Medical Detective Goal
I have a medical symptom that has started to show up about once every year or two. It began 4 years ago as a seizure reaction to a medication I was taking. It took me 3 years, job loss and a bunch of research to discover that is why I was having them. My job just put me off the clock again in January for what they mistook as the same thing, though it wasn't. I still have to go through a long process that may be another 6 months to prove it wasn't and clear myself so I can go back to work again.
There is nothing that I know of or that a doctor has told me that actually reveals the "why" of my problem. Why do I have them? How can I fix this body so I don't have more? Sure, I can avoid the medicine but what if the real problem causes another seizure from something different? Every day is a trip through anxiety. Every little variation of feeling from my shoulders up creates the question, "is this a precursor to a seizure?" Should I be worried or not? What is a 'precursor' and how do I recognize it? Every time I close my eyes I half pray that in the morning i will open them again.
My goal is to find out what is wrong with me that is the root cause of the brain malfunction and correct it. I can't go on with the fear which has got me by the throat right now.
One common medical view is that at any moment I might drop over, pass from consciousness and have a big seizure. Then hopefully I will at least wake up a few hours later. I could be ok or remember nothing, and I may not even be capable of adult behavior any more. I could even pass away. I am determined to not let that view become reality. There is a lot more to know then "go home and take this pill". That is all I have been told so far and that is not all there is to know. I must learn or I am afraid of what will come of me.
What is/was the timescale of your seizures? Once or many times every so many days, weeks or months?
If the seizures began after starting with this particular medicine, do you have options to control your symptoms with another medication or method? If you've left the medicine for a time did you have any seizures afterwards?
My understanding (not a great one I'm afraid) is that only for some things there are precursors for seizures and that not all have the same. Therefore, my thought would be to go over things and make/keep records as detailed as you can - what you recall before something happening, if maybe certain foods or medicines were taken, if you were walking around or exercising, working hard, everything.
I don't know your medical history, but if you haven't had mri scans or similar then maybe that would show something, or blood tests after something happens.
I get the feeling that not all can be shown through tests, that maybe you need to work out the basics from which doctors can do the rest. You will know your daily life better than any doctor, so keeping records to show all, as annoying as it may be to do so, can only help in the long run.
Also, I would try to ensure that at least somebody in each place that you regularly go to knows [to an extent] that you might sometime have a seizure and know what to do or who to contact. Give yourself peace of mind where you can, try not to worry and keep it all on yourself.
I very much appreciate your input to my own thread, and hope you will update on your progress here. Totally unrelated, but with your avatar, do you ride? I love my bike and for my own stress I guess need to get it fixed and riding again...
I had 4 grand mal type seizures in about a 3 month period back in 2014 in my sleep at night. Those were directly connected with my use of an antihistamine sold as Benadryl or under the generic name, diphenhydramine HCl, which is sold without needing a prescription in the USA. I worked a second shift job at that time so I took the drug while at work and generally didn't see any response to it until 6-8 hours later when I had gone to bed to try to get the most out of what little night was left. I stopped working at that job and stopped using the antihistamine without ever making the connection about why I was having seizures. They stopped and I figured maybe they were just a freak occurrence because even with all the tests and specialist visits, they could not tell me why I had them.
Two years went by, I was working at my present job which is very very demanding in the winter months. I felt like maybe I was getting sick with the stress of the job and working 75 or more hours a week, so I took a drug cocktail like Nyquil that is for multi-symptom cold relief late in the night hoping it would help me at least a bit. It also contained the diphenhydramine that I had trouble with but did not realize yet. The next day I had what medical people assumed was a seizure though nobody was there to see or hear anything while I was at work. It was about 8 hours after I took the drug.
I was put off work for about 6 months after that event until I could prove that I am a safe person who would pose no threat to the community because of my supposed condition. It was during that time that I did research into why I might have them and discovered the link to the medication which is up at the top of the list of over the counter medications that cause seizure. I brought this connection up to my specialist who agreed with me that it seems like the most likely cause.
The most recent event from what I can tell from tests and my physical symptoms was not a seizure. I may have gotten dizzy or passed out from being sick and on medicine and under a lot of work stress. My employer is extra fearful and has no expertise in the situation, so they are treating me as though I have had another seizure and have put me back off the clock. Thankfully the state department of unemployment sees it as my being let go of my job for medical reasons and without fault on my part. I can get some compensation to help keep a roof over my head because of that. There is another workers' rights group I am working with who made me think they will try to use my medical case documents to clear me so I can go back to work in a couple months. I hope all this will go smoothly...
I have to go but I can write more later.
I can see how all this must be frustrating for you. Sounds like too many little circumstances of different medications and time periods, working hours that might throw out your body's balance, that make it difficult to pinpoint the precise causes, no?
The work situation doesn't sound good. I'd expect anywhere that being fearful is not a reason to keep you from work - unless it has a direct impact in being dangerous in the moment of having a seizure, such as driving or working machinery. I hope you can get them to sort it out. Makes me thankful that my boss has been compassionate with the errors and delays I've made over time, though I had to open up to her about my problems before it did come to the point of letting me go.
I wonder if there might be some specialist online you could send data to for an opinion or insight? At least that possibly being an option without cost, and also anonymous if desired.
I wish there was a specialist like you describe. If I find one I will let you know. One difficulty in the online help would be finding a way to boil down the parts of the issue until it is quick to read and fairly easy to find a simple reply for. So far I don't know of any doctors who do online work to that extent. Hopefully I will find someone. As I continue researching how to support my body and brain I hope to find relief from this possibility of having seizure. If I can give my body a good nutrition platform to work from it should create healing and resilience in weak places. I want better health. I don't want what ever problem is causing my symptoms to stay or change me for the worse.
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