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 IS THIS A TMJ HEADACHE? SUE, ELAINE, ANYONE?
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| Author | Topic: IS THIS A TMJ HEADACHE? SUE, ELAINE, ANYONE? | Page views: |
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thisstarr Veteran  Posts: 386 |
posted 03-10-2003 03:10 AM
  
Hi Everyone, Those of you that know me, know I have been suffering a longtime with tmj and have had to fight some battles, and cant get proper treatment. I had a different type of head pain I have never had from my TMJ before and was wondering if any of you have had this type of headache before? I always have a headache, pain behind my eyes, temples,forhead,back,top,and sides of head and it usually is on both sides, I sometimes get sharp shooting pains like lighting bolts that bring me to my knees in pain and I feel like I am going to die! But this headache I had the other night was different. I started to get this tingling feeling down my left side of my head and face and then it felt like something was crawling under my skin, like a spider (very werid & scary I really dont think it was a cluster headache at all, has this happen to anyone before? Take Care, IP: Logged |
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Cymy Sue Senior Veteran Posts: 698 |
posted 03-10-2003 06:03 AM
Hi Starr, I have had the types of pain and headaches you mentioned that you always have. I read recently the headache around the eye or "orbital area" which is now recognized as TMJD related can be very similiar or worse than a migraine. I don't remember having the tingling and crawly sensations until after I had surgery. I could have, it's been a long time. The tingling and crawling is usually nerve related. I think most people get these crawly sensations in different parts of the body, but we don't notice it as much as we do on our head or face. I recently had my right ring finger to go numb, tingle, have crawlies and other weird feelings. I could'nt decide if they had hit a nerve with the needle for an IV (it had never happened before) or if it was a little bit of carpal tunnel due to the "Mouse". It went away. I know you had a bad experience with the Doctor you seen. I think you should keep trying as others have suggested and find someone who will listen to you and talk to you about all of these symtoms. A Doctor or Dentist who understands TMJD will be able to explain why we have all of these "weird" sensations. I have gotten the best information and answers about my condition from my Dentist. Take Care, IP: Logged |
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Elaine Senior Veteran Posts: 1125 |
posted 03-10-2003 11:55 AM
Starr, I found a new primary care doctor and he actually listens to me, I was shocked!!! I asked him why migraine meds don't work when I get these headaches? I get the pain behind the eye, throw up for hours at a time, etc. He said, the headaches are worse than a migraine. I was under the impression that a migraine was the worst type of headache there was. I am now convinced we have a headache all of our own, that not to many recognize or even know about!!!! Hang in there, Elaine IP: Logged |
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Luigi12 Member  Posts: 41 |
posted 03-10-2003 06:28 PM
Hi Starr, Your pain sounds like my facial neuralgia...which is diagnosed as "atypical facial neuralgia". It is generally due to inflammation around the facial nerve and affects all the branches of the facial nerve. This could explain the "crawling" sensation in so many different areas of ytour face and head. It's most unpleasant, to put it lightly. And downright miserable to put it honestly. Most accepted neuro meds have no affect on this pain. I do take Dilantin but it doesn't stop it. Pain medication also does little--if anything--to help. About the only thing that my doctors do is prescribe an anti-anxiety like valium or Xanax when it get really bad. I hope they can find the cause if yours. And I hope this helps. IP: Logged |
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goodwillstacy Senior Member Posts: 177 |
posted 03-10-2003 08:21 PM
Hi Starr, I also, get the "crawling" feeling down my face..along with stabbing in the joint, pain behind the eye, and throbbing in the forehead. My arms also are sore, crap, I could go on.. hehe. I won't, but I just wanted you to know that I don't think the crawling feeling is abnormal. I did notice that on topamax (was on it for headaches) it did lessen a little. Like everyone else said, it is nerve related. hope you feel better, .stacy. IP: Logged |
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thisstarr Veteran Posts: 386 |
posted 03-11-2003 01:10 AM
Hi Everyone thanks for replying to me  SUE: Well it is good to know I am not the only one with all this head pain. The crawling sensation I had in my face really scared me. I havent had this type of pain before. I mostly have consent pain behind both of my eyes,the pain and pressure is so bad I want to rip my eyes out! The pain is always there, I just wish I new what I could do to ease the pain. sometimes I feel like I am going to go crazy I went to the doctor today hoping someone would listen to me. She told me there was nothing they can do for me, that I had to see a dentist to help me with my pain. Duh....I knew that already I was trying to explain I need to be on some type of pain mangment to help with my pain. I told her how this affect my everyday living, that I am in pain every second of everyday... I ask if I could be referred to a neroragist (sp) and she said I couldnt because there was nothing nerologicly wrong with me! ELAINE: Do you have a HMO or a ppo? The insurance I have now is a HMO and I really hate it. My husband said he can change it in July, so I am hoping then I can see any doctor I want and hopfully one that will listen. The Doctors at Kaiser (thats my insurance company) are really stupid, I think these are the doctors that couldnt get hire anywhere else so thery put them there! I am so happy you found a doctor to listen to you LUIGI: What kind of test do they run on you to know if you have this or not! I would really like to know what the heck is wrong with me, I have pain all over my face, but I just assume it was from my TMJ. Do you see a medical doctor for this or a dentist/specialest! Thanks for the good information, I appreciate it! STACY: Have you seen a doctor about this? And if you have what type of doctor is treating you for this? It seems like I am going to have to be the doctor and figure out what wrong with me because all the doctors I come across are stupid Idoits! I have had TMJ for over 6 years, I went 4 years trying to figure out why I have having all this pain ( bad headaches, clicking in jaw, pain behind the eyes, etc)..I could go on forever too...lol..I figure out I had TMJ on my own, and then saw a specialest that confirmed I had a bad case of it, but didnt help me at all, made me worse... so I went from doctor to doctor trying to get so help and couldnt find knowone to listen to me! I have gone a long time in pain and was taking OTC like candy to try to ease my pain. I finally got insurance so I can go to the doctor again, but I am in the same boat, I cant seem to find ANYONE to listen to me. If I ever recover from this horror I think I will go to medical school and become a dam TMJ doctor so I can help people! Because the doctor we have today, are not imformed about TMJ AT ALL and they really need to be aware of the affect it does to us and oue bodys. Take care everyone Starr [This message has been edited by thisstarr (edited 03-11-2003).] IP: Logged |
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thisstarr Veteran Posts: 386 |
posted 03-11-2003 01:13 AM
Hi Everyone thanks for replying to me SUE: Well it is good to know I am not the only one with all this head pain. The crawling sensation I had in my face really scared me. I havent had this type of pain before. I mostly have consent pain behind both of my eyes,the pain and pressure is so bad I want to rip my eyes out! The pain is always there, I just wish I new what I could do to ease the pain. sometimes I feel like I am going to go crazy I went to the doctor today hoping someone would listen to me. She told me there was nothing they can do for me, that I had to see a dentist to help me with my pain. Duh....I knew that already I was trying to explain I need to be on some type of pain mangment to help with my pain. I told her how this affect my everyday living, that I am in pain every second of everyday... I ask if I could be referred to a neroragist (sp) and she said I couldnt because there was nothing nerologicly wrong with me! ELAINE: Do you have a HMO or a ppo? The insurance I have now is a HMO and I really hate it. My husband said he can change it in July, so I am hoping then I can see any doctor I want and hopfully one that will listen. The Doctors at Kaiser (thats my insurance company) are really stupid, I think these are the doctors that couldnt get hire anywhere else so thery put them there! I am so happy you found a doctor to listen to you LUIGI: What kind of test do they run on you to know if you have this or not! I would really like to know what the heck is wrong with me, I have pain all over my face, but I just assume it was from my TMJ. Do you see a medical doctor for this or a dentist/specialest! Thanks for the good information, I appreciate it! STACY: Have you seen a doctor about this? And if you have what type of doctor is treating you for this? It seems like I am going to have to be the doctor and figure out what wrong with me because all the doctors I come across are stupid Idoits! I have had TMJ for over 6 years, I went 4 years trying to figure out why I have having all this pain ( bad headaches, clicking in jaw, pain behind the eyes, etc)..I could go on forever too...lol..I figure out I had TMJ on my own, and then saw a specialest that confirmed I had a bad case of it, but didnt help me at all, made me worse... so I went from doctor to doctor trying to get so help and couldnt find knowone to listen to me! I have gone a long time in pain and was taking OTC like candy to try to ease my pain. I finally got insurance so I can go to the doctor again, but I am in the same boat, I cant seem to find ANYONE to listen to me. If I ever recover from this horror I think I will go to medical school and become a dam TMJ doctor so I can help people! Because the doctor we have today, are not imformed about TMJ AT ALL and they really need to be aware of the affect it does to us and oue bodys. Take care everyone Starr IP: Logged |
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kat721 Newbie Posts: 0 |
posted 03-11-2003 03:04 PM
Elaine, Post>>> I asked him why migraine meds don't work when I get these headaches? I get the pain behind the eye, throw up for hours at a time<<<< I get headaches like that. Mine got really bad a little over a year ago when I was going through some other body problems. IP: Logged |
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Luigi12 Member Posts: 41 |
posted 03-13-2003 11:06 AM
Starr,  I actually saw a neurologist to get the definitive diagnosis of neuralgia, although my family doctor had already diagnoses Bell's Palsy years before. The neurologoist can do a series of tests, mainly hands on, to diagnose. the neuro problems. They also have specific testing machines (I've fogotten it's name) if required. In my case, I have such pronounced hypersensitivity that the touch of a feather sends me thru the roof so it's fairly obvious. Try a neurologist. It certainly helps to explain the pain factor if that diagnosis is present. Good luck. Donna (Luigi12) IP: Logged |
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Luigi12 Member Posts: 41 |
posted 03-15-2003 10:39 AM
Dear Starr,Ignore this post and read the next one...it makes more sense. Luigi12 :) It sounds like the facial 7th nerve which has three brabces that meet just under the ear behind the foramen ovale. (My anotomy is not exact.) The branches cover the sensation of the head and face, one covers the temple region and up, one the cheek area and one the lower face and neck region. If your insurance in an HMO you really are stuck if you can't get a referral from you primary care physician. However, if it's a PPO then you shouldn't need a referral and can make the appoinment with a neuralogist yourself. Even a neuralsurgeon. My ENT is also a cranal surgeon so I have the best of both worlds...he knows the head better than some OMFS's. And I am on Medicare Disability so I'm not hindered by the need for referrals. But my physicians are very good about suggesting I see specialists when necessary. I admit it...I'm very lucky. I don't know where in California you live but your best bet might be to find a University medical school. Those docs are used to uding the resources available within the University system. I no longer see a dentist for the TMJ but was also furtunate in finding one that was on the leading edge of the issues back in the early 80's when I was first diagnosed. Not every doctor is right or caring...especially those who have little experience with TMJ. Sometimes you just have to keep looking until you find someone who will listen. If you get to a neurologist he/she will know what tests you require. Without knowing much more about your symptoms I couldn't begin to guess what you might need. Again, my problem is so pronounced that minimal testing was required. I have nerve damage everywhere on the left side. I can only suggest that, if you can't get a referral and need one that you have the right to see any physucan you thing might help...but would have to pay for the visit yourself. It's not exactly fair but it is a way to get some badly needed help. I truey wish you the best. Luigi [This message has been edited by Luigi12 (edited 03-15-2003).] IP: Logged |
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Luigi12 Member Posts: 41 |
posted 03-15-2003 10:50 AM
Starr, I'm not sure what tests are avalilable these days. My testing was done in the early 80's and hopefully they've improved them by now. I have nerve damage to the 7th facial nerve which branches into the three main sensation nerves covering the face, head and neck. That branching occurs somewhere just below the ear at the foramen valley (left and right). If you do not have an HMO you shouldn't need a referral to see any specialist. If you are covered by an HMO then you still have the right to make an appoinment on your own and pay for the visit yourself. (Not real fair, is it?) But I've done it myself and thank heavens I did! Other than a neurologist or neurosurgeon I don't know who could help you...maybe a cranial surgeon? My ENT is also a cranial surgeon and has helped enormously in my care. I would suggest that if you live near a large university with a Medical School that may be the right road for you. They are used to using the resources available in the hospital. Are you near UCLA, Stanford, etc? You might get bounced from department to department but eventually will probably find someone who can help. The other route you might want to consider is that your problem could be circulatory...but that's rare. I truly wish you good luck. Luigi  IP: Logged |
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goodwillstacy Senior Member Posts: 177 |
posted 03-17-2003 04:25 AM
Starr, To answer your question, I see a neurologist for the headaches and nerve pain. I really like him and he seems to understand my headaches. Most of my drug "arsenal" is because of his insight. It might be worth looking into. Hope you are feeling better, .stacy. IP: Logged |
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thisstarr Veteran Posts: 386 |
posted 03-18-2003 01:30 AM
Hi Stacy, Thanks for letting me know I am on a waiting list to see a nero so hopfully they will call soon! Take Care, Starr IP: Logged |
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thisstarr Veteran Posts: 386 |
posted 03-18-2003 01:38 AM
Hi Sue & Elaine, and anyone that wants to reply... I wanted to know in all your years with dealing with TMJ have you ever suffer from Rebound headaches? And if you have could you tell me how you coped with it and how you got rid of them! I was taking so much OTC junk and now that I got insurance and are on medication I stopped taking the EX tylenol and my headaches are 10 x worses,I feel like banging my head againest the wall, only if it was that simple we all would be happy campers.I just want to die, the pain is so horribly bad...I just wanted your guys input on it and how you handle it. Also my massage theapest wanted me to ask have you tried cortzoine shots in your jaw joint before? and did it help any? Take Care, [We are trying to clean things up a bit, with the language - to avoid the cuss words - even words that are suggestive of cuss words. Thanks for your cooperation - Well-come Moderator.] [This message has been edited by Well-come (edited 03-19-2003).] IP: Logged |
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goodwillstacy Senior Member Posts: 177 |
posted 03-18-2003 02:40 AM
Starr, Rebound headaches are common with people who use over the counter medications.. The medication eases the headache for a little while, but when it wears off, the headache comes back worse(and then, you take more medicine). A vicious cycle develops. Caffeine can also cause the same thing, because as you probably know, some headaches will respond to a couple coups of coffee. But, after you drink it, you go into caffeine withdrawl. I've heard that caffeine withdrawl is the reason most people in the U.S. have headaches. Anyway, the best thing would be to taper off all short acting medications and caffeine. (this is, of course,e easier said than done!) After you are off all of those medications, a neurologist will put you on a preventive medication like your Neurontin. Also the standard things apply, like keeping your sleeping schedule normal, eating regularly (which is so hard with this dang disease!), exercise (also hard), etc. A normal headache patient will be better after all of these measures were taken. But, with us, it takes more. One thing you might want to consider is a long acting pain medication (oxycontin, methadone, etc). Those stay in your system and keep the medication levels steady so you are not up and down with the pain level. There is also no rebound. To answer your question about the cortisone injections... I have had injections in my jaw- both anesthetic and steroid. First of all, just to warn you, they hurt really bad, especially if you are in a bad flare up. Personally, I didn't see any relief, in fact, they locked up my jaw even worse. I've tried them 3 times with no results. Some people swear by them though... Anyway I hope this answered some questions, and that you feel better, .stacy. IP: Logged |
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thisstarr Veteran Posts: 386 |
posted 03-18-2003 03:44 AM
Hi Stacy,  When I went to the doctor last week I actually had the doctor give me Neurontin, I took it years ago for headaches and I saw on here it has help a lot of people. At one point I was taking like 15 tylenol a day. I was going though Advil & tylenol like candy, it got really bad, I didnt even relize what I was doing to myself, but being so depersete (sp) to get out of pain. I hope I didnt mess my liver up. I know that I am lucky I not dead, I was really over doing it, I was out of control, but not having any insurance and dealing with this pain with nothing to take it very hard to deal with. Not having any medication for 2 years was the hardest thing I probably went though. I was decreseing it daily, but since I have medication now do you think I should still take some tylenol? My headaches have been so servre lately and I know it is from not taking tylenol. None of the doctors will help me with pain mangment, they dont want to give me anything remotly close to Oxycontin.My insurance is bad, I have Kaiser have you heard of them? The MD doctor I saw today was really rude, he did not want to listen to me AT ALL about my TMJ, he was rolling his eyes and running his fingers in his hair like he was getting frustrated with me. I brought my mother alone for support and he didnt want to listen The shots didnt help you, thats to bad. Did they make you worse? I was not aware they could give cortisone shots in your jaw, my massage theapyest was telling me he thought it would help! Im sorry if I spelled a few things wrong, The pain behind my eyes is so bad I cant think or see stright. Thanks for informing me about this I appreciate so much Take care, Starr [This message has been edited by thisstarr (edited 03-18-2003).] IP: Logged |
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goodwillstacy Senior Member Posts: 177 |
posted 03-18-2003 09:59 PM
Starr, I don't have much time to write now, but I do want to ask you one question. Can you get to see a pain specialist? It sounds like you definitley need some help. If you need help finding one, let me know. Hope you feel better babe. I will write more later, .stacy. IP: Logged |
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thisstarr Veteran Posts: 386 |
posted 03-19-2003 12:53 AM
Hi Stacy, I asked the doctor and he told me Kaiser didnt have pain specialest, but I will call member servies in the morning to see if they do. I am hoping I will have better insurance in Jily when my husband can change it. Thanks for being so kind and understanding Take Care, IP: Logged |
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sunshine123 Veteran Posts: 425 |
posted 03-19-2003 01:42 PM
Hi Starr: I know all about Kaiser since I live in Ca. We had a choice to go with them or a PPO and we chose the PPO. With all the things wrong with me, I'm glad we didn't have to deal with Kaiser. I'm sure you'll be happier when you get new insurance in July. Good luck with finding someone to help you with the pain in the meantime. Sue IP: Logged |
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sunshine123 Veteran Posts: 425 |
posted 03-19-2003 02:34 PM
Hi Starr: I know all about Kaiser since I live in Ca. We had a choice to go with them or a PPO and we chose the PPO. With all the things wrong with me, I'm glad we didn't have to deal with Kaiser. I'm sure you'll be happier when you get new insurance in July. Good luck with finding someone to help you with the pain in the meantime. Sue IP: Logged |
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thisstarr Veteran Posts: 386 |
posted 03-22-2003 01:15 AM
Hi Sue, I really hate Kaiser, I am having such problems with them, I dont think they have changed one bit! Take Care, IP: Logged |
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) then all of a sudden I had servere pain all in my face and jaw and behind my left eye, the pain around my eye felt like someone was stabbing me with a knife in my eye.
I think having a headache every freaken day should count for something! I ask her for Neurontin, to help with the headaches, I took this years ago and thought it helped me, I cant really remember..I cant really remember a lot of thing anymore, it is like TMJ wants me to forget everything, I see why they call it the great imposter. I saw some others post on here about it helping there headaches. I think I will go back again and try to find a different doctor and maybe he or she will listen. When I try to explain all the symptoms I written down from TMJ and try to show them what TMJ is doing to me, they look at me like I am nuts! One of the doctors said TMJ does not cause all of these problems, only jaw pain... I really wanted to slap him in his face!