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Specific Illnesses & Conditions VM/MAV
1

Hi everyone…I have been reading on here for awhile but think it’s time I introduce myself. Last June I attended at outdoor concert and felt sligtly rundown before going. During the concert I noticed a sharp pain in my right ear whenever my husband would talk to me in that ear. I also had ear fullness… When I woke up the next day I still had ear fullness as well as a hissing tinnitus and sounds were coming in very loud on the right side. A friend of ours is an ENT so I went right in to see him and he said the stapesius muscle that clamps down for noise had basically quit working. He put me on a high dose of prednisone and in a week it started functioning again. Fast forward a couple of weeks and one night was walking to the mailbox when everything in front of me looked like it was bouncing. The next morning I woke up to a spinning sensation…very dizzy…but never got physically sick. The spinning got better but was left with heavy head, foggy brain, neck pain and an off feeling. I was sent to a neuro-otologist. I’ve had MRI and CT scan which both were normal. I had a VNG test and have a 22% loss on left side…funny thing is the right side was my bad ear. They diagnosed me with vestibular migraines and put me on 10mg of amitriptyline. I’ve never had migraines but do have a family history of them. Within a few weeks I continued to feel better and was feeling like my old self. I was convinced it wasn’t migraine related at all and figured it was a virus…even contemplated going off the medicine.

So I’ve been feeling great until March of 2017. I was put on Metronidazole (7 days) for an infection which the pharmacist says can cause dizziness. I started getting dizzy but thought it was probably the medication. It’s now mid April and I’m almost back to where I started last year…I don’t have ear fullness but I’m having a lot of visual disturbances…feel like my eyes can’t catch up, heavy head, terrible neck pain and pressure on my eyes. The doctor has increased my amitriptyline to 15mg and I still have not noticed any difference after 6 days. Could the meds have just stopped working?

I just feel so frustrated that I was what I thought completely better and now feel like I’m back to where I started. To make things more stressful, we are leaving for a family vacation on Thur and I’m nervous to go. Any advice or insight would be greatly appreciated. You all seem so knowledgeable on this and I could really use your support. Thank you for letting me vent.

2

Its about finding what medication works best for you… I use propranalol. And it does sound like you have MAV so you are in the right place for advice and tips…

3

You could up your amitriptyline some more - I take 20mg. That’s still a low-ish dose. It really helped me once at that level. See how it goes for a while there and, as Paul says, if you don’t get on with Ami (and you won’t know for a month or 2) you can try something else til you find the perfect med for you.

4

I think I’m just a little nervous because the ami was working before at 10mg and I can’t figure out why it stopped. I’m pretty med sensitive so could only handle 5mg when I first started on it. I do know I need to be more patient though. Does it sometimes get worse before it gets better when you increase the dose? I have a feeling this all stemmed from that inner ear trauma. I do have tinnitus too but that only bothers me at night or when I try to listen for it. I also have way more visual problems this time than I did before. Appreciate all of your input.

5

Inner ear sounds right to me (Though not everyone agrees)

Yes, sometimes upping a med makes it worse before it gets better.

10mg is a very low dose usually, but everyone is different

6

My advice is to not try to analyse every litle thing that happens and get a broader picture - you will have some better days than others and worse if fact with no apparent reason - but worrying about it also brings on its own downward symptom spiral. Try to stay positive and assure yourself that once on the right medication and the right dose - you should have a normalish life - there will be the odd blip …but generally you should overcome most of the issues. Understanding of what is happening to you and knowing that its not your fault will put you on a path to general all round improvment…

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7

Thanks so much…actually just reading words of encouragement help. I must say when this came back I’ve definitely been more anxious which I know does not help things. Anyone have terrible neck pain or know of ways to resolve it?

8

Neck pain for me was a sign brain was using eyes too much. Ami resolved it. I would try going a little further up on Ami when you are ready but discuss it with doc. Might go soon that you are on 15mg.