I've been dealing with dizziness related symptoms for quite some time now. I've gone to an optometrist, ENT,l and a neurologist. I've also had an MRI, eeg, ekg, vng testing, and all replace the blood work done, all of which hav come back normal. Currently I live in buffalo ny, and I've seen every neurologist in my area, I've also traveled to the Cleveland clinic and saw dr. Cherian. All of which cannot find anything of particular interest to diagnose me with. I'm currently at a loss as to what my next move should be. I don't really know what other avenues to follow to try and figure this thing out. If anyone can lend some guidance I'd appreciate it, I'm willing to travel to anywhere in the continental U.S if someone thinks it may be beneficial. If anyone would like to know further details into my situation please feel free to look at my past posts, as it's far too much detail to post here lol
You say you have been to a Neurologist. Have you seen a Neuro Otologist though? A neurologist wont tell you much about the Vestibular system as they are not trained in it. They are more about brain damage, tumours tec. I saw one in my early days and as nice as she was her testing was minimal! I had to find out myself about Neuro Otoligists (Often wondered why the Neuro never suggested it!) when i eventually saw one their testing is much, much more comprehensive as they are testing your .vest .system, aswell. Just google your area for one and see which hospitals they work out of.
There's neurotologist in Syracuse . A neurologist tried to refer me to ones in Boston. I am currently waiting for a call about a appointment in Syracuse. When I first was told I had bppv it was hard to detect. They where not sure even what ear was effected. A therapist told me after some testing. Now it's alot worse. Testing shows its way worse. VNG showed it's slot worse. You can try vestibular rehab. Or try a neurotologist. They do more testing that may show what others didn't find.
I don't know what to say because I am going threw the same. You have went to more doctors then me so far. I would pray you never know how God will direct you. Did you take any drugs like Gabapentin that drug can cause dizzyness. It can be a withdrawal symtom.
At this point it's getting hard to see the light at the end of the tunnel, I feel like I've done just about everything I can to no avail. I'm starting to believe I'm just stuck like this for life, and I had better learn to deal with it. I've tried reading success stories for people like us, and they are far and few in between... I'm now going on two years dealing with this
I been dealing with it 11 years. Drained bank accounts. No savings. Got worse in August. Can't work. Temporary disability pays almost nothing. Electric company wants there money. Mortgage, etc etc. Wife hit a deer with my car on her way to work Thanksgiving. I have had surgery twice for other problems between. Have had a doc appointment of some kind once or twice a week since May. Sometimes more. And still have no answers. Everytime I go to a new specialist I hope he/she says " I know what's wrong. Here's how to fix it". But so far it's never happened. Even my therapist gave up after 3 visits. Lol. She still calls out of curiosity to see if anyone has figured it out. Just so she knows if she ever runs across it again.
You have been to what I had thought was one of the best in the US. The only other suggestion that I would make would be the Mayo Clinic in Rochester, Minnesota. Truth is, no one knows what is causing the issues for most of us. We spend time, usually needlessly, going from doctor to doctor for an opinion that usually is of little value.
I cannot remember if you mentioned before that you had done some Vestibular Rehibilitation Therapy. Thing is, someone, a medical professional, should be able to tell you whether or not you have vestibular damage. If you have no vestibular deficeit, in my opinion, it would have to be neurological. Some of the symptoms that you discuss certainly lend themselves to being vascular, migraine related. But, there are so many things that cause sensations similar to vestibular issues that it is often times hard to know who to go to. At least at the Mayo Clinic it is multi-specialized and if the first specialist that you see is not the correct one they will refer you to the correct specialist, and it is all at the same facility. I know since I experienced a vestibular issue it doesn't take much to set off my anxiety. Once that happens it is hard to tell what is vestibular and what is anxiety. Anxiety can cause/add to a lot of the same issues as well.
"We spend time, usually needlessly, going from doctor to doctor for an opinion that usually is of little value."
This has been the biggest struggle to overcome. I feel like no one has any idea what is causing these issues.
In regards to anxiety, I absolutely agree. I really can't tell the difference between the two anymore. It's become a giant mess of emotions and symptoms lol
As of this point, I've had numerous doctors tell me they do not believe it is vestibular damage, so I can only assume it is a vascular/neurological issue. Now I just need some way to diagnose that issue
From what I understand is that the only way they determine that is to try the Migraine drugs. If you see improvement then they determine that is the issue. One guy that used to post on here suffered for 6 or 7 years. He finally asked his doctor for Propranolol and Prozac. The combination, according to him, ended his issues. Propranolol is a beta blocker and also treats high blood pressure but, is used for migraine control. Atenolol is supposedly easier on the side effects as a beta blocker, though. Also, topomax and topiramate are used. Thing is they all have dizziness as a side effect. A lot of people have indicated relief with Effexor XR, instead of Lexapro, and topiramate. Sometimes finding the right medication can be just as difficult. It is really sad that the medical profession in the United States has no better handle on this condition than it has. It leads to a lot of frustration and misery for us. It's a sad state that we have to try to glean information from each other to try to help a doctor diagnose but, I guess that fellow sufferers are the only ones that can relate to what we are struggling with, and understand that it is real even when it cannot be seen on a test.
I've been highly interested in something like a calcium channel blocker as I also have slightly high blood pressure. Something like propranolol seems like a viable option.
Are you currently taking medication?
Also, I appreciate your detailed post. You have quite the wealth of knowledge!
I am going to list the things that are wrong with me, and if other people struggle with it, maybe we can come up with a solution. I had back fusion surgery in 2014 L5 S1. I had four disks in my neck that are bad c4,5,6,7. degeneration at the 5,6, level and stonisis. Maybe the dizzy problem can steam from the spine. I think the weather also arrivates it as well. My blood pressure use to be 90 over 70 Now its 115 over 70. My anxiety is higher as well because of this problem. I took gabapentin for 4 months withdraw and that caused dizzyness. Still think it might be from that. It's been two months since I took it last. Do you have spine issues Henry?