Well, the subject pretty much says it all. So far I’ve had verapamil, Effexor, Inderal, Diamox and Serc fail, so this is the 6th medicine trial. This one is Neurontin. Supposedly, for MAV meds, it’s about innocuous as they come.
I’m a bit cynical about the idea that any given medicine will actually WORK.
Recently, I feel like I’ve got lead weights tied all over me – I always feel like I’m going to fall, or like there are unseen forces shoving me every which way. So it IS still possible to continue to get worse … imagine how thrilled I am to be finding that out.
George - please don’t loss hope. Serc wasn’t a likely one for MAV. And, please, remember that several meds you had difficulty tolerating and did not get to a therapeutic dose. It would be a different story if you tried 6 first line treatments and got to a therapeutic dose on all and nothing helped. You have several more meds to try. hang on. From my experience, sadly, this can always get worse and has for me. It seems like it can progress until you find the appropriate treatment.
Hey George. I’m sorry you’re moving on to yet another medication. May I ask…are you taking anything for dizziness?
MJ - migraine preventive meds are actually used for the dizziness. The thought is that the dizziness is a migraine symptom, along with all the other strange and debilitating symptoms that we experience. From my experience, there is no med specific for the dizziness. When the “migraine” is treated appropriately the dizziness should go.
Thanks for the words of encouragement, Lisa. I admit, “hope” and I aren’t close friends; the huge physical discomfort tends to counteract my attempts at optimism.
OK – some here have tried DOZENS more Rx’s than I have, and they’re justified (a lot more than I am) in feeling jaded. But, medicine seems to be lose-lose for me. Either it does nada (if I reach the target dose) or it permanently worsens the Sx’s before I’m even near target dose. I’m tired of getting WORSE on half the Rx’s I try.
I know we tend toward the med-sensitive side, I think to myself, but geez, how completely screwed-up of a brain do I [we] have to have, that I’m [we’re] dizzy for months, getting worse, and can’t even tolerate many drugs?
To top it all off, we have no idea WHAT’S happening upstairs in MAV’ers. As the other Lisa said, current medicine can’t even test chemical levels in the brain. Until we can do that, treatment will probably never go beyond hit-or-miss drug trials.
I hear you, George. It’s easy for me to tell you to have hope, but as you deciphered from my posts, I am hopeless and depressed right now. It is truly difficult to be optimistic with this illness. I keep on trying to tell myself that people do get better. True - most drugs make us feel worse at first. that surely happened to me. I think it’s important to try very hard to stick it out. I had such a difficult time withstanding the side effects of nortriptyline in the past, but I will most likely try that drug again and try my very best to stick it out. As far as being unable to test chemical levels, that doesn’t mean we won’t get better. People who suffer from psychiatric disturbances are unable to test their chemical levels as well, and there is trial and error that goes into choosing the right drug, but mostly people do end up finding a helpful med. And we, hopefully, will as well. hang in there
I am so sorry you feel so hopeless. I can certainly relate to those feelings as I too feel that way daily. Don’t let the Serc trial get you down as I was even surprised Dr. Hain gave it to you. Verapamil is generally well tolerated and I was wondering what happened for you during your trial with it? May be worth another try?
Hang in my friend. Easier said than done, I know…
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Verapamil is generally well tolerated and I was wondering what happened for you during your trial with it? May be worth another try?
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It did absolutely nothing, neither good nor bad. (I think this is about MAVLisa’s experience with it too.) I took verapamil (long-release) at 120 mg from Mar. 26 to Apr. 26, then 180 mg from Apr. 27 to June 3.
What’s odd is that a verapamil, a calcium-channel blocker, didn’t hurt me at all, whereas a “cousin” drug, a beta-blocker, really threw me into the inner circles of hell.
As I think I’ve said before, Hain hoped that Serc might stop the motion-sensitivity component to my thing. It’s not specifically for migraine prevention. He saw that Effexor WAS effective with visual dependence, so he figured that if we could negate the motion-sensitivity problem it brought, we could potentially bring Effexor back in.
I wonder if Effexor (or verapamil, for that matter) would work on the symptom of rocking vertigo. Both failed to help the overall dizziness, but I didn’t have rocking at the time I tried them. … If I could just get rid of this blasted rocking, I’d be much more optimistic.
The reason I asked more about verapamil was because of it’s tolerability. If you take a look at the literature, the therapeutic dose is 240-360 mg for the majority of MAV and migraine patients. I am just starting at 240 mg today and although I am still suffering 24/7, I remain hopeful (barely) in now that I am finally at a therapeutic level. It took me a long time to get to this dose as my doc went very slow with the titration schedule. Since you only got to 180 mg, it might be worth a try. I know that Nance had rocking as bad as you and I and verapamil shut it down completely but it took her about 4.5 months for this to happen.
Beta-blockers and calcium channel blockers, although both used for treating high bp are not in the same class of meds and have very different mechanisms of action.
Just a thought. I wish I could give you more hope with verapamil based on my own trial thus far, but I know others that this med has helped a lot. I started with this med based on it’s tolerability. Just wished it helped my symptoms more. We will see.
Lisa - glad to hear you are increasing the dose. Wishing you well.
George - Verapamil didn’t change my BP and pulse at all, but beta blockers significantly lowered my BP and pulse. Furthermore, I reached 480mg on Verapamil, while I was on the smallest doses of beta blockers. definitely different drugs.
Hain and Cherchi don’t go beyond 240 mg of verapamil in their practice, so if they did put me back on it…
Nance says it took “3 1/2 months on the med to get to 100%”, at only 120 mg. I was at 120+ for 2 months, so I’m inclined to agree with the doctors: “If it’s going to help you, you should see SOME progress by 4 or 6 weeks.” Who knows, maybe 240+ would’ve helped, or maybe I quit too soon, but verap. is out, for the foreseeable future.