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2020 the worst year ever ! Undiagnosed; HELP

Hi Everyone,

I’ll tell my story, its long.

Jan 2020 diagnosed with herniated disc in lower back (was big into bodybuilding). Did PT and made a speedy recovery by March. Got sick in February for a good 4 days, with fever, was negative for flu. Got better and had no issues, 2 weeks later woke up from a nap with ear congestion. Went to urgent care, and they pulled out nasty impacted ear wax. Felt amazing after that although the world sounded very loud! Start of April, started feeling a little woozy and off balance, feelings of derealization, light sensitivity and sound sensitivity. Fast fwd to May, I wake up one night and as I get out of bed, extreme vertigo. This was def bppv vertigo. Went to ent and he did the eply, luckily that went away. However, I’m still stuck with this everyday mild dizziness. Went to numerous ENTs, did brain MRI and Ctscan of ear, all cleared. Symptoms persisted, my symptoms are pretty much always there but mild and then when a trigger goes off they get worse. Dizziness, lightheaded, imbalanced, light and sound sensitivity. Another odd one is I get ear congestion, but only when I’m driving, and it doesnt have to be on an elevated drive either! Also wierd when I drive im not too bad, but when I stop at a light I get the woozys. Saw some neurologist, they do think it could very well be vestibular migraine. My mother suffers from vertigo too, but they diagnosed her with bppv. I really dont think she has that because it’s been with her for 2 years now, she also has light sensitivity. Doctor prescribed me lorepazam but I’m afraid to take, really dont want to get on drugs. Has anyone taken this? I take meclizine on days I have it bad. Been on migrerelief and petadolex for 1 month now.

I’m at my wits end with this, I have a wife, 3 year old, and another on the way. Just want my life back. I get depressed looking back just 1 year ago. I was doing tough mudder races, bodybuilding, just insane how this can happen to someone.

I also get nausea at times, visual stimulation can bring it on. Like watching the ocean waves or even the tv if things are moving fast.

Any advice appreciated.

Thanks

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Hi Rock on. Btw you can add to an existing post by editing it using the little pencil icon that appears underneath.

Well Welcome to The Club and as we can easily say in the nicest possible way on here having joined up long ago Sorry we had to meet up here! Unfortunately that’s life. Insane as it may at the moment seem to you much the same is happening to people all over the World every day. No medics here but from my own experience you certainly sound typical MAV/VM (Vestibular Migraine) candidate to me. I see many classic symptoms and timings. Mother suffers from vertigo. Yep MAV very often diagnosed as BPPV. I was misdiagnosed as that for believe it or not 12 years by numerous doctors and left untreated accordingly other than probably having nearly as many Epleys as many others get hot dinners that is!. The weird when you stop at lights is a strong indicator that your vestibular system is struggling as is the ear congestion. Use the sites Search facility to search ‘full ears’ and you will quickly find out how common a symptom that is. As is nausea and the sensitivity to visual stimulation.

Tell Mum you don’t get light sensitivity with BPPV. Light sensitivity is highly indicative of migraine. Almost diagnostically so. And migraine runs in families. You say you don’t want to ‘get on drugs’ but yet you take meclizine, migrelieve and petadolex? I would suggest bit of a rethink and speak to the doctor about migraine preventative regime. This includes diet (bye bye for a while to caffeine, MSG, dairy, and a good bit more), lifestyle changes and most probably a preventative drug rather than abortives which you take as and when. You will probably find that’s the best try at getting your life back. You will find plenty of info if you have a plough through the Wiki Pages on site. Helen (Btw we seem to acquire a large number of health fanatics, Personal Trainers and such and many young other wise fit and healthy folk),

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Random question, does it ever just go away spontaneously? I ask this because my mother said she had a bought 10 years ago and disappeared after a few months. However, it did come back at the beggining of this year. Crazy how we both got it so close in time. I’m 34 years old , mother is in her 60s. She took ativan said it made her feel good for a week than she started to get shakes from it so stopped. Doc prescribed the same to me but havent taken. Has anyone else taken this ativan/lorezapam?

Hi! Quick comment. I take clonazepam (similar) ONLY on days that I am very very dizzy. Some doctors think that taking it for a couple of weeks can help you reset your vestibular system. It seems that you could have had something in your ear related to be congested, etc, and probably that triggered the migraine or vertigo episode. It is common that after something like this a mild dizziness will kick in. Some providers call it PPPD. So quick answer to your question, you can take ativan for a couple of weeks and see if it helps. But do not take it long term, since you will need to add more and become dependent on it, and the withdrawal is really rough. As I said, I take it once a month or less, and only a quarter of the pill and it brings the dizziness a notch down.
Venlafaxine is used as a first option drug for what you are experiencing. That is a preventive that takes a little longer to kick in.
Don´t lose hope, you will feel better. And I can attest that although my dizziness is still there, I can function almost normally.

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It does seem to sort of go into remission for a while without treatment sometimes for some people. Personally I had childhood migraines then nothing until I hit the menopause. Then BAM the headaches became severe vertigo. Women seem far more affected by hormones with MAV than men. There are distinct patterns, several different ones that cover the various patterns most women experience. Sometimes straight migraine returns as vertigo/dizziness or even goes the other way. Then again some people never experience true migraine. There are at least as many variations I have noticed as therefore days in the week. Your Mum’s is most probably very hormone influenced. Yours not so.

You can always use the Search facility to check out lorezapam. Where I am in UK benzos are all but banned so the answer would be a definite ‘No’. Propranolol, Amitriptyline, Topiramate top the UK list for preventatives. Venlafaxine is common in the US but there are many many others aside from highly addictive benzos.

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Sorry to hear. I was first diagnosed with Vestibular Migraines then PPPD (Persistent Postural Perceptual Dizziness) and was told all could have been caused by Vestibular Neuritis. It’s been over four years now with dizziness, fatigue, nausea, and head pressure. Noise and anxiety seem to be the biggest trigger of my symptoms. I had at least two or three bouts of BPPV and could tell this was different. Not spinning vertigo, more the feeling of being drunk.

It’s difficult not to freak out, but do whatever you can to lessen stress and anxiety. That’s easier said than done but very important. Try meditation or breathing exercises or a body scan. You may never learn what caused your problems and may never learn the exact name of your condition. As long as you have ruled out bigger health problems, that can at least give you some relief. The mind is very powerful and seems to have its own agenda at times.

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Almost exactly the symptoms I have (persistent mild lightheadedness, imbalance, sensitivity etc.). My diagnosis is “PPPD”. Controversy on here over whether that’s a BS diagnosis, or a variant of migraine, or something else. But do look into this diagnosis, and see if it sounds familiar to you.

You say “when I drive I’m not too bad, but when I stop at a light I get the woozys.” In the original diagnostic paper about PPPD, Jeffrey Staab et al. write “Most patients feel best when still, but others report that moving at a modest pace (e.g., walking or riding a bicycle) is more tolerable than remaining stationary.” Again, later: “a minority of individuals with PPPD experience temporary decreases in symptoms during modest motion.” So your experience isn’t weird, it’s quite normal!!

No real advice except take lots of walks and focus on diet, in particular cutting out anything stimulating, like caffeine. Weirdly alcohol seems to relieve symptoms in PPPD (because it calms anxiety? because it’s a vestibular suppressant?), but still not a good idea…! Do the supplements - B12, B2, D3, magnesium, CoQ10. My thought is that something’s thrown your brain out of whack (Shin Beh writes that PPPD is “triggered by an event like… vertigo, that throws off the brain’s neurotransmitter milieu and chemistry, resulting in a constant state of dizziness”) and it needs time to work its slow way back to normal again. You can’t force it, you’ve just got to create the right conditions, and let it take its course.

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Absolutely agree, I have been focusing on meditation and keeping calm. Exercise on my good days. I do alot of functional training and feel it helps with at least my confidence in balance. The mind is def a strong thing. Take it easy

Thanks Dave I def feel as though I may have pppd or some anxiety. I need to run this by the doc. Working on alot of exercise and meditation to calm me down. I take migrerelief and petadolex but havent seen much help, only been a month though. I just got a bottle of coq10, going to start next week. Did u find supplements helped you?

It definitely sounds like MAV or VM (different names for the same thing) to me.

It is possible it was set off by various earlier problems - mine hit me after knee surgery plus stomach infection! When the stress on the body/brain stacks up is when it’s most likely to hit.

It seems like your dr is on the right track, although I can’t comment on those meds.

You can see my journey in the thread The Pizotifen Diaries.

I’m much better now, but it’s been a long haul!

Good luck!

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Again you will find a lot of experiences on pretty near every supplement known to mankind by using the Search facility. I was advised to try Q10 for 6-8 weeks and stop if there was no noticeable improvement. Same applied with B2. Dose for the Q10 was 150mg twice daily. Some people do obtain control with nutriceuticals alone.

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I have both vestibular migraines and meniere’s disease. The symptoms often mimic each other, but they have different triggers. It may be helpful to keep a journal to help you find what triggers your specific symptoms. Avoidance of triggers and medications keep me fairly asymptomatic. Best of luck to you

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