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Worst trigger so far....


#41

Thanks Helen…im off work for 11 whole days soon…i will make sure “me” time is included in that.
Jo x


#42

I’m in the US and unfortunately this isn’t always the case. Unfortunately I think we all know from our experiences with doctors, too, that it really comes down to finding that one person who can help you.

I equate it to what I’ve observed in my work career. You can work for one of the “best companies” in the world, one of those that sound like paradise where they give the employees free lunches, free massages, have a free gym, but if YOUR DIRECT SUPERVISOR happens to be a jerk and he makes your life miserable, then all the free lunches in the world aren’t going to help and you might end up finding another company to work for because you are so miserable.

It’s the same here with doctors (and probably with VRT therapists). There are a lot of them here, but I’d venture a guess that the majority may not pick up on the subtle things (like the eye misalignment you mentioned) and I think a lot of it is luck to find the therapist or doctor who happens to pick up on something that others may have missed.

It’s so frustrating when we see so many big scientific achievements (going to the moon! Mars!) but no one seems to be able to figure out why we’re dizzy all the time.


#43

Agreed. You and me both. Financial resources get squandered on all the wrong things. Still you never know. One astronaut who went to moon from memory did have dizziness issues on return and that did result in some research some yrs ago, so just maybe …

Generalisations can be misleading. There certainly are jerks every where and people who don’t seem to give their all at work, lack enthusiasm etc and fail to do good job but from exp I must maintain my opinion that VRT in UK, aside maybe from a couple of specialist centres in the South East, is little used and little understood. To the point of being useless I’ve found. The NHS physio balance specialist I first saw had a bespoke suite of rooms, one A4 page of exercises and had been on a 1 or maybe 2 day course. After a very thorough examination she ticked 2 exercises for me to do for 1 month and told me if they didn’t work in two months, there was nothing further she could do to help me. When forced to see me again by a consultant’s letter one year later she told me I was still the same but now I was leaning to one side and needed to ‘stand up straight’, then discharged me saying there was nothing further she could do to help. As she was the only NHS one in the South West people were travelling 150 miles to see her. Poor souls. I’m not blaming her. It’s just insufficiently resourced. There are probably a few areas of excellence. Maybe it’s a pity the NHS don’t seem to have heard of ‘cascade’ training.

Going back to your point about nobody being able to figure out why we are dizzy at the time. Is the lack of research etc linked to the fact that alot of medics don’t acknowledge how much suffering/loss of earnings ‘dizziness’ actually causes? I suspect so.


#44

VRT has been some help to me for sure. It did make me more sick and I think that made my brain adjust so that I stopped getting motion sick from the movements after a couple months. It was cruel for sure, but I think it helped. Then again, I could have got better for other reasons. Hard to say.

I think I tended to overdo the exercises too, which is a common error. Body awareness is really key with those exercises I think. After my motion sickness was mostly gone, VRT was somewhat helpful to recalibrate my body, but because the migraine activity was still ongoing its like trying to hit a moving target. And so at that point I just lost interest in the exercises and instead do walking and tai chi and normal life movement, periodically closing my eyes to keep the vestibular system active.


#45

Oh, and I totally agree with the shoes thing. I put on my hiking boots and could barely walk up hills.


#46

Could be the hills causing it.


#47

You got it in one there I think. We are sometimes too keen to have recovered which is understandable but MAV requires time and patience. Too much, too soon on an unstable condition finished me completely at one time and it’s such a struggle once knocked right down to come back up again.

Interesting. I’ve even had to suspend Tai Chi and I was 3 yrs in before MAV went chronic. Hadn’t got back to it yet. Made me more unsteady than the VRT almost particularly TC Walking. You obviously haven’t found that.


#48

Yeah, tai chi walking is difficult for sure. I do more standing meditation and silk reeling first before tai chi walking.


#49

Thanks for that. Long ago worked out with TC walking it’s the moving the weight that does it. It’s so completely different from our normal walking pattern. Standing meditation and reeling in the silk - two other no goes for me still. Usually turning head L and R is difficult for MAVers. Was up to 17 minutes standing med. before chronic MAV but gone now. MAV has obviously not affected you so much as me. You are lucky. Still I hope to get back to it sometime soon’ish.


#50

well, it did affect me in the beginning for sure, but after about a year I was good enough to do some. At this point tai chi still doesn’t really feel awesome like it used to, but it doesn’t aggravate the symptoms anymore. I found that periodically trying a little bit here and there every week or so started to give me confidence that I could at least do some, even if it was just 5 min. Have you tried to keep your eyes open during standing meditation?


#51

Great. Well as long as it’s not aggravating the condition should be good and I did used to enjoy it. Yeah. Need to start off small - 5 minutes here and there - I’ve wondered how I used to do an 1 hour non-stop class-no problem and about 20-25 minutes a day at home for 3 years. I will return but it’s no good if it aggravates the MAV. Thanks for the eyes open tip but I always did anyway because I’m very visually dependent. I just fix on a distant point.


#52

Helen…we have very similar past history and MAV symotoms…can i ask how much activity you can handle on a daily basis and what % you feel at this time as i know like myself you are a chronic sufferer…do you have a set pattern or just do whatever you can depending how you feel?
Jo xx


#53

Generally now the 24/7 dizziness has settled I can usually do everything I want to do, unless I’m having an off day in which case I just do what I can depending. My main aim is not to push it too far and bring the 24/7’s back. If I do push it over the edge it won’t settle again to steady until I’ve had a night’s sleep. As I don’t work I have the choice. My husband’s always around and more than happy to fetch shopping, because it means he gets fed and even gets to choose what he gets fed. So I still avoid main triggers. I really, after so many years, want it to settle completely so don’t push it. I don’t run out of energy, rarely go to bed before 11.00 pm and walk out with him and the dog about 1.5 miles a day. In many ways I’ve resumed my normal pre-MAV routine as far as safety will permit. No step ladders, no Tai Chi and still not back to driving. I think much depends on habituation. What you have always done. As you work your routine will be very different and different level of activity but that is your habituation too. Reckon I’m mostly about 85%. I find MAV likes set patterns, routine best.

In the current heatwave however I’m finding heat really affects me. Read this may be the Propranolol’s fault. So I’ve been bit of a couch potato this week and will be til it’s cooler. The heat brings on the dizziness a bit whilst trying to do chores.


#54

Thanks for your reply Helen…i have been bedridden today…dizziness off the scale and felt like my nose and ears would burst…on my neurologisits instructions ive taken Zolmitriptan as an abortive…i feel a bit better now
Horrendous day its like the blood vessels in my nose are pulsating so bad it would split open!!!
Jo x


#55

Sorry to hear The Beast has put you in bed. That’s horrid. Bn there more times than I care to remember. Had head pressure so bad thought it would crack over and so bad you cannot bear to touch it on the pillow but not the nose. Well, I’ll say, not yet! Can imagine it though. Once the preventatives really have had time to kick in they should reduce frequency, duration and severity of acute attacks dramatically. Success is considered if it’s a 50% reduction. Some get more. Sometimes the attacks stop completely with the meds. Now that’s something to look forward to, eh. Hope you’ll be back on yr feet soon. This extremely hot weather we aren’t used to isn’t helping that’s for sure. I’ve a really woosy head, keeps swimming last couple of days. Whole thing’s enough to drive you crazy if you let it. Take good care of yourself. Keep well hydrated.


#56

Thanks Helen…im up and about today but still very off balance…seems more positional with certain head movements. So much for a nice week off work!!!:angry:
Hope your feeling a little better now the tempreture has dropped…its forecast hot again for the weekend though.
I dont know why my ears and sinus take the brunt of bad attacks…they feel like they will burst!! Is that blood vessels pumping do you think? Wonder if i would be better off on Beta Blockers!
Jo x


#57

Glad to hear you are vertical again if only just. I’ve got the really woosy, swimmy head today more so than yesterday though it’s 10 degrees cooler. Think a stuffy nose might be exacerbating things. Doesn’t take much. Bit of allergy, pollen, dunno. I get more back of head pressure, stiff neck, feeling loads of ants chasing around below my skin across top of shoulders at base of neck, and full swollen ears fit to burst. Always feels like either inflammation, too much matter in too small a space or restriction of something probably the blood vessels but no idea what it really is. Yes, blood pumping, could well be. Through too restricted an area.

Don’t know. Suspect you haven’t reached optimium dose of Nori for sufficient time yet for it to work fully. They can all take several months to be working fully. It’s tempting to wonder if, as our MAV seems so similar and they help me, whether the Propranolol would help you too. Don’t know if it works like that.

Postscript: forgot! Any idea of what triggered this episode? Of course it could just be the equivalent of a ‘week-end’ migraine. I’ve known plp hv migraines started late Friday and gone in time for them to go work on Monday. They say it’s because you’ve relaxed and of course you’ve on hols this week. Read plp get post stress migraines too. Cope with current stress then wham soon as it stops here comes an attack.


#58

Ok Guys/ Helen thanks for your reply. Im not coping with Nori AT ALL so rang headache nurse who spoke to my Neurologist. She saying its possible the Botox may be aggrevating my dizziness a little as its still early days after my 1st round (6 weeks) but thinks im unfortunately in the thick of an attack and wants me to cease the Nori as im ill with it even on a small dose and replace it with Buccastem and keep on with the Gabapentin and add Duloxetine in. So here i go again on another merry- go -round. I do feel a little better today though after taking an abortive for my nose and ear pressure/ pain…how they didnt burst was beyond me. Anyone have success on Duloxetine…:weary:
Jo x


#59

Duloxetine, that’s Cymbalta. You’ll find references on here for that. Quite a-lot. It’s a different anti-depressant class drug.

Confused here. Guess they mean to drop the Nori, and take Buccastem through this acute attack until you can start the Duloxetine. Buccastem is just used to control nausea, it’s not a migraine preventative. Very very good it is too. Had it by injection to stop vomiting. It could well have saved my life as I was dehydrating due to constant vomiting (sorry, probably too much information). However it’s only for short term use, a few days. So cannot see how it can replace the Nori. Short term it can be a godsend. Pity this full-on attack came when it did, before the Nori had a chance really. Set-backs are so frustrating.

Glad you could get hold of somebody and they could speak to the neurologist so quickly. Best thing to do. Reassuring the old NHS can pull out the stops so well at times.


#60

Yes Helen thats what i meant…drop the Nori and use Buccastem while im spinning THEN start the Duloxetine. Both times i trialled Nori i was in acute attacks…it never stood a chance really. I am useless…thats how i feel today…i think.a dose of antidepressants wouldnt go a miss!!! This sucks
Jo x