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Full ears/face/head 😔


#21

Hi Ruth,

Oh no, that must have been really scary! Sorry to hear that! Its fab that usually you feel 99%!! What medication and you on and what mg?
X


#22

Yes, going up on each “increase”… I had an average of 3 “harder” days and as soon as I would get leveled out, it was time to increase agiain! I am happy to finally be at the right dose now so I can just take the days as they come and start the real healing! :pray:


#23

Hi Kirsty. Sorry think u misunderstood me! I feel like I am going to have a full blown vertigo attack 99% of the time!I feel dizzy most days.I am on a low dose of propranolol as suggested by the consultant Otologist and ent surgeon. He also said to try riboflavin, which I do. If that doesn;t work amitriptyline which I tried but makes me feel even worse or topiramate which I wouldn’t risk taking as it can affect the eyes and I am already really shortsighted. Not much fun! Hope u r having an ok day.R.


#24

Oh @oak17 sorry Ruth! I miss read that! I am so sorry your feeling rubbish at the moment, the lovely people on this forum do say sometimes meds can make you worse to begin with then perhaps start to help? So maybe try the Ami again. I know its not for everyone but personally I am willing to give it a fair chance. Hopefully can relieve some pressure and dizziness! Lets see…
Hope you start to feel better soon :kissing_heart:


#25

This is literally me tonight ! All of the above after being able to drive now my head feels full of air and pressure and so much light sensitivity ! It’s relentless and so up and down . Sending hugs


#26

Hi @Amylouise! Sorry your feeling bad too! Its beem awful since xmas… everyday! Literally I despair… I didnt know if I would be able to tolerate being a passenger yesterday as had to do 2 hour journey to see neuro on Monday - my neck rest helped alot but we stopped at services and when I got out of the car my head was so heavy I thought I would fall down! Luckily I didnt - then I had neck pain a got a frontal migraine!! :triumph:
Hope today is better for all of us!!! :kissing_heart:


#27

I used to get that too what really helped was wearing s heat pad on my neck for car journeys it actually really helped :slight_smile: let’s hope this week is better for us :pray:t3:


#28

Thanks Kirsty for your reply. Its horrible isn’t it and really challenging! I have had bouts of dizziness and vertigo for years along with migraines so its probably never going to go away properly. Too many things going on. I had a massive migraine yesterday and its still lingering, and I haven’t had any of my triggers. Sometimes it is just a coincidence when you have a better day maybe? I even have raw ginger tea everyday which is meant to stop a migraine in its track!Hope u feel better.R.


#29

I am so sorry you are feeling lousy. I know the feeling. The diet helped me but it took around 3- 4 weeks before I noticed a difference. So stick with it. It made a huge difference for me. I went off the diet around Christmas and started to slack off on my triggers because I was feeling better then it hit me. Going off the diet and eating dark chocolate, aged cheese and wine, the lighting in malls during Christmas shopping, my husband’s new car smell along with my usual motion sickness in the car sent me over the edge. It’s hard somedays to try and figure out what you exposed yourself to. I find when I get that dizzy, brain fog feeling and unable to drive, I have to sit still and not move my head too much in a semi dark room pretty much the whole day. Hope you feel better soon.


#30

Hi @rosjane yeah its been pretty bad since xmas (havent been able to work) or do much. However yesterday was my absolute best day!! No head pressure or ear pressure I literally couldnt believe it? Sure going to the supermarket was a little overwhelming but im far from well so I just rejoiced! I have had week were I was barely able to turn around in my own house so small mercys are massive to me! I hope you start to feel well again!! Soon :crossed_fingers::crossed_fingers: well for each and everyone of us!! :kissing_heart:


#31

I know how you feel. I have not been behind the wheel for two years. I feel like I’m getting closer. I’m slowing getting taken off Ami. Now and on Botox. I get my 4th treatment tomorrow. I notice my headaches have gone down a lot. I still have a lot of pressure in my head sometimes. I’m still on Verapamil and Topamax and vitamins no wine and I gave up coffee. I’m also taking magnesium. I do yoga and meditate. I just wanna drive all I do is depend on my hubby and friends and Uber. When is it going to end?


#32

Hi @polkadotgirl it sounds like your getting there coming off the Ami? Did it help you? I got botox tomorrow I don’t feel good for the first couple od weeks after but it is my 3rd round so im hoping I will start seeing some improvements!! Ive recently started the diet and on Amitriptyline! Bought some snazzy polarised glasses today too to wear in bright busy places. I have definitely seen some improvements so I pray for everyone they have the same! Thank you for your reply! :wink: :wave:


#33

Omg yes I feel cruddy the first two weeks after to then it levels out. I have not done the diet yet. I’m an vegetarian already so I hate to think what else she would take from me. It was a blow taking my wine away :pensive:. She is trying a new technique and keeping stress away from me. My Neurologist went to a seminar and learned that stress is a big part. So we are really doing that. I also do a lot of essential oils to.


#34

Do you find botox is helpful for you? The diet isnt so restrictive tbh, you soon get used to it :+1:
Right now I feel positive to keep on doing the diet doing the botox and keeping on with Ami… :+1:


#35

That is great news! I am so happy for you. It’s encouraging when you feel normal the next day after a severe attack. I don’t stay in the supermarkets long. Get what I need and leave. I lost track and stayed in there over an hour because I started reading label ingredients and when I got to the register everybody and everything was moving. I flew out of there as fast as I could to my car. Stay encouraged! smiley:


#36

I never heard of anyone else experiencing my same sensation in my head. I honestly thought I was the only person in the world! My brain feels like it is squishing back and forth inside my head. The sensation increases with head motion but lingers after I am in bed with my head absolutely still. I’m sorry other people have to experience the same thing, but it’s nice to know that I am not alone.


#37

The Ami dose should be raised every 6 weeks …it takes that long for each dose to fully get in you’re system. I was a nurse prior to becoming ill


#38

Hi
Botox also made a huge difference to me. Ive had 3 treatments. I had 4 years of Daily Chronic Headache along with all the other MAV symtoms. Along with Botox i take Gabapentin & Venlafaxine. And i take taxis to and from work work as my 4 bus journeys a day were crippling.
Im sure you’ll be driving soon!


#39

Good luck with the Botox…
Jo