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Suffering from MAV or PPPD

I was diagnosed with MAV June 2016 and PPPD November 2017. These appear to be very similar conditions and was told PPPD has a psychological component. The drug combination that had helped me before was Gabapentin with Amitriptyline, however, my new neurologist is tapering me off those and added Effexor and Valium to take as needed for anxiety. She is also referring me for a vestibular psychological examination and cognitive behavioral therapy. Has anyone else seen relief from symptoms with therapy or treating a psychological condition?

I found therapy helped on a limited basis. It more or less helps you cope with your symptoms. A frustrating aspect of this affliction is a lot of medical professionals will tend to write it off as “all in your head”

If there is an underlying condition (MAV) that goes untreated, it is very unlikely that no amount of psychological re-conditioning will fully cure it. That being said, things like yoga, therapy and lifestyle changes have been shown to help and have helped me in the past

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Agreed. My therapist is still at thought that it’s some portion all in my head, so I’m trying to give him more information to look up himself of food for thought. Nothing more annoying than someone you see frequently to tell you it’s all in your head and just find ways to cope with it.

So annoying for you!!! No it’s not!!

Yeah, we get into arguments about it. I told him to look up SEH. I even sent him that long YouTube video of the Canadian doctor. I don’t believe he watched it.

I think that if one invented something in ones head, why would it be dizziness?

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Creating a lot of stress on oneself can induce dizziness… I told him if that were the case for me do you think I’d want to purposely stress myself to feel this god awful way?
He would say I’m feeding into the condition.

Stress can definitely make you feel worse, trigger dizziness and perhaps it might even bring the condition on in the first place. There is scientific evidence that the inner ear chemistry changes with the level of ADH, the anti-diuretic hormone that is produced when one is stressed.

Is this a GP skip him. See a neurologist or oto-neuro or some ENT who knows what he is talking about.

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That’s interesting, that would make sense but I know personally I’m not doing much to be causing any stress.

He’s my therapist I’ve been seeing for the past 3 years.

Yup, not saying it’s stress.

I knew my Hydrops was developing over the summer before ‘MAV’ hit because I would get dizzy when stressed for a few seconds, but it would then go.

This gave me a clue that Hydrops was developing as I’d never felt dizzy before in moments of stress in my life! Of course, I didn’t realise what it was at the time! It was of course weeks later this became constant.

It’s awful :frowning: how are you feeling now adays?

Oh I’ve been pretty lucky, I’m waaaaaay better thank you, as reported here:

I have actually felt things get extremely slowly better quarter by quarter … its most odd but improvement IS happening but gosh sooooo slowly its only really recognisable comparing yourself at least 6 months previously and it definitely got worse for the first 9 months or so.

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I’ve noticed I can sleep better at night now without fear… also, I don’t have to eat immediately before sleep too in fear I’ll wake up all dizzy… I hope that’s a sign like yours that over time it will ease out.

Yeah, there are loads of accounts of it easing slowly … but you have to be incredibly patient! And a lot of people don’t consider themselves recovered even after a long time … but if it continues to get better and better you’d take that, right?

Indeed I would. Somewhat of a normal life back. Dating is still disastrous tho. Mentioning this and the tribulations it involves scares people right off.

Ps I’m glad you’re the forum admin. Everyone enjoys your company and your enlightenment.

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Ha, thanks a lot! I think it’s a pretty good crowd all round :slight_smile:

Compare this to some of the public groups on FB - everyone is so darn mean to each other on there!

On dating, well it might help to weed out the bad ones more quickly, the nicer ones may stick around!

And on the plus side, if you tend to drink less alcohol these days due to the condition then hopefully that will improve your judgement on who to progress with :slight_smile:

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Hahah I don’t go on the fb chats. Good to hear they’re not my fancy.

Haha I suppose. Trimming down too cause of it.

I’m still job hunting tho.

I need to start the exercise tho. I think I’m forming a hiatal hernia I need to see my doctor and diagnose it.

We all deal with this same stuff. My Neurologist just decided it is poly-pharmacy forgetting why I started taking these meds.

I would rather not talk about it because it boils my blood. As soon as doctor thinks that he can’t figure out what induces your symptoms, next thing is Amy. Please get a cervical x-ray and rule out cervical rib or an elongated C7 transverse process as it is the first step and many doctors miss it or when done it gets missed . Mine was misread years ago. Please make sure write exactly what I have written if the doctor order it. Elongated C7 transverse process can cause cervical outlet syndrome which causes vertigo.
Secondly , please see my Facebook page albums "Gracy Kalath ", I have posted a lot of medical information on Vertigo, It may be helpful. Good luck!

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