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View Full Version : Does Anyone Here Have a CONTINUOUS Tight Headache?


 

 

 
looney
09-30-2004, 12:22 PM
Dear Group,

I've been here on and off over the past two years. To make my long story short, I developed TMJ problems after I came off of Klonopin (Clonazapam) too quickly two years ago. The drug has muscle relaxant properties, and when I came off fast without a good taper, I experienced very very severe rebound muscle tension, especially in my neck, shoulders and face. Within months, I noticed my jaw was clicking and it's been downhill since. Before my jaw even started clicking/popping though, I developed a very severe tight band headache that is especially bad in my temples and scalp and at the base of my skull. I still remember the day this headache started. It has been continuous (no exaggeration) for the past 1 1/2 years! It never stops.

TMJ doc #1 provided me with two splints, both of which I believe were way too thick (couldn't close my lips over them) and seemed to aggravate the condition. I gave up on him after 6 months of awfulness. TMJ doc #2 confirmed that I do have two dislocated discs without reduction. He also made a splint for me, and I seem to be doing much better with this splint than the others. I have increased my mouth opening from 26 mm to 36 mm. The clicking is less, I have less ear pain, decreased facial tightness, less eye pressure, and generally less jaw pain. The problem is that my headache/head tightness hasn't budged. I've been receiving this new TMJ guy's treatment for almost 10 months now, and still, the head tightness won't budge, and I'm very disappointed because it is by far my worst symptom.

I'm beginning to wonder if I have some other neurological problem due to the severe withdrawal syndrome I've been experiencing post-Klonopin. I went through a horrendous withdrawal, and I still have other problems such as an inner vibration, muscle jerking, sleep trouble, stress sensitivity, and tinnitus/hyperacusis that began the day I first dropped my Klonopin dose and continue until this day - 2 years later.

I don't know where to turn. I had an MRI done of my neck which revealed no problems there (it made my already bad auditory problems much worse though, and I wouldn't recommend a noisy MRI to other people with auditory problems).

I thought I would check in with this group again just to see if it is a common TMJ problem to have a truly neverending, continuous, severe tight scalp, temples and head. For you out there who have headaches, are they continuous and are they of this nature?

Another thing I should probably mention is that I haven't had TMJ for years and years. This did not come on gradually. It came on suddenly, with the headache preceding any jaw clicking whatsoever. Even my TMJ doc is surprised that my discs both dislocated so quickly and my headache evolved to this point practically overnight. I attribute this again to the severe muscular spasm the Klonopin withdrawal caused me. I have researched headaches, and the literature states that tension headaches are rarely severe or disabling, but let me tell you, this beast is very severe and very disabling. There is no way I can work right now, and I'm in constant pain.

I am sensitive to drugs, so I don't take any, and I don't want surgery because I fear the drugs and I have lost confidence in many physicians. Drugs and doctors did this to me in the first place. Yet, I can't imagine how I will survive in this state long-term.

Please help,

Looney

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cvella
10-01-2004, 08:21 PM
I also get continuous headaches that can last from 4 days to 4 weeks with maybe one day of relief. I have tried numerous migraine meds (Imitrex, Relpax, Fioricet; Fiorinol, etc) without relief...I sometimes get temporary relief from excedrine migraine, advil and zanaflex (msl relaxant). I've had my current headache for 2.5 weeks (ARGH). Ice following a hot bath helps me "deal" with this. And exercise, when I can, also can relieve any stress from feeling miserable ALL THE TIME. You are not alone :) -not sure if that is any comfort though. My pain is in both sides of the jaw, temples, head (all over), neck, upper back.

daydreamer504
10-02-2004, 12:13 AM
Looney, I have these headaches too. The dentist says they're due to temporal tendonitis and a possible tear in the tendon. Maybe coming off the Klonopin so fast made you clench and aggravate the tendon. An NTI has given me some relief, but we're going to have to pursue cortisone injections and prolotherapy to help the tendon heal and reattach to the bone. A moist towel thrown in the microwave for a couple of minutes provides more relief than anything. Indocin (anti-inflammatory) and zanaflex help some, but it's not a migraine, so migraine meds are useless, pain meds work a little better (ultracet seems to help). I can let you know if the injection and prolotherapy help at all in a couple of weeks if you would like.

daydreamer504
10-02-2004, 05:08 PM
If you are allergic to sulfa drugs, you will react to the lidocaine or other anesthetics they may use if they aren't aware that most of them have sulfa based preservatives in them.

Also, cortisone injections hurt like crap for the first 48-72 hours and they just don't tell you that up front. It DOES make it worse at first, depending on where the injection is, but it should get better in the long run if it's cortisone.

I'm not sure what was the case with you...I've had both happen to me. Neither one are fun, but I'm desparate, so we've found an anesthetic without sulfa in it, and I'm going to live through the 48-72 hours of intense pain, hoping in the long run it will help. Somethings gotta give here.

I'm sorry you can't manage to find any relief.

looney
10-02-2004, 08:32 PM
Dear all who replied,

Thanks for responding, and I appreciate your input very much. Daydreamer, I would be so interested to hear how your prolotherapy, etc go. Please keep me posted. I'm also sorry the other thoughtful person who responded said that her injections made things worse. :(

The hardest part for me is the fact that I NEVER feel okay. I am always truly suffering with this head pain/headache/whatever is making me so miserable. I do get the classic migraines periodically with the aura, etc, but this is unlike those headaches, and yet, it is much more severe than any other tension headache I've ever had. Taking a hot shower feels good initially, but afterward makes my head feel like it's going to explode with pressure/tightness.

I feel so stuck - - now on my third splint, unable to take meds, and unsure as to how much of my problem is TMJ vs severe post-withdrawal syndrome.

Someone above mentioned the temporal tendonitis. I definitely feel the majority of my pain and tightness in this area. It pulls really hard, like my muscles are too short in my temples and the skin too tight over my head, especially the side/temple area. So maybe that's an avenue to look into. I guess I hoped the splint would help these muscles.

I'm so scared because this has been going on nonstop for 18 months now. I feel like I'm losing the expectation that it will ever get better now. It is hard to remember feeling okay or even close to normal and not having this pain.

I'm trying hard to keep my chin up.

Looney

cvella
10-02-2004, 08:59 PM
I have also had bad responses to trigger point injections in my facial muscles. It made my pain extremely worse. I have had successful trigger point injections in my neck and upper back with a Physiotherapist (Rehab doctor) so I think the facial muscles are more sensitive. Some research I read on Botox and TMJ mentioned that if you inject too much in one muscle versus another, it could cause a muscular imbalance and cause more pain- maybe the same concept with trigger point injections.

Daydreamer 504, please let us know how your prolotherapy goes. WIll they inject the joint or another part of the facial area. Thanks.

daydreamer504
10-03-2004, 12:53 AM
Yes, Amy, you probably reacted to the anesthetic in the injection...I did the same thing and was absolutely miserable and the OLD dentist (I left him) didn't believe me and made me call my allergist and didn't try to figure out why something HE prescribed caused me so much pain and allergic reaction. I figured it out by researching on these sites, with the help of my allergist, how sad is that?

Prolotherapy is injecting sucrose into the tendon (not the joint, thank goodness) to cause mild inflammation so that the tendon will regenerate and heal itself and reattach to the bone. It is a series of injections, but everything is natural that is already present in your body. It will be interesting to see how it works. I have read about it online some, but am not certain that I fully understand all about it yet.

I definitely know how frustrating this all is...I've been like this since January...some brief respites of relief, but overall very frustrating. These headaches hurt like the migraines because they won't go away...at least the migraines respond to abortive meds, these don't. ARGHHH!!!!!!!

daydreamer504
10-03-2004, 12:14 PM
I don't think it says sulfa in the ingredients...you really have to dig because it is a preservative of the med...strange and very scary...I had to educate my new dentist about it too. Once I showed him the research, he immediately understood what was going on. They need to do a big article in CRANIO or something about that because these dentists don't have a clue what they are putting into our bodies with this particular med...they know to put epinephrine in with it, but that just kept me out of anaphylactic shock, barely. I have allergic to sulfa drugs on my list of meds too! I had 2 inches of itchy edema on the right side of my body for 3 days and was totally out of it BEFORE I had to start taking benadryl around the clock, after that was worse. My old dentist didn't even call me back when I called in asking what to do. Then he wondered why I left the practice the next week. For me it was a blessing in disguise because I really like my new dentist and I learned about these meds without something serious happening to me. This was just iontophoresis. Trigger point injections probably would have put me into anaphylaxsis.

I don't think your headaches are migraines, but you could see a neurologist just to check it out. My neuro can tell the difference between my migraines and my TMJ headaches, most neuros and dentists can't. I can tell because he's taught me, but it's hard to explain...part of it is where the pain is coming from...does the back of the head/neck hurt too? Are there sore spots/tight muscles on my head or just the vessels throbbing? Did I have an aura? Is it getting worse or staying the same intensity? Do I have other symptoms, etc.

eternal21
10-04-2004, 08:53 PM
does anyone not have a headache but you feel the back of your neck is always in tension?? any ideas? I have massages once or twice a week which helps but it always seems to just go back..

daydreamer504
10-04-2004, 09:14 PM
Biofeedback?

Joyce2
10-06-2004, 01:57 PM
Hi, I haven't been to the board for quite a while, I had been seeing another new doctor and receiving botox injections to see if they would help, and they didn't........anyway, I about fell over when I saw your question....I've been dealing with 'head pressure' for the last 2-1/2 years...when my TMJ started in 1999, it was not accompanied by this symptom, but I now have it every day...have asked over and over if it is TMJ related, and have been told yes and no several times, so I don't know what to believe....but I had to respond to your question, because someone finally put down what I've been dealing with, along with tightness into my face, pain down my neck, not being able to eat anything chewy, without paying a price of pain....I've had headaches with my TMJ, but my major complaint is the tightness around my head....gets worse after I eat....I get relief when I can lay my head down at night...I've had doctors tell me that they think it is a combination between arthritis in my neck and the TMJ problem. I'm hoping to hear from you, and see if your tightness is always accompanied by a headache. Thanks, Joyce

buffster
10-06-2004, 02:59 PM
I just completed a round of steroids for the fluid in my joints and the headaches. However today I took my last one and they are already back next step is to have area irrigated BOO :( The headaches have got to be the worst most debilitating part of this TMJ deal every now and then I will have a GOOD day (not many) but now and then all the sudden it's like TMJ never existed. The thing i found to work best is the min you feel it coming on take a pain pill DON'T wait or the MEDS don't work at least in my experience

Wish you all the best
Buff

daydreamer504
10-07-2004, 01:34 AM
No, I don't always have a headache with it, thank goodness.

marcessna
10-18-2004, 11:03 PM
Hi Looney,

I have had the same issue for almost three years. I came off of zoloft too quickly, actually cold turkey after only being on it for a month and having severe reactions to it. As soon as I came off every muscle from my shoulders up tightened up and have been tight for almost three years. I couldn't even lift my eyebrows without feeling it all the way to my shoulders..Finally after three and a half years it is starting to go away. It has affected my balance, vision and vestibular systems. None of the doctors would belive that it was from the zoloft, but I know it was. The good news is that if you begin to stretch your neck, side to side and slowly it will go away but expect it to last for several more months. Judge your recovery in months not days or weeks...it did not even begin to feel better until I hit the 3 year mark. I am sorry for you as I know what you are going through.

Marc

serpentgirl
10-20-2004, 12:16 AM
Eternal, I have had a stiff neck and shoulders since I was first diagnosed 11 years ago when I was 16. I get massages every week, but yes, it always does come back. I use heat / ice and do some stretching excercises when it gets really bad, but for the most part, I've learned to live with it......A week ago I developed a headache across my forehead. It's not really an ache but more like a tightness. At first I though it was a sinus thing, but I had my sinuses checked out and they're okay. I've paid closer attention to it and it really seems to be muscoskeletal, so now I'm wondering if it's TMJ related. I've never had anything like this before so I'm kind of nervous about it and will be getting tests to rule out other things it could be, but I know a lot of the muscles in my head and neck are always strained, so there's a possibility it COULD be a TMJ thing, or at least a tension headache aggrivated by TMJ. Reading this thread has been very informative.

Joyce2
10-20-2004, 08:12 AM
I get my tightness above my ears, at the back of my head, and the tightness increases when I try to eat something. I've been told that the back of my neck and shoulders, and the TMJ disorder all contribute to all the tightness, I've yet to find any relief for it. Botox injections were not successful, so I'm scheduled to start with a new TMJ specialist in November. Best of luck to you in finding the best treatment for this horrible disorder. PS...my last doctor was sure that my problem was totally caused by a muscular dysfunction and not a TMJ disc dysfuction.

daydreamer504
11-29-2004, 01:32 AM
Prolotherapy was not the solution for me. I don't know what the deal was...maybe it's my immune system or the anti-inflammatories (both can cause problems), but I was miserable and didn't respond the way you are supposed to.

On a positive note...I just had trigger point injections (without anesthesia although I could have had non-sulfa anesthesia) done. The trigger point injections helped my headaches. Unfortunately, my posture is horrible and my balance is off because one leg is shorter than the other, so I will have to correct both of those with a shoe lift, posture brace and physical therapy and repeat the trigger point injections into the SCM. However, I should continue to get better. My opening has increased beyond 40 mm, and I have hope I didn't have at the beginning of the week. I'm pretty psyched about the whole thing.

dinam1119
01-05-2005, 11:39 AM
You are not alone,

I too have been suffering with tightness in my head and neck for quite some time. It hasn't been 18 months, but it has been 5 so far. I get the headaches that come with that as well and i don't know if you experience this or not, but I get a very sensitive and tender spot behind my ears, and right where my neck meets my head. I've been to every kind of doctor with no answers to my problem. I thought it might be TMJ, but my dentist didn't seem to think so. Whatever it is I can not feel normal, as you say too. My face is always tight, my jaw is always sore, my scalp feels tight, my neck hurts, and every once in awhile I get this very tight feeling by my right eye, like it's going to explode. And what's worse is it gets worse when I sit or lay down, especially when I lay down. I just want to feel normal too. But I have found some relief that I would like to share with you. I went to see my cousin, who is a physical therapist. She believes that somehow I injured myself while working out, and due to this have manifested all of these additional symptoms as well. She believes it may be a bulging disc. One major cause of all of this discomfort she says is improper posture. Another is stress. Since I've been so worried about what is wrong with me, I am always tense. It is almost psycosymatic. The added stress is causing me to tense up, and adding to my problem. She suggested going to see a massage therapist, someone who is certified. Massage therapy not only lossens up the areas of pain but also helps emotionally. It gets the blood flowing and releases any toxins in the area. She also suggested that I begin working out again since I stopped when I started feeling these symptoms. I also try to meditate to get my mind off the problem. Which is rather difficult since my head is the problem. Stretching also helps release some tension in those areas so I try to stretch my neck and shoulders as much as I can. I'm not sure if this will work for you but it has brought me some relief, and I know what it's like to want help or for someone to understand you. I am visiting her some time next week so I can tell you how it goes if you'd like. Just take a deep breathe, and try to relax. That's sometimes the best medicine.
Tori

Joyce2
01-05-2005, 03:13 PM
Thank you so much, Tori, for sharing and giving your time. I have gone through the Botox injections, massage therapy, physical therapy to no avail, although a massage can help you feel better no matter what, and I believe too has healing powers - I am now seeing another TMJ doctor and wearing two new splints....I also went back to my pain management doctor, and had new x-rays taken this week to see if my neck arthritis has gotten worse, the last time x-rays were taken it did not show any problems with discs, I'm anxious to hear if these x-rays showed anything...the latest MRI did show that the meniscus (padding) between the upper and lowers jaws shoots out when my mouth is in the closed position, resulting with bone on bone when talking, eating...living...anyway, I've been on this merry-go-round so long now...I'm planning to attend a chronic pain meeting...I appreciate so much that you took the time to share and absolutely would like very much to hear of your future progress...God Bless You...joyce

UKCATS
01-06-2005, 01:07 PM
My name is Jim, I know excatly what your going through. I had a tight band that was on both sides of my face, I had this for eight month straight and was going insane. I had to take short term disability just to deal with it. I went to many doctors and know one could help. My neurologist put on a medicine called elavil or sometimes known as amitryiplyne. This medication is good for muscle pain. It took a about six weeks for medication to build up but the tight band around by head did finally go away. I would recomend talking ty your doctor about this. Good luck.

Jim.

Joyce2
01-06-2005, 01:28 PM
Hi Jim - Thank you for your response. I've been on Elavil for almost 4 years. My one doctor wanted me to cut back recently and after a week and a half I have to increase it again - I feel the tightness coming back in my face....it has never alleviated the tightness in my head tho, maybe I should ask to increase the dose I've been taking all these years and see if that will help my head. Thanks so much for your time, God Bless!

UKCATS
01-06-2005, 01:58 PM
Joyce - One thing that i do on a routine basis is fill my tub with the hottest water i can stand and lay in it with the water covering everything but my nose. I do this for about 20-30 min. This is a great way to relax the neck,head, temple and jaw muscles. Give it a try if you haven't, it might help.

All yeah- the best time to do this is before bed. It will help yo sleep better and more relaxed which will help decrease any clenching. Deeper sleep has an effect on the healing of the musscles.

Good Luck.


Jim.

stasia12
01-06-2005, 09:03 PM
i dont have pain but i do have a constant feeling of tightness and imbalance, sometimes leading to really bad headaches for the past four years. its so bad that i constantly tilt myh ead to the right to counteract the feeling , and god forbid ive had any alchohol cuz that makes me so sick now when before i never got hangovers unless i drank ten times more. i havent discovered a cure-i massage alot if the pain gets bad or ask my friends too. depends on where your pain is but it def helps alot sometimes i have gotten rid of headaches just by massaging certain pooints.

JPGuinness
01-09-2005, 06:37 AM
I usually hangout with all the other face pain guys in the headache forum, but TMJ is sounding more and more like what I have. I'm diagnosed with atypical migraine headaches and atypical face pain. After reading a few of the posts in this thread, I really feel like this describes my problems better than anyone with a classic headache could. I do know one thing about Trigger point injections (trps). I got trps in my neck for myofascial pain and they seemed to work, but only a little. thene, when i switched to a better-trained myofascial specialist the pain got even better. so, i guess i'm trying to say that it is sometimes worth pursuing other docs. to receive better service performance in the same treatments.





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