Hi everyone, I’ve been doing fairly well for the past 6 weeks. Feeling 90-95% most days. I was starting to wonder if I finally was getting better. I was feeling really great, then the other day, I started to feel off balance again. Not a great deal but enough to make me feel spacey. Then, that night I got a little vertigo. I managed to sleep through most of it and woke up feeling fairly well. No hangover. Usually my vertigo attack hangovers can last a week or longer and I feel off balance for that long too.
Since I still haven’t been DX’d with anything including MAV, I still constantly google my symptoms and worry a lot. I try not to do it but its hard when you don’t have answer. I’m still waiting until April 20th when I can see the neurologist.
I wanted to ask about others experience with vertigo. Sometimes, I feel like my vertigo is in my eyes. Like its my eyes moving? Especially at night when I lay down. I feel like I’m being pulled to one side or that I’m suddenly extremely heavy and being pulled to the ground. Does anyone else get this?
I also woke up with a headache today and an extremely stiff neck. I keep worrying that I have a brain tumor. I had a CT scan back in November and 3 doctors told me it ruled out a brain tumor. I just can’t help but think they missed something.
I’m trying so hard not to get drawn back into the anxiety and worry. I’ve been so positive the last 6 weeks. Its just hard when all of this is happening.
Carrie, don’t worry too much, it happens. Time and again I’ve felt much better then been hit with a relapse.
If you want my opinion it’s very unlikely you have a tumour. They are pretty easy to spot but surprised you had a CT, they can normally rule them out with an MRI which is less invasive.
You should try to stop googling at some point as that can send anxiety through the roof. I know. I’ve been there.
Do not judge improvement by relapses.
If you want my frank opinion I think the underlying pathology of this thing is probably air bubbles in the labyrinth or something. It would explain the randomness and the relapses. Imagine, air bubbles! Just imagine those dissolving over time and your inner ear fluid slowly returning to its normal pure fluid state. Calmer now?
I’m definitely getting better but very very slowly. You may find this yourself.
What med are you on if any?
Thank you for the reassurance. Sometimes, its all I need just to continue pushing through.
I’ve always had this fear of a brain tumor since this whole thing started for me. I was surprised they gave me a CT scan too.
I’m not on any medications right now. I have zofran and meclazine in case my vertigo gets really bad but I’ve only taken them on two occasions and decided they weren’t for me. Those drugs seemed to prolong my symptoms when I have an attack.
My primary care doctor was very dismissive of my symptoms and told me I had anxiety. My ENT told me that everything was fine with my ears (after my eng test came back normal) except the constant fluid. He offered to put tubes in my ears but said it would be better to just deal without surgery (since I’ve had tubes in my ears 4 times in the past) He then also gave me a referral to a neurologist because he seemed convinced my symptoms were a migraine disorder.
James, thanks for you for always taking the time to respond to my posts! I really appreciate it.
No problem. Ear trouble is blumin awful. Wow you are doing so well coping without meds!
When you say ear fluid what do you mean?
Yes it is! I’ve suffered with ear trouble since birth. By ear fluid–I mean I have constant fluid in my middle ear. My ear drum is constantly retracted. It makes it hard for me to hear people’s voices. The fluid can fluctuate too. Sometimes, its much worse than other times.
Have you had an explanation on what that is?
I’m calling ENT out on the bullshit that is ‘migraine disorder’. Migraines are completely healthy reactions to upset ears.
I think this whole thing started with my ears too!
He didn’t offer any explanation but did prescribe me an antihistamine for allergies.
I think the most frustrating this is how dismissive most of the doctors that I have seen have been. When I started to ask him about the visual symptoms (especially the jumpy eyes) he just waved his hand and told me to ask the neurologist. When I asked my opthamologist about my visual symptoms she told me to ask my ENT. Its so frustrating.
Certain eye symptoms are almost certainly down to inner ear trouble. There is a kind of muscle memory between the two organs and when there is disturbance in the inner ear you get nystagmus. You can apparently temporarily dampen this link chemically with anti depressants. Amitriptyline works a treat to reduce nystagmus. This helps block migraines and avoids nausea.
That fluid deserves a better explanation. Have you been checked for otitis media and/or a fistula? If not discuss those with a GOOD ear surgeon.
James do you take Amitriptyline?
Yes I do, 20mg nightly, an excellent med for MAV if you react well to it.
I’m going to look into this medication! I googled it and it seems like it might help me with some other things as well. Do you have any side effects? I’m sure the benefits outweigh them but I’m just curious!
I took many anti-depressants for 15 years. I hated the side effects. It was one of the reasons that I decided to stop. Its been almost 3 years now.
Dry mouth (intially), vivid dreams (initially), drowsiness (much worse initially) and mild constipation. The side effects are so minimal compared to the symptoms it’s helped me avoid:
- rocking and visual hallucinations
- nausea (save a two week period of sneak through)
- soft ground feeling
It also helped reduce my anxiety either directly or indirectly. And vertigo is much less intense.
I’m told it’s a much easier antidepressant to tolerate and come off than SSRI’s (eg Celexa etc)