I have just stumbled upon your page and was very excited to see that were many people out there with the same problems that I suffer from. I have to admit though that I feel very fortunate that I haven't experienced half as much as these poor folks have. I have had migraines since I was 17, at first I didn't know what the heck was going on. I went to my regular doctor he said, that I was under alot of pressure to graduate, I was working, and taking a night class, and that they would go away after I graduated. (Imagine that?!) Well lo and behold they didn't go away. I am 31 now and like most women when I was pregnant I was migraine free for 9 months. Needless to say I loved being pregnant! Although I didn't get a migraine immediately after delivery though, OY!! I couldn't imagine! Anyways, as with the rest of our "exclusive club" I have taken every pill thrown at me. And unfortunately I was addicted for two years. I'm not sure I even want to mention the drug, I don't want to scare anyone! I think I was pre-disposed to some sort of addiction due to family history. At about the time I conquered that lousy part of my life, Imitrex came out, and for me it has literally saved me! And I'm really saddend to see that it doesn't work for some people. I take both the injections and the pills. I haven't had to take any narcotics for 3 almost 4 years now. Albeit I still have migraines, but at least I can get rid of them quicker and with hardly no side effects. But the reason for writing is that I have stumbled onto to something different. For me I get migraines because of my period, for the guys out there it won't mean diddly, anyways, it was an article on "Menstrual Migraines", and the hormone therapy that they tested. The drugs they used were Danazol and lupronide acetate. I for one will take this article and shove it in the face of my doctor with a profound "Ah-HAH!" and "let's try it." I mean what have I got to lose? I have tried everything else, the catscans, the beta blockers, the diet changes, yadda yadda yadda. But there is one thing I can say, You know your body better than anyone else in the world and no doctor out there should argue otherwise, they may have gone to school and gotten the degrees and they KNOW alot, but they don't know you as well as you know yourself. I have had many doctors that look right through me and throw a presription my way, I have had very few that actually LISTEN to what I have to say, take control of your health and find a doctor that will take a moment and listen. I have said for YEARS AND YEARS that my migraines were linked with my period and hormones, and I bet this new study will prove me right. Anyways I will now get off my soap box and let you be the judge! Take care out there! If you want to email me, please be my guest.
I started having migraine headaches in my teen years. Approx. 3 to 5 a year, lasting anywhere from 6 - 12 hours at a time and were very debilitatating. I would be bed ridden with these blasted headaches. You know the scene: dark room and no external noise except the sound of my crying for 6 to 12 hours.
My mother who, Thank God, was an RN would give me "Private Duty" nursing throughout these headache episodes (cold alchohol rags across the forehead, feeding me, holding and rocking me like a baby, etc...). Sometimes the headaches would get so bad; my crying would turn to screaming and that's when I'd hear my Mom say to my Dad, "Bob, I'm giving her one of your migraine pills". (Yes, Dad suffered from clusters for years). I have no idea what this "migraine pill" was but, I figure it was something in the narcotic family and HEAVY DUTY (like morphine)!After taking my Dads infamous "migraine pill", I'd sleep for approx. 14 to 16 hours, wake up alittle hungover but, PAIN FREE and wondering when the next episode would hit.
Anyway, the migraines seemed to disappear in my 20's and most of my 30's. I did get some horrible headaches throughout my 20's and 30's but, nothing a couple of Excedrin wouldn't cure. Two years ago, at the age of 38, I had a complete hysterectomy and all hell broke lose in my head! My doctor thought the estrogen replacement might be causing the migraines so she lowered the dosages from 1.25 mgs. to .9 mgs. and now I take .625 mgs. per day but, my headaches are getting progressively worse so she doesn't think it's the estrogen.
My family doctors (two great guys) have worked with me for the past two years and have been wonderful. I've had so many blood tests and was sent for a CAT scan. All these tests come back fine. You're "as healthy as a horse, Eileen". I have injected, swallowed and shoved (suppositories) so much medicine into me over the past two years and nothing works. The only meds that have given me any type of short term relief (3-4 hours) are narcotics like Vicodin and Percocet. I know my doctors worry about addiction but, I think they'd rather see me pain free, even if it's short term, than suffer and we'll worry about the addiction part later. They have both been very understanding and patient with me and I am very grateful to them for that. But, since my headaches are getting progressively worse, my doctors suggested that I see a neurologist because they don't know what to do for me anymore.
So, off to the neurologist I go! Within an hour of a general neurological examination and discussing the "Family History", he tells me I have "Chronic Cluster Migraine Syndrome". "Chronic" because I experience these headaches every day and he does believe it's and inherited genetic disorder (my Dad, remember). The other thing he explained to me was that out of 100% of people, 90% of men suffer from this disorder and only 10% are women. Woop Di Doo! I'm one of the "lucky" 10%!
So, for the past 14 days, I've been taking Inderal and Decadron (steroid). Phenergan for the sick stomach. I also have Fiorinal and Compazine suppositories for the pain but, they don't touch the pain and make me feel like I'm having and "out of body experience". The neurologist told me my body has to adjust to these new meds. and to hang in there. (I'd stand on my head for 6 hours if he told me it would get rid of the headaches!)
During the past 14 days, I've had 5-6 PAIN FREE days, which is a miracle! But, the days I do have the headaches, they are more intense and debilitating. I will hang in there and be patient. I go back to see the neurologist next week.
Unfortunately, my whole family suffers along with me. When it's a "Pounder" day, my husband feels so out of control because there is nothing he can do for me and he's afraid I might "do away with myself" (probably because when I have a pounder I walk around saying "I wish I'd die!") My kids (daughter 15 and son 12) can't make any noise in the house because Mommy has another "Pounder"! But, through it all, my family has been wonderfully supportive. My daughter cooks dinner for the family on "Pounder" days, my son, helps out doing the dishwasher thing and cleaning the kitchen and my husband (after putting in a 12 hour day at work) oversees this whole operation and even does some laundry!
Anyway, Ronda, I am grateful to you for your web page. Not only is it informative but, I feel like I have a support system of people who understand the pain I suffer almost everyday of my life.
Thanks for listening!
---Eileen Meyerhoff email@example.com
---Samantha Crighton SC179@mdx.ac.uk
Don't have alot of time to write but will let you know that I have suffered for 11 years. Migraines no less than twice a week, sometimes every day for 5 or six days on end. Have had MRI - CATSCAN - you name it , I've had it. Have tried 15 to 20 different medications under a neurologists care for three years. If you have suffered long, YOU KNOW MORE THAN YOUR DOCTOR! IMITREX (Sumatriptan) WORKS!!!!!!! Tell Everyone you know. I am a 44 year old male. Hope this message reaches everyone.
You can E-mail me at firstname.lastname@example.org if you have any questions about different treatments that I've tried.
Hope this helps someone. You are not alone
I am 60 years old. My first headache came on when I was 20 - lying out in the sun at a pool with my 9-month-old son. I didn't know what hit me. My headaches were more frequent during my early years and very debilitating. I sought ansewaer from my doctor, only to hear him say he, too, gets the same kind of headache. When we moved from PA to MD, I got the same reponse from my doc in MD. However, our firt doctor in MD gave me a pill to take for a month to prevent the headahes. They worked, but I have no idea what I took.
I studied myself to try to determine the cause of these headaches. As far as I was concerned, I had never experiened anything so painful, and I didn't care if I would fall asleep and not wake up. I had the urge to bang my head against the wall.
As I got older, the headaches would come between a span of 5-6 years. They would last for a couple weeks, until my last bout, 7 years ago, the day before a great hurricane arrived (September was the month), the year may have been 1989. The headaches lasted about seven weeks, and I had one just about every day. I lived in fear of 10:00 p.m., as the headaches would come shortly after 10 o'clock, almost every evening. I lost about 10 pounds, simply because I was avoiding so many foods, felt hung over the next day, and was exhausted. I was working in an elementary school which was extremely busy (I didn't even take lunch breaks) and the first ten days of my headach had to work alone in the office because the other secretary was on a cruise. I was a principal's secretary.
My headaches started around 10 and lasted 'til around 3:30 a.m. I lived in fear. The doctor gave me Inderol and Fiorinal. I did not take the Inderol beause the school nurse alarmed me over taking this medicine. The Fiorinal did not work. I would just take Advil. Due to the length of time of my headaches, I feel only time takes care of them. The only thing I could do was go to a dark room, lie still, pray that I could fall asleep (I rarely could) and wait for the headache to leave. I became one irritable, unhappy person. These are my symptoms:
A slight pain starting in my nostril (right) leading to my eye, into my temple, and encompassing the whole right side of my head; always the right side of my face.
Never more warning than seconds of the pain starting in my nostril. It became a full-blown headache immediately.
Could not tolerate light, noise, and would just lie down in a quiet, dark room. Rarely fell asleep; remained in a stupor-like condition until the headache subsided.
Important factors about my headaches were discovered during the course of my 35 years of pain:
Alcohol will bring on a headache immediately when I am in a phase of my life that I am having them.
I have been at Chinese restaurants and had to leave because a headache came on. MSG?
A headache once came on New Year's Eve - had alcohol, cheese, garlic, and numerous other foods considered to trigger headaches. I have learned to avoid these things. However, I don't know what causes the cycle - cycle meaning every so many years when they would come on. They always lasted a certain length of time, went away, and didn't come back for several years. Why? Noone ever explained this to me. I really do not believe we have any control over when we get them, once the cycle starts. Not having one for a few days might indicate they have gone for good, until they reappear several years later, in my case.
My last siege of headaches were the worst....meaning, the 7 weeks or more that I had them - as I recall daily.
I am completely through menopause, although I still get hot flashes on occasion. I have read that sometimes the headaches will not return once we complete menopause. I'm hoping.
Contributing factors - STRESS - I don't think so. This past year has been the most stressful time of my whole life. Other than feeling depressed, I have remained headache free. The only other time of my life I regard as very stressful would be 1983, '84 and '85, at which time my Mother got cancer, passed away in '84, and my Dad in '85. I went into a depression then, but never got headaches.
I, personally, feel allergies might play a part in our headaches, and, by the way, my headaches have been diagnosed as CLUSTER.
I have great empathy for all of us out there with these headaches. The pain in my EYE feels as though someone is putting a sharp instrument through the middle of the eye. It continually weeps as I am experiencing the headache, and it just wants to shut. It feels sore afterwards.
I'm writting all this as though I'm never going to get another headache. I still remember my fear at the first inkling of pain. My heart goes out to the children who wrote to Ronda. It would be intereting to have a group of headache sufferers together to see if there any other things in our lives that are similar; e.g., allergies, personalities, illnesses. For example, my face breaks out periodically, and has for about the same number of years and my headaches. I get a cream from the dermatologist, but I never have been able to figure out what causes it. I think when I cut grass, I think when I'm digging in dirt, but I used to blame it on nerves. I really don't know for sure.---Pat email@example.com
PS - I once was told that noone ever died of a headache; therefore, noone is spending a whole lot of time on a cure.
First of all, I would like to tell you how thankful I am to have found that I am not alone in my suffering. I have had migraines all my life, starting at age 8. My parents took me to our family doctor, and he said I was just a nervous child. They gave me valium to take every so often. When I reached my early teens, the headaches came only when I had my period. when they came, I learned to head them off with Anacins for the pain and Pepto Bismal for the nausea and vomiting. When I reached my mid twenties, I developed an ulcer and no longer could take the Anacins. I was stuck, because Tylenol does nothing for me.
Being a cosmetologist at the time, it was hard to be upbeat and get through the day - especially with the different odors involved in doing hair, perms, colors, and artificial nails.
When I hit my late 20's, early 30's I had to quit my career as a cosmetologist. People try to tell me now that my headaches are caused from stress, but I disagree. I am self employed now, I have a company that writes and produces radio jingles. When my headaches hit, I can stay home, but a business folds up if you are home all the time instead of being out there selling. Doctors have given me so many different things to take over the last 5 years.
First they gave me Fiorinal with Codiene. I got addicted to that big time. The withdrawl headaches were nasty and I overcame those with Imitrex, which I still take whenever I get my headaches. I was on Darveset, Inderall, Amatriptalene,(which caused me to gain 50 lbs practically over night.) Compazine, (I had terrible panic attacks from this) plus others that I cannot think of now. I had CAT scans EEG's, MRI's, all normal.
I went to a specialist in Madison WI. Everything he gave me caused me to be violently ill, especially Sansert.
I guess you could say that I have a bad attitude towards doctors now. I have gone to the emergency room so many times for Demerall, Turadol, and other injections. I have been so over medicated that I had become depressed. I felt like a hyochondriac, and felt that the medical staff treated me as such. I do not have a problem with depression. The last straw for me, was when a nuerologist prescribed me to take Prozac. He also told me about Depacote, and said that the side affects of depocote were weight gain, and hair loss. No thanks.
Since the medical doctors were not helping me, I have found what I believe to be the answers on my own. I started seeing a Hollistic doctor. They heal through natural ways, through vitamins and herbs. I have changed my eating habits, and take alot of vitamins. I am off all medication, except the pill. Last week was that time of the month and I only had one headache. I got rid of it with 3 Feverfew, (an herb that thins the blood) and a cup of tea. My ulcer was healed with cayenne pepper and lemon juice. ( I know that sounds crazy) I eat very healthy now, and van honestly say I have not felt this good for years. Now I have more energy and my mind is much clearer. I used to eat alot of pizza, now I'm into stir fry. I have found that I was allergic to alot of the food I was putting into my body. Peanuts, Peanut butter, (now I eat almond butter , yum) refined sugar, refined flour, all dairy, bananas, canned foods, Nutra Sweet, MSG a biggy.
Usually when I have my period I have a headache everyday for a week, acompanied with blurred vision, auras, and vomiting. I think for me, I have found the answer. The Irodologist I saw said that my bowel was full of toxins and that I had to detoxify my system. It does make sense. Our colon is like our own sewer system. If the sewer system gets backed up, we have alot of bacteria problems. Same for our bodies. If things are not moving along properly, things get backed up and get tranfered to other parts of our body and make us sick. for me the result mixed with hormonal changes, was migraine. I will change my life and take two handfuls of vitamins (something our body needs anyway, not chemicals) as long as I can live my life as a healthful 31 year old . I will get to the bottom of this, and find more answers. Anything worth doing is never easy. To all of you Migraine sufferers, don't lose heart. We will find the anwers.
After dealing with headaches for at least 10 years (since high school), I have finally gotten to the point where I can manage them effectively. I am certainly not cured, and never will be. But little by little I've built up my own arsenal of "maintenace therapies" that I have to stick to dilligently. I still occasionally get headaches, but the quality of my life has improved a thousand fold in the past year or so. Maybe some of my techniques will help someone else: