Posted 8/17/2008 3:39 PM (GMT -6)
Can't you just log on and check your posts for replies? You said something about not having been notified of replies...
Have you ever taken a cerebral vasoconstrictor like Imitrex or Relpax - maybe the sumaptriptan you mention is one. If it didn't do anything, why do you think you have migraines?
There are drugs like neurontin, that you can build up with from 50 milligrams to over a gram, that dull the nerve impulses. I hope that you have taken them until you are a bit sleepy all day long, and then see how/if it affects your headaches.
I assume you are keeping a headache diary to see if you can find triggers, either stress triggers or allergy triggers or something else.
From the info you have given it is difficult to know if you are developing allergies, which often don't show up until you are grown - try the strongest antihistamin, Benedry (diphenalamine 50 mg) every 6 hours for a week or two to see if that's what's going on with the sinuses.
How is your quality of sleep? Stress can cause the skin problems you speak of.
If you could take enough nerve dulling drugs like neurontin to relax, you could exercise and see if that helps.
Have you done a food allergy journal where you stop all the usual suspects, and then add them back in once every 2 weeks to make sure that nothing you eat is kicking these off?
You said something about TMJ, but maybe you should read my experiance to make CERTAIN that you have ruled out teeth grinding (bruxism) or its silent sibling "jaw clenching" which in less than 5% of headachers can be the cause, especially when you talk about neck spasms. Are the spasms mainly radiating out from the jw and involving the sterno/clavo/masoid muscles? I notice that you are very vocal about describing your problems. Since you haven't been able for some reason to reply specifically to those who responded to you, I'm not sure you (or anyone else for that matter) would have the patience to read this critically. It would require careful reading without making any rash assumptions - maybe you can get your mom to read it too, since 2 heads are better tahn one.
Here's my experience, but be aware that it is very rare:
Disclaimer: this is all theory since Botox is not approved and no clinical trials have been done. The official TMJ site says, for example, that temporary TMJ should be treated with anti-inflammatories, rest, heat etc., and severe TMJ with those plus pain relief. Wikipedia's bruxism entry is pretty good. I highly recommend that you read it carefully. But, bruxism's insidious silent sibling 'jaw clenching' just isn't covered anywhere, so here goes:
if you have teeth grinding or jaw clencing, get them cured or a mouthguard is useless and only delays tooth damage, not damage to the jaw joint or potential painful chronic neuromuscular joint disorder which can trigger migraines or even produce pain attacks that aren't migraines. Most dentists and doctors do what they know to do as opposed to figure out with the patient what really needs done in the right order. So if fixing your bite does not stop the clenching or grinding, you need to check out the first link below to the UC San Diego Dr. Davidson. Make sure you read not just his sample consult but also the notes at the end. Skip the next 4 paragraphs unless you want to learn how much time and $$ can be wasted diagnosing and finding the correct treatment for jaw clenching or bruxism (my saga).
I broke my neck and thought so during an injury in the early 90's. An HMO trying to save $$ told me that my swollen useless hands and arms HAD to be carpal tunnel because I worked in computers, and for 3 1/2 years said it's better to avoid surgery and do hand therapy, while I kept asking for a neck x-ray. When they fired my doc and gave me one, they rushed me in for titanium lamination of C5-C7. It stopped the progression of nerve damage, and I learned to hold my head up and got a little use of my hands back. Dug 6 months in the garden with a screwdriver, then a spoon, and in 2 years a mini shovel. Got a little of the use of my hands and arms back. Why am I telling TMD people this?
Because my headaches and neck/shoulder pain etc. got worse and worse!! Asked alot of docs - what's this ear pain -- "oh we can give you surgery to open your swimmer's ear "-- what a waste of time and $$. Asked the dentist about the jaw pain and muscle spasms. Dentist said mouthguard -- didn't help at ll. Another said bite correction - $$$ and useless. An ENT really lost me time (more than a year) saying I need an arthoscopic TMJ jaw flush with saline. He said his surgery was a complete success, with much arthritis removed, so I should get better and that's the most that anyone can do. The HMO had told me to suck it up on pain for 2 years, to let the nerves calm down (after 3 1/2 years of my cord kinked and folded over on itself ) -- another waste of painful time, (but not for them since that's the statute of limitations).
Suicidal by 2003 with constant migraine like headaches coupled with spastic colon and major muscle spasms down to my toes. Not enough time between attacks to recuperate - either exhausted and concussed and sore from spams or getting the next attck. A brain scan showed lots of tiny points of white (dead) matter in my brain from venous occlusions. Told me time to test for MS, but was negative. By 2004 virtually bedridden while pain center says not clear enough diagnosis because lamination solid, and not enough radiculopathy to explain pain. So, I kept going to any surgeon or doc who would see me (not many), and in 2004 an emergency room doc said to try Imitrex and the newer Relpax which helped shorten attacks a bit. There's lots of well meaning docs and dentists out there, but almost none knew to look for the neuromuscular disorder Temporal Mandibular Disorder, which includes my jaw clenching, which can silently and unconsciously occur day and/or nite.
All the above docs suggested that I am attention-seeking, need psychiatric help, and some rejected me. Neurologist put me through all migraine prevention drugs for 18 months, and nothing worked unless it knocked me out. Got a little relief from 2007 baclofen and zanflex, but just enough to get out of bed a few hours a day. Writhing with pain despite opana, and the latest headache specialist said it MUST be migraine because I admitted to getting hangovers if I drank alot (last time was 30 years earlier in college). Despite no family history! Despite beginning in my forties! He wanted me to spend a year plus cycling thru the same migraine preventatives again, this time with no muscle relaxants or painkillres. I was concussed and exhausted from pain attacks or was in the middle of a pain attack, with no time to heal the pulled muscles I'd get from head to knee between attacks. Went back to the internet, as I did each year, and this year found new stuff on bruxism (or its insidious silent sibling jaw clenching).
Self diagnosed jaw clenching as my main trigger of pain attacks, and convinced my pain doc to botox my masseters - he'd just looked up a 2-shot protocol (which spots to stick) in a doc-only database. Within a week I got some relief and proof that I am now on the right track.
Have convinced an experienced TMD botoxer to consult with my pain doc for the next botox, since the protocols aren't set yet (I think it's supposed to be 4 or 5 along each masseter, not the 2 that I got). Time'll tell. Worst case is you eat liquid or mush diet 3 months if more Botox than your particular case needs, but I don't mind that, since I'm already thinking of just pulling all my teeth! (Many people have told me this cured their headaches). Actually, I'm thinking of taping my nose shut at night to see if mouth breathing prevents clenching. I wish I'd known more in 2003 when a bad attack would pull my lower jaw so hard that the teeth didn't meet and my whole head would get inflammed!
What you need to get checked for is teeth grinding (Bruxism) or its insidiously silent sibling "jaw clenching". Only 5% of Bruxers go on to develop chronic pain, but it can even trigger migraines occasionally. Even more rarely, you can get so much pain that you develop central sensitivity and so much inflammation that it includes migraine-like headaches as just one of the pain attack symptoms. After botoxing for my jaw clenching, I have far fewer "pain attacks", and am now working on trying to stop the neuromuscular disorder of jaw clenching (TMD is what causes Bruxism or jaw clenching although some dentists think that a bad bite alone, called malocclusion, can cause it).
The sooner it is diagnosed, the easier to correct. Since its causes are partly hereditary and mostly individual to that patient's stress responses and jaw anatomy, there is no single cure. Fixing your bite, mouthguards to prevent tooth destruction, and dental restoration are things that dentists know should be done, but preventing the cause (stress response? bad bite?) should instead be done first. A few sleep studies check for it (the original at Stanford).
Jaw clenching can be as much as 40 minutes of massive force per hour while sleeping . Sum of all eating clenches in a day is little more than 20 minutes, so you can see how nighttime could wear through mouthguards and your quality of life. Read the first link below, especially the notes after the doc/patient consult transcript. TMD can, although very rarely, be disabling. I sometimes wonder if maybe 1% of migraine and cluster headache sufferers should cure their grinding/clenching instead.
To diagnose and cure your TMD or TMJ caused by teeth grinding (Bruxism) or jaw clenching, study Bruxism in Wikipedia, and at least the web page below by Dr. Davidson at UC San Diego. Don't skip his notes at bottom titled "Additional Thoughts".
To summarize the web pages below, the patient suffering from the chronic pain of teeth grinding or jaw clenching may have anything from local pain to severe cases of inflammation with spasms so severe that they set off migraine-like headaches requiring cerebral vasoconstrictors, and/or neck and shoulder pain that can even shoot down the arm. The variety of symptoms and their severity can make diagnosis difficult. The patient can also have eventual or causitive damage to the jaw joint(s), teeth, and maybe bone loss. Severe cases may not be treatable until a short course of Botox breaks the cycle. Kids usually go through and spontaneously outgrow Bruxism.
After diagnosis, the actual cause of the grinding or clenching must be determined and eliminated. This can require stress reduction and/or dental restoration to fix a bad bite (malocculsion). Botox alone, done repeatedly, without fixing the cause, will eventually damage the jaw muscle permanently. Use the relief period Botox gives you to learn how to stop the activity. Usually stopping E.G. jaw clenching requires an investment of time (stress identification and reduction). Usually insurance does not pay for Botox and some of the other TMJ/TMD treatments since there is no one-size-fits-all treatment that insurers can cost justify.
Something to try for daytime unconscious jaw clenching is to let your tongue rest comfortably in your mouth with the front or back of it resting comfortably just touching the upper jaw. Then let your lower jaw rest up against your tongue, without actually biting the teeth together. This is an attempt to find a "stable" position for your lower jaw that does not stress your jaw joint. Try to make it habitual.
http://health.ucsd.edu/specialties/surgery/davidson/consults/tmj.htm is the UCSD professor Dr. Davidson, who, at the bottom of a "typical" TMJ patient/doctor script, writes his "Additional Thoughts" paragraph, in which he says that Botox is not a cure for TMJ. At best it should be used temporarily only with those whose grinding, clenching, or spasms are resistant to all therapies. Without curing the original cause, which is usually how the patient handles stress, Botox will eventually weaken and damage the jaw permanently. He also says that pain killers are wrong, leading to nothing but addiction. Lastly, he says that since TMJ is a chronic pain problem, patients should be prescribed amitriptyline (where not contraindicated) in doses of 5, 10, or at most 25 mg. before bed. Although most doctors start at higher levels, he says that anything higher will create unnecessary side effects like sleepiness, without working better.
http://www.westsidemedicalspa.com/tmd-treatment.los-angeles.html is the page for Dr. Rivkin, who does non-surgical cosmetic procedures plus a lot of Botoxing of TMD, which he says is sometimes enough in itself to cure grinding or clenching. Search youtube or metacafe for his 2 min. ABC news segment.
www.designersmilz.com/html/tmj.html and www.designersmilz.com/html/reconstruction.html are a couple of web pages of Dr. Correa, who practices 'neuromuscular dentistry', which is appropriate since this is a neuromuscular disorder currently being treated by doctors, neurologists, and dentists, and may require therapy in cases where causitive stress response is difficult to identify and/or reduce. Dr. Correa concentrates on the need for accurate diagnosis of exactly what physical problems have developed, and the need for anything from fairly inexpensive to extensive and pricey restoration. But the main thing is to diagnos the CAUSE and fix it before spending alot of dental dollars.
Be aware that Botox is not approved (paid for) by insurers for TMD or TMJ, so find a doctor who will charge you his price plus processing for the vial itself. Ask Walgreen's what their current price is. Then you will still have to pay for the treatment(s). Since causes range from bad bite to stress response, there is no single treatment. Also, it's pretty rare that Bruxism or jaw clenching progresses to this level of pain and damage. Even if 20% of the population is doing it, only 5% get pain, and maybe less than 1% of refractory migrainers or cluster headaches are cured by identifying and stopping TMD.
As more people get relief from Botoxing, even if it is temporary, better stats will come out on what % of people are not whiners or migrainers or cluster headachers, and more doctors will think to check for and treat it. It's not that hard to diagnose if your doctor or dentist includes checking for sore masseter (jaw) muscles, sore related muscles, joint soreness and movement problems, and pattern of teeth wear. But, right now, the patient has to be the one to make sure these problems are ruled out or diagnosed, and the patient has to be the one to make sure that the cause is identified and treat (stop) it.