I had a serious setback day before yesterday. I've been down to 1 800MG acyclovir a day for a couple months. Then, over the last 5 days, I started to get some fullness and additional tinnitus in my bad ear. I didn't think much of it, it's been a while since I had an attack. Then WHAM!! Out of no where, day before yesterday while I was at work, the room starts spinning. It's been months since I had a full blown meniere's attack. I'd forgotten how shitty they can be. So I'm obviously going up to 2 800MG pills a day and upping my lysine dose and a couple other odds and ends. But I had a question I wanted to ask you guys. Are you afraid of your disease? I find myself paralyzed with fear of this damn disease sometimes. I hyper analyze every single dizzy feeling and wonder if it's the next attack. I had a point 6 months ago or so, where I lost my fear of what this disease could do to me. In part because I hadn't had an attack in a while. But I just wondered, what do you do, how do you cope, so that you can still live the life you have and not be afraid all the time of the next time this damn disease bites you in the ass?
Once a Menarian has experienced one of those "it came from nowhere" vertigo attacks, the odds are high that that person will have major anxiety about getting caught again. Even for the prepared, vertigo attacks are a traumatic experience. No control over what is going on in our heads and bodies, and the torture of an extended vomiting session abuses the hell out of the body. It's almost like the Meniere's monster says: "Yeah Mick...you've been good and taken all your meds, etc. BUT, just to remind you whose Boss I'm going to take your brain and spin it around for a few hours just to watch you puke your guts out every time you flinch." There is no control over it..vertigo can come at any time, without warning. Hell yes I'm afraid of it...and there's not much left in this world I am afraid of.
Yes, I've still got some PTSD from it, even though I'm almost one year free from attacks. I use CBT techniques to fight that.
Hi Vitolony, drugs like Xanax become your best friend. I carry a pill bottle with me filled to the top with my little pink friends. I've had this shit going on over 20yrs and I'm still here and productive. I also smoke weed at night to relax and to make me feel less nauseous than I do during the day. I avoid alcohol as much as possible, because it seems to make things worse. I swim every day, because exercise is important and its the only type of exercise that does not take balance. Even though I was diagnosed with Menierse 20yrs ago, I still have no idea as to what is really wrong with me, nor do I try to get answers anymore. I just try and live my life to the fullest as best as I can. I actually woke up today feeling really dizzy for the first time in a long time, different than my everyday shitty feeling. I think it is weather related, but who knows. I also suffer from severe TMJ on the same side as my bad ear. It sucks, but my advice is to not let it control you. The key is to control the symptoms and to become socially active in a club or some type of activity that will give you something to look forward to every week, that is NOT health related.
Terrified! I got into an early apt with my oto yesterday, just to have him say the same old stuff, i.e., fluid in ear, prescribing triamterene and valium. I am anxious to take the valium and have not yet started it. I'm sitting here trying to type, trying to stay focused while vertigo is setting in. I'm having a hard time concentrating including difficulty remembering the names of simple things. Hopefully it will not be a bad one. What do you all do about work? I have been home since Monday - afraid to drive alone and be in a public place with no privacy an hour away from home. I promised some students that I would meet with them and help them today but now I'm not sure that I can do that. I need to drive (a lot) and of course work. When I expressed my fear of having an attack in public to my doc, he said that it's going to happen. This fear is debilitating.
Be careful with the valium, and any other benzo. They are extremely addictive if you take them regularly. Some folks say, "Who cares about addiction... i need them like a diabetic needs insulin." Fair enough, but diabetics don't get tolerance withdrawal from insulin when it stops working at the doses they are taking. Anyone starting benzos would be well advised to browse this message board first: http://www.benzobuddies.org/forum/index.php Valium is great if you take it when you need it (not daily).
Well, that wasn't exactly what I had hoped for! lol I was hoping you guys would have lots of advice about how to live free of fear of this disease. I was watching "After Earth", the Will Smith futuristic sci-fi flick last night. He says something interesting at one point during the movie. He says... "Fear is not real. The only place fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present, and may not ever exist. That is near insanity. Danger is very real, but fear, fear is a choice. We are all telling ourselves a story, and that day mine changed." I want to believe that I can live free of fear of this disease. That last attack was no where near as severe as they were during my dark days prior to finding the herpes hypothesis of our disease and treating mine as such. So that is something. The bigger problem was that I was also alone. My wife having decided she's done dealing with me and my disease. I was more afraid of being alone while having an attack than I was of just having an attack. But... I lived through it. I've often lamented the fact that this disease can't kill us. But that is also something to remember. It can't kill us. After all that I've been through, I'm still here. A little worse off for wear, but I'm still here. Here's to many dizzy free days in the future.
I used to be very afraid of vertigo in public or at work, which was public. I let it stifle me. I didn't go to events, social occasions, tried to get hours reduced at work. I was a mess, constantly fearful, just wanted to live in my cosy little cave and spin and vomit in private. A very good friend gave me some gentle advice that has helped me tremendously. She told me I was always refusing to go have fun because "what if I have a vertigo attack?" Her reply was "what if you dont, then you will have missed out on fun for nothing. What if you do? So what?" I know easy for her to say, but really, what if we do have vertigo in public? It will end, we will get home and the sun will come up tomorrow. It is hard work to fight that fear and not everyone has the same coping skills, nor the same circumstances. I have had vertigo in public. It's not fun. I had someone call me a disgusting drunk because I was sitting on a curb vomiting. It was not pleasant, but at the end of the day, it really doesn't matter. I was out living my life, doing what I wanted and eventually it was over. My hiatus from vertigo appears to be over, so I will be put to the test again to see if I can walk the talk. ☺
anxiety and panic disorders are extremely common with people with vestibular issues. I read a book by a doctor who believes anyone who has panic/anxiety attacks is because it stems from a balance problem. This is the book called Phobia Free: A Medical Breakthrough Linking 90% of All Phobias and Panic Attacks to a Hidden Physical Problem by Harold N., M.D. Levinson (Author), Steven Carter (Author) http://www.amazon.com/Phobia-Free-Medical-Breakthrough-Physical/dp/1567313183 Many papers and studies have been done about the quality of life and emotional toll Meniere's takes on patients.
Well after not posting here for a very long time, I must have jinxed myself by replying to this tread. I have been house bound all day for the first time in years with BPV and it has been a sucky day. I cant believe how bad it is to spin as bad as I have today. Talk about weird timing. I'm starting to feel a little better, but I have spent hours staring at the TV not trying to move my head or even walk. I think I might go back into the wood work now and come back next year. Also weed made it worse and two Xanax did nothing, until now. Could be our weather, but who knows. It may be time for another CT scan.
I really don't know, but I know people who have got relief. I have lost faith in doctors, to be quite honest. I hate waiting, then getting the same song and dance and being charged for nothing. I really think I cursed myself by visiting you very kind folks to be honest. LOL
If you are sure its BPPV you can do the epley at home. That's how I got rid of mine. It never stuck when doctors did it for me. But if you are not sure its BPPV I would not try the epley.
BPPV Benign Positional vertigo happens when the crystals inside the ear get dislodged and causes vertigo wne your head is turned in a certain position and as soon as you move your head out of that position the vertigo stops. Although I had BPPV several times and one time I could barely move my head w/o causing vertigo. The epley maneuver is a simple maneuver that puts the crystals back in place.
I'm afraid but confused . I get very dizzy Spells ( each time when thyroid is too high or too Low)I don't know if its mild vertigo bc my Dizziness is bad with any movement. seeing What I've read that's a piece of cake compared to Most of you here. But even if I swallow my head feels like its Rolling back . What is that??? Does anyone Else get that?
I am not "afraid" and I don't live in fear - but I would be lying if I said I don't get anxious over having attacks at work- which have happened and which I have had to have co-workers drive me home while I am spinning and vomiting into a bag in the passenger seat and have them practically carry me up my stairs to my house ( still vomiting into my bag) and literally put me to bed -- SO freaking embarrassing - all while my dogs are barking and jumping all over us ..... and then of course as I am aplogizing and trying to thank them I am still vomiting because I am trying to lay down because I am so exhausted- but still spinning - and then spinning while trying to make it to the bathroom - carrying my bag beacuse i am puking on my way to the toilet - or puking beacuse i have diarrehea too..... That all SUCKS. So - I take valium when I start to feel a dizzy and or anxious - I am prescribed 3 a day of 5 mg - but I really only try to take it once a day at night to lessen the tinnitus --- However admittedly I've taken it up to 5 times a day on a bad day-- so it really all depends on how I am feeling that day.... when I think I can go without -I do. BUT - I do not let it control me.... I still go out and have fun - I go to concerts with a special custom made ear plug for my right ear from my ENT.... I just make sure that I try to get enough rest the next day.... Music is so important in my life... so if I know I have a concert coming up I am extra vigilant with my self-care and sodium intake several days prior. I get the occasional decadron shot and after a few days of feeling crappy I ususally feel pretty good for about 4 months. Don't let the disease control you - you control it when you can.
I wouldn't use the word "afraid" as much as the fact that it is always in the back of my mind. There is always that niggle of anxiety of IF I may go dizzy. I carry the Ativan in my purse to put under my tongue if the world starts to spin. That will shorten the attack but that is the best I can do.
I lived in fear of the next attack most of my life. I am more relaxed about it now since having no symptoms for 3 years, but now and then if I do get a dizzy type feeling even if its not a prelude to vertigo, due to my MAV by getting close to my threshold, or sinusitis, or my blood sugar being too low etc. I get scared and my heart starts pound. All the old fears come rushing back to me. I don't think I will ever stop feeling this way, after having this fear for 50 years. It has been an obstacle in my entire life and dictated the course of it completely.