Hi, please allow me to vent. I'm very frustrated and depressed with this...disease? I guess I haven't learned to accept it. Sorry if this is long. Backtrack. A couple of months ago, I was visiting some friends in CA. We went to an antique shop. The shop was a very small one room. Things were piled high and all around. I was looking up and around and turning a lot to take in everything. Started getting dizzy, then bad head pressure. Walked out to go to the car. Felt I couldn't make it, because vertigo feeling started. I sat down in a closed shop door entry way. I had to stay there about 30 minutes with my eyes closed until I could get up again. Fortunately, vertigo did not hit, just the bad dizziness and head pressure. Luckily, it was a small town and not many people walking by. I felt like a homeless person curled up in the doorway. My friends felt helpless. I told them to continue looking around. They stayed about 3 doors down to keep an eye on me. Yesterday, here in my hometown. Went to a large antique store with booths. Found that the small booths were a little too much, so stayed out of them. Still the head pressure got worse just walking and looking around. Then, for lack of a better phrase, head rushes, each getting worse...I was afraid it was leading to a vertigo attack as it had in the past. Sat down for a few minutes. Then decided to leave, not knowing what was going to happen. Today, still feeling the remnants of head pressure, especially when I get up and move around the house. I'm really starting to worry about going anywhere. Fortunately, when bad vertigo attacks have hit (bad meaning sick at both ends and can't move for at least 5 hours and slumped again the wall), I've been home or at a friends place. What do you do when they hit and you are out? There's no time to run to a bathroom if you are at a store or a mall. Thank You for allowing me to vent.
Hey Chris, I had one attack outside the house and was able.to.get home. You bring up.a.interesting point about acceptance. I am not sure I have either after 17 years with many years of remission. I have no.choice but to deal.with it, but acceptance is something else. You will.continue to.fight and you will conquer this disease.
Hi Chris, I feel the same way you do about going anywhere lately. I was traveling a lot for work, but all that has come to an end until I get better. There are a lot of people on this board that are living symptom free. That is what is giving me hope that things will get better with treatment. As of now... I have only had three attacks outside the house and the first ended me up in the ER. I do currently fear going far from my house, but I'm sure as I get better I will gain confidence and I hope you do to.
I felt the same way the first several months after getting diagnosed. I was in an awful period of massive attacks and I just never knew when or where one would hit. I've left the grocery cart full in the middle of the store one time and had my husband come pick me up at work a few times because I didn't feel safe enough to drive. Once you get a handle on it it will be a bit easier and you'll gain some confidence. All you can do is live your life the best you can until you get it under control. It will happen eventually so just hold on to that. Try what you think will work for you ad keep at it until something works. It's different for everyone. Best of luck! You are not alone!
Thank You All for your words of encouragement. It's just one of those days... I've had this for almost 2 years. In acceptance I think of... accepting that I have this... it is hard...I can't accept it. I find it hard to accept I can't do things anymore, it has taken over my life. It is a constant head pressure and/or dizzy, brain fog, or balance issues, or ear fullness, not knowing when it is going to hit, or... and the list goes on. I can't be as active as I was before. I can't be...me. Along with a couple of other issues, I realize I am depressed, but don't want to take depression meds. I've heard about the side effects and the long term side effects they are finding now (dementia). It doesn't help that I feel like that is happening now with menieres. I don't smile, I don't laugh anymore. I don't enjoy life anymore. I know you all felt the same way at some time or another and have come a long way to be as positive as you are. I look up to your positive attitudes and hope I can get there someday. Thank You again.
Hey Chris, I've been where you are. Many of us have. I understand the fear of side effects of medications but I've noticed a I decline beginning in my cognition, which is part of what you're talking about. It is aggravating, annoying and it's very easy to become depressed. The point is do not be afraid to get something for depression. Once you find what works and the depression eases you will be able to do much more. Could it be dementia? Sure it could. Only the tests required to detect dementia or Alzheimer's can. If you weren't depressed you would become more interested in pursuing relief from your medical issues and how to have a better quality of life. Based on my own experiences I will say this: If I'm depressed, isolating myself, having no interest in doing anything then I'm not able to find research and a Dr. That knows about Menieres and/or is open minded. "I Want To Be ME Again" I have that on my FB page. But truly can any of us be who we were? I enjoy the little things more. I watch and learn. I walk slow and I'm more in tune with what's around me. I now look at things in a different way too. A hawk in flight is just amazing to see. A tree. Many of us are using an Antiviral method of treatment. JOH's Regimen has had success. There are options but firSt you must get your head straight. That's where I'd start. Research here. Go back through the pages and read the threads that interest you. TAKE NOTES and print research that will back-up a treatment plan you'd like to try. This post and the good energy I'm sending you is the beginning. It's a perfect place to start. It won't be easy and it will take time. But you got this
In answer to your OP Chris, I believe that this problem comes about in confined and high narrow passageways due to their impact on your peripheral vision. Other problem areas can be supermarkets, long hospital corridors and walled passageways. A snazzy carpet/flooring pattern will only exacerbate matters. Due to our defective vestibular function we are far more reliant on our vision for balance. When we are in these confined spaces the brain has to process stuff far quicker as new information is coming at you right left and centre. When it gets overloaded it shuts stuff down and so it is your bodies way to telling you that it doesn’t like that environment. Listen to your body. Avoid narrow high stacked antique shops – they are only full of old stuff anyway!
Hi Chris, Many of us have been what you are going through. I didn't let the fact that I could be hit at any moment with an episode keep me from going to work so I wasn't going to let it keep me from doing things I love to do. I had several episodes of Vertigo and the Dizzies in public places. Many of the Vertigo episodes brought on vomiting and an inability to walk. -Once I had to sit in a closet for three hours at a place where I was working. I also had many times where I was singing with groups of children and when the session was over the children would leave but I couldn't get out of my chair for about 45-60 minutes. Many times when I was Out shopping I know I looked like the town drunk. I made or tried to make stumbling look like I was dancing. I started carrying Meclizine around with me to help with the dizzies. Valium helped with the Vertigo. I have been Vertigo, brain fog and aural fullness free for 18 months thanks to Valacyclovir. I haven't been on a roller coaster for a couple of years but I'm sure I could with no problems. Good Health to You
I've had two attacks at work. Had to have my husband come pick me up. And of course I couldn't finish my work. I'm a dog groomer and when you can't stand to move around the table or see what you're doing because of the nystamus, it's probably not a good idea to used sharp instruments on a dog. I've only had one pending attack at Walmart. I started to feel one coming on so I left my buggy in the middle of the store and hurried straight home.
Chris--If I didn't know better--I would have thought 'I' had written this! You explained 'exactly' what I'm dealing with. I don't have vertigo since the shunt surgery on one ear, but everything else you mentioned here. If you get answers or help--please share it with me/us here. It's a daily 'dealing with it' and I have learned to get busy (if I can) and getting out--sometimes helps, other times doesn't. I tried every type of anti-depressant but couldn't tolerate side effects. Now my hearing is getting worse in my good ear--and distorted TV, conversations are what I'm dealing with--Usually, about 1 hour to an hour after I get up in the morning--these symptoms start. Used to they would ease by noon and be mild the rest of the day. Not anymore. Still 'no vertigo' thank God! But--to have this feeling makes one nauseated, and as you said depressed. We don't look different--want to laugh and get 'our lives back'! So, you are not alone in this believe me! Brain fog is so hard to deal with. Trying to deal with a menu to fix for dinner--read and follow instructions to work our new VCR/DVD player just makes me want to cry! Still haven't figured that out--and hubby doesn't try since he really isn't good at that sort of thing. He can fix anything--do any kind of work with his hands but computers, cell phones, etc. Not his thing. I plan to get one of our grandkids to show me how to work it. Anyway, hoping you find some answers and help. Xanax does help the anxiety--but I think also may be adding to some of the symptoms--but you do what you have to in order to get some relief. Nausea is a bad thing too--and it comes and goes. I haven't let this keep me reclusive--but do have to pick and choose what I want to challenge myself to do. Let us know if you get better and I do hope and pray we/many here--will at some point.
Hi All, After a few bad days, then company for a few days... and now finally getting my head on straight... or somewhat straight... I'm truly sorry we all have to deal with this. I'm so glad and feel so fortunate to have found this site with all the great people trying to help each other and/or just listen and make suggestions. Sorry, this may be long, but to catch up with the last few comments since my last one. BumbleBea...please tell me where I can find your "I Want To Be ME Again". Thank You for your words of wisdom. I had started the JOH Regimen with Vinpocetine. I was taking 4 other meds prescribed by one Dr., and 3 other "natural" by another Dr. So, at the time so didn't want to inundate myself with so much medication that I couldn't keep up with it. Yellow... Thank You for the explanation... makes sense... unfortunately... To add to your list... I was in the mountains a few weeks ago. I had to limit my viewing time... too much to take in. My dentist has a beautiful wall mural of flowers... can't look at it - too much to take in. Santa... I've looked like the town drunk myself... what a waste...I don't drink! Physical therapy helped. My girlfriend chuckled one day and said... you are doing a side-step. So, it is my own little dance step. Almost felt like I was back out on the dance floor. Wishful thinking. Moodymom27...Thank You for sharing. But... keep in mind... you may start a whole new style for dog grooming. Yanksgirl...I don't have the patience I once had. I think this is because of menieres and a couple of other issues I'm dealing with. But, I do have all the patience in the world with my "kids" - a cat, a bird and a desert tortoise. At the beginning, between my Dr. and the ENT, they prescribed Meclizine (didn't work at all), Diazepam (Valium) - to help with the vertigo - didn't work) and Lorazapam (Ativan), placed under the tongue, to keep me from being sick - didn't work.
Hang in there, Chris. This strand is full of great advice especially about having a reason to try to maintain focus so you can get to the source that will help you most. I had my first severe vertigo attack in 1990 that put me in the ER and it has been a series of attacks and all the other symptoms you have listed on and off ever since. I have had long periods of remission (sometimes a couple of years) where I hardly think about the disease at all. You own your disease which I guess means you own your cure/relief. You just have to stay committed to finding it. I believe this site has helped me more than the "renowned" oto's and ENTs I have had access to in the Philadelphia area. There have been stretches where I thought I would never walk normally again and then I found this site, started the JOH regimen and within 2 months I was basically symptom-free. Now it seems I need the JOH and the anti-virals. Although the last few weeks I have been dealing with incredible tinnitus and fullness and minor balance issues, one grateful thing is that I do not seem to get the severe vertigo attacks anymore. I once read that the hairs in your inner ear wear out after so many bouts and prevent the vertigo but I'm not sure of the accuracy of that. When things really get tough I try to think about all the people dealing with life-threatening diseases everyday. My friend at work suffering from ATC cancer has had the worst quality of life issues over the past two years but he tries to find things, simple things like the hawk in flight mentioned above, to help him appreciate being alive. All the best to you.