I want to say thank you

Ears, nose and throat
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Hi Group:

I wanted to say Thank you to all of you who have been here to give me help and support.  I've had some bad days as I know all of have, but without this group I would have been in much shape than i am at times.  I knowI've probably been a pain in the butt with all my questions but you have know idea what your answers and support have meant to me.  I know everyone on this board has lots of symptoms with this craziness (as I call it) but I'm very thankful for all of you.  

I pray each night for all of us and that we will all be well again.

Thank you to all of you biggrin

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Your very welcome patty. I have had it for 10 years. Sept for 1 therapist I had , I don't know anyone who has it. So talking to you and others makes it a little better. Just wish we all had more answers. A cure would be sweet to. My therapist has no idea why mine is different this time or why the therapy isn't working. She wants to ship me off to the therapist helped me before. But it's a hour drive one way. She works at a different place now. The ride there will be torture .

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You Are So Welcome. 😍 I so agree with you!!! I don't know what I Would of done without All If You To Talk To When I felt I was falling apart.

It helps so much to have All Of You because it's difficult to talk to friends and family when they don't understand.

I pray For Everyone 's Healing 😃

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I understand exactly what you are saying. Some days this group gets me through the day knowing I am not alone with these symptoms. Thanks to all of you and let's get better

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These disorders suck to be honest.  Its crazy how it changes.  I started with rocking/swaying sensations thru my entire body for 10 months, it started to get better after starting VRT in March, then the sensations changed to a leaning, falling backwards, bobbing up/down, and i have all these feeling wether I'm sitting, laying down or standing, I also feel the floor moving when I walk, feel like I'm being pushed forward when walking sometimes, dropping feeling when standing, headaches, nausea, ear fullness and popping, neck pain, fatigue, dizziness when moving my head or keeping it in one position for to long, there are so many differnt dizzy sensations and they do change. 

I had BPPV in 2009 and was treated successfully but then when this started I had it again about a month ago, it was awful.  Also had the falling from the sky feeling during the VNG testing so they stopped the test.  It makes no sense to me,how one day be fine and all is normal,then bam dizzy, can't eat certain foods anymore, feel anxious, nauseas and off balance all the time.  The food thing really make no sense to me, I've eaten chocolate, cheese, wine all my life with no problems, now I'm afraid to eat it, because I could a dizzy headache for days, its totally crazy to me.  

I know when i do things like vacuuming, mopping and bending forward a lot I get dizzy off balance and that last for hours.  Showering is a problem also, so I actually bought a shower stool so I don't have to bend forward to shave my legs, good Lord I sound like a 90 yr old and i"m 54.  I feel like I"m aging so fast, but I don't look that way, lol.  When I have the head, shoulder and neck pain I get dizzy before it and then all of it will last for 3 days.  

I guess I'm lucky I still drive, go to work. But I battle everyday in some way with dizziness.  The other thing that is weird to me is the anxiety and panic that comes with it.  I've alway had anxiety but normally only in situations but this is different and I hate it.  I'm really hoping this propranolol works for me.

Have you tried any meds?  I know I hate meds and they scare me with all the side effects, but I realized I can't live like this, so I had to try.  I took amitriptyline for about a week and it stopped everything, but I had a reaction and some vision problems on it so the ENT stopped it.  He said I could try nortriptyline which is the cousin to ami but has less side effects, but I just couldn't take it, all i could think about was how the ami was and it scared me.   

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2 mg diazepam used to help. Now it does nothing. No other meds for it. Same here with triggers. Seems tho everything sets it off. Working on me and my wife's cars sets it off. Especially if I have to get under them. Turning my head all different directions. Why at first I figured was the bppv again. But this time I didn't do anything. ENT thinks it is menieres. It kinda fits to. Have family history if it. So must be my turn.bad thing us they all have money and don't work. I am the poor side of the family. Lol. Sometimes I wish it would go jump all over someone else.

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My symptoms started from a head trauma in Feb this year. I found beta histamine did help but gave me headaches and brain fog. I came off that and take one travel sickness tablet which you can buy from the chemist and docs can prescribe called cinnazine and that steadys everything and stops you feelin sick. If one tablet doesn't work try two. You can't mix medications though. It can make you drowsy but one tablet doesn't me. One exercise to try is telling your brain when standing or walking which foot is down,wiggle your toes say right foot left foot keep doing this as the brain forgets you have feet and that's what may make you wobble. Do the same sitting ground your feet. Brain has to retrain so you will experience all kinds of sensations. Even before you get up from bed wiggle your toes. Hope this help. The support on here is outstanding. So let's all send each other healing through our thoughts and messages. 

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I hope for you as well Patty. I am also wondering I am having such a bad dizzy day I am worried. Does anyone else feel fullness at the back of the head? Generalized weakness? A feeling like you just cannot stay awake? I was at my sons football game and became so bad that I had to lay down in the grass and it took every ounce of thought process to stay awake. I sleep enough and usually have to sleep a few hours a day. My vision can get out of focus and I literally sometimes swear im going to die. Driving today was scary. Every stop light was enough to trigger a panic attack and my poor two kids have been dealing with this alternate personality that comes out. Does anyone else have these personality changes or anything like me at all? ??? I am really wanting to be the awesome mother and energetic fearless person I used to be.

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I feel like you. The driving thing freaks me out when I am a light that takes too long. I get very anxious. Feel better

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I know this disorder sucks to put it bluntly. I'm sorry your having a hard time, but I know how you feel. I was so terrified of this for about a year. Every tiny little thing would send me right into panic and anxiety. It's hard to not know what each day is going to bring, for that matter what each hour can be like. I know I have weakness at times, were I just feel like I can't move and I'll just feel so tired I can't stay awake. Then I start to think oh no something else is wrong now and yup that anxiety poors out. If course with anxiety we get a managerie of symptoms, I know I do. Also having the anxiety makes the dizziness worse so the visious circle starts and go can go for days or hours.

Lately I'm having falling backward and sinking feelings when I sit, especially in certain positions, what is that I have no idea. It's just makes me crazy. The dizziness is ever changing. So of course my brain has bad thoughts that it's something new and shoukder I go running to a doc. I stopped the docs I just can't keep running to them.

Your not crazy and your personally is fine, it's this crap, when your scared you just can't help but be angry and sad at the sane time.

I hope you fe better

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You explain your symptoms as if you were writing my experience. It amazes me every day how many of us have this whatever it is. I only wish we could get rid of the anxiety which up until 8 months ago I never in my 66 years had

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If I could get rid of the dizziness my anxiety would be much lower. I've had anxiety for many years started when my thyroid went out of whack, I'm hypo thyroid. But sunce this started 16 months ago I the anxiety has been awful. I never had it when going out, like shopping or dinner but now I have it everytime, thankfully I have Xanax I can take. I just started propranolol a few weeks ago and I hope it helps the dizziness, it has helped the anxiety some tho.

What diagnoses do you have? What symptoms do you have? Is it daily, does it come in less dizziness at times? Are you on any meds? Sirry for all the questions.

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It started over 2 years ago while driving. I went numb in mouth and hands and feet. Vision got strange. Was trying to just drive to get lunch thought blood sugar was low or something. Pulse all over the place. Blood pressure all over the place. Wasn't hyperventilating. Called ambulance which was almost embarrassing at 32 years old perfectly healthy. Never been the same since that day. Sweating. Palpitations. Dizziness that never ever lets up. Nervousness. Can't stay awake. Can't sleep at night. Can't remember anything. Feel like my body is always sick and always ready to jump out of stupid situations. Like cars in car washes. Persistent head pressure feeling. Its like I have been stuck in a permanent trip for over 2 years. Never completely here anymore. Numbness in hands and feet and mouth at times. Used to have strange scalp sensations. Can't stand around too long feel like I can't cross parking lots or walk far anymore without worrying. Sudden rushes of scary dizziness. Haven't passed out yet. MRS,MRAs, CT scans of head neck and back including abdomen. ENT found abnormalities that they can't pin point. Found out through rheumatologist antibodies sky high for hoshimotos disease but thyroid labs too normal for all 5 endocrinologists to care. Blurred vision double vision. Headaches. Neck aches. Back aches. Skin itching and boils. Hair was thinning but comes back thank gosh. I used to be a healthy woman who never thought about death or my health at all. This has changed my entire life and the personality changes freak even me out. Memory gone been meditating and using oils and calming techniques as well as chakra work. Acupuncture and acupressure. Tried paleo for few months. Gluten free too. Just constant irritability and fear for the fact they are missing something but you know..... After 2 years I kind of just realize what I've been accomplishing despite this and rest when needed and calm as much as I can. This is horrendous as we all know but oneday I keep hoping it will just lift and my head will be clear again. Lol. We can hope can't we? But hoshimotos is my only diagnoses. I've also been doing vestibular therapy from the techniques I've learned from Youtube. The diets are said to produce results possibly after a year. Give me a break please im a sick busy scared working single mother. The strict diets don't always stick well.

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Oh and sorry answered half your question.... I take 0.25mg klonopin am and pm. Tried propranalol but whatever this is has my blood pressure normal at 80/50 most times. That's my new normal and the docs don't seem to care. Once in awhile I call them episodes where my blood pressure sky rockets then plummets 5 times in half hour. Thaws usually when I call the ambulance after waiting about half hour until someone near me calls. Stable by time I get there so they send me home. 5 or 6 times so far. Propranalol dropped my blood pressure way too low. Had to stop taking it. Antivert didn't work. Klonopin really has been my life saver but on bad days even that doesn't help.

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My legs got weak at the therapists one day. Legs where shaking. She made me sit down. Stopped the therapy.

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After you've had it for years you start to notice more , or remember more symptoms.

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This is very true. Now I can even think back years ago and recall certain little things happening here and there that I would bring up hew and there at doctors offices but it was so few and far in between they just shrugged and said could be anything. Few dizzy spells, excessive tiredness after work outs. Used to always have black out vision fuzzy spells when getting up. Putting my head down quickly usually would resolve those. Now its just a whole new and scary dizzy world. Gave up even trying doctors anymore. They say things like it probably would have killed you by now if it was going to. Like wow really? Always comforting.

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Patty - you are welcome and I know that God is sustaining and healing all of us. I am feeling much better, my neurologist put me on B12, 2500 mcgs and I drank a gallon of water a day and it has helped greatly - thank God! The sharing of ideas and speaking with people who understand helps a great deal.