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Would they notice if you stopped treatment?

Sun, 04/30/2006 - 20:11
If I were to simply stop going to my neurologist and stop my medications, how soon, if ever do you think it would take my neurologist to notice? and would he have to report me to the DMV? I just feel I've had more seizures since I've started treatment then I ever had before. Before I'd have maybe one or two a year. Now I'm having them almost weekly? and I'm on medication? What is up with that? and before i only got one type of seizure (well that I knew of), now I'm getting so many different ones and they're starting to get scary to me. This last one I felt like my heart was stopping and when I dropped witnesses said my lips had turned blue and my eyes were open and fixed, they thought I was dead. My neurologist is very well respected in this area, he seems like a nice person and a very knowledgable doctor, but his office is huge and I can never get ahold of him in between appointments, I wont even see him again until the begining of June. I feel like I'm better off without "treatment", I can handle one or two a year so much better. This is just nuts.

Comments

Re: Would they notice if you stopped treatment?

Submitted by gretchen1 on Mon, 2006-05-01 - 19:18
Hi Gina Marie - I can only share my experiences and opinions okay? My epilepsy has morphed or changed many times. I've read others have too. Plus there are many incidents in my family and I've seen their epilepsy symptoms change a lot too. I don't know, but I do wonder if that is part of epilepsy. It doesn't seem to hold still very long in many of us. My question then would be, are you possibly having a change in your epilepsy and what you need is not less treatment, but treatment better calibrated to your present status. On the other hand, having just ended yet another miserable AED trial that didn't work due to side effects, my husband said that I was so mindless I didn't notice but the last time they upped my dose I started sz'ing far more and this has happened to me before. My first neuro was such a doofus. He even hospitalized me for two weeks because my sz's soared on Lamictal and later said - it's impossible for soz's to increase due to an AED. Pardon me? Then I just had one heck of a hallucination, with extremely bad food! Stopping treatment to me when your sz's are increasing freezes me in my tracks. Really, that scares me, please talk to your doctor or heck CHANGE doctors if this guy is so unavailable, been thru that too. A neurologist needs to thoughtfully sit down with you and carefully go through your prior history and what's going on now - get the big picture. I've noticed the tendency in recent times for specialists to get these gigantic offices, with a large staff of doctors and support staff. Sometimes it works but sometimes it's too many peopleand patients are lost in the shuffle. I've become too of the opinion if I start with a new doctor and he chronically is overbooked, doesn't take call at night, his answering service always says go to the ER when you're calling for something you have enough concern to call about but don't feel it's emergent? To me that is not responsive treatment for a patient,although it sure does give more personal time to the doctor. Consider that general neuro's treat a wide variety of maladies from carpal tunnel to epilepsy. IOW some, depending upon what their patient load tends to be, not all neuro's are epilepsy oriented. My first Dr. Doofus's receptionist told me he was a specialist in epilepsy. Later I doubted that, asked her how many epileptics he saw and she said - one. Me. Would you be open to asking this large office, office manager who in that office deals most with epilepsy? I have found office manager's to be very helpful because they seem to be very powerful and knowledgable about all phases of their offices. Perhaps what you need to do is simply switch within the same office too. But you do not seem to me to be getting responsive care. At least if I were you I wouldn't feel I was. He may be highly respected but I think it is imperative to have good communication, trust and respect in all ways with our neuros and if you are lacking this, and I believe you are, I don't think you and he are a very good match. You shouldn't be left with such insecurities. As far as reporting to the DMV? I'm real confused about this. I personally think from my experiences only that there are a lot of threats about reporting us to the DMV that are empty threats. I've not only been verbally threatened, I got a written notice from one ER that said any loss of consciousness was automatically reported to the DMV. Someone else said that was standard in California. Horrors. That not only effects me, but it also could, probably would increase the car ins. premiums on the car my husband drove, and he doesn't have this. I voluntarily don't drive - much. I let my license expire but I wasn't about to report I have seizures due to car ins.premiums. That hospital? Never reported me, nor has any physician who has told me they were going to. My son's neuro however has, will. I should have included this above but when I first started sz'ing I had two kinds of recognized sz's. I think I now have 11. As it turned out I had very mild epilepsy prior to being diagnosed, many were variations of simple partials at the very least, plus I have gained sz types since I've been diagnosed,obviously. So when I say I have 11 recognized sz types, it's true I have experienced 11 types, but I am not, I never have, experienced all of these all the time. One specific sz type I'm thinking of that I was absolutely driven nutty by I had very frequently for about 2 years but I haven't had it again for about 3 years. I don't know if I'll experience it again or not but officially it's on my records that I have that sz type. Neither my epileptologist, another epileptologist I saw, nor any neuro I've seen seems to think my epilepsy changing so much is that unusual. Here's another example of this. My son quit sz'ing, went off AEDs for 6 years, then started sz'ing again. That wasn't considered unusual either. Again, I have also seen my family members gain and also we can loose different sz types. I urge you strongly not to worry if your doctor will notice. I'm concerned about you. What could happen if you stopped treatment? If your lips turned blue even once during a sz and you looked dead? Know this. You could have been on your way out. A sz that lasts over 5 minutes is going into the red zone. I have had to have full resuscitation twice, before we knew that fact. Epilepsy can not only be a darned nuisance, it can also be deadly. Please, think of a different course of proaction for you, but don't drop treatment until you do. I'm worried you will. Please, don't. Gretchen

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