The Vestibular Migraine & Secondary Hydrops Community
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Glad to find this forum

#1

Hi, I am newly diagnosed with VM. 1st OT I went to thought of it immediately because he too suffers from it and recognized the symptoms but some of my symptoms didn’t seem to really fit so he became unsure and sent me out for more testing. Went to see a specialist OT (specializes in dizziness) and he assured me that having some symptoms that others don’t have doesn’t mean anything. He suggested I check out this website and gave me some other reading material that was helpful. My episodes were 2 or 3 times a year but recently (I have been under a lot of stress) they have been coming on about every 2 months or so.

My symptoms always happen in the morning before getting out of bed. Sometimes it is true vertigo and I have to just lay there until it passes, other times it is extreme dizziness with or without unsteady gait. Sometimes I have to get back into bed and just wait until it calms down other times it seems to calm pretty quickly and I can at least function although not optimal (I stay at varying degrees of dizziness) It will usually last 4-5 days with the first day being the worst and getting progressively better each day until day 5 where I am just a little dizzy most of the day. I have had it last a month and a half with being just varying degrees of dizzy usually getting better as the day goes on.

I have headaches but not always with the dizzy symptoms and not usually debilitating just very painful or annoying. Was 4-5 times a week, but I have found magnesium to be helpful in lessening both the severity and number of them. It has done nothing for the dizziness though.

Confusion or better yet the inability to organize my thoughts is a big one for me and always accompanies the dizziness. Diarrhea is also a symptom I have most of the time when having an episode. Also Tinnitus always there but much worse during an episode.

A bit longer than I anticipated but I guess I just needed to get it out! Since mine do go away and I have weeks and even months of being “mostly symptom free” I feel lucky compared to many of you I’ve read about on here. Thanks for the chance to tell my story. I’ll keep digging through here to glean what I can.

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#2

Wow, the specialist recommended this website? Do you mind if I ask where you are located (city, state, country)?

#3

That’s a smart OT. I’m glad that you made it here - welcome!

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#4

Hi and very welcome

Some interesting points you’ve raised. Oh, and never worry about length of post or venting. Length if post, well I;m beginning to think a policeman would not be able to get a fingerprint off my index finger, it’s all ‘rubbed off. (Could touch type on a PC but these dats much prefer the Ipad). Regarding venting. We all do it from time to time.

Ah, somebody who thinks outside the box! That’s pretty unusual. MAV is so variable there aren’t many hard n fast rules.

His open mindedness suggests to me you are US based. UK medics tend to frown on any form of self education. With a few notable exceptions They don’t know much about MAV so don’t want patients that do. My own GP always refers to me as “the Lady What Reads”, a phrase she uses as often as she can squeeze it into the conversation, and by her tone, it’s no compliment. Still the last time I met her in surgery I showed her how to unblock her printer which I kinda thought made a point.

Probably what we call “Brain Fog”. Common with MAV.

Goes with the vertigo, well mine does, and I vomit alot too. Increased tinnitus is always a sign of a more acute period.

Yep, mine was very similar to yours and came and went leaving me symptom free inbetween atracks for a decade then one day it came, and forgot to go away. From this experience and wishing to scare you I think you would now be at a good place to seek treatment (ie preventative meds) because I always feel as long as your body is still capable of resetting itself which it must be because it still does, you stabd a much better chance of a quick and complete recovery than somebody whose symptoms have already been tipped over into being 24/7. I’m a patient. I am not a doctor but IMHO that’s how I see it. We seem to have similar symptoms. Read my PD if you want to check out my journey. Best Wishes. Helen

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#5

Hi Manatee,
I saw the specialist (Dr. Rausch) in Boston. He teaches at Harvard when not at the MASS ENT. He gave me a “handout” from a (Johns Hopkins) Dr. John Carey. On the hand out, this website is specifically mentioned and my Dr pointed it out to me and highlighted it.

The handout also mentions another website www.dizziness-and-balance.com if anyone is interested in checking that out. I have not yet as he didn’t highlight that one.

#6

Thanks Heliotrope, I’m glad to be here as it gives me a bit of hope!

#7

Thanks Helen,

I will read your post. Actually yours was the first comment I read that “hit home” with me and gave me courage to chime in! I am going to continue to work with my Drs. He has recommended I first try the diet recommended in the book “Heal your Headache” by David Buchholz if I think I am disciplined enough! After that if I am getting no relief or just want to move on, he said we would start a trial of meds. He told me the med process could be a long one as there are close to 60 different meds out there and it will somewhat be a trial and error to see which one works for me and doesn’t have crazy side effects etc…but that together we would do it if that’s the route I want to go. For now going to at least try to find my triggers and see how it goes from there!

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#8

Good place to start the Migraine Diet. Be disciplined. It’s a must. I think they generally recommend several months on the diet to start to see results. Your doctors sounds great. At least they are telling the truth, every word he said. Now you know the score and thst should stop imagining you are the only one who will never improve when you see no improvement after a couple of weeks on the diet or on Med No 1. Might sound odd to you but I like that approach, very much indeed. Good luck with the triggers. Suggest you search ‘triggers’ on here and read up and get a notebook or set up an app,to keep diaries and make notes of everything to start with bith foods and environment triggers and also make symptoms lists and score out of ten, and set it out in a table so you can watch things progress by severity and time. Tedious but it will prove useful. Glad you felt able at last to take the plunge. See it doesn’t hurt half as much as the headaches, does it. Helen

#9

You’re in good hands with Dr. Rauch. That’s great that he’s aware of this forum.

The www.dizziness-and-balance.com website is Dr. Timothy Hain’s website. Hain is the leading expert in the US and his website is written for both doctors and patients. It contains a wealth of information and the more you dig, the more you’ll find on his site.

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#10

Yes you can’t go wrong with both of those websites!! :wink:

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#11

Hi, welcome!

Yes, I’m on my 3rd med (Verapamil->Topirimate->Amitriptyline) and seem to be on the path to recovery. In fact, both Verpamil/Topirimate made a dent in MAV, but the side effects became too much. If you believe you are having a lot of migraines, you can also look into getting a Cefaly device. It’s a bit early to tell for me, but my Cefaly seems to be helping a good deal. Good luck, it just takes time and patience and trials of meds!

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