Friday, July 25, 2014
Monday, July 27, 2009 sammyjoe, Community Member, asks

Q: what do you do when absolutely NOTHING works? After 27 years, I am still fighting a losing battle.

I am 46, and I don't think I can fight this fight anymore.  I have been in drug trials, been on probably 2 dozen different meds, tried PT, trigger point injections, botox, chiropracty, vitamins, herbal remedies, diet modifications, spent 30 days in a pain clinic, and seen 4 different neurologists.  At the moment I sleep with ice on my head, take 5 prophylactic drugs, use a combination of imitrex, feurocet, percocet, and "Head On" for actual migraine attacks, and go to the ER for IV dilaudid, benedryl, torodol, and zofran when all else fails.  I have nothing left to live for at this point, because I cannot live in constant pain anymore.  I have chronic daily headache, migraine, and ice-pick headaches.  I feel like I am being stabbed with an ice pick over my eye, into my temple, and down from the top of my skull...all at the same time.

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Answers (3)
Teri Robert, Health Guide
7/31/09 11:16am

-:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-

 

 

Oh, {{{{{{Sammyjoe}}}}}}

 

Bless your dear, sweet heart. You've been through the wringer, and I can so relate to you. It's encouraging that you're here though because that tells me that you still DO want to live and would like to find some help.

 

About ten years ago, I felt much as you say you do -- wondering what there was to live for -- because I spent most of my time in bed with the Migraine from hell. I'd been through family doctors, ENTs, allergists, and had seen and fired every neurologist within 100 miles of my home. I finally got angry enough to take charge of my health care and went to a Migraine specialist. Now, I often go two to three MONTHS between Migraines. If you want to read more about my own battle against Migraine disease, take a look at Excerpt 2 - "Living Well With Migraine Disease and Headaches."

 

The turning point for me was learning that neurologists and pain management doctors aren't necessarily Migraine specialists. There ARE doctors who specialize in Migraine and other headache disorders and treat nothing else. That gives them lots of experience, and since that's all they treat, they can stay up-to-date on the science and treatments. Nancy's link didn't work, but we do have a listing of patient recommended specialists HERE.

 

We know how easy it is to feel as if you've tried everything out there, but there are so many medications that can be used for Migraine and headache prevention that it's literally impossible. You can find a list of potential Migraine and headache preventives in Migraine preventive medications - too many options to give up!

 

Sammyjoe, there's a lot more information we can share for you, and we're right here to offer you support.

 

PLEASE let us know how you're doing?

 

with a gentle hug,

Teri

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Lonely, Community Member
1/23/11 6:03pm

hello,

 

I read your artical and felt a sence of relief.  I have suffered from major migraines since i was 16 and am now 38.  I have felt soo alone for so long.  My mariage of 11yrs ended because he could never understand.  He thought it was just an attention getter and I was 'making it happen'.  I've lost jobs because of missing too much work, but it is impossible for me to go to work with all the lights and noise and having to run to the bathroom every five min to get sick!  It feels like no one at all can understand that excruciating, debilitating affects that migraines have on a person.  The most common thing I hear is, "it's just a headach, take some advil and it will get better"!  I too have been to many
Dr's, Neurologist, and even Psychiatrists.  My migraines are diagnosed as "Atypical", meaing that I don't get any warning signs at all.  They just hit me hard and fast, usually accumpanied by uncontrolable vomiting.  I've tried avoiding any kind of 'trigger' foods with no luck at all.  I've also tried every imaginable drug there is.  I have low BP, so some drugs like beta blockers would make me so dizzy i'd faint.  Triptans don't work for me because by the time I have one, its so bad they just don't do anything.  I've had a total hysterectomy that supposedly was going to help, but it didn't.  I've tried hormone replacements, anti depressants, anti seizure meds, PT.  And absolutely nothing works.  A year ago I was in a commercial van accident where I rear ended someone.  No one was hurt badly, but the airbag deployed.  I had whiplash and burns.  They did a total work-up then and everything was 'fine'.  But my migraines have been even worse since.  I hate living like this, in bed two or three days a wk.  I've missed important functions for my kids.  I've ended up in the ER sever times to get Dilauded, Zofran, and Toradol and that seems to be the only releif that I get.  But I've had several Dr's that were so increadibly rude to me, I was in tears.  They would flat out tell me that I was just a drug seeker and attention getter.  I don't understand why in todays day, Dr's can't be more understanding!  It's bad enough that no one in my life understands and criticizes me, but I expect more from a Dr.  Some months are better than others, but most I suffer from them at least twice a week.  I'm a single mom with no insurance and have medical bills so high i'll never be able to pay them.  Im at my witts end.  I have no money to go see anymore Dr's and I sometime just want it all to be over.  I feel like my family would be better off.  But I know thats not the answer, it just sometimes is so hard to deal with! I'm at a loss as to how to just live with this!

 

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ithurts, Community Member
7/11/11 9:11am

I could have written this myself.  I am 36 and have had migraines since I was a small child.  My 13 yr marriage ended in 2009 for the same reasons.  He was "tired of taking care of me"  Thank God I now have a husband who is so kind, sympathetic, and understanding.  But the migraines are still horrible.  I have been on everything!!  Nothing works.  I end up having to go to ER to get IV Dilauded, Zophran, and Toradol but more often than not its a fight.  Most drs just do not understand!!  I have a neurologist now who is pretty good and I'm taking all the preventatives but nothing works.  I too am at the end of my rope and don't know what to do.  I have racked up a small fortune in medical bills too.  I just want a normal life! 

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Nancy Harris Bonk, Community Member
7/30/09 11:32pm

Hi sammyjoe,

 

I know you are going through an extremely difficult time right now, but you do not have to go through your pain alone. Please find someone to talk to right away: a family member, a friend, a therapist, a member of your church or a doctor. Talking about your suicidal thoughts will help you feel less overwhelmed. THCN is not a crisis hotline and does not provide medical advice, but there are people and resources out there that can help you get through this. Hotline counselors are available 24 hours a day seven days a week. They will listen to you without judgment[we can’t vouch for the confidentiality of these hotlines] and can talk with you about everything you’re going through.

The Boys and Girls Town National Hotline at 1-800-448-3000

1-800-273-TALK

1-800-SUICIDE

If you would like the help of a professional immediately, you can call 911, take yourself to the nearest emergency room, or

Find a Therapist.

Support groups exist in many communities to help you get through this. Try these organizations:

NAMI (National Alliance on Mental Illness)

DBSA (Depression and Bipolar Support Alliance)

Befrienders Worldwide

PsychCentral Support Groups

 

Since your current doctor is not able to help reduce the severity and/or frequency of your Migraines, it is time to see a Migraine specialist. Neurologists may be fine doctors, but Migraine specialists devote their entire practice to treating patients with Migraine disease and headache disorders. These doctors are on the cutting edge of treatment options and new diagnostic tools. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists 

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grace99, Community Member
7/19/11 10:07pm

Having had many years of chronic daily migraine, I can understand how grueling it is to try to exist with it.  However I was told by neurologists not to take migraine bail-out drugs or even OTC painkillers because it would just worsen my migraine cycle, cause an ever greater rebound element.  I cannot even drink a single can of cola without triggering a worse than usual migraine -- and it is bad enough as it is!

 

So I'm wondering if you have considered if you might be better off without all the meds you take?  It would be hell going off -- you might have to be hospitalized for the detox -- but it might be very worthwhile. 

 

If I took the drugs you take -- and many doctors would unwittingly prescribe them -- I believe my migraines would become much, much worse very quickly.

 

It's really hard to accept that daily migraineurs cannot do those drugs.  I sobbed when I got the bad news.  But unfortunately it can set up a vicious cycle of ever-worsening migraine.

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By sammyjoe, Community Member— Last Modified: 12/04/13, First Published: 07/27/09