migraine and disability

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hopefulmigrainer
Veteran Member


Date Joined Oct 2006
Total Posts : 902
   Posted 10/10/2006 7:52 PM (GMT -7)   
Hi everyone,  I just signed up today...have been reading comments for weeks now and am amazed to discover how many people are actually out there just like me.  Unfortunately, I am losing hope and feeling very discouraged because I lost a job and a marriage recently mostly due to my migraines (corporate world and selfish husband).  When I couldn't get through the day at at temp job under the flourescent lights, I went to my MD to put me on disability.  I can honestly say, I thought that we were going to get to the bottom of this and I would be on my way but I'm just as confused now as ever and still have chronic (near daily) migraines with neck/shoulder pain & tension.  A little background: My migraines started in my early 30's.  Since I had a whiplash accident around that time, I have not been able to rule out if my neck is the major trigger.  Surgery is my choice and from my doctors lips "no guarantee" and "statistics show less than 50% are cured."  I definitely get migraine and have driven myself crazy trying to figure out what my triggers are.  Know triggers are stress, perfume/strong odors, barometric pressure, heat & humidity, chocolate, alcohol, fatigue.  I have tried preventatives:  Elavil, Topamax (50mg) and Norvasc.  None worked.  Now I have a new neurologist who wants me to go on Topamax again and get to 100mg.  I hate pills, am very sensitive to all medications.  I am presently taking Welbutrin and Lexapro at small doses to control depression. 
 
I would like to hear from all of you but especially those of you have had to be on disability for this condition.  I have 6 weeks left and then I would need to apply for government disability.  This is not an option for me as I am self-supporting but would like to hear from all of you about how you make it work - whether working or on disability.  Thank you for listening.

Grammyto2
New Member


Date Joined Oct 2006
Total Posts : 6
   Posted 10/11/2006 7:17 PM (GMT -7)   
Have you tried a chiropractor? If you've had a neck injury they can be especially helpful.

Cyndie
Regular Member


Date Joined Jun 2006
Total Posts : 120
   Posted 10/12/2006 8:39 AM (GMT -7)   

Hi there tongue

  I've had head pain for allmost 6 years (will be 6 years Jan 3 )..Anyway , I just got my disability after fighting for it for over 5 years....It was a very long fight with alot of denials and appealls...I WEnt to the ALJ court after waiting for it (2 years ) He denied me. Then I Appealled his decision..Then it went to Federal Courts...Where they said it should have never left the ALJ court Denied,,,,"??????   So finnally after 5 years..I was fully fav, By the Federal Gov, and it went back 5 years...It was a long hard wait....And my disability is for disabling pain related to head pain due to a inoperable brain aneurysm...It can be done, but it may take some time...If you beleive you are disabled and can not work ANY job..........Go for it....And Appeall , if you have too and Appeal again and again.....Sometimes they do not take head pain seriuosly But if they had to live with a 5 year severe head ache,,They would change there mind...

I use to work as a nurse...My dream job,,,That's all I wanted to be...A mommy and a nurse..Wished I still could nurse, I loved waking up every day going to my job... sad   But Now I'm now 43 and afraid This aneurysm will never be operable or it will burst before they find some way to fix it....Good luck in what you do, Hugs, Cindy


hopefulmigrainer
Veteran Member


Date Joined Oct 2006
Total Posts : 902
   Posted 10/13/2006 6:35 PM (GMT -7)   

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. 


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/14/2006 2:13 AM (GMT -7)   
Hi Hopefulmigrainer,

Welcome to Healing Well. I am sorry you are suffering so. I can sympathise with you as I am twice divorced, neither husband could cope with the heads, even my family (some of whome have migraine too) struggle. I am on my own with my teen son.

Here in the UK it is next to impossible to go on disability for headache of any sort, and it has to be extremely severe. For instance it would require that you need most things done for you and that you could not cook for yourself!! As you well know there are some days just like that but others you are ok so it doesn't work!

This is a wretched disease to live with and it can be a constant fight against the pain and exhaustion, I know I have had it for 30 plus years!! You have a family here now that understand what you are going through and are here to support you, please feel free to vent at any time when things get you down. Chin up, you will be surprised at how strong you are when you have got folks around who understand what is happening to you!!

By the way, I am a Manager of a Pre-School, I share this job with a co-manager because of the heads so I know I am very blessed!!!

I still being assessed by a Neurologist who is a Headache Specialist and it has been a long hard fight to get here, but has been well worth it. If you are not satisfied with the way the treatment is working for you go back to your Neuro, again and again if necessary - I did!!! Ask to be referred to a Neuro who is a Headache Specialist!

Please let us know how you get on.

take care

Ann

hopefulmigrainer
Veteran Member


Date Joined Oct 2006
Total Posts : 902
   Posted 10/14/2006 1:26 PM (GMT -7)   
Hi Anne,
 
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.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/14/2006 2:14 PM (GMT -7)   
Hi hopefulmigrainer,

I don't see why you should not be referred to a Headache Specialist, in the UK it would be either a GP or the Neuro that could refer, unfortunately I do not know the protocols in the US to comment. You have a history of migraine that should be enough irrespective of where you live - one side of the pond or the other!!

As for me I am going to post about my experience seperately, but thanks for asking.

take care

Ann

Cyndie
Regular Member


Date Joined Jun 2006
Total Posts : 120
   Posted 10/14/2006 6:51 PM (GMT -7)   

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


hopefulmigrainer
Veteran Member


Date Joined Oct 2006
Total Posts : 902
   Posted 10/14/2006 7:14 PM (GMT -7)   
Cyndie, what meds do you take now?  Is anything working at all?  My biggest fear is that I will be like you -- one of the poor unfortunate souls who cannot find a med that will help.  I had to stop the Topamax.  Firstly, I was diagnosed with "glaucoma suspect" and my neuro just ignored this. Secondly, Topamax increases my anxiety and causes insomnia.  Is the anurysism your main trigger?  I hope their something that they can do to help you.  My heart breaks for people who suffer with this wretched disease!

Cyndie
Regular Member


Date Joined Jun 2006
Total Posts : 120
   Posted 10/15/2006 6:13 AM (GMT -7)   
Hi,
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)


hopefulmigrainer
Veteran Member


Date Joined Oct 2006
Total Posts : 902
   Posted 10/15/2006 7:55 AM (GMT -7)   

Dear Cyndie, You have been through so much.  I can't imagine the pain your suffered during that procedure.  I have 2 bad discs in my neck and they have suggested some type of discogram where they shoot die into your discs while you are awake with no pain meds.  My Mom had it done and said it was excruciating.  I'm glad that the Topamax is helping with the continurous migraines.  I guess all that we can do is learn to cope and manage.  I wish you the very best.K.


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 10/17/2006 4:48 AM (GMT -7)   

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 cool


"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


Cyndie
Regular Member


Date Joined Jun 2006
Total Posts : 120
   Posted 10/17/2006 7:22 AM (GMT -7)   
I have to agree with Leigh ann, The better documentation you have about your illness the better you will be with getting disability.  I think that is one reason it took so long for me..All the docs kept saying migrains for years...Then when I went to Cincinnatti, Ohio, To the University, Had a great Doc, Doc, Yay..DX me with TRigeminal neuralgia from the anuerysm and that I needed pain management for the rest of my life..And needed surgery consult With Doc, Ringer, Which I had, and stroked out, ( still have the aneurysm ) they started to give me some consideration...By this time, I had 4 years of documented pain and treatment...And a year later got the disability..Why you should never quit...Yes, I had to Appeall a couple of times, But I knew I couldn't work, Like Leigh, I only have family, all my friends have left me, they never call anymore, or come over..Since my illness..And I was full of friends and had partys a few times a year and invited many..But I know . What is really important --family is...And that I have,,a great bunch of...I'm lucky there...My daughter helps me alot. Cause I can't do what I use to..I do try to fix a dinner every night..But sometimes I can't do that...But I know I would not want to live without my computer,,It is my outside world connection also..HUgs, Cindy

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/17/2006 8:14 AM (GMT -7)   
Cyndie,

I really feel for you with the problems you have, and I know Trigeminal Neuralgia is excruciating, and as for the Aneurysm, I take my hat off to you with the way you are coping!!!

I know about losing friends as I have too because the heads are so frequent people just do not have the patience, what makes me smile is they think that we do!!!!! Stay strong Cyndie, I for one value your contribution here, which is remarkable in itself considering what you are going through!! I am glad you have got such an understanding and supportive daughter.

take care

Ann

hopefulmigrainer
Veteran Member


Date Joined Oct 2006
Total Posts : 902
   Posted 10/17/2006 10:31 AM (GMT -7)   
Thank you everyone for taking the time to reply.  I can't live on disability and have to go back to work.  I too am in really bad shape.  Right now my depression and anxiety and getting the best of me.  Of course, if it turns out that I simply can't fuction and nothing helps with migraine then I will have no choice but to start the process.  Thank you for your advice. I'm so sorry that you are all suffering but I'm glad that you have found friends on this forum.
Talk2Kel 
DX: chronic migraine, cervical degeneration, depression/anxiety 
RX: Wellbutrin, Lexapro, Soma, Immitrex 
"You don't find out that God is all you've got until God is all you've got."

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