Hi Jul &Joe
the reason I sent this is,
this girl has been on verapamil for longer than Myself, and she has only just stopped her migraine on this dose and its only happend recently, just go’s to show how long it can take.
Jul, how do they raise your blood pressure is there meds for this.
that heart rate is dangerously low, isnt it.
jen
Jen,
My BP is low normal, so i’m not worried about that. But if yours is dangerously low, you might want to ask your doc about it.
I’ve always been bradycardic but it used to be fitnessed induced - i was a ballet dancer. Now I think the bradycardia is because I spent over a year and a half practically bedridden - old people get that way - their BP and heart rates go down. That’s why I was hoping it would go up as I’ve become more active, but so far, it’s just holding, or even decreasing a little - strange.
I’m not having any symptoms so I’m really not worried about it, but i will bring it up with my GP next time I see her.
Jul
Jenny,
Do you have the web address of the mal de d’embarquement site?
mddsfoundation.org/
all you have to do to join is tell them about your rocking symptoms, and that you are looking for help with this regard.
warm regards jen.
Hi Jenny and Everyone.
Well it’s getting close to 6 weeks and i have not noticed Verapamil as very helpful. I still have to depend on the one tab of Xanex per day. Without that…it’s difficult to manage a day at work…or just a regular day. On the weekends i try to take only 1/2 tab of Xanex…last saturday i succeeded…barely…then Sunday and to go back to one tab of Xanex. I am feeling a bit discouraged. In two weeks if i don’t find much improvement…my doctor wants to take me off Verapamil. Not sure where i go from here…
Joe
Joe I’m so sorry it hasnt worked for you.
I’m on the 320mg now and had some good days and some bad days yesterday I had 2 migraines so it’s not doing all it should for me iether.
I have noticed it’s slowed the rocking down though.
all the best Joe.
Hi Jenny,
Seems at times the rocking is less…but i still have to depend on one tab of Xanex. If not…things can become uncomfortable. When you say you have had a couple of Migraines…are you talking about Classic Painful Migraine Headaches or the Silent type…with lots of tension and pressure + rocking? I don’t believe i have ever had a classic migraifne…but i do get an uncomfortable headache maybe once a month…
I have 2 more weeks to be on Verapamil…maybe a miracle will happen???
Hope you begin to have more good days. Keep us all posted.
Joe
No Joe, just silent migraine with aura, dizzy ect.
jen
Jenny…i want to reiterate my thoughts on Verapamil. I think the rocking motion and tension is a little less…but my big issue is that i have to continue to taking one tab of Xanex daily (anti-anxiety med)…to keep me feeling less stationary, less tension inside my head, less rocking, etc. So i was reflecting about verapamil the last couple of days since i last posted and i think it has helped some. What i was hoping for by now is that i would not have to rely on the one tab of xanex. But unfortunately…i still do. So i don’t know if that is considered progress or not? Without the Verapamil i think there is a little more motion that i have to contend with.
I will keep monitoring…Hope this has not confused you. 
Joe
what dose did you get up to Joe?
jen
240mg. The doc has not said anything about increasing it. Could it be harmful to increase this type of medication? I take one tab in the morning and one in the evening.
Joe
Joe, just have to ask… Did you have the rocking before the Xanax? I suppose you know, but they’re quite addictive (well, to be correct you grow dependant and not necessarily addicted), and the rocking could just as well be withdrawal when you don’t take it. Just wanted to make sure you don’t miss that fact, because I doubt any med except other benzos will help against that (the only way would be to taper slowly, probably with diazepam).
Edit: Don’t get me wrong with this post, though. If you need it, you need it! In fact, my doc is considering a similar drug for me, despite we both know that I’ll likely become dependant. I don’t see anything wrong with that, as long as you’ve tried “all” the alternatives first, and it looks to me like you have.
Tranquility,
Glad you asked that question. Yes…i had the rocking before the Xanex. To make a long story short…in 1989 i began to have an occasional vertigo episode…waking up from sleep at night in the wee hours of the morning. From 1989-1991 i would get about 2 vertigo epiosdes per year. Evertime i would experience vertigo i would become extremely sick and vomit. I mean…it was a horrible nightmare ordeal and would take 2-3 takes to get back to normal. Doctors thought i had an ear infection/virus. In 6/92 i experienced another severe vertigo episode (waking me up from sleep) and had to literally crawl to the bathroom to vomit. I then proceeded to walk slowly to the couch and sit and not move my head much…for fear of more vertigo. Well then i began to notice a rocking like motion and much of the motion was felt inside my head. So that is the basic beginning of my condition. Doctors first diagnosed me with Panic Disorder and that is when i began taking Xanex. I have come along way with that prescription durg. What use to require 7 xanex pills a day (even stronger strength than now)…the last 4-5 years i only take one tab of Xanex and the lowest strength available which is very low. It was tuff gradually lessesning the Xanex intake…but i did it. Xanex has been my saving grace…without i don’t know where my life would be at this point because anti-depressants have never worked for me.
Joe
ps. when i look back at my condition it truly was very similar to Benign Positional Vertigo. Initialy the vertigo attacks always erupted while sleeping in bed. Maybe my condition evolved from BPPV to MAV. I had the Epley manuever and it didnot help.
Joe,
I always find it amazing when i hear you tell of cutting your Xanax use so dramatically - that’s quite an achievement. You must be getting better and it sounds like you are using benzo’s in an intelligent way.
Julie
Hi Julie…from the very beginning of this nightmare…1992… till about 1999…i truly needed 7 tabs of Xanex to get thru the day and hold the stressful job that i had at the time. In 1999 i took a severance pkg…left San Francisco and moved in with a friend in the Los Angeles area. I rested for nearly 2 years…trying to better my health. At that time i began to feel a little better and started experimenting with reducing the Xanex. Since i was not working and mostly resting… the 7 tabs of Xanex was not needed anymore. But at the same time…it was not easy reducing the medication. I had to go about cutting back the medication slowly…1/2 tab at a time. So i have currently been on One tab for about 6-7 years. I try and lower it to 1/2 tab and sometimes i can get thru the day but still not very comfortable. So i will continue with the one tab. It’s a very low dosage.
Again…i have had this dizzy condition for nearly 16 years. You do get better…but it’s at a snails pace…atleast for me. You will get better too. I am assuming you have not been dealing with your dizzy condition for that long??
Joe
Joe,
I personally think they’re all inter-related. I had a virus in 1975 that destroyed the hearing/vestibular function in my left ear. Prompt steroids helped give me most of my hearing back, but I had subtle motion intolerance for years. Then, in 1987 I had a bad bout of BPPV and the ENG showed the vestibular weakness in my left ear. My motion intolerance: bursts of vertigo, constant rocking after sailing, frequently feeling lightheaded, episodes that felt like panic, continued. I didn’t realize it was all a variant of vertigo. Then in 2003, I swung my head in a yoga class and was struck down by severe BPPV. I had seen an otologist a year earlier for the vague stuff, and he did the rotational chair, etc, and confirmed the uncompensated left ear vestibular loss. I tried vestibular rehab, but it didn’t help.
With the bad BPPV in 2003, I was Epleyed multiple times, with little benefit. I decided on my own, I was going to bang that nasty otolith right back out of the semi circular canal–to the point I put myself into a severe, unremitting vertigo attack. I paged the otologist, and he started me on klonopin.
He pushed the dose to 3 mg/day. He also told me there was nothing else to do, and just keep the prescription refilled.
I got a second opinion from an otologist who said that I had all the other problems: nerve damage due to virus, episodes of BPPV (much more common in previously injured ears), mal de disembarkment–but the reason I didn’t get better was that I had MAV.
I’m on some other meds that don’t allow me to take verapamil, so we stayed with klonopin. We cut it down to 2 mg/day. But know I’m in a holding pattern with him. (He tells me to accept my limitations, and follow the migraine diet.)
So, I saw my ENT who agreed to take over prescribing, and we’ve agreed to a slow taper of klonopin to the point that symptoms really bother me. I haven’t started it yet. He told me I may need more during flares. We agreed to cut back by .25 at bedtime to start.
Through it all, I’m still working–but part time. I find that tennis helps me. One helpful advice from the otologist is that if I’m having episodes, to do some GENTLE brandt-daroff maneuvers before sleep to shake up the otoliths. It helps.
So, I think we can have multiple reasons for our symptoms, and one diagnosis doesn’t preclude another.
I like to hear that you can back off the xanax. I hope I can back off the klonopin, although I think I’ll need some forever. (I lived over 30 years with the head rushes, bursts of vertigo (while sitting still) and the constant rocking after sailing–this is part of who I am.)
Kira
Joe,
You are right, i’ve only had near-disabling dizziness for 5-6 years and truly disabling dizziness for about 16 months - but who’s counting
But…i realized after my diagnosis with MAV that this has been coming on for at least 10 years - around early perimenopause “coincident” with a number of severe viral attacks. I was diagnosed with post viral dizziness and sent on my way with a little Valium and the hopes that it would go away. It didn’t - but it wasn’t wrecking my life. I was still driving, dancing, going out, working, just annoyed by this little constant rocking. But, they told me there was nothing to be done, so I did nothing.
Then I had my big crash. BAD viral attack with severe dizziness and fatigue which has never left me. Again I was told, post-viral, nothing to be done. One of the things that surprises and angers me now is that nobody ever thought then to do any testing or vestibular treatment. And the docs in my area are supposed to be (and think they are) much better than average.
I got desparate with the medical system and turned to a homeopath. It worked great - i had a couple of years of great energy and was symptom-free, until she overdosed me. It was hell on earth for almost a year. I wasn’t even able to leave the house to seek treatment and when i did and told them my story, they looked at me cross-eyed.
Anyway, I agree with you and Kira. This is who I am. I’m thrilled with the improvement I’ve had with treatment, but I’m still housebound and suffer quite a bit by the end of the day. I’m game for trialing more drugs if i need to (and I expect that I will). And I’m game for adding daily benzo at a low dose if I need to (and I expect that I will).
This is the cross that we bare, isn’t it? I’m doing it the best I can. And the support of this forum sure does help.
All the best,
Julie
Hi Kira,
Are you able to do most things like go to a movie, concert or work? Most of the time i can do these things (i can only work part-time)…years ago when things were very bad…sometimes i had to leave movie theates and step outside of a resteraunt for a few minutes. I would feel like the room in the movie theatre was going to spin. I still have some difficulty with Crowds. I understand of all the anxiety med’s…Klonopin is probably the best. I am fearful of changing over to Klonopin because i have had alot of help from Xanex.
Joe
Julie…so your dizzy condition most likely began because of a Virus?? That is too bad that you were overdosed with homopathic medicine…and you were doing so well! I recall you saying that you feel embarrased about your condition…don’t be. Pick and choose the people who you think will be compassionate. The ones that you don’t believe will get it…just tell them in a simple way…that you suffer from dizzyness…don’t need to go into detail. Either we are suffering from a Migraine like condition, or an Inner-ear condition, or could it be some kind of Emotional issues or lacking Serotonin in the brain??? Who knows for sure…but i am going to go along with my last diagnosis that i received which is “Migraine Equivalent”.
Lets just keep up the hope…and try to enjoy each day the best that we can. If you have a bad couple of days…remind yourself that it will improve again.
Joe
Joe,
Now I can work–but part time only, about 3 days/week, and I have to avoid the part of my job that involved sleep deprivation (night call). Unfortunately, as low person on the totem pole, I got the windowless office. I do know that I have to pace myself, and I’ll frequently sit down as prolonged standing in a windowless, fluorescent, small room can make me feel dizzy and lightheaded.
When things were bad: 2003, I could only do administrative work, and in little doses, and would be so nauseated that it was rough. Gradually I added back some clinical work.
Again, in 2003 I couldn’t shop, go to my childrens’ concerts, see a movie. Now, I’m careful to get an aisle seat and toward the back. There was one horrible event, at a university symphony performance, in a hot, crowded room, up in the front and the violinists’ bows set me off–I had to do the “walk of shame” out of there. If feels like panic, but it’s vertigo–and they get all mixed up.
I’ll still avoid plays in small theaters. Recently we got symphony tickets, and I made sure they’re in the balcony, on the aisle, near an exit row. Sad, huh?
I used to have a lovely older horse, and he died last month, and I tried to use him as a therapy horse, but riding in circles set me off. My daughter still rode him, but I just brushed him, hand walked him and hung out with him.
This dizziness has limited me: I avoided all travel until last year, and still won’t visit my family cross country. (My younger daughter who has MAV and is on nortriptyline is currently in Germany, and the anxiety about what the trip will do to her is killing me: she took her meds, and some as needed ativan, given to her by the otologist, and we’ll see what shape she’s in on return. I was against the trip, but she was adamant.)
So, Joe, my limitations are less, but still there. They’ve not been good for my social life (what social life??), but I can still work. Ironically, I work in a medical field and my colleagues, in general, are not supportive. One, who has bad migraines and another who had a stroke, are–but in general, it’s a hidden disability.
My husband has had a bit of a hard time with it: he doesn’t really understand what my limitations are, and will assume they’re both greater (she can’t do THAT) or less (why aren’t you cooking?) then they are. Any chronic problem takes its toll. I just resent the constant caution, and my instinctive reaction to play it safe, and avoid anything that I’m concerned will trigger it.
Kira