Chronic headaches no diagnosis, no cure...but always in pain, help??

Question

I can't take it any longer. I have always had headaches while growing up but they have become chronic DAILY for the past FIVE freaking YEARS!!!

I have had 3 MRIs. Been on Topamax, Imitrex, relpax, welbutrin, Zoloft, cymbalta, Prozac, flexeril, relafin? With no help, I have also had Occipital nerve blocking injections, been to a chiropracter, physical therapist, pain management specialest (who was a freaking joke).

I am now on valium and lexapro (antidepressant) and Loestrin 24 (to stabilize hormone levels) and am seeing a Neuro-Muscular Dentist who is treating me for early stage-two TMJ by readjusting the position of my jaw with thishorriblee retainer type thing that I have to wear 24/7.

It has only been a week with the mouth piece but I still have no relief. At night I am biting down on the hard plastic and wake up in even more pain. I am on disability because I am in so much pain I can't even work.

I am affraid of taking too muchTylenoll andibuprofenn and am aware that they cause rebound headaches, but I can't stop, even though they only help for an hour or so with an ice-pack.

I am 23 and about ready to pull the trigger, I can't take this anymore.....I don't know what to do. and all the d**n Dr.s I've seen don't know either. I'd just like to get through ONE day w/o pain.............

Answer 1

I have been exactly in your position, and its taken me about 20 years to figure out how to manage the pain.  I would have killed myself on numerous occasions to escape the pain, but the pain was so bad i couldn't stand the thought of moving.    Luckily, i have figured out how to make the headaches less frequent and the pain more manageable.  Since there are some many different types and causes of headaches, my experience may not be relevant to yours.

I had migraines every day, almost always in the afternoon or evening, but nearly every morning I would wake up feeling great.  Through trial and error, i eventually realized that the cycle seems to start with sinus headaches, and then morph into  tensions headaches or migraines.  Once i realized this, i began to look for ways to control the sinus headaches.  This took about a decade to figure out.

After trying all sorts of medications, CT scans, MRIs, ENTs, neurologists, chiropractors, etc.,  I finally ended up with an allergist who figured out what i was allergic to.  I eliminated exposure to those allergens as much as possible, and began taking allergy shots, along with a combination of decongestant to open the sinuses (generic version of the original 12-hour Sudafed), expectorant to allow the sinuses to drain (Mucinex) and two 24-hour antihistamines.  If I stop any one of these things, the problems become worse.

I still get headaches in the same pattern, but it doesn't happen very often  and i can usually stop the headaches by taking  Alleve and Acetaminophen together.  The bad headaches only happens a few time a year now.  This is a lot of drugs, but my liver has been tested after taking this combo, and it isn't' causing any apparent problems.  

So, if you haven't looked into any possible connection with allergies or sinus inflammation, you might find some way to manage this problem.  

One of the main culprits causing my problem was eating whole grain cereals since i am highly allergic to grasses and grains.

Answer 2

This will probably sound incredibly cliche, but hear me out.  It doesn't take much pain to get on a hamster wheel from h**l - you start with a headache, you stress, your shoulders get tense, you compound the pain, you take medications that might or might not work, or might have side effects that spin the wheel even faster.  You get depressed, you can't sleep and ta-da!  even more pain.  You are allowing the pain to control your life and it becomes a self-fulfilling prophecy.

The first thing you have to do is stop the wheel and get off.  You sound like you are truly at the end of your rope.  Biofeedback, medidation, a month in Tibet - whatever it takes to get your mind in a good place, even if the headache is still there.  You have to find a way to separate the rest of YOU from the headache.  Eventually you will learn what you can do to minimize the pain without the drugs, doctors or gimmicks.  Ironically, the first thing you have to accept in order to deal with the headaches is that you may never be rid of them, but you will be in control of them.  You can still use medication, but be careful not to let it overwhelm everything.  

And by the way, the TMJ thing?  Seems to me it's a 50/50 whether it's a real solution or just snake oil.  And I went through it, too.

Answer 3

you & and i were in the slightly same situation until i went to my neurologist yesterday :)

the thing with all the medications, and it's daily use, is true, that i think you are getting what is known as rebound headaches. i take pills every single day for my headaches and since there really is no other cause to my headaches, like the foods i eat, etc, my doctor said that it's because of medication overuse. i know taking things like ibuprofen are addicting because they do help a little, but for me they lost their effect and made it worse. what happened is that my body became so used to it that it became immune, and my pills started to BE the cause. i caught on to that and tried to stop taking it but i still got headaches, because my body still needed it and was going through withdrawl.

my doctor advised me to STOP taking the pills, even though i may get  headaches. withdrawl will last a couple weeks. so he gave me Maltax i think it's called... (?) for me to take when my headaches are just completely horrible and cannot function. it's just a little tablet you let dissolve on your tongue that you take at the time of a horrible headache, and if it doesn't help in 2 hours, take it again, but you can't take more than 3 in one day. (i've yet to take it, but i can let you know how it works if you'd like).

he also suggested accupuncture so that way i am drug free, and i suggest the same for you, since everything you've been on hasn't been working. :) i really hope this helps!

Answer 4

pain management specialist (who was a freaking joke).

Go to another pain mngmt clinic!  I went to 2 before I found the doctor I have now.  They other 2 were ridiculous, they didn't believe I was in pain and didn't want to help.  The 3rd took me seriously and actually cares alot about if I'm in any pain or not.  He is the best thing that happened to me medically.  He took me from 10+ pain on a daily basis to a 2 or less!  It took some trying, but it worked!  Keep your head up; chronic pain is the worst thing!  I went 4 months undiagnosed when I first got RSD/CRPS.  I was screaming in pain all day/night and the doctors just kept saying; it's just pain from your surgery; put ice on the knee.  I hate your in pain, but you need to continue trying to find good health care.  I never thought I'd see a day I could be pain free (I was using a cane the pain was so bad when I saw the pain doc for the first time; I'm 24).  I used to be suicidal and thought that I'd never get a 'break' from the pain.  People don't understand how mentally and physically draining it is!  But, I kept pursuing the care I knew I deserved and now I'm in such a better place!  Good luck!

Answer 5

I had the exact problem with headaches, and, oddly, it was ALL related to a bone spur in my neck and my back being out of alignment. 100% due to it.

The ONLY thing that helps me is chiropractic appointments where they adjust my neck and back, as often as I can afford to go.  If i have a headache, this will literally reverse the situation and make it go away.

I encourage you to seek another doctors expertise because you arent getting what you need from these doctors.  Please...know that many of us out here can relate and CARE how you feel.

Answer 6

I am sorry you are in such pain. You sound very frustrated and quite frankly I don't blame you. It sounds like you have been to many doctors, perhaps neurologists and a pain specialist.

Problem is none of those specialize just in headaches.  I see no mention of steroid or IV infusions to break your pain..find a headache specialist near you (perferably a headache clinic) and get to see this person as quick as you can.

Do some reading on the net..MAGNUM is a good resource for finding clinics as is MyMigraineconnection dot com. I have listed my resource page for clinics below.

One of the problems many docs make in headache treatment is doing sequential meds..if A doesn't work let's try B!  This approach usually fails..A, B and even C and D need to be taken all at the same time in addition to lifestyle changes, vitamin therapy, physical therapy and much more..

Good luck..don't give up!!

Mary Kay Betz, MS RPA-C

http://www.headache-adviser.com/headache...

Answer 7

The best tip I ever got was to eat hot peppers. The compound in them called capsaicin helps to stop headaches.