Migraine

I just thinking out loud and venting here. I've been on many medications over the last several years for my migraines. They all seem to work for a little while but eventually stop. The period where they're working keeps getting less and less. I'm at a point where nothing is working . . . period.

I know that there are many other things to try yet but I'm so tired of all the side effects from all the various medications. I have yet to find one that doesn't eventually create miserable side effects. It's frustrating to be dealing with the side effects from the various medications and NOT be getting any relief from them.

I'm beginning to think that I would be better off if I didn't take any preventative meds and only took the triptans and rescue meds as needed. Since the preventative meds don't seem to ever help the frequency or the severity for any length of time and I'm basically using the triptans and resue meds to function, why not skip the preventative meds and their awful side effects?

I just feel like not only am I dealing with the migraines and their frequency, I'm dealing with the many side effects, giving myself a double whammy. I question whether I'd minimize the stuff I'm having to cope with to only migraines by eliminating the preventatives.

I haven't done anything and will talk to my doctor about it when I go in next. I am curious as to how I would feel on nothing but my relpax as needed. I haven't been free of daily meds for almost eight years. I'm only thinking out loud. Thanks for listening.
(Can you tell I'm irritated?)

Hoopsky- I'm almost with you on this one. My husband and I were discussing at dinner the other night how bad the various drugs we are both on makes us feel. We decided it would be nice if we could go to a beach in Portugal for 2 months to "detox" our bodies! Unfortunately we have bills to pay at this point so this isn't an option!
I'm so sorry you're feeling so crummy from all the preventitive meds- and I'm sure you've tried lots of them at this point. Here's a hug I know you're tired and frustrated- but I can't help feeling that there IS an answer for you- don't give up hope that there is a preventitive that will work for you.

Let us know how you are feeling later, okay?

Valerie

I think we all understand what you are feeling. VENT AWAY!!!

It is so frustrating going on meds that make you feel worse, and aren't helping.

But don't give up! With so many preventives, you'll find the one that is right for you eventually!

(If I say it enough maybe I'll believe it too! lol... )

Can I just add to your vent one thing?

How about all the MONEY we are shelling out for meds that make us feel awful and don't work. Uhm, I can feel like awful for free!!!

Hope you're feeling a little better about things today Hoops!

Hoopsky when I was talking to my manager about what was going on with my health she asked me how long I would have to be on these medications. I said I didn't know. It's a scary thought. I don't know. And you're right. How long?

Two years ago I went on a vacation before I was on preventables and was on a boat for 10 days pretty out of touch. I had 2 minor migraines. But I was under NO stress. It was amazing how well I slept, ate, relaxed, everything. I don't know when I have ever felt so good. It was probably the best prevenative I have ever been on!!

I do wonder if by the time I find the right combination if menopause will be over and I can stop some of the medications.......

Take care,

Cindy

Hoopsky,

I understand how you feel. I've been on several preventatives and had to talk to my doctor about the side effects being being terrible and not doing anything to help my migraines.

I had one preventative that I was on not to long ago that made me so moody and mean and when I told my doctor he said he had never head of that side effect. I told him that I wanted off the med just to see if that was it. Lo and behold, I was back to my happy self in no time.

Thankfully, the preventatives I'm on now don't have side effects that bother me to badly. Hang in there. It's a long road but you'll get there

I've been on the preventive wagon since about 1990. It's discouraging to have to take a handful of pills twice a day, isn't it? My last good preventive stopped working in late December, 1999. I've been looking for a good strategy since then.

Don't give up. I think I'm finding a good regimen for me. I was having daily pain of 5 or 6, with 7 or 7 1/2 several times a week. I'm seeing a specialist now, and she has added MORE meds to my strategy, but they're beginning to work. I'm not pain-free, but the daily pain is down to a 1 or 2, and the higher pain is responding to abortives pretty well.

My doc says there's an effective regimen for everybody. It's just a question of finding it.

Gretchen in Mississippi

Hoops i'm lying around with a fever so i'm not sure I'll make much sense. I haven't done any preventive meds yet. Not because I'm afraid of side effects but because for 4 years my migraines were under pretty good control with regular meditation. Lately they have gotten worse. I'm going to talk to the mig specialist about preventives in June when i go.

The doctor i used to see until he moved 2000 miles away (who i think is great), Dr. Livingstone, talked a lot about weighing the cost/benefit. He claimed the average success rate for preventives was 40% reduction in frequency & severity of migraines. I'm sure that info is 4 years old and I havn'et researched it. He also showed me research indicting that regualr meditation and relaxation practice had a 40% success rate, too. I've always thought - if you can do both, can you get an 80% reduction? That would be worthwhile!

But are the side effects worse or the migraines worse? You're the only one who can say. One of our dilemmas is, as migraineurs, with sensitive nervous systems, we tend to be sensitive to medications, as well! It's just got to be a process of finding your best balance of all the factors.

I don't know if that was the least bit helpful. I hear you, though, and feel your dilemma. Good luck, dear!

- Megs

I think my biggest gripe - and biggest challenge - other than the chronic migraines themselves are the side effects from all the meds. So far, out of the five preventives I've tried, I've had intolerable side effects from all five. That's not very encouraging.

I don't know that I really have much to tell you that's encouraging right now, actually. But I do know where you're coming from, because I'm there too.

Has anyone who's been on preventative meds for many years actually gone off them for a while? I'm curious. I'm only on namenda and bisoprolol (but that's for high blood pressure). I'm thinking it might be beneficial before I try a different preventative to get a feel for what actually is going on. I've not been med free for so many years. Maybe . . . just maybe . . . I'm not doing that badly and the meds are causing my migraines to be worse than they would otherwise be. My husband is always alarmed because every med I try lists "headaches" as a possible side effect. Makes one wonder . . . thinking out loud again. Thanks for listening.

Almost every med I take (and I take a LOT) lists Headache as a POSSIBLE side effect. Even the triptans list Headache as a POSSIBLE side effect. But I don't think my head pain is a side effect. It's worse when I"m not on a preventive or when I'm on a preventive that's not working. And in the 17 or 18 years I've been on preventives, that has happened several times.

But all the listed possible side effects are just that, POSSIBLE. They're not automatic. They're not guaranteed. Nobody gets all of the listed side effects, and most people don't get any. Get on the net, google the name of the drug, and find the FDA-approved labeling information. It will usually be on a site that's named for the drug itself or on the manufacturer's site.

The labeling separates the side effects into groups: frequent, [something in the middle that I can't remember], and infrequent. For the frequent ones, they often have a graph with information on what percentage of people in clinical trials who had which side effect.

I'm taking Lyrica, which is helping a lot in my migraines. It lists dizziness as a side effect with a very high likelihood. Maybe 20 or 30%. I haven't had any dizziness problems, and I've been on it since November. It also has a high possibility of weight gain. When I was titrating up, I had a week or two of craving sweets. I'm losing weight on Diet Center, and my weight loss stopped when I was having those cravings, My doc changed the dosage, and the cravings went away, and I started losing weight again (47 pounds and 3 dress sizes and a complete new wardrobe!).

Don't be afraid of preventives because of POSSIBLE side effects. You could have a wreck every time you get in the car, but you still drive, don't you? Think of preventives in the same way. If they don't work, or you get intolerable side effects, you can stop the med, and the side effects will stop.

Finding a preventive is an auditioning process. You can't tell if a med is going to work unless you try it.

Gretchen in Mississippi

I didn't answer your question about stopping preventives. I've had drug holidays when I was between preventives. My daily headaches and migraines were worse when I wasn't taking anything. I don't remember how long every drug holiday was, but I know that I had to have a 6-week washout when I stopped Nardil. My head was horrible, and because Nardil was also my antidepressant, my depression worsened noticeably.

I've usually had some kind of washout between preventive, and they were miserable. My head always got worse, even if the preventive wasn't working. But you might have different results.

Some of my preventives did make my head worse. Verapamil was one, and Topamax was another. I'm one of those who couldn't tolerate Topamax. I gave it a 6-month trial, and I was miserable the whole time. Verapamil made my head worse and made me terribly constipated.

But I'm taking a small dose of verapamil now, and it has actually reduced my headaches. So you never know.

Gretchen in Mississippi

At the advice of my first neuro, I titrated off of Topamax in June 2006 after 2.5 years of wonderful success - no CDH, maybe 3-4 migraines a *year*. Within a month, my chronic dizziness and nausea were back, followed shortly by my CDH and migraines. It took me a while to figure out that yes, it was my CDH and migraines coming back and *not* allergy problems, so it took until December for me to go to the doctor about it.

I saw a new neuro (because I had moved) in February 2007, and since then I've been trying to find a preventive that works. I've had no success. So from June '06 to February '07 I was on no preventives, and only felt worse and worse during that time. Since Feb '07, while I've been auditioning preventives, my migraines have continued to get worse, became chronic, and now I've had this migraine since November.

I'll never know for sure if coming off Topamax was really the bad idea it looks like it was. It could have stopped working for me anyway, even if I stayed on it.

I'm not sure if this wasy any help, but I figured I'd at least share my experience.

I understand your frustration completely and have only been dealing with Migs and PDHA for five months now. I can't even fathom the idea of dealing with this for years.

"One day at a time" I have to keep repeating that to myself so I don't go off the deep end. My wife is very supportive but she is on Ribivirin and Interferon for Hep C so she has her own dragons to slay.

I did actually go off all preventive medications following the recommendation of my neurologist at the time. We did it all at once in the hospital with IV sedation to get me thru the nausea and headaches from the sudden cessation of medications. The idea was to see if maybe I was on too many preventives and would do better without them.

However, within 2 weeks of this crazy trial, I was having CDH with BIG migraines 2-3x/week.

Mr.So-Smart Neurologist refused to restart any preventives--so I fired him!!

Hey Hoops,

I can't answer your second post, because I have never taken a break from my meds, but I wanted to add to your original post.

I totally get your frustation. I too, sometimes wonder if the prevenatives side effects are worth it. Like you, I get so sick of being sick. So, like the other's have said, you are not alone. I have not been on them for years, but I do understand. When I upped my topa, it was aweful. I had to go back down. Even when I take every new med I wonder how is this going to effect me.

It wasn't until I went to my new doctor that I actually think I am seeing improvement. Like Gret, I am taking a small dose of verapamil now, and it seems like it might be helping along with frova. So, I do see hope.

Whatever you decide, we are here for you and totally "get it". Hang in there


Dar