Hello,
I am new to this forum so I will outline my problem. I was recently tentively diagnosed with MAV ( I am awaiting further vestibular testing). My problems began 4 months ago when I had a brief period of vertigo (I nearly passed out from it) following a cold. After that day I have never been the same. I have had constant disequilibrium - sometimes I feel like the floor is moving or it is “soft”; when I am standing I feel like I am being pulled into the earth. I have a terrible time standing still in a line up or standing talking to people. Complex visual environments such as stores can be a nightmare. The symptoms are not constantly severe - I do have some “good” periods and these seem to correlate with the weather when there is no low pressure system in the area. I have intermittent right ear pain and fullness, intermittent buzzing tinnitus in both ears, and occassional pain at the back of my neck behind the right ear.
ENG testing (caloric test not done yet) showed that my right ear was likely damaged. When I am walking or standing with my eyes closed I will fall to the right. I was surprised when my audiogram showed hearing loss in my left ear for lower frequencies. Three years ago I had another bout of vertigo that resolved in two weeks (the doctor said I had vestibular neuronitis) - at that time I also fell to the right when walking or in the dark. I have a history of migraines that were largely triggered by foods. Four years ago when I removed the foods that I was allergic to my migraines largely disappeared. When my ENT said that I probably had MAV I was surprised as I thought I had labyrinthitis or VN in the right ear.
I begain taking Verapamil SR 120mg five days ago because I cannot function at work with these symptoms. I have felt very dizzy ( I didn’t know it was possible to feel even dizzier!) and light headed since taking the verapamil. By blood pressure is naturally low (about 100/60 and my pulse is in the high 60’s). My blood pressure and pulse has dropped but not drastically. I don’t know if I should continue on with the Verapamil. Any advice would be much appreciated. Thanks
I don’t know how much I can help, but I just wanted to tell you that I’m taking verapamil right now also. I’ve been on it for 3 weeks. After about a week of taking it, I noticed improvement in how I felt. The only problem I’ve had with it is the headache it has given me; it has made my head feel weird. It also hasn’t completely gotten rid of my dizziness, I still feel a bit dizzy. I am also taking 120mg just like you. My advice to you would be to take it for 3 weeks and see if you have any improvement, if not it may not be the drug for you. I also had success with nortriptyline, but because of the fatigue it gave me I got off of it. The only side effect I’ve had is the head pain, but you may be feeling lightheadedness because it lowers your blood pressure. But good luck man! I hope you start feeling better. I’m sorry you’ve had to go through this.
Hi,
thanks for the input. I decided today not to take my 120mg dose of Verapamil. With each successive day I felt more ill and extremely dizzy and lightheaded. I was getting severe ankle and foot swelling. My pulse was also erratic on it - sometimes it was bounding in the high 80’s, then it dropped below 60 at other times. My head felt “weird” on it and I still feel really rocky and off. I don’t know if discontinuing the verapamil was the right choice - it is a tough decision to make because there is always the chance that it may have worked in the long run. I sure hope that I return to the state that I was in before the Verapamil trial . I wasn’t great but considerably better than I am now. - Lisa
Hi Lisa,
If you dont mind me saying , you sound like you have meniers, the fullness in the ears ect: (I’m not a DR)
Having said that some meniers people also have comorbid migraine/mav
and us maver’s seem to have every symptom under the sun…
Verapamil was good for reducing my mav symptoms , I was up to 240mg for a long while,( I have very HIGH BP) unfortunately it caused me Chronic Asthma, so I had to change to another BP med.
Verapamil is known for being “average” for lowering BP, in comparison to other BP meds.
In other words you can take verap to higher doses, than you could with other BP meds, without too many probs.
I have a BP monitor on hand, to keep an eye on my BP when switching BP meds.
When it comes to BP meds, I’d always check with my Dr about going “on and off of these meds”, as us Migrainuers are a very different kettle of fish , to other people,
any change in our brains especially quick changes, can really do us in.
Speaking from experiance here, I put myself in hospital unable to walk or talk, via stopping BP meds too fast.
I wish you all the best with your search for good health.
There are many different BP meds you could try.
this is what scares me about all that I’m reading about MaV because my blood pressure is usually 90/60 and most of the meds lower your blood pressure - i like you would be afraid of getting sicker. Even when my ENT gave me a diureti that happened i felt so sick. felt like i was gong to pass out and it didn’t work for anything.
i think i have menieres though - don’t know trying to find out.
good luck with your quest for help. I’m so sick of being sick and not being able to drive and stuff right now.
Hi everyone,
I have had a few more tries at medications. After a trip to urgent care a physician suggeted Stemetil which would “readily control all of my symptoms”. After a few doses I just felt awful on it . Again my blood pressure and puse dropped very low and I felt so lightheaded that I could not even walk straight. I am now taking 0.5mg klonopin twice a day and I must say that it has made me feel almost normal. At least I can function at work which is a top priority for me. I worry that my symptoms will get worse and I won’t be able to keep my job. I am not thrilled about taking klonopin but at this point I need to be able to function. I have a full battery of vestibular testing next Tuesday so hopefully I will get some clarification about what is going on with me - LisaM
