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Full ears/face/head 😔


#1

Just when I thought I was getting better this morning has been dreadful with massive ear fullness making me so dizzy my head feels like its full of water wishing around.
Moving my head is a massive task and making me motion sick :roll_eyes: when is the Ami going to help and started the diet 2 weeks ago. Just feel like its a never ending journey… a few days ago I was able to drive. Today? No chance! :disappointed::triumph:


#2

This is how I feel 24/7! Ears full all the time that I can even sometimes hear my voice in them! Sorry your suffering. I’m due to start ami soon! Have you had any bad side effects?


#3

Hi Natalie,

Yes, it makes me feel dreadful. I mean for the last few days I have had really intense pressure in my ears, face and head its intolerable to move to much and if I do I feel like elecric surging through my brain :face_vomiting: hopefully it will pass along during the day. Im hoping to go up with the ami on Monday when I see my neuro. I did have some, dry mouth, groggyness. Nothing too bad! I hope it helps you :grin:


#4

It’s so horrid isn’t it! I had an attack yesterday like when you have the flu and your brain is sore and been rattled!! What dose did you start on? And how long have you been on it?


#5

It is because it causes dizziness your head is like a seesaw so hard to stabalize. I started on 10mg and am currently on 20mg so still quite a low dose I started that on the 24th December so only 4 weeks. Days like this feel like set backs and that upsets me, although I know MAV is constantly changing its so difficult to manage! :roll_eyes:


#6

Sorry to hear your having a bad spell. I feel very much the same at the minute. Head full of water wishing around good description and when you stop moving it water still wishes around for few seconds.
I’ve had mixed success with Ami 20mg kept me 90% for years now it doesn’t do much other than help me sleep. I’m holding out for Effexor now.


#7

Yes I bet it’s disheartnening but I have heard that set backs happen until everything stabilises. Ok thanks I’ll start on low and titrate up.


#8

Hi Alex. When you say your were 90% for years do you mean you felt normal most of the time with issues here and there or do you mean you were 90% everyday. Hope that makes sense :joy:


#9

@Alex7
Hi Alex! Yes its rubbish, the bad days of unsteadiness/dizziness passed and then I was left with really intense head/ear/face pressure and it started as soon as I woke up I took a motion sick tablet in hope it would calm my vestibular system down a little, I think it may have. I will have to remember to walk around like a robot for the rest of the day… just hope it doesnt linger for either of us!

So your trying Venlafaxine? I was going to speak with my neuro about this on Monday see what she thinks?


#10

Are you sleeping ok? Yes take it easy for rest of the day. I’ve had mine since November now don’t think VRT exercises I was given to do helped.
Yeh I’m going to give venlafaxine a go had 13 months of Ami and Nort with no success so I guess I’ll just keep ticking them off.
You’ve not been on Ami long though so it might start to settle things down soon.


#11

I am sleeping better that ever I have to say the Ami does help me with that! Is it true that before you start to feel better you may feel worse? I hadn’t heard that? I am just pottering around the house today not going to even attempt going out places or driving :-1:


#12

MAV changes constantly. It’s up and down like a rollercoaster. Some drugs also cause setbacks/side effects which extenuates the ups and downs. With luck once you are on the maximum tolerated dose of preventative for a good period (ffour months is often quoted although some drugs seem to kick in sooner) hopefully you should begin to see a general upward trend of improvement. Helen


#13

@Onandon03 I certainly hope so Helen. I am pleased to be tolerating the Ami well and maybe I do need a higher dose aswell as the Botox and who knows maybe another drug added. Only time will tell I suppose. I want off this rollercoaster now :expressionless: I am seeing neuro Monday and Botox Tuesday…


#14

Amitriptyline migraine prevention doses run up to 100mg it seems. Quoted range 50-100mg. So I guess 20mg could be considered just licking the bit of the sweet off that was left stuck to the wrapper!

Oh. Don’t we all, eh. Helen


#15

Ha, yes so it may seem! In that case I have a way to go! @Naejohn did say that going up was a hard few weeks so maybe it is just getting settled everyday is a massive struggle at the moment -when it gives me a break you forget all of this and think it was a nightmare, its only when it rears its ugly head that you get pulled back in to uncertainties it brings. Are you still having 90% days Helen?


#16

I’d had 7/13 virtually 100% days from Nee Years Day but it’s slipped right back currently as outlined in my thread ‘caffeine withdrawal and vertigo’. Helen


#17

Oh dear… I am sorry your having vertigo!! Its horrendous! This should wear off if it is the caffeine though? Its rubbish that you’ve been put out like this when your only trying to help yourself!! I have my fingers crossed for you that you get back to your 100% days!!!:crossed_fingers::crossed_fingers::crossed_fingers:


#18

Yes, very normal to have lots of setbacks. I can’t count how many times I’ve said to myself “hey, I feel pretty good right now, probably in a few weeks I’ll be back to normal”. And then it gets worse for a while instead. And then I say to myself “this is permanent, I’ll never get better!”. And that’s MAV, sort of like the movie Groundhog Day, but even in Groundhog Day you see on average that Bill Murray gets better and better at life. Remember you will see the most progress over a 3 month period, not a 3 week period. I just got back from my trip on an airplane it wasn’t really a big deal, hardly dizzy and hardly a headache. 3 months ago it would have been tough. 6 months ago it would have been horrible… 2 years ago impossible! Immediate panic attack driving to the airport :grinning:


#19

@ander454 So good to here your aeroplane ride went well! I would love to get to that stage! Yep, your right I try focus all the time on tomorrow will be better but you can never really tell! After years of ups and downs I feel like ive had enough! I guess we all do when its bad. For about a week the falling through the bed had gone and the unsteadiness too I was left with really intense pressure in my ears/face/head today the falling through the sofa has returned and so it goes on… maybe im withdrawing from my diet too as I have restricted caffeine and doing the diet so… could be something to do with that? Who knows, could just be MAV being its usual horrid self!!


#20

Hi Kirsty. So sorry you are suffering. I had a bad bout of vertigo this afternoon,think stress plays a really big part. Feel really on the verge 99% of the time but then have a full attack and it really sets you back. R.