Epilepsy Talk

Antidepressants and Epilepsy… | January 23, 2020

For a long time, depression was thought to be a complication of epilepsy.

“People with a history of depression have a 3 to 7 times higher risk of developing epilepsy. This kind of information is forcing us to take a second look at the interaction between depression and epilepsy” said Dr. Andres Kanner, a Professor of Clinical Neurology and Director of the Comprehensive Epilepsy Center of the University of Miami, Miller School of Medicine.

Common pathways between depression and epilepsy might account for recent data suggesting that patients with a psychiatric history may not respond as well to medication or surgery for treatment of their seizures, he said.

Dr. Kanner and his colleagues studied 90 patients whose seizures failed to respond to anti-epileptic medication and underwent brain surgery to remove tissue that was the focus of the seizures.

Patients with a lifetime history of depression were less likely to become seizure-free, the researchers found. Kanner said that suggests depression could be a biological marker for a more severe form of epilepsy.

“Patients with epilepsy usually respond well to antidepression medication and with lower doses,” he said.

“There is a lot of misconception that if you use an anti-depressant, it will worsen the seizures. That is not really so.”

Kanner said a class of drugs called selective serotonin reuptake inhibitors, have proved safe in patients with epilepsy.

They include:

Zoloft
Paxil
Prozac

The incidence and prevalence of depression in the epilepsy population is difficult to establish, mainly because of the under-reporting and under diagnosis of depressive symptoms. Additionally, the diverse methodologies and sample populations used across studies yield drastically different study conclusions.

However, depression may have a major impact on the quality of life of patients with epilepsy, sometimes even more than the seizures.

Valproate and Lamictal tend to stabilize mood, for instance, while Lyrica has anti-anxiety effects, reported Dr. Kanner.

“These drugs definitely are being used more and more by psychiatrists to treat patients with a variety of psychiatric disorders, but primarily mood and anxiety disorders,” he noted.

What Are the Types of Antidepressants?

There are several types of antidepressants that improve depression. The major types of antidepressants include:

Selective serotonin reuptake inhibitors (SSRIs). SSRIs work by altering the amount of a chemical in the brain called serotonin.

Examples:

Celexa 
Brintellix
Lexapro
Paxil 
Prozac 
Zoloft 
Viibryd 

Serotonin and norepinephrine reuptake inhibitors (SNRIs) are another form of antidepressant medicine that treat depression by increasing availability of the brain chemicals serotonin and norepinephrine.

Examples:

Cymbalta 
Effexor 
Fetzima 
Ixel, Savella
Pristiq 
Tofenacin 

Tricyclic antidepressants (TCAs) primarily affect the levels of two chemical messengers in the brain, norepinephrine and serotonin.

Although these drugs are effective in treating depression, they can have more side-effects than other drugs. So, they typically aren’t the first drugs prescribed.

Examples include:

Elavil 
Desipramine 
Doxepin 
Imipramine 
Nortriptyline
Protriptyline
Surmontil 

Monoamine oxidase inhibitors (MAOIs).

MAOIs are most effective in people with depression who do not respond to other treatments.

They are also effective for treating other mental illnesses. Substances in certain foods like cheese and aged meats, and certain medications (like decongestants or some cough syrups) can interact dangerously with an MAOI.

Marplan 
Nardil 
Parnate 
Transdermal Selegiline (the EMSAM skin patch)

Although MAOIs work well, they’re not prescribed very often because of the risk of dangerous reactions. They can cause serious interactions with other medications and certain foods. Foods that can negatively react with the MAOIs include aged cheese and aged meats.

People taking this drug must adhere to strict dietary restrictions. For this reason these antidepressants also aren’t usually the first drugs prescribed.

Other medicines may be prescribed in addition to antidepressants, particularly in treatment resistant depression.

Here are examples of medicines that may be used to augment as an add-on to antidepressant treatment:

Anti-psychotic medications like Abilify and Seroquel can be used as an add-on to antidepressant treatment. Symbyax, a combination of the anti-psychotic drug Zyprexa and an SSRI (Fluoxetine), are approved for treatment-resistant depression.

Other medications:

Buspropion may be less likely to cause sexual side-effects than other antidepressants.
Remeron is usually taken at bedtime. Side-effects are usually mild and include sleepiness, weight gain, elevated triglycerides, and dizziness.
Trazodone is usually taken with food to reduce chance for stomach upset. Other side-effects include drowsiness, dizziness, constipation, dry mouth, and blurry vision.

Wellbutrin, is associated with a higher risk of seizures and should not be used in people with epilepsy.

Benzodiazepines are very effective in the short-term treatment of anxiety and insomnia, but they should be avoided if possible, because they are among the most habit-forming (addictive) drugs legally available. They include:

Ativan 
Frisium 
Halcion 
Klonopin 
Librium 
Prosom 
Tranxene 
Valium 
Xanax 

These drugs also may temporarily reduce seizure frequency and intensity but, after someone takes the same dose for a period of weeks, the effect on anxiety, insomnia, and seizure control diminishes.

As the original anxiety or seizures return, there is a strong tendency for the patient and doctor to increase the dose, which again briefly reduces troublesome symptoms.

This cycle leads to a buildup of the dose to levels that can cause memory impairment, depression, tiredness, and other problems.

If the dose is then reduced, the real trouble begins: anxiety, insomnia, and seizures become more severe.

Finally, researchers are investigating new drugs to treat seizures and other conditions which may be useful for certain anxiety disorders, such as social anxiety disorder and general anxiety disorder.

Their exact role in the treatment of epilepsy however, is not clear.

To subscribe to Epilepsy Talk and get the latest articles, simply go to the bottom box on the right, enter your email address and click on “Follow”.

 

Resources:

http://www.ncbi.nlm.nih.gov/pubmed/18408525

http://www.cnn.com/2010/HEALTH/04/13/depression.drugs.suicide.risk/

http://www.livestrong.com/article/162514-anti-seizure-medications-used-for-bipolar-disorder-treatment/

http://www.webmd.com/depression/guide/optimizing-depression-medicines?page=2#2

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002598/

http://www.uspharmacist.com/content/d/feature/i/2181/c/37593/

http://www.anxietysecrets.com/loungeFrame-11.htm#Anticonvulsants

http://www.sciencedaily.com/releases/2005/02/050223144959.htm


94 Comments »

  1. May I add, from personal experience, that not all antidepressants work with all types of seizures. Paxil very nearly did me in, and the more I took (doctor’s orders), the worse things got, until I simply refused to take any more. I was gratified to see the phrase, “low doses.”

    Thank you for this information. Keep it coming, please.

    Liked by 2 people

    Comment by HoDo — January 23, 2020 @ 11:31 AM

  2. I was risperidone and citolapram and trazodone. Once I got my footing and began to really start feeling better I approached my family doctor and asked to be gradually weaned off of them because I felt mentally stronger. She helped me wean off the antidepressants once I felt better. However the one I did remain on was trazodone. Last last year I was finally able to wean off of that as well. However I did realize once the neurologist tried to put me on toperimate was that my pharmacist really pushed me to take it again. To make him happy I let him put it in my medication pack, but I never took it. I returned it later on and told my doctor I didn’t want it because it can also have a part in me dealing with hyponatremia and I’m trying to reduce the amount of medications I’m on not increase them. She agreed. That’s when I started the lyrica and began to very slowly withdraw from the tegretol by 400 mgs/daily. However I do find it almost begins to wear off at about 17 hours later. However I did get upset because it appeared to me that the doctor and pharmacist were all too happy to put me on antidepressants and that upset me even more than the stomachache. Almost felt like a quick fix or bandage. Plus simply because I was on antidepressants I couldn’t get life insurance on my own. But if I need it I do know where to turn because sometimes the chemistry in our bodies and life event occur that almost require to get a little bit of help for ourselves.

    Liked by 1 person

    Comment by Kathy S.B — January 23, 2020 @ 12:17 PM

    • I take Effexor XR. (Extended release) to help me over those humps.

      And talk therapy with a psychiatrist has been a life-saver for me.

      HE’S the one who controls my antidepressants.

      I found that my internist’s knowledge was very limited — to what the drug reps were pushing.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 23, 2020 @ 12:47 PM

      • I am very happy to hear your heard and helped with your feelings and heart in mind. It’s just bit upsetting how we as “epileptics” can be seen as incompetent or not being smart enough to know better. It’s the stigma of antidepressants that make people stigmatize what helps epileptics in ways even the doctors and friends can’t sometimes. Other times it’s just the “closed mindedness” of others who can hinder us with even realizing it. I have faced that too myself. My response was “just because we have epilepsy doesn’t mean we are weak minded, heartless or in compassionate, or cruel. Just we have a neurological issue. Diabetics can have neurological issues if their levels are low or too high.”

        Liked by 1 person

        Comment by Kathy S.B — January 23, 2020 @ 12:57 PM

      • There’s a stigma (for some) that says “epileptics are crazy”.

        Then there’s the stigma that says “if you take antidepressants you’re mentally ill”.

        Put those together and well…we don’t stand a chance. 😦

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 23, 2020 @ 2:08 PM

      • Given the way people with epilepsy are often treated by the medical profession, family, and the general public, it seems to me that depression is a natural and reasonable reaction. How about, instead of pills, some respect?

        Liked by 2 people

        Comment by Ho — January 23, 2020 @ 3:37 PM

      • YOU ROCK, HO.

        Aretha Franklin had it right: R-E-S-P-E-C-T!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 23, 2020 @ 4:31 PM

      • SWEET!!!!! 😊😇🦅🙏🏼💕

        Liked by 1 person

        Comment by Kathy S.B — January 23, 2020 @ 10:06 PM

      • WOW!!!!!!! Did you ever HIT THE NAIL ON THE HEAD THERE!!!!!!! I think the one I have issues with is is “ITS ALL IN THE MIND!!”. Well where and how can an epileptic access their mind when a person has a seizure? Or which part of the human body does the mind sit in? Sometimes even I’m left scratching my head with ignorance. Everyone is human and has faults or weaknesses in one way or another. We as epileptics DO STAND A CHANCE AS LONG AS WE STAND TOGETHER AND KEEP TEACHING THIS WORLD HOW TO BE HUMAN WITH LOTS OF COMPASSION, STRENGTH, PATIENCE, UNDERSTANDING LOVE AND FORGIVE NON EPILEPTICS FOR THEIR WEAKNESS OF NOT OPENING THEIR MINDS OR HEARTS!! 😊🙏🏼😇🦅💞

        Liked by 1 person

        Comment by Kathy S.B — January 23, 2020 @ 10:04 PM

      • Goodmorning Phylis 😊. Wow 😳 I’ve been on 25mgs once a day for a week of the Lyrica so far. I’ve been taken off of the clobazam and my tegretol and Dilantin were also bumped down. I have to say yesterday is the first day in 15 months I actually had to fight off a seizure!!!!!!! Makes me wonder if it was best hurting with the first line of medication I was on now? What an awful feeling and headache! I really am beginning to wonder if all of this change is worth it or not? Thank you and please have a very good day today and please take care of yourself 😊🙏🏼🦅😇💕

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 12:52 PM

      • The only consolation I can offer is sometimes it takes the body time to adjust.

        But, I do agree with you. I also think maybe the meds should have been adjusted one at a time.

        Is that what your doc did?

        Hoe you feel better, Kathy.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 24, 2020 @ 2:18 PM

      • She bumped my tegretol Cr down to 1200mgs from 1600mgs and also took me off of the prazosin 1mg/per day, and the clobazam 10mgs/per day. Then started me on 25 mgs/per day on lyrica so far. The pharmacist also wanted me to start 50mgs/per day of trazodone again!! Lol this is actually when I look at alternatives because At least it’s a natural alternative. However that can wait until I see my doctor in a week. This is honestly where the neurologist should be working with the family doctor, pharmacist and patient. There’s no “I/ME” in “TEAM”

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 2:42 PM

      • I agree. In a perfect world they would all be working together.

        But, that’s seldom the case. 😦

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 24, 2020 @ 2:50 PM

      • I think that’s the sad part 😔. Especially when we “EPILEPTICS” ALL TRY SO HARD TO HELP THEN HELP US HELP OURSELVES AND WELL BEING AND HEALTH!! Because having “epilepsy” is NOT A WALK IN THE PARK! Thank you Phylis and ALL INVOLVED IN YOU GROUP!! 😊🙏🏼🦅😇💞

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 3:15 PM

  3. THANK U FOR THIS IMPORTANT AND HELPFUL INFORMATION.I WAS PUT ON PAXIL BY MY FAMILY DOCTOR.MY NEUROLOGIST QUICKLY TOOK ME OFF OF IT.BECAUSE MY SEIZURES BECAME WORSE.SO NOW I SEE ALOT MORE OPTIONS.👍💟

    Liked by 2 people

    Comment by Angela carter — January 23, 2020 @ 12:30 PM

    • The options are endless. But you have to be vigilant and take care of your body. (Especially if side-effects come into play.)

      Better you should be put on antidepressants by your neurologist.

      HE knows the interplay between the antidepressant and your epilepsy meds. And can choose with greater knowledge and experience.

      But as always, what’s good for one, isn’t good for all.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 23, 2020 @ 12:53 PM

  4. Please explain to me & tell me WHY comments I want to make on your word press forum will not display ? My views & comments are all from my own circumstances that I have had over 55 years with seizures.

    Like

    Comment by jcdavis@hardynet.com — January 23, 2020 @ 1:11 PM

  5. “Kanner said a class of drugs called selective serotonin reuptake inhibitors, have proved safe in patients with epilepsy”
    I really wish people would stop saying ANY class of ANY drug has been proved safe for us. Yes, maybe they’ve worked out that certain drugs are generally ok to take if you have epilepsy, but given the individuality of this condition, those same supposedly ‘safe’ drugs could send some of us into status. And SSRIs do have a seizure contraindication unless that’s been changed recently (admitting to not looking for a few years).

    I’ve learned the hard way that any drugs with seizure contraindications aren’t good for me. My brain does not like them, they’re clearly a seizure trigger for me. So I’ve learned to triple check everything and refuse to take anything that has ‘seizure contraindication’ next to it. I know full well many others will be fine, but not me. However, the number of arguments I’ve had with doctors who INSIST it’s ‘safe’ for me because they have other patients with epilepsy who take it etc etc.

    I am well aware there is a time an a place- and a necessity- for some medications, but for goodness sake, just be aware that our triggers are so individual! Hopefully the meds you need will be fine. Just don’t EVER let any doctor tell you that ‘no, it definitely won’t affect your seizures’ because they cannot 100% guarantee that.

    I

    Liked by 2 people

    Comment by Katie — January 23, 2020 @ 3:36 PM

    • A very good point, illustrating that what’s good for one person, can be disastrous for another.

      Another reason why we have to be vigilant and do our own research.

      “Try and see” isn’t good enough!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 23, 2020 @ 4:26 PM

    • NICELY PUT KATIE!! 😊🦅💗

      Liked by 1 person

      Comment by Kathy S.B — January 23, 2020 @ 10:10 PM

  6. Just wondering when neurologists and seizure specialists will be able to treat the seizures and the depression together? The specialists I have seen treat the seizures and then refer me back to my primary care person for the depression which absolutely makes no sense I like her but she has no expertise in either one. It’s very frustrating 🙄

    Liked by 2 people

    Comment by Jody — January 23, 2020 @ 6:24 PM

    • I couldn’t agree more Jody!! I felt the exact same way too! In fact my husband ended up coming into my appointments with me just so he could tell her the exact same thing too!! Of course that was a former family doctor. I think the most frustrating part is being made to feel as though we are mentally incompetent instead of actually listening to us, and working with us. We are all human beings with feelings one way or another. I find for me my weak spot is probably when I’ve been made to feel as though I am the one who’s mental faculties are hindered on account of my epilepsy when maybe it’s theirs because of their fear of not willing to acknowledge and work with the patients and properly explain and listen to us.

      Liked by 1 person

      Comment by Kathy S.B — January 23, 2020 @ 10:18 PM

  7. There is such a thing.

    A neuropsychologist is a psychologist who specializes in understanding the relationship between the physical brain and behavior.

    Neuropsychologists have a doctorate in psychology and training in neuropsychology.

    https://www.healthline.com/health/neuropsychologist

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 23, 2020 @ 6:49 PM

  8. I agree, but on the other hand sometimes even that can work against us if we all have specialists that can only sit with us for 10-15 minutes.

    Liked by 1 person

    Comment by Kathy S.B — January 23, 2020 @ 10:20 PM

  9. BINGO!

    I read the new national average for medical visits is 12 minutes.

    Even though that statistic wasn’t specifically for neurologists.

    But any way you look at that, it’s horrifying.

    I’m scheduled for my annual physical. And Arthur is scheduled for his, 15 minutes after me!

    I guess we’re special. We get 3 extra minutes than the national norm. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 23, 2020 @ 10:32 PM

    • And the neurologist/EPITOLOGISTS/ and doctors wonder why we DON’T EVEN CARE TO SEE ANY OR THEM AT ALL!!!!!!! I waited ALMOST A WHOLE YEAR FOR A 10-15 MINUTE APPOINTMENT AFTER I FINALLY BECAME TOXIC DUE TO THE PHARMACISTS NEGLIGENCE OF PROPERLY READING MY FILE FOR 5 YEARS!!!!!!! And then wonder WHY WE HAVE PROBLEMS WITH OUR EPILEPSY!!!!!!!

      Liked by 1 person

      Comment by Kathy S.B — January 24, 2020 @ 3:20 PM

      • I became toxic on Dilantin. But that was many years ago. (When Dilantin and Pheno were the only game in town.)

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 24, 2020 @ 4:25 PM

      • I’m sorry to hear you went through this AWFUL ORDEAL OF TOXICITY AT ALL!! Nobody should ever have to go through this then have to wait to even see any doctor at all!! I have to wait for another week now just to see my family doctor. In the meantime help myself get through this week somehow. But I am STILL DETERMINED TO GET OFF OF SOME OF THESE MEDICATIONS!! Lol as long as it doesn’t kill me or my mind, body and brain. 🙏🏼🦅😇

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 4:32 PM

      • I couldn’t help myself. I was in a “deep sleep” for three days.

        But my step-father was a surgeon and he watched over me until I could get to NYC to see the neurologist.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 24, 2020 @ 4:38 PM

      • I NEED A DOCTOR IN MY GROUP OF IMMEDIATE FAMILY AND FRIENDS!!!!!!! ASAP!! I feel absolutely safest with them then I do even with the pharmacist now a days. Funny how I have to always bring one with me now just to see my pharmacist and doctors

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 4:42 PM

      • That’s not funny, it’s smart.

        The more advocates you can have around you, the better.

        Sometimes you can’t depend upon yourself to know it all, ask the right questions, or even understand the answers.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 24, 2020 @ 4:47 PM

      • Or YOU CAN AND YOUR NOT BEING HEARD OR BELIEVED!! But the last time I brought back the topiramate I knew I needed someone at least just for their support and the trust I know my friend had in me and I her. 🙏🏼🦅😇💞😘

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 4:49 PM

      • I’m SOOOO SORRY THAT HAPPENED TO YOU PHYLIS!!!!!!! Believe it not STEP FATHERS CAN BE THE MOST UNDERSTANDING AND HELPFUL I SWEAR!!

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 4:44 PM

  10. I agree that asking your primary care doctor for anti-depressant meds won’t help you much. They tend to prescribe for a general faceless population. As my sister says, “One size fits none.”

    Luckily, my psychiatrist is also a neurologist, with vast experience in both directions, as well as with alternative medicine. My insurance doesn’t cover his 25- or 50-minute office visits, but rarely do I have to “try this and see.” It works the first time. AND he seems to see me as a person, none of this writing a prescription before I’ve finished detailing the symptoms.

    Liked by 2 people

    Comment by HoDo — January 24, 2020 @ 8:02 AM

    • 25-50 minutes office visits. WOW!

      For all the reasons above, this doc sounds like a dream.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 24, 2020 @ 10:00 AM

    • Your a very lucky person!! 😊

      Liked by 1 person

      Comment by Kathy S.B — January 24, 2020 @ 4:26 PM

    • Lol I never asked. It was suggested by the pharmacist with consultation with the primary care doctor. The neurologist wouldn’t even go there. He never had time in his 15 minute visit as he ran out and I never seen him again

      Liked by 1 person

      Comment by Kathy S.B — January 24, 2020 @ 4:40 PM

  11. Just to register an opinion – the term “side effects” seems to mean, “Do not discuss this topic,” or “Do not complain about this.” If seizure meds cause you to grow an extra toe, that is an effect, IMNSHO, not a side effect.

    Liked by 2 people

    Comment by HoDo — January 24, 2020 @ 8:11 AM

  12. I think it’s the other way around. Dealing with epilepsy causes depression.

    Liked by 2 people

    Comment by Charleene — January 24, 2020 @ 1:23 PM

  13. I think epilepsy and depression are a two-way street.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 24, 2020 @ 2:20 PM

  14. I kind of agree in a way. However sometimes it almost seems as though it’s brought on by unexplained head spinning terminology an quick attitudes of some of the medical community as well.

    Liked by 1 person

    Comment by Kathy S.B — January 24, 2020 @ 4:29 PM

  15. When I would have a seizure, it felt like my head was spinning inside at 100 miles per hour.

    It was awful. I used to rip at my hair, trying to make it stop. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 24, 2020 @ 4:32 PM

  16. I almost don’t even want to move!! Or get out of bed!

    Liked by 1 person

    Comment by Kathy S.B — January 24, 2020 @ 4:37 PM

    • I totally understand, since I COULDN’T get out of bed.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 24, 2020 @ 4:40 PM

      • I was given something to have before I ate so I could eat and the spinning and stomach aches would stop. But I just prefer to use ginger 😊

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 4:45 PM

  17. ??????

    Like

    Comment by Phylis Feiner Johnson — January 24, 2020 @ 5:17 PM

  18. Apparently one can either void or even prevent and hinder the other medication from doing its job properly or at all. Or so I was told. Which is probably why there are so many new epileptic medications being put out there now that aren’t quite ready or proper. A lot of them still truly have unknown variables. But I always wondered if this medication fell under the category Psychogenic non epileptic seizure medication or not? Plus Dilantin and tegretol are more less fossils or dinosaurs now in terms of epileptic seizure medications. Even that I recently found out too!!

    Liked by 1 person

    Comment by Kathy S.B — January 24, 2020 @ 5:37 PM

  19. But for some people, Dilantin and Pheno are the ONLY meds that work. (Beats me!)

    While other people need to get off of them pronto because of bone, tooth or gum damage.

    One person reported losing most of his teeth. I have galloping gum rot, but I have a deep cleaning at the dentist every three months.

    But unfortunately, my beautiful, thick, long hair fell out. And I’ve had to wear it in a “bob” ever since. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 24, 2020 @ 5:56 PM

  20. I WHOLE HEARTEDLY agree with the teeth and gum part!!!!!!! I have have to have all my gums cut off on top and bottom both the inside of my mouth next to my tongue and outside of my teeth on at least 4 occasions since 1994!!!!! And now I TEETH BEING REMOVED OR BREAKING because of the overgrowth of gums onto my teeth or not growing at all and my teeth simply crack!! Also I have actually had a broken sternum twice and numerous other bones have problems simple because of Dilantin!! Which is ANOTHER REASON I WANT AND YEARN SO BADLY TO GET OFF OF THE DILANTIN AND TEGRETOL NOW!! Also I am even MORE HYPER VIGILANT AND NEVOUS OF MEDICATIONS THAT CAUSE HYPONATREMIA CAUSED BY THE TEGRETOL!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — January 24, 2020 @ 6:08 PM

    • That really stinks.

      Like

      Comment by Phylis Feiner Johnson — January 24, 2020 @ 6:12 PM

      • I REALLY DOES STINK AND IT HURTS LIKE BLEEP TOO!!!!!!! But I have also been on it for 41.5 years too!! And titrating off of it isn’t a VERY FUN EITHER!! Plus I don’t qualify for any lawsuits against phizer or any anything as well to help me fix my teeth or have dental implants put in so I can eat and chew properly!! Canadian residents are not allowed to participate in American lawsuits OR I WOULD!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — January 24, 2020 @ 6:19 PM

      • GRRRR…

        Like

        Comment by Phylis Feiner Johnson — January 24, 2020 @ 6:41 PM

  21. We’re all ready all having to live with the consequences of our illness and medications. The least the makers of these drugs is help us to be able to have teeth to at least eat with. Maybe I’m just a upset with the whole situation we all have to endure and go through just to live. Thank you for you support and words of wisdom Phylis and your group 😊. Just know you are ALL GREATLY APPRECIATED!! 😊🙏🏼🦅😇💕

    Liked by 1 person

    Comment by Kathy S.B — January 24, 2020 @ 7:25 PM

  22. Goodmorning Phylis I hope all is good for you, your husband and cat and everyone in your group 😊. Well I hate to say this to you I don’t think “LYRICA” will work either!! I have never had to fight so many seizures in a day before!! It seriously feels as though I had seizures all day yesterday!! Back to the drawing board. I wish their was a drug that resembled TEGRETOL Cr and Dilantin that was easy to find. However I did like the fact that the numbness did go away. But I think it triggered a state of almost having a seizures all day yesterday.

    Liked by 1 person

    Comment by Kathy S.B — January 25, 2020 @ 9:50 AM

    • Unfortunately AEDs are a crap shoot. And there are so many of them now.

      I kissed a lot of frogs before I found my “magical medicine mix”.

      (Lamictal, Effexor and Buspirone.)

      I hope things get better for you, Kathy.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 25, 2020 @ 10:29 AM

  23. Almost makes me wonder if I should go back to what worked and wait for my next appointment with the neurologist? Ya this “CRAP SHOOT” is simply beginning to like absolute crap!! It’s hard on the head and body. My poor husband asked to see my cheeks thismorning. I showed him and he was NOT A HAPPY CAMPER AT ALL!! Odd how I never had a seizure but it feels like I had LOTS!!!!!!! Thank you for your faith in sharing your “Magical Medicine Mix” Phylis 😊. I did catch up with my old doctor (the one who diagnosed me with epilepsy and put me on the tegretol and Dilantin) he said maybe I should look into keppra and tegretol. Apparently it’s working for his close family member. But he’s been retired for almost 1.5 decades now. Oh how I wish he was still a CERTIFIED DOCTOR!! Thank you and please have a very good day today and take care of yourself 😊🙏🏼🦅😇💕

    Liked by 1 person

    Comment by Kathy S.B — January 25, 2020 @ 10:39 AM

    • Keep a close eye on that rash, to make sure it’s not Steven-Johnson’s Syndrome — a rash and dangerous skin disorder.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 25, 2020 @ 12:26 PM

      • OH NO!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — January 25, 2020 @ 1:04 PM

      • It actually appears to be clearing up now. I’m on a medicated bandage for 3 weeks, but I do go back into homecare on Monday. So they can keep an eye on it. Talk about the most frustrating thing in the world!!!!! Well like you said off to my next “PICK YOUR POISON” next week!! Wow I haven’t had an actual grandmal seizure since October 2018!! Now I have to go through all of this just to make sure I DON’T HAVE ANOTHER ONE!!!!!!! Talk about FRUSTRATING!! Off to bed now. Thank you and please have a very good day today and take care of yourself Phylis 🙏🏼🙏🏼🦅😊💞

        Liked by 1 person

        Comment by Kathy S.B — January 25, 2020 @ 1:08 PM

      • May I please ask what Steve Johnson Syndrome is? Thank you

        Like

        Comment by Kathy S.B — January 25, 2020 @ 9:06 PM

      • Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal

        https://epilepsytalk.com/2018/11/19/stevens-johnson-syndrome-a-danger-for-those-on-dilantin-or-lamictal/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 25, 2020 @ 10:52 PM

      • Oh gees!!!!!!! I’ve never heard of it before. Thank you for your caring and most of all informatively teaching me something new today Phylis 😊. So I know you’ve been at least one today “THANK YOU AND I GREATLY APPRECIATE YOU AND ALL OF YOU HELP!!” 😊🙏🏼😇😘

        Liked by 1 person

        Comment by Kathy S.B — January 25, 2020 @ 10:57 PM

      • It actually appears to be clearing up now. I’m on a medicated bandage for 3 weeks, but I do go back into homecare on Monday. So they can keep an eye on it. But I have no clue what Steven Johnson Syndrome is?

        Liked by 1 person

        Comment by Kathy S.B — January 25, 2020 @ 10:43 PM

      • I’ll let you know how it goes tomorrow Phylis 😊 thank you for your WISDOM, GUIDANCE, HEADS UP AND MOST OF ALL CARING!! 😊🙏🏼🦅😇💗

        Liked by 1 person

        Comment by Kathy S.B — January 26, 2020 @ 11:55 PM

  24. Please be vigilant.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 25, 2020 @ 1:06 PM

    • I’ll be going in tomorrow to have my led look at again and I will make sure to look at my leg and ask some questions as well. That gives me another reason to ask for a different neurologist too. Maybe one who know about the various medications, side affects, neuralgia, Steven-Johnson Syndrome, and menopause and the effects of it on me!! So I can be better prepared without fear.

      Liked by 1 person

      Comment by Kathy S.B — January 26, 2020 @ 9:53 PM

  25. I’m kind of suspecting there was TOO MUCH CHANGE IN MY MEDICATIONS TOO FAST!!!!!!! Meaning there was too much withdrawn too fast for my body to be able to adjust to at such a rapid speed!! And YES talk about making an epileptic feel as though the epileptic is mentally unstable!!!!! I finally had to tell them “I’m here now so I could tell you myself in person and NOT WHEN I CAN’T HELP MYSELF AND YOUR GOING AFTER MY HUSBAND AND CHILDREN LATER BECAUSE I END UP BACK IN HERE WITH A GRANDMAL SEIZURE!!!!!!!”

    Liked by 1 person

    Comment by Kathy S.B — January 25, 2020 @ 1:34 PM

    • Oh, I feel for you Kathy. 😦

      I also suspect there was too much change too fast. But I’m no doc.

      Maybe that’s a good thing?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 25, 2020 @ 5:57 PM

      • Yes I think so. I am going to take my old medication dosage with the clobazam and the sleeping medication tonight (even though I slept for most of the day today) and stop the Lyrica. I liked it because it’s got rid of the numbness, but again it triggered unwanted almost seizures as well. Talk about a scary thing to go through. It’s been a long time since I had chewed up cheeks and an aching body!! So I slept most of the day after I was given lorazepam to calm me down. This seems to be the only way we learn I guess. I just don’t understand why I was made to completely stop the clobazam and go back on to trazodone which I weaned myself of to begin with? Thank you Phylis 🙏🏼🦅💞

        Liked by 1 person

        Comment by Kathy S.B — January 25, 2020 @ 9:15 PM

  26. Sometimes it isn’t that we have a mental problem. After today I almost felt like I was pushed to get upset and have someone make sure what was happening to me really was. They caught it the minute they did my blood pressure!! All I was trying to do was stop what I knew would happen if there was no medical intervention. Like a GRANDMAL SEIZURE!! We should never put in a position of feeling as though we begging for help when we know ourselves the best and are telling them. That’s so wrong. By deflamating our character does no good to us as epileptics. We don’t need nor want that for ourselves of spouses and children. That’s not good.

    Liked by 1 person

    Comment by Kathy S.B — January 25, 2020 @ 10:54 PM

  27. Seizures, menopause, depression – what a combination! Menopause changed the nature of my (temporal lobe) seizures to such an extent that neither I nor my doctors realized what was going on – for years. Also my reactions to drugs changed. How I wish even one doctor had been adequate. Not one paid attention to the whole person. So good luck to everyone who’s in this phase, and may your research and self-care be the best.

    I appreciate this forum and discussion more than I can say. Thank you.

    Liked by 2 people

    Comment by HoDo — January 27, 2020 @ 7:56 AM

  28. For those of you looking for neuroendrochonologists: it’s my understanding that UCSF (University of California at San Francisco) Medical Center will do second opinions remotely, via snail mail and Internet. Their epilepsy department is first rate. They do have at least one neuroendrochronologist.

    It costs, of course, but possibly it’s tax-deductible.

    I haven’t tried doing this, but it’s worth investigating, not only with UCSF but with any medical center that has a top drawer epilepsy department.

    Liked by 2 people

    Comment by HoDo — January 27, 2020 @ 11:06 AM

    • Thank you, HoDo.

      Brilliant advice again.

      Your input is very much appreciated.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 27, 2020 @ 11:11 AM

      • It’s my way of giving back and thanking you for all the good stuff you’ve given us.

        Liked by 2 people

        Comment by HoDo — January 27, 2020 @ 11:15 AM

  29. Thank you HoDo 😊💗. Well it looks like I was right!! The lyrica BACKFIRED!! It’s a no go!! On that note apparently I will be getting a female neurologist in Lethbridge who is more familiar with females, menopause and epilepsy!! So now I wait again for that appointment.

    Liked by 1 person

    Comment by Kathy S.B — January 27, 2020 @ 6:26 PM

  30. That’s progress!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 27, 2020 @ 7:11 PM

  31. Thank you Phylis 😊🙏🏼😂😇💞

    Liked by 1 person

    Comment by Kathy S.B — January 27, 2020 @ 7:29 PM

  32. Another thought on depression: sugar can be very addictive. Not just emotionally addictive (bad day, need treat) but physically. The downer after a sugar or carbo high can be severe, so that the cycle repeats. Seizures are more likely during stressful times, and the ups and downs of sugars and carbs are definitely stressful. So to take the edge off depression, consider replacing carb calories with protein calories. It has made a difference for me.

    Liked by 2 people

    Comment by HoDo — January 28, 2020 @ 8:46 AM

  33. Re nutrition and depression and whatnot. You might take a look at the (controversial) book, Nutritional Essentials for Mental Health, by Leslie Korn. While neither epilepsy nor seizures are listed in the index, she writes extensively about depression and about hormones and what to eat or take as supplements.

    She is a big fan of butter. When I was in the middle of a nasty temporal lobe seizure brought on by a eye drops, of all things, I thought of butter and ate some, right from the wrapper, and it did seem to calm things down.

    Anyway, for hormonal / emotional concerns, it’s worth a look. worldcat.org can tell you the library nearest you.
    Good recipes, by the way.

    Liked by 2 people

    Comment by HoDo — January 28, 2020 @ 11:26 AM

  34. “Butter is rich in nutrients and beneficial compounds like butyrate and conjugated linoleic acid. High-fat dairy products like butter have been linked to a reduced risk of obesity, diabetes, and heart problems.” https://www.healthline.com/nutrition/is-butter-bad-for-you

    Butter “contains Arachidonic Acid (AA) which plays a role in brain function and is a vital component of cell membranes.” https://bodyecology.com/articles/benefits_of_real_butter-php/

    “Butter is a rich source of vitamins A, D, E, and K – all needed for the body and brain. Without these, we are unable to utilize the minerals we ingest.” https://wholelifestylenutrition.com/recipes/condiments-sauces/benefits-raw-cultured-butter/

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 28, 2020 @ 11:35 AM

  35. WOW!!!!!!! THANK YOU SO MUCH HODO AND PHYLIS!!!!!!! 😘🙏🏼🦅😇💗😘. Looks like I’m off to LOTS OF BUTTER!! 😊🙏🏼🦅😇😘😘😘😘😘

    Liked by 1 person

    Comment by Kathy S.B — January 28, 2020 @ 2:05 PM

  36. I was actually thinking of trying to get into see the dietician to help me figure out a proper meal plan for both me (as an epileptic) and my husband (as a diabetic) to see if I can come up with a medium that would work for the both of us I WOULD LOVE THAT!! Plus it would make life a little bit lass complex!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — January 28, 2020 @ 2:11 PM

    • KETOGENIC DIET

      The ketogenic diet, which involves eating a high-fat, low-carbohydrate diet to minimise the amount of sugar and starch in the body, can be particularly effective in patients with epilepsy and/or diabetes.

      Created in the 1920s to treat epilepsy, the diet is usually considered when at least two AEDs have not had success in a patient. The diet is believed to reduce the likelihood of seizures by altering the chemical composition of the brain.

      Some research has indicated that the ketogenic diet can benefit people with diabetes. While a ketogenic diet has been shown to be generally safe in long-term studies, there has yet to be any very-long-term studies into the diet.

      As a result, heath practitioners still voice doubts over the long-term safety of people remaining in prolonged periods of ketosis.

      The diet should only ever be adopted after careful consideration with your doctor or health care team.

      https://www.diabetes.co.uk/diabetes-complications/diabetes-and-epilepsy.html

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 28, 2020 @ 2:19 PM

      • Thank you Phylis 😊

        Like

        Comment by Kathy S.B — January 28, 2020 @ 3:56 PM

      • I got my letter tonight from the “Danny Did Foundation” 💕🙏🏼🦅😇💕🙏🏼😘. Honestly I AM SOOOOOOO EXCITED I DON’T EVEN WANT TO OPEN IT!!!!!!! I just keep staring at thinking of everything everyone one of us has gone through and are going through 🙏🏼🦅😇💕. At some point I will open it ASAP BUT FIRST I JUST HAVE TO THANK THE FOUNDATION AND ALL OF YOU FOR ALL OF YOU HELP!!!!!!! THANK YOU ALL SOOOOOO MUCH AND ESPECIALLY YOU PHYLIS FOR ALLOWING US TO CONNECT KNOWING WERE NOT ALONE!! THANK YOU 😘🙏🏼🦅😇💕

        Liked by 1 person

        Comment by Kathy S.B — January 28, 2020 @ 10:52 PM

      • YAY!!!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 29, 2020 @ 9:39 AM

      • Goodmorning Phylis 😃 YES!! I keep sitting here staring at it because I’m IN HONEST TO MY GRANDMA/CREATOR/GOD IN GRATEFUL SHOCK!!!!! Lol plus I don’t want to even want to open the envelope!! It’s SO UNBELIEVABLE HOW STRANGERS ARE WILLING TO HELP OTHERS THEY DON’T EVEN KNOW!!!!! 🙏🏼🦅😇💗. There are GOOD PEOPLE IN THIS WORLD WILLING TO HELP US!!!!!!! 🙏🏼🦅😇😘😘😘😘😘. Even my husband kept staring at me in shock!! Oddly through all of this past year and a half I would have to say lastnight was THE FIRST TIME I EVER CRIED!!!!!!! Maybe in relief knowing I can keep trying to help myself get better!!!!!!! Now it’s my/our job TO REMIND AND TEACH PEOPLE ABOUT SUDEP AND THE DANNY DID FOUNDATION!!!!!!! Because ITS A VERY REAL THING I KNOW!!!!!!! Thank you and I’ve never tried avocados but it looks like I WILL BE NOW!! 😃🙏🏼🦅😇😘. Thank you HoDo and Phylis PLEASE HAVE A VERY GOOD DAY TODAY AND PLEASE BE WELL AND TAKE CARE OF YOURSELVES!! 😊🙏🏼🦅😇😘💞

        Liked by 1 person

        Comment by Kathy S.B — January 29, 2020 @ 10:11 AM

  37. Re fat: if you live where you can get good avocados, an avocado a day is part of a good seizure-prevention diet. It helps with depression, too.

    Liked by 2 people

    Comment by HoDo — January 28, 2020 @ 2:35 PM

  38. I eat them every day! That must make me the happiest camper on the planet. 🙂

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 28, 2020 @ 2:56 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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