So now my condition atm is a bit odd - anyone relate to this?

@Jess09 I was reading a patient appointment notes from Dr.S and he uses a drug called ā€œclonidineā€ to help Benzo withdrawal and also uses it for VM treatment.
I thought of you the moment I read this. Something to ask your doc.

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I know this might sound like a strange, very specific question but do you think you could try and describe your ā€˜imbalanceā€™ for me? It would really help me to be able to compare to the sensations I get in my head. Thanks in advance

Like a lot of these symptoms its very hard to describe exactly but Iā€™d say

  • a feeling of off-balance
  • a lack of confidence in your step
  • a feeling of your walk being ā€˜lop-sidedā€™

Itā€™s not like ā€˜dizzinessā€™

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Yup!! I have good days, not so good days or bad daysā€¦but I always have balance/bouncy stuff later in the day or eveningā€¦(I classify a good day as no headache and a clear head. A not so good day as a low grade headache and slightly foggy headā€¦and a bad day as a strong headache, nausea, etcā€¦)

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@GetBetter Thanks so much for thinking about me when you saw this. LOL I guess thatā€™s a good and bad thing, not good that I have that reputation but it was not my fault. The first neurologist handled the Xanax situation so poorly. Thank you, I will keep clonidine in mind. I looked it up, it doesnā€™t sound like it would be used for that but doctors use so many medications off label these days. Where are you finding these patient appointment notes from Dr. S? Iā€™d be curious to read some. :slight_smile:

@Young_Lee Interesting, sorry to hear youā€™ve had stomach issues too. Mine started when these symptoms first started. At the time I actually had mysterious back pain that was more bothersome than the random dizzy spells, and the doctors couldnā€™t find the cause of the back pain. It was super intense, people around me thought I was having kidney stones. My doctor said I had an ovarian cyst but then later came back and said it was small and it would pass and not cause all that pain. Anyway, I think the worry of the unknown source of new pain, the word ā€œcystā€, and trying to keep working during all of it made me anxious (I was totally unaware of my anxiety at the time) which in turn created the stomach issues. Iā€™ve been on prescription Prilosec for way too long, but the doctors donā€™t want me coming off of it as heartburn and nausea returns every time I try to taper. As nervous as I have been about trying the meds these days, somehow I went through with the endoscopy. Yes I was terrified, especially for the anesthesia while I was already dizzy, but the doctors were so convinced I had an ulcer and I wanted to find out too so I did it. I actually was fine with the anesthesia, got them to put Zofran in the IV when I woke up just in case. I felt BETTER dizziness wise when I left and that entire evening. Probably from the relief that it was over, but also I had oxygen at the base of my nose which I think REALLY helped my dizziness. I wish oxygen was a more standard migraine treatment. I felt so good that night besides the irritated throat from the procedure.

These exactly my symptoms right now and have been the main ones since this started 11 years

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I have backpain as well. I took prilosec off the shelf and made my stomach better. Maybe itā€™s too much gas lol. I donā€™t know whatā€™s causing the back pain though. I do sit at work awkwardly so that can be one of the reasons or laying around too much which pretty much thatā€™s all I do when I am not working. My back feels better when I stretch my hip flexors and the upper quad area by the groin.

Gah, iā€™m so close to going back on Ami ā€¦ might try just 5mg to see if that makes a difference.

The symptoms are worsening but it feels like its progressing towards recovery, if that makes sense. Getting worse to get better?

Anyway ā€¦ Iā€™m luckier than most ā€¦ thanks for listening :slight_smile:

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Backache can be caused by poor posture as can a stiff neck. Poor posture can be caused by poor eyesight and/or poor balance. So weā€™re back to the MAV again probably. Soon as I get a MAV attack/breakthrough I get backache. I check in a mirror and either my trunk is leaning (I lean to my left, away from my bad side) or I am leaning forwards. Perhaps we would be better on all fours?

I have all of those. I have blurry and gloomy vision in the morning. It could be a side effect of ami i think.

So sorry to hear that and you are still so young, I saw yr photo. Well rest assured the stiff neck, backache and poor posture is all the one thing I suspect, result of yr MAV. So settle that and you are back to normal. Just think ā€˜underneathā€™ your balance is OK, itā€™s just playing up because itā€™s hyper and confused. Iā€™ve been dizzy 24/y for more than 3 yrs now. Had a dizzy free day 14th May and that day balance was perfect. As good as before all this started, and Iā€™ve been in bed for 8 days at times in a stretch unable to stand unaided.

Oh you really put me off ami though itā€™s nothing I didnā€™t already know. Sounds like it might be cause of blurry vision. Makes folk dozy. My mother took it, for depression, and used to say ā€˜I wake up feeling like a stupified owlā€™. Ami should be my next step but I cant do dozy, canā€™t wake up or blurry vision. No way. Thatā€™s about all Iā€™d need, blurry vision and a disturbed balance equals a fall. Blurry vision could cause dizziness.

Photo? I dont believe i published any photos on here or on my google account. Where did you see it? I dont even have any social media.

Sorry. Maybe Iā€™m confusing you with someone else, thought it was a video clip.

Hey you are young_lee, how can you not look young ? :stuck_out_tongue:

I hate my name. It gets confused with John, Juan, Don, so on. I been even called Rob. Itā€™s Young! How did you get Rob!??

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Ha, ha, now you know weā€™re all going to start calling you ā€œRob.ā€ :smiling_imp:

I liked both Don and Juan. In fact, I know a couple of twins named Don and Juan. Their mother appears to have no idea why thatā€™s funny.

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Juan might come in useful in South America or Spain.