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


#1

Morphed again!

There are times in the day I can feel almost 100% (if you ignore the mild tinnitus), usually in the middle of the day and afternoon.

In the morning I have some imbalance, but in the evening I can get absolutely killer imbalance which eventually makes me give up on the day and sends me to bed early.

Anyone get this pattern? (I appreciate feeling close to 100% is probably unusual!!)


#2

For quite a while I would be O.K. during the day - but start with spins/imbalance late afternoon and evening - clearing once I finished with chores and sat still. Thought it was a pattern…then viola! Started happening in the morning before and soon after rising…The only constant thing in my case is change! Hope it soon settles for you, James!


#3

ever single day…when i am tired, i get imbalance from 7 to 9PM…and then i take Ami magic happens and imbalance stops…and then i get all feisty and post with vigor online and stay up late !


#4

It’s tempting to go back. But the issue would be getting up in morning. Maybe 5mg?!


#5

also i am sure my day time imbalance is kept in check by effexor. In general i am more dizzy when tired.


#6

Same here, this condition has morphed so much for me. It’s good and bad. Anxiety provoking when new things arise, but reassuring (as much as it can be) when something is going on that I can’t stand, because I can hope that it will be gone in a few days to weeks to months. LOL, yes, so reassuring.

@turnitaround I do have days where my symptoms just get worse and worse as the day goes on. I think if I didn’t have evening Xanax that would happen every day, however by no means am I recommending Xanax! But from what you’ve said in your posts, the Amitriptyline helped your imbalance the least. So if that’s your biggest issue returning at night, why would you want to go back on Amitriptyline? Unless the imbalance was better on Amitriptyline than it is now late night?


#7

It is tempting Jess, but I don’t miss the constipation and the thing it does to your ‘brightness’ level.

Yeah, so weird how it keeps changing.

Perhaps one day it will change into no symptoms at all?!


#8

What I noticed by taking ami for 2 weeks now is it’s making the imbalance less noticeable. First week was horrid and was more dizzy unlike the 1st time when I was on ami 4 months ago. No more dizziness this week but imbalance is still there but less noticeable.

My view on that is if there is a med that can put me up to 90%, i’m willing to take it for life.


#9

Yes that’s fair enough although one of my oto-neuro’s (ironically the one I didn’t always agree with) told me that I should try to stop Ami at some point because taking it long term was “unhealthy” although she failed to say why.

So that fed into my decision to stop it. Of course spontaneous improvement also added to that reason.

I totally get why you would continue with it because ultimately you are trying to optimise your quality of life and of it’s better on Ami then go for it!

In any case you maybe at an earlier point in your recovery curve so it’s something you can review later in any case. If you still need it in 3 years time then fine, it not, you can drop it.

I know for the period of time I took it it was brilliant, and got me out of the hell hole I found myself in. I shall be eternally grateful to its inventor but also to the doctor’s who first decided to apply it to vestibular patients (inspired!)

Hain is clearly a big fan of the drug btw as it’s featured prominently on his drugs for vertigo page.


#10

Totally agree James. I am at a desperate point right now and my anxiety for meds has gone down and looking for more of a hardcore med like effexor or propanolol at this point. My parents have been on beta blockers for over 20 years and they seem to be doing fine hence my interest in it. I trust that you will recover in no time and wont be needing meds.


#11

Yeah doctors need to take a balanced view on these things.

I’m sure you’ll improve too!

As you know I’m light years ahead of two years ago.

20 years, wow! Good for them. But also sorry if they’ve been suffering.


#12

How did you manage that? I must learn your trick to less anxiety about meds!! I’m glad to hear you’re noticing less imbalance on the Ami, that’s great. Sorry the first week was horrible though, how did a horrible first week help your anxiety about it go down?

My Ami trial did not go well at all. I just got increased dizziness and imbalance (stumbling around) to the point where I didn’t want to get off the couch), got extremely jittery after each dose and at random times throughout the day or not which came with panic attacks, decreased sleep, and nausea that started off and on, got better, then got worse again and unrelenting. Not to mention I had an actual headache during it and that pain was the worst I’ve ever experienced for my migraine headaches. I know the starting of Ami just heightened it, it could have even been heightened from the jitters Ami gave me, but it was still almost enough pain to send me to the ER. I’ve never had to go to the ER due to a migraine headache, just one time when the antibiotic Cipro gave me a horrible headache.


#13

@turnitaround they havent been suffering. They are just taking it for high blood pressure.

@Jess09 The reason my anxiety has gone about meds is just a tweak of the mind. I just thought tomyself that this will help me in the long run and whatever side effects it may have, it will pass which it did. I had dizziness and weird head pains last week and magically it disappeared this week and i know it was the side effects. I am sorry you went through a terrible experience but you have to just dont give a F and ride it out. Ami also has toned down my pulsatile tinnitus and i believe sensitive to noise has gotten better. Im only 2 weeks in and its already improving. Also what really helped me about med anxiety is you take it, dont forget about it. Pretend you never took it and go on about your business.


#14

No distinct pattern with me though usually, unless I’ve wound it up, I’m better in the evenings, the later the better. The times I’ve said if only I could be as good tomorrow morning. So mornings must be my worst. After more than 3 years 24/7 dizziness, this last few weeks I’ve been steady unless I wind it up.

You have overdone it. Pushed the MAV too far. Change of activity maybe? More looking down. I found this last year with the new puppy. More standing about, rather than sitting perhaps. Standing up, standing still is much more challenging to balance than walking around. In Tai Qigong there is a position called ‘embrace the tree’. It is said 25 minutes of ‘embrace the tree’ is all the exercise a strongman needs. It exercises everything, all the muscles, the lot apparently. It’s gruelling. ‘Just’ standing perfectly still in a refined stance where you appear to have your arms hugging an imaginary tree.

MAV likes routine/consistency. Every day to be the same. Yesterday I went into a supermarket shopping for about 15-20 minutes. Totally on impulse. MAV doesn’t do ‘impulse’. Today my head is woozy, not one of my usual symptoms at all. I don’t normally frequent supermarkets. I expect yesterday may be my 10th supermarket attempt in nearly 4 years! So MAV will make me suffer for it, that break with routine. With MAV I think that’s pretty normal, normal for me at least. Maybe new for you.

Somewhere you are pushing it too far quicker than it wants to go. I got up two mornings running more than an hour before usual this past week and by 9.00pm I was physically tired and starting to spin. Normally I never feel tired before bedtime and am still bright at 11.00pm and not dizzy. Just another example of this pesky condition.


#15

Aren’t consultants infuriating. All these ambiguous comments. I’ve had those. You spend weeks afterwards wondering.

I don’t suppose many people on this forum will get their condition to settle without some drug intervention. We don’t have much choice. I didn’t. If you’d told me 5 years ago I’d be taking betablockers, I think my teeth would have curled but then again if you had told me I’d be house-bound, unable to stand, look out of the window because of the light, etc, etc, same would have applied. Long-term these drugs must have huge side effects. But it’s drugs or no chance of proper quality of life. No choice. I think ‘Don’t worry, it may never happen’ is a useful phrase at the stage many of us are currently.


#16

@Young_Lee Wow, you’re an inspiration! Great work! I’ve been trying so hard to just turn my mind off about the medication side effects. I’ve gotten a little better since I actually started trying medicines again, but I have a long way to go. I guess another thing that my mind won’t turn off is that I’m starting everything at such low doses, which is needed for my body, but then my brain keeps thinking about how many dose increases I’d have to do and how many more times those initial side effects will come back with the dose increases. Taking it one day at a time hasn’t gotten into my head, unfortunately. I also need something that doesn’t make EVERYTHING worse and give me the 3 worst non-serious side effects out there, in my opinion (nausea, increased dizziness to the point of barely being able to walk and stand, and jitters).

I am so happy that you’re already seeing improvement on Ami after 2 weeks! What dose did you start on again? Does your doctor want you to increase?


#17

@Jess09 another strategy I have seen is strong benzo use in first month along with preventative. Slow benzo tapering while increasing preventative to therapeutic levels.

I know you have a xanax problem at hand so take this FWIW


#18

I started at 5mg and after 2 days bumped it up to 10mg. I dont have a doc currently and self advocating at the moment. Last time i heard from the doc’s assistant was about a month ago wanting me to reschedule for a ecog test and said that either i call or they will call. I was like meh. They havent called yet but if they do im going to refuse the retest. I do need a GP at the moment that is willing to let me try some meds that i want. Is it simple as picking a GP of your
Choosing and explaining the condition you have?


#19

@GetBetter Thanks for that input, yes I too am aware of that approach and really wish I could use it!!! lol. Unfortunately I take 2 doses of Xanax a day normally, so they probably do help a bit but I don’t get any “extra” help. I’m afraid if I took any extra Xanax to help that I’d have trouble getting off of the extra, especially if the medicine I try doesn’t help with anxiety (ie if I go for Topamax or something like that) If I do try an SSRI or SNRI I can certainly bring that idea up with my doctor, thanks for reminding me!

@Young_Lee Wow, way to go that you moved to 10 mg in 2 days!!! I couldn’t even start at 5 mg. I still think there’s some underlying cause to my sensitivity other than anxiety. Especially because when MAV started for me I wasn’t originally sensitive to meds at all. I was taking them in the middle of the week, having to work the next day; I took Zoloft and felt absolutely nothing (good or bad!) and stayed on it for 4 months. It was a magical time lol. Ever since I tried to taper from Xanax, was switched to a longer lasting benzo called Librium to do so, my stomach got messed up (GI doc thought I had an ulcer, I got an endoscopy and it was all normal) and my stomach has never been the same since. After that episode (during which I lost 25 lbs in one month) it took me a year to be able to eat more of a normal diet, still avoiding some migraine and heartburn triggers. Ever since then I’ve been sensitive to all meds, even cold meds I had taken my whole life that used to help MAV sometimes. But no doctor is buying on to my theory. I feel like I’d have to go to a Naturopath just for that issue alone, as that is more of what they do, look for the root cause. The GI doc just looked at me like I was crazy when I tried to explain my theory.

I don’t have a great track record with my past few GPs just prescribing MAV meds, but a lot of people on here seem to. My current one wouldn’t prescribe a beta blocker (after my former neurologist recommended it!) without me seeing a cardiologist first, then she still wouldn’t prescribe it after the cardiologist gave the go ahead. I do have a wonderful psychiatrist that I started seeing during the Xanax taper trial that I still see as he is willing to prescribe MAV meds for me for trial and error. So that’s my approach, for what it’s worth.


#20

It’s interesting that you mention your stomach. I too have some kind of issue ever since a doc gave me something for my heartburn med for the esophogus. I had some left chest sharp pain whenever i put my head down to the left. I forget what they gave me but it worked and i started having some issue on the left gut area. They said the side effect of that med was stool in your intestine so i started stool softner for a week but never went away. Took ct and was clear. Had ultrasound and was also clear. Next was endoscopy but was scared so didnt go through with itlol. This was like 6 years ago and still have this issue. It doesnt hurt or anything but feels like there is something in the left region and it feels better when i eat. Damn meds lol.