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07/15/2011 04:07 PM

New to forums...2 years new to Migraines

Rosemyrtle
Rosemyrtle  
Posts: 4
New Member

Good Afternoon,

This is my first time posting here.. HELLO!

I am currently 28yrs old and a newly wed, my loving husband signed up for the long, hard road with me.. as my doctor said to me this morning .. I am complicated.

Several years ago my now diagnosed IBS took over my world.. 2 gen surgeons, 2 GP's, 1 Internal Organs specialist, 1 GI and 1 Neurologist later we are all finally convinced it has to be IBS. In the beginning no one would even use that term when referring to me.. I was 83lbs, in constant pain, not digesting food, malnourished, and I apologize for the TMI statement.. loosing blood when I was using the bathroom Sad

It must be crohn's/colitis/celiac/lupus.. the list goes on.. and after two years of constant tests.. when every one came back fine.. we had to settle on IBS.

I don't know what started it (possibly stress after the 2 years I was going through) but I woke up with the worst pain I had ever experienced (sept09)I had never had headaches, and had experienced 2 migraines before this day(3 years apart-both lasted aprox 1 hour) and then this one.. 7 hours, vomiting, crying, blinding pain.. and after that 7 hours it came back.. and came back basically every single day after.

They always lasted 2-10hours, I was hospitalized 3 times, it would take 3-6 hours of IV medications to get them under control..usually resulting in an IV dose of DHE mixed with Gravol, and then I could go home, tired and miserable.

In the hospital they would only concentrate on getting it under control, and then send me home.. no one would run a single test. I was still seeing the Internal Organist at the time, and he offered me .. something.. sorry, I honestly don't remember the name of it now.. and followed it with 'make sure your man is beside you when you take this, don't get out of bed in the morning w/o him, and it may cause permanent low blood pressure' uhm.. no thanks - maybe they will go away.. why are they even here..how much more can I take?

I got referred to a neurologist.. Oct 2010(over a year into this hell) who said.. this isn't a neurological problem..pardon? It's severe migraines resulting in me being in the hospital.. coming on up to 5x's a week, and causing vision loss etc.. and it's not neurological?

She offered me Amitriptyline. Life is definitely improving.. as a side effect amatriptyline causes constipation (purrfect!) it helps with chronic pain! Fatigue! basically every horrible chronic 'syndrome' that i suffer with. Nothing is cured.. every 2 months I have to up my dose, as it stops working. This past week I have had 2 bad(not severe) migraines. Bad is on the couch in the dark with an ice pack vs. in the hospital.

I don't feel alone in my life, as I have an amazing husband. I do throw pity parties maybe once-twice a month Tongue

and today I am just angry

I work for a large, Canadian telecommunications company.. the 'family' company - a we care company..that walked in one morning and layed a lot of upper/middle management off.. my supervisor and the HR specialist who dealt with my files.. this week the new people in this position are saying.. we lost 2 years of paper work/dr. forms etc.. we want you working 6am mornings and 5 days a week (I am a PT worker, i never signed up for full time, and basically if you don't take this - then we will cut you to 20hrs and you have no choice but to leave) so either 40 hrs or no hours.. WTH. I offered to have ALL their hoops jumped through again, to have ALL their forms filled out again.. and they responded with a 'No..we want to talk to your doctor'

I went and saw my Dr. today - to tell her my side of the story, to tell her how awful work has been since the lay offs (btw this lovely, family oriented company got in a lot of Gov't of Canada trouble for the sneak attack lay offs - so now every one is just getting fired for whatever reasons-including 'inadequate'medical paper work) and she already has the form from them... and not a standard medical form - HANDWRITTEN... Why is she on this medication? How long does she have to stay on it? Does she need to be on it at all?

Seriously?? Do I even need to be on it? I went from 160hrs sick time last year .. to 60(16 of which was due to my severe migraine onset when you came in and fired everyone-my husband was one of those many people) I am just getting so stressed out..

I was reading posts on here about guilt associated to our health issues.. and of course I have it. I have had 4 years of feeling like a flake, feeling unreliable, and feeling like my big brain full of ideas and possibilities is way ahead of what my body can physically handle, but at home no one makes me feel bad, not even an off hand comment.. and then at work I don't feel guilty - I feel angry and stressed, and like they are causing this most recent on set of attacks.

whew! I am very sorry - I am a total newb and come here and just explode in my introduction.

This is exactly where I am in this constant battle w/ chronic illness.

If anyone has any advice about how I am feeling I would appreciate it. Have any of you felt this anger at not being understood/pressured?

Thank You for reading

LOL

Rosemyrtle <3

Reply

07/17/2011 07:40 PM
davesprettylady

Hi there. I apologize that it took so long for me to respond, I was away for the weekend on an internship retreat thingy. I'm glad you've found us, but wish you hadn't had to. I'm sorry you are suffering so. Have dealt with insurance companies much more than someone my age should have, so I feel the pain there. I can also most certainly empathize with your statement "feeling like my big brain full of ideas and possibilities is way ahead of what my body can physically handle" I feel like this ALL the time!!! And I definately know the feeling of not being understood or being pressured to do things you simply cannot physically handle. And unfortunately, I don't really have too much advise to give you on this point as I haven't quite figured out how to deal with it yet. But I assure you, you are by no means alone in your plight <3

07/20/2011 01:26 AM
Greytabby
Greytabby  
Posts: 2791
VIP Member
I'm an Advocate

i definately have been misunderstood...and i hate it...you will find support here...starting with me and dpl the gl...welcome...you are putting up with so much....you deserve a cheer...or at the very least respect...people just dont understand how their lack of understanding makes matters worse when they refuse to try...but to people...ignorance is bliss..they dont want to bother...so they choose ignorance....but just remember someone cat understand how you feel if they dont suffer the same way...i am also bi polar have have menieres...and only someone with these illnesses can truly relate...my daughter is retarded...and cant comunicate due to brain damage...i care...but i cant begin to understand how she must feel when she is trying to get a point across...i guess what i am saying is be forgiving...to hold a lack of forgivness in your heart can increse the stress...so forgive them their ignorance...focus that energy on things that need it...like you and etc...i hope i helped...

kat


07/21/2011 08:50 AM
Rosemyrtle
Rosemyrtle  
Posts: 4
New Member

thank you both for your welcome and kindness.

I am still feeling a lot of anger at my work - finding out that they let two other employees cut their hours down, one because she wants to work on her own home business, and the other because she wants more time to enjoy summer.. and they are still making me jump hoops because of my health.

BUT on a good note, the husband has a job interview today!

I moved away from my family 3 years ago to go adventuring and met my husband almost immediately.. he is from this city we are currently in, and my family is 1500km away .. this job is in my home town, where i will be able to walk to my moms house.. and have major support, as well it's more than enough money for me to take a couple years off work.

I am so nervous/excited!

Hoping I will be handing in my resignation letter tomorrow!

It will make the fact that I have been up since 11pm(lastnight) with a bad(not severe) migraine and that hydro has chosen now - 2 days late - to come take down the trees in my yard, seem like a great day.

I hope everyone is having a good health day!

x


07/21/2011 10:18 AM
davesprettylady

Hang in there! Will be praying that your hubby's interview goes well <3
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