Undiagnosed Vertigo & Headaches

New here, let me introduce myself šŸ¤
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Hi everyone. Just looking for some simliar experiences\guidances so please read carefully of my following story. I am so close to giving up.

I am a young 25 year old male who used to be healthy and active untill my debilitating Vertigo\Brain Zaps and Constant painful headaches begunā€¦

It begun about 3 months ago where i started to notice to get brain zaps\shakes\vibrations and dizzyness along with constant daily headaches from the moment i woke up. Thing is though when i was sitting down @ home or on the couch the dizzyness\vertigo and headaches were barely noticable. It was pretty livable. The only time it affected me was when i sat in the car and had to drive, the zaps would start, the headaches the vertigo the nausea would make it so uncomfortable to drive. I hated it so much went to the doctors for it. Long story short MRI\CT and all sorts of tests were done for the Middle ear, Brain, Heart and Chest and no issues or underlying issues were found.

Doctors then said it just could be related to the anxiety that i was having previously which i find hard to believe because ive been dealing with anxiety for a long time and have never had issues like this. Anyway fast forward 1month or 2 and i slowly just started to move on with life and ignore it and before i even knew it it had faded away. I remember one day sititng in the car and thinking great time to experience some vertigo and brain shakesā€¦ when it didnt happen at allā€¦ i was amazed! i noticed the symptoms i usually had had moved from driving to happeneing when i was sleeping, which was fineā€¦cause I was laying down anyway My god that was amazing it just faded on its own, the headaches reduced to about 1 every second day and only lasted an hour or so. I was able to work again, i felt like my life had gone back to normal, felt SO f&&&ing awesome!! Was in the bestest mood ever! The dizzyness was still there but extremely mild and havent experienced a brain zap\shakey weird feeling in weeks!

I also visited an ENT which said it could be vestibular migraine and gave me Sandomigran Pizofiten to try but I never did in fear it would mess up my anxiety and also the fact that it had gone away by then on its ownā€¦

Then 1 week and half ago out of no where woke up with a headache thought okayā€¦ must be just a headache, sat in the car went for a drive IT WAS BACK exactly like it was, soon as i sat in the car and drove BOOM motion sickness, headaches, vertigo brain shakes and have been suffering again for over a week now. This time i think its alot worse or i just forgot how it felt, my headaches are constant all day especialy when standing and walking and making me feel really sick at times. Its extremely debilitating and making me just want to lay in bed all dayā€¦ I really cant figure out what stopped it or what started it again i cant think of any triggers other then im sick and tired of it.

I was taking Seremind and stopped it 2 weeks before my symtpoms returned but doubt it returned cause of that.

Can anyone help me with similiar cases and what it ended up being? Im so young and this is stoppipng me from being happy and exersising and being healthy

Most recent update is doctor is sending me for a sleep s tudy might have sleep apnoea causing oxygen loss to the brain cause even though ive been sleeping long i always feel tired and yawn during the day still

Other option is I sleep underneath a window and can feel breezes along my head ( cold ) while i sleep and i sleep in this breeze\cross wind every night might that affect my head? maybe i try sleeping away from the windowā€¦

Not only is it just debilitating its causing my anxiety to flare up again, doctors have all told me its nothing serious and to try ignore it but its hard to ignore something tha taffects you so much you can tell me all you want that its not dangerous but when a bad bout of it flares up it scares the sh**t out of meā€¦

any advice would be greatā€¦ thanks i am not usually a person who is bed written all day and i want my normal self back, jst confused as to why it went away n came back??

Should i try the Pizotifen? Only reason I dont want to is i dont want to have to rely on medication for the rest of my life and the fact that they cant pinpoint vestibular migraine and dont want to take it for no reason?

Or should i just give it a shot? Doctors say to just try it for 3-4 days ifi feel better to continue if not to stop and i will not have any withdrawls.

Never tried SSRIā€™s never will touch that stuff. My anxiety was beaten on my own with my psychologist and feel great other then this dizzyness.

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Hi Danny. No doctors here so we canā€™t diagnose but maybe your thread title is just a bit misleading. You have been given one diagnosis alreadyā€¦ You have seen one ENT who said Vestibular Migraine and prescribed Pizotifen. Sounds good to me. My own doctor said ā€˜you will soon know whether it works or notā€™ which is a bit of a bonus cos nearly all other preventatives take minimum of a month and sometimes many months to workā€¦

As a fellow sufferer I will try very briefly to fill you in a bit on Vestibular Migraine. It comes and goes and comes back again to suit itself. You are unlikely ever to be able to work out what/why/when made it reappear when it did. Best not drive yourself silly wondering. Save energy for something more productive would be my advice. And treat it. It will constantly morph over time usually in the direction of getting worse otherwise. Give the Pizotifen a try. If that doesnā€™t work ask for something else. There are many others out there. If the Pizotifen doesnā€™t work might be worth asking for something like Venlafaxine or Amitriptyline because that should also help with your anxiety. And maybe get your psychiatrist back. Vestibular conditions go hand in hand with anxiety.

I wouldnā€™t bother about moving the bed. I doubt the breeze is causing your current problems. Accordingly to that ENT you have a known medical condition Vestibular Migraine. That causes exaggerated sensory reactions to various triggers so you wouldnā€™t be taking the Pizotifen for no reason but for a very valid reason to hopefully control your symptoms do you can go on with your life. The fact that there is no specific definitive test for VM doesnā€™t mind it doesnā€™t exist or cannot cause many people much discomfort and disruption. Neither does it mean it cannot be got under control. Thankfully. Most people find it hard initially to accept a diagnosis that cannot definitely be proven perhaps thatā€™s why medics tend to emphasise that if the preventatives work that proves it was VM that you have. Maybe give Pizotifen a go.

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Sorry for my mis-leading title its just that he never technically diagnosed me just said it might beā€¦ Also he told me to just try it for a few days if it doesnt work within a few days to stop.

The ENT then said if the meds dont work he doesnt think its going to be related to my ear or anything vestibular, he said if the meds donā€™t work then the next step i would take is going to look at your sleep, and doing a sleep study.

Just weird IMO. I am bit worried about taking the meds because i read about withdrawl symptoms, etc which I dont want to go through for nothing. Although its only a 0.5MG

My ENT also said the medication should help me relax and sleep better, not so much the anxiety but more the worrying about what is causing my dizzynessā€¦

I also have to shamefully admit i do have a bit of medicaiton anxiety when it comes to strong meds like theseā€¦ I see side effects like causing even more dizzyness and then get scared of taking themā€¦ hmmā€¦

Also for me if im sitting on my PC or laying down in bed in quiet environment i feel perfectly fine, its when i get up or listen to bit of loud noise when i feel it, and its the absolute worst when im driving, i guess cause of the motions of my head while driving

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Donā€™t worry about the title possibly being bit misleading. You very rarely obtain definite diagnoses with vestibular conditions. I have never had a ā€˜definiteā€™ one either. All I got was two different specialists both separately said ā€˜probableā€™ and thatā€™s because you or I didnā€™t actually tick the box for every single symptom on the check list. Few people ever do. My reading of your ENTs words is ā€˜cant prove it but I guess it is VM so will go on and treat you for that and seeā€™.

Best not to read the side effects list first as you have medication anxiety. Look at it this way aspirin can cause a bleed on the brain but millions take them every day and have you ever personally known anybody who did? I havenā€™t. Then again If we read the police road accident reports we would never feel brave enough to cross the road ever again I suspect. Yes early on the side effect of dizziness certainly out me off. Only trouble with VM is it can very easily get worse if not controlled so either way one can end up dizzier unfortunately. Might I suggest you really do need some medical input for your anxiety perhaps even before the Pizotifen? Might be best idea. Btw not sure what country you live in but in many your driving insurance is invalidated if you drive whilst dizzy or suffering vertigo unless you have clearance from the insurance company and the relevant driving licence authority. Check it out. In UK your doctor has a duty to report such conditions to the DVLA.