Epilepsy Talk

Anti-Epilepsy Drugs Lose Effectiveness Over Time… | May 11, 2010


It may be the dose prescribed…the type of epilepsy you have…even something as simple as your age or weight.  But research shows that, over time, the effectiveness of your anti-epilepsy drug may decline.

Almost all first, second and third-generation epilepsy drugs lose their efficacy after prolonged treatment. Perhaps it’s because your metabolism builds up a tolerance to the drug.  And ramping up the dosage can work.  Or it may be a functional tolerance where your brain receptors have become resistant to the drug. In that case, a change in medications may help.  But whatever the cause, you’re not alone…

Patients showing tolerance to traditional drugs

“A new critical review by Dr. Wolfgang Loscher and Dr. Dieter Schmidt shows that repeated administration of antiepileptic drug (AED) therapy has diminishing results in preventing seizures in epileptic patients. In clinical trials, the number of patients remaining seizure-free declines over time with prolonged treatment. This review explores how acquired tolerance, the adaptive response of the body to foreign substances, as opposed to innate tolerance (which occurs in patients naturally resistant to certain medications) is responsible for this diminishing effect.

The risk of developing a tolerance to AEDs was traditionally thought to be small. Loscher and Schmidt, however, conclude that while AED tolerance is not a serious issue for most sufferers of epilepsy, it is a significant aspect of treatment in some patients. A few may even develop a cross-tolerance to similar medication. This “multi-drug resistance” is of serious concern to patients with medically intractable epilepsy.

The findings directly conflict with the treatment method many doctors are currently using…

It is standard practice to increase AED dosage until adequate seizure control is obtained. However, this protocol presents a number of issues. The threat of medication tolerance is generally overlooked, as is the idea that epilepsy can be a progressive disease and does not develop at a fixed rate. Further, patients may acquire a tolerance to some effects of a particular drug, but not all.

Loscher and Schmidt have spent decades studying the effects of AEDs, however, Loscher believes that AED tolerance is a topic that has yet to be fully explored, and that more long-term clinical trials are becoming increasingly necessary. ‘Despite the convincing experimental evidence,’ Loscher says, ‘tolerance to the effectiveness of AEDs seems to have been forgotten.’

Research is currently being done on the effects of placebo and conditional tolerance (a mental, conditioned-response effect that the mind has over the body). Doctors are also studying the effects of lower initial and target doses of AEDs. The possibility exists that many patients are being initially over medicated poses a significant challenge to doctors and scientists working toward effective seizure control.”

This study was published in Epilepsia magazine.  Epilepsia is published on behalf of The International League Against Epilepsy (http://www.ilae-epilepsy.org/) the world’s preeminent association of physicians and other health professionals working towards a world where no person’s life is limited by Epilepsy. Its mission is to provide the highest quality of care and well-being for those afflicted with the condition and other related seizure disorders.

Resources:

http://www.sciencedaily.com/releases/2006/09/060911111533.htm

http://www.raysahelian.com/epilepsy.html


33 Comments »

  1. Valporic Acid was more first drug that appeared to work but after a year. It became sugar water for my system. This note indicates a lot of patients have other drugs.

    I noted this w/ a test drug it took one month. The Epileptologist who I see questioned this to me. Reading your article and other articles you attached it too. Made me feel a lot better.

    It happened to me after over 30 years w/ Tegretol. This medication really helped but I had easy bleeding. I have taken almost all the medications.

    My seizures started when I was 13. I did not take medication until I was 18. Emergency medication gave me medications when I was unconscious when I was young, and my seizures stopped until I was conscious.

    Now I have other medical problems. I feel wacky at times that my medcine is not working.

    Comment by Tonialpha — May 12, 2010 @ 1:16 AM

  2. Emergency probably gave you a strong IV to stop the seizures. That’s what happened to me. I think it was phenobarbitol. But, because of years and years on Dilantin, it didn’t work! ;-)

    Comment by Phylis Feiner Johnson — May 12, 2010 @ 2:21 AM

  3. A lot of the problem is that they make new medicines that are the same family. Actually, they work the same. If one is not working for you, neither will the others in the same class.

    Comment by Ruth Brown — May 12, 2010 @ 7:40 PM

    • YOu are absolutey right, I feel!

      Comment by Tonialpha — May 13, 2010 @ 1:52 AM

  4. Is there some way you can alter your meds to change that?

    Comment by Phylis Feiner Johnson — May 12, 2010 @ 8:05 PM

  5. My doctors have. I am in one class of meds that work for me and 2 others that are in different groups.

    The one group I am in is: Lorazepam and clonazepam.

    Comment by Ruth Brown — May 13, 2010 @ 5:53 AM

  6. My Epileptologist just wrote that I am a hard case and diffucult to handle because of other things that I deal w/. My other case is asthma.
    It is allergy and asthma. I have take Klonopin and that is a great medication and I sleep. I think that patients that deal w/ grand mals have it bad. I get flurries and I hate someone helping me.

    Comment by Tonialpha — May 13, 2010 @ 10:34 AM

  7. Tonialpha, I know you hate to feel helpless but people actually LIKE to help others. It’s one of the best lessons I learned in therapy. It makes them feel noble and kind. Please, don’t be afraid to reach out.

    Plus, I agree with you…Klonopin is great. I take .05 MG in the AM, then 1.0 MG in the PM.

    Comment by Phylis Feiner Johnson — May 13, 2010 @ 6:53 PM

  8. The Epilepsy Society in Towson, MD. Asked if I would speak, in a health fair. My ashtma kicked in I could not speak because of the asthma. The lady if I would be an outreach person communicate w/ another person and I felt honored to do that!

    Comment by Tonialpha — May 13, 2010 @ 10:46 PM

  9. Congratulations, Tonialpha! What will you be doing and will this be a permanent gig?

    I envy you…I’m just having such a difficult time getting traction with the local business groups and schools. But once you do it, you’ll be hooked… The kids are great. A little bit clueless, but terrific just the same. ;-)

    Comment by Phylis Feiner Johnson — May 14, 2010 @ 3:09 AM

    • Thank you for the compliment. They gave me fliers a poster and a game to play!

      Comment by Tonialpha — May 14, 2010 @ 3:21 AM

  10. That’s very cool. If you want, you can use my article “Epilepsy Myths Live On” http://epilepsytalk.com/2009/09/08/epilepsy-myths-live-on%e2%80%a6/

    or “The Epilepsy Hall of Fame” http://epilepsytalk.com/2009/09/08/epilepsy-myths-live-on%e2%80%a6/

    Those were both hits at the high school health fair I participated in.

    When is the health fair? Have a great time and tell us all about it!

    Comment by Phylis Feiner Johnson — May 14, 2010 @ 7:38 AM

  11. Great Tonialphia!! That is an honor to help people understand epilepsy.

    Have you tried taking something for your asthma before you give a talk. Advair works great, I take that for my asthma. Ask your doctor for it.

    The 7 myths that Phylis mentioned are:
    1. Epilepsy is contagious
    2. People with epilepsy cannot be employed.
    3. People with epilepsy are physically limited in what they can do.
    4. Only kids get epilepsy
    5. Epilepsy is rare and there aren’t many people who have it.
    6. Epilepsy is no longer a problem since there are medications to treat it.
    7. You can’t die from epilepsy.

    Here are the facts in my life about these myths:

    To number 1. In my case it is genetic and hereditary.
    To number 2. I have not been employed because I have more than the usual amount of seizures. I tried working and kept having seizures on the job. I had to quit, I was not fired.
    To Number 3. When I have severe seizures, I am limited in what I can do for a long time.
    To Number 4. I got epilepsy when I was 6 years old. A lot of adults do get epilepsy, as well.
    To Number 5. In mhy family, it is quite common.
    To Number 6. My mwsds will quit working for no reason and then I am back on the medicine merry-go-round.
    To Number 7. I have almost died twice from STATUS EPILEPTICUS.

    You are both welcome to use my real life comments in your teaching others to learn if you want to. Just do not use my real name.

    Comment by Ruth Brown — May 14, 2010 @ 10:52 PM

  12. Has anyone knowledge of the H1N1 vaccination having an effect upon dilantin levels? I have taken dilantin for 47 years (I am currently 66)and suddenly in early January my dilantin became toxic to my system. I have altered my doseage many times since and just when I thought I was feeling almost normal again my level spiked and once again I had to lower the doseage but now I feel very unstable. There is no neurologist in my town and I deal only with my GP. Having my blood level checked weekly.

    Comment by Diane — June 16, 2010 @ 10:09 PM

  13. For those taking Dilantin, the vaccine may affect your blood level. http://www.acadianacenter.com/Images/Interior/h1n1%20consent.pdf

    However, according to The Centers for Disease Control, children aged 5 or younger are at the highest risk. http://www.epilepsyfoundation.org/local/massri/news.cfm

    I hope you’re not regulating your Dilantin levels yourself. In any case, it would be helpful to see a neurologist.

    To find a Comprehensive List of GOOD Neurologists…Epileptologists…and Neurosurgeons as recommended by eforum members of the EFA, based upon positive personal experiences, go to http://epilepsytalk.com/2009/10/13/comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors/

    Perhaps you can find one in your area.

    I hope this helps! Good luck and let us know how you are doing…

    Comment by Phylis Feiner Johnson — June 16, 2010 @ 11:28 PM

  14. Hello Phyllis and all others. I thought I would let you know that I did finally see a Neurologist in Toronto Canada and he suspected I had experience a mild case of Guilliane Barre Syndrom. All that has happened since is I have continued with my reduced meds and testing my blood level periodically. I am not feeling well but dealing with it the best I can. I am tired of not feeling well and strong. I have started vitamins but it nasn’t really helped.

    Comment by Diane — March 6, 2011 @ 7:46 PM

  15. I had a friend whose mom had Guilliane-Barre in the 70’s. She did not have it in the light way. I met her in the 80’s and she is a great person and recovered. She went thru physical therapy. She was tired too. She had things to do but did a little at a time and she recovered!

    I wish you the best!

    Comment by Toni Robison — March 6, 2011 @ 8:38 PM

  16. You probably already know this, but according to the New York Times: “Guillain-Barre syndrome is an autoimmune disorder (the body’s immune system attacks itself). Exactly what triggers Guillain-Barre syndrome is unknown. The syndrome may occur at any age, but is most common in people of both sexes between ages 30 and 50.

    It often follows a minor infection, usually a lung infection or gastrointestinal infection. Usually, signs of the original infection have disappeared before the symptoms of Guillain-Barre begin.

    Guillain-Barre syndrome causes inflammation that damages parts of nerves. This nerve damage causes tingling and muscle weakness.

    The inflammation usually affects the nerve’s covering (myelin sheath). Such damage is called demyelination. Demyelination slows nerve signaling. Damage to other parts of the nerve can cause the nerve to stop working.”

    In some severe cases, GBS is treated with immunotherapy, which includes plasma exchange or intravenous immune globulin (IVIG). But you seem to have dodged that bullet.

    According to WebMD, breathing problems, muscle strength and fatigue are all symptoms.

    Physical therapy and regular exercise are needed throughout the recovery period to strengthen the weakened muscles. The therapy program can be made to fit your specific needs.

    Please Diane, take good care of yourself, try to keep your muscles somewhat active through exercise (although I suspect it must hurt) and keep us posted on how you’re feeling and what your progress is.

    Comment by Phylis Feiner Johnson — March 6, 2011 @ 8:48 PM

  17. I agree w/ Phylis if you are definitely diagnosed w/ G-B keep your muscles moving. Take it easy!
    Definitely keep us all posted! I totally agree!

    Comment by Toni Robison — March 6, 2011 @ 10:21 PM

  18. I thank you all most sincerely for your encouragement. I did not realize how alone and helpless I felt until I read your encouragement. I will push on….tomorrow I will start a regular schedule of exercises. I know I can count on my husband to help me. He had tried but I get so tired and I get frustrated because I am so weak. Thank you for giving me courage through your compassion. I will report back. I will do something. I am going to aim to learn to ride my bicycle when summer comes. I will listen though to my body when I am trying to push too hard. Hugs to all. Diane

    Comment by Diane — March 7, 2011 @ 4:23 AM

  19. I AGREE WITH ALL OF YOU.MY NAME IS KEITH.I HAVE EPILEPSY. AS A MATTER OF FACT,I HAVE TWO TYPES:GRAND-MAL AND PETIT-MAL.I HAVE BEEN VICTIM TO IT FOR 38+YRS AND I AM ONLY 40YRS OLD.I AM STATUS EPILEPTICUS MEANING I HAVE BACK TO BACK SEIZURE ATTACKS SO JUST AFTER A GRAND-MAL HITS LEAVING ME TOTALLYHELPLESS AS WELL AS UNCONSCIOUS. AFTERWARDS WITHIN 20 TO 30 MINS ,ANOTHER ONE HITS AGAIN.I HAVE BEEN ON PHENOBARBITAL MY ENTIRE LIFE ALONG WITH DILANTIN AND KEPPRA.JUST WHEN YOU THINK YOUR SEIZURE ARE DANGEROUS,YOU STILL HAVE TO WORRY ABOUT TOXICITY OF YOUR BLOOD,SIDE EFFECTS,AND ADVERSE EFFECTS FROM WITHDRAWAL OF THE DRUG WHICH ENDANGERS US BECAUSE YOUR BODY HAS BECOME ADDICTIVE OR THE TOLERANCE YOUR BODY HAS FOR IT WON’T LET COME OFF.WHOEVER SAYS THAT EPILEPSY DOESN’T KILL IS A LIE. 50,000 PEOPLE DIE EACH YEAR.ALSO, THERE IS SUDEP(SUDDEN UNEXPLAINED DEATH IN EPILEPSY).SEIZURES,STROKES,DIABETES,AND EVEN HIGH BLOOD PRESSURE SHARE THE SAME RELATED SYMPTOMS.NO MATTER HOW YOUR DOCTOR TRIES TO REDUCE THE FREQUENCY,EPILEPSY DEALS WITH NEURONAL ACTIVITY OF YOUR BRAIN ALONG WITH ALL THE OTHER HYPERSENSITIVE CHEMICALS THAT CAN TRIGGER THEM SUCH SALT,SUGAR,VITAMIN DEFICIENCY(EX:B-6),AND HORMONAL CHANGES BECAUSE THE BODY DOES HAVE HORMONES FOR EVERY AREA TO SERVE PURPOSE AND THE LIST GOES ON. GRAB A MERCK MANUAL SOMETIME OR GO ONLINE AND YOU WILL DISCOVER THAT ANYTHING THAT IRRITATES THE BRAIN CAN CAUSE A SEIZURE. FLICKERING LIGHTS MAKE SUDDEN NERVE REACTIONS. IT DOESN’T MATTER WHAT YOUR IQ IS OR WHAT AGE YOU ARE. LOOK AT DANNY STANTON AND JETT TRAVOLTA. BOTH WERE 4YRS OLD. EPILEPSY CLAIMED THEIR LIVES. ALL IT TAKES IS ONE SEIZURE TO KILL ANY OF US.I’M TIRED OF ALL THE STIGMATIZING AND STEREOTYPING ABOUT WHAT WE AND SO MANY OTHERS FACE SIMPLY DUE TO IGNORANCE. IT’S BAD ENOUGH WHEN YOU DON’T KNOW ANYTHING OR MUCH ABOUT IT.THE DAMAGE IS EVEN GREATER WHEN WE CHOOSE TO IGNORE IT LIKE IT’S NOT THERE,FOR THE NEXT LIFE IT CLAIMS MAY BE THEIR OWN. I HOPE THIS HAS SHED SOME LIGHT.

    Comment by KEITH WILSON — August 6, 2012 @ 2:40 AM

  20. Wow Keith, what insights! But you seem to be on a lot of heavy drugs. Do they help? Is your epilepsy controlled?

    Have you considered a VNS?

    Vagus Nerve Stimulation…Is it for YOU?

    http://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/

    Or Trigeminal Nerve Stimulation? The difference between this experimental device and the VNS is that the skin is never penetrated and the TNS is powered by an external device about the size of a large cell phone.

    http://epilepsytalk.com/2011/07/28/move-over-vns-theres-a-new-guy-in-town/

    http://www.npr.org/2011/07/27/138619259/new-device-reduces-seizures-no-surgery-required?ft=1&f=100

    I hope these help!

    Comment by Phylis Feiner Johnson — August 6, 2012 @ 10:21 AM

  21. WELL THANK YOU PHYLLIS.BUT TO ANSWER YOUR 1ST QUESTION. I DON’T TAKE ALL OF THESE AS IF THOUGH I WERE ON FIVE MEDS. OH, HEAVENS NO. I GOT TIRED OF BEING TREATED LIKE A LAB TEST RAT EXPERIMENT BECAUSE AT 15YRS OLD I MADE IT MY OWN PERSONAL CHOICE TO SEE WHAT MY MEDS HAD IN THEM. DEPAKOTE AND NEURONTIN IS WHAT PREVIOUSLY WAS TAKEN TO HELP CONTROL MY PETIT MAL SEIZURES. BUT THERE WAS ONE KEY PIECE THAT SO MANY DOCTORS OVERLOOKED. BESIDES TAKING PHENOBARBITAL AS WELL AS DILANTIN. DILANTIN AND DEPAKOTE ARE SODIUM-BASED. WHAT DOES THIS MEAN? SIMPLE. WHEN YOU ARE ACTIVE OR SWEATING A LOT,YOUR BODY RELEASES SODIUM EVEN BEFORE IT IS RELEASED THROUGH URINATION. SODIUM IS THE MAIN INGREDIENT, RIGHT? WHILE PHENOBARBITAL AND DILANTIN PROMOTE THE[LOSS] OF [SODIUM],AS YOU BEGIN AND CONTINUE TO SWEAT YOU LOSE GREATER AMTS OF SODIUM CAUSING BOTH DEPAKOTE AND DILANTIN TO LOSE ITS EFFECTIVENESS. THUS, IT OPENS THE DOOR FOR MORE SEIZURES BECAUSE OF SUCH SIMPLE CHEMICAL CHANGE ESPSECIALLY AFTER LOTS OF WATER(DILUTION) AND URINATION WHICH CAN TRIGGER AN ACID-BASE IMBALANCE AS WELL AS SUGAR.I WAS PUT ON KEPPRA WHICHIS MORE OF A NEW DRUG BUT EFFECTIVE. IT REPLACES MY NEURONTIN AND DEPAKOTE BUT EVEN BETTER IT WORKS INSIDE THE CELL WHILE THE PHENO AND DILANTIN WORK OUTSIDE THE CELL. THEREFORE,BOTH DRUGS CAN’T INTERFERE WITH THE KEPPRA. IT IS IMPORTANT TO UNDERSTAND THE ACTIONS,INTERACTIONS,AND THE REACTIONS THAT DRUGS HAVE WITH EACH OTHER. I AM FAMILIAR WITH VNS AS WELL AS TNS. WHEN DOC FAILS TO SEE THAT THE BODY IS CONTROLED BY BALANCE. EITHER YOU ARE GOING TO HAVE OVERACTIVITY DUE TO EXCESS OR UNDERACTIVITY DUE TO DEFFICIENCY. WHEN EITHER OF THESE TAKE PLACE,DISORDER ALONG WITH DYSFUNCTION WILL FOLLOW BECAUSE EXCESS GIVES THE BODY ESPECIALLY THE BRAIN MORE THAN IT CAN HANDLE CREATING MORE OF A DISTRESS SIGNAL CAUSING TRAUMA OR IMMEDIATE EXCITABILITY. WHEN THE BRAIN ALONG WITH THE BODY HAS LESS, THE BRAIN RELAYS BUT THE BODY DELAYS CREATING MORE OF THE SAME, BUT THE DISORDER BECOMES GREATER BECAUSE THE BODY HAS LESS TO FUEL AND FUNCTION CREATING DYSFUNCTION WHILE THE BRAIN CHEMICALLY AND HORMONALLY LOSE ORDER CREATING DISORDER. I DON’T NEED THE VNS OR TNS. IT VARIES WITH THE TYPE OF SEIZURE ALONG WITH SEVERITY AND LONGEVITY DEPENDING UPON THE AREA OF THE BRAIN THAT IS AFFECTED.BUT CONSIDER THIS :LOOK AT WHAT AGE DID YOURS BEGIN AT? WHAT WAS YOUR NUTRITION LIKE? WHAT FOODS OR LIQUIDS DO YOU TAKE IN OR OUT/HAVE MOST OR LEAST? NEXT TIME YOU GO TO YOUR DOCTOR AND THIS IS TO ALL WHO READ THIS,ASK YOUR DR.TO CHECK YOUR VITAMIN AND MINERAL LEVELS,CBC(RED AND WHITE BLOOD CELL COUNT),TS3 AND TS4 LEVELS ALONG WITH BLOOD SUGAR,FOR THESE WILL RULE OUT WHAT HORMONES ARE PRESENT OR ABSENT.EVEN IF ALL RULES OUT AS BEING GOOD,AT LEAST YOU KNOW WHERE YOU STAND.LOOK INTO AND UNDERSTAND FOOD/DRUG REACTIONS.YOU’LL BE SURPRISED TO KNOW THAT VITAMINB-6 SUPPLEMENT TAKES AWAY OVER 50% OF DILANTIN’S STRENGTH YET LESS B-6 CAUSES SEIZURE AS WELL AS LACK OF IRON CAUSES LESS OXYGEN WHICH IS IN THE HEME OF YOUR BLOOD WHICH CREATES SICK CELLS(SICKLE CELL ANEMIA)CREATING LESS OXYGEN FOR THE BRAIN TO RECEIVE CAUSING SEIZURES AND/OR STROKE.EITHER ONE WILL TRIGGER THE OTHER. I BET YOU ARE PROBABLY SAYING TO YOURSELF,WHY AM I NOT SOME ONE’S DOCTOR OR NEUROLOGIST? SORRY FOR ALL THIS FEEDBACK. BUT IT IS THROUGH MY EXPERIENCES WITH EPILEPSY ALONG WITH CAREFUL RESEARCH BY THE GRACE OF GOD THAT I UNDERSTAND SUCH AS I SET OUT TO RAISE AWARENESS ABOUT EPILEPSY TO SHARE THIS WITH MANY PEOPLE TO HELP THOSE WHO SHARE THIS WITH ME AS YOURSELF A MEANS TO BE ABLE TO COPE WHILE NOT LOSING HOPE.IGNORING SUCH BY NOT ACCEPTING IS ONLY INVITING WHAT YOU WERE NOT EXPECTING.LOVE YOU MUCH. I WILL STAY IN TOUCH. GOD BLESS US ALL. TAKE CARE.

    Comment by KEITH WILSON — August 7, 2012 @ 5:08 AM

  22. Smart guy, Keith. I can SEE you’ve done your homework. Thanks for sharing all your hard-earned knowledge with us.

    You might be interested in this article, although it’s probably not news to you!

    Epilepsy and electrolytes

    http://epilepsytalk.com/2011/10/16/epilepsy-and-electrolytes/

    Comment by Phylis Feiner Johnson — August 7, 2012 @ 9:05 AM

  23. We appreciate you for writing articles such as these to help
    keep understanding. Please be sure to read my blog site and
    follow it, too!

    Comment by Luis — May 14, 2013 @ 12:27 AM

  24. Thank you for the compliment. Could you please give us the link to your website?

    If you’d like to subscribe to Epilepsy Talk, and receive notifications of new posts by email, simply click on “Sign Me Up!”

    It’s on the bottom of the right column.

    Comment by Phylis Feiner Johnson — May 14, 2013 @ 11:24 AM

  25. My intolerance to my drugs isn’t that they lose effectiveness it’s that they make me quite unwell. In 2011, after being on Sodium Valproate for 2 years I began to have many problems. Things I could do easily before were now difficult to do. I went into cognitive decline, wasn’t able to word find, tremors and couldn’t walk. After me coming off the drug all went back to normal. I was then put onto Topiramate, which worked fine until last weekend when I became anxious and aggressive. My blood pressure increased and I began to hallucinate. Luckily, I was in hospital and the consultant reduced my dose of aed after seeing that they were side effects of the medication. I just wondered if anyone else ever had this themselves.

    Comment by Rebecca Ingkes — October 11, 2013 @ 3:55 PM

    • I am wondering if anyone has had an MRI and the report was that your brain had atrophied as well as there were holes…I just got this report and I am wondering if it has to do with our meds? Then again I had polio at age 5 so maybe that is it. Any ideas?

      Comment by Diane Heggart — October 11, 2013 @ 9:12 PM

      • Diane, I would get to a neurosurgeon ASAP!

        Comment by Phylis Feiner Johnson — October 12, 2013 @ 8:37 AM

      • thanks for replying Phyllis. I am awaiting an appointment with a neurologist in Sudbury as the first step. They do not see or hear about Polio any more so unaware of the latter symptoms as in Post Polio Syndrome. I have been experiencing imbalance and weak spells lately and more frequently so that was why I had the MRI to determine if there was a mass causing them.

        Comment by Diane Heggart — October 12, 2013 @ 2:07 PM

    • Rebecca,

      Have you had blood work done?

      It can measure the levels of the drug and determine what’s going on.

      If there’s not enough of the med in your system, the dose needs to be adjusted, raised or the med changed.

      Conversely, if the level is too high, it can turn toxic.

      (When I was a kid, I had toxic levels of Dilantin in my system and went into a coma.)

      I hope this helps…

      Comment by Phylis Feiner Johnson — October 12, 2013 @ 8:36 AM

  26. Diane,

    What kinds of tests have you had? Because there’s a whole world out there of diagnostic testing…

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

    I don’t know anything about polio (do they)? So I don’t know the consequences of the Post Polio Syndrome.

    But it sure sounds like your plate is full. My heart goes out to you. Let me know what happens.

    Comment by Phylis Feiner Johnson — October 12, 2013 @ 4:51 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've 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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