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Recently Diagnosed w/ Vestibular Migraine

I’ve been recently diagnosed, but I’ve been dealing with vertigo for a long time. It first came about around 18 years old (I’m 34 now). Male if it matters.

Past History

For a bit of history, I dealt with debilitating vertigo for around 2 years before finally making it to a neurologist. It was so bad I had to drop out of high school my senior year. I ended up having a dangerously low B12 level (no idea why). The neuro gave me injections of B12 to get my level back up, and RX’d me Klonopin for vertigo. I don’t know what my original diagnosis was. They never really told me, and I was so young it is hard to remember anyway.

It is hard to remember if they were migraine-like because it has been so long, but I definitely had headaches back then. I can remember thinking I must have a brain tumor or something because they hurt so bad!

As far as the treatment I got along pretty well. Vertigo didn’t completely go away, but it was manageable. I ended up getting diagnosed with TMD from my dentist who happened to be my uncle, so I trust him. I know there is a lot of wild claims with what TMD can supposedly cause. I didn’t believe my bite being off could cause dizziness, but he made me a splint for free to fix my bite. I was able to get off the Klonopin slowly, and to my surprise, my vertigo was completely gone!

This vertigo free period lasted about 3 years. It was great! I thought wow it was my jaw this whole time. I dealt with some pretty heavy anxiety and panic attacks from going undiagnosed with vertigo for so long. All this pretty much vanished. I was not on any medication at the time.

Vertigo and Friends come back

After a pretty stressful event in my life BAM, I got hit with bad vestibular issues/vertigo, terrible anxiety, and horrible muscle pain in what seemed like it happened “overnight.” It probably wasn’t overnight, but that is how it felt.

This has been going on for a bit over 10 years. Naturally, when this occurred, I thought it must be my bite was off from the TMD, but all that checked out. I ended up being put on Klonopin again and Zoloft.

Present day

Fast forward to now I have come off of the SSRIs. I found out they were making my muscle pain much worse. Apparently, that is a side effect that no docs seem to know about at least in my experience. Coming off was hell, and it still isn’t that great.

I am still on Klonopin, which I know isn’t a good long term med, but here I am. Of course, the docs didn’t warn me about any negatives at all. Sorry, I’m a little jaded with doctors. I’d love to try to slowly taper off, but I’m just not in a good spot right now for that.

The new neurologist prescribed Topamax which after reading about the potential dangerous side effects it is a bit of no go for me.

I’m also really med sensitive, and after basically trying every SSRI this year and having the side effect of excruciating muscle pain on all of them I’ve been on quite the med rollercoaster. I’m a bit over meds, but I hate feeling like this as well.

As far as symptoms go, I have vertigo, tension headaches at times (never migraine), tight neck muscles. Specific patterns seem to make it worse (think busy carpet patterns). I feel like either I am rocking on a boat, or my surroundings are. The thing is though it is a constant feeling of rocking. There are times when it is much worse, but it is always there. I’m a software developer, so I look at a computer all day. I feel looking at the monitors makes it worse, and I have weird vision symptoms. Think like little spots floating around and blurry vision at times. I’ve had my eyes checked, and they always say they’re good.

I have done a lot of reading on this forum and in general, but I want to hear from people that deal with these issues.

Does this sound like vestibular migraine? Can anyone relate? Can you have constant vertigo from vestibular migraine?

Thanks in advance and apologies for such a long post

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Hi Robert! Welcome …in my opinion it does sound like MAV, a lot of us have the constant rocking/swaying sensation that you described and like you said the intensity varies.

I don’t have much advise about treatment since I’m relative new to this rocking boat but I think you found your group of people …this site is amazing & you’ll receive great advice from the most experienced folks.

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Welcome! I am sorry to see you here, but I am glad you found this forum

My story is very similar to yours. I am 32M and have been afflicted with MAV for almost 6 years now. I too work at a desk all day staring at a computer screen, and it is indeed difficult at times. My symptoms are almost exactly as you describe, an internal rocking feeling, marshmallow floor, eye floaters and stiff neck and back muscles.

Some things that have helped me improve over time: I now take 60mg Nortriptyline and 900mg Gabapentin per day. These have really helped me return to a quasi-normal lifestyle. I still have symptoms, but they are much more muted and only really get bad when I eat something I shouldn’t (like pizza - man I miss pizza)

I also did vestibular rehab therapy a few years ago. This helped me to compensate a little bit, but it did not eliminate the migraine issue, and unfortunately did not lead to a full recovery.

I see a chiropractor weekly. Your mileage may vary with things like chiro and massage. Some people find they help, some find they make things worse. For me personally I have a few bad days immediately after a chiro adjustment but it always helps me feel better a few days later.

My advice is to keep trying different medications. My neuro compares stuff like klonopin and other benzos to putting an bandaid on an open wound. It may hide the issue but it doesn’t fix the underlying problem. There are plenty of meds (like Gabapentin) that have low side effect profiles and may help. Start at a low dose of whatever medication you decide to try and work your way up over time. This will allow your body time to adjust

You’ll find a lot of good resources on this forum, or if you just need to vent frustrations there are plenty of others here who will listen to your gripes

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Welcome Robert. Sorry you are suffering.

TMD can mess with Eustachian Tube. Dysfunction of the ET can definitely cause vestibular upset.

Hopefully I’m responding properly (trying not to create a bunch of individual posts)

Thank you! Yes, the rocking in swaying is the worst!

Yeah, I have all these symptoms. Have you ever had any trigger point therapy? Trigger points in the SCM supposedly can cause dizziness. This knowledge has never helped me though, unfortunately

I think I want to try low dose Effexor or Nori. I’d rather try those first than jump straight to Topamax. I tried 100mg of gabapentin once. I feel my dizziness was made worse, but it was also around the time I was coming off SSRI so it is hard to say. Coming off SSRIs made vertigo I’m having now seem like nothing and it is still quite bad now

I’ve seen a chiro before. I didn’t like the adjustments. Massage helps with muscle pain at least

Yeah, I wouldn’t recommend benzos to anyone especially long term and daily. I feel like my current dose is ineffective, but I don’t want to move up in dosage because that is just buying time

Yeah, the neuro thinks my past and present issues are different which I can understand. As far as I know, my bite has always checked out as being correct ever since getting treatment. I wear a splint at night. There will usually be a small adjustment once a year

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Trigger Avoidance is big part of overall prevention plan. I had to quit screens, all screens, TV, Computer, car windscreens, many months.

You sure can.

Effexor is more difficult to quit than the tricyclics (Ami, Nori) if that helps. Amitriptyline seems to be highly regarded for MAV. Both neuros I saw recommended it. Some seem to try Nori first.

Did you think to ask him why? It’s not unusual to have vertigo free periods with MAV I understand. Helen

I’ve avoided SNRIs for that very reason. Doctors have been trying to get me to take Cymbalta forever, but I’ve been hesitant because it seems everyone has a bad story of it being impossible to get off. I’m almost getting desperate enough to try it.

What worries me about Nori is I have taken Ami before, and I had a 130 BPM resting heart rate. They put me on way too high a starting dose (75mg), but that has really scarred me for life regarding meds. I felt like my heart was going to blow up. I’ve read Nori is less likely to have that side effect than Ami but it is still possible. I know my current doc would start me on a low dose 10mg but still…

I guess he thought it was from untreated TMD since once my bite was corrected the vertigo went away.

Hi all. I’m new posting here but not new to VM. One of these days I’ll write out my long, sad vestibular history but for now . . . I took topamax for 18 months when my symptoms were at their height – it’s an unpleasant drug but it worked for me so it was worth it. My vertigo gradually decreased from out of control to manageable. Might be worth a try.
Have you tried vestibular therapy? Again, not easy, especially at the beginning, but it helped me a great deal. Have you tried vision therapy? Turns out my vision is/was wonky. Prisms and therapy helped a bit. How about acupuncture? Chiropractic? Supplements?

I think when we’re dealing with a poorly understood health condition, it pays to be open to different approaches. Keep a healthy skepticism, and be prepared for disappointment, but keep searching. In my experience it’s more likely to be a combination of things that brings some relief rather than one drug or treatment. Good luck, we’re all pulling for you.

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I was just taken off nort for the same reason. I didn’t thing much of it because my dizziness and the anxiety that comes with it have been really bad lately so I thought it was that but then after further investigation and looking at my Smart watch data the problem started right after I upped my dosage to 20mg. Wasn’t even that high of a dose

But it came back. Something must have changed somewhere. Triggers are highly cumulative.

You asked if your symptoms sounded like VM. Most do but I’m not too sure about the muscle pain. Unless it’s totally neck related perhaps it might be a clue for something else. Might be worth investigation. One OF my theories is anybody would be better iff with some valid physical reason for their symptoms rather than being dumped in the wastepaper basket diagnosis that is MAV.

We’ll start a club!

Made plans where to go next? Thought on the blood pressure type meds, beta blockers, calcium channel blockers maybe. Assume you are familiar with Dr Hain but just in case. Helen

I saw you were switching to Effexor in another thread. Have you started yet? I asked my neurologist for Effexor, and he said it didn’t help with migraine. I’ve been reading Dr. Hain’s (I think) stuff for years, and I know that is one he recommends. It is making me doubt my neuro. My neuro pretty much just swapped me to Nori without totally listening. I’m kind of surprised he called me back tbh.

My thoughts exactly… I’ve never really thought of myself as having “triggers”. This is new to me. I will have to start paying attention to what makes it worse. I’d definitely say stress is a huge trigger though.

It is possible it could be my neck. I do have trigger points in my SCM muscle. A few docs have mentioned Fibromyalgia, but that is another “we don’t know what is wrong here is a diagnosis” type of thing.

I do have some symptoms of Fibromyalgia, but my pain is more localized (mostly upper body). I think I have Myofascial Pain Syndrome, but now some are saying it is just a subset of Fibromyalgia.

All of these things really leave you with more questions than answers.

Yeah! I don’t know what I will do really. I’m pretty tired of going to doctors though and meds that don’t work or just give me terrible side effects. Thanks for the link! Yeah, I’ve been reading this site for a long time trying to figure out what the heck is wrong with me.

I start tomorrow, I’ll keep you posted!!!

Nort did great for my headaches. Only a few days in at 10mg and I was already feeling a difference with the pain. Did nothing for the dizziness but I again I only took it for a month at a low dose …hopefully I don’t lose the progress with Effexor

Thanks for sharing your experience with Topamax. What dosage were you on? I’ve not tried vestibular therapy. I have tried acupuncture and chiropractor. Never heard of vision therapy.

Highly unlikely you’d need that if your eyes have been given the OK. It’s not something to be entered upon lightly.

Read Dr Hain on that one with reference to central conditions such as MAV. Some people do do it but it’s not usually recommended until your condition is stable. Helen

Effexor is reputed to be brilliant for Visual Vertigo.

Hello,
I too have been diagnosed with vestibular migraine-
I was dizzy out of the blue for five months straight my eyes were jittery my scalp had sensitivity when I would try to lay on it my eyes felt like they were pulling into my head I felt sick to my stomach and couldn’t eat so I lost 40 pounds from all the vestibular craziness that was going on with me I finally got into Stanford and saw a neurologist she put me on a medication called nortriptyline after about eight weeks on it my dizziness completely stopped I’m now on month for 4 on nortripalyne an I’m still feeling good- I also had vestibular therapy from a physical therapist an that helped de-sensitive my eyes an being able to go into a grocery store an shop without my world spinning out of control- I can even sleep now on my own an nap- I wS unable to before from all the crazy head sensations that was going on…it took 5 months to be able to finally see a neurologist, but boy am I glad I had…mri an ct scans came back clear, no tumors. Not sure if you tried nortripalyne yet, but it saved my life. I started at 10mg then after a week was put up to 20 mg for a month then up to 25 mg an now I’m at 35 mg. This is where I will stop at an goveith it through winter an see if it helps keep all my head issues an vertigo still at bay- it has helped my neck stiffness as well…an neck tendon an muscle spasms…ugh no fun!!!
Good luck
I hope this info helps just a little…:wink:
Michelle-

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Thanks for sharing your story with me @michelle2. I am probably going to try the Nortriptyline. I’ve got to psyche myself up to do it. I’ve developed a bit of a med phobia from some bad experiences.

I was on 10MG of Citalopram for 6 weeks about 6 months ago. I didn’t expect it, but I felt some improvements in my dizziness. Unfortunately, I had the side effect of very stiff, rigid muscles. I already deal with muscle pain, so I had to get off of it. The doc told me I could just stop taking it.

I know about SSRI discontinuation syndrome, but I figured I was on such a low dose for a short time that I’d be fine. That med kicked my butt. I had some of the worst vertigo I have ever had in my life coming off that, and it lasted for a while.

It is tough being so med sensitive. I really wish I could be one of the people that “feel nothing” on a head med. If its a head med I’m going to feel something.

I don’t recall the exact Topamax dosage. I know we adjusted it once or twice at the beginning, then had to titrate off when my condition stabilized. IMO, vestibular therapy is worth a try, particularly if you have trouble tolerating meds. The trick is finding a good vestibular therapist. The VEDA website is a good place to start searching.