Saturday, July 24, 2010

A Vent About Migraines

(Warning -- this may be a boring post. But I'll throw some beads in at the end to make it all worthwhile, though.)

Sigh. That's an all too-common sight around here anymore -- me sacked out on the couch or in the bed, a washcloth over my eyes for darkness and an ice pack on my head for pain. (Zack took that picture and he apologizes that it's blurry. I'm IN the picture, and I apologize for being, erm, not showing my most glamorous side!).

The past two days I've been stuck in bed with horrible migraines -- but what else is new, if you've been a long-time reader? I did go to the ophthalmologist and he saw some slight swelling around the optic nerves but "nothing to be worried about". Cripes. That is exactly the reason my neurologist gave me a spinal tap a year ago.

(about pseudo tumor cerebri, also known as idiopathic intracranial hypertension)

Herein lies the rant -- I no longer HAVE a neurologist. He doesn't take my insurance anymore, and the nerve-blocking shots that I was getting in my forehead and neck every two weeks are $800 a pop. No idea how much an LP would cost. Suffice it to say, paying out of pocket is more than my mortgage.

The good news is the only other neurologist that is available via our insurance is at Johns Hopkins Headache Center. The bad news is the doctor won't be able to see me until March 2011.

2011. As in, next year. In March. MARCH. 2011. Did I say next year?


So yeah. I haven't been treated since May. Other than a pill to try to keep eye pressure down.

Both my past neurologist and my husband have been doing their best to push my folder through, as the Center indicated that if they had an opening, or if they viewed my chart and decided it warranted being seen earlier (!!!!), they'd take it under consideration. Which I think means, you're kind of stuck with March, dude, because we have a lot of patients here.

So that's my rant. I'm angry that I have to deal with migraines, I'm mad that my eyes always kill me, I'm mad that it's affecting my creativity, I'm just so MAD. I want to stomp but it would hurt my head too darned much.

OK. Got that off my chest. Sorry. Deep, soothing breaths, right? OK. OK.

I can do this.

I will do this.

This will pass. Yes. It will. It has to. So, it will.


Aaaand, I promised you pictures of beads if you stuck with me, so here they are!



42 comments:

  1. You poor possum. I can sympathize with the migraines but mine don't happen so often. It really is troublesome, I think, that insurance stands in the way of you and pain relief, even long term pain management and prevention. I'll cross my fingers and hope that you get in sooner than March 2011. That is just too long to wait and too much time out of you and your families lives. Meanwhile, I'll take a few deep calming breaths for you.

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  2. bless your heart! I am glade mine are not as bad as yours.

    Hope they can see you before March......as in daily calls? Tears?

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  3. it's unbelievable that you can't get to see an insurance acceptable doctor until march next year..
    we need insurance reform.
    sorry you are not feeling well,of course anyone would be Mad about this situation.

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  4. Good grief, that is unacceptable! Not till next March? I hope you get in sooner, migraines are horrible.

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  5. I remember 4 day migraines in Scotland when we lived there. Atleast in the UK theres the National health plan where its all free.(We may end up back there one day too) So I just hope you will be keeping better. March cant come soon enough bless you I really feel for you! Our two major Insurance companys seem to be doing some big overhauls and we too are having to find some new Drs. Seems things keep tightening up nowadays everywhere one turns.

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  6. Is your primary care doctor willing to do anything in the meantime? I'm not sure if he/she already prescribes something, but there are some really good medications now that help a lot of people. Not everyone of course, but they can be a lifesaver. Medications in the triptan category such as Imitrex, Relpax, etc. end the migraine attack rather than just masking the pain. Of course, you may be many steps ahead of me & I'm telling you something you already know. If that is the case I certainly don't mean to be condescending. Sending good thoughts.

    Diana

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  7. Hi Diana! My primary care doctor can't do a thing because the migraines I have are atypical and don't respond to regular migraine medication. They're also caused by too much fluid in my cerebrospinal cavity. It's a nasty thing to have. No cure, hardly any remedies.

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  8. Hugs!! I am sorry you have to go through this. I hope you can get in before 2011.

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  9. oh no lori, this sounds awful. i'm sorry for your pain. i hope you feel better really soon. :)

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  10. Oh you poor luv. I suffer from migraines but thankfully only 2 or 3 times a year. I can't imagine having them all the time. Hopefully you can get in sooner than March.

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  11. You poor thing. That really sucks. They better get you in sooner, that is a ridiculous wait!

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  12. Lori I am so sorry you are in pain. Sure wish there was something you could do. Waiting a year hardly seems fair, or right.

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  13. I hope you get to see the doctor before 3/2011. In the meantime, can they tell you what to do about it till then? Anybody else that can help? Sending lots of hugs to get you through it all.

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  14. {{{{{{{{{{Lori}}}}}}}}}}

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  15. Feel better! I've been down all weekend with a migraine... not that bad though. It's now 9:15 on Saturday night, and finally feeling better.

    Thanks for sharing! Now I wont complain so much... love the beads!

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  16. soooooooo sorry Lori, am thinking of you.

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  17. The health system in the US sounds like it desperately needs a reform. I feel for you, Lori - migraines are awful. Sometimes they are triggered by certain foodstuffs - such as chocolate, cheese or red wine.
    Can't anything be done about the fluid that is part of the cause? (Sorry if I am asking a dumb question - I've never heard of fluid in the cerebrospinal cavity)
    Sending you lots of feel better soon vibes.

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  18. I am very sorry for you, and I will send prayers and hope for a better solution. I deal with an ongoing medical problem in my family also, and there are not enough doc's, and the we need medical reform.

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  19. I'm so sorry to hear about the migraines. A few years ago, I thought I had migraines but it turns out it was meningitis. I know how much it sucks when our insurance company has more say when it comes to our health than we do or our doctors do. Take care of yourself.

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  20. Oh my, so sorry to hear that. I'll hope for you that your appointment with the new doctor will happen before March!

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  21. Oh dear, that sounds awfull, and that you can`t see any specialist for the next many month is unbearable, I feel for you, -and hope you will be without too many attacks the next more half year.
    xo Dorthe

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  22. 2011 - that's just crazy. I know you have a special disease that I do not know a lot about, but I had a lot of migraines last year, up to the point where my whole back got stiff and I could not move anymore. I could not go to my regular doctor because they would not do anything since I was pregnant. Then somebody told me to try a osteopath - I went there three times and it was all gone. I had to pay it myself too, but one treatment was 70 euros - and well worth it. I am now almost painfree since 1 year. Not sure if it would work for what you have, but while I did not really believe in it before, I am now a big fan of it. Get better soon.

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  23. I'm sorry to hear you are in so much pain Lori! I'll keep you in my thoughts for healing and relief to your situation.

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  24. Lori, I feel for you. I don't even like to deal with a head-ache-popping 3 advils when I get one to get rid of it quick. Migraines are very debilitating. I hope the doctor accepts to see you sooner. You can't live like this until March! This is inhumane in my book.

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  25. Oh Sweetie!!! I so wish you lived near me we have an excellent migraine specialist and he is awesome! Shelby had to see him and my sister-in-law sees him on a regular basis (optic migraines) I only get them at hormone fluxes but they really SUCK! I am feeling your pain!

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  26. Oh no, migranes are the worst! And to suffer so long really zaps everything out of you. I'll send up a little prayer that you get seen earlier than March 2011, and get some relief before then.

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  27. Feel better, I can't even begin to imagine, I suffer with sinus headaches, but I'm certain there is no comparison with what you've been dealing with. Hope a sooner a appointment comes through (((hugs))

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  28. oh I am so sorry. I too suffer with migraines-they are debilitating and the pain unbearable. I have tried everything, but the only thing that helps is fiorinal w/codeine. I take it and go straight to bed. Sometimes I'm in bed for 3 or 4 days.
    my migraines are definitely related to hormones. when i was pregnant with my boys, just one headache in the first trimester. so i'm hoping once i reach menopause they'll be all gone. i pray.
    i hope you can find relief soon! take care.

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  29. Oh no, how terrible. I'm so sorry for all that you've been going through.

    Hugs.

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  30. I hear ya on this one. I suffer from migraines to. I have no faith in insurance of doctors.

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  31. Lori I'm so sorry you are not well, really sorry! I wish you good luck my friend!!!
    Hugs
    Monica

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  32. OMG! I'm sending good doctor vibes your way. Migraines are crippling. I would give you a hug if I were there in person, but that would probably hurt.

    Hang in there, or lie down there, whichever helps.

    Soft angel kisses on your head.

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  33. Oh man, Lori, how horrible!! Not until NEXT YEAR? That is insane :(

    Hope things work out and you can be seen before then! And in the meantime, I hope your pain lessens greatly!! Feel better!

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  34. Migranes are awful!! And it doesn't help when you have insurance problems. Hope they are able to get you in and get you some relief. Hope you can get some temporary relief soon!!

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  35. Oh you poor dear. I sure hope you get treated soon. Try to hang in there. I hope your headache goes away soon.

    PussDaddy

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  36. I hope you find some relief soon, Lori!

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  37. I'm so sorry. :( Hugs!

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  38. Oh so sad to hear of your migrain. I wish I had DR. MOM remedy for you Be Blessed

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  39. C'mon March 2011! I really hope an opening comes along sooner for you. That is just tooo tooo long to wait

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  40. You're a poor wee scone. That's what my Godmother always used to say to me - still does! - when I was feeling poorly and it always made me feel just a little bit better. And migraines seriously suck - I've only ever had a couple and they were mild I think compared with yours but I did not enjoy them. I hope you can sort things out with your neurologist - I am grateful every day that I don't have to reply on insurance for medical care (and know how lucky we are over here) and hope that you can get things sorted as soon as possible.

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  41. Lori,

    You don't know me but I am sending some loving advice--last August I began getting my first migraines at age 54. They are not to be believed in their pain.....

    Turns out I had a double ear infection, BUT the migraines persisted long after the ear infection passed. I am a voice trainer and very interested in alternative medical treatments, and I was able to trace part of the root of the migraines in two things 1) my neck, shoulder and abdominal muscles were just plain messed up from some traumatic surgeries over the years. It took four months of work with a qualified trainer and massage therapist, but the results are worth it. 2) Dehydration causes migraines, too. Keeping hydrated, right when I feel that little thing above my eye start, usually staves them off. 3) I simply was tired and worn out from being a musician, teacher and mother for 22-29 years. I had to take time to reinvent myself. Hope this all helps...

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  42. oh, dear. I am so sorry. What a horrible nasty disease.

    My husband & I have a friend with something similar- too much fluid in his spine. He had to have regular spinal taps to remove it... Bleck.

    I can relate to the horrid insurance thing- just had a very necessary surgery denied by mine. My surgeon is fighting for me, but I'll just have to wait and see.

    May you find peace in the waiting.
    Bless you.

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