Anticonvulsants?
-
Anonymous
-
ViewsAskew
- Moderator
- Posts: 16744
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Hi Em, I've thought of you frequently. Glad you posted to let us know what's going on.
I've not used anything but Neurontin. It didn't really do anything for me - got up to 1200 mg and nothing. Don't think it made it worse. . .but not sure. This class does not cause augmentation. Not sure how many people they help, but think - all things considered - that it's probably no more than 50%. Seems more people (just from the posts I read) get partial relief and use it in combination rather than alone.
I think you said you've decided not to go to the convention. is that right? Just wondering if I get the pleasure of meeting you in person.
I've not used anything but Neurontin. It didn't really do anything for me - got up to 1200 mg and nothing. Don't think it made it worse. . .but not sure. This class does not cause augmentation. Not sure how many people they help, but think - all things considered - that it's probably no more than 50%. Seems more people (just from the posts I read) get partial relief and use it in combination rather than alone.
I think you said you've decided not to go to the convention. is that right? Just wondering if I get the pleasure of meeting you in person.
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.
Hi, Em
I've had experience with Topamax and it was not good. My neurologist kept increasing the dosage until I was on 400 mg. daily. I'm no longer with the neuro.
As we've said often, everyone is different, but I have heard of quite a few people who have had problems with Topamax. Many people may take it with no problem at all.
As with anything like this, if you have a funny feeling about the drug, I would talk to my doctor.
Glad to see you back! Good luck.
Jan
I've had experience with Topamax and it was not good. My neurologist kept increasing the dosage until I was on 400 mg. daily. I'm no longer with the neuro.
As we've said often, everyone is different, but I have heard of quite a few people who have had problems with Topamax. Many people may take it with no problem at all.
As with anything like this, if you have a funny feeling about the drug, I would talk to my doctor.
Glad to see you back! Good luck.
Jan
No one is alone who had friends.
Hi Em! I'm sorry your symptoms are still bothering you... neurontin has worked really well for me but after using it alone for 2 years it seemed to not be enough (no matter high my dose went). Like Ann said, I think this this class of drugs works well in combination with other drugs.
Em- I can't remember if I ever asked you this... have you ever had an CT/MRI of your spine? I just keep getting this feeling that your RLS is so severe that something else may be going on. Of course, you've been dealing with this for so long now- you may have already done that? Just a thought. My thoughts and prayers are still with you!
Em- I can't remember if I ever asked you this... have you ever had an CT/MRI of your spine? I just keep getting this feeling that your RLS is so severe that something else may be going on. Of course, you've been dealing with this for so long now- you may have already done that? Just a thought. My thoughts and prayers are still with you!
Josh
Em
I recently had major back surgery and I've never had a back injury, either. Never been in an accident, never hurt my back.
I don't know if some of the problems you've been experiencing could be attributed to a problem with your back, but it might be worth a try.
I have RLS an have had it all of my life. I was dxed with fibro and PN. However, it was finally discovered, after 2 1/2 yrs., that I had 6 herniated discs in my thoracic spine and that was causing the numbness on my left side (it started in my face) and several other symptoms which were getting progressively worse. I don't have fibro after all and just a very small amount of nerve damage in my left toes.
I'm not suggesting that it is your spine, but it might be something to think about if you're at your wit's end.
Of course, I'm not a doctor or a nurse, but I can only tell you my experiences. In any event, whatever you decide, I wish you the very best. You've been suffering for a long time and I so hate that!
Sincerely,
Jan
I recently had major back surgery and I've never had a back injury, either. Never been in an accident, never hurt my back.
I don't know if some of the problems you've been experiencing could be attributed to a problem with your back, but it might be worth a try.
I have RLS an have had it all of my life. I was dxed with fibro and PN. However, it was finally discovered, after 2 1/2 yrs., that I had 6 herniated discs in my thoracic spine and that was causing the numbness on my left side (it started in my face) and several other symptoms which were getting progressively worse. I don't have fibro after all and just a very small amount of nerve damage in my left toes.
I'm not suggesting that it is your spine, but it might be something to think about if you're at your wit's end.
Of course, I'm not a doctor or a nurse, but I can only tell you my experiences. In any event, whatever you decide, I wish you the very best. You've been suffering for a long time and I so hate that!
Sincerely,
Jan
No one is alone who had friends.
Em
Good luck. I hope I haven't given you false hope, but I do think it would be worth a try and am glad you are going to ask for an MRI. I had MRIs on my lumbar and cervical spine which were negative. I finally had one my my thoracic spine, and that's where my problem was.
As I said, I definitely have RLS, but I have to tell you---since my back surgery, I haven't had one episode. I know I'm not "cured", but it may have helped me. My spine was a mess. BTW, I'm still taking all of my RLS meds. Before the surgery, I would have breakthrough RLS, even on Mirapex and Clonazepam. Now, I don't. And, I'm down to two pain pills a day---not strong ones.
Even if something is wrong with your back, it doesn't necessarily mean you'll have to have surgery.
Please keep us posted. Oh, about the fibro---- I was dxed by a former neuro who didn't even check out anything else. I ached all over and had classic symptoms, but it was apparently all due to my back. People who know me say that I look better than I have in two years. My face doesn't show the strain of the constant pain I was in (my joints, etc.). And all of the numbness is totally gone.
Jan
Good luck. I hope I haven't given you false hope, but I do think it would be worth a try and am glad you are going to ask for an MRI. I had MRIs on my lumbar and cervical spine which were negative. I finally had one my my thoracic spine, and that's where my problem was.
As I said, I definitely have RLS, but I have to tell you---since my back surgery, I haven't had one episode. I know I'm not "cured", but it may have helped me. My spine was a mess. BTW, I'm still taking all of my RLS meds. Before the surgery, I would have breakthrough RLS, even on Mirapex and Clonazepam. Now, I don't. And, I'm down to two pain pills a day---not strong ones.
Even if something is wrong with your back, it doesn't necessarily mean you'll have to have surgery.
Please keep us posted. Oh, about the fibro---- I was dxed by a former neuro who didn't even check out anything else. I ached all over and had classic symptoms, but it was apparently all due to my back. People who know me say that I look better than I have in two years. My face doesn't show the strain of the constant pain I was in (my joints, etc.). And all of the numbness is totally gone.
Jan
No one is alone who had friends.
anyone get worse from anticonvulsants
Hi Emily I am glad to see that you are back posting, but so sorry that you are still not doing well. You are in my prayers everynight. Please keep us posted on how you are doing. Jan's post was an excellent one and I know others will post to you too. I pray everyday that you will get some good relief that you definitely deserve.
Charlene
Taking one day at a time
Taking one day at a time
-
ViewsAskew
- Moderator
- Posts: 16744
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Em, secondary RLS is what usually progresses rapidly, not primary. In secondary, somethings else is causing it. I'm sure you have - but in case - have you read the sticky with the info on the possible causes of secondary? Some are pretty obscure, but something has to be going on.
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.
-
ViewsAskew
- Moderator
- Posts: 16744
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Yep, it's crazy.
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.
Hi Em
Well, as to how to ask your doctor to order MRI's, I would just be totally honest, tell him that something is going on and you have to find out what it is. It may be secondary RLS--but, as Ann said, something is causing it.
I don't see why they couldn't do MRI's on all the sections of your back at one time. Mine were done separately because the first doc I went to didn't have a plan. The neuro surgeon, who was the one who ordered an MRI on my thoracic spine, was amazed that I hadn't had an MRI on that area of my back.
Again, I'm certainly no expert. I've just been through two and a half years of not know what is going on. So, just be honest and very direct. You sound like you are a very determined woman. I finally had to get angry and tell my doctor that something was wrong and I wanted to know what it was (or wasn't).
Again, good luck. I'll be saying a prayer for you, too.
Jan
Well, as to how to ask your doctor to order MRI's, I would just be totally honest, tell him that something is going on and you have to find out what it is. It may be secondary RLS--but, as Ann said, something is causing it.
I don't see why they couldn't do MRI's on all the sections of your back at one time. Mine were done separately because the first doc I went to didn't have a plan. The neuro surgeon, who was the one who ordered an MRI on my thoracic spine, was amazed that I hadn't had an MRI on that area of my back.
Again, I'm certainly no expert. I've just been through two and a half years of not know what is going on. So, just be honest and very direct. You sound like you are a very determined woman. I finally had to get angry and tell my doctor that something was wrong and I wanted to know what it was (or wasn't).
Again, good luck. I'll be saying a prayer for you, too.
Jan
No one is alone who had friends.