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My Story with Confused Doctors would love to hear what people have to say

Confused Doctors

Hi I wanted to see if this has happened to anyone else but when I was about 12 years old I was playing football and received 4 concussions over a 1.5 year period. A few days after the final concussion happened I was extremely confused in the morning and later that day had a grand mal seizure. I’m not exactly sure how/if those are correlated but over the course of visiting 4 of who were supposedly some of the best neurologists in the Boston area all refused to take into account the possibility the injuries had something to do with it. I had a positive EEG, diagnosed with epilepsy, and was put on depakote. Several years later at one of my regular check ups I asked my doctor if there was any way to see if we could start taking me off the medication because I hadn’t had a seizure since the first one but every doctor did not want to which is why I changed doctors so many times. I was having positive EEGs until the time I was about 16 and did not have any other tests done for another several years. I had missed doses of depakote every now and then so I was becoming kind of suspicious that it was actually doing anything, just making me extremely foggy and feel brain dead during the day. I decided for myself just to completely stop cold turkey and as I kind of expected, absolutely nothing happened and I felt great. I did not say anything for several months and than ended up getting an EEG when I was 19 to actually see what my brain activity was like. After cold turkey stopping the medication, being off it for probably 4-5 months, my EEG turned out completely normal and I did not have any irregular spikes in brain activity. I felt completely betrayed by my doctors because even after the EEG the current doctor called and said “well if you were my kid I would keep you on it forever just in case something changes again in the future” I just figured out this subreddit was here and have been wondering if anyone else has gone through something similar or has any opinions. :)

Comments

Hi ntnewhampshire,I am a long

Hi ntnewhampshire,I am a long time diagnosed epileptic and, just like you, I stopped taking AED drugs.   In fact, I did so 3+ decades ago after multi seizures during my teenage years.Whether it be a brain injury or more complex non-brain injury (such as epilepsy, whereby, I fall into this category), the medical study of neurology is so complex that, we patients who want to believe that a medical professional, by writing a prescription, will be able to answer our everyday medical need is not true.At epilepsy.com, they emphasize on using 'My Seizure Diary'.   This is what my mother utilized (long ago in her own ways) back 4+ decades ago when I was a toddler.  My mother has an innate/uncanny ability to remember minute details....  Over the decades, she has given me direction/guidance to where I have been able to find answers.   My mother also realized, back when I was a toddler, the prescribed drug given to me (still commonly prescribed today to all ages) had no pos/neg affect; thus, my mother tapered off my dosage and eventually stop buying the AED over a short period of time. I do believe I inherited/learned from my mother, how to recall minute details.  Epilepsy.com is a beacon/sounding board for those many who suffer from seizures...and they understand the need for epileptics to accept/embrace the benefits of their 'My Seizure Diary' program/effort.Because what triggers seizures is so complex, I'm not surprised by your written words.  All I can give you are these words from a disenchanted 55 year old epileptic:   You must be your own warrior.  The human body is so complex, thus, unfortunately, you must test/challenge yourself every day....and, if all goes well, you will be able to provide some comfort/guidance to those who share the same frustrations that you have had to endure so far in your life.Irma

Very interesting!  I've been

Very interesting!  I've been very uncomfortable from the side effects of my medications and always wanted to be on less or completely off.  Fortunately I have had a couple of doctors who were willing to give instructions how to taper off.  But it did not go so well for me.  Each time I felt super for a few days after that last pill and then I was in critical condition with status epilepticus (non-stop seizures).  I imagine this is what all your doctors have been fearful of.My seizures continue but the greater issue that you and Irma raise is the need for patients and doctors to be able to work as a team.  We have a chronic medical condition which means that we are forced into chronically relating with doctors.   I read many books to try to figure the character of doctors and to try to relate with them better.  My favorite is, The Silent World of Doctor and Patient by Jay Katz.  From the way the doctors push medications it is tempting to see doctors as primarily focused on getting their kickbacks from the drug companies.  There may be a lot of this but Katz describes other interesting issues.  It seems Katz's strongest point has to do with the "uncertainties in medicine."  Epilepsy and its treatment is loaded with uncertainties.  To cope with this atmosphere doctors are trained to present themselves as confident and certain they know what is best for the patient.  But we hear it all the time that science has much to figure out about epilepsy; doctors don't know it all.  Like Irma suggests, keep track of your seizures and treatment so that you can present yourself as organized, experienced, and knowledgeable about your condition.  I've found some doctors don't give credit to this, but I do believe there are many who are more willing to work with a patient who does keep record and show responsibility.   Mike

Hi, Thank you for posting and

Hi, Thank you for posting and we understand your frustrations. Treatment and how the body may react to certain taking or stopping medications varies for each individual.  We do not recommend that anyone stop taking their medications without the supervision of their doctors, this can lead to potentially dangerous consequences. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-an... However, we understand that most people with well-controlled seizures would like to stop taking their seizure medicines. In some cases, this can be done with the supervision of your doctor. A decision about whether to stop taking seizure medicines should be made after consultation with your healthcare team, who can help you evaluate your individual risks. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-an...  It can be challenging to find a healthcare team that you’re comfortable working with, so it’s important that you’re able to advocate for yourself. As Michael and Irma mentioned in their comments, organizing your medical history and documenting how you’re feeling and experiences in detail (like you’ve done in your post),will be very helpful to review with your doctors. My Seizure Diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness. If you can’t talk openly with your healthcare team about your health and daily life, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/se..., you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org.epilepsy.com/helpline   

There are some vague

There are some vague similarities here with myself, so I will contribute. I started having many minor seizures at the age of 12, but unlike in your case with no apparent cause and not grand mal. After 1 or 2 ineffective drugs, I was put on the same drug as yourself (different trade name, Eplim - but also just sodium valproate) and it stopped them completely, although the level was very high imho (1500 mg/day for a 12 yo) & it made me very foggy as well, I felt vacant and it sounded like the teacher was talking in another room sometimes. At the time, nobody ever asked me if I noticed any side effects. Anyhow the dose was reduced over 3 years to zero (1500, 1000, 500 mg years 1,2&3). After that I had no more seizures until mid 20's when I underwent a very stressful period. Again I was put on sodium valproate and that worked again, but this was only for about ~3 months, not 3 years as I went quickly on & off it as then I knew it was a possibility and the doctor was OK with it. I'm not sure how much this helps, as your seizure may have been from concussion, mine probably wasn't. But I think regardless of that it is good that you now have a medication that works and that you can go on & off of fairly quickly (hopefully) if you ever have future issues. By the way I think that it shouldn't be the patient that has to push to minimize the medication if control of seizures has been achieved, it should be the doctors, as many of the medications have a considerable toll on quality of life. Part of the problem is that often they are too busy, and another part of the problem is that they don't really understand as they haven't had to take the drugs themselves. Not really being rude here, just statements of facts as I see them. good luck

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