So Now What??

By Summer Sunday, January 27, 2008

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Right now I'm happy to have found this site. ::WARNING:: ::WARNING:: Huge & ENORMOUS Grandiose VENT About to Commence in ... 3 .. 2 .... 1: I've suffered with severe migraines since my early 20's. Because of the migraines, I have missed a lot of work and I can't keep a job. Now, I am finding it is even harder to find work because of this fact, even though I am educated and have some decent work experience. Presently, I have been out of a job for going on a month now. Its upsetting that I am unable to get state or SSA disability; yet, no one will hire me or want to keep me because of my migraines (missed time). I get Dr's notes constantly because I feel I have to "prove myself". Doesn't seem like any of it has helped my cause. I was on FMLA for a while substantiated by my Neurologist. Yet, even then, my old State Govt job f'd me over & put on a reference that they would not hire me again due to absenteeism. YET, they failed to put it was because of illness. I can't get a job or keep one. I am broke. I am not sure how I am going to pay my bills and my credit is horrible because of the loss of income I've had from missing work over the years. Right now, my credit isn't getting better. My fiance is taking care of me at present. But, he doesn't make enough to support me not working and pay for my car insurance, doctor bills and the biggest Student Loan Payments. Wits End is where I'm at about now. No where in sight do I find a job or employer understanding enough to give me a chance or keep me on the payroll. So what do I do now?? What am I supposed to do for money? How do others who suffer with this manage?

Frustrated is the Theme for this year. I'm just so frustrated. I was doing pretty well with Midrin, Epidrin regarding releaving a lot of the pain. However, now it seems I CAN'T GET EPIDRIN OR MIDRIN ANYWHERE!!??? What is going on? I'm on Imitrex/Zomig as an alternative but they just make me kinda sick and too non-functional. Anyone know of a decent alternative close to this? All comments, either good or bad are welcome! Thank you!

Comments (10) | Add comment

Kelly, FlywithHope

1/27/08 8:04am

Hi Summer,

Vent away! That is what we're here for! Sounds like you are in a tough spot. I'm sure that is an understatement. Sending hugs.

Just a thought, I wonder if any of the places that you have to make payments to (i.e student loan) would be easier on you if they knew you were struggling with a disabling disease. If you have all these dr.s notes and proof of your FMLA leave, maybe they would be more lenient. It is just a thought.

From what I gather from reading your post it sounds like you tried and failed getting social security disibility. If you haven't, know that there are people who have succeded in getting disability for migraines.

But there are some who aren't too. I hear you. It is not fair. Migraine is a disease that can be very disabling. I have been out of work for 2 years, but do not get disability. It is hard. But there is hope for treatment!

Also, it is my understanding that Midrin is still available, but under different names. See this linked sharepost and look under the comment section for the generic names you can find it under now. I know of other people who are still on it. HERE is the link.

If your migraines are so severe that you are not able to work, have you discussed with your doctor about preventative medication for your migraines? HERE is a link on the difference between Preventatives, Abortives (i.e. Midrin) and Rescue meds for migraines.

Sending good thoughts your way. Let us know how we can be of more help! Here's to hoping you find relief soon.

Kelly

nutcracker1

1/27/08 8:47am

Welcome, we are glad you found us.

My understanding is that the generics of Midrin are no longer available, but the brand name is still being made. The important thing for you to know is that it is still available. If your pharmacist says he/she can't get it, check at a different pharmacy.

While some people get disability for migraines, many people find it difficult. Some people get an attorney and file an appeal. If you look in the discussion forum, under the Advocacy Issues folder, you will find a number of discussions concerning disability applications.

I hope you will join us in the discussion forum for additional information and support. To get there, hold your mouse at Manage or Connect at the top of the page. A menu will come down. Click on "migraine forums." Registration for the forums is separate from registration for this page, but you can use the same info to register. You will find the forum a place where a lot of reliable information is given, and a great deal of support is given and received. So please join us.

jessica zendt

1/27/08 9:38am

This is exactly what I've been afraid of for years. Just the other day I was telling my husband that I feared it would be difficult to keep a job due to my migraines(i'll go back to work when i'm done raising my kids). I pray that God will provide for you as he has for my family.

Cindy

1/27/08 9:42am

Kelly,

I think I would be in the same boat with work if I was not able to work from home so often and control my environment. I am wondering is you can look at your education and skills and transfer those things into something that would allow you to work from home and some scheduling flexiblity? I have gathered from participating in some of the forums on the site that some of the people here are either self employeed or work from home.

Getting on preventatives is going to be one of your best bets. It gives you your life back. It's not an exact science. It takes time to find the correct combination. But once it's found, it's great. People on the site can also give you help on getting medications at reduced rates or free from the manufactures when you do not have insurance. I'm lucky that I've good good insurance and a prescription plan, but I read and listen, because I know I might need it one day. Migraine disease does not go away.

Start with an introduction in the forums and they will help direct you to the areas that can help you the most. We want to help you and there are people here who can and want to help.

Cindy

Caspertory

1/27/08 9:13pm

I really feel for you. I take midrin, or one of the 14 names it falls under, and imitrix. I use to take a beta blocker and an antidepressant combination which worked. With imitrix, the shots work better for me. I have the pills, same dosage, but I get ringing in my ears, nausea, and they do not work quickly. For months I've run into the problem of everyone having midrin, or some form on back order. I started calling every RX in Knoxville and hit paydirt yesterday with my Target store. Hope this helps. Good luck with your job. Maybe you should investigate working from home on your computer as a travel agent, or working for American Expres, billing, medical trans. That way if you don't feel well, you are only responsible to yourself, and you can work any hour of the day, in your pj's or whatever. Hope this helps a little.

Nancy Harris Bonk, Health Guide

1/28/08 10:30am

Hello, and welcome to MyMigraineConnection.com!

I've been in a similar situation, and it is horrible. Having no money, no insurance, no job, and chronic illness are combinations that really don't work well together. Venting is allowed, most of the time we feel better about it. Now what are we going to do to help you feel better?

Some suggestions on getting reduced prescritptions can be found at Partnership for Prescriptions Assistance and National Council on Patient Information and Education.

Midrin is still being produced but is in high demand and short supply. Click HERE for more information.

I know money is an issue, but seeing a Migraine specialist to get your attacks under control would be the best thing you could do for yourself to get your quality of life back. Reduced pain would mean the freedom to find a job, etc..... Click HERE for our list of patient recommend specialists.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

One of the best ways to stay current with Migraine and headache disorders is to sign up for our free newsletter. Click on the green Free Newsletter button on the home page.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, MyMigraineConnection.com

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

stacy

1/28/08 9:13pm

I am now retired..forced due mostly because I wasn't getting better like I had been told and I thought my world would come together after being "detoxed" off all my pain meds.

I had a good paying job for over 20 yrs and once you use up the FMLA

there was not much to do but go out on medical w/out pay of course.

I finally after months of my boyfriend taking care of me, i put in the paperwork to retire, disabled through my employer. I have filed for SSI and I am on appeal. I have a wonderful attorney! They only get paid if you do! BUT,,,,I have had, and still am challenged by, many hard emotional situations i can't handle. I haven't taken this condition in stride very well like some of you that can function in a work enviroment.

My migraines have effected me mentally just as much. Its hard to explain. I lost my life and i have no idea if it will ever return...SIMPLY

I have borrow against my 401k to live this yr. Before I did that I was in the welfare lines. I got food stamps. AND PEOPLE TREAT YOU LIKE DIRT! You do what you have to do! My boyfriend got tired of the migraines so I am alone. I have money to get me day to day now.

Its NOT my life...thats all I know!

LSmith

3/27/08 6:47pm

Hello Stacey..Im 35-Mom of 2-and live with chronic headaches..migraines! Im always researching and reading the latest on the computer! And-Here I am..Today..with a killer headache.Which is nothing new..but Im still hopeful. I have applyed myself for disibility-Canada Pension Disibilty,Sounds crazy..seeing Im 35.But have no choice.I started Botox Theropy last Dec.It freezes the muscles in my forhead..But almost like-Diverts the pain..to the back of my head, My neck is sore to,my jaw-face..and I also say sometimes, to my husband I have a headcahe in my back today(??)I totally feel for you..and hearing stories in some strange way...makes me feel better, not meant in a negative matter(of course) But to know...there are others who know what Im going through.I had a headache headache for the entire month of January. I think once last year..I remember..ONCE-Had 5 days consective pain free. The only thing that works for me(sometimes) Is percacet.Ive tried it all-and can write a book on Drugs.Prevent. Antinflamm.BetaBlock.AntiEplic.Antidrepress. and so on. I pray for you to..one day you will be pain free. I also hope for you...your finances will become heathier as well.Its funny when people say..money doesnt buy happiness...But...My god...It certainly helps....and the stress to..on Headache sufferers, does not help.Time for me to lay down with an ice pack(Out of pain killers)(That sounds horrible!) The best to you. Mellisa

stacy

3/27/08 8:38pm

Hi Mellisa,

WOW...you are me just living somewhere else! I try so hard not to over do it this time with the pain meds because last time i didn't realize what i was doing and ended up in the hospital. so i always second guess myself about meds...i just go to bed first! thats all i ever do is sleep or lay or rub my head! the pain levels are getting better BUT i am so afraid to step out of my saftey zone and get a part-time job. if they get worse again i would emotionally be done. it just amazes me how this has paralized me socially. i do nothing..go no where. i just wish i could be pain free! Roll Eyes

in my thoughts

stacy

Briana Ashley

2/10/08 1:50am

I know that there is a difference between Migraines and a conditin known as Arnold Chiari Malformation, but many people diagnosed with migraines have this condition and never know it. Are you seeing a neuro. that is familar with ACM? I would definitely check with him/her and get an MRI, as this is the only detection for ACM. Let me tell you first hand, ACM is rough, I have went through decompression surgery and it does not relieve the pain, nothing does. And disability, are you kidding, I swear the judge laughed at me! It is hard to get disability even with an attorney.

I wish you luck in your quest, but I would check on the ACM!

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