Forum


donatenew

Welcome, Guest
Username: Password: Remember me

TOPIC: jaw dystonia

jaw dystonia 1 year 4 months ago #4040

  • Supergran
  • Supergran's Avatar
  • OFFLINE
  • Platinum Boarder
  • Posts: 261
  • Thank you received: 15
  • Karma: 4
It started with random jaw joint problems and by that I mean I would have to rearrange my jaw to chew, talk and at the dentist. My tongue randomly froze while I was eating with the spasm not allowing food to move in or out my mouth or allow me to swallow. I had random earache for which there was no medical infection etc...

3 weeks ago I thought I had an ear infection but it passed then I had pain in my teeth moving from tooth to tooth. Then I had face ache bit like neuralgia. Then my jaw started to lock closed. then one morning I woke up and had a lump in front of my ear so I went to the doctor because to me it looked like mumps! Ear infection along with a stone in the saliva gland was diagnosed. Two lots of anti biotics later and life became difficult to bear with the level of pain.

Twice in the one night I contacted the on call emergency Doctor. The first one said I have no idea what it is, it could be your dystonia and left. A few hours later and I now felt like my body was going into shock with the level of pain....shivery, clammy, headache. too hot, too cold, nauseous and considered that this may be it and I may actually die! the second GP did his best to get me admitted to hospital for my own safety but the hospital ENT Consultant was having none of it and told the GP to up the opiates.

Today I went to see my own GP who examined me and said the muscles in my face and around my jaw are so tight with spasm that it was dangerous. The plan of attack is to up the meds for s[asms and try to get some movement into my jaw and use extra strong painkillers to manage the situation back into some kind of control.

I am exhausted, weepy and in so much pain but my jaw has some movement back which is good. I havent eaten for 3 weeks as its too sore and am now scared of eating incase it puts me back the way so my diet is milk, custard pots and yoghurt. My mouth has broken out with absesses due to the lack of nutrition. In short this is a mess and I am feeling sorry for myself big time

It would be good to hear of other peoples experiences

Christine x
The administrator has disabled public write access.

jaw dystonia 1 year 3 months ago #4046

  • Anke
  • Anke's Avatar
  • OFFLINE
  • Gold Boarder
  • Posts: 81
  • Thank you received: 10
  • Karma: 1
So sorry Christine - I hope that since you posted this there has been some improvement and relief. I myself have had jaw stiffness but never to such an extent, and I really feel for you. I have heard that botox can help jaw dystonia, has this been considered? Also, at one point I was prescribed Dantrolene, which is a muscle relaxant that works on the muscles directly (rather than the brain), and this made an amazing difference for some strong spasms. In my case not a longterm solution as I tend to get strong side-effects with almost any med, but it did give some respite for awhile. Wishing you all the best.
The administrator has disabled public write access.

jaw dystonia 1 year 3 months ago #4053

  • Supergran
  • Supergran's Avatar
  • OFFLINE
  • Platinum Boarder
  • Posts: 261
  • Thank you received: 15
  • Karma: 4
I have the same problem with side effects and they tend to be potentially fatal so I am taken off the drug quickly then I have to go through the detox thing. I have a gum sheild thing the dentist made for me there ia a video worth looking at on utube about this topic were clear work/research over more than 10 years has been done and the difference in this mans face is amazing.

Am pretty well managed by non chemical methods but when it blows it really blows and I end up in an ambulance for an IV injection of procyclidine to release my lungs and throat spasms that stop me from breathing. However recently it would appear that there is a street drug which is giving a dystonic reaction and drug users are ending up in the a&e department. I believe the treatment for them is the antidote to the street drug of choice, so if hospital is needed there is now a need apparently to run the ...what street drug have you taken gauntlet and am soooo not coping with this as my dystonia was started as a result of being assaulted by a drug user!

I have a home care plan for emergencys and a few days ago with the jaw problem being added to my list of spasm areas it made things a bit complicated. In short I have asthma...peak flow dropped to 120, usually 450, pain which indicated dystonia in my lungs well kicking in and a head cold. I just wanted to cope at home but needed a bit of support but when I phoned nhs24 to speak to a Doctor for a bit of advice...normally they would give me a 2 hour care plan which I would do and agree if things didnt improve I would make the call and go to hospital feeling and knowing that at least I tried!

I got some jobs worth who insisted that I wasnt getting to speak to a Doctor and she ordered an ambulance! I waited 20 mins or so and phoned 999 to cancel the ambulance. They decided that they wanted to assess me themselves and and the ambulkance arrived in mins. In short I had a melt down with nhs24 then another more polite melt down with the 999 call person then the paramedics arrived and I acted like a petulant child, giving it....why are you here I cancelled the ambulance...theres no point in agreeing to go in your ambulance its too dangerous, you dont do airway management. I stop breathing through the spasms and you guys just sit there watching me like am better than the training video you were made to sit through,...you dont do pain management and the pain of these spasms is worse than child birth without pain management.....OMG did I let them have it while my breathing was getting more and more difficult!

I also told him when we get in there some plank in a halloween doctor costume will go through the what street drugs do you take and I dont even have the puff to argue my case!

They bribed me with gas and air to get in the ambulance....I had messed about so long that by the time I got there when I was being transferred onto a trolley in resus I took a massive seizure type thing with flashing lights and vicious shakes....then I had to go through the street drug routine! Then I got the treatment. When it was done the paramedic came back to see me took my hand and said ...personally am sooo glad we got you to come into hospital tonight you really needed to be here.

Am so fed up with medical staff and the assumptions that dystonia patients are all now drug users and behave accordingly towards us. But am here survived another nasty one and now trying to be grateful for the lack of education and understanding from medical staff. I have a care plan available to them and they still just go straight for the street drug conversation.

Sorry for the rant! Having one of those days!

Christine x
The administrator has disabled public write access.

jaw dystonia 1 year 3 months ago #4055

  • Tim G
  • Tim G's Avatar
  • OFFLINE
  • Silver Boarder
  • Posts: 26
  • Thank you received: 1
  • Karma: 0
Hello I have had mandibular dystonia for about 5 yrs now and have not responded to either medications or botox in various facial muscles . Mine does not lock but just tightens making speech and eating tiring and hard. However the good new is I have just started a medication which has give some relief- tetrabenazine. The specialist recommended 75 mg/ day, but this made me very lethargic and could not drive safely. I found 50 mg still has a good effect but no tiredness. You have to build up to this dose increasing half tablet every 3 days. I did try this 3 yrs ago but with no effect at all./ I supect I either misread the dosage , or was give the 12.5 mg tablet instead of the 25 mg tablet. This drug is I understand prescsribed more for Huntingdons chorea but at a much higher dose. Hope you get some relief and mention thus to your doctor
The administrator has disabled public write access.

jaw dystonia 1 year 3 months ago #4061

  • Supergran
  • Supergran's Avatar
  • OFFLINE
  • Platinum Boarder
  • Posts: 261
  • Thank you received: 15
  • Karma: 4
Update on the jaw splint!.....it is working, up to a point but am having to change my diet to nothing chewy...essentially I try not to use my jaw joints too much and I use the jaw splint for around 20-30mins after I have eaten solid food. I have evenings were my jaw is really painful and I have worn it through the night. It feels a bit wierd in that the muscles in my jaw joint keep spasming against the splint. I did have the same thing with ankle and wrist splints and a soft neck brace but I find that if I relax and just let it go eventually the muscles calm down and the jaw returns to the posture it should be in.

Its not a wonder/magic fix! its a management tool along with my many other management toys but am a lot more comfortable and am picking up my confidence with trying different foods again. My food trials are very small but the taste is wonderful and beats living on ensure drinks!

The splint cost £31 and was made by my own dentist. I have been referred to the dental hospital for a full assessment and will keep you posted.

All the best

Christine xx
The administrator has disabled public write access.
Time to create page: 0.111 seconds