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Rocking


#21

Verapamil. I titrated up from 20mg to 360mg over the course of 2-3 months. Maximum improvement came at the 360mg dose.


#22

Propranolol stopped the 24/7 dizzy sensation after 8-9 months. It only happens sometimes now but all the time but I think alot of people might need quite high doses. Maximum recommended for migraine prevention is 160mg daily and I think alot of people may well need that. I’ve heard about people who only took 10 or 20mg and were ‘better’ but suspect most need the recommended dosage which is 80 to160mg.


#23

I think I am one of the ones that need high dose. I am increasing Effexor to 150 mg tomorrow.

And as I mentioned to @Veenaj84, I am kinda forcing myself to do the things that make me most uncomfortable, such as sitting still with no support, going to meetings, going to supermarkets. I know its crazy, but I think the system needs to re-adapt. I am also doing vision therapy, and sometimes when my eyes are wondering due to the rocking, it helps me with fixating my gaze and I think the rocking sort of slows down. I am also taking CBD oil for pain management, instead of ibuprofen.

Last thing is that I am using my mouth guard, and my pain in the jaw and ear has also diminished A LOT, and that has stopped the mini half spins I was having.

Read the paper about rocking I posted the other day (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5638651/) (The work of this researcher is funded by the MDDS and I like that because their papers are free access). It is not recognized as a symptom of MAV, but authors suggests it should be, and also that there is a cycle that happens, rocking-headache-increased rocking, and throw anxiety in the middle, more rocking-headache. So if we can control anxiety and headache/pain, I think eventually the rocking slows down and goes away. I am hoping for that.

You all rock! :slight_smile:

Love for the weekend


#24

ok so we can say then that our symptoms include motion sensitivity and visual vertigo? I always say I just have the rocking, but maybe the rocking is the symptom of the other 2? I am starting to find all these very fascinating.
Another data point today that I am in good mood is that when I carry my baby I don’t feel anything. I thought it was because he is moving so it masks my brain rocking, but the other day I carried 20 bags and a box, and I didn’t feel the rocking either. My vestibular rehab suggested that I could wear a vest with weights, that people with ataxia(?) use. Anyway, just to keep documenting.

On another note, I am a public health researcher and I was wondering if we should try to collect all the info from this site and write a report or something (@turnitaround). Maybe the MDDS foundation could give us some $ for publication. Some sort of teaching material for medical students and professionals. I have been mainly seen at a teaching hospital, and only my neurologist knew something about VM. Ok my optimist thought of the day.


#25

Looking on the bright side - to be excused work/team meetings! :joy:


#26

Sounds like a good idea - there is a gap of knowledge about VM at GP level so some information would be useful.


#27

That’s awesome, I think its important to do that. I did that so much though that I was getting really depressed. It takes a lot of will power to “carry on”, so be careful not to run completely out of steam… rest too (-:


#28

yeah, rest is important. With son going to bed at 8.30, we are usually in pijamas by then :slight_smile:


#29

Nice! Same here, although he’s been jumping into our bed like at 2:00AM…


#30

gosh… well, patience. Our son cant scape from his crib yet.


#31

my rocking has been reduced a lot from tiny dose topamax and 4 beads effexor. Am I perfect? nope… but much better than before. I was so bad like drunk, felt like i was swaying standing still, objects moved when i was sitting still and i felt i was on a rocking cruise ship. It was impossible to run and very difficult to walk. I am now running again on these two meds. Get on the right meds then push your self to move outside


#32

It’s all extremely fascinating. I developed the interest first once I started Tai Chi, lost it mostly when really acute, found much comprehension difficult until the brain fog lifted and been fascinated ever since. I’ve always found the visual vertigo just makes the rocking much worse as does the motion sensitivity, particularly the self motion turning your head so basically they are triggers I suppose. Thinking through the order in which the meds controlled my own symptoms I wouldn’t imagine the rocking would stop until after the visual vertigo has ceased or at least really reduced and that wouldn’t happen until the meds raise the drug tolerance threshold for triggers.

You are getting results from the Effexor presumably. Probably you haven’t been on enough for long enough to get really good control yet and you are still rocking, still experiencing motion sensitivity and visual vertigo. What has the Effexor sorted so far. Have your migraines stopped/reduced in intensity maybe. Are you exposing your MAV to too many triggers too soon. I find with my balance, even though it’s now steady virtually consistently and I now have my dynamic balance back (I no longer end up bent double when cooking the evening meal, however tired - fingers crossed here - I can now just very recently - continue to remain steady and upright), anything out of ordinary triggers. Particularly any formal exercises or maybe Tai Chi. I bounce back quicker so the baseline has come up. But it will still trigger.

The carrying weights phenomena. The Ultimate Distraction maybe. Mustn’t drop baby or the parcels. Alternatively your brain has habituated to you walking your normal way and feel dizzy. It thinks that OK. Carrying weight you walk slightly differently. It’s certainly all very fascinating. Helen


#33

That’s how I feel , the more I do things that make me feel so bad I worry that I’m not improving at all :frowning:


#34

I’m so happy to hear this @123isall I know how bad you felt before so this gives me hope ! Can I ask have these too drugs helped the spaced out feeling ? I’m really going to ask dr s about this


#35

hey, i think effexor has helped in multiple areas, pain, headaches, anxiety, depression, and then maybe some rocking? i might be exposing myself to many things, but both mm vr therapist and neurolgist told me to do it.
I have a lot of down time too. So i think ir is balanced.


#36

Yes Amy they have helped the derealisation as well. I just tried increasing the topamax last night as i want to really hit this mav in the head. Well that has made the exhaustion hit hard today. Ask your doc about topamax. It is a rough one to get on and increasing dose is bloody rough but once you’re use to it it’s quite effective.


#37

Thanks so much @123isall I’m seeing him next Friday so will ask and see what he suggests :slight_smile: thanks for all your help