Hello,
I have been reading through posts and it seems as though a lot of people have shorter âepisodesâ of the dizziness. Does anyone have a constant feeling of dizziness with his MAV? As I posted before I have three to four month bouts of the 24/7 dizziness but am becoming a little confused if MAV is the right diagnosis for a dizzy feeling that is all day. I know everyone is different, but does anyone out there have 24/7 dizziness? Thanks!!
Kaylie
KayâŚcan you describe your dizziness? There are various typesâŚlightheadedness, rocking sensation, wave-like feeling, etc.
Joe
I describe my dizziness as a feeling of just getting off a merry go round or after I turned around a couple of times. It is not a spinning feeling. Another way I describe it is if I spun around a few times and never fully got back to ânormalâ There is an overall feeling of dizziness all the time. It is definitely not lightheadedness, but not full blown vertigo.
I think most people here have the 24/7 feeling too⌠no? In any case, thatâs all I have (except headaches/nausea that react to triggers etc). 24/7 since July 2007, no pauses. A âgoodâ day is one where I can do more than usual but am still way housebound and thereâs no way I can view as much motion as TV or anything like it would require.
I too have 24/7 dizziness. In my case, I describe it as lightheadedness or a sense of constant imbalance. I have worse days when I really canât do anything outside the house. Some days I can get out but I never loose the feeling. I also have varying degrees of brain fog and ringing in my ears. I also feel that my vision is off - almost like my eyes are not looking at the same thing at the same time. This has been going on since June 2008. I have had one episode of true vertigo with the room spinning - it was brief and in the middle of the night. I have been diagnosed with MAV (vestibular migraines) and started low dose Effexor two weeks ago - no improvement yet but hopeful for some reliefâŚ
KayâŚi also have the feeling (on worse days) when i feel as though i have been twirled around a few times or been on the merrygoaround. Do you feel any motion sensation or tension in your head? I have a compressed tension mostly on my right temple area sometimes i can feel a dull pultze or throb. Have you tried any anti-anxiety medication? This has helped me out.
Joe
My dizzy, spacy, out-of-it feeling is 24/7 as well. Some days are better than others but since May/June of 2008 I havenât had one day where I felt ânormalâ. I would describe my dizziness as fogginess, heavy head, and like my eyes arenât working together. Moving around alot and then sitting still is when I notice it the most. My dizziness is mildest in the morning and worse at nightâŚpretty consistently. I think my eyes are so tired by the end of the day and that plays into it as well. I do not have an official diagnosis yet. I am still trying to figure out my other eye issues and have a visit with a dizzy doctor next month.
Joe, what anti-anxiety medication do you take and it what dose? My neuro prescribed Cymbalta but I am waiting to try it.
Colleen
I too have 24/7 dizziness. My dizziness feels as if I have been spun around a few times or just gotten off a merry go round. I also have dips that occur, I feel the floor drop. Even on my so called âgoodâ days, I still have a sense of dizzness. My eyes feel as if they canât look at an object without moving off the target. The symptoms are strange sounding but real. My symptoms increase in the evening generally. I have had this daily since May/June 0f 2008. Lately, I have been feeling lightheaded, I think it is due to me increasing my Verapamil though.
â Begin quote from âkaylie444â
I describe my dizziness as a feeling of just getting off a merry go round or after I turned around a couple of times. It is not a spinning feeling. Another way I describe it is if I spun around a few times and never fully got back to ânormalâ There is an overall feeling of dizziness all the time. It is definitely not lightheadedness, but not full blown vertigo.
â End quote
I like this discription. Iâll have to start using it.
Before I got a correct diagnoses I was going on a 24/7 dizzy spell that lasted 18 months. Once I got the proper diagnoses, and started a migraine prevention plan, the 24/7 went away. Now all that I experience is a dizzy spell about once a month to once a week depending on stress levels and time of year.
Brian
â Begin quote from âBrian Bâ
â Begin quote from âkaylie444â
I describe my dizziness as a feeling of just getting off a merry go round or after I turned around a couple of times. It is not a spinning feeling. Another way I describe it is if I spun around a few times and never fully got back to ânormalâ There is an overall feeling of dizziness all the time. It is definitely not lightheadedness, but not full blown vertigo.
â End quote
I like this discription. Iâll have to start using it.
Before I got a correct diagnoses I was going on a 24/7 dizzy spell that lasted 18 months. Once I got the proper diagnoses, and started a migraine prevention plan, the 24/7 went away. Now all that I experience is a dizzy spell about once a month to once a week depending on stress levels and time of year.
Brian
â End quote
Brian, can you please tell us what your âmigraine prevention planâ consists of? Are you taking any meds and if so, what and at what dose? What other things are you doing? Thanks.
I donât know if what I have is considered dizziness or not. Iâm still confused about that term.
I have an almost constant feeling of motion sickness, it seems to always be there. I feel as if I have just gotten off of a merry-go-round or twirled around a couple times as some of you have described. BUT, it is not the spinning I feel, it is a motion sick headachy feeling. Everything appears to be stationary. Some days are much worse than others.
Then there are the times Ifeel like I am moving slightly. For instance if I walk down the long hall at work and some of the pictures on the wall are cooked - that makes me feel very off balance and as if I am moving a little. And every now and then I have a half second mini-spin.
This is 100% different than my severe vertigo which fortunately is not with me on a daily basis.
Bookworm,
If it helps, when you say vertigo to a doc, he will automatically think spinning. When you say âdizzyâ well, you donât know what they are thinking, maybe spinning, maybe offbalance or lighted headed.
After reading Kaylieâs post, I am going to start saying my dizzyness feels like I just got off a merry-go-round, nothings spinning, but I canât get my bearings. Then I will add in all of the other stuff I experience. :lol:
BCRelief,
My migraine prevention plan is rather simple, try to lead a very humdrum routine life. (yeah right :lol: ) A very strict sleep cycle, I go to bed at almost the same time every night, and only let myself sleep in an hour or two on the weekend mornings. Reduced stress in my life, I try not to do too many things in a day, and give myself at least a hour to myself at night. I will also take short naps if I start to feel tired, wich is almost a given when I get home from work. Then there is diet and excercise, and of course medication, Klonopin at bedtime (mostly for tooth grinding and headaches caused by the grinding) and Depakote.
Brian
Iâm sure misdiagnosis is often the result of medicâs not fully exploring the type of âdizzinessâ being suffered. The neuro-otologist saw was insistent that different types had different causes. Iâve often wondered if like other symptoms, different types indicate different stages of acuteness. That wouldnât surprise me at all. Iâm sure the presence/absence of true rotary vertigo is the true indication of how much underlying balance is affected. As is the degree of involvement of static/dynamic balance but tests are, at least in my part of the UK, very profunctory. I feel the dizziness factor should warrant more medical attention. It is unfortunate that âdizzinessâ tends to be closely associated with neuroticism. Helen
I think I am in one of my VM cycles, and having migraine headaches w/o aura to boot. For the last 2 weeks I have had increasingly debilitating dizziness that is 24/7. Headaches accompany it, and the last 36 hours I have had excruciating muscle tension/pain in the neck, and across top of shoulders. The thing that bothers me most is the anxiety I get. I am so afraid of this dizziness! During one of these cycles, I literally cannot function and have many âbed daysâ because just simply turning my head to look at a family who is talking to me, reading, or even watching TV just sends my head on some carnival rideâŚand it scares me to the point that I sometimes get panic attacks. Does anyone else get this too?
Hi Rita. All the symptoms you list are common with MAVers and some people also have panic attacks as a result too. Yes I have had that 24/7 dizziness many times myself over the years. And worse. And been bed bound for days on end. Same with the TV and head turning is always problematic and more so when MAV is in heightened mode. After years on preventatives the latter is still with me quite a bit of the time to varying degrees. Today being one example however once medicated symptoms that donât go away completely tend to become gradually less severe. If itâs vertigo the dizziness really is the most horrible feeling but I was sorry to read you find it so scary. You need to keep reminding yourself it isnât actually injurious long-term and it will stop at some stage although I know it can seem a very long time waiting.
Thank you so much for responding and for being so kind!
Yep I had 24/7 sensations prior to meds and have them again after a relapse now. I had a bad morning with a flare up, couldnât move my head or body 
I know how you feel with being scared. That is how I feel all the time.
Well I am unsure of your best way forwards from here. From my experience unmedicated MAV just gradually gets worse. Have a read of my PD. Once you are 24/7 particularly it isnât gonna go away on its own. Thereâs no point even hoping it will. I noted the comment on your User Card but thereâs bound to be some medication you can tolerate. More often than not itâs just a case of starting off very low and very slow combined with a bit of the âGrin - or grit your teeth maybe - and Bear Itâ a bit syndrome until it settles into your system. If I were you I would look at meds again. I know I wouldnât have improved to where I am now without meds and. still need them more than four years on. Its a tough nut to crack and we do only get the one shot at life. This isnât the Dress Rehearsal as they say. Get hold of your doctor and try get it under control. Let us know how you do. Helen
I suspect this is the issue that holding you back. You need to deal with this. Anxiety is food to MAV. It will thrive on it.
This is true. Iâve always had anxiety and I guess this relapse was very traumatic for me so Iâm always on edge about my symptoms.