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Chronic headaches, other related symptoms
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Chronic headaches, other related symptoms

I am a 32 year old female, otherwise healthy until I started having chronic daily headaches 2 years ago.  These headaches are ruining my life and I do not know what to do at this point.  My physicians want to take me off of the only drug, fioricet, that is helping me due to the possibility of "rebound headaches".  I am not sure why they have chosen this path; I had the headaches daily for 2 months prior to starting any RX medicationss; of course I took OTC meds off and on during that time (they didn't work so it was rarely), but to me the fact that I had these headaches for so long prior to any RX meds shows that meds are not "causing" the headaches.  At this point I really do not care if I do have rebound headaches, as long as I have something to STOP THIS PAIN. And I also don't care if I have to be on pain meds for the rest of my life, I just want my life back, even if that means it may be shorter or I may have side effects from the meds that actually help my head pain.  It would be better to live a short, happy life than suffering constantly forever.  I cannot continue to work much longer without something to stop this pain, however I am currently supporting my family as my husband is out of work and in school.  I work in a professional position at a bank and it is nearly impossible for me to concentrate and be productive when I do not have any medication for my pain.  It just does not seem right to me that they would take away the only thing that gave me my life BACK.
The pain in my head is nearly unbearable; it started on June 8, 2008 with an awful migraine that sent me to the ER for the night.  I was very nauseous and vomiting frequently, and I had the migraine for two days.  While in the ER I had a CAT scan (clean) and they gave me a shot of Dilaudid which did not even touch the pain.  The severe, nauseating pain basically just went away on its own and since that night I have had chronic daily moderate to severe (mostly on the severe end) head pain ever since.  The fioricet has been the only thing that works, and it isn't as long lasting as it should be, but its been the best thing for me so far.  The pain I have ranges from all over my head and base of my skull (a tight, deep ache feeling) to one sided migraines that cause my eye, ear and temple to ache and throb (sometimes my temple will be visibly pulsating and my eye will feel dry and pressurized as if it is going to explode).  I also have constant pain in my neck and the base of my skull - a burning, aching feeling, and my right shoulder and arm (down into my hand and fingers) hurts constantly as well.  I have a lot of muscle spasm in that area too.  
I have had a clean MRI of my brain and cervical spine (except for some protusions in some of the vertebrae in my neck, the DR didn't seem concerned about this), and X-rays showed moderate arthiritis in my neck.  I have had the following meds/TX:

neurontin, topamax, fioricet, advil, elavil, propranolol, other beta blockers and calcium channel blockers, countless other antidepressants and muscle relaxants, physical therapy for my neck, chiropractic treatment, cortisone injections in my shoulder blade/upper back area, all kinds of NSAID's, several different triptans, and Vicodin.  And nothing has stoppped the head pain except for the Fioricet and for the full blown migraines that I get sometimes, Relpax worked.  The Vicodin works well but wears off in about an hour, so its pretty much useless too.  I am currently on topamax, elavil, and neurontin, with fioricet (very few) and imitrex to take as rescue drugs.

And the only thing that seems to help is the neurontin (it helps my carpal tunnel, not my head) and the fioricet, and the imitrex for the full blown migraines.

So could someone please give me some advice on what to do now?  I have weaned off of everything in the past, still had the headaches, so they are not rebound.  Even if they were, I still want some treatment that helps!  If at some point I am told that I am just going to have to live with this pain, that isn't going to work for me.  I want my life back - before all of this started I was happy, very active, energetic, and a hard worker - no I am unable to do anything without the meds.  If they take the fioricet away, I will end up filing a disability claim, and although I know that is probably futile; I just don't know what else to do.  I cannot work in this state.  I'd also like to add that I have a very high tolerance to pain - this is DEBILITATING pain that I am dealing with every day.

My guess is this could have been caused by dental procedures that I had shortly before all of this began back in 08'.  I had a wisdom tooth pulled in a particularly violent extraction  (particles of bone were coming out of the site for weeks afterwards, it took forever to heal).  I know this is rare, and when I mentioned it to my dentist he was fairly smug about it and "had only seen a few cases of this happening in all his 40 years of dentistry".  So I am at a loss for causes, and for a way to make my neurologist see that I CANNOT AND WILL NOT LIVE THIS WAY.

Any help or advice would be so wonderful, I know this is really long but it feels good to finally post it up somewhere. My neuro doesn't seem to care at all that I am suffering; I can't get through to her that I am not going to be able to work much longer, and I don't know what I will do if it comes to that.  I have no children, but we also have no savings, I can't afford any more Dr. appointments as it is.

Thank you to anyone who reads this.
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3 Comments Post a Comment
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Avatar_n_tn
so sorry for your headache history.  My husband, too, suffers daily, and had to quit his job because of it.  We have tried many, many drugs and procedures, with little, or short-term results.  The only thing that worked for 3-4 months of relief was when he was under sedation for surgery!  This helped 2 times, but you can't convince anyone to try it.  Maybe the Mayo clinic could help?  ***@****
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400867_tn?1371756694
OMG, I am also a 32-year old female and what you wrote is me EXACTLY. Isn't it horrible??
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Avatar_f_tn
Have you gotten any answers yet? I am a 28 yr old woman that has been going thru the same thing, I recently tried to sched an apt with my neuro and they put me out 7 weeks! I know what you mean in saying that they just dont care! I have been doing a lot of research myself and found the headache foundation @ www.headache.org, they are very helpful and will send you information so you can educate yourself and have more effective communication durring your Dr. appt's.  Good luck!
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