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


#21

@Jess09 I was reading a patient appointment notes from Dr.S and he uses a drug called “clonidine” 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.


#22

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


#23

Like a lot of these symptoms its very hard to describe exactly but I’d say

  • a feeling of off-balance
  • a lack of confidence in your step
  • a feeling of your walk being ‘lop-sided’

It’s not like ‘dizziness’


#24

Yup!! I have good days, not so good days or bad days…but I always have balance/bouncy stuff later in the day or evening…(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 head…and a bad day as a strong headache, nausea, etc…)


#25

@GetBetter Thanks so much for thinking about me when you saw this. LOL I guess that’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 doesn’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? I’d be curious to read some. :slight_smile:


#26

@Young_Lee Interesting, sorry to hear you’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 couldn’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 “cyst”, 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. I’ve been on prescription Prilosec for way too long, but the doctors don’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.


#27

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


#28

I have backpain as well. I took prilosec off the shelf and made my stomach better. Maybe it’s too much gas lol. I don’t know what’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 that’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.


#29

Gah, i’m so close to going back on Ami … 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 … I’m luckier than most … thanks for listening :slight_smile:


#30

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 we’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?


#31

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


#32

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 ‘underneath’ your balance is OK, it’s just playing up because it’s hyper and confused. I’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 I’ve been in bed for 8 days at times in a stretch unable to stand unaided.

Oh you really put me off ami though it’s nothing I didn’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 ‘I wake up feeling like a stupified owl’. Ami should be my next step but I cant do dozy, can’t wake up or blurry vision. No way. That’s about all I’d need, blurry vision and a disturbed balance equals a fall. Blurry vision could cause dizziness.


#33

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.


#34

Sorry. Maybe I’m confusing you with someone else, thought it was a video clip.


#35

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


#36

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


#37

Ha, ha, now you know we’re all going to start calling you “Rob.” :smiling_imp:


#38

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 that’s funny.


#39

Juan might come in useful in South America or Spain.