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, I am new to this site, but I am wondering has anyone been on acetazolamid 250 mg and can you share your experience with taking this ... I am reluctant to start taking this as most meds I have already been perscribed have made me feel 'sick' or just don't work ... any feedback would be appreciated as I will start taking this in the next couple days ~ I read most of the stories and I am glad to know I am not going crazy after all, please email me :) Thank you, Stephanie

Stephanie <skachmarzinski@hotmail.com>
Monday, September 24, 2007 at 07:03:03

Morning all. Found this site by accident while looking up migraine information after having a really bad one last night. Seems my story is very similiar to alot of stories ive found on here. im 27, since i was around 5 or 6 ive had really bad headaches. for years they thought it was caused by just simple light sensitivity and also my poor vision.. ive become very familiar with numerous over the counter meds since then. my first migraine kicked in around 2000 and knocked me flat. i had them continously for months and everyone just told me that they were simple headaches. ive had a few different prescriptions of glasses since then each time thinking that my old prescription might be the cause of it, but after lsat night i now know thats not the case. my glasses i have now are brand new and my vision rocks. after doing the research ive found i have classic migraines and thankfully i have people around me that udnerstand what im going through now. i have an appt with my doctor morrow to find out what to do becasue i cant take the pain any more so plesae wish me luck. this will be my first time getting this issue taken care of and getting treated for migraines and not just headaches. id just like to commend everyone who hasnt been fully knocked down by them and a big thanks for everyone who hsa shown me that im not alone in my suffering. who would have ever thought that something that is thought of by so many people as "just a really bad headache" could not only be so much more then that, but also bring so many people together for support. please feel free to contact me...rnbowpixi@yahoo.com and for anyone new to the pain...dont give up, it can take yeares to get it figured out and diagnosed correctly.

Rob V. <rnbowpixi@yahoo.com>
Monday, September 17, 2007 at 11:54:05

Hello Folks,This is my first entry in the journal.I stumbled on this site trying to get info on new migraine meds.I am amazed,it's like somebody else is living my life.Until I read some of the posts and went on the discussion site,I thought I was unique.I'm so thankfull for this web site.I've read that I'm not the only one with a tumour on my pituitary gland.Not the only one that gets migraines daily.Not the only one that is totally frustrated with doctors and ER's and being used as a ginea pig for new meds.
I started getting them as a young child, but they got worse after each of my children were born.By the time I had my last child(she's 19 now)I was getting them weekly.I had hysterectomy at 24, but they didn't stop.I've lost my hearing for 10 days,lost my sight for 2 months and now have limited sight back.Have lost feeling on the left side of my body and numerous other conditions, that they say are associated to the migraines.My biggest regret is that I've passed them on to my daughters.
They have tried every medication known to man or beast,and have had allegic reactions to most.I have had nerve blocks done,bio-feedback,relaxation therapy.If they said there was something new,I would jump thru hoops in the hope I would finally be able to lead a normal life.5 yrs ago,my Dr. made me stop working.That was really hard.I've been a photographer for 17yrs and loved it.Now I spend my days on the couch or in the "Bat Cave",my dark bedroom.I've lost friends,jobs and 2 marriages over these stupid migraines and am in the middle of a third divorce.
I'm now on very high doses of morphine and neurontin just to get through the day.I somedays think it's not worth it,but I couldn't do that to my family.
Next week, I'm going to try acupuncture again.It seemed to help when I had it done before, so will try again.
I think it has helped to read other peoples stories and know I'm not alone.It makes me so sad to read that other people go through the same things I do.I always say"They can send a man to the moon,but can't figure out how to relieve the agony of migraine sufferers."
I would really like to hear from other people like me.I've lost so many people in my life because they don't understand.To them,it's a headache.Get over it. To me,it's a life sentence.I hope and pray that it won't bring my daughters down the way it has me.
Thank you for being here and for reading my story.
I send prayers and good wishes to everyone.

Brenda <brenda_macrae67@hotmail.com>
Friday, September 14, 2007 at 19:47:30

i was diagnosed with migraines at the age of 3 years. they found mine when i used to run to mum, holding my head, screaming in pain, then promptly slipping into a coma like sleep. these continued with alarming frequency and severity until i was approximately 8 years old, when they tapered off. it seemed like the migraines had disappeared altogether. through out all the testing, no doctor or specialist could find a trigger, and to this day they still cant. alot are reluctant to try to do much, stating the brain is still not well known and is a very complex organ. when i reached 13, the migraines returned, although not as frequent, and not as severe. they were easily managed with panadol, a dark room and cold compresses. this continued for the next 10 years, until quiet unexpectedly the migraines became slightly more frequent and severe. just after i turned 26, i had a severe migraine attack, that prompted a short hospital stay, where i was sedated for a night. again, the migraines cause was unexplained and no tests revealed any new light. last year, the migraines again got slightly more severe and frequent. however they were put down to the course i was attending, in prevocationary hairdressing, believing the inhalation of chemicals had cause them. i was often laid up for 3 days in intense agony, and on occasions visited the local hospital for an injection that knocked me out. no doctor tested for a cause, and i completed the course. at the beginning of this year, seemingly without no reason, the migraines became quiet aggressive in nature. i now suffer them more regulary then i ever have, and as severe as i did a child, although i have yet to slip into a coma like sleep. but the symptoms i exhibit are, the same as the ones i have a child. i often have no warning they are coming on. my eyes become glassy and dilated, my vision starts wavering, then i loose focus. i become weak, feel horrendous dizzy spells, highly nauseated, and often become quiet shaky. within 5 minutes of those symptoms, the migraine hits full force. i end up in tears, clutching my head and moaning. twice within the last 3 days, ive had to visit the hospital for an injection. my doctor has put me on sick leave from my casual job, and is monitoring me. he has expressed that if the migraines do not decrease inside 3 weeks, he will put me onto medication. as of yet, a trigger for my migraines still hasnt be found. there is no explaination. to make matters worse, i have been found to have a folate deficiency on top, with no viable explanation as to why considering i am very concsious of eating properly. my mother worries frequently, as i am her only daughter, and is particulary worried that my younger brother is displaying similar symptoms to my migraines. we was diagnosed 2 years ago, and is only 10 years old. i turn 30 at the end of september. im not perhaps as scared of them as i should be. i have suffered these migraines all my life, for as long as i can remember. however its taking its toll on me, being a single mother of 2 very active daughters. i have to be thankful i have such a wonderful and supportive family. my only one true wish, is to oneday find a cure, or perhaps a cause, and finally be free of the pain.

Debbie <dmills-l@bigpond.net.au>
Friday, September 7, 2007 at 07:12:44

Hello to all,
I came across this site when I typed in SANDOMIGRAN. I was seen by my neurologist yesterday. I wanted to find out more about these new pills for me to try. I have already tried Imigran, and numerous antidepressants (but I am not depressed). Has anyone been on these? Imigran works but only when I have the migraine, these SANDOMIGRAN'S are supposed to stop then occurring. Do they? I have suffered migraine's for nearly 20 years and they are now getting more frequent. I have changed my diet, in fact all my life style has been changed over the years to accommodate this disability. Yes, I do say disability, even though it is not recognised as such by the Australian government. I have lost numerous jobs and friends by constantly canceling meetings at the last moment. I am, like you, waiting for the miracle cure. If you are a local (Australian) I would dearly love to hear from you, also anyone else who has good advise. I wish you all well and stay strong.

Wendy <sde67987@bigpond.net.au>
Thursday, September 6, 2007 at 05:44:07

I was reading the journal entries and I am so sorry so many of you are suffering from migraines. I always feel I am alone and that no one understands but reading your stories (sadly) lets me know I am not.
I got my first migraine when I was 9 years old, came on very suddenly with vomiting. I was on a few differnt medicines that may or may have not helped. I had a 2 month migraine when I was 10 which just seemed to go away with time, and when I was 12 I had a 8 month migraine, which severely dibilitated me, I tried every medicine that was available, stayed for observation in the hospital etc, nothing ever helped, usually just made me worse. I started getting adjusted by a DO and slowly started getting better. Through high school I had a constant slight headache but nothing I could not ignore with one or two severe headaches with ER visits a year.
When I was 19 I got my wisdom teeth out, and a few weeks later started getting horrible infections which landed me in the hospital and on antibiotics, then I had to get my tonsils out which continued the saga. I have not been healthy since then. I was diagnosed with chronic fatigue syndrome and the next year my migraines came back (March 06') at full force and has not gone away since. I have been retested with every test I know of, I have seen every specialist and I just seem to keep getting worse. I have been on the couch for the last year and a half with a few hospital visits here and there. I have tried many medicines but I have a very sensitive stomach, most medicines give me such bad side effects I can not take them. I use relpax for rescue which usually helps with the edge but the side effects are not fun. I also suffer from constant nausea which sometimes can be worse than the migraine. It has been so long and the pain is so agonizing, I just long to be normal again. I have been married one year and have the most amazing husband and just wish I was able to do more than sit on the couch. The last month has been very hard, I seem to be getting worse again and I am left with little to no hope anymore. Will I feel like this forever? How will I ever get through? I just don't know what else to do! One of the hardest things is that the doctors don't know why I am so sick so when ppl ask whats wrong I say I have chronic migraines and they just kind of say oh with a look like well thats not that bad. I think people don't believe how sick I really am. It makes it harder to deal with, I just want a dx and some help!
If anyone wants to vent or just talk about anything, email me!

Meg <meg_mct@yahoo.com>
Friday, August 31, 2007 at 12:16:30

Hi, I'm Leneisha and have been suffering with Migraines now for 6 years. I had headaches as a kid as far back as I can remember. First they told me it was sinuses and that I needed glasses but when that didn't help I just lived with the headaches. They seem to be tolerable and I would just take OTC medicines to control them. When I had my daughter in 2001 the migraines started. I had never had them before and was not sure how to deal with them. I felt as though my head was going to explode. With heat (whether a warm bath or being outside in the sun or just not real cool inside) I would get a migraine. If I got stressed out about something even if it was subconsciencly I would get a tension headache that turned into a migraine. I tried CT scans, MRI's and allergy testing...nothing was found with the scans but I did find that I had some allergies - not food so I got on allergy shots. These seemed to help quite a bit. I just had my second child in May of 2007 and I have started having migrains again. I take Loratab 5mg for the lighter types of headaches but when they get a little worse then I take Imitrex - I have the 25mg the 50mg and the injections. I feel that the Imitrex had side effects I don't like though. I get a very tensed jaw and it hurts like I have been clenching my jaw for hours. If I take the injection then I can feel it go through my brain and it makes me feel very wierd. I then get very sleepy and fall asleep for 20 minutes and the headache/migrain is gone but I have lock jaw symptoms and just feel wierd after. I am interested in trying Furinol with Codine has anyone ever tried this? Please email me and let me know what you have tried that works with the least amount of side effects. LENEEDARBY@YAHOO.COM

Monday, August 20, 2007 at 10:57:56

re: Hope for the "hopeless"....the "incurable" cured.
Chronic pain an opportunity to dive inwards...a teacher for Truth.

I am a 36-year old woman and like many on this forum, was severely disabled for nine years with:

constant migraines or headaches,

I had as well:

Chronic Central Pain Syndrome, Severe Fibromyalgia, Severe Myofacial Pain Syndrome, Chronic Fatigue Syndrome, Transverse Myelitis (lesion in neck cord), Thoracic Outlet Syndrome and Endometriosis...whew! Not even a psychiatric case....that,
at least would have been an answer.

All this caused me to have a constant migraines, headaches and severe neck pain. It also caused my body to have widespread neuropathic, arthritic pain, severe muscle spasms/rigidity, severe weakness/fatigue and severe menstrual cramps.

Some think it was due to the numerous accidents I had as a child, repetitive and abnormal levels of emotional stress and repetitive stress injury. The lesion in the spinal cord
is thought to be a viral cause but everything remained a
nagging mystery.

My now ex-husband was a financial advisor and we had excellent health insurance. I was able to see the leading experts in California of every field...For 7 years I desperately sought help from over 70 practitioners including highly specialized doctors, alternative medicine and healers. No drug could help, no therapy did either.

The migraines and neck pain would get so bad that I would go into a semi-coma like state with no motor function or response to stimuli. At times, my body would also tremble uncontrollably and hyperventilate in addition to the normal migraine moans and screams.

I was always surprised to wake up alive, amazed that the body could endure so much pain and still live thru it.

As many of you know intimately, I lived my life in a dark room with ice, injections, a TENS unit (electrical stimulation) and numerous medications; which had very little success. I always wore sunglasses, hat, earplugs and sometimes a cane and neck brace.

I was an alumni arts scholar, summa cum laude student at UCLA and had a promising future that completely crumbled. I felt 90 years old and lost my career, my marriage, social/family life and future prospects to this incurable illness.

For those still battling SS disability I was able finally, after a five year battle, to get SS disability. Thanks to one compassionate judge in the last court of appeals who battles with migraines.

As a last resort I made an epic journey to India to seek guidance from my spiritual teacher, Ammachi.

This is when I met Devananda, an extraordinary healer/monk from Japan (www.radiancehealing.net) who is so famous there he has his own ashram (centre for devotees to live)

I have been receiving healings for the past 2 1/2 years. My life has revolved around these sessions and the results have been miraculous!

I�ve gone 29 days without a migraine, only get a severe migraine 1-2x's a month now and often go down to zero pain now. The other pains are so reduced I was able to be a tourist in 3 countries and can now do many things i never dreamed of. I actually feel my age again.

I only take one daily medicine now, compared to 13 prescribed medication just one year ago! I use the Torodol injections for emergencies 1-2x's a month.

Best of all, I have hope in a future again. I am 85% better and am fully confident that I can be 100% better soon.

The fact that I have not gone crazy or attempted suicide during this time I attribute to being a meditation enthusiast.

The ability to meditate is a life-savor and I would not be here today without it.

Most recovering from the severity of constant pain would still not be able to re-integrate back into the world due to trauma.

Meditation and psycho-therapy has enabled me to move on easily.

There is a way in addition to drugs...

It has everything to do with disciplining the mind, deep relaxation, visualization and strengthening the "feel good" receptors to win the battle and
carve out new neuro pathways that stand a chance against the "broken record" pain pathways.

This not only alleviates that pain but also reveals the deepest mysteries of life and who we truly are. Pain can be the most direct road to a Realization of
the True Self. It forces us to Stop and be Present. It gives us no choice but to rest in That, which is unaffected, That which is Love, Joy, Peace itself.

As all of us migraineurs know, constant pain is a hellish existence but can be the greatest of
all teachers as nothing else forces us, at the exclusion of everything else, to access our
Spirit for relief.

I have been meditating since a young girl and this life saving tool has been my key to sanity and to truth of Being.
This, along with faith in a world-class healer, a team of supportive and loving pain doctors and a loving family has put me on the path of total recovery from 7 severe pain syndromes!

I hope my story helps...

Feel free to share your thoughts on this topic...
email: ammasminaksi@yahoo.com

warmest regards,

laminaksi <ammasminaksi@yahoo.com>
Monday, August 20, 2007 at 08:53:56

I've been reading the posts on this site and noticed that a lot of us have had a problem with the migraines increasing as we get older. I've had the same problem lately. I've had migraines since I was 14. I'm now 47, so that's 33 years of pain. A few years ago I did a simple elimination test for food triggers and found my triggers are avocados and onions. The reaction to onions is so severe that I can get a massive migraine just from smelling it. BTW - I have an outline of the elimination diet if anyone would like to try it. Just email me. By cutting out the triggers, I was able to take my pain down from almost daily to about once a month (that tricky hormone headache!) My doctor tells me that the migraines get better with menopause, but they get worse for a few years before menopause when you go through "pre-menopause." It's the first time I'd heard about this, but it might be worth checking into.

Some good news though...one of my other doctors mentioned to me that there was a doctor that was getting good results with vitamin B2 and that I should try it. I did and it's made a big difference. The headaches are much less frequent than before! It's one tablet a day, it's OTC, and it seems to help. I had tried B-Complex before that included B2 and it didn't help, so try straight B2. Doesn't hurt to try and might just help.

Good luck to all of you.


Carrie Zeidman <czeidman@elanstudios.net>
Saturday, August 18, 2007 at 02:07:42

Hi my name is Tammy and I have had migraines since I was 14 years old, I am now 43. My life has been controled by this disease for far too long, I like many of you start with visual aura which then procedes to numbness in hand, arm, and face, mental confusion and then joy of joy the head splitting pain that we all know and hate. 9 years ago I made the decision along with my neurologist to go on 160 mg. Inderal LA 1td. It has helped to some degree but the side effects of the drugs suck. I have accepted my fate and try to control all the areas I can, but 3 years ago my daughter, now 16 had her first migraine. They have been unpredictable in her at best and recently changed to include the speech problems I encounter. She was scared to death and I was heartbroken that I have passed this horrible disease onto her. I am ashamed to say she handles her attacks much better then I do. I have such fear for her that she will end up like me, and so much guilt that they came from me that I dont know what to do. I can deal with my migraines, but knowing my daughter has them too is heartbreaking. Thanks for listening.

Tammy <Beaner719@aol.com>
Friday, August 17, 2007 at 11:15:08

Hi, I am new to the forum. I have suffered from migraines since age 40. I am now age 45. It was suspected that I had epilepsy at the time, but that was ruled out. Migraines run in my family and I have classic signs of migraine with aura...BUT...along with this I have involuntary body contractions and movement in my arms, legs, and head, that mimic a seizure. It is exhausting. It has worsened since my last concussion in March 07, I have been in hospital twice and I am finding my quality of life is lessening. Has anyone on this forum ever experienced this or have any information. I have been through scans, spinal taps, ecg's eeg's, etc. I know it is not pyschosymatic as one doctor tried to infer.



Kat <kathryn.h@sympatico.ca>
Wednesday, August 15, 2007 at 12:16:35

Migraines and stroke - a discomforting connection
Check out this article about how having aura migraines (which I do) can increase your chances for strokes. Not comforting, but informative - kate

kate <katie.gatto@gmail.com>
Thursday, August 9, 2007 at 18:03:04

I have suffered from migraines since I was 18. I am now 40 and they are worse now than ever before. My mother had them as well, but went through menopause and hasn't even had a hint of a headache since. I did think mine were hormonal, but now that they are almost an every day occurance, I wonder. My Neurologist thinks that they are "rebound" headaches from the Hydrocodone that I was taking. I am beginning to think that she could be correct. She had me quit cold turkey for an entire week and my head feels a little better and they are not as debilitating. I also experience neck and shoulder pain with the headaches. The other advise from my Dr. was to not have any frozen foods, lunch meat, peanuts, cheese with mold, red wine, or basically any junk or processed foods. She also told me that I should eat six times a day and keep hydrated. The eating habits are the hardest to change. There are not any convenience foods left on the list of approved foods for me to eat and with 3 kids it's tough to follow. Massage helps, but who can really afford that on a regular basis. Ironically, I am a massage therapist, but can only handle doing it part time, because of the debilitating headaches. I am now taking Midrin, which helps some,but I miss my Hydrocodone and Torodol. I will continue reading the entries. I find it helpful that I am not suffering alone.

JLo <mrsjlo@sbcglobal.net>
Thursday, August 9, 2007 at 16:24:34

Oh my gosh! What a blessing you all are. I have been "lurking about" on this website for months and just finally had to join in! What an amazing relief it is to know I am not alone in my migraine pain! Anyway, I just wanted you all to know that I am praying for you all here in Nebraska (gotta love this weather!) and hoping we all have pain-free days...

Carla Jo <arcpro@megavision.com>
Wednesday, August 1, 2007 at 10:04:16

I've suffered from migraines for a couple of years now. Over time, they've increased in frequency to where they are affecting my daily life. They make me afraid to venture too far from the house (what if I get a "sick" one and I'm days away from home?). I had a few bad days at work where I was so sick, they tried to "send me home", but I couldn't drive. I'd lost vision on my right side, and partial use of my left side, and along with nausea/vomiting and the pain, a 90 minute drive was not going to happen. I was at work until late, when my boss drove me home. :(

People in my family do get migraines, but so far, other than my mother and me, most only get one or two a year, instead of the sequencing intractable ones that we get. It does help to hear that we aren't alone, that we aren't "crazy" if Imitrex doesn't work (or in my case, I can't take any triptans), or if the blood pressure meds don't work. I am still pursuing treatment and something that works. I've gone from doctor to doctor, and found that there are doctors that won't even recognize that migraine exists, and say it's nothing more than a simple headache.

Hopefully, we'll all find something that works well to prevent or abort (or both) our migraines. One thing I do wish is that more people realized or understood what migraneurs can go through, and that there was more/better research. Perhaps one day.

However, it is a great comfort to know that we aren't alone. Thank you!

Rachael (LJ) <atriversend@comcast.net>
Thursday, July 26, 2007 at 19:23:51

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