I am also on Tramadol and it too is helping me get through my day. I started on 150mg daily and it worked so well for six weeks. I felt human again. Then I had to increase to 200mg and then to 300mg. I was too dopey on the 300mg and went back to 200mg but I was still having too much pain. My pain specialist suggested taking 150mg at 0800 and 1200 and this is working well. He also suggested the botox injections which I had relief of pain for 10 days. My next injections are Oct. 1 and he will inject more botox in the temple area (my main symptom is temporal headaches)and less in the jaw area. He was quite happy with what we started with. He likes to start with a small dose and go from there. He has been doing the botox injections for pain relief for eight years and his patients have had good results. I am hoping for the same for myself.

My consultant really hates the fact I'm taking it at all. Says I'm too young to be on it "for the rest of my life" but I'm so hopeful that they'll find something to fix me. I dont take it all the time, just when I really need to. Funnily enough I had the same problem with the 300mg - I swear I was high as a kite!!

I too hate taking pills but if it means the difference of having a decent day then I will take it. My pain is continuous from the moment I wake up to the moment I fall asleep. So I take my med every day and hopefully I will be able to wean off it this fall..What treatments are you doing right now? I go to chiro and massage weekly and the head neck and jaw clinic biweekly. I see my NM dentist tomorrow. I hope that some day I will be in a better place. How old are you and what do you do? I am fifty, female and a nurse at a children's hospital. I work part time (thank goodness).

Im 28 and a lawyer in a big Edinburgh firm. Thankfully work are very good about my situation and I can remote work form home if I need to. I've had TMJ pain since I was 18 and it's got worse over the years.
I used to go to physio every week in Livingston and get acupuncture on my face, neck and back, but I have to wait for a while before I can go back as I just had my jaw wash out and steriod injection on the left side. Will be getting the right side done shortly. I feel a little relief but not a great deal form it.
It really does get me down alot, although I'm so glad I found this forum as I now know I'm not alone!!

I had that done 4 years ago, didn't do a thing to be honest.

Everyone keeps telling me to stay positive about it but it's kind of hard when you know in yourself it's not done an awful lot.

Iv'e had pain since 1995 when i had my wisdom teeth out , the pain came & went but is there all the time now. The Botox has seemed to have worn off & I, m waiting to hear from the consultant at the pain clinic to see if I can have another go.

On Sept 23 I am going to see another specialist in TMJ to see what his opinion is. It seems that nothing else can be done. I have tried and done it all. If he says he can't help me then I will have another set of Botox injections done on Oct. 1. Cross your fingers for me!!!

Good luck.

Botox for relief is so new that you need to find out if the doctor should be dividing it into 12 insulin syringes to space it out along the masseters, 6 on a side. People with hypotrophied (schwarzneggered) jaw muscles (masseters) may need botox not only in the right spots, but more than once or twice! So keep asking where ever you find someone who has done it, "what was your protocol, that is, where did the injections actually go? How many? How often?".
Then remember that Botox is temporary relief, which may be worth it, but might damage the jaw muscles eventually. So, you have to keep searching the web to find out if any of the stress reduction or other treatments are useful. So far, the TMJ institute is recommending that you do NOT get flushes or surgery anymore, which makes sense if disordered chronic muscular activity is the problem (TMD). Ditto for mouth appliances that purport to treat the disorder - at best will protect teeth until you chomp through them.
Watch out for interrupted TMD. Almost any strong drugs or other shocks will interrupt TMD for days or sometimes even weeks, only for it to return. So, it's easy to think you are cured when it's only an interruption by, for example, your first opiates. Also, I get toradol injection when botoxed or nerve blocks, since I am so inflammed and sensitized that anything kicks off bad attacks. After botox I personally get worse for 3 days, then same misery as ever for 5 days, then temporary relief.

Today I saw my therapist at the Head Neck and Jaw clinic and he thinks I have a lot of neck component causing these headaches. ie. the joints are tight and now moving well in my neck. I am just so tired of all of this and not knowing what the hell is going on and the pain of the headaches. It's getting to be a bit much. I don't know what to do. I am at a lost once again. I guess we'll see what this new dentist in Montreal says and go from there. If no more treatments are available for me then I will do botox again in Oct. that will have been ten weeks since my last and first injections. He says he will put more in the temporal area as it is the headache that is the worst pain and less in my jaw area. I will ask him about the problems with the muscles wasting from long time use. I don't know what his maximum amount of injections that he would do is. I'll have to ask. Anyways thanks for letting me vent!!!!

we're all in the same boat.

don't give up. Instead, start taking charge of figuring out your diagnosis. Do nitely mouthbreathing awhile to see if TMD is your real problem. If so, usually the pain of your SCM muscles and head will be helped by doing enough botox to the jaw muscles (masseters) to make them so weak that your unconcious and/or nitetime chomping is ineffective. Be ready for possible baby food for up to 3 months, but you have not tested botox for TMD until you have done it enough to significantly weaken the jaw muscles. I would not spray botox around the temples until you have sufficiently tested for TMD by making the masseters weak.

Botox is NOT something to try here or there, whereever a sympathetic or radiating pain site is located. You want to use as little Botox as possible, and use it only for diagnosis plus short term (almost complete in the case of TMD) relief. Then, you have the health, energy and time to take your now proven diagnosis, and start treating it. If, once you have really noticeably weakened your masseter (jaw) muscles, you have NO relief, well, then you know that you can stop worrying about whether you have TMD -- it's something else. And, if you think it is jaw related, eat baby food for a few weeks and if no relief, look elsewhere.

In my TMD case, I am not sure I want to do botox forever, and doubt I can use stress relief after TMD of 15 years due to untreated pain and stress. I might decide to take out teeth, frankly. But, at least I know that I am the only one who made the diagnosis correctly, the only one to prove it, and, because treatment protocols are all still totally experimental, I know that I am the one who will cure it.

Good day all- I had my second round of botox injections in which I received 16 injections - 3 in either side of my jaw, 3 in either side of my head from my temple to my ear to about 1 1/2 inches above my ear, and 3 in my forehead (how that affects my jaw I have yet to figure out). The first round I had was during surgery in which they flushed my jaw joints and did botox right after. I was loopy that time and this time decided that I much prefer being loopy. The first time I noticed a huge difference in the amount of pain and the amount of times my jaw popped. The second time the injections burned and felt like fire being shot in my head. I have had constant headaches since then. I have had a splint for a long time and it's just not working anymore. I've asked my doctor about the use of a TENS unit on my jaw. I've used it on my back for a couple of years now to control the pain from 2 old compression fractures but I'm not sure if it would work for my jaw or not. Dyan- what other options do you know of?

TENS should not be used on the jaw...actually should not be used above the shoulders.

~Zig