I will stop chatting with āChat/Gemini/Claudeā as this is the only forum where I am finding people that may know what is going on with me. I am 51 female have a previous history of vertigo, but hadnāt had an episode in years. On July 4, sitting in a restaurant after a hot day, I felt like everything was falling of the table and that the room felt weird. I didnāt feel much then and it went away, but we took a flight after that and since I got back to the US around July 7, my vision has been completely distorted. I have āconstant tilted visionā which is when I see the room I feel and see the room constantly left high right low all the time. I have seen ENT, neuro otologist, neuro opthalmology already who have never seen anything like this. They initially thought it was vestibular migraine so put me on topimerate 50 mg and hoped it would go away, but it has been persistent now for 3 months. I am ok outside but now even the phone bothers me - sometimes the left side looks like its coming off the page and even as I type this the letters look slanted now. I have had episodes of high BP this year and cervicogenic headaches (this has been a crazy year with job losses and other personal things). MRI of the brain and orbits was clear. I saw a neurologist finally last week who started me on amitrypline 10 mg last week ā I think its making my phone/computer work even worse. He has never seen this either and is going to do all the vestibular testing on me. I am very down as I donāt know what this is and if it will ever go away and if I will be able to function again ā also the medical costs are adding up with no income currently. I was on HRT when this started but I stopped it as have never had this before. I also have a burning sensation in my nose and was in PT prior that was helping my headaches but now my doctor has said he doesnāt want anyone touching my neck at all. Any advice, support and help would be much appreciated. Any specialists in the US that you know of that can help with this would also be great!
Thank you!
Welcome to the forum! Iām so sorry youāre dealing with such frightening and disruptive visual symptomsābut youāve found a supportive community where everyone is really friendly and eager to help. Many members understand how unsettling it is when the world suddenly seems tilted, slanted, or generally determined to ignore the laws of geometry. Youāre certainly not alone here.
Please take a look at the Welcome Topic if you havenāt already, along with the posting guidelines. Theyāll help you get oriented and make the most of the forum.
Feel free to ask questions, share updates, and read through othersā experiences. While members canāt diagnose you or replace your medical team, youāll likely find understanding, practical suggestions, and plenty of emotional support here. Weāre glad youāve joined us, and we hope the community helps you feel a little less aloneāand that your visual world gradually gets its ālevelā setting back.
Wow, what an ordeal! Have you consulted with a neuro-opthamologist? I think that might be my next step. If you need to find additional resources, let us know where you live and weāll try to make recommendations. Keep pushing for answers, and come here for help and support.
Yes, its good to find real people to work with! Welcome! I have recovered from VM (dizziness). I have also had all kinds of symptoms that nobody has been able to explain. At one point the carpet looked like it was alive and crawling, another point I thought I saw some pink spiders climbing up a wall. My eyes were really jumpy at times, hard to focus (blurred vision). Magneto head - where something felt like it was pulling on my head to the ground in front of me. Electric shock feelings in my head. Icy hot feelings across my whole body. on and onā¦ what were the causes? why nobody else sees pink spiders??? nobody could say. But i was extremely stressed and anxious, that I could say for certain (and probably sleep deprived)! Also stopped working because I could barely function, which added to the stress!
I have a weird one now where my mouth and front neck muscles feel sore and weak, like its too much effort to talk and I did like tons of neck exercises (but I didnāt exerciseā¦) Then, within 1-4 hours the symptom is gone. Was it headache/migraine related? Or something else? I donāt know, but Iām still alive and its been going on for many months now. I dislike the symptom, but it seems to be harmless.
I think you should continue to work with your providers to find a possible cause. But I think you should also work on getting your stress hormones and anxiety down (easier said then done I knowā¦, you have health, personal and financial stressā¦ but so do I and I would tell myself the same). Amitriptyline can help with anxiety a bit, but it may not be the right drug for you. Others here have had good success with Effexor. Another good one, is propranolol (which I take and have good outcomes with). Since you have high BP i thought iād mention it. If you at all suspect migraine though Iād try to stick to the popular meds for that. I tried an SSRI again recently and it really ramped up my migraines and anxiety. But everyone is different and it still may be worth trying an SSRI for you.
Medications aside, we all need to work on the idea of feeling āsafeā. And believe me I know thatās hard to do that with scary symptoms! But we all need to practice itā¦ Seriously we do. I would encourage you to look into the Curable app, which I personally use to help manage these weird symptoms (I have no affiliation with them, I just like the app). Itās based on new chronic pain science (Pain Reprocessing Therapy = PRT) and I wish it was available when I had terrible chronic VM. With my recent symptoms (neck/mouth), I just sort of watch them come on with curiosity (instead of fear) and be with them and notice when they go away. This is called Somatic Tracking and it takes a lot of practice. I also try to notice anything that tends to trigger it and question why its not constant and only āsometimesā. I also reassure myself that Iām āsafeā and whatever it is, its been there for months and hasnāt hurt me in the slightest.
Biofeedback (breathing slow down in the belly) and Counseling has also been very helpful at times.
I hope this helps! Iām not saying your symptoms are all in your head, you may have something structurally wrong in your inner ear or its migraine-related. Keep looking for providers for answers where its logical to do so. But Iām just saying that Iāve had a lot of weird symptoms due to the nervous system freaking out which feels really scary. And in the end if the doctors donāt find anything you need to prepare yourself to work through the nervous system and calming it down to get better. Medications in parallel was key for me, I donāt think I could have recovered without them, but some people certainly can and do.
Iāve recently had anxiety again these past 6 months (with weird symptoms pushing me to anxiety, not the other way around), so believe me I know how hard it is, but I am feeling a lot better now. It will get better! It just takes way longer sometimes than you want it to.