Really hope someone might be able to help me. After my Covid injection Feb 21 I developed vertigo type issues. Like the floor suddenly moved underneath me or the seat I sat on suddenly moved, felt like I was walking on a trampoline at times. Then developed what I call an elevator sensation, feels like when your going down in elevator & it bounces as it stops I get that from washing my hands or moving my leg. Balance issues everyday since feel wobbly & unsteady when walking. I got Covid for the first time in may, developed heart problems ever since. My head has been slowly worsening but last night & today is the worst it’s ever been. Head pressure, brain feels heavy, keep feeling like I’m being pushed, or dropped or the settee suddenly swings from underneath me but really severe it’s awful. Some stabbing pains in head & my head is really loud. I’ve had a high pitch electrical sound in my head since this all began & now it’s even louder plus some pulsatile tinnitus.
I’m really scared & lost, I can’t move today, the pressure is a lot & vertigo very intense.
In the last 2 years but not very recent ive had a normal ct brain, normal mri brain & cta brain came back as normal however does say “atrophic pcom” which im confused about. Had vestibular testing done completely normal.
I don’t know why I have suddenly gotten so bad but it’s really scary & intense & no one seems to have a clue. My neurologist at my last appointment just said “sorry”.
Anyone have any ideas? Anyone experiencing/experienced anything similar?
Im scared & I feel lost something bad is wrong I just know it im really suffering
Im on blood thinners as i was diagnosed with sticky blood after jab.
Any help/advice/ideas welcome. Thank you for taking the time to read
take a look around this forum. many if not all of us have experienced what you are experiencing/felt the same way. many/most have either made full recoveries or are managing quite well on various medications and lifestyle interventions.
first thing’s first, you need to fire your neurologist and see an MD (a real doctor, nothing else) that specializes in dizziness/balance disorders.
We can’t diagnose here, but your symptoms seem similar to others with VM and its worth mentioning your suspicion for that at your appointments. Vestibular neuritis is another disorder that than can manifest in the way that you’re describing. But ultimately only an MD can properly diagnose you/get you the proper treatment.
If you want to be proactive, it does no harm to start on the standard battery of migraine supplements:
These take a significant period of time to take effect (if they’re going to work), so you must take them every day for a period of months without giving up.
Your #1 priority should be to getting to a vestibular doctor (neuro ENT, vestibular neurologist, otoneurologist, etc).
Thank you so much for your reply. Will definitely be taking your advice in finding a new specialist.
My balance problems are constant & have been for almost 3 years now. Blood thinners made the biggest difference to the vertigo episodes ie floor suddenly moving etc these reduced to occasionally it still happened but for some reason last night & today they are back worse than I’ve ever experienced before with this head pressure & loud head. It’s really scary.
It’s so hard to find specialists that listen. I’ve seen quite a few over these past few years including ENT did full vestibular testing which came back normal.
I feel totally lost & like I can’t go on, I just can’t believe after all this time, just out of no where this has happened & I’m worse than ever
Ive never had it keep me awake at night before.
It’s very very frightening isn’t it how long have you suffered from these type of issues & are you better now? X
I’ve been having problems since September 2021. Its been quite the journey, and I’ve had a lot of ups-and-downs but I’m back to living normal life for the most part with a few dizzy spells per month. I took Venlafaxine for about 3 months and gradually bumped up to 150 mg over the course of about a year. I additionally now take Klonopin for acute dizziness attacks.
I felt like that when I was suffering at my worse, but the knowledge that this is a treatable condition kept me going.
The blood thinners are interesting – have you seen a hematologist or been tested for antiphospholipid antibody syndrome?
I’m glad to hear you are doing much better now I bet it feels amazing to have your life mostly back.
I jusr feel like this is something really wrong with my brain. It’s been consistent every day for almost 3 years with sudden worsening. I pray there is some sort of treatment to help. I’ve tried so much like betahistine, prochlorperazine, Cinnarizine nothing touched it until the blood thinners.
Was diagnosed with Antiphospholipid syndrome after many positive blood results for it after the jab. That’s why I was started on blood thinners. I definitely feel that plays a part but I know something else is going on too. It’s really scary.
Normal appearance of the basilar artery, circle of Willis and principle intracranial branches. Atrophic PCOM segments bilaterally. Unremarkable bony cervical spine and images lung apices with no external compression of the posterior circulation.
this is a very common (non clinically significant) finding for one of the blood vessels in your brain. around 30% of the population has it, so it would have nothing to do with what you’re suffering with. it basically just means that one of the vessels is smaller than is typical, but nothing clinically significant
its good that you’re being treated for APS; if that’s been taken care of and your care team is satisfied with the way that your labs are looking, then I wouldn’t worry too much about how that is contributing to your symptoms. It might be a contributing factor (of many) to any vestibular disorder, but they probably need to be separately treated.
I’m not a doctor, but what I would do if I was in your shoes would be :
Get on the phone on monday to schedule an appointment with a vestibular neurologist, ENT, neuroENT, etc. Depending on where you are, I could suggest Michael Teixido in Delaware
Start on the migraine supplements (can’t hurt, can only help if migraine is indeed what you’re dealing with)
maybe start a conversation with your GP about anxiety and depression. It is difficult to deal with this disease and I was diagnosed with an anxiety disorder because of having to deal with this myself. Taking care of yourself mentally is super important. This could be in the form of medication/counseling whatever. Just make sure you’re taken care of.
Really? Thank you for clarifying that. It’s hard to believe my scans come back normal yet I suffer this badly. I am actively looking for a new neurologist. In your opinion do you think a neurologist is the best route to go?
I really do appreciate your responses and help, you seem to have a lot of knowledge.
Thank you. My GP is calling me on Wednesday morning to discuss a referral letter. I had already enquired with a different neurologist privately but they need a referral letter first. Really hope they can come up with something as this is torture & scary. Thank you for your help and kind words today.
Clair-rose. Dear heart, hang on and don’t give up hope. Many of us have had a challenging time finding a way to manage our condition but eventually come back to some sort of normalcy. Maybe not 100%, maybe not all the time, but in the end we get our lives back and you will too. As others have said, the keys are to finding the right medical practitioner(s) and (most likely) medications. It’s almost always a case of trial and error so tenacity and patience are critical to success.
For me I didn’t start to improve until I found a neurotologist who specialized in vestibular disorders, and I’m currently treated by a neurologist who specializes in headache disorders. These highly specialized people are hard to find and tough to get an appointment with but my advice is to do whatever you have to do to make it happen. Even if you need to travel or do a remote consultation, consider doing it to get an accurate diagnosis.
While you’re working on that, here are a couple of websites that have helped me immensely over the many years I’ve been dealing with this dreadful disorder. VEDA has a great deal of information, including a list of practitioners who specialize in vestibular disorders. And if you call them they will speak with you, which is a wonderful service.
Dr. Timothy Hain is one of the leading researchers on dizziness, imbalance, vestibular dysfunction, etc. and has a website jam-packed with information. The website is not sophisticated but don’t let that put you off – Dr. Hain is an international leader on this topic. I hope this helps.
I would like to add that VEDA contains a great deal of practitioners that are not Medically Trained (PT’s, other types of non-clinical providers). Be careful that you’re only seeing people with MD or DO after their names
Hello. I have massive sympathy for you. I have been bedridden with Vestibular migraines happening almost daily, including vomiting and nystagmus (eyes rapidly moving and unable to focus). My Neuro described it like my brain having a massive electrical storm. They started in April 2023 and steadily got worse until I ended up i hospital. hellish experience. Long story short, I got massive help from amitriptyline built up gradually to 30mg, and almost got my life back, but then for some reason it stopped working and I was as bad or worse than ever. after much prayer I found a chiropractor who is also a functional neurologist and he has very rapidly get me off my meds and back to myself. it’s a miracle. using diagnostic eye assessments he knew which eye exercises to give me and within about four weeks the vertigo has stopped. also the totally overwhelmed feeling and brain pressure etx.
Thank you for your reply and advice, will check out the websites. I will definitely be trying to get an appointment with a be specialist as soon as everywhere is back open again. I really hope there is something that can help me, it’s impossible to live like this.
Glad to hear you are feeling better & I hope that continues for you
Hello, thank you. I am so glad to hear you are feeling much better now, I really hope there will be someone & something that can help me. It’s so hard. Thats amazing you were able to improve even without meds, I hope it continues for you
thanks Clair. it is an absolute miracle. Do you have any functional neurologists nearby. This one was advertising RightEye test he does, which I actually scored alright with, then he did a vestibular assessment on me. He did this by putting on some black goggles so I couldn’t see anything at all, but they could see what was happening to my eyes. they were constantly drifting to the left and also one pupil was bigger than the other. from this test he knew which brain exercises to give me to counteract the weak areas of my brain. He is also improving my posture with regular thrice weekly appointments, which is very key for balancing the central nervous system. mine was completely out of whack and I have multiple systemic problems, which I am hoping will improve with his treatments. Hope you find someone to help. I have been down so many different routes and this is definitely the most successful.