What’s a Headache or Migraine Sufferer to Do without Support?

I really am finding this forum a great place and learning about resources I never new were available.  I may really have to consider joining something like this.... there are so many things, and difficult situations that no one can tell you how to deal with  - like losing friends because they just don't understand and get their feeling hurt because you cancel plans and you are just not who THEY want you to be .... thanks for the share I will probably find this helpful at some point - just learning my way around here!

Shannon Terry 

My husband had a similar onset of headaches...every time he stood up it hurt really bad. LONG story short, it was determined that he was leaking cerebral-spinal fluid (CSF) from his head through his mastoid bone. Once the mastoid was surgically corrected the headaches ceased. It is the same thing women often get after epidurals, but the leak is in the lower back area. Just a thought!

I have suffered with "Ocular Migraines" (with out pain) since I was in my early 20's. Several months ago (April), I had an episode where I saw a flash (like someone had taken my picture using a flash). Most of the time in the past, it usually cleared up in 20 minutes or so. This has remained and has caused a blind spot in my left eye. I have gone to my eye doctor who said it was caused by an "Ocular Migraine". The Doctor also said it was rare. But he had no answers as to rather it would be pernament or if it would get worse.Has anyone heard of or experenced this?   Pam Matherly  

Hi. I have been suffering migraines since I was 11.  I'm now 22, and they've only gotten worse and more frequent.  Sometimes they're so unbearable, that I contemplate suicide.  I get them so bad I will lose the ability to speak correctly, my words will slurr.  I know I am getting a migraine when I get an aura of what looks like little glittery floating circles and zig-zags and I lose sight in one eye, usually the left.  About 30 minutes later I have a numd hand, and tingling sensations, and the worst pain one could ever imagine.. I have been to the hospital because of being doubled over in pain to the point that I passed out in the hospital parking lot.  They overdosed me on morphine the first time, and I was sick for 3 months.  I was on IMITREX for a while, but a new neurologist confirmed I was having complicated migraines and was not to take IMITREX for those kinds of migraines. I was on a preventive med. NEURONTIN for 3 years, and it up and stopped working for me.  I have been addicted to anything and everything you name it:  Excedrin, Aleve, Advil, Percocet, Oxycodon,everything.  I can take advil and aleve if I get a migraine but that's it.  I take the aleve b/c it works most of the time, but if I had it 3 times in the week I hafta switch to advil.  Sometimes, I think I'm going to go crazy.  When I have a migraine for a week straight and nothings making it go away and my fiance says he knows I have a bad headache.  I wanna scream b/c it's more than he can ever know.  It's torture.  I can't do a lot of things with my friends, and I can't eat or drink a lot of trigger things. ( such as things with monosodium glutamate and raspberries, pomegranite, etc.)  I'm relieved to have read other people feel the same way, but this life sucks a lot of the time.  I should be happy planning a wedding and instead I'm lying in bed suffering. 

I have been suffering from Migrain headaches since 1974 when I was involved in a auto accident - hit from behind by a drunk driver and my head hit the windshield.  No seat belts or restraints of any kind back then in automobiles. The headaches are more frequent now and last longer.

My daughter, 14 years old, has been getting what I think are menstraul migraines for over a year now they last from 3-5 days in the same two week period each month and she becomes sick, dizzy, weak, sleeps a lot pupils very dilated and usually ends up with a whopping headache but not always.  Because she doesn't always get a headache but has a hyper sleep affect the neurologist I took her to thought she had a sleep disorder not migraine.  She's had a sleep study, MRI, and EEG all normal.  His suggestion was a med that would wake her up from her hyper sleep state.  Her pediatrician put her on birth control pills that seemed to help for a few months but then stopped working.  She wants her to see another neurologist.  We have also been seeing a naturopath, she has been off birth control pills for three months so a hormone panel could be run.  She is also having saliva samples from an 18 hour time period analyzed for adrenal hormones.  As soon as I get the results from the labs I will take her to another neurologist but don't want to get sent down the wrong path again.  This is really affecting her schooling.  She is a freshman in highschool this year and they are very strict about homework and she is only allowed 12 absences per year.  Any suggestions out there???? We live in Washington State about 25 miles east of Seattle.

Hi! This is from Carol in Omaha, NE.  I have had migraines for several years - I'd say over 30 years at minimum, probably closer to 40 years(!).  My migraines were pretty well controlled the past few years by Topamax, then last spring, my neurologist added Depakote as another preventitive.  I'd been taking Relpax for relief of the migraines as well.  I hadn't had to take the Relpax very often, as over the counter meds seemed to be helping until the headaches seemed to start coming daily, and then they were increasingly getting worse with more intense pain as well.  I got renewed prescriptions for Relpax and also some samples.  This did nothing for me as I continued to get the headaches and soon the Relpax wasn't working to get rid of the headaches!   They were unbearable, and I was getting sick to my stomach and started seeing flashing lights which I didn't know were auras.  I went home a bit early from work on a Monday, missed work on Tuesday with the migraine and on Wednesday morning, I woke up with the same bad headache and terrible white lights and then colored lights and then I couldn't see - it was like gray areas covering my eyes.  At first I could see some shadows of things - enough to get my purse together & make a phone call to a neighbor across the street & then walk over there so I could get a ride to the hospital, but by the time I got there I was almost completely blind.. it was like dark shadows only.  We got to the hospital and I was immediately seen by the doctors - I do not remember any of this - as I was pretty well confused by this time - I guess I was able to answer their questions, thankfully! They did testing on me and then I had a grand mal seizure and then more tests & finally determined I had PRES Syndome.  I don't remember anything from admission & woke up sometime Thursday night from the coma they induced - they put me on a respirator as well - this could have been fatal for me - and I was told it was all because of a combination of my migranes and high blood pressure which had been normal or below normal for the past year!!!  This scared the wits out of me!!

  I talk to my siblings and they don't know what to say to me because they have never had headaches like mine - they admit.  Also, coworkers say "I'm glad I don't have those!", and then I wonder if they even believe me when I have the headaches - which I should not have to think those thoughts, either!!  I don't need those doubts to crowd my mind and give me stress to bring on more headaches!!

  Thank you for your time!  This looks like a good place and I think I will be back!

Carol