Hi all! I'm Amy and I have not yet posted an introduction on here, but I had a quick question - so this post is a two-for-one I guess. Quick background...I was diagnosed 5 years ago (I was 30 at the time), my MD wasn't bad then (only one vertigo attack ever), just a lot of tinnitus and fullness. It actually went into natural remission shortly after that when I was pregnant and nursing for the next few years. I'm not sure if my remission was related to those events, but during that time I had no signs of it. Then in the fall of 2017 it came back with a vengeance. I was having daily attacks, tinnitus, the whole thing... I immediately went on a low salt diet, diuretic and was able to manage it for a while. Then in the fall of last year it got really bad again so I tried the Dex shots (no luck) and eventually the ESD surgery on February 1st. On March 17th I had the biggest vertigo attack I've ever had. Five hours of awful spinning, vomiting, totally unable to function, etc. that was followed by an attack every day until the 23rd. So, as it seems the surgery didn't work. I found this site (y'all are AMAZING by the way!) in an effort to find some relief that was not a destructive procedure. I was all set up with my ENT to schedule the VNS surgery but I decided I want to try some of the things posted here before I go that route. Currently I'm doing the JOH and B5/B6 regimens simultaneously. I have not had an attack since the 23rd, but it hasn't been a straight line. I've definitely had times where I've experienced 'mild' attacks or general imbalance, brain fog, etc. I'm journaling to (hopefully) find my trigger(s) and keeping on the regimens for a longer period of time. Which finally brings me to my question... Has anyone tried/heard of Phosphatidylserine? I initially started the old JOH routine by accident and the guy at the vitamin shoppe suggested I try Phosphatidylserine in lieu of the Cocculus Compositum, which he didn't carry. I now know that the updated JOH regimen does not have CC in it, but I didn't know if there was harm in taking the Phosphatidylserine - as it says it's meant to help with exactly 'brain fog.' I thought it was interesting that CC was dropped from the regimen and nothing was put in its place as a substitute, why was that? Was it just not needed or was a suitable substitute not found? Just wondering as I figure all of this out! Thank you to everyone who keeps this board going. If it wasn't for y'all I'd be scheduled for a scary surgery right now! (Which I might do in the future, but this way I know I've at least tried EVERYTHING else possible first!) I'll update back in a few days/weeks as to how the B5/B6 and JOH is going. Thanks all!
I don’t have any info about that supplement but I just wanted to say I also got pregnant about 4-5 months after the sudden onset of my Menieres symptoms. I actually had an IUD removed, thinking it was maybe causing some of the symptoms, and wouldn’t you know it, our third and final baby — a real surprise — came out of the fact I had this otherwise terrible affliction. Although I had worse morning sickness with him than I did with my older two kids, my Menieres symptoms all but went away for the duration of my pregnancy and until he weaned around 15 months old. Then it came back with a vengeance. I did a ton of reading back then and it seems that for women like us — mid-late 30s at that time - this is not unusual. I’m convinced for some people, there’s a hormonal issue at play here. Not the CAUSE of Menieres but a factor at play. In addition, MAV can be a dual diagnosis and can often flare up on pre and peri menopausal women.
PleaseNoDizzy - that's SO interesting. I agree, I think there is a hormonal component at work too. It's possibly just exaggerating the symptoms (agreed, it's probably not a cause) but I definitely think there's a connection. As it turns out, although I'm only 35, I am going through menopause (ugh) and my MD has come back full-force. So it's interesting you note that. I am going to ask my OB about going on hormones to try and lessen the effects of the menopause symptoms, maybe it will do the same with my MD. In your research, did you come across any information about that?
I don't know about hormone replacement as I'm not there yet, but this is what I do know. I was 37 when Meniere's started suddenly and I'm 45 now. I had a laby last summer and shortly after, I finally went off the BCP I'd been on, on and off for a very long time (aside from when I had the IUD and obvs pregnant and nursing). Since going off the BCP, my cycles have been... like clockwork in timing but generally speaking out-of-whack. This weirdness has also coincided with a flare of symptoms that are almost definitely MAV related. I decided this week to go back on BCP (which is so silly due to my age and since I had tubes tied when the surprise was born) but I need to see if this will fix both the cycle issue AND the likely MAV. I am resisting going on migraine meds but will if this doesn't work. My mom didn't start menopause until much much older so I don't think this is even the peri stuff yet.
That's so interesting. I went on a 'trial' period of the hormone replacements last summer to see how my body would react and it went well - I also had NO Menieres symptoms at the time either (something I just realized a few weeks ago). I got off the hormones because I was (and still kind of am) afraid of the side effects like a heightened risk of breast cancer, etc. But I now realize that it could lessen both my Menieres AND menopause symptoms, so I'm willing to give it another go. I should also note that when I was undergoing fertility treatments two years ago, and injecting myself daily with an overdose of hormones, I also had no Menieres symptoms. The only times in the last five years that I've been free of symptoms have been when I was pregnant/nursing, on fertility treatments, or on hormone replacement therapy. I definitely think there is a connection. Let me know how your BCP works, I'm super curious! Good luck!
Welcome Amy just wanted to say hello lots of good information and support here. Unfortunately I don’t have any information about that supplement.