Anyone On Lyrica?

[lorrie]

This post may have too many topics going on at once, but I am sick and confused. I need your opinions and experiences and maybe I can get a grip on things. Here goes...

I have two types of episodes. One is where I get suddenly nauseated and dizzy. I have to sit very still and sometimes it passes in 15 - 20 minutes and other times, I end up passing out and becoming very disoriented and have slurred speech and can't focus or carry a conversation for upwards of an hour or so. I had one of these episodes on Wednesday evening. It had been a couple of months since my last one of these episodes.

The other type of episode (which is much worse and harder on my body) is where I out of the blue start sweating profusely, I feel the blood draining from my face and feel very flushed, I become extremely hot, my chest pounds, my arms go numb, vomiting, nausea, I pass out, sometimes lose control of my bowels, HR rises to 110 - 150, BP goes crazy like 110/40 - 180/30, I get severe headaches, and have numerous other symptoms. At the end I have severe chills. Afterwards, all I can do is sleep and it normally takes me up to 24 hours to start feeling better. I had one of these on Sunday morning.

I had an appointment with my POTS doctor yesterday and I told him about the two episodes within the last few days and he said that was "normal". He meant normal for a POTS patient, but it doesn't seem normal according to what you all post on here. Do any of you have more than one type of episode? Do you go months without an episode and then have several close together?

I also want to know if any of you have experience with Lyrica? I have nerve damage and have just about lost the grip in my right hand. The doctor says Lyrica can help with the nerve pain. He also wants to do carpal tunnel surgery to see if that helps any. I opted to put that off until I see what the Lyrica does.

I feel so confused because even with a POTS specialist telling me that my symptoms are normal, I sometimes doubt this is POTS at all. I already take tons of medication and hate to start another. The month or two feeling fairly healthy and then being hit like a freight train gets so frustrating...I just feel like giving up!!

Sorry I am rambling and long winded...I think I just needed to write it all out and vent. If you managed to make it this far through my pity party, thanks for reading. Any input is appreciated.

[Guest Sandy Sims]

What you are describing is EXACTLY what happened to me on Lyrica--took me almost a YEAR of slow slacking off to get shed of the stuff.

Why?

I'll tell you what it's taken me two years to find out.

Lyrica affects your blood sugar--what you're describing may well be reactive hypogycemia. Hypogycemia causes adrenal surges in an attempt to raise your blood sugar to keep brain functioning. This adrenal surge explains your symptoms.

Do NOT stop this med suddenly--hypogycemia can be serious stuff!

DO get a glucose tolerance test done ASAP--with INSULIN levels. Your body may-at first--be able to keep glucose stable with higher levels of insulin and adrenal surges so your glucose levels may not look too awful low or high --may not even get anyone's attention--at first--but this will not last forever. After while your body will run out of insulin and adrenaline to support your lowered glucose from Lyrica--and then you'll be looking at diabetes!!!

High insulin levels on glucose tolerance testing will show docs what's going on.

Metformin will help.

DO fast for the FULL 12 hours prior to the test.

Does eating sugar make this worse?

Is it bad when it's been while since you ate--say at night?

TELL DOCS THIS NOW!!!

Here's some links to info in simple English.

http://www.netdoctor.co.uk/medicines/100005038.html

http://www.hypoglycemia.asn.au/articles ... xiety.html

http://www.netwellness.org/question.cfm/27344.htm

http://www.journalarchive.jst.go.jp/eng ... rtpage=413

Hope this helps you--'cause NO ONE should have to live thru the past two years of this I've had to survive!

Utill then, eat many small meals with low carbs and sugars and drink lots of water to keep your kidneys from being damaged and to keep your BP/pulse more stable.

[Guest Sandy Sims]

I just noticed you're ON metformin!!!

You already have high insulin levels and are taking lyrica???

It may be the drugs you are taking for all you BP problems are making your sugar problems worse. Drugs.com is a good site to about learn this.

Could also be your POTS symptoms are more about blood sugar than you know.

Check into your glucose and insulin levels and you may get to the bottom of much that is keeping you ill. Hypogymcemia is very dangerous.

DO NOT STOP ANYTHING on drugs you take now!!!

SEE A DOCTOR!

GET RE=TESTED FOR BOTH GLUCOSE AND INSULIN LEVELS.

[momofsara]

Sara questioned her doctor about taking Lyrica and was told NO--under no circumstances would she be prescribed Lyrica.-We were told it would be bad for the dysautonomia and cause her to have more symptoms. Best of luck and be sure to be very careful of the Lyrica..... Susan

[bgsu4]

I have been on Lyrica for two years for my dysautonomia. My neurologist, Dr. Thomas Chelimski, put me on it when I started to see him. It can actually help to calm the nervous system down, it's been approved for treating anxiety disorders in Europe(I believe its being considered in the US) but is primarily used for the treatment of nerve pain in cases such as cancer, diabetic neuropathy and shingles. One of the rare side effects is hypoglycemia, I don't have my PDR with me at the moment so I couldn't tell you the incidence.

It does seem to calm my system down, I have tapered off a few times to try something different and noticed I became "wired" again. The only thing that has ever helped me was a 1mg dose of Xanax xr. For 5 months I could exercise, drive, sleep and had no episodes. My episodes are quite similar to yours however I have not fainted. These episodes are unfortunately the norm for people with POTS/dysautonomia. Lots of people on the forum have "episodes"(I call them that also) everyone has different symptoms and I'm sure they are caused by many different things.

Everyone also reacts to medications very differently. I have seen people with mild high blood pressure need more of a beta blocker than someone with high blood pressure. In Sandy's case she may be more prone to the Lyrica causing Hypoglycemia. I have had a three hour GTT with readings of fasting 97 one hour 74 two hours 110 three hours 55. Not perfectly normal but I haven't had a reading below 65 on the Lyrica (and I check now and then) and I'm usually between 80-100 even when I'm having an episode.

Lyrica is not perfect and I would love to try a low dose beta blocker but seeing that my HR at rest is usually 48-54 and at times I have a low BP I'm still cautious. Do a search and you will see a few threads about Lyrica and what some of the others have experienced with it. Everyone's syndrome is different ie. causes, symptoms and reactions. Good Luck and I hope you are able to find some relief (I really hate those episodes also).

[Ernie]

Hi,

I have that type of syncope. I absolutely need to sleep to recover and it takes me 3 days to get back to my normal. When I was fainting every day I never got back to normal and was stuck in a whilwind.

[ramakentesh]

Yeah I can relate to both varieties. The second one is the worst - thats what happened to me at work a few days back in front of everyone. The amount of adrenaline in my system must have been huge!