Journal of Migraine Sufferers

Hello,my name is Denise and it is so wonderful to see a journal like this one.I hope I don't ramble and will try to be as concise as pos- sible.I have had severe chronic migranes since I was 10 yrs old.I've had them for 35 of the longest years possible. I have 3 types of mi- graines and a least two were present at any one given time. When all 3 would hit, I would beat my head against tile in the shower for hours.Nothing could stop the pain and the only reason I am still here today is because I asked the Lord into my heart when I was seven.The only thing I hung onto was Him, I had nothing else. I knew suicide was not an option even though the thought was there everyday. I went to every pain clinic,every doctor that thought he might help both here and in Canada.All I heard was what a horendous case I was. Doctors put me on steriods and I'd gain 50 to 80lbs.They didn't work- I had a fall off a race horse when I was 10 that started everything only no one realized that I had broken 3 discs and damaged my neck from it until 11yrs.later. Nerve damage had already been done but I had surgery anyway.I've been diagnosed with facets disease,had facet burns and radio-frequency main burns.Prolotherapy,etc.etc.etc.I won't bore you with all the meds I've tried including total herbal therapy. By last year I had deteriorated along with all my muscles to crawling on my hands and knees to get to the bathroom, could no longer bathe myself and needed nursing care I couldn't afford.The doctor I was using at the time only gave me enough morphine to last for 5 days a mo. worth of injections.Only then did I ever sleep.It was a living hell as I'm sure most of you can atest to.My head wouldn't even allow me to make full sentences muchless any sense. I didn't know where to go or what to do and then a friend of mine got her doctor here in town to see me.He is a pain management speclist who had only started seeing migraine patients 6mos.before.He was terrrified of me. Had never seen in his words,"anyone in so much agony with such a complicated history in his life".He admitted me into the hospital that day and relied on what I told him I needed to get my pain under any type of control.I think it was the Lord that made him trust me that I needed as much medication as I said I did.He told me later that he thought that amount of medication would kill me and he gave me his home #and called frequenty to make sure I was still breathing.He said he didn't sleep the whole time I was in the hospital because he was so scared.It's by the grace of God that he helped me.He started testing me for a Sycro- Med implant pump.He hadn't ever done an implant on anyone for migraines before and after all the testing was done he still was afraid the implant wouldn't work. It was a yr ago that I had the implant put in and I can't even believe that I now have some type of life that is worth living! The pump delievers Dilaudid(or it can use morphine,fentyl and a few other drugs)on an hourly basis con- tinually 24hrs a day. I still have pain but on a much lower scale and occasionally I have breakthrough pain which I take oral meds for. Not everyone is a canidate for the pump,but I bet alot of you with chronic severe back pain and along with many migraniners whose triggers are not stress or food,etc.are.If anyone would like to contact me about the pump or medications (I'm pretty much a walking PDR)or any other questions, if I can help in any way I would be thrilled to do so. Please forgive the length of this letter. It's hard to fit 35yrs. of suffering in a short paragragh! Each and every one of you whose story I've read are now on my prayer list. Bless you all! Denise pump or
Denise <>
Midland, Tx USA - Date: 08/31/98 (Mon) Time: 11:33:17 PM
Hello all. I have been following this site for several weeks, and find it very comforting to know there are others out there that understand just how bad a migraine can be. I have have had migraines for about 10 years - since a serious auto accident. You name it, I've tried it. All preventives known to mankind, most abortives (I'm allergic to many of them), physical therapy, massage therapy, biofeedback, accupuncture, herbal remedies, facet and trigger point injections, and even surgery. Right now I take verapamil, pamelor, inderal and depakote as preventives, along with ercaf and stadol ns as rescue meds and I still get headaches 3 - 4 times a week. One common theme I have noticed in many of the journal articles is how poorly migraine sufferers are treated in the ER. I work weekends in a trauma center, one that is liberated enough to treat headache patients with compassion while trying to provide pain relief. An ER that I worked in previously, simply treated all headache patients as drug seekers. The ER that I use when I have a bad headache, not the one I work in, has always been very kind to me when I have presented with a headache. Based upon personal and professional experience, I do have a suggestion to offer. I carry a "to whom it may concern" letter written on my neurologist's letterhead. The letter states that I have been a patient of his for nearly 8 years and have relatively intractable headaches. The letter outlines my current medications, what medications I am allergic to and what happens if I get them, along with what medications work best for me when I get a particularly severe headache. He updates the letter once a year or so. My neurologist takes his own call, and if I get a bad headache, often times he will just call in an order for stadol/vistaril. For those times that I can't reach my own doc, I give the letter to the ER doc. It prevents me from having to tell my entire history in between throwing up. If the doc has any questions, they can pull my chart. They'll see that I require a shot no more than 3 - 4 times a year, and that often my neurologist will simply call in an order. In the seven years I have used this particular ER, I have NEVER been treated as a drug seeker. In fact, on several occassions the ER doc was reluctant to let me go home because I was still suffering with a headache - I wanted to go home and try to sleep, they wanted to give me more medication. In order for this to work, you must have an excellent relationship with your neurologist egular doc and let him/her know immediately the next day that you have been in to the ER for treatment. And you absolutedly cannot abuse the letter or will be the last one you get, and you may well get labeled as drug seeking. But, if your doc is willing to try it, it can really smooth the way to pain relief in the ER. One more tip for your headache arsenals.
ally <>
mn USA - Date: 08/31/98 (Mon) Time: 10:54:06 PM
Hello Again! Well after 7 days of pain, I am having a "normal" day. I missed work (again) because I woke up in terrible pain. I called my chiropractor & was able to get an apointment. I got a massage (bless you, Teresa!) and an adjustment. When I told Doc that I had been treated at the ER recently (mind you the last ER visit was in OCT 97)he shook his head in disbelief. His exact comment was "I don't know about you. I usually have such good results with migraines." I was terribly offended by his comment because he is always so nice & understanding. It made me feel that the migraines are SOLELY My fault and that I am imagining the pain. Reading the journal I see that there are several of you who have had similar experiences with their doctors & clinics. Why are we treated any differently than any other person with pain? Is it simply because our heads are painful... do they think that the pain is "just in our heads"? At work, I see the contempt in my managers & supervisors eyes. They think that I am just doing this to not work. If only they had an inkling of what I go thru on a day to day basis they would not think so. My supervisor should understand because he too is a sufferer, albeit no to the same level that I am. *Sorry that I am venting* October 9th I go and see the Neuro again, letting him know about how well (Yeah Right) the medications I am on are working. I am going to ask him about several of the treatments that some of you are on. I have learned quite a lot from reading your words... Recently one of the ladies at my Mother's church recommended a "laying on of hands". I have some reservations to this. Not that I am against it per se. I know of an instance where a man with a tumor was healed by the power of prayer, but I just can't see it helping me. Perhaps I need to bolster my faith. THat is anohter issue all together. Here is a question for you all, anyone who cares to respong, please do so. Sometimes when I get the migraines, I feel that It would be better to die than suffer another day with the pain. Do any of you feel like that? I KNOW its a classic symptom of depression & I'm sure that I will address that with my DR. on the next visit. Thanks for listening. I hope you all have a good & Painfree day! Bright Blessings, Dianna
Dianna <>
New Port Richey, FL USA - Date: 08/31/98 (Mon) Time: 09:38:09 PM
Has anyone had any luck with the recommended 400 mg of riboflavin? I have about 10 headaches a month, and have tried numerous other things...
Lynn <>
Dallas, tx USA - Date: 08/31/98 (Mon) Time: 05:56:10 PM
Has anyone had any luck with the recommended 400 mg of riboflavin? I have about 10 headaches a month, and have tried numerous other things...
Lynn <>
Dallas, tx USA - Date: 08/31/98 (Mon) Time: 05:56:05 PM