The Vestibular Migraine & Secondary Hydrops Community
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Feeling worse


#1

Hey, guys, Does anyone know a place/ social platform where I can get support online - in live chatting. Is there a facebook group? I would really like to support and get support when times are hard! Like right now. Thank you very much


#2

I’m going to respond IMHO to say most people are usually always watching the board but don’t always have an answer. For this, this is the only platform I use. I avoid FB like the plague. People try to riddle into your business and it can get scary/creepy.

What’s happening with you as of now?


#3

Thank you for responding. I have been better for some time. Then Daily nausea and dizzy spells started last Sunday. It just sucks, because I have a business to run, and I am not capable of writing or doing any creative work. I try to cheer myself up, but that dont really last long. I feel limited.


#4

Vestibular migraine professional is a group on Facebook. Founded by same folks as mvertigo.


#5

Unfortunately, it waxes and wanes to good and to poor to good… Are you taking any preventative supplements or preventative prescription medicine?

I’m currently enduring a bad lapse myself.


#6

I am sorry to hear that. How long have you been struggling, if you don’t mind me asking? If you are not comfortable saying that that’s okay. I’m talking a lot of natural supplements, that my doctor told me to. No preventative drugs at all. So, Im currently doing the supps, the oxygen therapy and the diet.

I’m a competitive bodybuilder, Im not sure how the drugs would make me feel. I train 6 times a week offseason, and 12 times a week when Im getting ready for a show. Obviously, no competing for me right now.

What’s your experience with the medicine?


#7

Wow, that’s intense. That’s A LOT of stress to be added and a lot of usage on the body.

What are you taking for supplements? I’ve never tried the oxygen method mentioned. I abide by the migraine diet pretty strictly. I can have milk safely which is nice. I’m trying to dabble and see if I can have other cheeses-- I would like to see how ricotta treats me and fresh mozzarella. Ricotta is on the ok list, but you never know how you might react.

I only take vitamin B2 400 mg. (Helped with my intermittent ear pain - that I do know, kind of smoothed out the dizziness I think as well) I had an issue with coq10 and magnesium pills, as James says, don’t let that deter you though from trying them.
I’ve never used any prescription meds since I feel I can muster and strive without them, but I suffer like everyone else but slowly getting “better” again. I’ve had this since June 2017.
I usually go for car rides every other day or so and walk around my parent’s place and my place(waiting for it to get warmer to walk my dog again)… when I cook or know noises will bother me I’ll wear ear plugs (when I bring my dog for a ride she always barks for a good half mile into the ride) (also my hood vent for stove sets me off too so I cook with ear plugs). Hearing even the sink lately has set me off but I’m getting to closer to baseline so the duration of time for how long it takes to set me off is reducing.

As a note, everyone usually tries Ami to start. It’s a great med for this condition. Our forum leader got up to 20mg a day and liked it for I think a year-- year and a half? And his symptoms were reducing over time so he was able to titrate off the meds.


#8

(@Liza_Kulimanova) Liza,

I do better on the Stanton Migraine Protocol which is a pretty strict keto (6% carbs:27% protein:67% fat) plus careful electrolyte balancing. It’s counter intuitive because it’s salt heavy, but it helps me. In January I was totally disabled from MAV and losing my business, which is creative and screen heavy. Yesterday I rode 45 miles on my bike with a 1,300’ gain. Today, I’m working on the computer. I’m not 100% and this screen time will end in 4-5 hours rather than my previous 10, but I’m not on any meds and am improving.

I’m thinking a competitive body builder would have no trouble with the diet, if you aren’t already on a protocol. I don’t follow the other migraine diet at all because other than my known allergies, I don’t seem to have dietary triggers beyond too much caffeine. Cutting out glucose, fructose, alcohol and all the simple starches is enough for me. I barely have headaches now and haven’t had a migraine this month, down from 8 with aura in January. Most of the other MAV symptoms are better, too, though not as remarkably improved as the pain parts. Worth a shot.

Emily


#9

@Liza_Kulimanova Good news for you is exercise does wonders for this condition. You are OD’ing on exercise which is good. I know a person on youtube who beat this beast only by training big time. I think the workouts double as VRT as well.

Watch out for what sets you back. even small things like did not drink enough water during workout, perfume of person next to you, upset stomach and such can set you off


#10

Thank you for heads up! I havr been really payong that much attention. But I know I feel worse after hours of working on my lap top, and working long shifts at the bar.

Btw, whats VTR?

I honestly think my work outs been humongous part of my fast recovery. Since the first episode happened, I never stopped training.


#11

VRT = vestibular rehab therapy. It’s a form of physical therapy for the balance system.


#12

@Liza_Kulimanova What is the oxygen therapy like? Is it something a doctor started you on? One of the first things my mom always thought about my condition was wondering if I should be put on oxygen here and there. 2 years ago I had to get an endoscopy thanks to some secondary upper abdominal pain from this condition, possibly the anxiety of it all plus I was trying to taper down from a benzo and had bad withdraw effects. Anyway, I felt SO much better the night after my procedure and I had oxygen during the test and a good hour after it. It always made me wonder if oxygen would help or if I just felt good from the letdown of the anxiety from the procedure being over (I was really worried about it as I had never had anything like that done before).


#13

Yes, he started me on that and told me I need 20-40 sessions. Oxygen helps to rehabilitate the middle ear and helps with brain fog. It’s definitely worth it. I’m going twice a week - only because of its 125 $ a session. You should definitely check it out. If you have migraines - it gets rid of them too. People who have autism, brain injury, PTSD, balance disorders benefit a lot.


#14

Which facility do you go to get this? Are there any in the US ?


#15

The term hyperbaric meaning pressurized, it scares the crap out of me. With all the talk of fistula and inner ear pressure I run from anything pressurized :slight_smile:


#16

My friend went deaf in one ear overnight a few years ago. Nobody knows why. He tried the hyperbaric chamber. It didn’t work, he’s still deaf, but I can attest it was a state of the art treatment.


#17

www.google.com/amp/s/www.hopkinsmedicine.org/healthlibrary/amp/conditions/physical_medicine_and_rehabilitation/complications_of_hyperbaric_oxygen_treatment_134,148


#18

@turnitaround: PROCEED AT YOUR OWN RISK. Consider the impacts to your credit rating and insurance costs by joining such an FB Group!!

https://www.facebook.com/groups/263031504029845/
facebook support group for MAV


#19

Hi I am interested in the oxygen therapy. Do you feel that it is helping for you?


#20

Hey darling, yes, I ve done 10 sessions so far. I do notice the difference. I feel less vertigo, I can work more on my PC. I am still recoverying, but lifr is getting better. I would recommend doing it.