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Update


#1

Hi all,
I hope everyone is doing ok today. I want to give an update on how I am doing.
I started effexor 75 mg on may 5th (pretty quick titration, five days only due to major anxiety), and i did not have any side effects. This was after being on zoloft 25 mg for 5 weeks and feeling mega anxious and no relief on symptoms.
I think the main help from effexor has been my anxiety. After that, my rocking in the morning is almost on the background (it then starts around mid day). I am also only taking 400 magnesium glycinate at night. Some nights i sleep ok (not great, i think since starting zoloft my sleep is very interrupted), but sometimes i wake up a couple of times at night.
In the midst, i was also diagnoses with vertical heterophoria and given prism glasses but could not wear them more than two weeks, I could not walk comfortably, although I still think I need to do something with my eyes, sometimes i feel great and sometimes I cant focus. I have not given up on the prisms but kept wondering if I should first take care of the MAV. Why am I sure this is MAV and not my eyes? Because symptoms coincided with the return of my period after pregnancy.
Anyway, so that is about 9 weeks on effexor, if I have a good night sleep I can feel 75% better. If i have a crappy sleep, i feel at 40%.

Ok so question for you dear all, how long more to see if effexor is going to help to get to 90% lets say? I have been travelling so back home tomorrow anf will start the migraine diet next week.
i wont stop effexor soon because of my anxiety, but want to see if it will help at this dose more with MAV?
My main symtoms are rocking, headaches/ migraine headache, some tinnitus and sometimes ear pain, and head pressure.
I have used rizatriptan and advil a couple of times in the last month also when got bad migraine headache.

ok, thanks for reading

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#2

Hello all,

Another update. My vestibular rehab person discharged me today. She said my balance and all is good, I walk well and don´t fall, etc. She said there is no much more she can do with the rocking, that I just need to keep doing the exercises she has given me. I guess this is good news, at least is one less appointment I have to go to. She was a very nice person and helped me figure out my stuff with my eyes.

An one extra piece, I have always had jaw pain problems, so I need to wear a night guard, seems that a lot of my ear pain is actually coming from my jaw. I just need to wait because there are no appointments soon.

I feel I need another head… neck, jaw, eyes, ear and brain problems.

I have a big heart though, and great sense of humor, hehe.


#3

Well well, an honest PT that’s not going to try to wring you dry … that seems like sensible advice … once you get to a certain point I reckon these are things you can practice yourself without supervision unless things really change.

I had TMJ badly for a while, brought on by the relaxation exercises the psychotherapist gave me(!) which included clenching my jaw. I actually found personally that wearing the expensive mouth guard made things worse. It got better without it but it took time. It’s taken 2 years for it to improve, but my TMJ is nearly gone now. I can finally eat steak again! Whoop! My main advice would be to eat only soft foods when it’s bad and rest your jaw as much as possible between meals, don’t fiddle with it - a lot of things go wrong in the body when they get ‘para-functional’ use.


#4

yeah, I have always been able to rest it, but the pain is now really bad, both in the jaw and the ear. I cracked it the other day while sleeping. Will see how the mouth guard works. Glad it is better for you!


#5

that ‘cracking’ could be fluid from your ear, dried in the eustachian tube, then cracking free btw … i have had that fluid for 3.5 years and it occasionally dries and cracks open … not all is what it seems sometimes … so basically if that’s your TMJ it could actually be an ear thing again …

(PS I have no evidence for this except the cracking is also accompanied by some squishy sensations if I move my jaw and/or massage the back left of my neck (where the eustachian tube travels down to the throat) and I get fluid bubbling in my ear some mornings)


#6

could be… my right ear has given me some trouble the last months, and my head feels heavier on that side, if that even makes sense.

time and patience is all, as you say.


#7

I am on a microdose of 21mg and i titrated over 6 months.I am very med sensitive. I see incremental benefits every month.I know of two mvertigo users who are 100% on effexor and take only 37.5 and took them close to an year. Effexor has allowed me to hit the gym often and the exercise helps tons. I do the exercise within reason and avoid ones that make me worse.


#8

I wear a night guard before sleep and a seat belt before i drive. I started grinding only post MAV and now it has become a regular practise for me to wear night guard before i sleep. It does help with the Jaw pain.


#9

thanks @GetBetter My neurologist told me it would take a year to get better. I am three months exactly today. I will get the guard because pain is horrible. I should have used this way before MAV.


#10

@dizzy3 @turnitaround my jaw hurts and my teeth throb - I wondered if it was more than coincidence. My dentist has been trying to get me to wear a mouthguard for years, but I know I wouldn’t wear it. When I am anxious I clench my jaw - don’t even know I am doing it.


#11

Don’t think ‘teeth throbbing’ is a TMJ symptom (nor an ear symptom). Definitely a dental issue. Perhaps you are grinding and not letting your gums rest, or you have an infection or compacting of teeth? I’d leave it up to the expert to work out.

However, I will say this: a lot of dentistry is a racket. Even today … with all our technology … sometimes it takes a lot for me to trust these guys who routinely charge so much for their ‘expertise’.

Cynical of me perhaps but after having experienced what I have with MAV and TMJ it’s hard not to feel some of the medical and dental community are either ‘on the make’ or taking convenient advantage …

btw, I’m convinced TMJ is a neurological/muscle/joint issue, but not in the way people think. It’s not entirely about damage, it’s about change. I think what happens is if you have a muscle spasm that leads to injury of the muscle or surrounding fibres, the whole alignment characteristics of your jaw and everything your brain learnt over years to move your jaw suddenly changes. It takes months for the muscle and fibres to recover, probably, but years for your brain to relearn all the same manipulation it once knew.

I had terrible TMJ, but it’s almost completely recovered with almost zero input from a dentist (except one visit when he gave me a list of useful tips). I wasted £300 on a guard that was completely unnecessary and all that was necessary was to follow the advice of the dentist:

  • to eliminate ‘parafunctional’ use of the jaw (use it only for what it is intended)
  • eliminate biting and biting of nails
  • achieve this in part by chopping up food into little pieces before consumption
  • eat liquidised food if things are bad
  • never allow your jaw to ‘click’

and over time the brain works it all out again and the jaw gains strength.


#12

Teeth throbbing is a TMJD symptom, particularly given the habit to clench (bruxism).

TMJD is hereditary, not always injury based. I passed it to my son whose issues started about the same time as mine did at around age 14. For us, it’s not decompensation from some event, it’s genetic predisposition and structural alignment issues based on our biology.

I have fairly severe TMJD with a missing disk and significantly remodeled bones that are unmistakable on both MRI and x-ray. Before the bones wore away the constant popping caused hairline fractures throughout my skull on the left side radiating up from the point of contact with the jaw. Short of living on a liquid diet for the last 30 years, there was no stopping the progression.


#13

Who knows, but it’s all a racket and you have to realise they’ll twist things to make themselves more $ … and industry ‘norms’ and 'dogma’s are often geared towards this …

Ubiquitous use of a ‘guard’ is a very convenient thing for dentistry …

As is probably the frequency they recommend you see them …


#14

I’ve never been able to afford to treat mine, so yeah, it’s a racket.


#15

Sold another mouth guard, dentist like:


#16

@flutters
sorry - I had missed the replies on this thread - I sometimes use an ipad and sometimes don’t notice thread updates. I might have TMJ - my jaw sometime locks when I yawn and don’t get me started on dentists! Over the years I have spent a fortune on getting my teeth fixed and working - I guess I shouldn’t complain but I do get cross that it is so expensive when having good teeth is crucial to good health!
@dizzy3 good to hear that your balance is good - as your PT said keep ding the exercises :smile:
Good too that you have a sense of humour -it definitely helps to see us through all this stuff. :rofl: