migraine and disability

Hi Grammy, of course I've tried chiropractic.  Us migrainers have tried EVERYTHING, right?  Cuz it's not just a headache!  Unfortunately, I cannot afford on-going out of pocket chiropractic.

Cyndie, thank you for taking the time to reply.  Gosh, I had no idea it was that difficult.  I don't know how to live and work with daily pain.  Meds are not working for me and I have co-morbid depression.  I pray that you stay well.  Keep up the good fight. 

Thank you for your reply.  I often wonder how people like us who have these "invisible disabilities" are supposed to support ourselves.  I pray unceassingly for a miracle.  A question for you. With my history, you'd think I could get a "headache specialist."  My neuros have too big of an ego and just want to medicate me -- even put me back on the same meds.  Do you have any suggestions as to how to get to a headache specialist with an HMO?

BTW, how did your procedure go?  When will they have the results?

K.

Hi there,

  I've been to a couple headache specialist.....I'd rather not comment on them at the moment...Because they were treating me for migrains.....When I didn't have migrains...But they were 100 % sure I had migrains....They are usually Neurologist with a speciality with headaches...I went to the Cleveland Clinic and saw one there...I live in Ohio, And I;m about 3 hour drive away,,And heard (as we all have ) how Cleveland Clinic is SO good...I tried to stay for 5 months ,,All I got was a run around..Gained 30 pounds on elavil and nortrypaline...And had horrible nightmares from the junk.....And all he would do is keep upping it....And my headpain was just as horrible as it was as before.....I've been to a couple...But I'm not good with the old anti-depressant meds and 25 different seizure meds pluss all the triptans , plus the bp meds...  But I geuss it works for peeps with migrains, I don't know,, If they said thats what I have , It never ever worked for me...My pain Doc keeps saying I have continous migrainous,, My Neurosurgeon says its from the nerve and aneurysm..I just know, I hurt like ........  Hugs, Cindy

I take morphine and methadone and topamax and ativan..BPmeds..Of all the seizure meds,,Topamax was the onlt one that helped at all, and it only helps with the jabbing and jolting pains that I get in my left eye- ( feels like someone is pounding a railroad tie in it ) My aneurysm is behind my left eye...I use to get these pains at first 5-10 times a day..then it became all the time-365...Allways the same area. Annie location...Why they (neurosurgeon ) says it's the trigeminal nerve..That is damaged...And when I had surgery and when they was placing the stent in the artery,,,The pain from them messing with the artery and trying to place the stent..Was AGONY...I was screaming, crying, It was the most horrible pain I ever felt !!!  They did this via angiogram...

And I was wide awake...But the stent was in the artery and touching the 5th cranial nerve, (through the artery ) that is how close the artery and nerve is..I know I scared everyone in that room, but I could not control myself,,The pain was horrendous..Why we know it's nerve related...I do not want to go through that ever again...I then had a stoke...I p[assed a clot, It was just a bad day !! But they did save my life..That s why I'm inoperable..

They will not touch me again..I think I scared them all,, What I had is not suppose to be painful at all,, maybe a little hotness when they put in the dye..But my head felt explosive !! Without meds, thats what it feels like..Only behind my left eye (annie location ) My aneurysm is 1 centimeter by 6.8 millimeters..Very round ..It's the whole artery that is effected..Not a bubble...on the artery..Another reason it's inoperable..But it fills up with blood and then it pulsates with my heartbeat. They seen it on angiogram..So it sometimes is larger..

.I've had this monster for so long, Wish,I never knew I had it sometimes...Why I take the ativan...Helps with my nerves...Knowing you got a time bomb in your head and no one can help you...Really affects your nerves..Or it does mine !! But I don't know why my pain Doc says continouis migrains, I really don't care. As long as he takes care of me,

 But I can't take triptans..I tried them once and they caused all my arteries / veins to enlarge . My neck , both sides looked horrible, The arteries were all swollen..And they were afraid that was happening in my brain too, And it did not help at all with my pain..I took them one time, then that happened and Docs said for me to never ever take them again..Could cause the aneurysm to burst ...HMMMMmmmmm.. O.K I just wrote a book..If your still reading,,,,Hugs, and I hope you have a pain free day ! Cindy

Post Edited (Cyndie) : 10/15/2006 7:16:10 AM (GMT-6)

Hey Hopefulmigrainer,

Welcome to the wonderful world of disability nightmares.  I live in the good 'ole US of A., and getting on Social Security Disability is a never-ending paperwork pain in the rear.  I've had migraines since elementary school, multiple back problems, and suffer from depression, anxiety and panic attacks.  I've found that the best way to get through the disability system is to snow them with documentation.  Luckily, I have documentation on my migraines since 1978, five years after I started getting the attacks in elementary school.  I also have years of documentation on my depression, panic and anxiety.  My disability paperwork took forever to fill out, but luckily I had so much documentation, I think I just got approve on the first try because they got sick of all the paperwork.  Disability payments are based on your employment income, with some weird formula, but luckily I had a pretty good salary when I had to stop working in my chosen career.  Unfortunately, my monthly payments aren't enough to live on.  Since I got divorced shortly after I was unable to work anymore, I have to live off my disability with the relatively frequent subsidy from my parents.  I couldn't even do any of those "work from home" jobs you see advertised all over the place.  I'm in too much pain most of the time to be the least bit productive.  I can't even manage to keep my townhouse clean.  The downstairs is OK, but only my dad is allowed upstairs.  He drives me to most anywhere I need to go, does my laundry for me, takes out the trash, and holds my hand when I'm really in pain.  I'd be in real trouble if I didn't have such supportive parents.  My mom does what she can, but my situation really puts her in a state. 

I'm only 41, and it's hard to see much quality of life for me in the future.  My friends have all abandoned me, and pretty much my only contact with the outside world is via the computer.  My dad had to buy me a new laptop a couple of weeks ago, as my last one was on its last legs for several months.  I thought I would lose my mind because we just could not keep it up and running.  I made a trip last week to a yearly doll convention I attend, which is the only thing I have to look forward to on a regular basis.  Of course, the day of my flight home, I spent it with a raging migraine, and made a stop at the ER on the way home.  Sorry, I digress.

Anyway, if you are going to go through the disability process, my best advise is to snow the powers that be with paperwork.  The more documentation the better.  I know I'm lucky since I got approved on the first try, but hang in there until you get what you rightly have earned.

Much luck, and keep us informed.

Leigh Ann