Thinking about trying preventatives....again

Just a short background for any newbies...I had a horrible reaction to Topamax, in fact went psychotic on it, and because of poor medical care it continued for TWO years. It seems whatever I try I have a bad reaction to. Keppra made me very angry, I tremble horribly even on low does of depakote, beta blockers make me pass out. Over the last 20 years I've tried so many things with dismal results.

A dear friend said I was a "one percenter" meaning if one percent of patients will have a side effect, I will be in the one percent. I told my neuro that and after he got done laughing he agreed.

So I went the route of strictly opioid pain management. However, that has it draw backs also, among them chronic constipation (which for me led to a one week hospital stay with diverticulitis), increasing tolerance, and social stigma.

In addition to chronic hemiplegic migraine I have chronic sacrailietis. My lidocaine injections have worn off so at times I'm even using a cane until I get my injections.

I'm tired of the constant pain. With the opioids I'm still seldom pain free. The goal of a good pain management program with opioids is to make the pain TOLERABLE. So for all the folks who think I'm walking around in some drug induced euphoria? Nada. Nope. I cried the other day and a staff member saw me and asked if the pain was really bad. And I had to admit that it wasn't that bad, it was just that it won't let up...ever.

So I'm getting brave about possibly trying Cymbalta, a anti-depressant currently being advertised to help with pain issues, like migraines and lower back pain. But I've also read that Cymbalta can be terrible to come off of.

Should I try it? Any other suggestions? I don't take triptans (not effective) so that's not an issue.

Thanks.

I was unsuccessful with majority of the preventives (preventatives?).
For me Topamax is tolerable. But I know is out of question for you.

Some members were successful with Neurontin?

I hope you'll get better advice than this, Char.

Risa

I've had a bad time with side effects also. I couldn't do Topomax either. Cymbalta gave me restless leg syndrome. Another of those low probability side effects, but lucky me, I get it. That said, I'm not sorry I at least tried it. So I don't have to wonder what if. I think the big key is to be alert to the possible side effects and not let yourself get talked into staying on something that is not working. Sounds like we have both learned that lesson the hard way.

I gave topomax a go and it was not a good time. I ended up having a whole lot of trouble with it. I wish I could have seen good results like a lot of people have.

MGirl,

How long was it til the RSS showed up? Were you on a pretty low dose? Oh, I'm just scared to death, with the topamax thing I actually ended up in a locked psych ward. Luckily I now have a good Dr that I TRUST and I'm willing to dip my toe in the waters again.

Plus, I have family and friends on high alert whenever I change any type of med. The topamax incident made me realize that I'm not cognizant of what is happening and need honest input from folks around me.

I promise to be here for you Char and will give you honest feedback if I notice any changes. Promise.

I started out on 30 mg of cymbalta and then went up to 60 after about a week. The RLS showed up right away after about 3-4 days, even before I went up to 60 mg. It would start in the evening around 8-9 at night and keep me awake until 2-3 in the morning. It really drove me nuts. About the only way I could sleep was in a spare room in the basement where it was very cold. No idea why that seemed to help. I stayed on it for about 6 weeks and it never got better, so I feel like I gave it a good try. But I think that is a very unusual reaction. And while annoying, it is not something frightening.

I agree that it's a good idea to have family and friends monitor you if you are afraid of being effected mentally and not being cognizant of it. And I've learned to be very vocal with my doctor if something is not working, Being a compliant patient has gotten too many of us into real problems.

Restless legs have to be one of the worst side effects! Makes me crazy....and I could never, ever stay on a med with this side effect. I can't believe you managed six whole weeks!

Yes, I can't believe I stuck with it that long either, but that's how long it was until my next doctors appt, and he was impossible to get into any sooner or even reach. I'm a lot less complacent now after so many different side effects. It's been both bizarre and maddening.

Okay, Milo, I'll hold you to that. But, you'll have to get on the dreaded phone cause during the topamax debacle I just disappeared for two years.

As crazy as my work life has been though give me a couple weeks though, cause I'm probably just sitting in a meeting some where half way across the state.

I see the neuro Monday and will talk to him about it then.

I want to encourage you because you are in a far different place with your current neurologist. And you now have Milo helping you

If you happen to read this before Monday, tell your neurologist hello from us. Ask him when he is moving his practice to the Twin Cities. We really need him here

Cheryl

Cheryl,

HORRORS, the thought of him leaving!! I'm only willing to try this because he's given me reason to trust him. I will certainly tell him hello for you though.

Don't worry, he won't leave his beloved city

Have a productive and safe trip!

Cheryl