Topamax/stupamax/crazymax

[ray]

Hi all, Long time no post but I've been peeking from time to time

I've been on Topamax for 3 months now and while it helped a little at first the side effects are to much and I need to get off it asap. I feel like the village idiot and have no idea what happened to the last 3 months of my life.

One of the weird things going on in my head (there are many when your on Topamax) is that I've been having suicidal thoughts when my RLS gets really bad. I've never had them before. I have NO plans to act on these thoughts but they are there and pretty much every day.

Has anyone else that's been on Topamax had any thoughts like this? I see my Dr. Monday and I'm going to tell him it's time to discontinue the Topamax but I'm not going to tell him about the thoughts. I don't want that following me
around in my medical records for the rest of my life.

Thanx in advance,

Ray[/i]

[D4]

... I feel like the village idiot and have no idea what happened to the last 3 months of my life.

One of the weird things going on in my head (there are many when your on Topamax) is that I've been having suicidal thoughts when my RLS gets really bad. I've never had them before. I have NO plans to act on these thoughts but they are there and pretty much every day.

.I see my Dr. Monday and I'm going to tell him it's time to discontinue the Topamax but I'm not going to tell him about the thoughts. I don't want that following me around in my medical records for the rest of my life.

Thanx in advance,
Ray

Ray, please, please tell your doctor the details about what you're experiencing. He shouldn't be expected to pick out your next medicine without knowing the serious side effects your having with Topamax. This is not a minor side effect.

I can totally relate to not knowing where the last 3 months of my life have gone. I've switched medicines many times over the last year and I'm still all messed up. I spent February and March sleeping almost all my non-working hours. And I never felt the least bit rested! Then, without changing anything, I started sleeping only a few hours a night. In February, my neurologist said he didn't understand why I wasn't responding to anything, so he ordered a MRI of my brain & brain stem, ordered more bloodwork, and referred me to Mayo Clinic. Unfortunately, Mayo was booked up until May. So I've just been trying to get through each sleep-deprived day until Mayo, hoping that they'll figure out what's wrong with me.

I knew the severe sleep deprivation was making me depressed so I went to a psychologist. Talking with him has been really helpful.

I care about you. Please tell us how your doctor appointment goes on Monday.
Diane

[ViewsAskew]

Ray, that is a nasty situation. It is such a hard decision to decide what to tell, isn't it? I remember a friend of mine. . .she was having such a hard time with her situation and told her doc about how she was feeling. While the doc didn't actually lock her up, the doc really sent into overdrive over it. It made my friend feel horrible.

When I was on Mirapex, I had bizarre pschological side effects. I was telling a friend. . .she was convinced I was depressed and that was the problem. But, I KNEW that it was the med. It was a different feeling. It was like watching myself as a third person. My decision was not to tell the doc about that part of the side effects. I told about the RLS related side effects and that was enough to make someone listen (eventually).

Let us know what happens on Monday.

[SquirmingSusan]

Ray, are you taking the Topamax for RLS? If so, it doesn't sound like it's working.

As far as telling them about the suicidal ideation, I guess that's your call. But it may be helpful for the doctor to know about that side effect, and even report that side effect so that other doctors are aware of it.

And having been recently suicidal, I wouldn't worry too much about what the doctors think. One told me I wasn't depressed, and gave me Ativan and told me not to kill myself with them. I may be depressed, but she's crazy!

The next one was so sweet, he had me just sobbing my eyes out in his office, and he asked if I was suicidal - I told him yes. He asked how I would do it, and I told him. He had me call my husband and take me to the ER, where they never got around to seeing me, let alone locking me up.

And the last doctor believed me about my depression and knew enough about RLS to know which meds would be helpful, and actually listened to my input on which meds have worked for me. The new mix of antidepressants seems to be working, and I'm feeling like myself again. When we were talking, he got kind of quiet and concerned and asked if I had been suicidal. I said yes, and told him about the psycho doc and the Ativan.

Really, this all started for me with the severe augmentation I had from the Requip, that left me in so much pain, and with such severe RLS symptoms all over my body. I wasn't sleeping much at all and was in terrible pain all day long for a couple months. Then I started back on lexapro, which did wonders for the pain, but made the RLS go nuts.

I don't know. It just seems like these drugs they use for RLS can really set people us for some weird psychiatric disorders. This stuff doesn't seem to show up in drug trials, or maybe the people who have such bad side effects drop out. You can read the fine print about the meds and find all kinds of weird things that happen to people with these meds that work on various receptors in the brain.

Sorry, I'm getting a little long-winded here. I hope you can get this figured out, and get onto something that works for your RLS without nutty side effects.

Susan

[ray]

D4- Sounds like we have something in common, too much sleep! I have a sneeky suspicion that I might be depressed and that's what's making me tired all the time but I've never had depression before so I'm not sure. I just know I'm tired ALL the time. What I'd give to have a life again...Can you keep us posted on how it goes at the Mayo clinic? I'd be very interested.

Viewsaskew- I think I'm like you in that I realize (hope) it's the Topamax giving me these thoughts and once I discontinue it it will go away. I think the Doctor has some kind of fiduciary duty to report if someone is thinking of suicide and to be honest I'm terrified that I'll get on some kind of "list" and they will take away the only thing that's worked for me which is hydrocodone. I've tried almost everything else with no luck but I'm still trying, that's why I went on the Topamax, it was my idea.

Squirminsusan- Yes, I'm on Topamax for my RLS. At the start it seemed to work great (like a miracle!) and I cut my hydrocodone intake in half almost overnight but the side effects started getting worse and worse and now for some reason it's not helping my legs (and feet) the way it was in the beginning at all...I agree with you on the side effects we never hear about. I bet your right when you said many just end up quitting the trial over them...

For anyone going on Topamax please be careful.

Thanks for all the kind replies,

Ray

[D4]

D4- Sounds like we have something in common, too much sleep! I have a sneeky suspicion that I might be depressed and that's what's making me tired all the time but I've never had depression before so I'm not sure. I just know I'm tired ALL the time. What I'd give to have a life again...Can you keep us posted on how it goes at the Mayo clinic? I'd be very interested.

Yes, we do have a lot in common. I want a life again, too. Thursday evening was like a miracle - I felt like my old self for 3-4 hours!!! I was so excited -- I called my parents, my daughter at college, and I was doing normal stuff around the house! Feeling good after feeling miserable for so many months made me unbelievably happy. I kept calling my other daughter's cell phone (we were on different computers in the same room) just to hear the ring tone she has for me and to hear her crack up. I kept calling my husband's cell phone (he was in the other room) just for the same fun. They thought I was acting crazy, but it was just so much fun to feel good. That only lasted one evening, but it gave me hope.

And maybe this wasn't a coincidence -- I had seen my psychologist for an hour that afternoon. (Hmmm, if only I could afford to see him everyday!) So maybe depression from the sleep deprivation is having a greater effect than I thought.

I will let all of you know what I find out at Mayo. I really hope they can help me and that maybe something they find for me can help others here.

[ray]

Thursday sounded great! I'm glad you had a good time even if it was just for a little while.

Don't forget to keep us posted on the Mayo. I've been thinking of trying to get in for a complete checkup for my RLS to see if they can help. My Dr is good but at this point I know more than he does about it.

Have more Thursdays!


Ray

[D4]

Ray, just a little information on getting into Mayo. My neurologist referred me, but then my records had to be faxed to Mayo so one of their doctors could review them. The Mayo neurology dept scheduling person said there is so much demand for their services, that they only want to see the worst cases. So their goal (of reviewing my records) was to see if there were other tests or treatments they could recommend to my neurologist. I have an appointment so they must agree I'm totally messed up.

Thanks for sharing my happiness from having an AWESOME Thursday evening!

Let us know how your appointment goes tomorrow.

Diane