Vestibular Migraine Advice

[Jpsurf760]

Has anyone been able to recover from chronic vestibular migraine on here? I've been off balance for a whole year now.

What has helped you?

[Pilgrim204]

Hi

I’ve been in similar position to you for over ten years, and thinking back, probably most of my life.

It was only in January that I was finally diagnosed with vestibular migraine after years of treatment for numerous other suspected conditions.

I was given Flunarizine which was very effective, after around six weeks, but it made every muscle in my body ache so had to stop.

For the past 8 weeks I’ve been on combination of Sertraline and Propanolol which are now starting to really improve things weeks by week.

Best of luck in finding what works for you.

Cheers

Michael

[Codpuss]

I've spent over 2 years constantly severely dizzy. Spent every day in bed, i couldn't do anything. Felt like giving up hope after so many things didn't work. I have been on flunarizine for 3 months and am feeling significantly better although i still have quite a way to go to feel well again. Flunarizine is only available from America so you can't get it from your gp. Has to be a headache specialist.

[Bea66]

I think Propranolol has helped but it does take a period of adjustment, it's been one of the few drugs I've felt has been worth the "push through" stage for me. I also take Stematil/Bucastem/Prochiorperazine for dizziness and nausea, I find the buccal tablets, the ones you place between your lip and gum, better for faster relief.

[Gaia219]

I would not say I have “ recovered” but my symptoms have vastly improved. I’ve had vestibular migraines for over 30 years. Until two years ago attacks were infrequent (usually seasonal as allergies are a big trigger). Then suddenly two years ago they became chronic. I don’t think I’ve had a single day where I’m not at least a little bit dizzy. At one point I had to take medical leave from my job for two months because I could barely walk and certainly could not drive. Most medications I tried made me feel worse- those of us with this type of migraine tend to be extremely med sensitive- so I had to find non pharmaceutical methods to manage my symptoms. Here’s what worked for me:

Vestibular rehabilitation therapy greatly reduced the actual vertigo ( room spinning etc).

Craniosacral therapy- it’s a type of extremely gentle chiropractic that actually adjusts the cranial bones. This helped my TMJ and reduced the pressure on the vestibular system

Following a Migraine Diet helps a lot! I figured out my trigger foods - there are a lot of them- and eliminated them from my diet. No soy sauce, garlic, yeasty breads, fermented foods, processed foods, etc.

The Cefaly Device. It’s a TENS device that adheres to your forehead and stimulates the transgeminal nerve. Used several times a week reduced frequency and severity of my attacks.

Heart Math biofeedback device is a very easy to use device that works on an app on your phone. It helps keep my overall system calmer, less tense and less prone to attacks.

Neurofeedback has also helped a lot. It’s hard to find people who do it- I have to travel over an hour one way for treatment but it’s worth it!

I have to keep to a regular sleep schedule and drink lots of water every day.

I avoid environmental triggers as much as possible- noisy environments like shopping malls and things like paint fumes, strong perfume etc

I take 2 mg of Valium when all the above doesn’t work and I still have an attack of the dizzies it calms down the vestibular system enough that I can still function.

I recently started taking a very low dose ( 10 mg) of propranolol daily to help keep general anxiety under control. I do get anxious when I’m in situations where I might experience an attack, and anxiety just makes the dizziness worse. So far it’s been helping and I’m not experiencing side effects.

Hope this helps!

[Jpsurf760 in reply to Gaia219]

WOW THANKS so much for your very detailed reply. So did the vestibular rehab actually help with the spinning feeling that happens when you're not even moving? That's when it's worse for me

[Gaia219 in reply to Jpsurf760]

Yes it did. I used to get this weird sensation that I was standing on a moving sidewalk when I was standing still. Or when I was walking it felt like I was standing still and the scenery around me was moving like a movie projected onto a backdrop. A few times I would have bet a months pay that we had just experienced an earthquake- even visually everything moved. Therapy virtually eliminated all that. It did not help the “ internal disequilibrium “. That kinda drunk dizzy my arms and legs feel like rubber feeling. All the other therapies have helped with that.

[Jpsurf760 in reply to Gaia219]

That's great to hear! Can I ask what types of rehab exercises you did? (I know I'm asking a lot, sorry haha) Or do you have a link to an online resource you used??

Thank you so much for the help

[Gaia219 in reply to Jpsurf760]

No problem! I know I was terrified when all this flared up and was pretty desperate for information

You need to work with a physical therapist who is specially trained in vestibular rehabilitation therapy. A lot of it involves retraining other parts of your body to sense whether you are moving since the info coming through your eyes gets scrambled. For example, standing on a mini trampoline with your arms folded across your chest while turning your head side to side. You learn to use your legs, feet and hips in a different way to discern and maintain balance. I also learned how to move my body and especially my head differently to avoid too much visual confusion. If you’ve ever gotten dizzy in a grocery store you know what happens when your brain can’t keep up with the visual input from turning your head side to side to look for items on the shelves. A lot of this stuff then becomes automatic. Now when I’m in a car, I know I can’t just “ hop out” after the drive. I have to look forward for a second and focus on something in the middle distance to make sure my brain understands we are no longer moving. Then I have to keep my upper body as straight as possible and keep my eyes focused on something straight ahead. It gets easier with practice

[Jpsurf760 in reply to Gaia219]

Thank you so much! I'm going to make sure I start doing vrt daily. I've done it before, but not consistently

[Gaia219 in reply to Jpsurf760]

Good luck!

[T1m0thy]

I had constant dizziness and headaches for 6 months and was prescribed propranolol. Started on 40mg a day which didn't help, upped to 80mg slow release and after a few weeks my constant dizziness and headaches went away completely! Unfortunately I have a slow heart rate and the propranolol slowed it even further so they had to take me off it. Headaches and dizziness returned after a few days, but so far they don't seem as bad as before I started taking propranolol.

I've now been prescribed amitriptyline but I'm nervous about the side effects so haven't started taking it. I'm currently looking into alternative treatments. I have a massage for migraines tomorrow which I don't think will do anything but willing to give it a go if it means I don't have to take pills for the rest of my life!

Good luck finding something that works for you.

[Jpsurf760 in reply to T1m0thy]

Hey Tim! I've been on amitriptyline for about 5 months and I can say that I've had a good experience with it. I've had really bad side effects from meds in the past, so i was afraid to start it. So far the only side effect is drowsiness, which actually helps me sleep better. Of course, everyone reacts to medicine differently! So I don't want to give false hope, but personally it has helped me function again. I still am dizzy like all the time, but it's not as bad with the amitriptyline now.

[VictorDot in reply to T1m0thy]

Hi Timothy, I am starting propranolol for the same reason. I've been constantly dizzy for the last 2 years. Sorry to hear about your side effects. If you don't mind sharing, how long did you stay on propranolol before you had to get off? I'm wondering how long it took for it to work for you.

[T1m0thy in reply to VictorDot]

I was on it for 3 - 4 months I think. It started working in a couple of weeks.

I have actually been migraine free now for the last 6 months without medication. I found that my trigger is my eyesight. I have a very slight stigmatism in one of my eyes, barely bad enough for glasses. I did get some glasses when my migraines first started, to wear at the computer, however they didn't seem to help. Then I started wearing them all the time and I haven't had a migraine or dizziness since!