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There is hope!

#1

Hi all.

Long time reader but not much of a poster. I just wanted to share a positive story. Happy to answer any specific questions if I don’t touch on them… I’ll try to keep this post as short as I can!

I had my first episode of MAV on April 2016. It was after a night out with my girlfriend in Lake Tahoe (elevation) and I’ve never felt so scared and awful in my life. I continued to feel awful and suffer severe attacks for the next 8 months. Day to day I was constantly nauseous, felt like I was on a boat, hard to drive and many times where I could not drive or be a passenger, TV would make me sick at the peak of my attacks. The one thing that I have noticed is my symptoms have changed over time.
I was diagnosed with Vertigo at the ER during my first visit and then vestibular neuritis, but something still felt wrong. After some research on MAV (this website particularly!) and relating to so many symptoms, a friend helped me set up an appointment at Cedars Sinai (Los Angeles)with a nuerologist with many MAV patients. The most discouraging part of the appointment was her brutal honesty that the condition is VERY hard to treat. Every patient is different. After some trial and error, I was on 100mg of Nortrityline and 240mg of verapamil. I have been able to reduce my Nort to 80mg and verapamil has stayed the same. I am now 95%, if not 100% most days. I did notice as I got better, symptoms were brought on from anxiety. How could you not be anxious in situations you experienced before that were absolutely awful? For me, it was anything that had to do with travel. I am facing those fears and coming out the other side and finally enjoying life again!! I just want you all to feel like you have hope. I never felt more low and hopeless in my life than I did for over a year and a half… I couldn’t care for my daughter or even myself at times. This awful feeling will not last forever!

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#2

So glad you are doing better. Mine started august 2016 and i am making glacial progress. Thanks for the hope and positivity.

#3

Great to hear. Thanks for sharing. My MAV started in 2003. I didn’t find out what it was even until 2015 so no meds until early 2016, and it’s been slow but I’m 85% most of the time. Areas I still need to work on but I’m getting there. Helen

#4

Thanks so much for sharing :slight_smile: really needed this boost I’m 12 months in and doing a lot better but still have a long way to go. Could I ask was nort your first drug trial? Also did it take reaching 100mg to get to 95%? And lastly did you ever suffer from the dream like sensation outside like so many of us mav sufferers have had ?

I’m still yet to find my magic cocktail or drugs :confused: but it is good to hear it’s difficult to treat which must mean it isn’t just me struggling to find a med that works :grimacing:

#5

Hi there!
My first drug was verapamil and I went from 10% on my “good” days to 40-50%. I didn’t notice a big difference on Nort until I got to 60mg and above. Then it really kicked in. Once I was consistently at 95% most days I started going down by 10mg at a time. Once I went to 70mg I noticed some of those pesky symptoms coming back. I always felt like my eyes were never focused and movement felt like it made my eyes want to shake back and forth. My ears would also feel plugged all time so sound was off. When I walked it felt weird since I felt like I was always moving even while sitting. Then the trying not to barf was the worst. I definitely did not feel like I was in the real world in the beginning! Now that has gone away completely.

#6

Oh I’m so sad to hear it took so long to get the correct diagnosis! It does seem like a very new thing so I can imagine when you first had symptoms, even the best doctors were not aware of it. Keep chugging along. Time and the proper cocktail of drugs will continue to help! That and understanding what makes things worse for you. Best of luck and hang in there!

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#7

I think we can both say we had a really bad 2016!! Slowly but surely things will improve. I didn’t realize how bad the symptoms really were until I was out of the fog. It definitely makes you more thankful for the little things in life!

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#8

Totally!!

#9

Lauren thank you so much for taking the time to reply , you’ve made me feel so less alone as you sound so similar to me and it’s so reassuring to hear you can beat this :slight_smile: thank you so much . Also so happy to hear ur now living life again long may it continue and thank you for sharing we need more success stories :slight_smile:

#10

Oh please don’t be sad on my account. The first 12 years, when MAV was episodic, the attacks were pretty horrendeous but they would disappear completely between attacks and I was working and busy and never gave them a thought. I never got depressed and certainly never anxious about the ‘next one’. I guess I’d always assume the last one was the last one and it wouldn’t happen again. As you so rightly say MAV has moved on a bit very recently so if I’d been diagnosed ‘back then’ it would probably have said Menieres which wouldn’t have helped anyway. If I was to really complain abt the situation it would be the lack of knowledge of my GP and the lack of any consultant to want to follow up with me because that’s what stopped me recovering much sooner post diagnosis. I do resent a wasted 18 months in limbo on an insifficiently high dose of Propranolol. Success was thus delayed. Helen