Anyone experimented with sleeping in an armchair, slanted bed or equivalent to reduce head pressure at night (and hopefully avoid vertigo?)
I’ve got to the point where vertigo only visits at night and wondered if this would help …
Was Ami keeping you sedated that you did not notice the night vertigo or did you have no night vertigo while on Ami?
You could try sleeping in a recliner and see if it helps. I see no harm in this experiment but a useful data point if it works.
Ami was keeping me sedated. Although vertigo intensity has definitely fluctuated. I suspect when the fistula is close to healing I get worse attacks as more pressure has built up. When I’m suffering more leakage the imbalance during the day is worse but this avoids a big bang attack later that night. Big bangs are not nausea inducing though but I’m sort of aware they create a bigger leak.
I may even try a ‘wedge’ mattress to see if that helps. I get the feeling that if I can avoid nighttime vertigo this thing could eventually go for good!
In the acute phase it is alright to baby the fistula. It is annoying one needs to baby it after so many months and years ! I thought you said your leaks stopped and no more draining sound.
There is some mystery central component which regulates pressure in the ears between perilymph and endolymph. It is this communication which gets fixed with the migraine meds and some folks recover rapidly. Yet another hypothesis !
Yeah something going on centrally too for sure. I get pressure in my good ear but no tinnitus.
Yes it’s VERY annoying.
I think the fistula heals to an extent but then starts hitting the pressure issue once perilymph returns close to its former volume. The last stretch is impeded by the slightly distended endolymph area. That pressure then breaches the window wound that was nearly healed and you get into a cycle. Hopefully a cyvle that can be ‘broken’ once the pressure goes down and at the same time the fistula wound gets stronger.
Yes the feeling of fluid nearly dropped to nil but I’m sure the vertigo reopens the wound. It’s settled around ‘not very much’ for a couple of weeks now.
I’m trying the diet now more strictly to see if that will also help. If you analyse the diet it’s mostly a Potassium restriction (chocolate, coffee, dairy ALL contain high levels of potassium). Presumably if you lower potassium intake that might influence the amount or endolymph produced and therefore lower the pressure.
If two pillows did not help, doubt if the wedge bed will help. Did you have a chance to try it ?
Ever since your fistula theory i have stopped doing yoga as it involves lot of forward bending. I used to do it on my good days once a week. I don’t feel worse by bending or going on haunches. Not sure if i need to be conservative or just live life and see what happens.
That’s a personal decision of course.
When this was at its worst I would get increased tinnitus (a sort of woosh) when bending over. That is rare now.
The biggest red flag was when going on haunches: I would get almost immediately noticeably dizzier for up to 24 hours. I was clearly increasing head pressure beyond what the wound would take.
That said maybe it’s OK for it to leak and release pressure? But intuitively it suggests it will have to reheal again. And I believe the longer it leaks the longer you have over pressure: the perilymph leak caused the hydrops in the first place.
As a precaution I’ve also stopped using headphones for the time being.
It’s a very personal decision.
Btw my plan was to use the pillows and the wedge. If vertigo continues I will try this.
Thanks James. I will try not to overdo but keep it within reason. I try to meditate lying down and have found without pillows I feel tilting to one side. With pillows it is not as pronounced. So keeping head elevated does help.
Topomax is also supposed to help with head pressure. I know you were looking at diamox for head pressure hence saying.
Yes and I believe there’s a relationship between these drugs? Also it’s interesting how propranolol often helps too. Head pressure is definitely a factor.
That’s interesting. I normally sleep lying flat to one side but it does worsen head pressure - I noticed a few months ago that on the odd occasion when I fell asleep on my back with my head elevated, I felt better.
Yeah. It’s hard to stay in that position though. It’s natural to toss and turn. Ho hum.
Yes, it is better than lying down, but the back hurts
When my last bad episode occurred, I could only find peaceful sleep on the couch in an almost upright position. If my head tilted back or to the side too much, the spinning sensation would start. In fact, the main reason I ever agreed to go on Nortriptyline was to get a good night’s sleep (I could deal with the off balance feeling during the day, but not spinning at night and getting no sleep). I think that finally being able to truly rest was what jump started my recovery. To this day, if I feel too much head pressure, or just a little off balance, I find that sleeping somewhat propped up on two or three pillows definitely helps.
1 Like
As a matter of interest, James - have you ever tried sleeping on your back?
Given that I believe we all have slightly different basic causes for this beastly vertigo - I definitely find sleeping on my back, even with just one pillow is optimal for me! We do, however have a brick under the top of the bed (one of the first ‘cures’ I was given back soon after this started, and never bothered to remove them). For my back problems, the raised bed is better than extra pillows…althouhg I do have to keep hitching myself up…I seem to slide down :-)…probably 'cos I’m bottom heavy!
1 Like
Haha.
Oh yes, sleeping on my back is my standard approach and works best 
I’m up to three pillows now (to create more gradual incline one is further down to stop neck being bent too much) on the suggestion of my wife and this is working well but she’s already complaining about only having one 
The brick idea is interesting!
Hope you are doing well, Beth!
1 Like
Sure you can spring for a new pillow for your wife, James - small price to pay for relief!!!
I’m doing pretty well, thanks! However, my computer has taken to playing silly buggars and particularly does;nt seem to like this forum!! It can take a loooong time to even scroll down when trying to read a post…very annoying!!! Too much computer is still not really good news, so I’m way behind. Need to catch it on a good (computer) day and post an up-date!
Although I’m not aroun here much, I think of you all often! Keep well and keep on trucking!
1 Like
Haha. We found some extra pillows I’m glad to report.
Keep on trucking Beth! (and treat yourself to a nice new laptop or get it refreshed. If I was closer I’d offer to pop over and fix it for you )
1 Like
Defragged the computer, so hoping it will behave for a while…
Does it work for ears too? 
Damn - would’nt it be great if fixing the ears was so simple!! Oops - just been rapped over the knuckles for only answering one person’s posts…
1 Like