Julie,
Jen’s list is posted on a google group for migraine: it’s a list created by a physician and he updates it monthy.
I completely agree with you about the shame that goes along with the disability. I try not to talk about the vertigo to anyone, and hate to admit when it limits me. I personally found the eMedicine article very helpful in explaining to family and co-workers what this condition is.
Personally, although I’ve had vertigo issues for many years after an ear virus, it really kicked into a disabling condition after a rough bout of BPPV in 2003: I went from completely functional, to unable to shop, etc. At that time, my work was entirely administrative, but I struggled to get through it. I’ve gotten better, but it lingers in the background. The neuro-otologist I saw put me on klonopin, and just told me not to come back in, but keep taking it for the rest of my life. It helps a lot, but it’s not a drug I like or want to be on. I got a second opinion, which was super-imposed MAV, but the klonopin remains the mainstay of my treatment. I have lowered the dose.
So, I’m functional on a drug that is addictive. Rough choice, but I chose to be able to function. I’m still trying to figure out the lowest possible dose I can get away with.
Kira
Kira,
Unless it’s inappropriate, can you give me the name of the Google group?
I’ve been struggling with the Klonopin decision. I got a lot of mileage out of Zoloft, has me up and functioning at home, but i’m still housebound, and pretty miserable by mid to end of the day. I have recently been walking out to the mailbox, for the first time in 16 months, plus cooking, doing laundry, etc. Things that used to feel like chores now now feel wonderful to be able to do. But, the arousal from the Zoloft is getting to be too much and I’m losing sleep. I’m going to hold my Zoloft dose at a meer 37.5 mg and add Neurontin. My neurologist has also given me Klonopin, which he strongly suggests I take .25 bid, but i’m resistant. I know once I get into daily benzo dosing, i’ll be doing it the rest of my life and worrying about tolerance the entire time.
Wish me luck with the neurontin, and Happy New Year to you, Kira,
Julie
Julie,
It’s not all inappropriate: it’s a google support group for migraine. My younger daughter has a history of severe migraine associated vertigo: she was hospitalzed for an intractable bout a few years ago. Her vertigo stumped the pediatric neurologists, but our ENT figured it out. She went from a high functioning person, to a pale, dizzy person literally overnight–she’d had some bouts of it, but the flu tipped her into a non-stop episode. So, looking for help–and dragging her to world experts who were of little use–we finally fell back on our ENT’s help and I found a good otologist to validate her issue–I stumbled onto the google group. Like all of these groups, you tend to hang out on them when you need the help, and drift away when things get better. She has stabilized on notriptyline. She’s now doing well at college, and has learned how to manage the dizzy spells: lots of fluid and rapid motrin with a flare. So, long story, but it’s how I found the group. A physician, Sandy, posts the prophylaxis list monthly. Here’s the link to December
groups.google.com/group/alt.supp … e01346564#
When she became ill, I didn’t know I had MAV, and I couldn’t see the connection between what we both had–different presentations.
The google group is open to all.
I wouldn’t have chosen the klonopin, but for the first two years of my really bad symptoms, it was all that was offered by the neuro-otologist. My current otologist suggested zoloft a couple of years ago, and I didn’t give it a real chance. Sometimes I think about trying it again, but I"m sick of medications. I take another medication for sinuses that doesn’t allow me to try verapamil or the tricyclics.
I keep trying to wean down on the klonopin.
It allows me to work, and function, and it’s hard to want to “rock the boat”.
I recently had a bad cold/sinus infection/hormonal stuff–and was really dizzy again. It gets scary because you know how bad it can get.
Kira
Kira,
Thanks for the group - i’ll look into it. I find the different forums useful for different issues.
This is a nightmare of an illness and I always feel sad when I hear of a young person who is suffering with it - they have their entire lives ahead of them. My entire family suffers with varying degrees of dizziness andr urainesgot diagnos put the two of them together until I got diagnosed.
There is a lot of fear associated with this illness. On a daily basis - how bad will it get? Looking to the future - what does it hold for me? Will I ever be able to take care of myself? My husband is 12 years older than I am, etc, etc, etc. So if you have a good thing going, it would be hard to make the decision to rock the boat. I’m new to all this so I’m not sick of trying different meds yet. If nothing else works, I’ve go with the Klonopin.
Thanks again for the google group.
Julie
Hi Julie the only other group I read from on a regular basis is
search.healthcentral.com/query?q … e&x=10&y=9
thanks for these sites, jen
The migraine connection site is moderated my Teri Robert, she is a lay person, an advocate for migraine disease, has written a book about Living Well with Migraine and has another web site. She’s very active with the American Headache Society, and is a lovely person–she’s emailed and called me personally.
Her personal site is
helpforheadaches.com/
She posts on the google site, which is how I “met” her.
Kira
Hi Joe it’s jen , how is the verapamil going feeling ok?
just to tell you that the girl that whent into remssion on verapamil, infact her doc said she can start taking 180 mgs now and she is stable and still in remission,
hope your surviving those temporary side effect joe.
good luck jen,
Jen…so far no help. The side affects seem to be sub-siding. Tomorrow (Saturday)…i will increase it by 1/2 pill. At what dosage did you find some improvement? I am currently taking 120mg per day…starting tomorrow i will increase it so the total will be up to 180mg. After one more week i will increase again and will be at 240mg.
Joe
Hi Joe, sorry to hear your not feeling the best,
well when I first started taking the verapamil it took about two weeks to show anything at all.
I felt an overall sense of calmness during that time which helped me have a few less migraines.
verapamil is like any drug Joe , Dr’s say it can take up to 10 weeks or more before patients see the benefits.
the girl I’ve been speaking to said it did take a while for her to get any benefit from verapamil.
and as I said she has now stable and in remission from her mav at only 180mg a day.
unfortunatly for me it’s going to take a higher dose than 240mg to work by the looks of things,
I’m going to wait for around 4 months to see if this elavil (endep) makes a difference first, because I dont want to confuse which drug helps me, but for now I know i had less rocking from the verapamil than the endep(elavil). considering the elavil is supposed to be a migriane preventative, I’m surprised it’s giving me more symptoms. I did find a article the other day that said they believe some antideressants can cause contriction of vessels so maybe this elavil is making things worse.???
I have no Idea.
Dont forget Joe , verapamil is just as dangerous to go off, so If you dont find its working make usre you consult your doc before stopping it. you have to taper off it very slowly.ok
take care Joe.
I’m thinking of you.
jen
Hi all, just trying to remember who it was that siad they were diagnosed by dr H,
or what was his name in Sydney.he is a neurologist???
just looking for his name and phone number if possible.
'thanks guys sorry my memory is shot.
Jen…So if i understood you right… your saying that after 2 weeks of Verapamil you felt a calmness? So you are only on Elavil right now? I’m getting confused…i thought you were on verapamil now?? Thanks for telling me to taper off verapamil slowly just in case it does not work. I will definitely consult my doctor.I tried Elavil but it did not work for me…only helped very slightly with the tightness inside my head. I got as high as 100mg.
Thanks for thinking of me…i am doing the same for you.
Joe
Hi Joe, No thats not correct, first of all I have been on verapamil 240mg for many months before I ever had a diagnosis of mav, I have to stay on verapamil due to a heart condition. svt
so I cant go off It unless I had an operation to fix my heart. but that dosnt worry me as the verapamil is helping a (little)
then they tried me on periacton, which I had a reaction to and couldnt continue,
(some antihistamines make me and other family members in my family quite I’ll.)
2nd .
they are tried elavil(endep) into the mix, to try an rid me of migriane.
I spoke to my GP who arranged the elavil late this afternoon and she said after 2 months it should have shown some improvment, well it hasnt so said get off it.
I stuck with it for 2 months Joe because I wanted to give the drug a fair go.
I dont want to be one of those patiants who dont try to give meds time to work.
It wasnt easy iether as it made my symptoms much worse.
I was pretty stressed out this avo.
so for now I’m starting to taper off it as of tonight.
this should all work out well as my neuro gets back from sick leave by the 21 jan,I have an appiontment with him that day. so he might be able to give more info on where to go next.
upping the verapamil or trying another stupid drug.
for now I am starting to doubt my mav diagnosis, because why would the elavil have made things worse instead of better?
so depressed at the moment to tell the truth.
I dont normaly let myself get this down, I dont even have my job anymore to keep me distracted,
so goodluck with the verapamil Joe. it’s all trial and error.
maybe what didnt work for, me may help you .
hugs joe.
cranky jen
Jen…thanks for explaining…now i understand. Did you know that i gave Elavil One Year and increased it gradually till i reached 100mg. Began having Side affects around the 50mg but i stuck with it. Unfortunately it didnot work out. Sorry about your heart condition…i hope Verapamil will be helpful in that regard. You are right…2 months should be plenty when experiencing a prescription drug. I guess after having this dizzy condition for 15 years i was willing to give Elavil one year. Actually, in some ways the Elavil made me worse because it sort of increased a foggy sensation.
You are having doubts about Mav? But many of your descriptions of your condition sure sound like it??? One of the symptoms that we have is the rocking motion sensaton so either we have Mal de debarquement syndrome, an inner-ear condition or the MAV…Migraine related condition. I don’t know what else it could be?? Please…try not to let yourself get to down. Keep busy…stay in touch with friends and or family. I use to work full-time making very good money…now i work part-time and make 3 times less than wha i use to make. But you must move on and keep your chin up and hold on to your hopes.
Hang in there…and keep us posted.
Joe
Hey Joe , 4 days ago I stopped taking the elavil, a couple of days later I stoped rocking , and havent had a migriane since this Is very unusaul for me not to have one, I’ve been rocking for 3 years now with only 2 months remission, so I’m happy for even a couple of days break from it,I decided to take a chance and Up my verapamil another 30 mg, during this time. so all is good for now, but I’m not jumping up and down about this as I have no Idea if it will come back tommorrow.
I hope your good Joe
hugs jen
Hi Jen,
That is good news…but weren’t you Rocking before you began taking Elavil in the first place? Wasn’t that one of your symptoms of MAV? The Elavil gave me some side affects but it was mostly Urine retension that was bothering me the most…but overall Elavil did not help. The Tension was slightly less but that was all.
I have been on the maximum dose of Verapamil since Saturday…i will give you an update in a couple weeks or so regarding this medication. Sometimes when i am on a new medication…i may start feeling a bit better after a few days or week…i share it with friends/family and then my symptoms come back. So i don’t want to jink anything.
Hope your rocking continues to stop completely.
Joe
Yes Joe I was Rocking befroe the elavil,
jen
Hi Jen,
Been on the Verapamil for 3 weeks now and so far i have not noticed any significant help. Feeling a bit discouraged but i believe a person needs to be on this med for 2 months. I will keep you posted. Hope your doing better.
Joe
Hi Joe sorry I took so long to get back to you , some computer porbs.
what dose are you on Joe so far?
I saw my neurologist this morning Joe and he said I should keep trying to up the dose slowly till I get to 300mg, seeing A GP every week to monitor my BP and pulse rate.
Actualy I told him this was my plan not the other way around.
he agreed, and said he most definatly didnt want to try any anticonvulsants at all as in his opinion
the side effects are worse than what I have now.But thats just Me
that would make sense as he said drugs like topamax or epileptic drugs were only for people that
have chronic vertigo of the spinning type that have no other option.
so far Ive been on this verapamil for around the 6th month mark and havent had any side effects on a general basis, ect for being slightly more tired,
but then it very hot in Queensland Joe ,
it’s summer and for me the heat tuckers me out anyhow.
Ive had less migrane and with that means less rocking, for me less symptoms is a biggie!
I dont think this will be a cure at all joe but it helps me cope a bit better,
as I said it takes at least 10 or more weeks to get results of any kind Joe.
please dont give up the verapamil unless you cant handle the side effects, as down the track things may change.
best wishes Joe.
hugs jen
ANY ONE TRYING VERAPAMIL,
DONT DO AS I JUST DID AND TAKE IBUPROFEN WHILE UPPING YOUR DOSE,
OR ON FIRST STARTING VERAPAMIL,
IT WILL INTERACT AND STRENGTHEN THE DOSE,
VERAPAMIL WILL CASUE SOME SIDE EFFECTS BUT WILL ALWAYS SETTLE AFTER A WEEK OR 2
BUT DURING THIS TIME DONT USE IBUPROFEN.
AFTER ITS SETTLES YOU CAN USE IT
JUST NOT DURING TITRATING.
JEN
— Begin quote from “jennyd”
he agreed, and said he most definatly didnt want to try any anticonvulsants at all as in his opinion
the side effects are worse than what I have now.But thats just Me
that would make sense as he said drugs like topamax or epileptic drugs were only for people that
have chronic vertigo of the spinning type that have no other option.
— End quote
Why is that?
Many of the newer anticonvulsants have very few side effects… far less than the serotonergic drugs.
There are plenty of older anticonvulsants I wouldn’t take because of their side effect profile but many of us are on one or more anticonvulsants with little in the way of side effects. I think your doctor may be generalising a bit much there.
Adam