On-Line Migraine Journal

The on-line migraine journal is intended to be an area for migraine sufferers to post their migraine histories and experiences.

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Hello out there!

This is the first time I have been on here, and once I read some of your stories, I knew I had to add mine as well.

I am 30 years old, and have been having on and off (mostly ON) severe headaches for at least 12 or 13 years now. I have a lot of the symptoms of a migraine, with the lights being too bright, or the noises around me being too loud. I have learned to live with most of them, but I am getting frustrated as to finding something that will really get rid of these brain killers. I sometimes have three or four headaches a week, or maybe it is the same headache, I am not sure sometimes. I have also read that most migraines occur on one side of the head or the other, and I have those sometimes, where I feel like my eye is going to pop out, but most of my headaches are all over my head, and even my face hurts a little sometimes. I have all the symptoms of migraines, like nausea, and dizziness, and sensitivity to light and noise, but I am puzzled as to why I have most headaches all over my head, not just one side. I know that some of my headaches are tension related, and I am also affected by changes in the weather as well. I also have a great deal of trouble sleeping, mostly because I get numbness and tingling in my arms and legs, mostly in my hands, and I can't lie still to save my life! It is a rare thing for me to go an entire week without a headache, and they are usually so unpredictable!!! Occasionally I can tell that one is about to start, where I get suddenly tired and my eyes get blurry, and the light gets too bright, and abour 30 minutes or so the killing pain starts, mostly all over my head, with the intense pain being in my forehead. But most of my headaches start in the blink of an eye, sometimes when I bend over, or stand up too fast, and one time my headache started when someone passed by me in the mall and accidentally yelled in my ear! This was at exactly 6:17 pm, on a Saturday in the summer two years ago, and all I remember besides the exact time it started, is that it then lasted for four or five days, and I was SO relieved it was finally over! I am writing my experiences and symptoms in as much detail as I can, in case someone out there reads this and has the same problems as I do, then maybe they can e-mail me about what they do to find relief for their pain. I am looking for any kind of relief!!! It is hard to live a normal life and focus on a normal kind of future when you can't do more than live day to day and pray for the hell to end. I work a part time job now, which is going all right, but it is hard to get through the day sometimes. I am currently taking Amytryptiline, 25mgs a day, and Duradrin for the pain. So far the Duradrin helps somewhat, by dulling the pain and the sensitivity, and I am not sure about the Amytriptiline yet because I have been only taking them for a month. I would appreciate any responses or advice that anyone wishes to offer, and even if I never get any, then I feel a lot better just to type all this out and have other people read it, also to know that there are other people who understand what the average migraine hell is.

Thank you for reading this!
Caroline.

caroline <zebthekingcat@hotmail.com>
Wednesday, July 11, 2001 at 22:38:35



I have suffered from migraines for 15 years everyday. My migraines center in my left eyebrow right in the corner. Finally my doc's have found the miracle drugs for me. Cafergot, I only take them when I have a migraine coming on, along with a daily dose of verapamil. So far so good! Has anyone heard of or had the surgery were they cut the nerves in the eyebrow to stop migraines in that area. Please let me know if you have.

Peg <pcsl4@hotmail.com>
Wednesday, July 11, 2001 at 18:36:36



I have been a headache migraine sufferer all my life. Lately, they have been reduced because I have found one of the triggers for my headaches: GUAR GUM! Also, anything that is similar like carob bean gum, cellulose gum, and locust bean gum. Watch for these labels to elliminate these from your diet and see if this helps you at all.

ejones <eljones95316@yahoo.com>
Tuesday, July 10, 2001 at 11:54:16



Hello All,
Hope my story helps some of you. I'm 43 and have had migranes
since age 10. The first one seemed to be caused by eating raw
coconut. As the years have passed I learned what I believe triggers my migranes. These are the wearse culpretes. Alcohol, any sourdough(fermented) type products, mushrooms, artifical sweateners, chinese food, diesal exhaust, any chemical fumes such as perfume, hairspray, skin lotion, paint and thinners. Rapid changing weather conditions.
While this seems like alot many of the causes seem to affect me after a "saturation" point is reached. For example tacos 2 times a week may be okay...but three is a no-go. As with all you we have to live with this and hope we never get the "S" headache.
As for medication I use Midrin..probably too much..and on wearse days Synalgos to keep the pain bearable. I have been through many drugs and these are the only ones that offer some releaf. I also found in a pinch I could eat 3 or 4 huge Norwich asprin and drink a coke which helps.
Kevin

Kevin L. Best <kalmon3@home.com>
Tuesday, July 10, 2001 at 09:59:02



Hello, I wanted to say that I have just discovered a cervical disc problem in my neck. I am in Physical Therapy, but it is not helping. It actually triggered a terrible Migraine series and I am now not doing the therapy anymore. I am having an EMG done tomorrow, which hopefully will show what is going on. I was wondering if anyone out there has had Migraines due to Spinal problems and what is the ultimate cure? Thanks so much and I appreciate everyone's input on this board. We can fight this!

Melanie Morgan <Martsycat@aol.com>
Monday, July 9, 2001 at 19:35:29



This is my first post. I am a 31 year old male. I have experienced classic migraine since I was 14. My migraines disappeared for over 5 years but have recently re-appeared. I can manage the pain with painkillers but REALLY suffer from the aura and blindness. I have found that 90% of my migraines occur when I play sports or do any other kind of stressful physical activity. I am very fit and healthy and play basketball 4 times a week. Lately I have got a migraine EVERY time I play. It starts with the little flickerings in the corner of usually my left eye, and then I take a dose of Advil (3 pills) and head home where I have to stay under the covers in complete silence and dark for an hour or two until the blindness is over. Basically migraine is preventing me from playing sports right now. Does anyone else have a similar trigger.

I have read that a new source of thinking is the disturbance or shock to the brain stem. Basketball seems like a really good root for kneck and upper back shock (rebounding, jumping etc.). Anyway, I refuse to stop doing what I love and will try to face this ailment.

Thanks for listening.

Martin

Martin Folb <martin_folb@puresolv.com>
Monday, July 9, 2001 at 18:56:32



Hi! I was doing some research on migraines and happened to come across this site. I have basically had it. I have had migraines for 9 years now. I am 29 years old with 3 children. I think my migraines started after I had my first child. I suffered a severe migraine a couple days ago and went to the hospital to receive demerol. After spending the day in bed, missing a family vacation and my daughter was sick with the flu so I wasn't even able to take care of her, I am so tired of dealing with this. The next day I was so terrified that it would come back I didn't open my blinds and I barely moved that day. I have seen lots of doctors and all they do is right a prescription, which never works. I currently take zomig. The majority of the time it works but my life has been under some stress lately and the zomig doesn't seem to help anymore. Where do I go next? I am young and feel very old.

Kristi <kjackson1172@msn.com>
Sunday, July 8, 2001 at 21:37:20



Dear Friends
only you, other sufferers can understand what it is like to
live with this type of pain. I am 35 years of age.
I know what its like to have pain so bad that one would almost just want to give up. I also know that when the pain subsides that the world can be a beautiful place.
I have had migraines since I can remember, usually once or twice a week. Ive tried pills , cold compresses, darkness
silence and prayer. Few poeple know about my migraines other than my family. No one can really comprehend.
EXCEPT YOU, would love to hear your remedies. take care.

MICHELE <COOLCOOKI@AOL.COM>
Wednesday, July 4, 2001 at 14:38:20



Hi. I haven't posted for a year or two, but would very much like to share some very exciting news. I haven't searched the archives to see if others have found this helpful, so apologies if it is not new.

I have suffered from CLUSTER HEADACHES for about 30 years.
So, my discoveries may, or may not apply to those with standard MIGRAINE.

I have tried many things: and, yes, Immigran works after the pain has started, and some drugs such as Ibuprofen do diminish the pain. However, these are useful in pain reduction rather than stopping the attack, and the residual pain and tenderness is still very uncomfortable and debilitating.

Three things have helped me:

First: taking a dose of Melatonin (before bed/sleep, will not work during the day) has been very effective in some years, and still seems to prevent an attack at night. You need to adjust the dose for your personal metabolism. Others I have asked to try have had everything from fantastic results to very little effect.

Second: taking feverfew, (NOT as a drug/tablet) as three leaves picked off a plant daily (very easy to grow) also really stopped the headaches this year: but !! as soon as I ran out, the cluster started.

Third: (and most exciting) is oxygen.
I have had a prescription made out for medical oxygen, and I keep a cylinder and mask with regulator at hand! At the first signs (if at night, I just usually wake up with a "premonition") or at the first sign of impending doom, you breathe in the oxygen at a rate of 2 LITRES (LITERS) per minute (as per the regulator).
I do this for, say, 10 minutes, and it will, almost invariably, completely abort the headache, and best still, there is no painful hours that follow if you use a drug after the attack has set in.

I would be happy to discuss this by email, but more importantly, PLEASE try and let me know what results you obtained.

Your doctor may be quite sceptical, and not have heard of it, but insist that you try. Firstly, oxygen is a lot less serious than many of the high level drugs you are probably using, and far less invasive. Secondly, unless you have a very enlightened MD, very few know much more than what the drug companies advise.

Good Luck!!

gary <tigga@zip.com.au>
Wednesday, July 4, 2001 at 09:30:58



I thought I was bad until I read your messages.....
I have suffered classic migrane since I was 20. Im now 29 years old and still suffering. This week I have had a migraine everyday. They are short fast and disabiling. I have a warning which enables me to get the tablets down me, find a dark room and wait for the fireworks. The strange thing is the colours and flashes and lights I see are simply beautiful, its a real rollercoaster. Unfortunately I think my job - graphic design doesn't help me..Stress I feel is a major trigger as is my luxuries wine and chocolate. Without these Life is not worth living. My story doesnt help much, but it is good to know people understand me.

Helen <sales@leeds.prontaprint.com>
Wednesday, July 4, 2001 at 05:47:25



Hello to my fellow migraine family

I have not posted an entry in awhile since the past couple of months my headaches have been reduced from daily to one or two a week. I have had chronic headaches for over half of my life; being 29 now. I do not remember life without headaches and have a ten year old son who does not know what it is like either. When mom says she has a headaches the noise level in my house automatically goes down. Last week my son had a friend say the night on a day I got a headache and I could see that he (the friend) did not know what life with a migraine sufferer was like because when the headache was announced he did not know to take the noise level down to a whisper; which made me realize even more how my son's life is different from "normal" kids. I currently take daily 80mg Prozac (this is past a depression level but at a migraine level): 1000mg Tegretol: 40mg Corgard. I also take the herb Feverfew daily in a hope that that will help. For pain I have Imitrex pills (which make me fall asleep): Imitrex nasal (which I use at for work) and Vicodin ES. I know I cannot take to much of any of these or a will get a rebound and have laid in bed many times with only a cool washcloth on my head. The reason I think my headaches are less or do not last as long since one headache was more like days then hours is due to Lidocaine. I was reading in Self Magizine (June 2000) and it had a little info in regards to Lidocaine. I will write what the info it gave for anyone interested

"A migraine dream cream A prescription cream containing the anesthetic lidocaine, applied to the forehead at the start of a migraine, may ease pain and nausea faster than standard medication, shows a study from the Diamond Headache Clicic in Chicago. A third of those who used the cream were symptom-free after after eight hours. Lidocaine may stop the firing of signals to the trigeminal nerve, a possible migraine trigger point. A patch could hit the market in two years. Until then, ask your doctor if a cream is right for you".

I am telling you with every headache I put some (Lidocaine) on take Imitrex or something else (if needed or if I can)take a nap and in a couple of hours feel better. This week was the real test since I was on my period. Usually, I spend the week in bed but not this week. I have, yes, spend time taking naps in bed but I have also taken my son to the movies and rented movies with him. Tomorrow we are going to the parade and will be going on vacation later this week. I am on vacation from work as I write this and know if I had not tried the lidocaine I would be doing nothing with my off time but laying in bed wondering why me with tears in my eyes. To anyone who reads this I say give it a try and I hope that it brings some relief to you.
Jenifer

Jenifer Parks <Doubleface@peoplepc.com>
Tuesday, July 3, 2001 at 09:59:56



I am 35 years of age and have been suffering from migraines since I was 18. I get so nauseated and sick my head feels like it will explode. I have been on several medications and some seem to work but not that well. I was wondering if anyone else experiecnes a numbness like tingling in the back of your head. Please let me know.

thanks
Sherry

Sherry Henson <nails4u@bellsouth.net>
Monday, July 2, 2001 at 23:30:23



I've been suffering from migraine headaches for over 20/something years but have only been diagnoise since 1988 and
have been disabled for them. I see a neurologist 2-every 3 months to twice a year. My children have been brought up around my headaches and know how to deal with it. I've tried
alot of medications plus I've tried the migraine ice packs which
I use at times with the prescribtion medication as well.

Awesome84
awesome84@hotmail.com

Terriann Orr <awesome84@ivillage.com>
Sunday, July 1, 2001 at 22:38:48



So much has happened since I submitted my first message! I am 95% better than I was then! My recovery started when my dr. recommended me for a headache clinic. I got a letter from them welcoming me to come. So I did. I didn't think they would be able to help me as I've been struggling with migraines forever! But I was surprised. Not only were there people there with my similar background, but some much worse off than I was. I learned that the cycle I was on was what was sabatoging my efforts to get better. Not only was I taking Excedrin, fiorinol and caffeine pills every day, but I was also drinking a lot of caffeine too. I was addicted to the caffeine and pain killers. I didn't realize this until I went to that headache clinic and then went to a follow up appointment with a Nuerologist. First they gave me Amerge for nine days to help me wean myself off of Excedrin (the Amerge helped curb the effects of coming off of caffeine), that was tough as I had a dull headache for about 2 weeks, and then it still took about 3 weeks before I was totally off of caffeine. I don't even have it in soda's anymore. Well, very rarely anyway :-). Then I was on a weaning plan to get me off of the fiorinol. They had me deal with one thing at a time. That too was hard, but well worth it. By this time the headaches had decreased significantly. I was also prescibed a medication called nuerontin to help me get more REM sleep at night so that I wouldn't wake up with a headache as I had been. They said that not getting quality amounts of REM (the deepest sleep time) could have that affect on me as a migraine sufferer.
But the biggest help has been injections called BOTOX. It isn't FDA approved yet for migraine sufferers, (it's used by women who want to reduce the wrinkles on their face, but they found that there was a reduction in headaches in those women who had the injections), my nuerologist has been okayed to use it as a test program. It is small injections given directly into the muscles in my head! It doesn't let the muscles seize up, causing a migraine. Weird huh? The first time I had it I got six. Two in my forehead, two in the muscles on the side of my head and two at the back of my head where my neck pain usually starts with a tension headache. It takes 3 days before you see any relief, but as I get a majority of tension type migraines the relief that I got improved my headache to non-headache days by 85%! The last time I got the injections (about 3 weeks ago)I had quite a few more, and I hate needles, but it was worth it! I have to go back every 3 months.
The only headaches I get anymore, besides the rare one here or there, is the one just prior to my period. I am 95% headache free for the first time in over 15 years!

The fiorinol is bad news! Get off of it or any other pain killers! They will get you into a cycle that you won't be able to get out of on your own. I was taking 6-8 a day at times, sometimes within hours of each other with little relief. If you can get in to see a nuerologist that would be willing to try to wean you off of it with the amerge I would suggest trying that. I can only say that I doubted anyone could help me, I had taken anti-depresants, seratonin blockers, pain killers and over the counter drugs with no results.

The joy of living a full life again is worth the time it will take to get off of the drugs, but it is almost impossible to do on your own. This I know to be true. Good luck everybody!

Jodi <jnelson@grossmont.k12.ca.us>
Sunday, July 1, 2001 at 19:45:37



I am a 25 year old male. I've had occasionally bad headaches off and on for the past 7-8 years. About 4 years ago, a neurologist diagnosed them as Tension types. I was taking Nortriptyline daily for them and they improved slightly. They were tolerable and occured about once a week then. Over the last 6-9 months, my headaches have come back in full force. I wasn't able to maintain a full-time job (fortunately I'm just out of college and have been able to live with my parents while seeking help). I went to a different neurologist about 4 months ago who said they were Migraines after hearing of my alternating temple pain. He prescribed Inderal (or Propanolol, the generic). No help. I asked for more help, and he seemed more interested in shuffling me through his office for 5 brief minutes than helping or listening. Last month he gave me some trial boxes of Zomig and ordered an MRI. The Zomig helped after a few hours of sleep, but made me slightly nauseous (which I'll tolerate over a headache) and the MRI came back clear. But I moved on to a new neurologist. He listened to me, has prescribed me to take 500mg of Depakote nightly for prevention and Imitrex for the pain. It's been a couple of weeks now, and I know I have to "be patient", but I still have the same feeling. Everyday I have a hangover effect all day, like a headache that can't decide whether or not to start. Also I get a SEVERE headache on weekends, 12 of 14 Saturdays now. Today, Friday, I got a really bad one again, and I'm just tired of this crap. If Dr. Kevorkian were available I'd seriously consider asking for his services, because I am not living. I can handle an occasional bad one, but not a couple per week and a hangover-type daily. Sorry to ramble, but please e-mail me if you have ANY suggestions. I'll listen to anyone. Thanks.

Marc <sucramus@hotmail.com>
Saturday, June 30, 2001 at 02:27:35


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