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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Please note: Posts are not automatically added to this journal. If you desire a prompt posting/response time, please use this site's discussion forum. Also, please try to use the discussion forum for question/response types of entries. The journal is intended to be a place to accumulate experiences and information, which can be used as a reference to those who wish to learn more about what it is like to be a migraine sufferer. Thanks!

Hi Everyone. I am a 25 year old woman who suddenly started with occular migraine just over a year ago. I have 'only' had four so far, so I count my blessings and know it could be much worse! However I have a horrible 'spector' over-head, as my mom, who is only in her mid forties had a ruptered brain anuerysm 4 years ago. When I have an episode, I have the fear of having a stroke, just as she did.

It started one morning back in Dec. of '99. I woke up in the dark to see a weird patch in my vision . It was like the snow on tv. Over a bit of time it turned into something that took up my side vision in my right eye. Terrified I tried to go back to sleep. Three hours later I woke up . I remember looking for the 'squiggle' and sure enough it came back,(DOES ANYONE KNOW IF IT IS NORMAL TO HAVE TWO EPISODES IN A ROW???) again ultimately screwing up my side vision. I immediately went to an emergency eye dr who dilated the pupil on the affected side and basically blew me off. She said I had migraine and that's life. And it would happen again.

Well, sorry to say she was right. Just over a year later I had another one. I felt nauseas for a couple days afterward (stress?) Went to a neuro, who said I have not had enough migraines to treat. Three months later ( a week ago) I had another. I made an appointment with an opthamologist for a THOROUGH eye exam for the beginning of next month.

When I get these 'migraines' I get dizzy. It is like closing your eyes and seeing this colored colidiscope spinning in circles, and I can't shut it off. (It lasts about 20 minutes or so).

Anyway , thankyou for reading. I am looking to find other occular migrainers to commiserate with, to hear their experiences, and what helps prevent this junk. email brannikk@lycos.com

kerry <brannikk@mailcity.com>
Thursday, May 3, 2001 at 02:45:39

I have been a migraine sufferer since I was nine years old. A little thing I inherited from my father. I have gone through hell with this disorder and now at 34 I am finally learning how to manage them. I went through my parents calling me a faker and lazy when I was suffering and an ex husband who would accuse me of being on drugs when an attack took hold. The only time I was free of the pain was when I was pregnant with both of my children. I am looking to learn more about migraines and meet other sufferers as well. I wish good health to everyone, thanks.


Emily Calloway <roczei@hotmail.com>
Tuesday, May 1, 2001 at 19:47:26

Hi everyone,

I have been on this web site before but I have not been here recently. I hope everyone is doing well. If not, I truly can empathize with you.

Right now I am feeling totally overwhelmed and upset. I am 30 and have suffered from migraines for 8 years now. I have always had at least 2 migraines per week. Now I am to the point where I have them daily. I am now ending a Masters program in Education that has nearly killed me because of the extremely heavy course load and the student teaching I have had to do.

I have had to stop a student teaching placement I had because my migraines were spiraling out of control and I was totally exhausted. The problem is that since I have chosen to hide my migraines from my professors and most of the other students, I think the professors think I abondoned the teaching without a valid excuse. In other words, since I have not missed class or anything because I chose to suffer rather than miss them, they do not believe me because they have not seen me suffer. So I have to confront my professors today, really fun. I will show them my personal files that I have collected over the years to prove it to them. It is not something I wanted to do but I feel pressured to do so to save my credibility.

Anyway, have any of you come to the point where you do not want to show your migraines to anyone and then people do not believe you when you say you have them? It really is ironic, I am being punished for not complaining all year about my migraines and taking it like a soldier.

Thanks for listening.


Gen <marsgen@visi.com>
Tuesday, May 1, 2001 at 11:22:39

Hello everyone,

I am so glad to find you great people !! I am not alone...I have had migrains for so long. This past year it has been everyday that I have had an attack . It's ususaly behind my eyes and then over my right eye. Sometimes I do get the flashing disco eye disturbance. Not fun at all, when you cant see !! I am to searching for the right med to help me. Imitrex put me in the hospital with chest pains. Zomig works fine, but not the insurance co. no longer will cover and who can afford 3 pills for $80? The Dr. put me on propranolol (blood preasure) med, so in addition to having pain I was dizzy all the time. Then came the doozy,,, lets put you on anti-depressants.. What give me a break, This guy probably never had a headache in his life!!. Well any suggestions are welcome. I will pray for everyone here and hope we ALL can beat the BEAST..

karen <mazierski@worldnet.att.net>
Monday, April 30, 2001 at 08:42:43

hello, i just lucked up and found this website and i finally feel like i belong somewhere....i have suffered from migraines for the past 6 years now and feel horrible. People feel i am lying to them cause i suffer just about every day. The light, the vomiting,everything in between. I have been in more emergency rooms than i care to remember but nothing is helping. They just recently put me on Depakot which is a mood stabilizer but also a migraine prevention medicine. Imitrex does not do anything for me at all. thanks for lending me an ear and i wish everyone luck in dealing with this painful situation

cecilia marshall <ceecee8312@gateway.ent>
Sunday, April 29, 2001 at 23:03:05

To all who may be listening; Help me ... Please

I write because I have NO one else to turn to, NOWHERE else to go, and ABSOLUTELY NO one that understands what I�ve gone through or am currently going through. And, if I don�t soon share my feelings with someone who understands EVERY SINGLE EMOTION, which I�m about to describe that I may explode, or perhaps a better word may be, implode.

My doctor told me that I suffered from Severe Intractable Migraines as well as Tension, AND Cluster Headaches. That one could trigger the other two and that I could often wind up with all three simultaneously, which made it even that much more difficult to treat me because you�re often uncertain which one you�re treating.

This is only an excerpt, of an ongoing 9-page journal, which I began a week ago. It had started out as a simple letter, to post on the web in an effort to receive support from other migraineurs, and hopefully provide some to others as well.

However, years of PAIN, ANGER, FEAR, GUILT and DESPERATION came flooding out of me and now I'm uncertain whether or not I can send it. Not because I have anything to hide, but because it is so lengthy that the space required for it may not be available, and also no one will have the time or patience to read it.


I need someone that will STOP, LISTEN, and actually HEAR what I�m saying . . . WITHOUT JUDGEMENT, CONDITIONS or PREJUDICES. And although there are no quick fix answers, I SIMPLY want the PAIN and LOSS of LIVELIHOOD I�ve ENDURED for so long to be COMPLETELY and SINCERELY acknowledged. NOTHING MORE.

I'm 48 years old and my life has been COMPLETELY and TOTALLY DESTROYED by migraines. In fact, Migraines have taken me to the outer regions of HELL, INSANITY and DEATH.

Over ten years ago my migraines became so violent and lasted for such extended periods of time that I became not only UNEMPLOYED but also UNEMPLOYABLE. Without insurance or a powerful union behind me I ended up on welfare, which is where I've been since the fall of 1991. For a year before that I collected UI.

Gradually, from when they started over 20 years ago, migraines have STRIPPED me of my DIGNITY. For years my Self-Worth, Self-Esteem and Self-Respect can best be described as being in the TOILET at the best of times, the SEWER at the worst of times, but somewhere in between MOST of the time.

Nonetheless, I'm in the process of turning my life around. And though I'm going directly from the welfare lines to dealing with multi million / billion dollar organizations, The BATTLE SCARS I carry from years of DESTRUCTION on the migraine FRONT LINES, as well as the still recurring ones, threaten to derail me at every turn.

. . . on a daily basis.

For years DEATH was my CONSTANT companion. Especially during the migraines. For several years I would go to bed wishing, hoping and praying to die in the middle of the night. In the morning I would curse because I hadn�t died and nearly every waking moment between getting up and going to bed was spent thinking of dying or of killing myself. I . . . JUST . . . WANTED . . . THE PAIN . . . TO GO AWAY. Sadly though, many if not all of you know how I�ve felt. That�s NOT life, that�s BARELY an existence

I�d like to point out at this time that I am a recovering alcoholic. On June 6th I will celebrate 24 years of continuous sobriety. Which means I�ve not consumed alcohol in any form since that date in 1977, and other than those prescribed by my doctor, I take ABSOLUTELY no drugs, and he monitors those very closely. I haven�t smoked in nearly 23 years and worked for over twenty years before migraines took over my life. I can assure you that I expected more from life back in �77. I was young, ambitious and life would be GRAND. Fate however, had other ideas.

Perhaps my letter is too long to place on your site, however, I still needed to dump some of it on someone. I still have so much more to share. I encourage anyone of you to contact me.

Thank You,
I look forward to hearing from you all

Sincerely, Luke Swan

Luke Swan <XXTREEMOBILADS@hotmail.com>
Sunday, April 29, 2001 at 17:05:18

I am 20 years old, and in my sophmore year at college. It is a Saturday night, and like so many other nights I am feeling to horrible to go out. I am despirate to stop my constant migraines. I really feel like I am missing out on all of the fun I am supposed to be having at this time in my life. It is especially hard to keep good grades, when 4 nights out of the week it is physically impossible to do homework or study for a test, I know fellow migraine sufferers understand what I mean. My friends and my boyfriend think I am cranky most of the time, and the truth is I am. They don't understand what it is like to never feel like yourself, never feel healthy, or overall just feel good. I just want to feel better. I can't even imagine a life without migraines. The preventative medicine I take makes me tired and depressed. I don't want to take it anymore. I hate taking so many pills, but my neurologist said I don't have many options left. Does anyone know anything about hypnosis, or chiropractic adjustments helping migraines.
Thanks, it felt good to vent to someone I know understands

Leia <leialuv@hotmail.com>
Sunday, April 29, 2001 at 01:25:29

Just wanted to let everyone know, that we started a chat room for migrainers.Here's the link:


Friday, April 27, 2001 at 13:19:13

iT HAs been awhile since i have visited and boy have I missed this sight!! My computer had died but now I am back. I was wondering if ne one has tried any new drugs of late. I take Trazadone as a preventative and demerol, phenergan, and fioricet for the bad day-too many of those . I cannot take DHE or any of the Triptans such as Imitex due to heart problems. Would like to know if anything is new on the market i could discuss with my Neuro next month. Thanks and hope you all have pain free days!!

Wednesday, April 25, 2001 at 18:21:15

I'll make this short...my husband (60 yrs old) has been disabled by constant headache for 12 years now although he has had migraines since puberty. He has been to Dr. Saper in Ann Arbor, MI, Mayo Clinc plus many other doctors in the past. He has tried every drug, wholistic approach, change of diet, relaxation, etc, etc only to get worse. Our life has deteriorated to "survival". This Thursday he is going to have his first shot of Botox. Has anyone had any experience with this? We're all in this together...

Mary Althaus <mca@nwc.edu>
Monday, April 23, 2001 at 17:31:36

Hi everyone. Just wondering if anyone has taken neurontin for their migraines. I met a woman who has had sucess with it. The medication is normally used to treat seizures. Thanks, Pat.

Pat <marksfam@ameritech.net>
Monday, April 23, 2001 at 11:03:29

My poor wife has had a migraine for a year straight, 24 hr a day. She tries to be tough, but everyone has a breaking point. She has been to the diamond headache clinic,mayo,u of u and nobody can help. They are going to place her on a dayly nacotic program. If anyone out there has any suggestions on what to do, or have gone through a successful daily nacotic program please email me!!!!!!!!!


joshua gahn <joshuagahn@aol.com>
Saturday, April 21, 2001 at 23:28:56

Hello everyone. I've beed reading the journal and I've posted a few times. It's terrible to se so many people with this disease, but I sure am glad I can come somewhere people know what I'm talking about. i'm going to make this quick as I'm not feeling well. I'm 5 yrs bedridden, and I'm 33 and on Disability. I can't drive, and I missed my lil girls 5th birthday party. You all know what stuff like that feels like. I'm passing out now from the massive pain. The only light I have is my compassionate, wonderful husband, and yes my daughter also. She has called 911 once (but I was just sleeping), and she knows where the smelling salts are. She gives me the same stuffed animal when I go into the hosp due to dehydration. 5 year olds shouldn't need to worry about this. OH, when I tell her I'm able to go somewhere she gets sooooo excited~ YOU'RE OK TO COME MOM? YEAHHHHHHH! Breaks my heart. ANyway ( so much for this being quick). One thing I need to say is that if you're having doctor problems seek out a University Hospital. I go to Johns Hopkins, which is 4 hours from here, but worth every cent and mile. I also have a link I can give anyone who's interested~feel free to E-mail me. I got the link from someone on here, and it's a MUST READ! NOW for my question. My MIgraine has always been on the right side of my head..always. For the last week or so I've been having horrible jabbing pain on the LEFT side. It goes away quick, but it hurts. anyone out there ever have Migraine on both sides of their head??????? I know so much about Migraine..but this is throwing me for a loop!!!!! I have 4 weeks until I return to Hopkins, but I'm curious to hear from fellow sufferers. I will be saying my prayers for everyone. OH by the way...the kind woman who sent me the pain link is now Migraine free. There is hope! If anyone ever needs to talk..I'm always here.

Shari <ilmlg4evr@aol.com>
Saturday, April 21, 2001 at 21:57:10

Hello everyone and I am so glad to find this journal. I know everyone is in pain here and but I am so happy I am not alone. I am 29 and have been living with the monster inside of me since I was 14. I was lucky and I got a 6 year break and thought I was only getting an occasional headache but then four years ago they came back with a vengence. I do not remember what life was like without headaches anymore. I too suffer due to the weather but also my period and food. My period is the worst for me if I have to go to the hospital it is always during this week. Up until about nine months ago I spent the better part of two years in bed. This is very hard to do when you are a single parent of a nine year old son. Thank God I have the mom that I do she has helped me more then I could wver say. My headaches and living in bed got so bad that it let to depression for me. Yes, it got to the point that I thought "I am not a mom to my son, why not give him to my parents who can take care of him" last June first after struggling to over come depression I tried to take my life. It was the smartest thing and stupidest thing that I had ever done. The smartest-I realized even if I spent half of my life in pain and bed I am still loved. The stupidest- well I tried to take my own life. I have spent such a long time wishing and struggling to find out why? I am lucky my doctor is very understanding and does not see me as a "druggie" in fact she has yelled at interns for thinking I am only at her office to get a note to be off work. I do not see any of her associates because they do think of me as a druggie. I only want to look at these people and let them know that I would give anything for a life without a headache. I would love to be able to enjoy a nice spring rainy day but for me I see rain and know that soon my vision will start to go. I start my period and know that pain is not far behind. I have a good job making good money and yet I live without any extra's due to the fact that I can't make it to work all the time. I have had discipline time off due to missing to much work and I have used up all family medical leave time on headaches. My co-workers think I am lazy and don't want to work. Management and my co-workers think of me as part-time- that is my nickname. Everytime I start a new medication I am so happy and so full of hope and then a couple of months later I am right back to square one. I do not date because I don't want anyone to have to deal with my headaches. I become such a bitch with them and have to get so duped up that if I do have to go anywhere i.e. store or family funtion my mom has to take me and watch me like I am a little kid. But I guess the thing that scares me the most is how will my son remember his childhood? We he remember me any other way except with a headache?

I know that I went on and on and I am sorry but it is so nice to vent.
Until I vent again,

Jenifer <Doubleface@peoplepc.com>
Friday, April 20, 2001 at 03:51:22

Good Morning, this is the first time I've ever posted to this site, but I have been reading it for some time and am so happy to know that I am not the only one! Even though we know we are not, it is nice to get confirmation by reading!
My miraines go back almost 20 years, to when I was 15 years old and fell off of a 3 person tall pyramid onto my head! I am lucky I didn't break my neck! The doctors are unsure if this was the actual cause since migraines are hereditary and my whole family has them, but I feel certain this was at least a trigger. Anyway, for years I had them occasionally (meaning 1x a month or less) and when I was 27, I began to have them daily. Luckily I had a doctor who took me seriously, but he kept prescribing different kinds of pain medicines which I feel caused rebound headaches and I ended up with (what they say is rare)suffering a mild stroke that landed me in the hospital for 9 days and parylized on my right side for 6 weeks. I have few residual effects from it, thank The Lord! Since then, my headaches are every other week. I've done the nuerology bit with a bunch of different 'tries' of prevention type medications that don't work, I've done the ER bit to be treated like a drug abuser and even been told by 2 doctors that they wouldn't treat me anymore because I was a 'drug seeker'. GIMME A BREAK! Now I have a wonderful and compassionate doctor who just treats me like a human (as well as his staff). Since I am allergic to Non-Steriodal Anti Inflammitories(NSAIDS)that eliminates 78% of most migraine prevention medications and since I've had a stroke, no Immitrex or anything like it,he just treats me with pain management. Once I feel a migraine coming on, all I do is call the office and schedule an injection. I go in, no wait, they give me the injection and I leave. He knows how I react to the medicine and it takes 25 minutes for it to take effect, so I take the shot and drive myself home just in time to get to bed, so no finding someone to meet me and worrying about my car. I have a wonderful husband and children who are understanding. I consider myself one of the lucky ones, especially after what I've been thru over the past several years. By the way, my injection consists of Stadol (2mg), DHE 45 and 50mg of Phenergan. Takes the headache away by the next morning. Good luck to all of you, I pray you all can be as satisfied as I am with my doctor.


Mary Johnson
Thursday, April 19, 2001 at 10:27:26

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