Originally Posted by PamelaJune

Hi Diandra, my seizure in 2012 was the first I have had since 1966. At the time I was 5 and now I'm 52. As a child I had them fairly often, 1966 was a biggie causing my heart to arrest. After much testing with in childhood terms lots of "pink and blue buttons stuck to my head" they concluded I was experiencing febrile convulsions, down the track they determined I would never be able to regulate my core body temperature. To this day I'm the only one I know who goes to the beach and takes a jumper! if I lie down to rest in the day my temp plummets, on waking I'm shivering with cold, in winter I go to sleep with the fan on beside my bed as I'm hot. In 1968 they said if I overheated it would cause me to seize again.

The seizure in August 2012 came out of the blue, but I was suffering acute pain with an extreme headache and had all the signs something big coming, experiencing a really offensive smell and taste for days before it hit. They just don't know what caused the seizure but the really nasty doctor I saw told me it was because of acute pain. I remember nothing, lost 3 hours completely.

My neurologist put me on Lyrica increasing me up to 300 with the plan to further increase it, tbh I couldn't see or feel that it was making any difference to me and as my friend had suffered such withdrawal I weaned off it instead. I have so many problematic illnesses my GP wants to resolve one issue before tackling another. I had a small seizure in the December of 2012 while I was still taking the Lyrica and once my script ran out, in discussion with my GP I chose not to renew it.. I've concentrated on resolving the spinal problems before tackling the head. IMO the headaches come from stress of pain I'm suffering with my chronic back pain.

The GP put me on Xanax to control my anxiety and headaches as the evidence indicates it's the headache that caused the grand mal. With Xanax you can have even worse withdrawal symptoms than lyrica as I learned it too can cause you to have a seizure! I take Xanax only when I recognise the headache is entering dangerous waters, i.e. I smell offensive odours no one else can smell, experience a horrid taste, have visual disturbance or feel like my brain is in a little boat bobbing around on the ocean or slipping sideways, sounds weird I know. I take it only on the basis I am at home, someone is here and the idea is I will go to bed and stay there until the following day. So far it's worked, this year I've only taken it 3 times, maximum dose 1mg. I will not take it daily ever again.

Lyrica is an expensive drug in AUS. I have taken amytriptaline previously but, as they increased the doseage I began to get tremors and the feeling of fogginess that came with it I disliked. Not much help to you I'm sorry, and I'm so sad that you are experiencing seizures.

I know a lot of us dislike Lyrica and in reality, nearly all drugs have side effects and or withdrawal symptoms. If you need a drug and it works for you, so long as you are aware of the withdrawals and or side effects, you can prepare and ensure you are never be in a situation where you will run out. Eventually if and when you can come off it, do it with your physician and develop a schedule so it's not putting your body or mind at risk. The drug does work wonders for many people and if you are one that can notice the improvement it may be worth the risk. Many people do not experience any withdrawal symptoms at all although you indicate you did, I'm so sorry.

Originally Posted by Dr. Smith

My wife has been using Celestial Seasonings Tension Tamer—and it seems to work for her.

Doc

Originally Posted by PamelaJune

Hi Diandra
We all seemed to get the mother lode of pain and illness. Not just the one issue for us I'm afraid!
I'm in Perth, I lived in Chula-vista San Diego and then Denver Colorado in my early 20s, in my 30th year I returned to the US and lived in Stamford Connecticut and traveled to New York every day to attend college. I loved it, I imagine now it couldn't be done, we just nodding hello strangers used to daily get on the train just after 7am and hold the ticket in our hand for the conductor to punch while we slept through our journey and the few stops we made on the way. Gosh to think that was 23 years ago this year. I used to travel a lot and have lived in a number of places. All came to a screeching halt following the car accident and the added changes it bought to my life.

Originally Posted by mary jane

@ Dr smith The lyrica cured a lady....and some others, with vulval nerve pain.

Originally Posted by PamelaJune

Hi Diandra
We all seemed to get the mother lode of pain and illness. Not just the one issue for us I'm afraid!
I'm in Perth, I lived in Chula-vista San Diego and then Denver Colorado in my early 20s, in my 30th year I returned to the US and lived in Stamford Connecticut and traveled to New York every day to attend college. I loved it, I imagine now it couldn't be done, we just nodding hello strangers used to daily get on the train just after 7am and hold the ticket in our hand for the conductor to punch while we slept through our journey and the few stops we made on the way. Gosh to think that was 23 years ago this year. I used to travel a lot and have lived in a number of places. All came to a screeching halt following the car accident and the added changes it bought to my life.

Originally Posted by Dr. Smith

I read that link, and a bit more about the condition, of which little seems to be known. The woman who made that post never used the word "cure", and acknowledges that the pain may one day return. The Lyrica was a treatment for her pain—just as it's a possible treatment for neuropathic pain from peripheral neuropathy—but it is not a cure.

Doc