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!

Like many others I was in tears when I stumbled onto this page late at night searching for answers. I thought I was going crazy from the pain that was consuming my life and I was so relieved when I realized it wasn't just me. I promised myself I wouldn�t post anything here until I had something positive to share. I do now. First though, please hear my story: I am a 37 year old single mom with girls, 10 & 12. Having migraines with aura since I was 12 has been a struggle that has progressed over the years, but always seemed to be somewhat manageable with triptans and preventatives. I don�t like to take the medications but if they help me get through life I figure I�ll do what is necessary to function. Something new has occurred over the past couple of years and the frequency and severity of my migraines has reached unbearable levels. Then in December of last year I began having this new, daily, absolutely frightening and unbearable chronic pain that I have had every minute of every day since. Over the years I have tried the following: Amitriptyline, Zonegran, Topamax for preventatives. Midrin and finoral for pain. Maxalt, Imitrex, Relpax, Axert and Zomig as my tripatns. Seems like everything worked for a short period of extended time then the soothing effects would wear off�so frustrating�I am so tired of trial and error�side effects�the monetary cost of treatments�the guilt of my health affecting my family and my life being on hold. I�ve tried biofeedback, regular massage, cut out all caffeine, and took all potential food triggers out of my diet. I got off birth control pills. I began exercising more regularly and am religious about it now. Most recently with my new daily pain onset I have had to resort to narcotics for the first time ever just to sleep at night. I had migraines with aura daily for weeks at a time that triptans wouldn�t budge. I was completely strung out on Topamax, which had worked two years prior. Completely desperate, I tried the DHE/decadron/magnesium intravenous treatment and was in the hospital for 7 days, infusions 24 hours a day, with no relief. It actually made me worse than ever and I ended up in the emergency room 3 days after my release. (this does work for 60% of people, worth a try to break a cycle)

After my hospitalization failed I was desperate with my career on the line since my pain was so bad I couldn�t even go to work much less drive my kids to school or make dinner. I felt like a complete failure in life and was embarrassed by my health. I looked into traditional Chinese medicine and started acupuncture in addition with the intake of prescribed herbs. The small amount of relief from this treatment was almost immediate and slowly progressed over time. I have been doing this for three months now and have found life to be much more bearable. I have had to be very patient and disciplined. I still have daily pain but it is nothing like it was before and I only get one migraine a week, if at all, that I can knock out with Axert during the day or Relplax at night. Occasionally, I take a Norco or Vicodin to get a break from the pain, but I limit myself to one a week. After waiting for months I saw a research professor/neurologist who specializes in migraines and he has referred me to a reputable pain clinic. �How depressing is that?� I thought when I was in tears in his office. I thought surely he would have an answer at least as to why. However, I feel that I am getting a handle on my pain and I�m not giving up until I combat it completely. I refuse to miss anymore work or give up my livelihood to this pain. As a matter of fact I was promoted at work at the beginning of this month. I am sticking with the acupuncture and also see a new migraine specialist in August. It has taken me 8 months on a waiting list to get in there. I try the pain management place next week.

Doctors know that migraine research hasn�t had the attention it deserves and are striving to come up with answers. They see spots on our MRI�s and say they are typical for migraine sufferers and tell us to play the wait and see what comes next game because they cannot or do not want to explain what the pictures really show. They simply don�t know what to do with many of our cases and feed us the latest and greatest drugs on the market through prescriptions. I feel I am blessed to be in a position where my pain and unexpected migraines are once again semi manageable and I am able to take limited medications. For several months this year I thought I was losing everything important to me. After what I have gone through and with the progress I feel I have achieved by not giving in I have a whole new perspective on things now. My point is don�t give up� keep searching for the right answer to your pain and make lifestyle changes if necessary. If your doctor isn�t working with you find a new one. I think they are as frustrated as we are. God bless all of you out there who deal with daily pain and live in fear of what lies ahead in the years to come. We will find answers and relief if we continue to have faith and do everything we can to manage it. The way I see it, it could be a whole lot worse. Enjoy every pain free moment you encounter and simply find something to be grateful for in the midst of the pain. Find comfort in knowing you are not alone and we have this wonderful site to escape to and be understood. Thank you to those who created it! It has truly been a Godsend for me.

Thank you for reading my thoughts.

Laura <laa2shea@yahoo.com>
Wednesday, July 25, 2007 at 22:53:35

Try acupunture. It cured me!

Ann <asnkutegirl@hotmail.com>
Wednesday, July 25, 2007 at 20:36:03

I am so glad to know I am not the only one living with daily headaches that turn into migraines all too often. It has gotten to the point that a good rare day is when I do NOT have a headache, but mostly I have just learned to live with and accept them...until recently...I cannot even live with them as they are getting to be so bad!

I do get the migraines with weather changes...every cold front...warm front...thunderstorm...snowstorm...Equinoxes...so yeah...almost every day is a new or continuing headache for me...

I was also in a car accident 18 years ago and tore ligaments in my neck, which are not helping now that I am getting older!

Imitrex works well for me...but with our insurance, it costs $9 per pill, and when I am taking sometimes 3 or 4 a week, I cannot afford that! So I save them for the REALLY REALLY bad ones!

A friend of mine told me that quite a few years ago, her daughter took 20mg of Corgard and 50mg of Pamelor and that helped tremendously!
Another friend told me she cannot take Imitrex but the Primrose Oil capsules work for her...
Soooo....I need to talk wiht my doctor, do some research and try to get these headaches under control so I can once again enjoy LIFE!!

Tambrey <groves@hickorytech.net>
Tuesday, July 24, 2007 at 11:03:42

Wow. great site. I am 36 and have had clasic migarines since I was 14. The aura, numbness in my hands and face, vommiting and confussion. When I was younger I would go into the ER when the would get to bad to bear and they would think I was on drugs. Like many others my headaches seemed more frequent after I had my daughter.

Any way, I live in Michgan and started going to the head pain an nueological institute in Ann Arbor and they started me on Migronal nasal spray, at that time it was a beta drug called DHE. DHE was what the ER would give me in combination with visterol or phenergan in an IV or Injection. I don't like the IV (burns) and can't stand the nasal spray. So they perscribed the DHE as an injection for me and taught me how to do them myself. It is amazing after the injection I can lay down for 30 min to an hour and feel sooooooooo much better. I'm still exahsted but the head pain and aura are almost non existant. I was also perscribed other pain med that I dont even take anymore.

Dawn.brown <ivesbrown@yahoo.com>
Thursday, July 19, 2007 at 10:30:59

I'm glad I've found this site. I helps me see that maybe my migraines aren't so bad after all.Some of you have had them way longer than I and more often. To you my heart goes out.
I'd like to know if anyone has had migraines beginning after a partial hysterectomy. I had one in 2000 and then in 2002 as I turned 40 they hit with a vengence! I went to a neurologist and he immediately started me on Topamax and Depakote. Well, I've been on Topamax all these years and have changed other meds quite often. I'm at the point of seeing side effects of Topamax that I want to come off of it. I can't seem to find food triggers; most of mine are stress and did seem to be sleep patterns. Got the latter under control and still no better. I'm seeing a chiro and massage therapist--makes me feel better for a while but not healed. I'm looking into a naturopathic/MD and hoping for the best. Anyone tried this route before?
As everyone else has said and I agree--May a cure be found--this is really painful and our families do get tired of us being out of commission. I have 17 and 18 yr olds. They need me as much now as they did when they were little.
Thanks for reading/listening

S Turner <sctjr@bellsouth.net>
Monday, July 2, 2007 at 13:15:28

I like the others is very grateful to have this site. It was sent by my GF who doesn't know much about them and thought this would help.

I started suffering with MG headaches from under the age of 10yrs. my grandmother suffered from then so she knew what they were. In those days they called them sick headaches because they would get so bad that you'd throw-up with them. She would give me a BC Powder (I hope you heardachers know what this is) a seven-up (not sprite) and queeze a lemon over ice to sip slowly. This was and still is for one of my small headaches the cure to beat all.

However, as I have gotten older they have been 10 times worse. I have lost count of the emergency visits. They used to give me demoral until Imitrex came out (and which I swear by) but now they have torodol (which only helps if it's under a 3 I think) and they also have Midrin which I am not sure about. My neurologist says it's all genetics, simple old DNA you can trace it back to a mother or grandmother. They have a list of triggers but he also says it's not bullet proof at all, by that I mean you could eat everything on the list and not get a headache, and turn around and eat something you've been eating for years and go into a full blown MG.

I have also noticed that the onset of my migraines are shorter and much, much worst with my age. I used to be able to feel one coming and treat it. Now from the time I feel the slightest pain by the time I get prepared to relax and treat it, I am at a full blown 5 and rushing up. My last visit to the hospital for scary, they gave me phenergan and a new shot for migraines (didn't work at all), then gave me another shot of phenergan and torodol, and it only worked good enough for someone to come and pick me up, they gave me a new pill call Axert to take in one hour, and another in a second hour if that didn't work!!! That's how bad they have gotten. They gave me a prescription for Midgrin (?) which you take one every hour up to 5 until the headache is gone, I have only had to take two so far..... it's very scary how far these Migraines can go, my bloodpressure has now become an issue as well, and I am not over weight, and healthy eater, regular exercise, and still have these issues, I believe the migraines are the cause for my bloodpressure rising, until that got to a place where the hospital was the only place to go for treatment, I never had high bloodpressure, and it goes down when the episode is over.

SO my sisters I feel your pain and I pray they come up with a reason a rhyme and a quicker pain cure.


Shae <LMorganGoddess>
Monday, July 2, 2007 at 12:36:12

I can't believe there are so many people out there, that suffer from migraines like myself. My severe headaches didn't start until after my first child was born. He was born 14yrs ago, these migraines have been around a long time. Lately they are getting unbearable. I have just gone to see a neurologist, and been put on medication that has not helped at all. Hydrocodeine seems to be the only pain relief I have found to date.My family members do not suffer from these intense headaches,therefore they do not completely understand how I feel. Thank Goodness I have found this website!!!

Maria <mariascheinerfre@bellsouth.net>
Sunday, July 1, 2007 at 23:23:39

I would like to thank you for this website. I have learned a couple of things, that I will be asking my Dr. about.

I have suffered from age 9. Though my younger years my parents would give me aspirin, and send me to bed. Back then I would have 1 or 2 a year. I am now 44. I was having daily migraines in the 3-4 range. The bad ones (8-10) are coming closer together now and in higher intensities, and lasting longer.

The last one I had lasted 2 months. This peaked last week with a MEGA-Migraine. Up to this point, I thought I knew what a 10 was...
This one went well beyond anything I have ever had.

I ended up in the ER for the second time in a month. This time they did something different...They injected me with Benadryl and Comprozine through an IV. This is not a fun experience, as the drugs make you feel like you are going to die. :(
Your heart slows down to barely registering and breathing is very labored. After about 10mins you go to sleep...
I slept for what seemed to be another 10 mins., It was actually 3hours.

The Migraine was now a 1. It stayed at a 1 for the rest of the night. I woke in the morning and took 1/2 a Vicodin and it went to 0!!!!
It has been years since I have had a 0 day.
That night it crept up to about a 2, I took a dose of Benadryl liquid before bed...Next morning, back to a 1. I have been taking this every night before bed, and have been able to keep it under a 3 for a week now...This is the longest anything has worked...I don't know if it will help anyone else, but what have you got to lose...

Chuck <chuckezn@yahoo.com>
Friday, June 29, 2007 at 23:58:48

My 26 year old daughter has suffered from migraines since she was 7. They seem to be getting worse and more often. She has tried acupuncture, hipnosis, all kinds of medications from the simple ones to opioids, actiq, fentanyl, Patches, injections in her brain, demoral. Nothing makes her pain free some combinations lower the pain. But on a scale of 1-10, Ten being the worst, she is never better than a 3. Some headaches are 13, crying and screaming for 3 to 5 days with not relief. She also get paralysis either a leg, or arm sometime face and eye.
So far these have cleared between headaches.

We did investigate one thing that is a PFO (Patent Foramen Ovale) an opening that occurs naturally but should close before birth. The Heart doctor did a simple test in the office to determine if she could have a PFO. If this test is positive then they do an angiogram and implant a umbrella closure.
Quote from Cleveland Clinic - Heart and Vascular Institute
"Migraine headache and PFO: Migraine headaches are more common in patients with PFO. While it seems as though closure of PFO results in improvement of migraine symptoms, larger studies are needed to confirm this finding."

I am sharing this with you because my daughter did not have a PFO but my Friend who suffered as much as my daughter did. They did the unbrella closure in an outpatient proceedure and he is now medication free after suffering for 36 years.

I hope this will help some of you. The others, any Ideas on what will help my daughter.

Kathy <kwest@bonneville.com>
Wednesday, June 27, 2007 at 16:38:03

I am so happy to have found this site! I've been suffering from migraines since I was 12, although I believe I had one at 9. My teen age life, my mom refused to take me to the doctor for them. She kept saying there was nothing that could be done about them. She didn't understand what a migraine was at all. She would get head aches, might have even gotten a migraine here or there, but doesn't, even to this day, understand the hell that is chronic migrain suffering.

I would miss softball games, marching band competitions, days from school you name it, because of the wretched things.

When I hit college, I finally took myself to the doctor and low and behold, he gave me Midrin and Hyrdocodone. I was thrilled. Hated the Midrin, but I was thrilled that something could be done. I was also on the pill as well. I have always gotten the "classic" migraine with aura. I had warning the migraiens were coming so I knew when to run for cover. Eventually we decided to take me off the pill and the migraines subsided for a while. Needless to say that during the pill times, my retail manager of a boss, was NOT compassionate and it was very difficult to work and be a full-time student.

During my 3 pregnancies... 2 migraines total. Life was wonderful. After my last baby was born they started to pick back up a bit, maybe 1 a month. I could handle that.
I didn't have any abortive meds, just Darvacet at the time since I was breast feeding.

When I started working again, they hit with a vengence, at least to me. 3-4 a month. I went on Imitrex and Fioricet. I'm also on Wellbutrin for Depression.

In November 2006, I started getting 3-4 migraines a week with at least 2 a month sending me home to hide under the covers. Not good.

I switched jobs in March of 2007. Started getting migraines every day.

My life has changed ever since May 17. I had an attack of double vision and have had vertigo ever since. It's like a never ending Tilt-a-Whirl Ride to this very day. On May 29, I had another double vision attack that landed me in the ER because I swore to God above I was having a stroke and thought I was dying. My husband, who never shows fear, was scared to death. I barely remember signing into the the ER.

I have no food triggers. My cycle can trigger it and I am a walking barometer. Lovely!

Now, I'm on 75mg of Topamax, 10mg Maxalt as an abortive, Fioricet for pain (which I want switched out), 5 MG Valium to stop the sping (temporarily assigned by my shrink) and my Wellbutrin 300mg a day. I see an ENT on July 11 for vestibular testing to rule out vestibular damage. The neurologist has all ready performed a nocontrast MRI which returned normal. I follow-up with my neurologist on July 12 to review the results of the ENT testing.

Part of me is praying there's an abnormality on the vestibular testing that will prompt more neurological testing to dig deeper.

I feel like I'm going crazy from it all. In the midst of my now severe deep depression, I do have hope that I will find out something and find a way to treat it. My family is tired of hearing about it. I'm tried of talking about it. I want it fixed or at least a label with a course of action that works slapped on to it. That I can work with. Not knowing why things have changed all of a sudden is driving me bonkers!

Chrissy <Chrissysw(at)comcastdotnet>
Thursday, June 28, 2007 at 22:13:44

I feel so blessed to find this website. I have been a migraine sufferer since I was 12. At first I thought they were just headaches that aspirin didn't help. I learned at an early age how to deal with it by writing poetry and drawing pictures. I hid these from my parents, because they thought these pictures were strange and couldn't understand my dark side of the world. Not until I was an adult did I understand my pictures. It was my way of expressing my pain, emotionally and physically. I stopped the writing and drawing because when my mom found them as a senior in high-school, she took them and burned them thinking that they were morbid. Little did she know 20+ years later that these migraines would control my life not me. I have been to neurologists, environmental doctors, accupuncture, to just name a few. Needless to say, I have probably been on every type of medication availble for the migraine patient, with each doctor giving me the "newest drug on the market that will releive the frequency and pain. I go to bed every night in pain, taking only a sleeping pill to let me sleep through the pain. I dread the thought of waking up the next day, knowing that I will be struggling throughout the day to put my thoughts in order and hide the pain that you can see in my face. My little girl who is 4 tonight just asked me, Mommy, why is your eye always half open? My son 15, just locks himself in his room trying to avoid me knowing that the pain is taking over. If it was not for my love of my kids, I really don't think I could honestly say that life has so much to offer. I guess right now I am venting in desperation for someone to understand my pain. After a divorce (three years ago), I now am going to be forced to go back to work after not working for 10 years. I just landed the ideal job, and after only 1 month was let go, because I could not hide my migraines. Does any one have any suggestions how I can work ( I was in sales )
when my migraines average about 3-4 times a week with a constant headache daily? My attorney says that I will have to put my doctors on the stand to fight for disability and more allimony. The courts said that I was capable of making a minimum of 50K a year, but I can't hold a job? In 6 months I was hired in dream sales positions only to be let go in both. I am now where I have memory lapses and focus problems because of the pain? I need advice from any one out there who has a hard time holding down a job. I hate it so much because no one understands. My last boss said, Just go to the doctors and get rid of it, I can't afford to have anyone miss any work. I cannot work in an office either, because the lights trigger my migraines and make them worst.

Is diability an option? I have two kids who are great, and all I want is for them to be proud of their mom.

cynthia <cprlich@yahoo.com>
Tuesday, June 12, 2007 at 22:25:59

Its midnight on the nose and I have just read the last email entry I finally took the step of searching for an online support group.I am a counselor thus asking for help is difficult I thought I would start here and see how it goes. I was so excited to have this online group for sometimes you feel alone and feel as if you are always sick to others.They try to understand but sometimes I just wish I could snap my head off and trade with them for a few minutes just so they can truly understand what it feels like. I have suffered for almost 5 years now. I have tried chiro's, physio,acupuncture, natural pain killers, zomig, percocet, oxycotin, fentanyl and now I am on oxy-ir and a fentanyl patch that I change every three days. It only gives a numbing sensation but when it is really bad nothing seems to work. I close all the lights and put ear plugs in and feel as if I have to drug myself just to rest. I have two small girls (5 and 6) and my Husband has been really supportive but just tonight he told me that he is finding it really hard which gave me the guts to seek this sight out. I just took 2 10 mg of oxy-ir which is an immediate release pain killer which finally numbs me somewhat. I thank you all for sharing your stories its the first time in 5 years that I have not felt so alone with this. I am crying right now out of relief and frustration and pray that one day we can all find some relief for this exstreamly dibilitating pain.I sometimes feel that if it were not for my children and family I do not think I could go on any longer its just too hard to deal with so often. Triggers happen where I see small black dots and I get very nauseated and know what I am in for. Sometimes it lasts only a couple of hours the longest was 5 days and I could not walk for 6 days, for I have lost the curve in my neck from the C1-c4 vertabrae which is why I suffer migranes. My specialist says that walking for me is like four wheel driving with no shocks. sorry I am babbling I feel just so thankful others know what I am experiencing. Well I bid you all Good night and Good luck eh!

juanita canadian <juanitacat@yahoo.ca>
Tuesday, June 5, 2007 at 02:23:34

hi all,
i've suffered from migraines since i was at least 7, and i am 35 now. today, it took me 4 hours to get my imitrex script filled. one pharmacy couldn't file my insurance, and one had to take an hour and a half to do it. meanwhile, i am miserable. i guess i should have gotten it filled earlier, oh well. and then to top it off, even with insurance, it cost 38 dollars for 2 imitrex tablets.
my head is still killing me, i'm just too pissed off to go to sleep. oh well.
and i try to avoid the e.r. at all costs. they just act like you want narcotics. i hate them. demerol makes me puke, percocet makes me sick. morphine causes headaches. toradol works really well, just be careful, since there can be some stomach complications. i took fioricet once, i swore i wouldn't ever do that again. usually i take motrin like candy, phenergan for the nausea, and go hide in a dark room
oh and i found good results with head-on. i guess it cools my head enough, plus it is a lot less messy than a wet cloth.
anyway, thanks for letting me vent.

tracey <tranurse@yahoo.com>
Saturday, June 2, 2007 at 20:42:21

I've been a headache suferer for the last 20 years, but they've never been so bad as they are now that I'm 36 years old. I suffer daily chronic headaches with migraine/aura at least 3 times a week. It seems that, as a male I'm in the minority when it comes to chronic headaches, and that's a real problem when it comes to getting any sympathy from doctors, family, friends etc. I've even had one doctor tell me to "tough it out". 10 doctors later, I've finally found one who listens.
I've done alot of experimenting with medications trying to get my headaches under control, and have learned a bit along the way. Mostly, I've noticed that headaches can have one of five principal causes; Blood, nerves, tension, rebound, and what I call false trauma. Each of which is treatable with a different medication.
People who suffer headaches related to their blood generally find themselves on prescripts like Propanlol and Nadolol. The cause of the blood problems can range from high blood pressure to menstration issues.
Nerve pain is the second and is treatable with really expensive medications like Gabapentin and other GABA analogs. This type of headache usually follows some trauma like a whiplash.
Tension headaches are the most common. Some people are more susceptible to tension than others. Meds like Amitriptyline, or desipramine, among other tricyclic antidepressant are great since they can be taken once a day, before bed, and have a 12-24 hour halflife. Not to mention the more you take the better they work, and there is no risk of rebound.
Rebound headaches are self explanitory. Most pain meds contain parcetamol. The Govt. regulations require this chemical to be added to narcotic pain meds to prevent 'abuse'. How? by causing headaches.
Finally there's 'false trauma'. This can be caused by an injury that leaves no lasting damage, but a headache signals to the sufferer that something is wrong. Kind of like when someone kicks your car and your alarm blares till your battery dies. Nothing shows on x-rays, ct-scans, blood tests, etc, but the headache is consistant and painful. This is the headache I suffer. It followed a motorcycle accident I had in 1986, and has been getting worse since.
That's about it. Oh yeah...As for migraines; my god's name is Maxalt.

Tom V. <antagonizer@hotmail.com>
Thursday, May 31, 2007 at 01:16:25

I am comforted by all your comments. For years I thought I was suffering with sinus infections but I would get results back that showed I had a polyp, but nothing that would be causing this much pain. My ENT finally stated that sinus infections do not cause 10/10 pain so he sent me to the neurologist. I was fortunate to get a young, but also a good one. He is the first specialist that I have seen that is open to alternative methods. I can tell you that although he has not healed me (yet), he has made a huge difference in the quality of my life. He recommended I start taking Magnesium. I take 225 mg twice a day on an empty stomach or with my B-vitamins. After just a few days I noticed the cramping and neck pain that came with my migraines was gone. Seriously, that was half the battle. My migraines still come twice a month, but last only a day or two instead of the 72-96 hours. I have only been on it for a few months but it has helped dramatically. If you decide to try it, please ask your doctor before taking really high doses. If you do not have kidney disease, it should be okay to take 400 mg per day, but make sure that you do it on an emty stomach and that you take an absorbable type such as magnesium citrate as many types can cause loose stools to say the least. There is a great book titled "The Miracle of Magnesium" by Carolyn Dean that may be of help to at least some of you. It states that migraines may be in part a depletion of magnesium.

Kristine <basilnthym@yahoo.com>
Tuesday, May 29, 2007 at 16:07:39

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