Ugh so I am confused and frustrated. I am fairly new to MAV - about 2 months deep.
Dr’s started me on propranolol (60 mgs TR) 2 weeks ago. I have been having pins and needles side effects, crazy dreams, etc. Have not found much of a change with MAV symptoms except I think it’s helped with head pressure. When I try to bump up to 80 TR, my MAV symptoms have worsened along with the side effects being much more intense (numbness, tingling, also anxiety and chest pressure and nausea).
So the doc says, ok we can now change to Amlodipine.
Why this drug? It seems most people on here are on Verapamil or Ami, or then other ssris or anti-consultants. Is it really wise to give up on the beta-blocker already? I know some say it always gets worse before it gets better. Others say they see improvement almost immediately once they find the drug that really works for them.
And to go on something so few seem to try on here (there are like 3 posts on Amlodipine)? Maybe the ones who tried it are successful so not spending time on the forum.
My doctors are supposed to be some of the best, based at MEEI. But to me it seems like they really are just shooting in the dark, and I start to worry they are even getting money for picking certain drugs for me to try? Is it bc they have less side effects? Have none of these 100+ drugs actually proven more successful for certain MAV side effects than others (and for the most part doesn’t everyone just want the vertigo/instability gone more than pain if present?!). I swear the doctors don’t get it. I need a dr who has MAV… sigh…
Cranky and dizzy and frustrated how much a crapshoot this seems in every miserable way!!
I will add the second time I took the 80 mg TR the side effects were way less intense than the first time, but I also took lorizipam to help. So maybe that’s a sign I should stay the course a little longer…
One other thought. I once noticed somewhere on this forum that someone noted that they thought many of these medications would work for most of us, it just depends how much you can deal with the particular side effects. Thoughts? Makes me think I should look up all the side effects and choose the ones that seem the most appealing to me (ha) and go with that one for awhile (ie. weight loss, hair growth, increased libido, those would be great!)
The “dizzy expert” in the U.S. is Dr. Timothy Hain. He has an extensive website with a lot of information about migraine-associated vertigo and treatments. He has a flow chart that shows his thought process for prescribing the drugs for it. I’m attaching the flow chart to this post.
@Zard I looked up amlodipine because it was one I had never heard of and was curious. Looks like it’s a calcium channel blocker. That class of medications can be used to treat vestibular migraine but I don’t know about the usage and success of amiodipine specifically. Through going to many doctors over the years I have learned that all doctors have their favorite, “go-to” meds that they tend to prescribe the most. Especially since there are so many beta-blockers and calcium channel blockers, those 2 classes in particular seem to have favorites that vary among doctors. For example, my former neurologist wanted me on Propranolol at one point along my journey, a neurologist filling in for her at another visit suggested Atenolol, and my psychaistrist prefers Metoprolol.
Also look at the results of the Big Med Poll for the med ‘what worked for me’ beauty parade.
Despite Propanolol often being the first medication people are offered you can see that presently ZERO percent of poll responders said it had helped them!!
We are thinking of adding a Category soon that will allow users to rate each medication and give their personal experience …
So weird right? I’m now thinking of seeing a psychiatrisf too since over heard people find them more comforting and open minded trying out drugs than the neuros… it’s all just so overwhelming bc all grey area w no definite results
Do it!! I did see that poll… which made me a bit biased negatively when doc prescribed it and then now one no one seems to do. But he told me to not read the forums too hahaha
@Zard The only reason I started seeing a psychiatrist was because the Johns Hopkins vestibular clinic recommended that I taper off of the Xanax. (even though the first neurologist I saw put me on it to help with the dizziness as it acts as a vestibular suppressant. However Xanax is not good to be on long term). So my psychiatrist specializes in tapering people off of medications that are tough to get off of. However, I got 25% down and got so much worse, dizziness wise and horrible withdraw, that we realized I couldn’t go down any further until the dizziness got better. I continue to see him because he’s now the one prescribing the Xanax as the first neurologist stopped practicing in my state and I’m currently stuck on it physiologically. This psychiatrist is also willing to work with the list of vestibular migraine medicines that Johns Hopkins gave me and help me try them. But he doesn’t know much about the dizziness and weird symptoms this crap causes, so I do see a neurologist too.
Do you know why your doctor said to not read the forums? I realize some can feature people in a very anxious and panicked state which causes them to blow their cases and reactions to medicines out of proportion, but I do believe this particular forum is helpful with people who are struggling to find the right medication and certainly do their research about this condition and know their bodies. I have found that it’s a great support system. I only wish my eyes could handle more computer usage so I could participate in more conversations. Most of my doctors are glad that I have a support group. I did have a therapist that I saw for only 6 sessions who told me to stop reading it as some of the horror stories can and have increased my anxiety (especially about starting medications, as medication anxiety is the main anxiety I have). I am a bit careful with the headings and do try to avoid the horror stories if I can tell the thread may be about one.
We should, like a thread topic within this forum. People should be able to look around for regional topics so individuals can possibly meet.
I think it’ll be much more helpful too when James @turnitaround implements the user location database.
I haven’t heard of those doctors.
Also, are doctors worrying about revolting? Haha. Self-help seems to be a lot of the only help we can receive, educate ourselves (see which drug is most popular and which is most effective) and act as support groups. As opposed to going to the neurologist and hearing some more info you already read and then them saying “ok, I’ll see you again in 3 months!”
Haha hard to find. There’s some restaurants you can get away with and also pending the time you go there to avoid loud sounds. I felt the first couple of months of having VM last summer my hearing was hyper sensitive. People washing dishes and clanging them made my ears feel piercing. It took a couple months for that to go away. If I’m more symptomatic than most times it kicks up again for a short period of time that day, but it’s very rarely now.
Sorry to hear about your problems. I was recently diagnosed with persistent vestibular migraine (thus MAV) and my doc tried one of the standard drugs (I forget the name) and it didn’t do anything. There were four doctors leading up to the one who had the experience needed.
Recently, I started taking low-dosage clonezepam and it has helped numb the symptoms significantly. I still can’t do what I used to do for a living (staring at computer screens), but I’m much more capable mobility-wise and I don’t rock in bed at night. My ear doc has referred me to a neurologist so they can take over.
I’ve found the clonazepam decreased the pulsing sensations and the boat-rocking. At low doses, the drug is less-habit forming (shouldn’t happen) and some days I have to take a mid-day dose, but most days just the one before bed is good. Maybe this could help you. I wish you luck!
Actually, they are. Probably not so much for vestibular conditions, because most doctors will admit they hate to treat dizzy patients and because the treatments really are a crapshoot (trial and error, one drug at a time).
But for some other conditions, such as osteoporosis, forums and websites are causing a lot of people to refuse drug treatment. I have osteo and am on a forum for that. It’s amazing how many people on there refuse to take any sort of pharmaceutical drugs, on the advice of their doctors, but they will spend a boatload of money on supplements recommended by others on the forums. Or by the huge number of hucksters out there who are marketing all sorts of “cures” to the osteoporosis community.
I have learned a lot of good information on that forum but when I mention it to my doctor I can tell that he doesn’t want to hear it. He (and other doctors) have told me that, in general, the people who participate in medical forums are the ones for whom the treatments didn’t work (or had side effects), and so there is bias against a lot of the treatments because you don’t get the input from the patients who were helped by the treatments.
Other conditions aside, regardless of the treatment you take, MAVers are probably looking at a good 2-4 years before they feel properly better so are likely to hang out on the forums until then (it’s notable that so many seem to move on with their lives after this point which is great news and heartening to us)
But sure, agree there may be a proportion of people struggling to get better who hang around longer.
To clarify, this was the doctor who treats my osteoporosis. I don’t think most “dizzy doctors” would have a problem with forums and support groups, because they know how difficult it is to diagnose and treat dizzy disorders.
I find this forum has been very helpful - everyone on here is very understanding and I’ve learned a lot about what’s ailing me even after 4 years of having and researching this shitty affliction
That being said, I used to be a part of a couple Facebook support groups. I had to stop. My god, I don’t know what it is about Facebook and bringing out the worst in people but people spiral out of control on there.
Everything I read was so negative, like “I’m 37 years old and I’ve had MAV for 72 years” or “MAV killed my dog and ruined my third marriage” - it would cause me to lose hope and become way more symptomatic. So I kind of see why medical professionals recommend staying off the interwebs and forums when you have a chronic illness
