSIONATE!! Than to be SORRY, UNEDUCATED, NOT KNOWLEDGEABLE, NOT HAVE COMPASSION OR UNDERSTANDING AND CHOOSE TO STAY IGNORANT OF WHAT IT IS!! It COMPLETELY SURPRISED MY HUSBAND AND CHILDREN when I had to take the time to properly explain to them MY BIGGEST FEAR AS AN EPILEPTIC and why I ALWAYS STAY PAINFULLY HONEST AND SINCERE (ALMOST PAINFULLY SOMETIMES) WITH THEM AND THE PEOPLE I LOVE AND CARE FOR!! I felt WORSE for them THAN MYSELF!! Oddly

        Liked by 1 person

        Comment by Kathy S.B — January 18, 2020 @ 6:18 PM

      • Not oddly at all.

        It shows your deep love and concern for them. For YOU, it’s all about THEM.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 18, 2020 @ 7:06 PM

  11. Thank you Phylis 😘. However that’s another way YOU HELP BRING AWARENESS TO EVEN OURSELVES!!!!! And I will FOREVER BE GRATEFULLY THANKFUL TO YOURSELF AND FOUNDATIONS SUCH AS THE “DANNY DID FOUNDATION” AND EVERYONE FOR COMING TOGETHER TO HELP EDUCATE AND SUPPORT ONE ANOTHER!!!!! And then OUR LOVES ONES!! 😘🙏🏼🦅😇💞😘. Also to think a year ago I was COME AND GO AS I PLEASED! And now ITS A WAY DIFFERENT STORY!! BUT I WILL GET BETTER!!!!!!! I just pray THE FEAR, IGNORANCE, STIGMA OF SOCIETY TOWARDS EPILEPTICS CHANGES IN MY TIME!!!!! I know as odd as it sounds I feel most safe in my own little town than I do in the only real big mall we have in the nearest city to me!! It’s sad how it takes some medical professionals, you and other epileptic groups to make SOCIETY IN GENERAL KNOWLEDGEABLE OF EPILEPSY AND THEIR IGNORANCE DUE TO FEAR OF ONE OF US HAVING A SEIZURE. Or for some even possibly being thrown in jail because they had a seizure. Makes me wonder what would be the best way to TEACH PEOPLE TO LOOK FOR THE SIGNS OF ONE BEFORE THEY THROW THEM IN JAIL OR STIGMATIZE THEM!! For some of us that even includes family and doctors and neurologists and epitologists (goodness I hope I spelt that right). Thank you. I always think of my younger brother (me and my husband raised) when he went to highschool. Because he was aware of another younger lady (then himself) who had a seizure during lunch hour. All his friends just stared at her and some laughed until he got upset and went to help her. Then he left and came home crying afterwards. When I was finally able to calm him down he explained to me what happened, what he did to help her and then with his friends and why he came home. My instant thought was “BOY HOW THINGS HAVE CHANGED FROM MYSELF TO HIM IN 10 YEARS!! He ended up being her escort to her HighSchool graduation 😘🙏🏼🦅😇💞

    Liked by 1 person

    Comment by Kathy S.B — January 18, 2020 @ 7:30 PM

    • Kathy, you might appreciate this article:

      Who’s at Fault?

      https://epilepsytalk.com/2019/04/13/whos-at-fault/

      Like

      Comment by Phylis Feiner Johnson — January 18, 2020 @ 10:04 PM

      • World leaders and society sure enjoy or reap the benefits of what was once the smartest man in the world “Albert Einstein”. Shame on this world!! They should know better!! On the Flip side maybe we need to teach them that again in a different century 😘

        Liked by 1 person

        Comment by Kathy S.B — January 18, 2020 @ 11:34 PM

      • Kathy, Einstein was not the only brilliant and accomplished person with epilepsy.

        The list below may inspire you.

        Epilepsy Hall of Fame

        https://epilepsytalk.com/2009/09/13/epilepsy-hall-of-fame/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 19, 2020 @ 10:49 AM

      • Goodmorning Phylis 😊. Lol he was just an example. I like to actually use athletes when I have to make people think and there’s LOTS OF THEM!!!!! My point was society and SOME OF THE MEDICAL COMMUNITY’S PROFESSIONALS ignorance of not know or almost fear of knowing and hearing the truth very quickly puts them in the position of looking or coming across as foolish. I was months to see a neurologist who seen me for not even 10 minutes. He not only wanted to put me KEPPRA but just did a physical and no eeg’s, mri’s or ct scans at all!! I COULD NOT BELIEVE THAT!! Then he asked me “what medication works for you then?” Lol 😂. How was I supposed to know the medications I’ve only ever been on three my whole life!! Now I have to wait another 6 months to see him again????? Lol. The world powers as they may be would very quickly try and help if it was their wife, daughter, mother or female loved one!! Maybe it’s time for them to sincerely make sure the help is there for us when we all need it instead of making us take drugs that aren’t good for us or our babies. Because they obviously had a mom too!! Just a thought. Thank you Phylis and please have a very good day today and know I GREATLY APPRECIATE YOU AND YOUR WISDOM, FRIENDSHIP AND HELP!! Be well 😘🙏🏼🦅😇😘

        Liked by 1 person

        Comment by Kathy S.B — January 19, 2020 @ 11:34 AM

      • Goodmorning Phylis 😊. Lol he was just an example. I like to actually use athletes when I have to make people think and there’s LOTS OF THEM!!!!! My point was society’s ignorance of not either wanting to become educated, compassionate, caring they won’t get anywhere. There’s a “POD CAST” they can even go to called “TALK ABOUT IT!” THE PODCAST then maybe people would begin to realize that or even on “YOU TUBE” although that one can get a bit technical. I guess what I meant to say is not even my own pharmacist would listen to me until I had to bring another friend in with me and after the pharmacist had overlooked my file for 5 years and put me on GENERIC MEDICATIONS when it was written in BLACK AND WHITE that I am to have NO GENERIC MEDICATIONS!! There was even a local doctor who told me to get a ball to squeeze (STRESS BALLh it when I felt I needed too!! I think the friend who brought me into emergency that day almost threw it at him!! But didn’t thank god/creator! However she did dig in my bag and ask him which one he liked? The football or the baseball? Nobody epileptic, family, friends or even strangers should have to go through suffering the stigma of the ignorance of some medical professionals or anyone because we already had to learn the “art of suffering from seizures and still being okay 👌”. They could learn a lot from all of us if they only asked in thoughtful caring manner. 😘

        Liked by 1 person

        Comment by Kathy S.B — January 19, 2020 @ 11:56 AM

      • Goodmorning Phylis 😊. Lol he was just an example. I like to actually use athletes when I have to make people think and there’s LOTS OF THEM!!!!! My point was society’s ignorance of not doing anyone any good at all!! One time I went to a HUGE CONVENTION WITH OUR SCHOOL BOARD AND EDUCATION MINISTER!! There were at least almost 1500 people there. One of the people who got up to speak asked everyone to clap their hands and then stop and close them tight!! I did exactly that. When he was finished he asked all the people who had the right thumb over their left thumb to put their hands up. Next he asked everyone who had their left thumbs over their right thumbs to put their hands up. When my table looked at me they realized my thumbs were side by side!!!!! I thought “OH CRAP”!! Then he asked those of us who had our thumbs side by side to stand up and there were only about 10 of us in the whole convention Center who put our hands up. Lol he jokingly told us “we were the dumb group of the hall”!! Then he explain what it meant if a person had their right thumbs over their left and what they were strong and and which side of the brain the people are strongest at. He then went to the left thumbs over the right thumbs and the same thing. Then he asked those of us who had our thumbs side by side to stand up. I did (VERY RELUCTANTLY)!! He then said “those people who had their thumbs side by side are the leaders of the pack because smartest people in here!! For you are able to utilize both sides of your brains”. My friend looked at me and I never said anything THERE!! I sat down. When we were alone I had to explain to her i May have been right or left brained however due to my epilepsy my brain had no choice but to learn how to let the side of my brain that wasn’t injured to make up for the side that was!! I never viewed it as right or left brained because we are all human with individual strengths and weaknesses. My weakness is epilepsy which actually makes me the strongest. 🙏🏼🦅😇😘😘😘😘😘

        Like

        Comment by Kathy S.B — January 19, 2020 @ 12:15 PM

      • Right = creativity. Left = analytical. Both sides = ambidextrous.

        But as you said, when you have epilepsy, it hardly matters.

        You just want your brain to work. Brilliance is academic.

        And YOU are strong.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 19, 2020 @ 12:54 PM

      • Thank you Phylis 😘. I just chuckled because I really don’t like being in a position such a that unless I really have to be!! Your very right I just wanted and still want my brain to just plain old work!! Funny how it’s my right temporal lobe that has the injury and yet the left side of my brain is actually larger than my right side. Plus my right side work harder than the left side of my brain!! Weird hey?

        Liked by 1 person

        Comment by Kathy S.B — January 19, 2020 @ 1:07 PM

      • Funny how I don’t drink alcohol because of my medications, I don’t gamble because of the lights on the machines, I don’t take marijuana because I promised my old people and grandma I wouldn’t and I just try my best to completely avoid drama if possible!! But yet in my culture everything I was taught by my old people and all the medicinal herbs and medications I was taught to use I can’t (according to the medical professionals) due to interactions of the medication with what I was taught to do and pick!! Yet marijuana is now legal and used as a medicinal property for epileptics. Wow!! Lol and we’ve had it all this time and their just realizing it now!!

        Liked by 1 person

        Comment by Kathy S.B — January 19, 2020 @ 1:13 PM

      • 🙂 🙂 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 19, 2020 @ 1:24 PM

      • Goodmorning Phylis 😊. Lol he was just an example. I like to actually use athletes when I have to make people think and there’s LOTS OF THEM!!!!! My point was society’s ignorance does more harm than good. I like Orin Devinsky too!! However that may have taken a turning point now as well!! The one I found who hit the nail on the head was “JOKUBAS ZIBURKUS”!! Or maybe it was how he was able to use a simple almost drum beat on a piece of wood to almost explain how a seizure sounded!! When I watched that on YouTube I couldn’t believe it!! I had to tell my friends in the medical profession to watch it!! There was something about it that was able to help me almost help them understand a seizure!! However at the same time there are also things he may claim that aren’t necessarily right either. Just an example.

        Liked by 1 person

        Comment by Kathy S.B — January 19, 2020 @ 12:37 PM

  12. Seems like we need to keep teaching them in every century. ALL the time. Non stop.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 19, 2020 @ 10:36 AM

  13. From what you’re saying Kathy, it seems to be “patient heal thyself”.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 19, 2020 @ 1:01 PM

  14. Ya isn’t that true!! I wanted to mention I did see a naturopath and was given a prescription for cbd at the lowest possible level!! However something in me still keeps preventing me from filling it out. Maybe it was the promise I made to my old people and grandma? But I really do appreciate the schooling THATS given to the patients and I appreciate the openness of the doctor and people on site. Lol I guess I’m a little bit “CHICKEN”!! Lol 😂

    Like

    Comment by Kathy S.B — January 19, 2020 @ 1:34 PM

  15. If I may please ask if you have any idea how medications interact with marijuana? And are positive or negative reactions? I know lots of my friends who have epilepsy have all come out and told me to try it!! However it appears to be a promise made DECADES AGO to my grandma and great grandma’s that keeps stopping me for some reason. On the flip side I also hear a lot say there’s no medication left for them to take anymore? Wow!

    Liked by 1 person

    Comment by Kathy S.B — January 21, 2020 @ 9:51 AM

    • I don’t know how how medications interact with marijuana.

      I just know, that some people were able to taper down on their meds, and some even discontinued them after being on medical marijuana.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 21, 2020 @ 10:21 AM

      • Okay THANK YOU PHYLIS! I guess that was a major concern for me. But I am also thinking the doctor and educators on site also probably would never put me in any position that may harm me even more. I hope 🙏🏼🦅🙏🏼

        Liked by 1 person

        Comment by Kathy S.B — January 21, 2020 @ 1:09 PM

  16. The kind of marijuana you might use depends on what kind of epilepsy you have. In California there are many neurologists who have experience with specific strains of bud. Your best bet is to talk with a medical expert – NOT the vendor.

    Liked by 2 people

    Comment by HoDo — January 21, 2020 @ 10:08 AM

    • Exactly. My husband found out (the hard way) that vendors don’t have a clue.

      He walked up to the counter and the guy behind the counter said: “So what do you want?”

      Of course he didn’t have a clue.

      So, he got a little of this and a little of that to the tune of $180!

      And, I’m sorry to say nothing worked.

      The problem is that few people are schooled in marijuana.

      So if you’re lucky enough to have a consultant at the dispensary (like in Colorado), that’s great.

      If not, you’re on your own.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 21, 2020 @ 10:18 AM

      • To clarify my earlier post on marijuana: going into a dispensary is like walking into a greengrocer. There may be dozens, even hundreds of products from which to choose.

        Some strains of marijuana may make your seizures worse. I have temporal lobe seizures, and my choices of strains is limited to two or three.

        If you are using it as medicine, get a medical person involved – if not a neurologist, then a neurological nurse practitioner. Your first question should be, “How many prescriptions have you written for pot.” and then, “Tell me about the outcome.”

        If you choose to experiment, have a non-user nearby who can drive you to the ER if needed.

        Liked by 2 people

        Comment by HoDo — January 21, 2020 @ 10:40 AM

  17. I agree!! Wow it’s almost easier to just keep picking my poison.

    Liked by 1 person

    Comment by Kathy S.B — January 21, 2020 @ 5:16 PM

    • Time to ask for a referral to a neuroendocrinologist oh I hope I spelt that right!! Enough is enough!! PREFERABLY A FEMALE ONE!! To whom I hope knows better and keeps an open mind. Lol be kind of hard to see me in 10-15 minutes though!! Lol

      Liked by 1 person

      Comment by Kathy S.B — January 26, 2020 @ 9:46 PM


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    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.

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