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Hello Everyone, Could use a little help here

My apologies for the long post, but I’m looking for anyone with any insight, and maybe someone out there is struggling like me and looking for answers.

For starters I’m a 28 year old healthy male. I have no history of medical problems. No migraines, no frequent headaches, just a normal generally healthy guy.

In July 2019 I jolted awake because I was late for an appointment. I rose from a laying position to straight up and began walking. As soon as I quickly rose to my feet I was extremely dizzy and off balance stumbling around to get to the bathroom. I never had any nausea/vomiting from this. I drove to my appointment dizzy and off balance, after my appointment I returned home and laid on the couch.

I remained on the couch for several days, even in a laying position if my eyes were open I felt dizzy and off balance. For these several days I didn’t do anything but lay there and wondered if I was ever going to get better. After a couple days one night I decided I should go to the ER and make sure everything was okay, and try to get an answer to what the hell was happening to me.

The ER doctor told me everything physically with me was fine, and that I was probably suffering from a BPPV episode from my rapid movement from laying to standing. OK. She told me if the symptoms didn’t dissipate after 2-3 days to see my PCP. Fast forward 2-3 days I was able to get up and move around, however the dizziness and feeling of being off balance persisted. My PCP scheduled me for a same day CT scan, but he agreed with the diagnosis of the ER doctor that it was probably BPPV. I went for my CT scan that day and got the results later that afternoon. All clear. I returned to my PCP the next day and he told me that I should give it another few days, and come back. Few days went by, symptoms persisted, and at that point he told me I should go to physical therapy for vestibular therapy, and that after a couple visits and having a them perform a few maneuvers I should be all clear.

The next week I went to physical therapy. The therapist performed multiple methods of the Epley maneuver, along with different vestibular exercises. This continued for a month. By this time I had started to drive again, and some days were worse than others in terms of dizziness and feeling off balance, however the symptoms were still noticeably there. As I said this went on for a month with no real significant improvement. Back to the PCP.

The PCP sent me to a local ENT doctor. By this time it’s October 2019. The ENT doctor had me complete an audiogram where I had absolutely no hearing loss, I even received a comment from the audiologist that my hearing was extremely impressive for someone my age. I should also mention by this time I had started to develop other symptoms, occasional tinnitus, and fullness in my ears. The ENT doctor scheduled me for an MRI, I left his office with two possible diagnosis. Either it was Menieres Disease, or Vestibular Neuritis. He told me to go on a low salt diet (around 1200mg sodium per day), and set me an appointment shortly after my MRI for a follow up.

With the MRI results in, I had my follow up with the ENT doctor. The MRI showed possible increase in CSF along my ocular nerve. They told me this could very well be the cause of all my problems, and that I should see a neuro-opthamologist. OK. Scheduled an appointment with a Neuro-opthamologist.

Neuro-opthamologist says that the possible increase in CSF on my ocular nerve was my normal, and had nothing to do with what I was experiencing. He told me he believed I was suffering from Vestibular Migraine, and he prescribed me 10mg amitriptyline daily as a prophylactic treatment to stop them. This was the end of November. I started taking the medication.

Throughout all of this I had been waiting for an appointment with the top vestibular doctor in my area, possibly the country. He practices at Mass Eye and Ear, Harvard professors, started the vestibular center at MEEI, you get the point. He tells me I 100% do not have Menieres disease, and that I should get that off the possible diagnosis list completely. His diagnosis was either I’m recovering from vestibular neuritis, vestibular migraine, or PPPD. He told me I should do research on these things, and figure out which category I best fit under.

So here it is Feb 1st 2020 and I’m still suffering with symptoms. I’m back to a fairly normal life, I’m not able to do everything that I used to. I have to take it easy, and try not to stress my vestibular system because i’ll get even more dizzy and off balance. I’m an active person, so being sidelined with these symptoms is starting to take its toll. I find that I can have 2 weeks of feeling OKAY the symptoms are there but not very noticeable. Then I can have a week or more where the symptoms are pretty prevalent and I’m forced to keep going as much as I can.

So if anyone out there has any idea, or has suffered from something similar to what I have your input would be incredibly helpful. Any success stories or recovery from any of these possible diagnosis I have, anything at all.

Thank You.

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Hi and welcome.

My take on your story for what it’s worth is as follows.

Somebody somewhere needs to give you a diagnosis! Or at least get much nearer than their ‘suggestions’, cos that’s all they are, is suggestions. Before they can give you much assistance. We aren’t medical people on here just sufferers from various vestibular conditions so we cannot diagnose you but such statements as this really do make me mad.

My question would be what are doctors being trained for? That’s no diagnosis. It’s just a list of most common possible alternatives that might apply except Menieres which presumably was eliminated dye to your exceptionally good hearing.

As I said I’m no medic but I wouldn’t imagine you could have had ‘vestibular neuritis’ and, er, not noticed it at the time. An ENT once suggested I’d had labyrinthitis that I’d forgotten I’d had. An equally unlikely occurrence I’d say having watched somebody suffer the same condition. Suggest you search through the wealth of information on here relating to PPPD and see if the cap fits. It might. Also bear in mind some times with vestibular migraine it’s possible to get the dizziness years before the migraine arrives. I fall into that category myself. It could just be the start of vestibular migraine.

Your choice as I see it is to go hassle somebody else for a proper diagnosis or just hang in there, see how things evolve a while and see if an obvious answer appears. Which you choose I imagine will depend on how much your Current quality of life is affected.

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Welcome to the forum Floydfan but I’m sorry that you have had to find your way here and that you are experiencing the frustrating myriad of symptoms that many of us can relate to.

You have done brilliantly well seeing so many specialists and having CT and MRI scans etc but it is incrediby frustrating not to have a definitive diagnosis. It is pretty dire that the top guy at Mass left it up to you to research and decide what diagnosis best fits you. I think if you have MAV (or VM/VN whatever your doc chooses to call it) then the neuro opthamologist was wise to prescribe the Ami, but 10mg is a starter dose, were you advised to titrate up? It usually takes 20mg to fifty plus mg per day to achieve a therapeutic dose and can take a few months for the effects to kick in. You need a proper treatment plan and of course a doc to precribe the meds. You should look around your neck of the woods to find a neuro otologist who will do this. If you think you have MAV then taking migraine preventative meds like the Ami are the way to go but you need to find a therapeutic dose and stay on it for a while to let your brain stem a rest, dampen things down before tapering off and see if things have settled. It can be a slow process.

Have you started a “migraine diet”? that might help drop your “migraine load” and/or help you figure out if you have any food issues that might contribute to symptoms although it’s not a cure. The Six C’s diet is the easiest one (listed on this site in several places) or there is a much more restrictive one in How to Heal your Headache by David Buchhloz. For me, cutting out alcohol, caffeine and cheese did help reduce symptoms as well as sadly stopping going clubbing. Keeping a regular schedule of sleep and meals, hydration etc also help.

What are you thinking PPPD or VM? Although of course the symptoms overlap. I guess the difference would be treatment, CBT, VRT etc for PPPD and migraine protocols for the VM.

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So in the reading and information I’ve gathered from both the doctors i’ve seen and the internet it seems like the vast majority people with VM have had a history of migraine or problems with motion sickness. I’ve never had any of that. It almost seems like Migraine progresses into having vestibular problems over time, and not the other way around, but if the reverse is true I could very well be in the VM category.

At this point I have a follow up with neruo in a couple weeks and i’ll bring my questions to him about what the next course of action should be. I’m not really sure how to process to be honest, maybe adjusting the dose of medication i’m on? I don’t think there are many more tests i can through at this point.

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In regards to diet and other habits possibly contributing to my problems, I’ve never been a drinker so i don’t drink regardless, i’m lactose intolerant and have been for the past 8 or so years, so any types of cheese or similar items aren’t in my diet. I sleep 8 hours per night, since i got the possible diagnosis of VM i’ve kept to a strict bed time and wake time. My diet is consistent and the only thing i drink is a small coffee in the morning.

I’ve been asking myself the same questions lately, whether it’s PPPD or VM. The only thing that steers me away from PPPD is the fact that since this i’ve been going through all of this i’ve had a couple weeks here and there when i’m pretty much back to normal. In my reading it seems like people with PPPD don’t have periods of feeling okay.

I think the next step is going to be speaking with my neurologist about upping the dose of the amitriptyline and seeing if that helps at all.

Yes the treatment thing! That’s what’s been driving me crazy, the treatments are so different that if i could just nail down what i have i could go down the right path and get better quicker. Time will tell i guess.

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Good morning @FloydFan, welcome to mvertigo. Sorry your suffering… but you’re in the right place for support.
Have you researched Dr Hains website yet? If not, here is the link. There are many many pages of research on VM as well as all the other nasties that present themselves for dizzy patients. Migraine associated vertigo -- Vestibular Migraine
I agree with @sputnik2, if Ami is the right medication for you, it’s very unlikely you’ll find relief on such a low dose. It was at the 30, 40 and 50mg mark that were the doses that I could see significant improvements.

Hi FloydFan,
I don’t have a history of migraine or even regular headaches or motion sickness and I was hit with MAV outta the blue in Sept 2016. In my quest to get well I was told I had Labrynthitis by GP, Vestibular Neuritis by ENT, TMJ by oral maxillofacial surgeon, Menopause by a gynae, PPPD by consultant audiologist and finally MAV by 3 x neuros. I think you can safely rule out labryinthitis and vestibular neuritis as these are typically of short duration. Don’t get bogged down in putting a “label” on it as many of the drugs that are used to treat MAV are also used to treat PPPD (antidepressants like Ami or SNRI’s like Venlafaxine/Effexor) you need to get on a drug regime that treats the symptoms irrespective of the “name” of the condition. I have tried many over the last 3yrs and I am happy to say that only in the last few weeks have I gotten good (not perfect yet) symptom control - in July 2019 I started Venlafaxine Extended Release at 12.5mg and titrated up to 150mg within a couple of months, my neuro then added in Propanolol extended release at 80mg in December last year and just this week I have increased to 160mg Propanolol. So for me the Venlafaxine addressed the dizzy/drunk/floaty feeling and the Propanolol is addressing the head pressure and facial pain.

This is also worth a read - written by a neuro and migraine specialists in Ireland as a quick reference guide for GPs.

Hope this helps
Karen

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If it helps, I had no history of migraine or motion sickness either. Like everyone else I had occasional tension-type headaches, but that’s it. When I first heard the diagnosis of vestibular migraine I was shocked and doubtful, but the more I learned the more sense it made. Good luck with your treatment and welcome to this forum.

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