Diagnosed with migrainous vestibulopathy

I am new here so sorry for choosing the wrong category for my post. I read like 70+ posts on this forum because like many of you I am trying to find what is the problem with me. Also sorry for any mistakes I am going to do,english is not my native language.

Let’s take it from the start. I am a skinny af male 23 years old without any health issues beside Hashimoto’s (the only problem is that I have very increased antibodies) and a chronic chroch pain (started one day before 5 years randomly and to make a long story short I did a surgery for variococele and hernia but the pain persisted.) To make you understand I cant run or do excessive practicing because pain is really bad, a sharp like knives pain and affects also my low back(This is peopably neurological problem). Another problem is a fullness in my right ear and pain behind the lobe( pain inside the ear). This started before max 2 years after wearing some new headphones, were really tight and causing me pain especially behind the lobe. The volume also was really high. So I searched it with ultrasound and classic otological exam and the only finding was that in my right ear behind the lobe the skin is a bit thicker. This is still a problem for me the fullness and the pain spotaneously.

I am a guy who sits all day to his pc and playing competitive games (waring headset all day long, listening to music and talking to friends). The last year I went also many times to internet cafes and using headsets there and many times my ears was hearting from the loud sound and getting vertigo like spells with a sharp head pain for some seconds(i was thinking that this were migraines). This was more intense when I was drinking anything with caffeine like a redbull plus my vision became a bit blurry and shaking a little but I was woke and my reflexes where crazy, the only problem was my night sleep after so much caffeine.

Like I said I am a skinny guy and I didnt eat very well and some days I ate only once so one problem I was experiencing dizziness and headaches (normal dizziness not like this one I am experiencing right now), random sharp head pains with sudden tinnitus on my right ear or left amd loss of hearing for about 5 secs (migraines propably) and when i was standing up I was getting dizzy and everything were going black for like 5 seconds. Beside this problems I was pushing myself a lot to stay awake and play more or do stuff I like and I managed to do it really well.
So before 6 months and for like 2 months max I was taking doxycicline for acne 100mg once a day. I was taking the medicine late at night before sleeping. To be honest my doctor told me to take 2 doses but I started taking one.( the doc was really chill with this medicine like it is a candy) When I was taking the med I was getting a bit dizzy and mild headaches, many times I was thinking if this happened cause I wasnt eating well.
That period caused me a bit anxiety and fatigue of course cause of uni and the meds(I had a small breakout of acne which caused me “depression” and wanted to be clear again). When I was returning from uni I was getting straight to play no matter how I was feeling and staying awake until 4 am.

One day I was felt a bit weird like I was sick went to bath and had really hard time and felt many times like my head is gonna explode getting bit dizzy. Then I took 500mg paracetamol and went to uni. After an hour on uni I started to feeling really tired. When I was returning I was talking in phone with a friend(wearing these f*cking earphones which get inside your ear and you feel your own voice. Those were making me dizzy and caused me headaches). I started feeling my head heavy and having sharp feeling pain. Then ate a small launch and went to my pc. The game I played requires high reflexes and fast reactions I am just mentioning it. Pushed myself to stay awake while I was feeling sick and exhausted until my eyes were going backwards( like when you are sleeping) and after I saw that my vision blurred and was really really slow. I wanted to see to the left and I needed like 2 to 3 secs to stabilize. Took my med went to sleep with a headache. After this day I stopped the doxycicline and took 2 panadol cold am flu cause I thought I was sick. I felt like I had fever but I didnt.

The next day I had a really intense dizziness and headache like my head is gonna explode from the temples, the back and the top, my vision was really slow couldnt track stuff, it was like a visual vertigo I think. I tried to play and my symptoms were getting worse plus started had sinus pain amd eye pain propably cause I was trying to focus. To make it short after 3 days went to my GP said I have positional vertigo and gave me betahistine 6mg at morning and 6mg at night plus norgesic for a week max beacause he said my neck was stiff. Then went to an another GP and said to make some blood tests. Blood test were good except D3 which was low. Then saw ENT and an ophthalmologist and they said I am ok. The ENT said to chill and keep taking betahistine. Then I went to neurologist and said to do an brain MRI which came back normal and told me that propably I have labyrithitis and I need to stay away from monitors and loud sounds. Went to another ENT told me to keep up the betahistine treatment for 20 more days amd if this not help cone back and check the labyrinth and see an neurologist for the headaches. After 2 weeks ended to ER with burning sensention in my head and having trouble with my eyes still and feeling like I am drunk. They told me to do some exams all came back normal. Went again to ER like 3 times to tell me the last time that they will do a spinal tap and some blood tests for the thyroid. Tbh I scared and never did the spinal tap(I should have done it propably). One ENT in the hospital who helped me a lot psychological and what exams I should do (which all came back normal exept a bit bad nasal septum) told me to see an neurotologist after the treatment she told me to receive. She told me to keep taking betahistine for 20 more days and increase the dose to 12 mg at morning and 12 mg ant night ( dont remember tbh), neurobion and piracetam 1200mg. They did nothing for my syptoms.

Then went to neurotologist he checked my hearing again it was fine and then i did a VNG in the rotarory chair amd he saw nystagmus(tbh i was moving my eyes while i was doing the test not sure if i had then)
And then i did my sel the epley thing alone and he saw no nystagmus. He was taht kind of doctors who doesnt let you talk and keeps talking lol. Anyways he told me that I have migrainous vestibulopathy and he explained how this works. The treatment I receive is 10mg propanolol at morning, 2mg perphenazine and 10mg ami at noon and 300mg gabapentin at night. He told me I am gonna see some changes after 8 days but the only thing I saw was fatigue and my stress levels went down. Another thing I saw was that after taking the noon pill my eyes were really difficult to be controlled. I am gonna see the doc in about two weeks to see what we gonna do next. Just to add all this time I stopped playing or even use a pc as I couldnt and had pain all over my head and eyes plus dizziness and avoiding to drive especially at night.

I am really sorry for the long post I just wanted to make a backround of me and sorry for my english. Do you thing this is MAV or something else cause I am searching a lot and I thing I have from PF to CO toxicity and BVW. Thank you for listening.

Welcome to the board, @Kon and please do not apologise for the length of your post, you are more than welcome to tell your full story.

Best of luck with the treatment protocol.

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Thank you @turnitaround ! I am feeling really hopeless for 4 months now because none of the meds made me better and be for at least an hour like I was before. Also I always search in google for this thing I have. Searching the syptoms etc and every time I think I have something else…

Welcome Kon! It looks to me like you found your people. :slightly_smiling_face:

Thank you @flutters :slight_smile: I hope you doing well read many of you posts while I was searching for my symptoms.

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Hi Kon!

Welcome to the forum! I am sure you will find lots of support and kindness here. We all understand this dreadful illness and so can offer lots of hope and encouragement for eachother :slightly_smiling_face:

I admit, reading your post reminded me of my gamer boy son still asleep upstairs. I liked you instantly. :heart:

Hello and thank you very much @MNEK18 it’s really dufficult to accept that I may sto doing stuff I liked or even chill without any disturbance from this thing. I already accepted that I will never run or play football cause of my other prob.

@flutters haha gaming is or was my life but it should be done with moderation. :smile:

That’s true of all things, love.

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Don’t lose hope! The meds you’re currently trailling may not be at a high enough dose or not the right ones for you. I tried 4 meds over a 5yr period before starting one thats made a massive difference so please keep the faith!

I believe you will get there :slightly_smiling_face:

My biggest concern is that I am not sure if this is MAV or something else plus if this is gonna be my new self forever. I recently read that if someone has BVW should not receive any ami as treatment cause it makes the symptoms worse. I am saying that because when I get ami sometimes I feel my eyes really weird and have hard time to focus or even move them fast. I need to stop searching on google stuff probably.

Yes, I agree! I was constantly on the internet trying to work out what was wrong with me but it can prove to be anxiety inducing I found.
Have you thought about a second opinion? Are you UK based?

I am not familiar with BVM… perhaps a second opinion from a Neurologist or Neuro-otologist may quash your concerns and confirm a diagnosis. That may help put your mind at rest.

Nope I am not on UK. Yes I was thinking about a second opinion but the problem is that I talked with the secretary of one other neuro-otologist I found and she said I should stop the treatment I am receiving so the doc can check me. Tbh this sounds normal to me but if I stop the meds maybe I am losing progress. Just to add I am a very anxious person about everything but that’s how I work. I have “PTSD” from my other problem with the doctors and I am not easily be persuaded cause if the situation is complicated I feel they have no idea and they dont even try to help.

This is exactly how I feel Kon, welcome and you are definitely not alone in this

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Hello and thanks! :slight_smile: Do you have any diagnose from a doc or you are just like me you dont trust any of them?

I was diagnosed with MAV specially because migraine pain history but before that was told I could have a variation of Ménières and although I was reassured that it WASNT menieres by my new neuro-otologist, it is always in the back of head specially because my mom has it

I read that Ménières is more episodic and not continuous as MAV plus you should probably have sone hearing loss if I am right. Are you taking any meds for this currently? If yes did they help?

Yeah that’s what the dr said, I don’t have any hearing loss …I started nortriptyline about a week and a few days ago, haven’t noticed any improvement yet

Er I think you may have missed out a ‘not’? Helen

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Sadly all of these meds need like 2 to 3 weeks to start doing their job as I know. Hope they are going to do their job :slight_smile: