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Churk

Can someone tell me how to live with Undiagnosed seizures?

People have told me that it can take years to be diagnosed and I am positive I am having seizures. Because nobody can see them they write me off, doctors included. They think I am crazy or making it up, but I know I am not.

So how do I live? I try not to drive for fear of something bad happening, but my parents think I am lazy. They get mad if I ask them to drive me somewhere. They no longer take me horse back riding, so do I just give that up for years? I have tried ordering groceries online as I am afraid to drive to the store, but it is too expensive and I don't have a job, which is another issue. How do I hold down a job? What if I have a seizure at work? In May of 2010 I had to drop out of college due to a seizure. How do I go back? When I was there I would have almost daily seizure like episodes. Buses would be okay except that the closest stop is a 30min walk away, up an down two hills, walking right next to the road. When I do walk I am terrified that a car is going to hit me, not to mention that that is a long walk, especially with bags of groceries probably in the rain and cold.

The worst part is that my GP doesn't believe me and not many doctors around here take my insurance, so I am having a hard time getting a referral. Pretty much all I can do is sit home and wait for things to get worse because I am sure they will. Maybe that would be better because then people couldn't ignore me.

What would you do? What did you do?

Comments

Re: Can someone tell me how to live with Undiagnosed seizures?

The topic of very subtle seizures affecting one's whole life is addressed in two books: the Nerves In Collision book (about the many epilepsies) by Walter C. Alvarez, M.D., and the How To (understand) Hyperactivity book (1981) about ADHD Inattentive/central auditory processing disorder, and mild dyspraxia by C. Thomas Wild. Both books (Alvarez, Wild) may provide insights here and there (no cures).

Re: Can someone tell me how to live with Undiagnosed seizures?

Yes I have looked up those books, but do they tell me how to live? How to function? I can't find any copies that I can afford.

Re: Can someone tell me how to live with Undiagnosed seizures?

i self diagnosed myself 4 years ago. No one believed me until i had a grandmal 4 mo. ago and went for a ride in the ambulance. i know my triggers and luckily have a warning. i take keppra and cut my dose down to 500 mg 2x a day. dr had me on 1,000mg. i was crazy! slowly cut down then got cocky and quit all together...felt great for 4 days then had second granmal. now i take 500mg 2x it is what it is.

Re: Can someone tell me how to live with Undiagnosed seizures?

Before your grand mal did you drive around? If not, how did you get around?

Re: Can someone tell me how to live with Undiagnosed seizures?

Churk,

I read your previous post about subtle seizure signs as well.

I struggled with undiagnosed symptoms for a few years. One of my problems were myoclonic jerking. At one point, I myself suspected epilepsy, but never brought it up because it seemed weird and my symptoms did not complete fit.

I went on with life, and continued to keep a watch on my health. You need to as well.

Fearing and worrying, and cooping yourself at home is NOT going to help you. It won't help you in getting help from others (because people will think you are paranoid), it won't help you get a diagnosis (because doctors will roll their eyes at you) and it won't help you have a life. The more you stress about them happening, the more they will happen.

I know you want a diagnosis, and maybe even desparately want it. But here's a tip. The more you walk into a doctor's office and insist you have epilepsy, the more they won't listen to you. Because 1) there are a lot of people who think they have some condition and try and self-diagnose, and 2) doctors have egos.

Get on with your life, in every single way that you can. Get a job, or go back to school, whichever you like. So what if you have a seizure there? The more people who see it, the more someone can vouch as your eye witness.

I eventually got my diagnosis when I had a seizure in school and my classmate and instructor both saw it and could vouch for it. My doc who has known me as someone who's outgoing, headstrong, active, refuse-to-be-sick person etc said "it's epilepsy" and referred me straight to an epilepsy specialist. I doubt I would have gotten that diagnosis if I had always gone in and said at every visit that I have epilepsy.

In the meantime, as much as possible, avoid things you feel will provoke your seizures. But DON'T avoid life.

 

Re: Can someone tell me how to live with Undiagnosed seizures?

My biggest problem is driving. Many people have told me that I shouldn't be driving until my "seizures" are well controlled. Until that happens how do I do anything? The buses are too expensive and too far away, and my parents will only drive me to so many places. Thus far driving has been fine, but I have had myoclonic jerking while driving. The lights also bug me, so I am constantly rolling and blinking my eyes, forcing me to take my eyes off the road for seconds at a time. Sunglasses have helped but I cannot afford to buy prescription glasses right now. I have no friends, so nobody to help me get around. Is it okay for me to drive?

 

BTW, I have never said the word "epilepsy" to my doctor.  She doesn't even know a lot of this stuff because she constantly writes me off. Oh well.

Re: Can someone tell me how to live with Undiagnosed seizures?

 

Wait a minute. Are the only "seizures" that you have the myoclonic jerking?

I wasn't allowed to drive because I also have absences. When I had myoclonia (and happily unaware of the absences), I drove--and the doctor allowed me to drive. The doctor even said many people have myoclonia here and there (esp. if falling asleep), and there are a few types of myoclonia that are not epilepsy related.

For quite a few years, I thought mine were not epilepsy related in fact! I only began to suspect it might be epilepsy when someone who didn't know I had myoclonia said I had some "violent" jerks, and I didn't remember them happening. And I went to see my doctor who continued to talk to me for a while and then she asked me if I had jerked in her presence, to which I said no. And that's when she told me I had had 3 mini ones. So she 'tested' me out by nonchalantly chatting with me. They later confirmed my epilepsy with EEG and eye-witness reports and I responded to all the drugs which are commonly prescribed for JME (which at that time, I did NOT know I had JME, so it wasn't a placebo effect). And I have family history.

Change docs! Or if you can't, try a different approach with her. Instead of reporting 200 things, go in with a well-prepared list and say, "these are my (say) 3 main concerns. I need 3 minutes of your time while I read it out to you. I will appreciate it if you will give me that time". Or call her nurse ahead of time and give them your list so they can append to your chart and bring another copy with you. I made friends with my neuro's nurse and she's the person I call when I have seizures in the night and she will always append a note to the front of my chart.

As for the lights bothering you, get a cheap cap/hat with a brim to shade the light.

As for your parents, maybe trade favours with them. Drive me every day (be reasonable though, and try and do as much as you can when you've been driven to a place, and not asked to be driven every few hours) and in exchange, I will wash the toilet every week. Or something.

 

Re: Can someone tell me how to live with Undiagnosed seizures?

The last time I saw my doctor I told her about a scary episode I had a few weeks ago. I was at the store and I began to get really tired, confused, and dizzy, like being put under anesthesia. I told her that I was wandering around the aisles, having no idea what I was supposed to be doing even though I had a list. I told her I was slightly woozy and was looking for a chair because I was positive that I was going to pass out and/or have a seizure. Actually I didn't use the word "seizure" but I implied it. I told her of driving around sometimes and feeling confused and lost, afraid I was going to forget how to get to places where I have been dozens of times, or sometimes being on "auto pilot" like I am not fully "there" but somehow still getting home. I don't trust myself to drive, even to the store two minutes away. I am afraid I am going to space out and crash or get lost which (getting lost) has almost happened.

My doctor knows nothing else because, as lovely and nice as she is, she thinks I am crazy and making things up.

As for the myoclonic jerks I know when they all happen and though I might have had absence seizures (sudden blank mind, losing train of thought, unable to recall events right before) I do not believe they were associated with my myoclonic jerks.

Re: Can someone tell me how to live with Undiagnosed seizures?

Churk,

Your doctor isn't lovely. She thinks you are making things up. Why on earth would you and why on earth would she think so? Your doctor is nuts. Please find a new doctor.

You need to live your life. Keep a seizure diary if you can to help you learn your triggers and avoid them. You need to live your life. Hiding in your house out of fear will only make things worse. You can get "clip ons" for your glasses if you can't afford sun glasses. They are not expensive.

Please do as much as you can and don't let fear keep you from living your life.

Baruch Hashem. Hoshia na.

Devorah Zealot Soodak www.psychout.typepad.com/ the zealot needs help!

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Re: Can someone tell me how to live with Undiagnosed seizures?

I agree with you snowwoman! I couldn't get my liscence because I was having absence seizures with blackouts and migraines following the seizures. I went through a few doctors when I was a teen before my parents found one that believed me. Even then I wasn't classified epileptic. EEG rarely picked up any activity making diagnosis very difficult. I still think that doctor thought I was seeking attention and believe me that was the last thing I wanted in high school. Blacking out and falling down 3 flighs of stairs was not an act!
Fast forward 15yrs., I'm now on topamax and it works for me. It's been a long road to get there of trial and error finding what does and doesn't work (depakote was a nightmare!). I did have a couple of years in my twenties when I wasn't on meds but that didn't last long. I realized that the day I was driving on the interstate with my baby in the back and I drove over 20 miles on "auto pilot" and when I snapped out of it I did not even know how I had ended up driving the car in the first place!
Don't stop living, but demand better care from your doctors! Fight for your rights, but don't walk in to their office already diagnosing yourself, they hate when you do their job for them. Logging all of you symptoms in a notebook for at least a week is some times the best way to get a diagnosis. Take care and good luck

Re: Can someone tell me how to live with Undiagnosed seizures?

Hi Churk,

I didn't receive an official governmental recognized diagnosis of "epilepsy" until decades after my first seizures.

The element of surprise with epilepsy was more with the verification of "The Peter Principle" in everything involving the notion of "health" and "abilities", along with the arbitrary actions from the administrators of society seeded with the word "epilepsy".

"Amusing suprise" comes close to describing my response to noticing the multiphasic statistical attributes of Temporal Lobe Epilepsy (TLE), and the numbers also "wrecked" the "dream on" expected statistical results for the class at university in studies of the MMPI. It was a lesson in what is to be done with an "outlier" (treat the person as if they are not there in the sample).

Hindsight tells me that it's best to blame all of the phenomena associated with being intertwined with epilepsy as a person, well, just to blame it all on migraines, and take the minimal amounts possible (also so as to preclude the officially rejected notion of "kindling") of Anti-Epileptic Drugs (AEDs, for me, regular Keppra) to control the "slow-seizures" of migraines, without the intense prejudicial stigma of epilepsy (many drugs precisely for migraines tend to aggravate seizures): http://books.google.com/books?id=7dE7PxgnyvoC&printsec=frontcover&dq=Sac...

It's also best to avoid subjection to the practices of true-believers and faithful practitioners of the professional "Mental Health/Mental Disorder Sciences" like the plague.

Tadzio

Re: Can someone tell me how to live with Undiagnosed seizures?

Churk,

You should file a professional complaint against your doctor. Accusing you of "making up" your symptoms is unacceptable. You need to find another doctor ASAP. The doctor has no expertise in neurology, nor any reason to disbelieve you.

I was finally diagnosed at age 55 after a history of seizures, headaches, and serious neurological problems going back as far as I can remember. That diagnosis has since been removed by doctors with G-d only knows what motives. They did not have sufficient data to do so and are guilty of malpractice for other reasons.

I, too, do not drive because of all of the little and not so little bits of lost time. I gave up many of my dreams because I knew I had a problem that the doctors ignored. I had such bad neurological problems that I was tested for myaesthenia gravis when I was eight, which I fortunately do have. That was ruled out and no further testing was done. Too bad.

I had episodes of extreme confusion and disorientation in school, which were ignored. My myoclonic seizures were worse than ignored. My migraines and other headaches were discounted and ignored. I was imagining things or making them up.

Please take hold of your life and do not allow yourself to be treated this way, especially by your own family. They should listen to you and support you. They should help advocate for you with your doctors. Enough of the shoulds. Mine didn't either.

Just make sure you don't let anyone push you into psych. You are not crazy and don't let anyone say that you are. I can't take the meds, so I have had to learn to reduce my symptoms by taking the best care of myself possible. My current living conditions make that difficult, but I do the best that I can with what I have. That is the best advice I can give to you.

I don't understand why you had to drop out of school. I think you should go back. If you have seizures in public that people can understand, this will bolster your case. The social contact would be very good for you, not to mention the education and the degree you would receive.

Please don't stop living your life. I lived mine. I made sure I had jobs that didn't require steadyness (I worked as a consultant) and I made sure I lived in places where public transportation was available. You need to do the same. I know that it will be hard to pull yourself out of your slump, but you can't keep waiting for a diagnosis that may never come and might be taken away from you by the next doctor your see.

All of the best. I will keep you in my prayers.

Baruch Hashem. Hoshia na.

Devorah Zealot Soodak www.psychout.typepad.com/ the zealot needs help!

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