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#20

I do not take bisoprolol because it does not help. I forgot to mention I was also prescribed propranolol (Inderal) which I will start taking.

I won’t take benzos because I know it’s highly addictive and the withdrawal symptoms can be hell.

#21

Agree entirely about benzos. Good on you. Here in the UK they don’t get prescribed. Totally out of favour which for your reasons stated I’d say is good idea.

The Bisoprolol doesn’t help. It’s a selective beta blocker. Propranolol which seems tops for MAV amongst beta blockers is non selective. Must be some connection. I’m no medic so don’t ask me what. Not a clue. Goid luck with the propranolol. I take that myself. Just one word of warning. It can be a very slow worker. Mine took months so be warned and be patient. Don’t throw the baby out with the bathwater as they say. You may need to stick with it months. Helen

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#22

Thanks Helen and others. I will see if the Propranolol works over time.

Unfortunately you guys are the only ones who truly understand what I’m going through.

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#23

You’ve got it in one there still not to worry. You’ve a wonderful mature down-to-earth approach to it all so you’ll get through it all just fine I’m sure. Anxiety? What poppycock. Helen

#24

Xanax and desvenlaflaxine will work for VM as well.

#25

May be so but the dosage could be wrong because he’s not treating me for VM but for anxiety and depression.

Also my concerns raised above if you read it.

#26

the starting dose of Pristiq (50 mg) is FAR higher than the starting dose of Venlafaxine that we recommend (12.5).

https://www.dizziness-and-balance.com/disorders/central/migraine/treatments/venlafaxine.html

You can ask your doc for just venlaflaxine ER and start at 1/3 of the capsule. Which is what i did for VM. MDDS is a migraine variant too. I have same sensation as you lying down as everyone who has VM. My initial episode was set off by prolonged stress as well.

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#27

Thanks for the info. You are correct, the initial dose he prescribed is 25mg and then 50mg the second week which is too high. I think the most important thing is I get a correct Dx.

Btw, did the meds help you sleep?

#28

Amitriptyline did

#29

I’d be wary of introducing too many, ie more than one, drug at a time otherwise you won’t not what’s doing what.

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#30

Agreed. I’m currently on 20mg of propranolol each day and it seems to have eliminated about 90% of the weird gravitational pull when walking which I am grateful.

Now I just need to figure out how to stop the floating and drifting sensations when sleeping then I’ll be much happier.

#31

Just leave the Propranolol to do it. It will given time.

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#32

And what happened next? Have you improved at all? Helen

#33

Hi Helen,

Thanks for asking. I went to see a different neurologist, explained my symptoms and he said I don’t fit the classic VM/MAV patient. He said that VM is episodic and my symptoms are continuous so that’s different. I sometimes find that if I immerse myself in a task (distraction), I don’t feel the rocking/swaying. I tried to explain to my doc that if I lie down, I immediately feel like floating sensation. He said that it could be I’m thinking too much but in fact, I try not to think of anything when I’m sleeping!

So in sum, he said it was anxiety/stress related.

I guess I’m back to square one…I was on propanolol for about two weeks and had taken flunarizine for a week. It seemed to have helped a bit.

Now I am unmedicated but on a migraine free diet. I could function normally almost 80-90% of the time. I still have the floating whenever I sleep and sometimes the weird gravitational pulls when walking but that waxes and wanes.

I am wondering whether I should see Dr. H in Chicago. I am tired of docs saying I’m “ok” when all physical tests are fine but I don’t feel normal. I mean there is no blood test for VM/MAV anyway.

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#34

Doctors need to stop looking solely at tests and start looking at patients.

#35

I didn’t think flunarizine was available in the US. That aside, bit confused though. If the withdrawal wasn’t due to adverse side effects, why did you stop? Preventatives can take months to work.

Sounds like a trip to Chicago might be time well spent. Helen

#36

Because I was only prescribed for a week by the first neuro but as mentioned, his diagnosis was anxiety which is BS. The second neurologist did not prescribe any medicine.

I’m not in the US.

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#37

Agree!!

#38

Oh yes, the anxiety diagnosis. Every GP I have seen over the years has been totally convinced it’s that. It was only when I had chronic migraine that they took things more seriously. Whenever I’m feeling not too bad, I have no anxiety. I was discharged from a Neuro team that believed migraine could only be episodic and dizziness part of prodrome. They pushed me back on to ENT who gave advice and a leaflet of what cd’s I could buy to mask tinnitus.It seems to be a common belief amongst doc’s (I know quite a few and they all parrot that one back to me).

Good luck

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#39

MAV is continuous. Those of us who are episodic are lucky. I haven’t been in that camp for over two years.

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