Propranolol. Yes took 8 months to control the 24/7 dizziness regularly but it does come back at reduced level when really challenged, if Iām tired, under too much stress/hassle but it does keep me about 85% 90% of the time with care and a bit of luck. Todayās a really off day for me (technology hassle) but still cooking dinner and using PC and standing upright, almost anyway. I had many months couldnāt watch TV or computer screen at all but thatās OK now.
How I coped with all that vertigo. Too old maybe to have ever used the expression āFreaked outā maybe. At the time I was ignorant of all things vestibular, had been told it was BPPV, harmless and that there was nothing that could be done about it and Iād had previous attacks which lasted up to 72 hours before and they had always gone away and left me without any symptoms between one acute attack and the next. Had yet to discover breakthrough symptoms and 24/7 dizziness. I do hope I never have to go through it again though. Helen
Iām glad you are better Helen that is so awfulā¦my heart really goes out to you. Did you ever feel rocking and swaying too? I am so sorry for all the questions I am just besides myself with how I feel lately. I am working from home today thank god because I am a mess. I think I have cried more these past 6 months than I have in my entire life
Iām sorry Iām just having a really tough day today. I donāt mean to sound paranoid and all. I just donāt know how to cope anymore. Iāve had this for so long and the fact that it has come back just makes me so depressed and scared. I have been crying on and off all day. I just feel like this is it this is how I will feel for the rest of my life all the time and I am destined to be like this. My husband and daughter deserve better and it just makes me so incredibly sad
Jess, absolutely no need to apologise. Perhaps I came across as a bit abrupt there, didnāt mean to.
The symptoms are very annoying indeed and can be disturbing.
If someone was able to tell you, though, with full confidence, that itās just an annoying sensation that will go away and is doing you absolutely no harm, would that help?
Obviously when the symptoms become disruptive and debilitating thats a different story, but some of them are just, essentially, irritating, distracting and annoying.
Think of the to and fro motion feeling as āvestibular tinnitusā?
I didnāt think you were being abruptā¦I am just anxiousā¦I know itās an annoying sensationā¦it just so scary and the fact that I canāt relax just makes it worse. I want to feel normal again or at least somewhat normal. Sooner rather than later because I honestly donāt think i have the strength to keep going with how I feel
I believe it will get better for you in time. Thereās lots of anecdotal evidence to suggest it gets better for most people, its mainly the timeline that differs.
Hang in there Jess and keep the faith - it will improve!!
I am trying toā¦honestly I am trying to keep it all together, but it is very difficult when you feel like this all the time. I just want my life backā¦like we all want. I keep everyone on this board as well as everyone in the world suffering with this in my thoughts and prayers always
Are you on any meds Jess? I would get vertigo sometimes after shutting of the lights to go to bed when itās dark. Ami helps with making you drowsy and just makes you fall asleep. Sometimes I would fall asleep and wake up in the morning not remembering how I fell asleep and thatās the best.
It is hard, even now as Iām getting much better I donāt feel that my body is really relaxed. Sometimes I can get my mind to relax, but the body sensations are still all messed up. Itās like being in a nightmare, an altered state of consciousness, or having a bad drug trip 24/7. Itās awful for sure. Try to find something that makes you feel a bit more normal, like your old self.
For me, talking on the phone with people seemed to work the best. Then I would realize that I just had a pretty normal conversation with someone - so I must still be me, its just there are parts of me that definitely donāt feel like me. Also driving helped me feel normal. Or looking into a mirror. I donāt know why, but it was important for me to convince myself that I am still me.
Take a look at some of the books in the recommended products page. And do think about getting some counseling / psych help as well. Maybe there is something you can rearrange in your life a bit to ease your anxiety and get on a path to recovery.
Im dealing with the anxiety as wellā¦im in the beginning of my journeyā¦no dx yetā¦pending vng, neuro otologist and neuro ophthalmologist (this has left me with constant shaky vision)ā¦i started migraine diet and supplements a month ago which has helped a bitā¦but still i am dizzy, imbalanced, mild headaches, and the shaky visionā¦i started going to recovery internationalā¦only one meeting inā¦its a peer lead anxiety self help groupā¦and i feel like it might help meā¦if i control my anxiety my symptoms seem to be lessenedā¦im not at work so im alone all day in my house so i knew i needed some sort of coping helpā¦my heart goes out to you and to everyone dealing with thisā¦im constantly going to the success stories for reassurance that this will pass
Also forgot to mention that in my despair i have been using cbd oil for a month at night which relaxes and helps me sleepā¦maybe thats something u can tryā¦i know its not for everyone but at this point im willing to try anything
Not yet I am going to the neuro in October. I take Xanax as needed when it gets really bad. I was thinking about asking for nort since I hear that helps with the rocking/swaying vertigo too. If I could get rid of that I would be happy. Do you have those symptoms too? Is the Ami helping?
I have had this for 17 years and there has been some really good years. My last relapse was about 6 years ago and it literally lasted 3 months after that things calmed down to a normal level. Not this time now we are going on 6 months and I still feel horrid. I try to do stuff here and there to take my mind off of it. The tough part is I have a hard time falling asleep because the swaying and rocking is out of control. If that could dissipate a bit I think I would feel much better. I am currently in counseling and it has helped a bit but at the same time itās the disorder itself that is causing anxiety. The symptoms alone are whatās making me insane.
I have shaky vision too along with the swimmy floaty Head, rocking, swaying and spinning vertigo. Itās absolutely awful. I would not wish this on anyone! I have been going to counseling and it is helping a bit but itās the symptoms themselves that cause me anxiety. I canāt sleep at night with all the rocking and swaying. Thatās the problem. What are your symptoms of dizziness?
@jess21880 - sounds like you are having a bad time at the moment - it took me back to when I first got this in April when I couldnāt walk straight and was vomiting. It really didnāt know what was happening to me and I was quite frightened , which didnāt help. I have been lucky that when I lie down I am okay - only had vertigo a couple of times when I turned over. I am lots better now since doing the diet and taking Pizotifen so hopefully when you see your Neuro you will get something to help.
I do struggle to sleep though - some nights I am still awake at 2am - I canāt seem to switch off despite being exhausted. I hope things get better for you soon - hang in in there!
Thanks! Iām glad things are working for you! I hope they continue and I hope I can find something that works for me too. I just want to feel back to a somewhat sense of stillness
I was dizzy 24/7 for more than three years until the meds gradually started to control it. It was rotary, vertigo, but it was me that was appearing to move not the environment unlike the 8 day long attacks which was the opposite. My dizziness gradually went to move of a rocking/swaying sensation before it eased up so I think it was for me at least a sort of half way house, then it was feeling like on a rough sea in a boat. Interesting the rocking sort of sensation will come back sometimes when things are overchallenged I suppose but itās not so violent as it was and stops sooner. Pre medication if I went into a supermarket, restaurant etc I would become instantly sometimes dizzy and it would last for a week or even longer from a 10 minutes in a shop particularly.
Iām off today because bit too much hassle I suspect and itās there now. Stress/Anxiety might not cause MAV but itās The Best Fuel to keep it going. Itās a pity more people cannot receive help with the stress etc because I think that can prevent recovery more than any other individual thing. I think you may well find that is whatās making you so poorly at the moment. Any form of distraction you can cope with should helpl immensely. That and working out how best to get a good nightās sleep! Helen
My dizzines occurs mainly when im movingā¦or watching things move or when i have to focus on alot of things like the supermarketā¦in the beginning i was dizzy 24/7 with swaying and rockingā¦that has lessenedā¦i believe my shaky vision is also causing dizziness and some slight swaying because when im focus on things and see them shaky i start to get dizzyā¦i want medsā¦but im still in the discovery phasedā¦i believe i have vm and PT says she thinks it might be that so after i see all these specialist im most likely going to see a neuro that specializes in headachesā¦all my specialist appointments are in October tooā¦waiting is horrible
Thank you. I know what you mean about wanting to feel still. I thought I was stuck with it but I have been lucky that the dizziness has gone - just feel unbalanced on a bad day.
