it's really a hard time - everyone

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Wed, November 05, 2008

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Hello everyone from Migraineville AZ,

I have never gone into a tailspin of desperation - or asked for your hugs and support but I am not doing well and I usually keep that to myself - but I need your support. I am at a real low point. I am two weeks out of the hospital another stay of a couple days where they could manage the severity of the pain and the barfing, the aphasia, the aura, the sight deficit, the neuropathic pain the status mig's. I am so tired of fighting the pain everyone, I am losing my sense of optimism - the only time I felt relatively okay was immediately after the IV push of dilaudid in the hospital every four hours. My preventatives con't to fail. And by the way - I live in the land of the Mayo clinic. Do you know that just to be seen there they charge a 550 dollar fee and then everything is added on top of that? My ins will not cover it . What happened to the Mayo mission to treat all? Not just the rich?

I'm going to stop there. I hate feeling weak and unable to fight. But it's a really, really hard time. After going through the Valium coma this summer I thought I would get a major break - but just like my ketamine treatments it didn't last. And it was depressing frankly to end up in the hosp again two weeks ago - admitted through the ER. I am so concerned my caregiver Steve will just wear out - he has been wonderful, my rock, always there for me - and yes people I have mental health help if I need it but what I really need is some treatment success, not failure after failure.

Status is an ugly and dark place to be. Thank you all for any support you offer.

Take care -

Ian

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Nebula

11/ 5/08 10:55pm

Ian my name is Carolyn. I feel everything that you do and I feel for you. I woke up a little bit ago from a demoral shot I got earlier today. I was in the hospital 3 weeks ago and now I'm back in the same spot. Worrying that people won't believe me and wont' want to help. My bofriend and family take wonderful care of me...but I secretly worry that they will get tired of constantly caring for me.

My doctor has asked that I detox from all my abortives...no imitrex or relpax for a few months. I'm also trying to get through my senior year of college. There is no optimism in my life right now. I'm just living, I'm just trying to live and I'm trying...and failing I feel like

I don't know why life has to be so hard for people like you and me. I don't know why I am so different than others, or really even what is wrong with me.

I don't have anything positive to say to you. I can't be positive for myself right now and I won't lie to you and tell you that I know everything will be ok. I just want you to know how much I care, though I have never met you and probably never will. I just want you to know that you are not alone in your suffering.

Ian G

11/ 7/08 1:38pm

Dear Carolyn - sounds like we have some similar problems. And I try my best to not go into rebound - but it's very difficult when you have constant pain like I do.

I'm glad you woke up migraine free, I don't remember what that feels like.

All the best -

Ian

Nebula

11/ 6/08 12:25pm

I woke up this morning headache free and rethough what I posted here last night. I wouldn't say that I am feeling positive about my situation - but it's the situation that I'm in and there's no chaning it. I just wanted to add:

Live for the days like today. When you are migraine free and it feels like it might be ok.

Nancy Harris Bonk

11/ 6/08 10:42pm

Oh Ian, I am sorry to hear you are having a rough time. Have we been over the whole trigger thing before? Has anything in your diet changed that may be increasing your Migraine frequency?

I'll keep my fingers crossed that this pain ends soon for you.

Ian G

11/ 7/08 1:34pm

Dear Nancy thanks for the good thoughts. I am so careful with my diet - for instance onions are a trigger, and I just heard yesterday that the skin of tomatoes has something in it to set people off - but right now it's status or intractable as they like to call it in the hospital. I am putting a lot of hope into Lyrica. I just couldn't fight my ins any more and decided to pay for it myself.I started it last night - made me very dizzy this morning and I had to cancel a meeting. I think Nancy my brain gets into the hyperactivity state and it stays that way despite everything I do and what my neuro's throw at it. For instance: I bought an Ipod just to download relaxing and soothing music which I like to listen to during an attack. I guess it helps some. But the pain can be like quicksand - the more I try to get out - the deeper I get in. Lyrica could be a way out - I hope!

That's about all the computer time I can do -

Thanks again -

Ian

Maureenmigraine

11/ 7/08 8:27pm

It couldn't really be true that misery loves company, but, really, reading your post about how awful things were actually made me feel a bit better. I have had about 5 days last month that were migraine free. I need to count my blessings.

I'm going back to the elimination diet and trying to see if anything will make even a bit of difference. The Occipital Nerve blocks had the best result for me. Hydrocortisone drip through an IV in the hospital also helped, but had to be stopped because of adverse affects.

Good luck with the Lyrica. The TV ads make it look like magic. My prayers are with you.

Maureen

heidi

11/ 8/08 8:28am

God Bless you Ian. Like a good bran muffin, this too shall pass. I will pray for yu as we are fellow travelors in the migraine world. Peace

Ian G

11/ 8/08 3:30pm

Dear Heidi - thank you so much for your kind thoughts. I am on my second day of lyrica. Keep your fingers crossed. It is nice to at least feel a little bit in control because it seems my current neuro is useless. I'm paying for it so I get to make the decisions about it with my GP - who is my hero. He's fantastic and I am blessed to have at least one really good doc.

Take care!

Ian

hschaefer

11/ 8/08 4:18pm

Hey Sweetie

You may want to think about a Pain Management Dr. if you havnt already. I see on on Dec 11. God Bles and Peace be with you as well as a migraine free life.

Heidi in Texas

11/10/08 11:29pm

Hi Ian,

I ran across your story while doing some research on migraines for my husband. I'm an RN, and reading your posts reminds me again how difficult it is to find comfort in our health care system.

I can't imagine your frustration and I'm no expert on the subject....but I know that you shouldn't give up...answers will come. You took a great proactive approach by developing a plan with your doctor....your creative brain will find a way through it all.

Blessings to you...another prayer has gone out for you.

Ian G

11/11/08 6:03pm

Thank you so much for your kind comments - you didn't give a name so I'll just have eo address you as a migraine friend. If you live in the Texas area you are really lucky. Dr. Kruz (the spelling is eluding me today) - the expert from this site is in Dallas - and you also have the Houston Headache Clinic which has a week long in patient program that addresses all facets of migraine care from traditional to the alternative therapies. My ins doesn't cover it - but it is 7000 dollars for the week - which sounds huge but it was 5500 about a year ago or so to do three days of ketamine therapy with Dr. Kruz. I am saving up my money to do the Houston Clinic because it sounds wonderful. Forget about Mayo here in Arizona. One of the best hospitals in the world is ill-equipped to deal with migraine I'm a fraid. That department is dominated by Fr. Dodick who is focussed on his clinical trials rather than clinical care. Besides it costs a mint there and my ins considers it out of network even though it is here in the state of AZ. If there are any questions I can answer on behalf of your husband - please fire away. It's really hard for us men - in a disease that men only represent 12 percent of the total migraine population.

Thanks again -

Ian

it's really a hard time - everyone

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