My name is Kathy and I have a bit of a problem as far as pain management. I will try and make this as short as possible. I have been having headaches for about 15 years; they started suddenly and I really thought it was sinus, and basically didn't even want to see a Doctor at that point. After about 1 year of trying sinus meds (which would give some relief) ibuprophen, acetomeniphen, aspirin, moist heat (ENT Dr. suggested this for possible tmj) which the ENT Dr. is the first Doctor I went to regarding severe headaches. I was desperate, and had two small children to take care of, and my husband. When I explained to the ENT that I had been taking (otc) for a while off and on and that my headaches were actually getting worse, and I would have severe pain sometimes and didn't take anything so I would be able to deal with my daily activities etc. except advil or something not too strong.
Before I knew it 2-3 years had gone by and I just learned to live with the pain. Later diagnosed as Chronic Daily Headaches, but that still didn't give me the cause. So the the sleep issue hit big time; because I would wake up with headaches in the middle of the night etc. Which later I started getting anxious and uptight............well sleep deprivation sure can be a factor in that. I had gone to one of the PA's at our health care clinic, and was given trazadone (to help with sleep,small dose) and soma because the PA felt my tmj area was tight, and it did help for a while.
Five years later.............I seen another Doctor and had explained how many meds. I had tried and how my headaches were taking my life away. I was going to college at the time, and was desperate to get relief without feeling droggy etc... the medication suggested was fioricet/fiorinal. The next day when I took my first one I thought it was a miracle drug, and I could really get more done during the day etc....
Now that it has been six years of taking this medication; my Doctors are all telling me "this is too much" even after I explain that I can't take vicodin, darvocet etc....some of the other meds. I was given to try in the past. Which they did not touch my headaches at all just made me dizzy and felt sick. I know those meds. help alot of people.
I found out I have a rare disease called systemic mastocytosis (mast cell disease) which causes me to be sensitive to many meds. hives/swelling etc. many more symtoms with disease, but I wont get too carried away here.
I have had many blood tests to monitor my kidney's, liver, etc. due to my disease, and have never shown any problems in that area at all. I found out recently that systemic mastocytosis causes headaches (one of many symptoms) the Doctor who dx. me with bone marrow bx. even agreed that headache is one of the many symptoms, cns involvement
So........I guess my question is if I am finally dx. with lab reports,bx, etc. and am being treated for a rare disease w/severe headaches why all of a sudden is everyone at my HMO suddenly acting like I have no dx. which requires pain medication along with my other medication?????? my primary is trying to convince me I am an addict, and to take prozac (which I stopped) because for me I wasn't depressed, and it made me a mean person. I know alot of people are helped with prozac, but in my case no way!!!!!
Does this make sinse at all?????????????? Do I just suffer??????? I have tried aromatherapy, I exercise when I have energy and not a severe headache, but now it's like I am being treated like I have asked for stronger and or different meds. and don't follow up with all of my other doctors or anything. I also see an ednocrinologist and a neurologist (who recently found out about my disease) he knows it is rare, and seems to be willing to work with me, but still it's like I suddenly feel like the Doctors are doing me a huge favor and really going out on a limb for me to help me with my debilitating headaches
I didn't ask for the disease. I am willing to try different therapies etc. and I try to stay as educated as possible, but come on................they say such an addictive drug................I say it has given me my life back!!!!!!!!!!!!!!!!!!!!!! It's like they are saying "give us the copay of $20.00" and we will start making you feel like a crazy addict because I take
fioricet. Addiction/tolerance......??????????????????????
I get through my days, and try to deal with my disease, but I find it hard to be labeled like this.
Any input would be appreciated!!!!!!!!!! I tried to keep this short
Thanks for any help or advice
take care, Kathy
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