Hi everyone ,
just a note to think about .
a person from the mal de debarquement site, (who has mav) has managed to go up to 300mg a day of verapamil and has not had any migrianes since, her rocking (vertigo)has gone completly .
she admitted it wasnt easy but she is glad she stuck with it, and toughed it out.
she is only on verapamil nothing eles,
I’m suprised she was able to do this as she has naturaly low blood pressure.
so it’s working for her , let’s hope this is some food for thought.
if anyone is thinking of trying it, it would have to be done very slowly as I tried to do it too fast and couldnt handle the side effects.
she has said that the side effect do go away, she feels very normal again.
so I"m thinking after christmas of trying again.
kind regards Jen
Jenny,
That is such encouraging news! Did she say what her side affects were? Would you mind sharing what your side affects were with Verapamil?? In the one week that i was on Verapamil seemed liked i began to feel some generalized dizzyness and a few small spins while getting out of bed…or bending down to pick something up…kind of like BPPV.
I still plan to get back on this medication a week from this Friday.
Joe
Jen,
thanks for that news. Do you happen to know if, besides low BP, she was also bradycardic before the verapamil? My doc doesn’t want to use any of the CCBs or BBs because my resting heart rate is around 50.
Thanks,
Julie
Hi Joe and Julie,
Julie I’ll ask her and get back to you ,
this is what she wrote,
Well since my experiment on going off Verapamil proved to me that it was helping the migraines, I toughed it out and increased the dose to 300mg a day that Dr Brodie wanted me to do. The first couple days I had the usual bad headache, needle like pains in my head but now that is gone and so is the rocking and body tremors. I know its probably too early to tell if this is true remission but I feel about 99.9% back to normal. Only last night and the night before when I went to bed I barely felt movement for less than 5 minutes and that was after a full day of working/shopping and driving AND a low pressure system coming thru. For me I think getting off the benzos and get rid of the migraines was key. Both Dr Lustig UCSF and Dr Brodie UC Davis told me that if I got rid of the migraine the same thing would happen to the rocking and dizziness. I guess I should have listened sooner, but it was so hard to get off the benzos! But worth it 100%. I will keep you guys posted on my progress, but for now it’s Merry Christmas to me and hopefully for everyone else too.
Guy’s I think the key here is useing the Normal release tabs first , then we can slowly go up 20mg per week or so < I tried to do it too quickly and that’s why I suffered so many side ef
warm regards jen
Hey joe,
en.wikipedia.org/wiki/Angular_gyrus
no wonder when our nerons are going crazy we feel so many wierd symptoms.
Ive even felt detached feelings at times during Aura
Hi Julie,
she said this
Hi Jen, what is bradycardiac? If that is fast heart rate, my was about 80 to 90bpm
before the Verap. Now it runs in the 60’s and 70s. Intially my BP went down to about 89/59 but then came up to the 90’s over 60’s. And as of recent even with the increase in V is running about 110/67. Thats probably because of me taking a decongestant and aleve which both raise BP. Hope that answers your questions.
jen
thanks Jen, that does answer my question. Her heart rate dropped considerably. Mine runs typically around 50 - i don’t want it going any lower. My BP is also low, but i don’t worry as much about that.
Thanks Jen, for asking.
Julie
Sorry to hear that Julie, isnt that dangerous?
and how do they make it higher, would it be by using an oposite drug to verapamil?
jen
Jen…i think i may have misunderstood you?? I thought you said you were on Verapamil but for whatever reason you decided to go off it…i guess because of side affects?? But now your back on it again? I’m i following you correctly?
Joe
Jen,
when i was active, I had fitness-induced bradycardia, down around 45 (I was a ballet dancer - can you imagine a dizzy ballet dancer?) Now i think i have bedridden-induced bradycardia. Old people develop slow heart rates as they start getting sedentery. With my treatment, i’ve started getting up and around more, although no exercise yet - that really gets the swinging and swaying going. The most i do is go up and down the stairs a few times a day.
But If i were to take a drug which would lower my heart rate any more, i could start to have symptoms - i guess my heart could conceivably even stop - wouldn’t want that! 
Take care,
Julie
— Begin quote from “joseph0952”
Jen…i think i may have misunderstood you?? I thought you said you were on Verapamil but for whatever reason you decided to go off it…i guess because of side affects?? But now your back on it again? I’m i following you correctly?
Joe
— End quote
Yes Joe , I’m still on 240mg verapamil,
but I stopped taking larger doses, I think I may have tried to up it to fast,
I tried going up by 90mg , I think if I started upping the dose at a slower rate then I’d be fine.
I wanted to get up to around the 300mg
I’m so sorry Julie that sucks.
I remember when I was younger even up to my early 30’s I was always a tiny person, some people would have said too tiny, I ate like a horse and didnt put wieght on,
one day I felt faint and saw a doc and he said had low blood pressure very low.
but as Ive got older and gained a ittle wieght My blood pressure is stable.
I’m a singer and I know how bad it is to have to give up something you love due to this stupid desease.
Ive been undiagnosed for 13 years.
I’m excited to see what the right meds will bring.
It gets a little depressing hearing so many say they havent found the right med yet.
but I suppose those of us who get some remission , just go off and live our lives
and dont keep searching forums for answers.
I’d love to hear some more success story’s.
I hope you get some relief soon, Julie.
sending a preyer youre way now.
warm regards jen
Oh Jen,
that was a very sweet message. Yes, this illness has robbed us of so much, hasn’t it. I’ve had some relief with Zoloft, but i’m unable to get my dose up adequately. My doc has decided to add Neurontin, at my strong suggestion - wish me luck with that. In addition, he has given me Klonopin to help me be more functional. I worry about addictiveness, but i also worry about how to cope with the rest of my life, so i may use it at least occasionally.
I’ve only been treating this thing for a few months, so i’m nowhere near giving up - i’ll try all 100 meds you listed in your post a while ago (thanks, that was a great post).
All the best to a fellow MAV/artist
Julie
Julie…Robbed is a good way to describe this dizzy mess. I work part-time because i cannot do full-time. Every now and then someone at work will ask me…“why don’t i apply for full-time”? Seems like i have to tell them over and over again…but not many people get it or there not listening to me. Really frustrating!
Joe
Joe,
For some reason, this illness feels embarassing to me. I really HATE to tell people that I’m dizzy. For sure, it’s impossible that they could conceive of how bad this “dizziness” is unless, maybe, if they were to read all the stories on this board. Even my husband doesn’t really get it. And I’m even embarassed to tell him all of my symptoms - they are just so weird. Until my diagnosis i just felt like a freak.
Luckily, i run a business from home, which mostly runs itself. And the small improvements I’ve had feel so good, that I’m much more functional than even a few months ago.
After I posted, I thought, yes, “robbed” is certainly the right word, but “upside-down” also applies. My life is almost opposite of what it used to be. I was extremely active (ballet dancer), independent, competent, efficient, took care of everything around the house, etc, etc, etc. For the last 18 months or so, I have been almost bedridden, barely capable of taking care of myself, let alone the house, and dependent on my husband. He’s the greatest, but it’s really been on a strain on our relationship. I give as much as I can to him, but it is so limited, and he really misses what we used to have.
Very sad, I can only hope for more improvements, and if not, I hope to continue to become more accepting and adapting of the cards I’ve been dealt.
All the best,
Julie
Hi Julie,
I am very sorry for what you have been going thru…it is a very disruptive illness! I have been dealing with this dizzy condition for 15 year. On the positive side i have made some small improvements but i still am far from normal. When i really look deep at this condition i believe the most current diagnosis is appropriate (Migraine Equivalent) because i feel constant Tension 24/7 in my head with Pultizing and throbbing which brongs on Motion…just like a headache. Most of the time there is very little pain…mostly Motion but i do get small to mid-size headaches once or twice a month. If i skip a meal or stress out…or even eat or drink the wrong kinds of foods like too much caffeeine or even chocolate the condition worsens. I have to try and get about 8 hours sleep and go to bed about the same time every day…if not…then i have setbacks. Feel so fragile. I have lost a few friends over the years because of this condition. There are some so called friends who don’t want to be bothered with folks with a chronic illness. I have learned alot about people regarding this dizzy condition. One thing i don’t do anymore is talk about it too much. I really try to stay on a good note as much as possible and keep most of my thoughts on this dizzy stuff to myself. Mostly…it deponds on the person…some people are more caring than others.
The only medication that gives me some relief is Xanex (anti-anxiety medication). I hope to restart Verapamil a week from today. One good thing about this condition is that you do make improvements but for many of us it’s at a snail’s pace.
Take Care,
Joe
Julie ,
many of the mal de Debarquement group have found klonopin to work really well ,some peolpe believe mal de is a migraine varient as well, they say it helps them stay sane, It is addictive , but some people say its worth it, as they couldn’t function without it.
That girl I was talking to you about.
She was on it for a fare while and it was hard coming off it but she did IT.
I suppose that’s the hard thing about this, its so frustrating to go on some thing and then have to taper down to get off the rotten thing.
But I say if it’s going to save us all from the loony bin then its worth it.
I understand completely how embarrassing this invisible illness is.
My 25-year-old nephew asked my sister what it was,
And she said oh just a migraine without the pain.
Well that’s sounds pretty neat when you think about it doesn’t it.
A headache free migraine.
Which confused him even more.
I had a (Quick hair trim) yesterday, as I cant stand being under the fluro’s with my head flicked back for any period of time,
She asked me, why I’m retired at such a young age and I tried to explain what I had to her; it blew me away she had never even heard of aura before.
This is how little the population understands migraine.
I was dumb founded.
Her face was screwed up with disbelief,
when I explained what happens to people who have migraine-associated vertigo.
as far as my hubbys go’s ,
I found information over the net that explains some of what happens to me,
literally sat my (immediate) family down and made them read it.
They now get it. Thank god!
like you, I also have a fantastic hubby who dose a lot for me and boy doesn’t it make us feel guilty and stupid.
But if our hubby’s can’t be there for us who can.
He see’s you every day and understands better than anyone
And he loves you just the same.
I hope you have a calmer Christmas Julie,
Warm regards jen.
For what it’s worth, I started on Verapamil 120 SR in August. It did not change my blood pressure or pulse rate. At rest, my average is 117/71 with a pulse that ranges from 47 - 52 bpm. It’s been that way for quite a while.
To provide added context, I do a lot of heavy aerobic exercise, and am a former long distance swimmer. I also spent years in boxing gyms. I no longer swim or box. I use the stationary bike because it’s safe, and easy to do during all seasons. By New Year’s Eve, I will have done about 6,000 miles for the year on the stationary bike.
When I switched to Verapamil 180 ER/SR in November, there was no change in blood pressure or bpm, either. A bit strange, but I’m not complaining.
I can’t explain why this is, but one thing I did notice was that my workouts actually are a little bit easier (LOL). I can increase the pace and volume of the workouts a bit on the Verapamil. Unfair advantage. :lol:
In terms of how effective Verapamil has been for this ailment, I have noticed more and more improvement over the last few weeks…about 5-6 weeks after starting up on Verapamil 180 SR/ER. It was up and down before then when I was using 120 SR, especially in September and October, when I was using Ambien as a sleep medicine. I’m going to give this some more time to see how it pans out. Definitely not over the top yet, but moving at the right trajectory.
Jen - that’s a cute story - “a migraine without a headache” not a bad deal, hu? (If they only knew)
I haven’t had a hair cut in over a year! I tie it in a pony tail on the top of my head and just keep cutting the end off. I look like Pebbles Flintstone (not sure if you know who that is).
MSDXD - thanks for that great info. I’ll have my neurontin anyday now, and I’m going to give it a try. My next plan (it’s not that I’m negative, it’s just that my personality style is to always plan ahead - I was the oldest daughter of 11 kids, so i’m naturally on top of things - think this could have anything to do with developing such a severe migraine state?) Anyway, as I was saying, if the Neurontin doesn’t do anything, i was going to try Top - but after hearing what you said, I may push him for verapamil. Like I said, my doc was against verapamil, but when I told him Tim Hain in Chicago uses it for 20% of his practice, he was impressed.
Thanks again, everybody for all the great input - this forum has been such a great source of support.
Julie
Jen,
One more question - why did your friend decide to go off Klonopin?
Julie