Hi all.
I have fallowed this discussion on Lyrica withdrawal, and I will now join in with my experience on the subject.
I have severe diffuse symptoms of burning pain from Small Fiber Neuropathy. This was becoming worse gradually over months.
Rheumatologist and neurologist worked together to treat this, and I was told that " at this time we call it ideopathic, and our goal is symptomatic treatment"
The Rheumatologist first put me on large dose of Neurontin for a while. This made me very dizzy and spaced out, and I did not like that I could not function as well. I was switched to a combination of Amitripthyline and Lyrica, and was told by the neuropathy specialist neurologist that this should be promising. He later told me that his goal was to increase th Amitripthyline and slowly, very slowly decrease the Lyrica.
I have for months now had some very strange,frightening symptoms during night that wakes me up. It feels like a strong throbbing disturbing feeling inside almost like a rush, (yet when I feel my pulse it is regular and normal)
Accompaning this feeling has been a feeling of deep heat slowly spreading through my body.

I have been reporting this symptoms to my doctors. My 2 neurologists said it sounded like perhaps a simple partial seizure.

I have had regular EEG -- normal. I have had Video recprded/observed 72 hour continous EEG monitoring twice now at the hospital.
It has been negative for seizures.

The doctors have not been able to diagnose what these symptoms are ( and I do not like that)

AND, I WILL EMPHASIZE, that the symptoms I have had, is physical. Could be in the way of distroyed sensory nerves givng me the experience of bounding, trmbling, vibrating symptoms. But this is still physical.
I had one neurologist saying to me that it sounds like a panick attack. I said :"NO, I do not have a history of mental instability or anxiety"

I have come up with my own theory: When I think of it, theese symptoms seem to have started since I have been started on all these meds.

I had a nurse who specializes in monitoring this, and who is knowlegable in meds. She said that Lyrica has to be on a steady level in your blood stream at all times. This is why I tried to even the med times out to every 8 hours. This is because at first, I thought that during the night, perhaps the level became low, and I was getting withdrrawal symptoms. I started to mark down the times of the episodes. It seems to come around 1 00 am and at 5 0r 6 am. So I figured out that perhaps I had symptoms when the med was peaking and when it was too low.

I think this whole thing is very disturbing. The med helps with my pain, but I think the dosing was wrong. 100 mg in am 100 mg at 2 pm and 150 mg at bed time.
The reason being that the pain of my neuropathy pain, is worse in afternoon an at night.

I have decided to try to come off this medication. ( I think it is very strong, and it works on your brain of course to interfer with the sensory nerve's misinterprted signals.)
I will try to fallow the special neurologist's suggestion.
Doctor told me to decrease the am dose by 50 mg, which I have done for a few weeks now. And I have been able to increase the pm Amitripthyline dose to 35 mg. ( I had to decrease it before due to side effects)
I have also been able to decrease the bed time dose of Lyrica by 50 mg.

My pain symptoms are now worse, and it starts as early as 11 am, sometimes continously 24 hour.And lately, since I decreased the bed time dose, I feel that I have had more severity in those "night episodes"

So, I have definitly been able to figure out that it is important to have a "steady, same dose level of the medisine in the bloodstream at all times.

I am hoping to come to an even dose. I will ask my doctor to order it in 75 mg times 3. That will bring me to a daily dose of only 250 mg, down from 350 mg. Then to 50 mg times 3 to total 150 mg.

My neuro said Lyrica has to be tapered very very slowly.

I do not know how this will go. But I do know that I have to come off this Lyrica med.
I have ofcourse found out what I did not realize at first, this med is very powerful!! And it works directly on your BRAIN!!
I also know that as far as what is known a combination of antiseizure med and antidepression med is what works best to treat neuropathy.
I hope something different can be found.

To all of you trying this and going through this terrible things: I know you are feeling bad and frustrated.

To Mathew 92: What you are expeiencing regarding difficult to sleep, also has been some of my experience. That is because it has been so frightening when I got those physical symptoms.


All the best to all of you

Synnove