I went on a trip to Vermont and we had to go through the Adorondaics. The windy, twisting roads, bumping of the car, and maybe the altitude caused severe dizzienss. I guess vertigo. I felt like a drunk person and it lasted the whole rest of the night until I woke up. But ever since this trip I have felt off and dizzy. Not the drunk dizzy but the world bouncing dizziness. Is the common with MAV. I just feel horrible again. My ear stopped humming after 3 months of it but now its back. I feel horrible again, and I just dont know if any of this is MAV. How can one be dizzy for days on end, with humming in there ear. I am so frustrated with my life right now. I fear I will be stuck like this forever. I am also trying to wean myself off of Kolonpin bc I dont want to take all these drugs. I am still taking y Nueronton but it seems to not be helping at the moment. I am already at a very high dosage so i cant increase.
Last summer I began relapsing, gradually started feeling more dizzy and then I suffered vertigo after a long car journey. It lasted a couple of days and then it improved but I kept going dizzier generally until it was like the beginning again and I also had further spinning vertigo. I think it was all part of another big MAV attack. I went on nortriptyline and slowly things have improved again but still have daily issues although not as bad. I do feel car journeys/travel can be a trigger for many people with this x
— Begin quote from “Jem”
Last summer I began relapsing, gradually started feeling more dizzy and then I suffered vertigo after a long car journey. It lasted a couple of days and then it improved but I kept going dizzier generally until it was like the beginning again and I also had further spinning vertigo. I think it was all part of another big MAV attack. I went on nortriptyline and slowly things have improved again but still have daily issues although not as bad. I do feel car journeys/travel can be a trigger for many people with this x
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yes this feels like when it all first started again. its so hard. I have been home now for 2 days and i feel “off” and the humming in my ear is loud and annoying. i hate it so much. last night i felt like i was going to fall bc of a quick wind of vertigo that lasted maybe 5 secs. it is all so scary and it hard for me to swollow that its all migraine related.
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I am also trying to wean myself off of Kolonpin bc I dont want to take all these drugs.
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I know that none of us wants to be dependent on a lot of drugs, and I totally understand the desire to be “natural” and healthy. But something threw our brain chemistry into overdrive in the first place, so the drugs are necessary (my opninion) to get back to normal, at least for now.
Again, my opinion, but if it takes six months to get the drugs to help us get back to what we would call “normal” or close to it, I don’t think it is wise to immediately begin to discontinue their use upon reaching that milestone. It seems to me that allowing ourselves/our bodies a bit of time to readjust to “normal” before beginning to wean off of the drugs that helped us reach that goal is very important.
Perhaps you were a bit quick to begin the process of coming off of the medication, and the windy roads in high altitude took you well over your threshold without the aid of your working dose of preventative(s).
Just a thought.
On your drive through the mountains, did your ears pop from the pressure change? Did you pop your ears yourself? I wonder if maybe it was the pressure change- is this the first time you have done mountain driving since this all started? You should keep your appt with the other drs that you scheduled and mention this during the visit.
— Begin quote from “sarahd”
On your drive through the mountains, did your ears pop from the pressure change? Did you pop your ears yourself? I wonder if maybe it was the pressure change- is this the first time you have done mountain driving since this all started? You should keep your appt with the other drs that you scheduled and mention this during the visit.
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Yes first time going out since these issues. Ears kept popping and unpopping. I told my doctor . He said he would call me in two weeks bc he wants to discuss my case with the other doctors. Could this me fistula? My ear stopped humming after all this but is now back to its hum
I also forgot to mention the horrible sinus pressure and jaw pain. Its not infection bc im on antibiotics. But my sinus hurt the whole time and i know that was due to tbe pressure. I also now have a hard small knot in my jaw line along w lump in back of head. Very small and hard. My other worry is i have buisues all over my legs for no reason. This crap is scaring me to death. I have appt with primary care doctor tomorrow.
The sinus stuff can be migraine. I have read that a lot. I have started to bruise more easily but I think that’s because of the nortriptyline I take. Perhaps this may be caused by your medication. Apparently some meds make the blood vessels burst more easily. Worth checking with your doctor if you are worried though x
— Begin quote from “Jem”
The sinus stuff can be migraine. I have read that a lot. I have started to bruise more easily but I think that’s because of the nortriptyline I take. Perhaps this may be caused by your medication. Apparently some meds make the blood vessels burst more easily. Worth checking with your doctor if you are worried though x
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I see u have had these issues since 2009. Are you still dizzy . Do your meds help you or do you still feel kind of off?
try not to worry because you don’t know what will happen yet. that is great that your dr.- is this the otologist who diagnosed you- wants to discuss your case with other drs. maybe he is considering a fistula but don’t get worked up or worry about it yet. i forget if you said this but did your dizziness just start out of the blue? Did you pop your ears right before it started???
It all started in 2009 but I spent 3.5 years believing I had vestibular neuritis and needed to compensate for the damage. I was told not to take any meds for that and just do some VRT. It was only when I started going worse again last summer that I realised it wasn’t VN and then I found this site and ended up getting diagnosed with Migraine vertigo. I started my first med last September - Nortriptyline - it does seem to have helped and I am better than I was a few months ago. I am getting back to where I was prior to my relapse. Whether nori will help me get even better with more time, I am yet to find out. I can’t imagine being fully normal but hopefully it will prevent further relapses. I don’t think meds are a cure for this but if they can control it most of the time then I guess it’s better than nothing x
— Begin quote from “Jem”
It all started in 2009 but I spent 3.5 years believing I had vestibular neuritis and needed to compensate for the damage. I was told not to take any meds for that and just do some VRT. It was only when I started going worse again last summer that I realised it wasn’t VN and then I found this site and ended up getting diagnosed with Migraine vertigo. I started my first med last September - Nortriptyline - it does seem to have helped and I am better than I was a few months ago. I am getting back to where I was prior to my relapse. Whether nori will help me get even better with more time, I am yet to find out. I can’t imagine being fully normal but hopefully it will prevent further relapses. I don’t think meds are a cure for this but if they can control it most of the time then I guess it’s better than nothing x
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I was wondering if i had that too. I just dont understand how i woke up o.e day and felt like crap and it has not gone away. I felt so good and alive before this all happened. I was so healthy. This whole thi.g sucks so bad and the thought of being like this forever just makes me want to die. I ha e three kids to take care of and i am like a zombie with no life in me anymore
I know it does take a lot of getting used to and I understand exactly how you feel. I think the beginning is the worst so if you are in the fairly early stages then I am sure things will improve with time, meds and lifestyle adaptations. It can be very slow progress with setbacks but you will have happy times again x
— Begin quote from “Jem”
I know it does take a lot of getting used to and I understand exactly how you feel. I think the beginning is the worst so if you are in the fairly early stages then I am sure things will improve with time, meds and lifestyle adaptations. It can be very slow progress with setbacks but you will have happy times again x
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I sure hope so. I am new to this and i have not been doing the migraine diet so i guess i have to do it. I keep refusing to believe this is all migraine related. I think once i get a few other opnions and see dr. Cary at johns hopkins i will feel better about what ever is diagnosed. Its just all so new. And i know deep down dr cary will tell me vestibular migraines
Hi,
When I was at my worst in 2010 I found travelling made my MAV a lot worse. I went on holiday to Cornwall (England) which is known for its small winding roads, and the next day when I woke up I could barely stand I was so bad. Even now when I would say I’m 95% recovered I still find things that challenge my balance (e.g. walking on uneven surfaces, or walking in the dark for a while) or provoke motion sickness (cars, buses, trains) can make me feel worse for a day or two afterwards. It seems like my brain doesn’t like anything that challenges my balance a bit more than usual.
So I would think that even now I would likely feel pretty bad after the kind of travelling you have described. However, to try to reassure you a bit, it’s not severe enough any more that it would stop me being able to work and do normal things, it would be just be that I could feel my balance was ‘off’ and I’d maybe get the odd weird sensation of false movement for a few seconds every now and then. I’ve also found my tolerance for motion sickness has improved a fair bit.
I also remember in 2010 feeling like you and finding it very hard to accept the MAV diagnosis, especially as I’d been a long-term migraine sufferer, and I could see no connection between my headaches and my MAV. I think a lot of us go through this stage, before finding acceptance of the condition.
Also, on a separate point, I would see a doctor about the bruises on your legs. It’s probably nothing serious, but might be worth having a blood test to be sure. Just because you have MAV it doesn’t mean every symptom you have is connected to it, so always check out other symptoms just in case.
— Begin quote from “beechleaf”
Hi,
When I was at my worst in 2010 I found travelling made my MAV a lot worse. I went on holiday to Cornwall (England) which is known for its small winding roads, and the next day when I woke up I could barely stand I was so bad. Even now when I would say I’m 95% recovered I still find things that challenge my balance (e.g. walking on uneven surfaces, or walking in the dark for a while) or provoke motion sickness (cars, buses, trains) can make me feel worse for a day or two afterwards. It seems like my brain doesn’t like anything that challenges my balance a bit more than usual.
So I would think that even now I would likely feel pretty bad after the kind of travelling you have described. However, to try to reassure you a bit, it’s not severe enough any more that it would stop me being able to work and do normal things, it would be just be that I could feel my balance was ‘off’ and I’d maybe get the odd weird sensation of false movement for a few seconds every now and then. I’ve also found my tolerance for motion sickness has improved a fair bit.
I also remember in 2010 feeling like you and finding it very hard to accept the MAV diagnosis, especially as I’d been a long-term migraine sufferer, and I could see no connection between my headaches and my MAV. I think a lot of us go through this stage, before finding acceptance of the condition.
Also, on a separate point, I would see a doctor about the bruises on your legs. It’s probably nothing serious, but might be worth having a blood test to be sure. Just because you have MAV it doesn’t mean every symptom you have is connected to it, so always check out other symptoms just in case.
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Thank u so much for this. It is very reassuring. I felt really bad last night. I think i bad so many triggers. Coffee, sudafed, eating whatever, and that trip. I had a borrible headache tbe whole rest of the night. Today i start fresh. I am going.to try the migrai.e diet and no more cofee. I feel a bit better tbis morning.