Hi everyone, I'm 29 years old and after 7 years of peace, I've had attacks again. I'll try to tell my story as short and coherent as possible, feel free to read, comment or ignore this post! I was diagnosed I think about 8 or 9 years ago, pretty young, but hey, what are you going to do about it, right? Went to see an ENT after someone mentioned I could have M, went a couple of times actually, did a bunch of tests and in the end he "thought" I had M, well actually he said I might have Lermoyez which is some form of M or something, I looked into it 9 years ago, quite alot, but I can't really remember to be honest. Tried all kinds of medication associated with alleveating M symptoms - I refused any type of injection or invasive procedure - nothing seemed to really work. Then he put me on a betablocker and on Diphantoine, which is medication for epilepsy, now till this day I still don't know if it was the medication or that M went into remission by itself, but after a good few years of having attacks it just stopped..I still had my tinnitus and my hearing loss, but I haven't had a single vertigo attack in 7 years, not even a slight feeling of dizziness. And then I did something that I'll probably never do again, I took it for granted, I thought we found the magic cure, back to living the good life, but can you blame one for this? So far the good part. Last year me and my girlfriend bought a house and we're still renovating it, along with all the work and stress it brings along it changed my lifestyle for the worse. I used to work out four to five days a week, eat "somewhat" healthy, overall I was in good shape. Not anymore tho'. Haven't worked out in five months or something, always eating unhealthy etc.. Then this January I got a bad cold (I don't know if this was the trigger combined with everything else), but BAM my first attack in years AND I'm pretty sure it spread to my good ear in which I have tinnitus now too (never had before). I was still on my meds, but maybe my body got used to them I don't know, turns out you shouldn't be as long on those meds as I was anyway, my new ENT was surprised I didn't have any side effects.. Next week I'm getting a hydrops MRI, turns out they have those now to diagnose you with M, they didn't back in the day when I first got it. So yeah, I'm curious to find out.. In the past two months I pretty much had an "attack" every week, usually some minor vertigo that passed after an hour and two full blown attacks. Depending on what the MRI shows I also plan on seeing a dental specialist since I also developped a few TMD symptoms over the years. So for now I'm not on any medication (had to stop the ones I mentioned earlier) I did however start some sort of JoH regimen today which looks like this: - Pycnogenol (quite expensive) - L-Lysine (taking 2.000mg/day, might up it to 3.000) - Garlic supplement (I saw that pianojoe was taking this, did some research and it seemed like a valid addition) For some reason I can't seem to get a hold of lemon bioflavanoids where I live (EU). Which is a shame, maybe I'll try out some citrus ones, but I've read that they don't have the same effect. If anyone has any suggestions of what I might add to my list feel free to mention them. I also adjusted my lifestyle, quit caffeinated drinks, no more soda, mostly water, I do have an occasional glass of alcohol, because I still want to enjoy life and not let this disease dictate my life. I'll try to post some updates for those who are interested, like results of the MRI, maybe a monthly update on how the regimen is going etc.. I am a positive realist that 90% of the time doesn't suffer from stress, so that does help me "cope" with everything, the only thing I "fear" the most is probably going deaf in both ears, but with technology these days..I saw a woman on TV the other day, she was born deaf and she became a (hearing) Neurospecialist..so why should we panic right? Anyways, I guess I'm here in the hopes that I can help other people with their experience, maybe we can find "remedies" together or just have smalltalk about anything, because as a M "sufferer" I've noticed that people don't always show the most understanding when you talk about your problems. I think I've shared my story, feel free to share yours or ask me any question you want. Kind regards, Sam
Look into taking antivirals . Do a search on this forum many people have great success with them. Good Luck !!
I recently relapsed after 6 years. I too would recommend antivirals. They stopped my vertigo in it's tracks. I'm talking about hours long vertigo 2 to 3 times a week. I took Famciclovir. Recently, the vertigo is back, but lasting for 30 second each time. I'm not sure if I have built up a resistance to the Famciclovir, or if it was due to a manufacturer change. Something I'm working on resolving at this time. You can obtain the lemon bioflavonoids from The Vitamin Shoppe. Here is the link: https://www.vitaminshoppe.com/search?search=lemon%20bioflavonoid. Wishing you the very best of luck!!
So you had the beast back in its cage, and were leading a healthy lifestyle. Then after 7 years you stopped leading a healthy lifestyle, and in combination with a time when your immune system was weakened, it escaped to wreak its havoc again. Happenstance and spontaneous remission can confuse cause and effect, but is it possible that a boosted immune system and reverting to the former healthy lifestyle might do the trick?
Don't take for granted the affect the dusty environment renovations generate. Get a respirator and close in work areas to keep them separate from the habitable part of the house. Allergic reactions are a big trigger.
Allergy can be a big factor. So can virus. Sometimes it is not one thing but a perfect storm of several things at once.
All I’ll say, as I don’t want to discourage anyone from trying antivirals, is that they ultimately did NOT work for me, but many people on this forum say they’ve obtained relief. You’ll see on this forum many different things, and combinations of things, that have helped many people. Don’t lose hope, whatever you do! I was young when I developed symptoms too, and then they kicked back up when I was around your age. You’re not alone with that happening. Good luck!