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What is the toughest symptom for you?


#8

The rocking feeling is much worse than just the general lightheadedness and visual overstimulation. Symptoms were controllable (to a degree) by lying down, sitting still or being in a low-light environment. Rocking, however, is not affected by those changes, and I find that feeling MUCH more disturbing (and incapacitating) than the older symptoms.


#9

It’s a tough thing to rank I know. If it weren’t for the dizziness, none of us would likely have much in the way of psychological issues going on. But for me, I think the pysch stuff is worse than the dizziness. The dizz is mostly low-level stuff but when it goes off it’s bad but luckily not for long any more. It’s hard to believe I used to be pretty much the SAME every day in terms of mood before this BS arrived. I’d have the odd day of feeling maybe a little low but hardly noticeable and nothing a few drinks at the pub with mates wouldn’t sort out. But now … holy s**t batman, it’s a daily rollercoaster of ups and downs and freak outs and highs. Rarely do I have any middle ground unless I drug myself stupid. I’d rather feel the highs and lows than nothing though.

S 8)


#10

I voted ‘Vertigo’ but I take that to mean rocking and bouncing also - I would include those under ‘vertigo’. I didn’t see “poor concentration” on there but that is a big issue for me with this - can’t remember stuff, can’t focus, feel very vague and out of it. All of those things are constant when I’m in the depths of MAV. After that I would include the pyschological stuff which is really awful, but comes and goes.

I have TMJ and insomnia anyway - ie separate from MAV.

Cheers
Vic


#11

When the vertigo had a hold on me, that was the worst symptom. However, a very close second was the brainfog and fatigue, which was much more persistent than the vertigo for me.


#12

Hmm, I have to think about this one a while before voting. It’s almost like asking, if you could eliminate ONE of the symptoms, which would it be and would it make you feel that much better? I’m not sure. And for me, it varies. Plus throw in the meds you are taking and that scrambles the answer a bit.

On a side note, I am soon going to post about my appointment with the physician assistant. Went well overall I think, although I don’t have “THE” answer but still a plan of action for treating my migraine issues, and confirmed that we here know do indeed know a lot about migraine and treatment of them!

~Bonnie


#13

Voted dizziness, but to me this manifests as extreme lightheadedness and foggyheadedness. Not sure how to describe that exactly, but that is the worst symptom I have.


#14

I voted the Rocking Motion but if were you to have asked me 10+ years ago i would have said Vertigo. The Vertigo has calmed down significantly over the years. I also have lots of Tension inside my head so that is equally as bothersome as the Rocking Motion. My head never feels completely rested.

Joe


#15

Originally I voted the dizziness/vertigo but I think I would change that to rocking or constant unsteadiness. For me the actual vertigo or “room spinning” does not happen as often as say a person with menieres. Instead I have a daily unsteadiness or “dream-like” feeling that never goes away. I can honestly say I rarely feel normal. As the day progresses the rocking eventually turns into a nasty headache. I just started the diet from “Heal your Headche” and am considering trying prescription drugs but I have always been hesitant. If my wife were to answer this survey She would probably vote my loss of libido which isn’t on the list anyway. I feel when one person has this affliction both people in the realtionship suffer. Good thing she is very supportave because I can imagine some people could not put up with someone who is stuck with the problem.

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#16

Toughest for me is the rocking motion, and floor bouncing. All of these are usually associated with a mild dizziness. I can work, do things at home, and otherwise function…but this drives me crazy.
For some reason I’m better at work. I don’t know why this is. Maybe because I’m so busy?
Take care, everyone.
Janel


#17

Vertigo is the worst, but thankfully, that doesn’t happen as often anymore. Now,I hate the neurological symtoms I get with a bad headaches. The other night I was transferring from the wheelchair trying to get into the bathrom. I was holding tightly onto the door frames and my legs would not move. I was getting very dizzy and I could not talk or let go of the door frames. I felt that if my grip finally gave way, I would fall like a board on the ceramic tile of the bathroom. Finally-always feels like a million years- I could whisper my husband’s name and my service dog got my husband. He was only about 6 feet away but in another room. He was able to catch me before I fell. Honestly, I do not know what I would do without my husband. So many nights, I can not function at all. Better stop now before I start crying. It’s been a hard month.

Claudia


#18

Hi Claudia,

So sorry you are having such a woeful time. I really hope things pick up for you. At its worst (and you are clearly in that category) this condition is utterly miserable. Please know that we are all thinking of you.

Victoria


#19

— Begin quote from “caglenn”

Vertigo is the worst, but thankfully, that doesn’t happen as often anymore. Now,I hate the neurological symtoms I get with a bad headaches. The other night I was transferring from the wheelchair trying to get into the bathrom. I was holding tightly onto the door frames and my legs would not move. I was getting very dizzy and I could not talk or let go of the door frames. I felt that if my grip finally gave way, I would fall like a board on the ceramic tile of the bathroom. Finally-always feels like a million years- I could whisper my husband’s name and my service dog got my husband. He was only about 6 feet away but in another room. He was able to catch me before I fell. Honestly, I do not know what I would do without my husband. So many nights, I can not function at all. Better stop now before I start crying. It’s been a hard month.

Claudia

— End quote

Claudia

I am so sorry you have had a hard month but I am glad you have a supportive husband who can be there for you. And for your service dog.

BTW it is okay to cry sometimes the release is helpful to me as there are times when there is nothing else to do and it helps.

Know that you are in my thoughts and prayers…hopefully better days will be ahead in the near future.

This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life. - Author Unknown

Timeless


#20

— Begin quote from “stevenf”

Originally I voted the dizziness/vertigo but I think I would change that to rocking or constant unsteadiness. For me the actual vertigo or “room spinning” does not happen as often as say a person with menieres. Instead I have a daily unsteadiness or “dream-like” feeling that never goes away. I can honestly say I rarely feel normal. As the day progresses the rocking eventually turns into a nasty headache. I just started the diet from “Heal your Headche” and am considering trying prescription drugs but I have always been hesitant. If my wife were to answer this survey She would probably vote my loss of libido which isn’t on the list anyway. I feel when one person has this affliction both people in the realtionship suffer. Good thing she is very supportave because I can imagine some people could not put up with someone who is stuck with the problem.

— End quote

That would be an accurate description for what I was experiencing though the head pain wasn’t often an issue.


#21

Claudia - I am so sorry to hear about you having a difficult time. you are in my thoughts and wishing you much better days. I hope that we all have better days soon. all the best.
Lisa


#22

I am surprised not to see (on the list) what is by far my worst symptom - nausea.

-Op


#23

I’m with Melissa, naming memory loss but really meaning all aspects of brain fog.

I remember a few times last year on the job–one in particular is vivid–where I was on an electrical job (I specialize in old wiring) and come late afternoon I assured the customer I would get everything back on that day. Around 5 PM, maybe, I told him the clock was stopped, meaning I was not going to bill him any further that day. Around 7, though, I gave up and went home. I think that’s a day when I bummed a gram of acetaminophen off him, in the hope that it would help the headache.

This customer took a few hours off work the next day to be with me (I didn’t charge him further for this, of course). As I took the nasty wires apart, I labeled each one and, if I remember right, used his brain to hold on to what that was about. Then, using my remaining dregs of expertise, I tested them, sorted them out, and took the mechanical steps to reconnect them safely.

This year, I’ve referred quite a number of potential customers to colleagues. But fortunately or unfortunately, I also support myself partly by writing, and this I can do at my own speed. Exhaustion is not the same impairment. Even headaches.
When the brain fog hits, though . . . there’s a creature called the Densan, meaning the fellow who’s classified as bright, but sure doesn’t manifest it behaviorally.


#24

Yeah, should have had nausea on there definitley. We could always rerun the poll in another few months. There’s a lot of new people here since that one went live…

Thanks for the comments. S


#25

Hello, I am new to this board and first wanted to say thanks, reading all your post has helped me a great deal, if nothing else I know I’m not alone. Like most of you I also voted dizziness but the anxiety is a very close second. After 6 yr’s of miss diagnosis just recently told I have MAV and started on Topamax…7 days @ 25mg and feeling pretty bad but hoping it will work it self out. Thanks again. Cecilia


#26

I went for dizziness…Assuming this includes the ‘off’, ‘brain fog’, ‘hangover’, ‘cotton wool’ etc etc feeling
I hate trying to describe that feeling


#27

Just found these posts when browsing. How about an update? I would definitely add exhaustion and brain fog as a problem.