Hi guys! MAV/CSD Success! :)

Hello everyone! My dizziness started when I was 13 in 2003 after having strep throat and severe sinus problems and was prescribed strong antibiotics and antihistamines. I felt like I was on a boat when I was not. I felt like I was moving 24/7 when I was not. I stopped being able to attend school and hanging out with my friends. I also could not go on boats, planes, and even baths made it worse. My life was fully impacted by the dizziness. I am 26 now. I want to tell anyone who is reading this not to give up hope! When I was 17, I first started using TheDizzyLounge web forum for support. Someone from there suggested this web forum to me. That year I had seen Dr. Timothy Hain for the first time. He, along with the other top “dizzy doctors” in St. Louis diagnosed me with Vestibular Migraine. otherwise known as MAV and “silent migraine”. At the time I did not get any headaches. But, no medicines were working. Topamax and Amitriptyline did nothing. Verapamil, Keppra, and Inderal made it worse. I’m talking to the point where I was running into the walls when I tried to walk. Depakote and Lamictal didn’t work and BOTH gave me Stevens Johnsons syndrome. In 2008 I started getting chronic daily headaches/migraines with aura. In 2010, I finally went to the Mayoclinic. The neurologist agreed that it was indeed Migraine Associated Vertigo since the dizziness did get worse with migraines. BUT, the other doctors diagnosed me with Chronic Subjective Dizziness. I started using SSRIs and with Paxil, I am back to being able to going on a boat with hardly any dizziness! I grew up on boats and going to the lake every weekend. THIS IS HUGE FOR ME!!! The dizziness is 95% gone. And I hope by sharing this with you "MAV"ers, maybe it will help you!

All of my love and prayers for you,
Leslie

PS. I still get chronic migraine headaches. I would greatly appreciate any suggestions/support.

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Hi,
What SSRI’s are working for you? So, it sounds like your taking an SSRI and pail together? I think I’m suffering from possibly MAV but definitely CSD/PPPD since my last vertigo episode last August. Since that episode everyday I’ve felt if bakance woozy 'dizzy" it has gotten better over the last nine months, I dint get as nauseous Jr. Feel like I’m being pulled to the right or forward, etc. I think stress and anxiety due to having this manes it worse. Ive had many tests and an MRI. Been thinking about asking to start either Zoloft or nort. Tried a brend period of Xanax, jelled a little then plateaued, tried also a brief trial of Effexor XR, horrible side effects!! TIA

Effexor made me feel horrible too! I recommend the Paxil or some other SSRI.

Dr. Hain is a bit of a celebrity in this subject, some of the best online explanations of dizzy disorders and treatments i’ve read.

Great to hear about your success, did you have any Aural symptoms like tinnitus?

James

Hi,

Your symptoms sound similar.

Any issues with congestion (rhinitis), sinus headaches, eye strain or blurry vision?

Additionally, any issues with air pressure?

I took Effexor years ago in college, can’t say I remember how it made me feel. (At that time, I didn’t really have this MAV issue.) However, I’m currently on a very small dose of Pristiq, which is almost the same thing (Effexor is venlaxafine and Pristiq is desvenlaxafine), and it definitely has made things a little worse for me. I just got a new migraine neurologist who confirmed that it is probably not a good medication to be on if you have MAV. I am slowly getting off it.

Paxil is an SSRI. I would recommend that. :+1:

I agree. He is wonderful and brilliant!

I had some problem with air pressure and bass sounds so I had tubes put in. In 2012 I developed a new type of dizziness. It turned out to be BPPV. I get that every now and then but the maneuver done in the doctors office as well as yoga takes it away for a while.

I had horrible allergies and Benadryl and other antihistamines made the dizziness worse. So I got off of all of those and took Quercetin and Vitamin C and my allergies went away! :grinning: HORRIBLE problems with air pressure.

I had some sort of weird sound in my ear and major ringing after car rides. But I’m pretty sure that’s from the tubes.

Thank you very much for answering all my questions.

Lastly, did you ever experience trouble reading due to the dizziness? I experience oscillopsia and nystagmus (my eyes do not track objects very easily). As a result, I have trouble reading. A few short sentences are fine. However, books are completely out of the question 90% of the time.

Thanks again,

It was like trying to read on a boat. Feel free to ask away! I was a bit shy to post at first, but if I can even help one person, that would be wonderful!

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I get really bad sinuses always congested morning noon and night all yr rd

My dizziness started when I had congestion and sinus problems.

Update: I can no longer take Paxil or SSRIs. Please read my blog that explains it all. https://lesliehorkman.tumblr.com/post/163751246926/welcome-to-my-life

Since your dizziness is correlated with the sinuses and congestion try fixing your breathing first.
The easiest way to achieve that is to start taping your mouth at night, using high quality 3M 1 inch micropore tape.
2 down, 1 across, available on amazon. Most pharmacy tapes are not good enough and won’t work.
Effects are gradual, anxiety that you’d suffocate and die during sleep on nights 1, maybe 2, then gets better and better. 3 weeks later you should start feeling healing in earnest. 2 months later you’d dub this a life changer.
I had suffered from sinus issues for 30+ years, tried serrapeptase, low carb diet, fasting, and other drastic measures but nothing compares to the powerful effect of fixing mouth breathing and over-breathing. It addresses the root causes of congestion, polyp formation, sinus pressures.
Aside from mouth taping make sure you suppress and transform yawns, sighs and noisy breathing, they are all bad for you.

Did you get diagnosed with MAV?

If you are asking me, the answer is yes. A year after getting a diagnosis of MAV from a neuro ophthalmologist
it progressed to a worse manifestation, known as PPPD, which was a more recent diagnosis by a MdDS specialist. I don’t wish PPPD upon anyone. It is still with me despite having attained permanent cure of sinus issues.
Maybe I should give it more time – deep calmness and banishing fear seem to help.
Address your MAV before it turns into something worse.

I don’t think MAV exists as people believe it to, personally. I believe it’s secondary hydrops which better explains the chronic, ear centric symptoms and spontaneous emergence better than any migraine explanation. And yes you need to address the cause of that. In my case it was a fistula (which I suggest is a lot more common than medical dogma gives it credit). Not much you can do with a healing fistula than let it heal. Surgery is an option but not that reliable. It’s getting better slowly, I’ve even been able to halve my meds so far. Vertigo has gone. Most imbalance has gone. What is PPPD?