As a teenager I suffered migraine without the aura and had to have at least a cuple of days a month off school. I was given ergodryl capsules to use when the migraine developed and maxalon for the vomiting. The headache always was accompanied by vomiting or nausea, sensitivity to light and noise and the next day I felt like I'd been run over by a truck. In ny early 30's my migraines became worse and I went to a neurologist and was put on Inderal 40mg x 4 times a day. this did not help I was just tired all the time. the migraines seemed to go in phases and at about 33 they settled down and I went on with my life.
Around the time i turned 35 they came back with a vengenance. This time with auras and the tingling fingers, face and hands. Someimes I would not be able to feel my hands for 20 minutes or so and experienced periods of mental confusion. the squiggly lines would come and I would not be able to see form that eye. then the headache and nausea would hit, the majority of my headaches are on the right hand side above the temple and ususally if I get an aura Iknow i am in for a really bad headache. i still continue to get headaches without the aura as well. I went to a pain clinic and was assessed by a psychologist, psychiatrist, physiotherapist and a doctor specializing in chronic pain. I was told your normal mentallly, (which I already knew) its inherited, cut down on the narcotics and live with it.
I went home depressed and got on the alternative trail. I tried chiropractors, naturapaths, gave up cola drinks, gave up all alcohol, went off the pill, didn't eat chocolate, oranges, cheese, went to bed and rose at the same time every day. Avoided long journeys, ate at regular intervals, had acupuncture, had counseling, gave up going out, dragged myself out to exercise and went on Sandomigrain. tried herbal teas, went back to my doctor and tried, Clorodine, Zoloft, aspririn in high doses and Inderal again.
All this to no avail. I was always hearing from the doctors if I had to go to outpatients about how addictive pethedine was and why hadn't I tried preventative measures. When you have ben in pain for several days and dragged yourself to work because you support yourself and live alone, the last thing you need from medical staff is a lecture of why don't you help yourself. The migraines have got progressiviely worse in the last two years and I have been hospitalized on several occasions for 3-4 days and kept on pethedine or morphine every 6 hours in an attempt to relieve the pain. I once had a headache for 12 straight days. I was released from hospital and had to let the migraine run its' course.
At the moment I am on 1mg Deseril 4 times a day. The severity of the migraines has decreased to a certain extent but I am still experiencing 2 migraines a week. The Imigran is letting me continue to work but some weeks it is all I can do to go to work and fall into bed when I get home. I have gone back on the pill after taking a break for 8 months after being told it possibly was the cause. being on or off the pill has made no difference to me at all.
I am desperate to find a solution that will at least help me decrease the severity or frequency of the headaches. If anyone has suggestions it would be gratefully acccepted.
I stumbled across your journal in the midst of search for some kind of relief. For the past couple of years, the headaches seem to come more frequently in mid to late summer and now that it's August, it's migraine season again. I am a student and I can't afford to lose time like this (about 4 days out of every 10). I'm not really sure long I have suffered from migraines. The more I read, the more I think that perhaps I've had them since adolescence (I'm now 44). I've pretty much given up on the medical profession. More ineffective, expensive prescriptions are not the answer. My own history is rather bizarre. At the age of 12, I began having grand mal seizures and 18 years of EEGs and brain scans never showed any physical cause. Then, around age 23, I started having attacks of extreme vertigo. It was like the world's horizontal hold had ceased to function. The seizures stopped by the time I was 30, the vertigo (which some doctor identified as Menieres Syndrome) stopped around the same time. The headaches, as far as I can recall, began about 6 years ago. What I find interesting is that all three of these conditions have one thing in common: they all interfere with cognitive function. I'm beginning to believe that your body has the capability to shut you down whenever it senses that rest is needed. I think that's why the drugs don't work. That is a very simplistic way to put it, I'm sure it's much more complicated than that. I haven't talked to my doctor about this, but I have spoken with one of my profs. He wasn't sure what to think, but he didn't discount it (which I'm sure the medical profession would do). Anyway, I'd be happy to hear from anyone else who has experienced similar disruptions throughout their lives.
---Heather Kelly email@example.com
On July 14th, the Governor of the State of Ohio signed a new law known, generally, as the "Relief of Intractable Pain Act." Under the provisions of this act, Doctors are relieved of the limitations normally placed on them for prescribing large amounts of analgesics (including narcotic analgesics) to people who suffer from "intractable pain" and for whom no "cure" exists. The act goes into effect on October 14th and, in the interim, the State Medical Board is writing regulations to assist Doctors in understanding how the law works. I have spoken at length with the Medical Board staffer, and it appears that migraine is one of the conditions that are covered by the act.
Under the provisions of the new law, the doctor has to get a confirming diagnosis from an expert in the field (e.g., a neurologist) and must keep the types of records that a doctor would ordinarily keep concerning examinations, test results, etc. If the doctor follows these rules and if the doctor believes that the patient has "intractable pain" (that is pain that can not be "cured") the doctor is permitted to prescribe essentially unlimited amounts of pain killers (other than a lethal dose) without fear of risk to his/her license for over-prescribing pain medication. In my own case, for example, my doctor has already agreed (and has a confirming opinion in his records) to prescribe injectible demerol with vistoril (the analgesic combination that works best on my headaches) for me to administer to myself at home. That means, for me, no more midnight trips to the ER with hour long waits and anxiety over whether the ER physician will treat me (or act like I was a criminal, instead).
It is my understanding that Louisiana has a similar statute and that many states have similar laws for terminal patients. Anyone who wants additional information about Ohio's law (perhaps to help get a similar law passed in his or her home state) should feel free to contact me. ---Larry firstname.lastname@example.org
I am 21, will be 22 in two months. I have always suffered from headaches that was never abated by normal meds, like Tylenol or Excedrin or Advil for as long as I can remember. My sophomore year in college, when I was 19, I was at work (a desk receptionist at one of the residence halls) and studying for an organic chemistry test the following day (I have since graduated with Honors with a degree in biology and starting graduate school in the fall to pursue a doctorate in biology). I was hit with this enormous amount of pain on my left side, the lights above my head suddenly got very bright and hurt my eyes to even have them open. When people walked by, their voices seemed to be hitting decibels that hurt my ears. Not to mentioned the looks I was getting since I was cowering from the lights and noises and doubled over in pain and nausea. About an hour later, I found myself in my bathroom in my dorm room, head bent over the toilet. I had never felt so much pain. I felt as though someone was driving a knife through my head. I laid on the floor of my room until the following morning, when I went to take the test. I told my prof what had happened, but he had no sympathy.
Three weeks after that night, I was still in pain. During those 21 days, I had not had any relief from the pain. I was dealing with this headache every day, all day. I finally relented to my now-fiance, then-boyfriend, Scott, to go to the doctor. I found a neurologist in the area (since I was away from home) and went to him. I sat in the waiting room for an hour and a half under bright lights and next to loud, crying children. By the time I was in his office, I was in so much pain. Amazingly, the doctor told me I was suffering from a migraine headache and prescribed some medication (I have since been prescribed 30 different medications, so I honestly do not remember which one it was that he prescribed.
Needless to say, it did not work whatever it was. I had been talking to my parents during this time, and they kept trying to get me to come home and we would see our local doctor. My father was in the Navy for 23 years, so it would have been the navy hospital that I would have gone to and when they misdiagnosed an earlier knee injury that landed me on an operating table 6 months later due to their wrong diagnosis, I have been weary of them since... I was not interested in seeing them.
One day, about 2 months later, still in the daily pain, I ran out of the dorm's cafeteria to the bathroom to throw up again, Scott ended up calling my father and my parents came to get me and brought me to the ER. I was given a shot of Dermerol and sent home. Again, the pain had not subsided and by this time, it had been almost three months and I was in agony everyday.
After school ended for the semester, I went to see a neurologist at home. I went to this doctor 3 times before I realized that he was more interested in getting answers about my pain from my mother who accompanied me. I figured that there was no way that he could treat the pain I was in by asking my mother questions about my migraines rather than me, the patient, me the one who was in pain.
A month later, my mother read an article in the paper about migraines and neurologists that have been noted for helping a number of people get through the pain and onto a pain-free life. So, I made an appointment. Now, about two years later, I am still under the care of this neurologists. He specializes in migraines and he listens to me and not my mother and he actually understands where I am coming from to the best of his ability, as he cannot actually feel the pain that I have. He has been extremely helpful, although, unfortunately, he does not know why they started so suddenly or why they are daily (well, technically, they have not stopped since that first one, so I do not know if daily is the right word, but it will have to suffice -- I have a migraine all day long, with the intensity ranging from about a 3 on a scale from 1 to 10, and escalating to about a 9 or 10 by the middle of the afternoon).
Now, 2 years later, I have had a spinal tap, an MRI, a CT scan, been through 30 different meds from depakote to Imitrex tablets to the shots to phenetermine (the diet pill "phen") in combination with two other meds and so many in between I can no longer remember the names of them. Chances are, whatever med anyone can name, I have taken it. Some cause the pain to increase, some caused such drowsiness, some cause tingling in my fingertips, some cause nausea worse then what accompanies migraines, and the list can go on. Currently, I am taking methadone.
My fiance has been wonderful through it all. I have lost friends over this because they cannot understand the pain that I am in and do not think that I can be in pain all day long everyday. Most of the time, they think I am using it as an excuse not to do something or go somewhere. Now I ask you who suffer like I do -- why the hell would I make up this pain to get out of going to something fun, like a club, or a party or to the movies or just out to dinner with friends? believe me, if I did not want to attend, the last thing that I would do is pretend to suffer from this amount of pain. Pain that will keep me from classes sometimes, or causes me to sleep the day away in order to avoid being conscious to feel the pain.
I have given up things like caffeine and large amounts of sugar. I cannot go anywhere with lots of noises or lights or anywhere that there might be people smoking. Now, as a college student, that about limited every place that was considered to be fun and "cool." I have not lived my life for the last two years without the constant reminder that I am limited in one very significant way -- I am a migraine suffer, and like the journal entry I read today, I believe that people who suffer from migraines are disabled in some way.
I am a major control freak, and migraines do not lend themselves well to people like me. The only thing that keeps me going every morning when I wake up is the fact that I will NOT, I repeat NOT, let these migraines get the best of me.
I am tired of people looking at me like I am faking this, or trying to get out of work or like I am a freak of nature. I am no longer the person I was two and a half years ago and I honestly do not like the person that I have become. I will not let this thing beat me and it does not help to hear things like "you have a migraine, isn't that just a headache?" Or "why don't you just take some Tylenol and get back to work?" I know that these people do not understand the pain and the intricacies of migraines, but I wish that they would not say things that make me feel, in the inner most part of my self-confidence, that maybe I am making this all up. What sick and twisted individual could do that to people like me? Unfortunately, far too many.
fortunately, I have a wonderful fiance, supporting parents, a truly understanding sister and a few close friends that help me make it through one day at a time. I finished college when my DR didn't think I would with the amount of pain I am constantly in. My DR was extremely proud of me when I finished school and is happy to hear that I am not done with the education yet -- I plan to finish my schooling with a PhD in biology and I will not give up without it in hand.
I would love to hear from others like me and how you are getting through the days. I know that there are days when I question everything -- from why do I get up in the morning when I know I'll be in pain all day to the unfailing love and support from Scott and my family. I know it has it be hard for them to see me like this.
I am also seeing a therapist to help me find a way to cope with the pain and how it affects my life. She once told me that she often wondered if migraine sufferers (who are 98% of her clientele) would receive more empathy and understanding from friends, co-workers, bosses and family if we were to wrap gauze around our heads or a band-aid or something to give some sort of reminder of the pain we are in. We offer empathy to those with casts and the like, because we can physically see the source of the pain. What if we were to wear something that would be a physical reminder of the pain... Just a thought she has shared with me.
As I conclude what has turned out to be a very long entry, and I do apologize for the length, I want to let you all know that reading some of the entries on Ronda's page has give me a little hope that there are others who are as in much pain as I am. I hope that I can help someone by sending this, like the help I can now seek in this web page.
Please feel free to write me at 3LU7COLTONS@vms.csd.mu.edu
Thank you so much for creating an area for people who are cursed with this thing called "migraine" to share their story. It's comforting to know that I am not in this battle alone.
I, too, have been "blessed" with migraines for 15+ years. I share the same frustrations with the migraine victims that are battling with the medical profession for migraine pain relief.
When I had my first migraine some 15 years ago I did not know what hit me. I knew my mother use to have "sick headaches" and her mother (my grandmother) had "sick headaches" as well. My first attack scared me so bad that I sought immediate medical attention to find out what was going on. I thought brain tumor, etc.... With pain that severe it's easy to think the worst. My physician, since birth, suggested that I probably inherited migraines from my mother who was under his treatment as well.
A suggestion was not good enough for me. I immediately went to Scott and White in Temple, Texas, who are known for their diagnostic abilities. I admitted myself to their care for an entire week of poking, proding, testing, etc... Due to my reaction to an "electro something or nother" he scheduled me for an emergency scan because the prior test reflected some sort of abnormality on the right side of by brain (where my pain seems to be concentrated). I was scared to death. However, the scan should no tumors or nothing out of the ordinary. The chief neurologist diagnosed "migraine". I was elated but disappointed. I was elated not to have a tumor but disappointed that there was not a situation that offered a quick fix.
Upon dismissal I was put on one regimen after another. Nothing seemed to help. After one nightmare in the emergency room when the physician kept pumping me with Demoral (which made me violently ill) and would pump me with Phenergan in an attempt to control the nausea. After that night I was determined to find a cure. I went to eye doctors, dental surgeons, ent specialist, allergiest...the whole medical sphere--all was in vane. Finally, I heard about a migraine specialist in Houston who flew part of his staff to Dallas to see migraine sufferers here. My first visit with him put me in a Houston hospital under his care for 1 full week. He, too, confirmed "migraine".
In this 15+ year fight with migraines, it took one trip to a small neighborhood clinic one evening to find a physician that was not only understanding but very helpful. Her own husband suffered with migraines and said that he had best luck with Nubain and Phenergan. That one shot eased the migraine pain. It did not rid it totally but enough to take the edge off the pain were I could cope with it. It allowed me enough relief that I could sleep the migraine away.
HOWEVER, regardless of 15+ years experience with numerous medications and complete effectiveness, physicians do frown on a patient requesting a specific medication. Your other authors are right, you can easily be labled a "drug seeker".
You would think with their own medical documentation and test result reflecting migraine that they would be more receptive. I understood that physicians take a vow of "Physician do no harm". Well, in my opinion, when they deny treatment or limit treatment they inflict an addition infliction on their patients.
Well, now that I have just totally exploded, I would like to thank you again for creating communication line for those in need. It is really appreciated.
For those who are watching for specific triggers, you might suggest for them to watch out for Yellow Dye #5. It is in alot of products. It is listed to be one of the main migraine triggers in alot of tested candidates. It will trigger a migraine for me within 15 minutes from consumption. I try my best to avoid this dye even in cosmetics, shampoos, etc... Maybe it's avoidance will help others. I hope so!
I'm 34 and have suffered from Migraines since I was 16. Luckily, perhaps, I have migraines without the severe pain or aura that many of you have. I have, however extreme coordination problems, concentraion problems, excessive irritability, nausea and all the other "usual" problems sometimes to an extreme. (Once, my right leg curled into fetal position after a bad one - I couldn't walk for 2 days!) I managed to get my headaches under very, very good control to the point when they did not really affect my life to any great extent. And I rarely needed the Midrin. There is hope of control!
During my first 2 pregnancies (both boys)my headaches ceased all together after the first trimester. And were very minor inconveniences afterward. I've been told this is true for most women even if your migraines are hormonally linked.
Then my third pregnancy - wow! I knew she had to be a girl! Had to be all the extra hormones. Several of you have asked about a hormonal link ... you bet. My youngest is now 11 months old. I now have had "status migraine" for 20 months - nearly half of my poor 3 year olds life! I'm short tempered, tired, and down. Hard for kids esp my 3 and 5 yr old. (Hard for me, too)
Vicodin helped during pregnancy and while nursing- took the edge off so I could function. It's safe during pregnancy, esp since Tylenol 3 made me more nauseous.
I finally weaned her so I could take drugs to GET RID of this headache.
I finally got relief ! on 80mg Corgard a day for 2 months, Midrin 4 times a day for 10 days, Prednisone for 7 days (tapering doses)
Saddly my relief ended 4 days later.
We are now trying Calan SR 120mg twice daily, 80 mg Corgard (pm), Methylprednisone (tapering doses), Midrin with onset (didn't work), Vicodin with headache
Here's hoping it works. A headache day in and day out is exhausting. My husband is afraid to look in my eyes anymore. It is so very stressful for the entire family, as many of you know.
Anyone else with "comlicated migraines" or "status migraines" that have found relief?
Any that began with pregnancy? I'm hoping my hormones will just get back in wack and fix this problem. My kids need their mom back.
feel free to e-mail me at email@example.com. I'd love to have someone to chat with that "understands" I hope the book helps many - it has helped me immensely