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    Old 07-11-2004, 07:36 PM   #1
    Carey
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    Has anyone passed out from such severe TMJ pain?

    Hi everyone,

    I havent posted for a while, my tmj nightmare is still continuing. For those who don't know my story here's a brief summary. my Tmj problems resulted from being intubated (tube put down the throat) for a general anaesthesc. the surgery i had was not related to my teeth, mouth or jaw what so ever.

    this happened 5 years ago when I was 19. I tried all conservative treatments from 3 splints, massage, chiropractic, physio, acupuncture, you name it everything but to no avail. in fact i think it made my jaw worse. I had an arthrocentesis' performed 3 years ago which pushed my disc forward even more. At that stage my jaw was locked and i could only open 5mm. I lived with this permanent locking for 4 years. I was sent to a tmj surgeon and he straight away said that he would remove my disc. i was not happy with his decision as i thought it was a bit too drastic, with me being so young and the thought of bone on bone would lead to degeneration of the joint etc.

    I wanted a second opinion ( in total i saw 7 surgeons) and my pain specialist finally found a surgeon with the skill and talent who would operate, and he was my last resource before going interstate. for some reason all the other surgeons did not want to touch me, for what reason I don't know.

    Anyway to cut a long story short, my surgeon performed an arthroscope and found that my tmj disc was damaged beyond repair. the treatment was going to be to repair the disc but this was not possible and for the quality of my life i decided that a discectomy was the go.
    So i had my disc removed, it was painful but i expected that.

    To date, the surgery did improve my opening to double to what it was pre surgery and i am now at 10mm. that is the widest i can open and my pain is still the same very severe, i am on and have been for the past4 years loads of medications that sedate me so much that i am in bed at 7:30pm every night, but it does help with the pain.

    But over the past year my pain gets so severe, my tmj, facial,and neck pain as well as spasms and severe headache that I pass out and am unconsciouss for anywhere up to 1 and a half hours to 2 hours. In total I have collapsed and have been taken by ambulance to hospital on 8 occasions. but over the past 2 months it is happening more frequently (on 3 occasions). I have been given IV morphine for the pain when I come to which helps a great deal, but recently an ER doctor gave me an injection of ketorolac which is as potent as morphine but without all the side effects of morphine, and this helped with my severe pain. I'd rather take that than morphine and it has proven to be very effective for me.

    My last episode was only 3 days ago. I see my pain specialist this week to see if i can give this injection to myself before my pain gets to the stage of passing out.

    Has anyone else experienced this?

    Sorry, this short post has turned out to be a rather long one.

    Take care,
    Carey

     
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    Old 07-12-2004, 06:36 AM   #2
    delilah1963
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    Re: Has anyone passed out from such severe TMJ pain?

    (((Carey))),

    I am sorry I don't know anything about ketorolac. I read somewhere on the pain management board a guy whose wife received occipital nerve blocks (I had one and it helped with the headaches for a month or so), and robaxin infusions, which from what I remember are daily infusions of (possibly) increasing strength of robaxin, which in and of itself in pill form, doesn't do much, but apparently these infusions helped his wife.

    It's all I can offer. Your pain specialist should be able to help you have something strong enough nearby for the breakthrough pain that is so unbearable for you.

    Gentle ((((((((((hugs)))))))))))),
    Del.

     
    Old 07-12-2004, 11:44 AM   #3
    meditation
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    Re: Has anyone passed out from such severe TMJ pain?

    Having a history of severe TMJ pain, I can say that I, too, have passed out from it.

    I have never heard of the drug you are talking about? Hum? If it helps, that is good.

    My warning to those of you out there in this forum.

    When I was 17, my oral surgeon removed my discs because he felt they were unreparable. In place, he put in silastic implants, which were supposed to be temp. Well, almost immediately, I went bone on bone. I was awake when the surgeon removed them...and I heard him say, "Some of the implant is missing." A month after, my implants had been taken off the market.


    Problems? Well, any time I am in jaw pain, which now, because a stupid screw is 24/7, I burn up...it feels like I have a fever.

    I guess my warning may be more of a vent....Because, we all know how severe pain affects us. For me, it is getting to the point I can barely function. I credit the man upstairs with the little strength I have. I can barely walk, talk, eat...even keep my head up.

    So, after all of this, I guess the point is, our bodies can only handle so much....If you feel this symptom is hampering your daily life, whatever your issue with it is, you definitely need to bring it up with your doctor....
    Maybe there is something they can do...

    take care

    Last edited by meditation; 07-12-2004 at 11:44 AM.

     
    Old 07-12-2004, 04:04 PM   #4
    TiffanyAnn
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    Re: Has anyone passed out from such severe TMJ pain?

    Quote:
    Originally Posted by Carey
    Hi everyone,



    But over the past year my pain gets so severe, my tmj, facial,and neck pain as well as spasms and severe headache that I pass out and am unconsciouss for anywhere up to 1 and a half hours to 2 hours. In total I have collapsed and have been taken by ambulance to hospital on 8 occasions. but over the past 2 months it is happening more frequently (on 3 occasions). I have been given IV morphine for the pain when I come to which helps a great deal, but recently an ER doctor gave me an injection of ketorolac which is as potent as morphine but without all the side effects of morphine, and this helped with my severe pain. I'd rather take that than morphine and it has proven to be very effective for me.

    My last episode was only 3 days ago. I see my pain specialist this week to see if i can give this injection to myself before my pain gets to the stage of passing out.

    Has anyone else experienced this?

    Sorry, this short post has turned out to be a rather long one.

    Take care,
    Carey
    Hi Carey:
    You are extremely lucky that you have doctors who are willing to give you enough pain medication to keep you out of pain. Most will not give patients enough meds to keep them out of pain. At some point they seem to get fed up and cut off the pain meds. So, I say wow, you are so lucky your doctors are so generous with these very powerful pain killers. I was never that lucky.
    Hugs,
    Tiffany

     
    Old 07-12-2004, 05:46 PM   #5
    Michelle W
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    Re: Has anyone passed out from such severe TMJ pain?

    I can understand how you must be in so much pain. I totally believe it is possible to be in so much pain that you pass out. I also had surgery and ended up in more pain post surgery than prior to surgery. I had bilateral arthroplasty. The only thing I gained from surgery is that I can eat.

    I have been doing a lot of reading on the internet, and I read about these pain management infusion pumps that deliver only so much pain medication. You get a constant dose of pain medication. This way you don't get that over sedation that you get with typical pain medication. I wonder if anything like this would be an option for you? It is only something I read about, and thought it might be worth mentioning to you.

    I am on so much Neurontin that I am constantly tired, and it only takes the edge off my pain.

     
    Old 07-13-2004, 10:30 AM   #6
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    Re: Has anyone passed out from such severe TMJ pain?

    'But over the past year my pain gets so severe, my tmj, facial,and neck pain as well as spasms and severe headache that I pass out and am unconsciouss for anywhere up to 1 and a half hours to 2 hours.'

    Carey, I'm just so so sorry that this has happend to you. I really hope there is some way to help your jaw still, some veteran members do seem to find they can function well even without a disc (I'm thinking of Cymy Sue who I think is in this position now), I know very little about this but it would be worth travelling to find a good doctor who really knows what they are doing.

    I do absolutely feelfor you, I have passed out due to my TMJD, not exactly from pain but because my whole body seemed to begin 'limping' with such strong shuddering spasms it is as if they came from inside and numbed nerves so that I couldn't walk normally. This has only happeend when I've been extremely tired, pushing my body very hard (during a move, packing, carrying, not able to sleep enough at all, walking up five flights of stairs, going in a very bumpy rattling car, and so on...). At those times I couldn't be warm, shivered, muscles jumped involuntarily everywhere, and my head was so dizzy and vertigous I couldn't keep it straight or focus properly. Then terrible pain does start across the uper jaw, joints, and from temple to temple. I've learnt to not go without sleep if poss, not lift heavy things, go for long in any kind of bumpy car, go slowly in a car, not subject myself to vibration; i.e. loud music, drilling, whatever, not attempt any action involving repetitive arm use like cleaning (or about two months ago, prosaically enough - using a plunger in a blocked toilet! - this suddenly made me experience vertigo, neck and shoulder pain, loud tinnitus and near passing out) which puts huge strain on the scm muscles, not chew too hard. I'm lucky enough to be able to get by without pain killers if I do all this, but also my life is not really normal. On the other hand my problem is mostly muscular, I have normal opening, one normal disc and joint, the other disc slightly displaced. I cannot imagine how much worse you must feel. The joints are so close to the inner ear, unfair that a tmjd problem will become so very eggagerated in the whole body due to the influence and positioning this small area occupies.

    big and gentle hugs, Isobel

    Last edited by Isobelj; 07-13-2004 at 10:33 AM.

     
    Old 07-13-2004, 10:21 PM   #7
    Carey
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    Re: Has anyone passed out from such severe TMJ pain?

    Hi eveyone,

    Thanks for your replies. well I saw my doctor yesterday and he agreed with me in regards to giving this injection myself or a family member when my pain is so severe to hopefully prevent me from passing out. I went to the chemist where i got the ampoules and the rest of the kit so i am able to give myself this medication. i thought he would reject the idea but he knows what i have been thru and how often i have passed out, and he as well as myself are at witts ends in terms of finding adequate pain relief. so that was a good result for me, but hopefully i won't have to use the injection, and if i do i am relieved that i will have it on me and not have to wait hours in the ER before i get it.

    The worst thing that sets off my pain is talking, facial expressions, squinting and rolling over in my sleep onto my affected side. it is so hard and at my age i should be out socialising with my friends, but with being asleep at 7;30 each night that is not possible.

    Take care,
    Carey

     
    Old 07-19-2004, 07:48 PM   #8
    Lexusteel
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    Re: Has anyone passed out from such severe TMJ pain?

    <<Problems? Well, any time I am in jaw pain, which now, because a stupid screw is 24/7, I burn up...it feels like I have a fever.>>

    I get the same way when my pain is bad I feel like I have a fever too....I thought I was going crazy!!

    Thanks for making me feel a little more sane

    Raquel
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    Old 07-26-2004, 08:38 PM   #9
    Carey
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    Re: Has anyone passed out from such severe TMJ pain?

    Hi,

    My tmj pain seems to be getting worse, and the trigger is talking!!!!! I don't talk a lot but lately it has just been a nightmare. I had a really bad episode and thought I was going to pass out from the pain and I gave myself an injection which i usually have to go to the ER to get. it worked well and thank god i didn't pass out, or have to wait 4 hours to get it. i am so glad my pain dr approved this, it saves a lot of pain, time and money.

    Take care,
    Carey

     
    Old 07-27-2004, 01:48 AM   #10
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    Re: Has anyone passed out from such severe TMJ pain?

    My doctors have always said that if I didn't have to talk, this would get better a lot sooner but that I have to talk in my job. I told them it wouldn't matter, that I probably talk just as much during the summer as I do during the school year, I can't help it...lol. I haven't noticed a big difference anyway, so I must talk a lot period. Once they thought about this for a minute, they realized what they were saying and laughed and agreed. I learned how to talk with the hard splint in my mouth faster than anyone they had ever seen before, just because I couldn't stand not talking. I guess I could carry my laptop around all day and write what I needed to say? It WILL be interesting to see if this gets worse with the school year starting and me talking MORE though...I always lose my voice the first couple of days from overuse...what are my jaws going to do? Dana

    Last edited by beach_tiglet; 07-27-2004 at 01:49 AM.

     
    Old 09-08-2004, 05:33 PM   #11
    Carey
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    Re: Has anyone passed out from such severe TMJ pain?

    Hi everyone,

    Just a quick update. I have only passed out from severe pain once and that was 3 weeks ago. apart from that the ketorolac (Toradol) injection that i give myself have prevented me from collapsing, so that is a really big thing (good)for me. i am still on the mammoth amounts of medication, but i take each day as it comes.

    I hope you are all coping well.

    Take care,
    Carey

     
    Old 09-08-2004, 06:00 PM   #12
    Michelle W
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    Re: Has anyone passed out from such severe TMJ pain?

    Carey,

    I am trying to learn more about disectomys since I am having so much trouble with my TMJ since I had arthroplasty. I learned that my surgery did not last, and I now have bone on bone from a CAT scan. What did you gain from having the disectomy? I am assuming the only thing you gained is that your jaw is no longer locked. You didn't gain anything in regards to less pain did you? I am hoping maybe I can learn something from your situation.

    Best wishes,
    Michelle

     
    Old 09-12-2004, 10:24 PM   #13
    Carey
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    Re: Has anyone passed out from such severe TMJ pain?

    Hi Michelle,

    I had my Discectomy 14 months ago and I gained double my opening from pre op 5mm to 10mm post op and which i am still on currently. My disc removal was a result of having an arthroscope which revealed that my disc was damaged beyond repair, so for the quality of my life (I am only 23) I had exhausted every other conservative treatment and went for the discectomy. I have not gained that much opening because I now have bone on bone and i am pretty much in a locked state again because of this.

    In terms of pain, well I have to say it has gotten worse. the tmj, facial pain,neck, shoulder, back pain and headaches are more frequent and as you have probably read from my other posts, in the past year i have passed out from the pain on 10 occasions. I now have to inject myself with medication if i feel the pain is that bad to prevent me from passing out. I am still on the same meds, if not more than before, and i am asleep by 8pm every night because of their sedative nature.

    I know this sounds really aweful, but everyone reacts different to treatment. the key thing is to be and keep positive. i have had days when i wanted to pack it in but the loving support from my family and friends is something that i cannot put into words.

    My advice to you Michelle, is seek out all non surgical measures before surgery. however, if surgery is the path you wish to travel I cannot stress enough how important it is to find a good surgeon. I ended up seeing 7 all up until i found the right one. ask them questions if they don't answer them go elsewhere. you need to do your research which can take a while, but it is worth it in the end. I was lucky, my pain specialist knew what surgeons were good and bad and he was correct, but i didn't aggree with him alll the time. you have to trust your gut instincts as well.

    In terms of the surgery the first few days were tough. i had a PCA (patient controlled analgesia) of morphine for 6 days, physio had to be commenced approximately a week after surgery which was hard but for me to gain my opening i had to constantly do my exercises every day, and i still do them. but now i have bone on bone, my opening stops at 10mm.

    I am sorry this sounds so depressing, but this was my experience. and as i said, everyone is different.

    I hope i was helpful in a way. keep me posted to let me know what you decide and how you are progressing.

    Take care,
    Carey

     
    Old 09-13-2004, 11:12 AM   #14
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    Re: Has anyone passed out from such severe TMJ pain?

    Thank you for all the useful information. I am hoping that with time your body will somehow adjust to the surgery and your quality of life will improve. I will keep you posted and please continue to post your progress. I am very interested in hearing how things are going for you.

     
    Old 09-14-2004, 10:59 AM   #15
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    Re: Has anyone passed out from such severe TMJ pain?

    Attibert,

    I would ask for an MRI or CAT scan to see if your surgery is holding up as in the disc are still in place and your bones are not rubbing on bone.

    I had a similar surgery and I am just finding out that mine did not last more than a few months. I am in the process of working with Mayo Clinic to see what my options are at this time.

    best wishes,
    Michelle

     
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