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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Hi everybody.
I haven't contributed to this forum for a while, but I have good news. In December '04, I had an IUD called Mirena inserted. Now,six months later, I am GREAT!!
I still get the migraines every month, but they are getting less and less severe as each month passes.
During my last one, I was down for only 24 hours and only one injection (I'm usually out for up to 60 hours and have had to have up to four injjections per attack).
I honestly believe that my tide is turning. If I keep going this way, I am allowing myself to dream of a 'migraine free' existence.
I know that I am probably considered one of the lucky ones. Please understand that I am posting this entry to encourage other women to think about this as a possible solution to the hell that is a migraine, and not 'showing off'.
Best of luck,

Emma Norris <emmaleahnorris@yahoo.com.au>
Saturday, June 4, 2005 at 11:57:13

Hello fellow sufferers

Just thought i'd add my comments for what they're worth. i've had migraines all my life, i'm now 43. Zomig usually takes them away now but i was taking it too much. Recently i was in one of those Chronic Daily Headache situations. i'm sure many of you know what i mean. Headaches every day for weeks at a time. Taking lots of drugs and nothing really working. i kind of discovered my way out. It may help others.

1. Limit how much caffeine, one regular and the rest decafe.

2. Limit your sugar intake. Stop eating really sweet things.

3. Try to get regular sleep. Big affect for me.

4. Get lots of excersise. Gently increase over time and push your comfort level!

i'm down to one migraine per week now, sometimes i can just suffer through it without taking any drugs. It seems like you just have to have one now and then and then the frequency diminishes for a while.

This has worked for me, maybe someone else too, so try it and good luck.

Ken <fastgod@telusplanet.net>
Thursday, June 2, 2005 at 07:20:42

Well I'm a migraine sufferer and my daughter is to. She is 10 and is having a difficult time being a ginnee pig trying out all this new medicine for her migraines. She has had them for 2 years and lately has had more than her share. I'm not sure what all is left for her to try. She has been on amitripylene, midrin,trileptal, amerge, maxalt, imitrex, you name it she's taken it. And now she's in the middle of a cluster form of a headache. She has even done a headache study with our local hospital.I pray that it's hormonal and when puberty kicks in it will STOP. But it doesn't look that way.
I am able to get some relief with topamax daily as a preventive and amerge as needed. But I notice my migraines worse around my cycle. If anyone has heard of any good options for children please let me know.

Tuesday, May 31, 2005 at 22:08:02

Dear Fellow Suffers,
I am writing to share an experience that I had I believe is extremely important to share with you.It is in regards to the newly approved drug,Topomax.
I have had migraine headaches since I was 10 yrs old. I am now 50 yrs old....a long history and you can well imagine, a long life of "chemical warfare" against these demons.
Almost exactly a year ago, (prior to it being FDA approved), I was prescribed Topomax. I LOVED it. Truly, folks, after many years, I had found a drug that seemed to not only decrease the frequency in my headaches, but also the severity. It was probably the best 3 mos. I had as a sufferer.
THEN, I noticed that my vision was blurring............all the time, for a couple of weeks. I finally called my eye doctor, and after she examined me,informed me that my "intra-occular pressure" was much higher than it was the previous exam.(I had developed glaucoma)
Thank God for me, that I am a nurse, never take anything without knowing the side-effects, and realized that the Topomax was the probable culprit. I went imediately from THAT office to my prescribing neurologist's, and of course she did more blood and urine testing.
Folks, not only was I developing glaucoma, but also kidney stones (urine crystals) another side effect.
I want you all to be very careful if you take this medication!!
It was one of the BEST remedies I had taken in the years I've suffered,but I was also lucky that I knew the side effects, sought help, and now the damage has been reversed because it was CAUGHT IN TIME!
Report ANY blurred vision immediatley to your Dr.,and if you can afford it, demand ocassional lab tests (urine especially) to be sure you are not geting ay urine crystals that could become kidney stones.
I miss the freedom Topomax afforded me, but would not have traded my eyesight for it! BE ALERT!!! Lorraine

Lorraine Vail <rainynurse@yahoo.com>
Friday, May 27, 2005 at 03:29:18

Well, I thought I'd weigh in with my experience. I'm similar to some of you in that I've suffered for a long time, found little that helps for long and am still searching.
My first migraine was when I was about 20 or so and I'm now 40. I've been to so many doctors and to the ER so many times (once on xmas day--that was fun!).
I'm a patient now at the Diamond Headache Clinic in Chicago. I'm on a huge regime of daily medications that are supposed to help with daily headaches and migraines. Sometimes I think I'm doing better and sometimes not so much. I'm also on Topamax, which I've seen on a lot of entries. The only thing that's done for me (in my opinion) is changed the way soda tastes and helped me lose a little weight. I can't really say there's a measurable difference in the frequency of the daily headaches (which I would call tension headaches) or the migraines. I am happier, however, with the treatment of the migraine itself. We've tried alot of different migraine drugs. Right now Relpax or Zomig nasal spray works o.k. If it gets really bad, I've got tordal injections that I can give to myself.
I've been thinking, however, that I'd like to find some natural daily treatments rather than the plethera of drugs I'm on. I just feel like they're eating my insides up....no evidence of that, but I just get that feeling. What's the difference in taking these drugs everyday and taking ibuprofen like candy everyday?
Thanks for reading!

Lana <LanaGarcia@insightbb.com>
Monday, May 23, 2005 at 01:26:38

Hello. Anyone out there taking Sibelium (Flunarizine )Can it become addictive ? does it work? I've just been prescribed this medication. I'm a Migraine sufferer for the last 20 Years, I'm at the end of my tether, Tryed Imitrex Zomig.Feverfew and almost everything I can think of.When I was living in England I took Migraleve-Paramax(Powder)-Dixarit-Sanomigran. All had some affect for a while then I just get amuned to them. I Wake up every day now with a Migraine. No social Life at all. It's really miserable as many sufferers will tell you. Anyone HELP!!!!!!!!!!!!!!
Diane. E-Mail: diandhank@sasktel.net

Diane <diandhank@sasktel.net>
Thursday, May 19, 2005 at 23:25:05

Hello. Anyone out there taking Sibelium (Flunarizine )Can it become addictive ? does it work? I've just been prescribed this medication. I'm a Migraine sufferer for the last 20 Years, I'm at the end of my tether, Tryed Imitrex Zomig.Feverfew and almost everything I can think of.When I was living in England I took Migraleve-Paramax(Powder)-Dixarit-Sanomigran. All had some affect for a while then I just get amuned to them. I Wake up every day now with a Migraine. No social Life at all. It's really miserable as many sufferers will tell you. Anyone HELP!!!!!!!!!!!!!!
Diane. E-Mail: diandhank@sasktel.net

Diane <diandhank@sasktel.net>
Thursday, May 19, 2005 at 14:56:17

Hi guys.
Iv'e found this site through a google search and just thought I would put in a wee note about my life with migraine.
I have sufferes attacks for the last 15 years and have been hospitalised on a number of occassions. I know I'm in for a bad one as soon as I feel a tingly sensation in my lips and the top of my head. Within minutes my lips will go pasty white then turn blue. At that point all I can do is fill myself with paracetamol and ibuprofen (about 600mg of each) taken with a fizzy drink to aid breakdown of the tablets (as instructed). I have tried the recent new 'wonderdrugs' however they have had no affect. Pain will go away within 2-3 hours, however I am usually left with poor co-ordination and articulation for a couple more days.
As I write this I am sat at home, off sick with my latest attack.
Thank you for letting me share both yours and my experience.

Andy Cole <voodoodoughnut@tiscali.co.uk>
Thursday, May 19, 2005 at 03:40:05

I stumbled on this page while looking for naturalpathic ways to handle migraines. I've had migraines since I was 5 (that's twenty years!) Apparently, my pediatrician didn't believe my mother, who's a nurse, when she told him I got migraines. She had to drag me into his office during one of my attacks for him to finally listen up. Needless to say, he's not our doctor anymore...

The worst migraines were when I was going through puberty, all those hormones. Since I've gotten older, I've recognized most of my triggers- MSG, dehydration, not eating enough during the day, humidity or any drastic weather change, and sometimes the air conditioning in someplace like a mall or office will do it too.

I've been the emergency room for IV pain meds too many times to count. The worst was when I moved out on my own, and had my first HORRIBLE migraine. I cried on the couch all night because it hurt so bad, but I couldn't drive myself to the ER for help! When I was younger, I took Fioracet, Fioranal, Imatrex, and many others I can't even remember. They've been more managable in the past two or three years, mostly I just take Excedrin. That usually does the best job. But lately, I'm really worried about how the Excedrin is tearing up my stomach and liver, and what they're going to be like in another 20 years! Does anyone have any naturalpathic suggetions that have worked for them? The only one that really seems to work for me is brushing my teeth when I get a migraine, because of the peppermint. Any thoughts?


Tai <taianna@msn.com>
Tuesday, May 10, 2005 at 22:30:09

I've been dealing with migraines since I was in high school (and tension headaches since 1st grade). I'm now 27 years old. I've seen a number of doctors over the years and have been prescribed numerous migraine medications, with little success.

I've had some pretty traumatic experiences while in the midst of really bad migraines in recent years. In 2003, when I was living in Tucson, AZ, I'd had a severe migraine for three weeks and was at the end of my rope. No medications, shots, etc. were working that my primary care doctor had prescribed. I ended up in the ER at University Medical Center. They put me on morphine, and then ran CT scans and then did a spinal tap on me. Their genius diagnosis? Headache. Duh. That's what I told them when they admitted me. They also had me do an MRI scan (outpatient). That didn't find anything either. Complete waste of time. What finally broke that bad one was a chiropractor (in his words) "cracking the sh*t out of me." Although, that ususally doesn't work in the long run.

Sometime after that my primary care doctor put me on Topamax, 150mg daily. She had me take Vicodin pills when a migraine came on and the Topamax didn't prevent it. And for a really severe migraine attack, she did Demorol. This worked for a few months and got me off the buckets of Excedrin migraine pills that I'd been taking for years in a vain attempt to get through my migraine attacks. But it worried me that I had to take narcotics so often.

Recently, I moved back to St. Louis from Tucson. I have had a VERY hard time finding a primary care physician that knows how to treat migraine disease and is actually truly educated about it.

I have found the Ryan Headache Clinic that sounds hopeful, but they can't get me in until July. And in the meantime, I'm dealing with not only my usual migraine attacks, but also lots of rebound headaches from all the Excedrin I am once again having to take for lack of other options.

This morning, after having suffered a bad migraine for seven days, I went to St. Luke's Urgent Care on Clarkson and was seen by Dr. King. I gave Dr. King my history, brought past ER records, etc. He ignored all of that. He said that I didn't have a migraine because if I did the migraine medications would be working, and that if one migraine medication didn't work for me, none of them would because "all migraine medicines are the same." He told me that I had a tension headache. I told him that in my experience, migraines can be very complicated and some migraine medicines work for some people and some don't, but it can be a complicated process--different for every patient. He said, with a great deal of arrogance, "I know EVERYTHING about migraines and they've NEVER confused me." He refused to listen to me in any way or to explore any options. He basically treated me like some sort of drug-seeking addict (even though it's been 8 months since the last time I had a shot of Demerol). He then preceeded to write up a prescription for a tension headache to be used with just ibruprofen. I had to tell him four times that I had tried that medication in the past and it hadn't worked. He huffed and dramatically ripped up the prescription paper in front of me. I was in tears by this point because I felt so helpless and it was clear I wasn't going to get the help I needed.

So I went home and overmedicated on the Excedrin which isn't going to help in the long run. I'm thinking about going off the Topamax because on my last eye exam the doctor saw possible glaucoma (a side effect). I'm waiting to see a glaucoma specialist later this month. Plus, I'm still getting frequent migraines.

Also, I'm still trying to find a good primary care doctor until I can get to the Ryan Headache Center in July. If anybody in the St. Louis area has suggestions, I'd appreciate it. In the meantime, please avoid Dr. King at St. Luke's Urgent Care. Look up "prick" in the dictionary, and you'll find his picture.

Andria Van Buskirk <argh77@yahoo.com>
Tuesday, May 10, 2005 at 14:12:38

I too! suffer from migraines since I was a teenager. They were bad then but now i have 5 to 10 a month . I'am lucky compared to those of you who have them every day. Ihave tried alot of medications and found that it would work for a little bit then then it would stop working. So I started looking into new things like controlling the pain I took Yoga Classes, Now I teach them!Still Have lots to learn and haven't found the answer yet I feel its a unbalance of our body and our life style. So I started studying Ayurveda,balance of the mind, body, and soul.at least this will take away one of the headaches away.
I'am also sensetive to the air I nead to keep my head warm and ears so I put cotton in the ears and wear a hat,scarf aroud the neck,its part of neorology.
I'am seeing a chiropractor twice a week ,he says he can help. I too still feel I loose so much of my time to these migrains my husband is tired of them and wants me to work more of a full time job, even a part time job would be great.Its quite the strugle to balnce the negative out. I completely feel for all of you whom go throw these the emotions thaat comes with themits unbeleivable. I will not let them take control of my life there has to be a answer? We are Just not asking the right questions?
Mine also comes around my cycle too!
And my Mother and my mother's father sufer from them.

michele <michelep35@yahoo.com>
Monday, May 9, 2005 at 11:13:13

Not the only one--that is for sure! Well, like most of you, I am still struggling & have not found a miracle drug or treatment. I started having migraines 9 months ago the week before I would start my period. I would have the migraine anywhere from 4 days to 3 weeks (lasting throughout my period) and usually ending when I started my new pack of birth control pills. I am on Yasmin. I first went to my general practitioner to just get some relief--tried a ton of migraine medicines after staying home from work for the first time. Midrin, Celebrex, Relpax, Imitrex, Frova, Darvocet, etc.I have saw an ENT first to see if it was related to my sinuses & allergies. Although I do have terrible sinuses & allergies, they sent me to a neurologist. I ended up in the ER after a bad 2 weeks of a migraine that would NOT pass. They gave me a shot of Dilaudid & phergin (sp?) which just made me puke. The migraine finally slipped away. I kept a headache calendar which noted the days I got migraines, my menstrual cycle, my birth control pill cycle, what meds I took to relieve the migraine, etc. I took all this to my neurologist at my first appointment.

My neurologist did the following for me approximately a month ago: put me on Topamax (started me at 25 mg, moving me up to 100 mg a day as I can tolerate it), & prescribed me Imitrex. I've been fighting a migraine now for 3 weeks. At 2 weeks, I went to my neurologist & they said that the Imitrex was making it rebound. They gave me a Medral dose pack (steroids), Lortab & Ambien (to make me sleep) which they said would break the cycle. It finally did. I was migraine free for a few days. But then it came back. I now have the migraine again & have had it for an additional 4 days--so we are going on 3 weeks of this bad boy of a migraine. I have not touched the Imitrex after what it did to me last time...they told me to take Frova + 2 Aleve next time. My main problem is that I will take the maximum dose & still be in pain! The meds make me feel like crap...so it is migraine or feel like crap?

Anyone have luck with Topamax? they have told me to just wait for the Topamax to kick in. All I Have heard is about the kidney stones, so I am not drinking cokes or coffee, drinking lots of water & occasional cranberry juice, plus a multivitamin.

Amy Bornstein <amy.bornstein@us.benfieldgroup.com>
Friday, May 6, 2005 at 12:13:14

Hi. I am not one of those people who gets migraines everyday, thankfully, so I have learnt over the years what triggers them for me. I have had my eyes checked, and they are ok. Chemicals are a huge trigger to my migraines. Have other people found that? My triggers are either one of or a combination of these:

- Sleeping with a crooked neck or new pillow
- Not enough sleep
- Not eating enough food in the daytime (I must eat regularly)
- Bright lights for long periods of time.
- The cleaning aisle in the supermarket, i.e. disinfectants, washing powders, toilet fragrance.
- Any chemically made perfume, aftershave, strong synthetic product.

I avoid any smelly chemicals and thankfully, my family are very understanding and assist when I have a specific request.
Eliminating these from my life has made my migraines appear only every month or less, but some things are hard to avoid, like workmates perfumes or aftershaves. I even ask that they reduce their usage, and mostly they comply.
Good luck every one!

Sharon <sharondodgson@yahoo.com.au>
Thursday, May 5, 2005 at 06:27:24

Unfortunately I can't tell you how many times well-meaning people have asked me if I have tried Excedrin for Migraines. I guess people who don't suffer just don't get it as even prescriptive Imitrex sometimes doesn't get rid of the migraine. I've gone to the emergency room once for a shot of Demerol. The migraine went away only to return 3 hours later. I was so devestated. The worst part of a migraine is knowing that once it starts you may have it for up to 4 days. This is no joke. Sometimes all I can do is try to lie down in a dark spot and no kidding, you don't sleep when you have a migraine. 3 days later after you finally might be fortunate enough to get rid of the thing you then are so physically drained and you take a look at all the things you have been unable to attend to for the past 3 days and it becomes overwhelming. That alone could make you sick, just trying to play catch-up for losing 3 days of your life. When you multiply this times a year, it becomes unbelievable how it just steals your life away. I have found people at work may or may not believe the extreme, excruciating way it can debilitate you. Most who have known me a number of years can tell by looking at me when I have a migraine. I don't even know how I make it through my work shift. I can't eat when I have a migraine because it feels like the nausea would cause me to throw up. I have been to so many websites and looked everywhere for some relief. I even had a hard time convincing my doctor that I was suffering, so that I could obtain a prescription. Only my children know that they are "real". I am so afraid that they must be genetic to some extent. I have witnessed my 16 year old daughter to get quite a few headaches and would not be surprised if one day she comes down with a full-blow migraine attack. I am about to try something new that I just ran across today. It is called GelStat and read the testimonials and decided to try "one more thing". It is used subligually and does not require a prescription. The ingredients are feverfew and ginger. After reading the great information and realizing that you have many blood vessels and it just makes sense to know that it gets to pass the digestive tract and begins to work so much more quickly when it is absorbed sublingually. I am eager to try this. I have tried Migrahealth and didn't have much success. Sometimes it's hard to tell if something is working because I have skipped months before without coming down with a migraine. Trust me when I say I praise the Lord for letting me have a normal month. I just am so thankful not to get one. I have kept journals regarding my migraines and find that they are certainly hormonally related. I only get the migraine just about the exact same time I start my menstrual cycle. If I don't get one on the first day I find that as my period is coming to a conclusion that the risk increases again for getting one. Wouldn't matter if I drank tea, coffee or ate some particular food. Mine are not related to what I eat. Once I have them, I can barely stand to drink water and thinking of food is out of the question. Anyway, I hope the GelStat works. I will be sure to post again and let everyone know. I love this website and will be sure to share it with any migraine sufferers I might know.

Good luck to all of us!

Julie Riddle <julie.riddle@verizon.net>
Tuesday, May 3, 2005 at 14:14:27

Hi my name is Tina and I've had migraines for 6 years. They started after delivering my son. I wasn't able to take care of my son for the first couple of years like I wanted to. He used to say "mommies room is in there" he would point to the bedroom. It was really hard on me and my family. What was the best time in my life was replaced by pain and depression. I would sit and cry my head hurt so bad. I've tried 45 different medications. Which have included depression pills, iv's, shots, pills, suppositories, botox injections, other pain med injections, etc. I have seen 15 different doctors. Which most of them said it was from depression. I tried to explain to them that I wasn't depressed until the migraines took over my life. I finally got so tired of living with pain all the time and so many meds, and doctors not caring that I tried to commit suicide. I have bad pain in the c1 and c2 areas all the time. I've seen chiropraters, they don't help. I get migraines every week that puts me out of commision for at least 3 days. There is weeks where I will be in the medi-center every day for 3 days getting shots to find that it only takes the edge off. I've had another baby which the doctors said would never happen but it did. I thought WOW, another baby I couldn't deal with, but thankfully I have managed to get by. Thanks to my mom and sister in law. I worry all the time that I will mess up my kids by being in pain all the time. In July 2004 they did a complete hysterectomy in hopes that it would regulate my hormones and the migraines would stop, but they didn't. I currently did botox injections, 10 shots. 5 in front 5 in back. 67.5 mgs. It took the edge off for 5 days. I thought Wow a break! I have to go back to get more, a higher dose this time. I worked in a place for 8 years then I couldn't work any more. I have been on long term disability for about 2 years. I'm trying to get on social security but no word yet. I've been waiting on my lawyer for over a year now, no hearing date? Basically the day I had my son my life had totally changed, physically, emotionally, and socially. The things that I loved to do I'm not able to, I feel like I can bearly take care of my kids, and give them what they need. My husband is pretty good as far as knowing that I can't help the pain. My family they don't understand, but beleive me they give lots of input!

Thank you for reading my story!

Wednesday, April 27, 2005 at 16:20:13

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