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I feel as though I'm dying. And that is the honest truth

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Almostangela
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Post  rainbowchica Sun Dec 13, 2009 6:15 pm

I don't know really where to start this.
I've been dealing with the same frigging migraine that has been at a 9/10 for over a month now. Not that I've ever been frigging pain free. But you guys hopefully get the point. But I've not been able to go to the ER without being treated like a drug seeker. Or being yelled at. Which both suck actually. I'm not either one of those. I've been dealing with migraines since I was like 5 they turned chronic when I was 11. I am now 22. Most of you know this. I'm just stating the facts.
-sighs- I just want the pain to stop. LIKE REALLY STOP!!! And it probably never will because of the cancer that I've got. I lost my vision when I was a kid. And since then the migraines ensued. The only possible way of 'curing' me is taking my eyes. And while I still have SOME useful vision. I'm not willing to do something like that.
I've had to take two darvon-n. Neither of which have worked in relieving said pain. I just feel so lost. I feel alone when I shouldn't. My home situation is getting worse. Which in turn is stressing me out. Makes the pain worse. And makes my moods worse.
I just want to run around the house screaming because it hurts. BADLY. And I've never been at a 9/10 for this frigging long. affraid <that is me. I don't know how much longer I can deal with this. I honestly don't know. -sighs- Help? Me? Advice Please? Something? Hugs? Something?
-is dying-
~ashley
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Post  ajr Sun Dec 13, 2009 6:23 pm

Oh Ashley, how terrible for you. Dealing with that kind of pain for a solid month must be horrendous. I am so sorry. I know when my son's migraine wouldn't let up it was just horrible to be in that state. I find it so frustrating that there aren't any sympathetic doctors working in the ER that couldn't just listen to you and see that you are not a drug seeker. Has your own doctor ever called into the ER and told them what to do when you have this happen - sometimes that might help, but I'm sure you've thought of that already.

I wish I could say something helpful - all I can say is how sad I feel for your pain. Has anything ever been able to break these long migraines for you before, or don't they usually last so long? I'm thinking of you and hoping something will change.
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Post  CluelessKitty Sun Dec 13, 2009 7:55 pm

I also feel very helpless for you, and that helplessness is killing me. My heart is breaking for you. I don't understand why it isn't possible to convey to these doctors that we simply are in pain. Horrendous pain. As you are now, and all you want
is a little respite.

I so wish that something will change for you for the better in this matter and soon.

hugs, Risa
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Post  Paradox Sun Dec 13, 2009 8:08 pm

You have been through so much for your young age. I have never had one last that long and just can't imagine it.

I don't remember, have you ever been hospitalized for it to get interveinous medication? I know some on this forum have gone that route, but I don't remember what the medication was. Help anyone?

Like Risa I am feeling quite helpless trying to think of some advice for you

Sending warm gentle thoughts your way.

Charlotte
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Post  02R96 Sun Dec 13, 2009 10:19 pm

I was given IV Bendaryl, Compazine and a third drug (the name I can't remember), which I will never let them give me again. As soon as they started the IV I started to get the heebeejeebee's. I felt like I was going to vibrate off the bed I was so jittery. bounce

It did break the migraine, but the side effects were definitely not worth it.
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Post  milo Sun Dec 13, 2009 10:34 pm

Sounds like you had maxeran Dan....I get sketchy on it like mad!

Hang in there friend and hope to find a small miracle some time soon.
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Post  LG Sun Dec 13, 2009 10:46 pm

Ashley,
Im sorry.
I can't help but think the Docs are treating you like this simply because of your age. They treat me the same way. I've had severe migraines, kidney stones, and i've been in labor naturally for 16 hours and they act like I don't have the capacity to feel pain. I'm so sorry hunny. Please hang in there, I wish there was better advice I could offer. All I can say is i'm listening, and if I had the power they did, I would help you in any way possible.
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Post  AuntieBubbs Sun Dec 13, 2009 10:57 pm

Ashley, I'm so sorry you've had to suffer so much.

I hope you can get some relief soon. I wish I could help or offer some real advice.

Have either of you tried Stadol? Dan or Ashley? My neuro prescribed it for me as a rescue med and its a lifesaver for me. It works for all but the very worst 11 on a scale of 1 to 10-type migraine.

Stadol is a nasal spray, it works very quickly, and it is narcotic. Its pretty strong (my nuero has me dilute it with water, and it works better for me that way; full strength makes me feel nauseous) and may knock you out, but it knocks out my migraines when they are severe and the triptans don't work.

You could try asking your dr. for it and see if it works for you. The generic version is called butorphanol.

I don't want to sound like I'm pushing meds, lol, but it does work well for me as a rescue med, and I hate to see/hear you guys suffering so much. Sad

The ER can also give this to you in a shot, BTW.

Good luck.
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Post  02R96 Sun Dec 13, 2009 11:52 pm

I've been reading a lot about Stadol lately. I see my PCP on Tuesday and I plan on asking her if it would be an appropriate drug for my situation.
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Post  tecky Mon Dec 14, 2009 8:10 am

Oh, Ashley, I'm so sorry you're suffering so.

Toradol and Vistaril injections have worked for me in the past to break a long-term migraine. I know they don't work for everyone.

I was hospitalized for 2 weeks last spring and given 3 days of DHE followed by IV toradol and norgesic. When I was released from he hospital, the migraine was back within a couple of hours. I don't know that hospitalization is the answer.

Sending my prayers and hugs to you. I know how lonely it feels suffering in pain day after day--miserable.

God bless,
Becky I love you
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Post  Almostangela Mon Dec 14, 2009 12:33 pm

Sending you prayers and hugs, ((((Ashley))))

Angela
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Post  alli Mon Dec 14, 2009 1:17 pm

I hope you start feeling better soon. This is a tough time of year for migraines. Too many barometric triggers. I feel like my head is in fire. I'm at least getting a little break for an hour or two between attacks. I feel for you when you don't get a break at all. Constant pain just sucks. I wish I had an answer for you and for all of us.

Sending lots of good wishes
Alli
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Post  Rachel328 Mon Dec 14, 2009 1:23 pm

Ashley,

please don't give up. Someone will listen to you. I know how you feel about the pain because I've been there myself. Stadol was my lifesaver but it was taken away from me. I did not dilute it.

Hang in, keep trying, keep writing here. We are here for you.

Hugs,
Rachel

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Post  Brain Pain Mom Mon Dec 14, 2009 1:53 pm

rendeer
Reindeer Hugs
cat
Kitty Hugs
albino
Bunny Hugs
santa
Santa Hugs
afro
Afro Hugs
cheers
Happy Hugs
bom
Headsplosion Hugs

Get better soon, Hon. Crystal and I are thinking about you.
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Post  rainbowchica Mon Dec 14, 2009 2:01 pm

Thanks to all of you who have sent hugs and support. It helps to know that I am not alone in my, suffering? Though I wish not as many people went through it. Because I know that it is hell for you guys as much as it is for me. If that makes any sense.
I've tried throwing everything I've got at it. And nothing has worked. The list of medication that I do have would take up a lot of frigging space I just wish that t. So lets just leave it at me taking 22+ pills (I say + because the 22 pills are not counting my pain pills.) It can be quite the cocktail at times.
I wish that the cocktail of meds that I am indeed on worked better than what it does. But I'll probably be dealing with this for the rest of my GD life. Not pleased with that answer that I received from my PCP today.
See my neuro tomorrow. And will ask him the same question.
-hugs to all who have supported me thus far-
I really appreciate your help and support.
Done rambling and am going to hide in a dark room for a while
~ashley
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Post  sailingmuffin Mon Dec 14, 2009 2:55 pm

Hi Ashely,

I'm so sorry that you are having such a rough time right now. I got my first migraine at `1, but they becaame chronic at age 17. I am now 29 and have been dealing with chronic intractable migraine/New Daily Persistent Headache for twelve years now. I know that it is increbibly frustrating and I think all of us would do just about anything to make the pain stop.

22 is awful lot of medications to be on at once. You might want to talk to your neuro about scaling some of them back a bit. Certainly medications can wreak havoc on emotions. In addition, it seems that the medications you are on are not helping that much since you are having to go to the ER so often. (Don't worry, I know you are not a drug seeker, you are just seeking relief from this horrible pain.) It truly amazes me that the medical profession can be so cavalier when it comes to migraines. Most drs will give us nmedicine for sleep and send us home or call us drug seekers and send us home without teatment, Of course, there are many compassionate ER drs who take migraine seriously.

For the past six or seven years, my neuro's goal had been to keep me out of the ER. There are several ways of deling with this problem.
The first would be a prescription for a strong abortive that has worked in the poast thatyou keep at home and take when you feel you need to go to the ER. (Perhaps a prescription for phenergan suppositories and some sort of strong pain killer.
Another option would be to have your dr write a letter stating that he is your dr, and detailing the correct plahn of treatment for you. You could then present this to the ER dr or have your local er keep it on file.
There is also the possibity of an outpatient IV center. When you got a bad one, you could call your dr, who could then fax the order to the IV center and you could recieve treatment there, without waiting and it is a lot cheaper than the ER.

It is clear that you need a new preventative, a mild abortive, a major abortive, and some form of pain medication.

Also, feel free to rant all you want. Feel free to post all you want too, this is what the page is for.

I am sending hugs and prayers your way. I hope all goes well tomorrow.

Pain free days,
sailingm
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