It's been awhile since I last posted here. Like so many others, once I was feeling better I have not visited this site multiple times a day like I was six months ago when I first found this forum. However today my little world of denial came crashing down. I had my first ever drop attack (though I've suffered with Meniere's since the mid 90s-with remission until the spring of 2016) this afternoon while attending my grandson's baseball game. This totally unexpected surprise came over me in an instant. Fortunately I was near family so I was well tended to. The frustrating part is that for the last two month I was beginning to feel I had obtained control of this monster. I have been on the high dosages of VAL since Feb 21 of this year, along with the full regimen of JOH> I had my share of ups and downs the first four months, but these last two months have been pretty wonderful, feeling like I had gotten my life back. My plan all along was to do a full 6 months of this approach. Sticking to the plan, watching my diet, etc. Yet about the DAY I hit the 6 month mark (Aug21) I had an "off" day. Nothing drastic,but definitely noticeable. This "off" feeling hit again the next day and each day since. Not lasting long each day, but it was there. All morning today I felt good until this afternoon when all hell broke loose. Thankfully I didnt have vomiting and diarrhea that usually accompanies an attack of this magnitude for me. The scared part is that I'm back to square one and that I dont know what to do now. The confused part is that during these last two months of feeling great, I've dealt with tremendous stress and pressure with selling/packing/moving from our home in MD, even to include coming back to MD for a month's time. All of this involved both road trip and flying. I got thru all of this process basically unscathed by my illness. I relate this because in the past stress has been a trigger for me. But here I am, with the stress gone and life looking good, until today. I am trying my best to keep this all in perspective, but I"m finding my fears are once again taking me to the place I was 6 months ago. LIke I said earlier I dont know what to do. I am hoping someone can help me better understand what might be happening.
Stress doesn't work like that. It builds up, piles up, and often hits you after the stressful period seems to be over. It's your body telling you that it's done its job and now needs recovery time. Think soldiers who go through hell and then crash mentally after coming home. You are not back to square one. Don't panic. Stay the course, reduce your stress, take some time to relax. Also make sure your diet is good (low arginine) and maybe bump back up to max Valtrex and lysine for a few weeks. You are suppressing a virus, and that virus is not dead. It feeds on stress and might have sprung back up temporarily. Knock it back down. And don't let the anxiety feed it either.
Scott Tom, I dont think I've really let you know how much I appreciate your inputs on this forum. You are always "there" for those of us who look for answers/support and understanding. And unlike many of us who become less dedicated to this site when we are feeling better, you seem vigilant and ever ready to participate and offer words to help calm the stormy seas, even though you yourself have been able to get on the other side of this "thing". So A BIG THANK YOU from me to you. I wondered at the beginning of the week if it was post stress release that was affecting me, since I couldnt determine anything unusual otherwise from what I had been doing these past six months. When this "off" week started I decided NOT lower the VAL dosage, so I continued with the high doses and of course to stick with my JOH routine. Usually I have a warning when things start to go south, but yesterday it hit totally without warning and it hit hard. And though the intensity of the episode passed within a few minutes, the remnants linger even a bit into today. This week I also noticed a lot of sinus related symptoms (drainage etc) so I wondered about allergies....again just trying to determine what might be the underlying trigger. Is there any down side to staying on the high dosage for months on end?? I really dont want to switch types if I dont have to do so. I know this medication and it really has helped me. As is our situation, we look for answers and solutions to the many questions we all have. I was really enjoying having my life back and feeling confident to be independent again. So I will heed your advice and see how things settle out. Conquering the fear is a tough one, but I will try my best to keep a positive thought/hope to be back on track and that one day I might also "be on the other side" and in control of my demon.
If it passed quickly, then that could be seen as a positive sign! Keep in mind that the after-effects could be due to the anxiety and stress of the event. Also, you might be fighting a cold, or allergies, which can cause similar feelings. I feel horrid when i get a cold because our ears just don't handle it as well as normal people. Dr. Gacek said that the only side effect he's ever seen from long-term AV use is gastritis. But keep checking your kidney and liver levels every six months to make sure they are not affected. Best of luck!
although I can't. understand why we have certain symptoms of this disease, I do want to say that I hope that you get back to feeling well soon.
forevergrateful, this might not be as scary as you have once thought. Looks like it is not typical mainstream attack of Meniere's disease but is more like BPPV. The exact cause of BPPV is not known, but we do know the mechanism and cure. With BPPV, the intensity of the episodes will pass within a few minutes, but the episodes will remain until the "thing" that causes the episode goes away. You can do exercises in my document, or search by Epley's maneuver to conduct a home therapy. Epley's maneuver or other types of specific maneuver works for specific one of three semicircular tubes that the debris/ear stone entered. The exercises in my document works for all three cases. https://drive.google.com/file/d/0B4smSaYBVJ9gaXN6aVJiRHRFUXM/view?usp=sharing
Hiro...thank you for your inputs...I am very familiar with BPPV, having had several Epley's performed in the last 1+ years. If it was BPPV, it cleared on it's on by the time I was able to lay down (about 2hrs after the event since I was at a baseball game away from home). No signs of my typical BPPV, though it did occur as I turned my head to talk with our daughter. I had been standing for several minutes so it wasnt as I changed positions. I"m still hoping it and it's remnants pass quickly and i will resume feeling great again. https://drive.google.com/file/d/0B4smSaYBVJ9gaXN6aVJiRHRFUXM/view?usp=sharing
I'm sorry ForeEverGrateful. I'm sure you're aware of all the varied methods, procedures, surgeries out there. It's good you posted your issues. Every new bit of experiential info is helpful to others. You provided good, coherent detail.