Defying Your Doctor
- Thread starter Endless
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Oh, I'm sooooo up for a cruise. I've been out on our company's jobsite most of this week to help DH (remember, arm in the sling guy I'm married to). And it's over 90° and we're doing hard heavy work, and I'm not in good shape.....it sure would be nice to just sit and watch the horizon. And no pills, maybe my memory would recover a bit.
Endless
Even Keel
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Not to pour rain on the parade or anything, but I never did go sailing, hiking, etc. All those rebellous things. I stayed on the meds and my seizures are pretty much under control now, but I still have really bad headaches pretty much daily. Most of the time I'm in a dark room with ice on my head.
In my fantasy vacation-land, no meds, no doctors, no seizures or headaches. Just all of us, frolicking in the sand and surf. Alcohol allowed. Tiny little umbrella drink, anybody? Got a favorite?
In my fantasy vacation-land, no meds, no doctors, no seizures or headaches. Just all of us, frolicking in the sand and surf. Alcohol allowed. Tiny little umbrella drink, anybody? Got a favorite?
I decided very quickly to stop my medication and seeing the neurologist after one visit.
To put it in perspective though, I have quite rare simple partial seizures (deja vu, for the past 22 years), that twice have resulted in losing consciousness (11 years between episodes). The only trigger I know is prolonged sleep deprivation (think weeks and months, not just a couple of days).
A neurologist diagnosed me with epilepsy and immediately put me on to Tegretol without explaining why it was being prescribed, what possible side effects there could be, without doing any blood testing to establish baseline data.... you get the picture.
I reacted quite badly to the Tegretol (mouth ulcers, body felt like it was hit by a train, and psychologically I had to keep telling myself "It is just the drug, it is just the drug". I lasted about a week and a half on the full dose, called the practice and explained what was happening. I was told via the secretary to come off the Tegretol and they would see me in a week and a half to try something new. I won't be going back - to me they sent the swat squad in when a negotiator would have been sufficient.
I am now trialling my first solution, which is to make sleep a priority. I'm keeping off the road as a matter of course so it can't hurt anybody.
Bear in mind though, my epilepsy (if that is what it is) is very mild and to date has not caused me any problems, and I was on Tegretol for a total of about three weeks. From reading through these forums recently I understand that my experience has been a walk in the park compared to other CWE members.
To put it in perspective though, I have quite rare simple partial seizures (deja vu, for the past 22 years), that twice have resulted in losing consciousness (11 years between episodes). The only trigger I know is prolonged sleep deprivation (think weeks and months, not just a couple of days).
A neurologist diagnosed me with epilepsy and immediately put me on to Tegretol without explaining why it was being prescribed, what possible side effects there could be, without doing any blood testing to establish baseline data.... you get the picture.
I reacted quite badly to the Tegretol (mouth ulcers, body felt like it was hit by a train, and psychologically I had to keep telling myself "It is just the drug, it is just the drug". I lasted about a week and a half on the full dose, called the practice and explained what was happening. I was told via the secretary to come off the Tegretol and they would see me in a week and a half to try something new. I won't be going back - to me they sent the swat squad in when a negotiator would have been sufficient.
I am now trialling my first solution, which is to make sleep a priority. I'm keeping off the road as a matter of course so it can't hurt anybody.
Bear in mind though, my epilepsy (if that is what it is) is very mild and to date has not caused me any problems, and I was on Tegretol for a total of about three weeks. From reading through these forums recently I understand that my experience has been a walk in the park compared to other CWE members.
Endless, please be careful FOR YOURSELF.
I do understand how you feel about how the medic. makes one feel like.
Reading your post, you are still having seizures, this is the reason I'm worried for you.
It epileptologist that put me on Keppra, and I know this works for alot of people, but it was my worse nightmare. When my husband (I couldn't function) call her office to tell her ALL the side effects. Her reply WAS ALWAYS Well you haven't had a seizure. which was true, but the life I had was ..BAD WORD..
I left her practice and found another neur.
I have learned alot on the forum and one of those is you, so please hang in there.
I will be asking a prayer for you tonight.
I do understand how you feel about how the medic. makes one feel like.
Reading your post, you are still having seizures, this is the reason I'm worried for you.
It epileptologist that put me on Keppra, and I know this works for alot of people, but it was my worse nightmare. When my husband (I couldn't function) call her office to tell her ALL the side effects. Her reply WAS ALWAYS Well you haven't had a seizure. which was true, but the life I had was ..BAD WORD..
I left her practice and found another neur.
I have learned alot on the forum and one of those is you, so please hang in there.
I will be asking a prayer for you tonight.
Last time I told my doctor my current cocktail (not the good kind) was not working, she prescribed felbatol, without telling me about the side effects! Fortunately, I have self-preservation, and access to the internet, so I did not switch. I don't know if that was to punish me for complaining or what. My practice is to tell the doctor what I need, have them give me the prescription, do my own research on it, and weigh the risk/benefits myself before applying it. If I don't like the what I find, I just tell them I changed my mind. I am polite, but I am extremely noncompliant, unless they do (I have a 2 person team) what I want. Usually we are on the same page, so this isn't a problem. However, I am starting to feel like the detrimental effect of what I am taking compared to the benefit is not starting to be worth it. Unfortunately, I have been through pretty much everything they have to offer. I only see them once every 9 months, about. Also, I did not stop doing a lot of dangerous stuff, myself. But I do not have the option of going off of my meds.
I don't know how many doctors you have been through, or how many may be available to you, but finding a new doctor, even though its a pain, might be the best thing. Best of luck.
I don't know how many doctors you have been through, or how many may be available to you, but finding a new doctor, even though its a pain, might be the best thing. Best of luck.
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Interesting discussion. My neuro tells me that she has no other patient on such a small dose of lamictal, 150 mg. And if I want to try to decrease the dose, I have to stop driving. So that makes it tough. I haven't had any seizures on this dose, and would like to try a smaller dose, but not at the expense of driving. Anyone else have that issue?