Randy--
I have peripheral neuropathy-- your feet sound just like mine. Hopefully, you'll get some relief. I know a lot of people who take Lyrica and most seem to do good on it. I don't, yet---but may have to some day. I don't have as much pain as you're describing--but, I have numbness, "bee sting pain", electrical shocks.
BTW, I'm not diabetic. Many people who have PN are not. Mine is ideopathic.
Good luck!
Jan
Lyrica (Pregabalin)
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ViewsAskew
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I hope the Lyrica works for you. You really are having a rough time, aren't you? And, all the long hours just can't be good at all.
I wish I didn't understand the 'foggy' thing at all, but I sure do.
FYI, have you been tested for celiac disease? I have to ask everyone - it's my mission. Your neuropathies are probably not from CD, but it is one of the main symptoms that is missed by doctors.
I wish I didn't understand the 'foggy' thing at all, but I sure do.
FYI, have you been tested for celiac disease? I have to ask everyone - it's my mission. Your neuropathies are probably not from CD, but it is one of the main symptoms that is missed by doctors.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Walking After Midnight
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ViewsAskew
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Randy, it's an autoimmune disorder. It's very strange in that there are over 200 symptoms, and no two people present the same way. Some people have gastro issues, stomach issues, or nausea. Other people have neurological symptoms like neuropathy. Others get things like RLS. And some people have no symptoms at all.
They used to think it was rare. Now they know that 1 in 133 people in the US have it, but only about 10 to 20% are diagnosed. The rest have it, but don't know. They might be misdiagnosed (IBS, anemia, neuropathy, and 25 or 30 other ones), have few or no symptoms so they don't pay attention, etc.
RLS is a common symptom. It's my personal belief that anyone with RLS that isn't hereditary should have a test for it. It's the only autoimmune disorder with a treatment that completely stops it (a special diet), but untreated it can mean an early death and a 1 in 8 chance of certain cancers instead of 1 in 1500.
It's a series of blood tests that check for certain antibodies. Most doctors won't test for it without cause, but some will. Your neuropathy is what made me think of it.
They used to think it was rare. Now they know that 1 in 133 people in the US have it, but only about 10 to 20% are diagnosed. The rest have it, but don't know. They might be misdiagnosed (IBS, anemia, neuropathy, and 25 or 30 other ones), have few or no symptoms so they don't pay attention, etc.
RLS is a common symptom. It's my personal belief that anyone with RLS that isn't hereditary should have a test for it. It's the only autoimmune disorder with a treatment that completely stops it (a special diet), but untreated it can mean an early death and a 1 in 8 chance of certain cancers instead of 1 in 1500.
It's a series of blood tests that check for certain antibodies. Most doctors won't test for it without cause, but some will. Your neuropathy is what made me think of it.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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rfish1966
Giving it a try
Doctor just put me ont his. I have been on narcotics for almost a year so adjusting will take some time. So far I am pretty tired and my head is somewhere else for sure.
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Walking After Midnight
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rfish...that's exactly how I'm feeling.
This morning I couldn't even figure out how to turn off the alarm, and it took me till maybe ten o'clock to just START shaking the bugs out...and I started work at six.
I started 150 mg. twice daily...started that yesterday, up from half that.
I'm dizzy too. I was sitting on my bike today, letting some oil pressure build up and getting everything warm and I closed my eyes and almost fell off the thing. It was pretty weird. And tired....yawny.
OH well. anyway I'm just reporting the effects Lyrica is having on me...in case anyone is doing scientific research on it.
Now I'm gonna go and see if I can get through that Beer thread.
This morning I couldn't even figure out how to turn off the alarm, and it took me till maybe ten o'clock to just START shaking the bugs out...and I started work at six.
I started 150 mg. twice daily...started that yesterday, up from half that.
I'm dizzy too. I was sitting on my bike today, letting some oil pressure build up and getting everything warm and I closed my eyes and almost fell off the thing. It was pretty weird. And tired....yawny.
OH well. anyway I'm just reporting the effects Lyrica is having on me...in case anyone is doing scientific research on it.
Now I'm gonna go and see if I can get through that Beer thread.
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Carol Ann
Lyrica
Hi!
I saw my RLS Dr. at Mayo Clinic yesterday. I asked him if he knew about Lyrica and he said he did. After finding out all the possible allergic reactions and side effects from Lyrica, I decided NOT to try it.
My doctor at Mayo said that Mirapex and Requip don't have as much augumentation possibilities as Sinemet. I'm taking .5 mlg. of Mirapex at 5:30 P.M. and another .5 mlg. at 9:30 P.M. and it seems to work well for me. I did have a RLS flare-up about 2 weeks ago which may have been due to stress and/or diet. In any event, the RLS is much better now. I hardly had any discomfort from it the last few days. I hope it continues that way. My mood definitely has been better.
Carol Ann
E-mail - Csondergaard22@wmconnect.com
I saw my RLS Dr. at Mayo Clinic yesterday. I asked him if he knew about Lyrica and he said he did. After finding out all the possible allergic reactions and side effects from Lyrica, I decided NOT to try it.
My doctor at Mayo said that Mirapex and Requip don't have as much augumentation possibilities as Sinemet. I'm taking .5 mlg. of Mirapex at 5:30 P.M. and another .5 mlg. at 9:30 P.M. and it seems to work well for me. I did have a RLS flare-up about 2 weeks ago which may have been due to stress and/or diet. In any event, the RLS is much better now. I hardly had any discomfort from it the last few days. I hope it continues that way. My mood definitely has been better.
Carol Ann
E-mail - Csondergaard22@wmconnect.com
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ViewsAskew
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It's too bad augmentation hasn't been studied much. Sinemet seems to augment the fastest - sometimes in just a few doses. Requip and Mirapex seem to work for a greater length before they do cause any.
The last stats I saw were 70-100% for Sinemet and about 30-35% for Mirapex and Requip. But no one has followed ANY of these drugs in long-term studies.
Some people just seem more prone to augmentation. I've gotten it from all three DAs I tried - and immediately. Seems my brain just doesn't want more dopamine! I also had side effects that were obviously from having too much dopamine in my brain.
My current pet theory is that some of us have enough dopamine everywhere except where the movement disorders are created, hence we get too much in the other places when we take the DAs. But, others don't have enough anywhere, so they aren't affected and it doesn't cause problems. But, that's not based on anything but my brain working overtime at 1 AM!
I hope the Mirapex continues to work for you for a long time to come.
The last stats I saw were 70-100% for Sinemet and about 30-35% for Mirapex and Requip. But no one has followed ANY of these drugs in long-term studies.
Some people just seem more prone to augmentation. I've gotten it from all three DAs I tried - and immediately. Seems my brain just doesn't want more dopamine! I also had side effects that were obviously from having too much dopamine in my brain.
My current pet theory is that some of us have enough dopamine everywhere except where the movement disorders are created, hence we get too much in the other places when we take the DAs. But, others don't have enough anywhere, so they aren't affected and it doesn't cause problems. But, that's not based on anything but my brain working overtime at 1 AM!
I hope the Mirapex continues to work for you for a long time to come.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
To get back on the subject of Lyrica- I am going to start using this drug next week! I've been on neurontin for years and it's really not been working for the last 8 months. Pharmacologically, I was surprised to find out that Neurontin at higher doses becomes LESS absorbable. In my case, with each dosage increase, it's felt like the Neurontin just didn't work any better. Lyrica is extremely well absorbed and it's my fervent hope that it will allow me to either reduce or eliminate my narcotic needs. If not, that's ok too- but I feel like I have to try. As an aside, I found a great website that has a conversion protocol if you are attempting to switch from neurontin to lyrica. http://www.coventrypainclinic.org.uk/ab ... ntypes.htm
I'll report back from time to time to let folks know if it works any better..
Josh
I'll report back from time to time to let folks know if it works any better..
Josh
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walkindafloors
- Posts: 110
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- Location: Virginia
lyrica
I just started taking Lyrica one week ago. Like most of you, I have tried several other drugs, passing out after one dose of ReQuip and having Sinemet do the "on-off" thing and leaving me up for days/nights without sleeping due to exagerated symptoms of RLS. I didn't think the Lyrica was working, still being up all but 1/2 to 2 hours per night. Yesterday the doctor told me I could take it tid instead of qhs. I took one yesterday afternoon (50 mg.) and at bedtime then slept for 5 straight hours and never kicked my husband 
! I'm not ready to say this drug is the miracle I've been waiting for, but it has brought me long needed sleep. I was on the verge of loosing it. Lots of outside stressors in my life in the past month that has only helped to increase symptoms so this one night (so far) has been such a blessing. I feel like a new person today. I don't think any one drug will ever work for everyone ~ but don't give up until you find the one for you!
! I'm not ready to say this drug is the miracle I've been waiting for, but it has brought me long needed sleep. I was on the verge of loosing it. Lots of outside stressors in my life in the past month that has only helped to increase symptoms so this one night (so far) has been such a blessing. I feel like a new person today. I don't think any one drug will ever work for everyone ~ but don't give up until you find the one for you!Dear WDF,
So thankful you achieved a decent nights sleep. Lyrica made me very lathargic so in that aspect it would seem that it would help some achieve sleep. Dingy woman I be, at the time I took Lyrica I thought I'd stop taking the daily tramadol I used to control the daily RLS... my experience was RLS sensations worsened that night and I was unable to sleep. So Lyrica did not stop RLS in my case. So kept up the daily meds in addition to the Lyrica. Never did adjust to the Lyrica side affects so discontinued its use.
It is such an individualized disease.
************Positive Thoughts and Energy************ Certainly rowing the boat stirring up hope that you continue to find relief and rest.
Rowing with the others, Hazel
So thankful you achieved a decent nights sleep. Lyrica made me very lathargic so in that aspect it would seem that it would help some achieve sleep. Dingy woman I be, at the time I took Lyrica I thought I'd stop taking the daily tramadol I used to control the daily RLS... my experience was RLS sensations worsened that night and I was unable to sleep. So Lyrica did not stop RLS in my case. So kept up the daily meds in addition to the Lyrica. Never did adjust to the Lyrica side affects so discontinued its use.
It is such an individualized disease.
************Positive Thoughts and Energy************ Certainly rowing the boat stirring up hope that you continue to find relief and rest.
Rowing with the others, Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
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walkindafloors
- Posts: 110
- Joined: Tue Jul 18, 2006 4:54 pm
- Location: Virginia
lyrick
I have not tried Neurontin or other anti-seizure meds (that I am aware). I was taking Tramadol at night and stopped that when I started Lyrick - maybe I need to keep using that during the day time, ha? I am a bit concerned about the side effect of lyrick making me confused and disoriented... Thanks for the heads up. I'm kinda new at sharing any of this - today's my first time "talking" about it to others suffering along with me. That in itself helps alot - I was beginning to think I was just going crazy 
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rfish1966
Lyrica
The side effects are starting to wear off and I have slept thru the night almost every night for a few weeks....thats has not happened in years. Still a little foggy in the morning but all in all not bad. I think I will try taking it a little earlier in the evening to see if I can get the foggieness to wear off by the time I have to go to work.
Too walkingdafloors, plenty of good advise here and sometimes just someone to listen to you really helps...and if your crazy, I guess we all are : )
Too walkingdafloors, plenty of good advise here and sometimes just someone to listen to you really helps...and if your crazy, I guess we all are : )