Help with getting of meds?

[renee97]

After what seemed like forever, even though it was only six weeks after losing my Cobra health insurance, my Neurologist prescribed an affordable anti-seizure medication: Phenytoin. Yes it is affordable, but I have been trying to get off Lamictal since about the middle of August. I was at 700 mg per day. I had to stop at 400 mg for three weeks because things were getting so bad that I was not sleeping or able to do much of anything.
After a few weeks at 350 mg., on October 22, I brought it down to 300 mg. and on October 30 down to 250 mg.
One night a massive headache, this morning I did not know if I was sick or what. Took me three hours from getting out of bed, to be able to sit at the computer.
I hate this. I am at the point of stopping all these damn meds and letting the seizures happen all the time.
LR

 

[Bernard]

Hang in there. It takes a while for the body to adjust to changes in the med dosing.

 

[Zoe]

You may want to cut down the dose more slowly, making it easier for your body to adapt. Your pharmacist may have information on what is considered a safe plan for withdrawing from the drug.

 

[esqui8]

$ HELP with meds

Have you contacted:

pparx.com ??

Great folks, helpful, courteous and know what they are doing. They helped me getting anti-seizure and LUPUS meds.

esqui

 

[renee97]

All of which is so out of date as to be silly. At the very end of 2007 I switched MD's at which time they assisted in my getting off of (in order) dilantin (which took a month), Lamictal (which I stopped when I ran out), and Keppra (ditto because I had a good supply of this). All of which were replaced by Depakote ER in February 2008. This is the only anti-seizure med I have been taking since 02/08 and it has been all I have needed. Only one small problem was the tonic/clonic seizure I had on October 18th, 2008 "from out of nowhere." A blood test was taken in the ER (while I spent 8 hours there) and it was determined that the dosage of the Depakote had slipped just enough to allow a breakthrough seizure.
Just two days ago I had a visit with my Neurologist and we established what to do if I start to have "mini- seizures" or auras again.
The big problem is that I will probably run out of money because I have been unemployed and without income for a hell of a long time and my resources are so depleted I will probably lose my insurance.
Stuff it!
r97

 

[Zoe]

:You might be interested in joining this study at Johns Hopkins.
http://www.clinicaltrials.gov/ct2/show/NCT00436631?term=epilepsy+atkins&recr=Open&rank=4
You can contact them from this link if you're interested in joining the study.
You don't have to go there, they are administering it over the internet. This study is only taking adults with intractable seizures.
The earlier studies have shown the diet can be effective in reducing or eliminating seizures. Below are a few links to reports of the other studies and a support group for people who use the diet.
http://health.groups.yahoo.com/group/atkins4seizures/
http://my.epilepsy.com/node/239
http://www.aan.com/news/?event=read&article_id=2621

After what seemed like forever, even though it was only six weeks after losing my Cobra health insurance, my Neurologist prescribed an affordable anti-seizure medication: Phenytoin. Yes it is affordable, but I have been trying to get off Lamictal since about the middle of August. I was at 700 mg per day. I had to stop at 400 mg for three weeks because things were getting so bad that I was not sleeping or able to do much of anything.
After a few weeks at 350 mg., on October 22, I brought it down to 300 mg. and on October 30 down to 250 mg.
One night a massive headache, this morning I did not know if I was sick or what. Took me three hours from getting out of bed, to be able to sit at the computer.
I hate this. I am at the point of stopping all these damn meds and letting the seizures happen all the time.
LR

 

[eslucas]

Adjusting med schedules/levels

The doctors and the pharmacists may know the medical side of our illness but no one knows our bodies better then we do.

Just curious. Has anyone ever adjusted the levels of meds or the schedule they take them without consulting them based on your positive or negative results with them? After all, don't the doctors do the same thing? Try and see what works?

My neurologist has prescribed 300mg Lamotrigine per day and told me to add half a clobazam around my PMS/Period (about 5 days) I adjust the schedule a little sometimes to see if it will make a difference. So far no concrete results but I'm still working on it.