wish I could help you there james but none of my docs/consultants were helpful and none of them really said much at all, just gave me meds and everytime I went they upped my dose! poor tale really!
After two years of searching for answers and a lot of doctors who said it was all stress and burn out, my GP told me two weeks ago that I am very very ill. And although you do not want to hear that from a doctor, it gave me the greatest relieve! He also said we are going to try everything we need to make me better! Yiheah for my GP!
Sadly, can’t add to this either! I’ve been trying to recall, and can’t remember a single positive thing I have ever been given to take away!! Not even meds! Pretty much all I have learned is from experience and personal research, putting 2 + 2 together and coming up with 6! I do believe that time is the biggest answer…though not always what one wants to hear!!!
Hoping to hear some more positive responses!!! - we can all learn from one another.
BIG yay for your GP!! At least someone is taking your plight seriously!!! Holding thumbs that he soon comes up with the answer to make you better!
I am having a hard time to believe that everything can eventually heal again! I really do hope so ofcourse…getting my life back seems so far away now. But he probably knows by experience what he is saying!
I’m right there with you mellybob. I’ve had very little encouragement from any of the doctors or specialists I’ve seen…and I’ve seen a lot. Most seem to be totally confused with any type of migraine except the bang bang pounding in your head kind. They seem clueless that there’s a correlation between the daily dizziness/lightheaded symptoms and migraine disorder. Every doctor I’ve seen just tries a new medicine hoping it helps, but it feels more like they really just don’t know what to do for me. After reading so many posts on this website, I feel like the US is very behind in understanding this condition. Those of you abroad sound like you’re finding doctors who actually get it. I would welcome some encouragement, but after 2 almost 11 years of this I’m growing weary.
That should have said after 2 months shy of 11 years of this.
Hi all, my cousin is a GP and she told me MAV has only just started to be recognised as a condition in itself in the U.K. when I told her of the struggles I’ve had with doctors over the years she says it’s because they don’t have any knowledge of the condition. She just received some training on it a few months ago but had never heard of it before. So hopefully knowledge will be spread and doctors will be better equipped at diagnosing MAV in the future
Hi There T,
Read the post I just put up in response to mellybob “out and about questions”.
I can’t imagine that multiple folks haven’t addressed the VOR thing, so maybe it is redundant. But I dont’ recalll seeing it at any time on this site over the year or so I have been reading/lurking.
I can’t say that the rehab avenue will make me better - I just started it a few weeks ago. But they are very knowledgable and positive in dealing with neuro/balance issues…try getting that from your doctor - HAH!
And it seems logical - treat the symptoms to rehab the system…rehabituation.
And hopefully able to help! Fingers crossed!!!
I asked Dr S if I would eventually make a full recovery.
He replied: “I can’t guarantee it but yes, why not. If you don’t have peripheral damage, the brain is a plastic organ and can heal itself”.
And there’s the rub though in that statement … Secondary Hydrops definitely suggests some peripheral upset (though it might simply be temporary imbalance of fluids) … so for the SEH folks here (@NYGAL @GetBetter(?), @Young_Lee amongst others) it would be nice to know the natural history of that …
What healing is that exactly?
FWIW the pressure in my ear has steadily been decreasing judging by a reduction in the worst of my tinnitus episodes and less distortion when listening to loud sounds, plus some other markers … so I have a feeling SEH does decline with time … one salty water molecule at a time, though, probably
I’ve mostly compensated (no meds yet no more migraines, yay!), so brain has done a great job of dealing, so he’s bang on on that … keep your hopes up guys!
I haven’t received much in the helpful department from any of the many doctors I’ve seen. The best I can think of is one doctor who told me that it can take months for the brain to heal after a vertigo attack. This was helpful in that it made me understand why I would continue to feel so terrible after the worst of the vertigo was over. Also helpful in that he said eventually it should heal.
But for all the points he scored in saying this he lost them when he wrote a letter to my doctor saying I suffered from imbalance and had no symptoms of meniere’s disease!!! What the heck, while I don’t want to have meniere’s, I think my symptoms of severe, hours long vertigo attacks in which I couldn’t move an inch to save my life are more symptomatic of meniere’s than “imbalance.” And this was coming from the highly regarded neurotologist in my area.
My Neuro said (based on my symptoms and response to steroids) this is all about inflammation. I’m taking the preventative med, but she advised that I do all I can to decrease inflammation (lose weight, probiotics, proper sleep, low glycemic diet, and taking anti inflammatory meds occasionally.) I also have fibromyalgia.
I follow an anti-inflammatory diet. It’s made a huge positive difference in my MAV and several other medical issues.
Forgive me if this has been discussed in another thread. I had my annual physical exam last week with my primary care doctor. We were discussing something (not related to my vertigo) and she mentioned that there is some solid science behind turmeric having anti-inflammatory properties. She said that it has to be combined with black pepper to be effective and that they sell capsules containing both at Costco. Has anyone tried it and had success (again, not for MAV/vertigo but for anything where an anti-inflammatory might help)?
Yes. Not me personally but my (favourite) sister-in-law takes it for arthritic pain. Takes it all the time. Has done for years and swears by it. Considerably reduces her need for prescription pain killers it seems. Says it’s wonderful stuff. She has had bad arthritis for decades now. She persuaded my husband to take it. He’s suddenly developed quite severe arthritis very suddenly. Well he filled the medicine cupboard at home with turmeric tablets. Never taken one as yet as far as I am aware. Knowing his track record for taking pills it doesn’t surprise me. I always said if he’d had to take the contraceptive pill instead of me we would have had at least one football team of children if not more. I think you need quite high dosage to be effective and it takes time to work. It is contraindicated with some other meds and you would have to come off it some time prior to undergoing any surgery so assume it has an affect on bleeding or something. I don’t think my sister-in-law mentioned a black pepper connection. If you want I can text her to find out. Do remember when she first had success with it she was so excited she gave me literature all about it to read but we were both healthy then. Aaa! and didn’t need it. Aaaa! Those happy far-off days of yore.
That is hilarious. And so true.
And I keep telling him they won’t do him any good in the cupboard. He needs to take them. I dread him buying pills. He’s done the same with cod liver oil tablets several times, gets the slightest cold and stocks up on cough sweets he never takes. I’m beginning to think he just likes the pretty lables!