Damn... My daily use of migraine meds is causing kidney damage.

[ThomCat]

I'm now peeing blood. The doctor is going to immediately tell me to stop taking the over the counter migraine meds. But they're all I've got for the every-day migraines because the insurance company says I can only get 12 of the prescription pills per month.

I hoard those pills for the worst migraines. I have to. I have no choice.

So, now I get one of those fun choices. I can ignore the damage I know is going on in my kidneys so that I can manage the daily migraines. Or I can take better care of my kidney, but I'll be stuck in bed with blinding headaches most days.

I don't see a winnable situation here. Hopefully one of my doctors will.

I'm not looking for advice. That's what my three main doctors are for. I'm just griping. If it's not one damned thing breaking down it's another. Nobody wants to hear about blood in my pee, but I need to gripe. x(

I hope you are all healthier than I am. Please be well.

[BarenakedLady]

1. Oh Thom!

I'm so sorry.

:hug: :(

[ThomCat]

5. .

:hug:

If I find any good news I'll share it. It would be nice to get some substantial good news.

[Lorien]

2. I'll say it again and I'm sure I'll be ignored again

botox for migraines. It works incredibly well. Google it for yourself.

[ThomCat]

4. I have asked about this, but my pain management doctor and my

neurologist agreed that I absolutely should not go this route. I don't know the details, but when those two agree I'm not going to argue.

I'm going to bring it up again. All options have to be open to end these daily migraines.

[Lorien]

10. Yeah, it's a whole lot less profitable for them

botox has loads of "off label" uses that many doctors use but won't promote (because it's not FDA certified for that use). One of my best friends uses it to control the pain from her post polio syndrome; it's been much more effective and safe than the meds she was on. For $300 you can get a "cosmetic" injection of botox between your eyebrows, which in most cases will stop all migraines cold for six months or so. There aren't any horrible side effects like kidney damage either. It's been a life saver for me. Personally, I'd look for a second opinion.

On edit, here's a link: http://www.aboardcertifiedplasticsurgeonresource.com/botox/migraines.html

I have five injections; two between the eyebrows and three to four above the eyebrows. That's all it takes to completely rid me of headaches and migraines for six months. I can still get sinus headaches, but I never get any other kind any more.

[TZ]

55. No. Prescribing off label is very dangerous.

Botox is nothing to fool around with especially for someone like Thom who has tons of pain issues.
I think his doctors have sound SCIENTIFIC reasons to not recommend this.
You do know its the off label type prescibing that has lead to such disasters as thalidomide babies right? It was NEVER supposed to be for morning sickness but doctors found out that it worked well..however since no trials were done, nobody knew about the dangerous side effects.
Botox is dangerous.

[Lorien]

82. Botox is not dangerous

so me a single article stating that it causes ANYTHING as dreadful as the side effects of pain medication.

I did my research throughly before using it. Botox is far, far less dangerous than Tylenol-or any other pain medication. My GP agrees.

[REP]

39. Topamax if Botox isn't covered

I'm in kidney failure, and I have chronic severe migraines (classic and optic). I take Topamax and Elavil, and am down to 1 migraine a month (used to have about 1 migraine-free day a month).

[ThomCat]

42. I take Topamax.

It definitely reduces the severity of the headaches, and it gives me periods where I go days without a headache. I'm definitely going to be increasing my dose because of all of this.

It would be wonderful if increasing my dose of this one med could have dramatic results. That would be incredible.

[undeterred]

64. Topomax worked for me but its so friggin expensive

I can't afford it at all without insurance.

[ThomCat]

66. That is a serious issue for me now.

:(

But we'll see what happens.

[CaliforniaPeggy]

3. My dear ThomCat!

Oh sweetie, what I wouldn't give to have you whole and well...

I'm so sorry.

Please gripe all you want...I'm here for you...

:hug:

[ThomCat]

8. My dear CaliforniaPeggy!

:hug:

Thank you very much.

[blueraven95]

6. ...

:hug:

feel free to gripe whenever.

[ThomCat]

9. If I did that I'd never get to post any nice stuff.

:P

I like posting the nice stuff more. :hug:

But thank you very much. I really appreciate the hug and moral support.

[blueraven95]

12. well,

maybe there's a way to mix the two.

I'm not sure what it is, but it's creating really funny images in my head :D


:hug: :loveya:

[Tuesday Afternoon]

7. sheesh Thom. There has to be a better way. There just has to be

daily migraines. Holy Shit!

Do you have sinus, too?

[ThomCat]

13. Yes, I am going to need sinus surgery, but it keeps getting pushed

back another year or two. It's very, very low on the priority list. :(

I wish there was a better way. But the only effective treatment so far is medication, and they're expensive and dangerous, so the insurance company rations them very strictly.

[Tuesday Afternoon]

14. Thom...

I think that is a wrong way to look at it. I think the sinus might be aggravating the migraines.

[ThomCat]

17. That was the first thing all three doctors thought

so I went through a lot of tests, MRIs of my sinuses, poking and proding, and they don't think that my sinuses are seriously contributing.

The consensus is that doing sinus surgery while I have so much uncontrolled pain would not be worthwhile.

If ANYTHING links the migraines back to my sinuses I'd have them drilled open and cleaned out immediately.

[Tuesday Afternoon]

18. ok...let me ask this:

How often do you have sinus headaches?

[ThomCat]

21. That is hard to say.

That type of headache gets masked by the morphine. I probably don't feel most of them.

I mostly know about my sinus problems when they become ear or respiratory problems. That happens about once every other month. :(

[Tuesday Afternoon]

23. I did not know the morphine would not control the migraines...

did not know that.

[ThomCat]

25. Morphine doesn't control migraines.

Morphine does absolutely nothing for migraines. But it will mask sinus headaches. It will mask tension headaches too.

I take the morphine for other things, and because I have the morphine in my system it hides a lot of other pains that I would otherwise be aware of.

[Tuesday Afternoon]

27. hmmmm....

let me study on this and ask around ... I hate it for you that the OTC stuff is messing with the kidneys. That is not good. not good at all.

Shoot me a PM sometime. I don't want to get your thread locked.

Me---->:hug:<----You

[GoddessOfGuinness]

11. Is there any chance that thiamine supplements could help?

I read that thiamine reverses kidney damage in people with type 2 diabetes. http://news.bbc.co.uk/2/hi/health/7796073.stm

ThomCat, I'm so sorry that you suffer all this pain. I wish I could take it away. Gripe as much as you want, ok? :hug::hug::hug:

[ThomCat]

15. I don't know, but I'm sure I'll find out.

:)

Thank you. It's always helpful to have notes and questions when I go into appointments.

[InternalDialogue]

16. ThomCat, you're an incredibly strong person.

I can't relate to the pain you must endure daily, but you still manage to come here and offer your friendship to everyone anyway.

I've got nothing to offer but a hug and my wishes for strength and patience. :hug:

[ThomCat]

20. A hug and good wishes are strong stuff.

:)

I don't know if you are aware home much good they do. It's those hugs and good wishes that make it worth dealing with all of this every day for a while longer. As long as I've got that strength coming in I can deal with this stuff.

:hug:

[Rising Phoenix]

93. Thomcat.....

my thoughts and prayers are with you always, I hope that your docs will find some safer way to ease your pain. Physically, new medicines are always coming up....but if you ever need to talk about the mental anguish you feel when your body betrays you, please know that I am here for you. I will be all night......

[ThomCat]

94. Thank you.

:hug:

I wish neither one of us knew what that was like. But unfortunately we do. :(

[Fire Walk With Me]

19. I know that you don't believe in prayer, but I'm going to pray for you.

I can't stand that you're suffering so.

Hang in there. Edit: Call them good wishes instead of prayers if it works for you :hug:

[ThomCat]

24. I don't mind if you pray for me.

I believe that we react strongly to any kind of emotional or moral support because we are inherently such social animals. So knowing that you care is a big help. If that care comes in the form of a prayer, that's cool.

:hug:

[Fire Walk With Me]

26. I'd send pizza and underwear models if I were rich.

In other words, pray for me to get rich, so I can send pizza and underwear models :hug:

[orleans]

22. i have a (stupid?) question

why can't you just buy the migraine pills that the insurance company won't pay for?

i don't have insurance and i have to pay for all my drugs myself. (are they very expensive?)

also--maybe you could explain the situation to the doctor--sometimes my doctor gives me some of the samples the reps give him.

[ThomCat]

28. With insurance, I pay $4 per pill.

without insurance my pharmacist quoted me a price over $100 per pill.

If I could buy them in Canada I could afford to buy some, but not enough. They're going for around $12 Canadian per pill.

My Neurologist regularly gives me samples, but the samples contain 1 pill, and they don't get very many of those samples.

[orleans]

31. $100 PER FUCKING PILL! OMFG!!!

these drug companies piss me off to no end!

when i was younger i used to get migraines every now and then and i'd do a trip to the emergency room--a shot of darvon usually knocked the migraine out. maybe your insurance could/would rather pay for that?

i'm really sorry to hear you have to go through that. and what the over the counter crap is doing to you. that is just so wrong.

on edit: and this post was for you. i think.
http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=105&topic_id=8369522&mesg_id=8369642

[noamnety]

29. I'm wondering that, too

I'm guessing it comes down to finances (always does, in my experience). Would the doctor let you take more than 12 of the good pills a month if it weren't for the insurance issue? Or is that a limit healthwise, as well?

(and if you could pay for them outside of insurance, how much would the per pill cost be?)

all very nosy questions which you don't have to answer ... I'm just wondering if it's in my budget to cover at least one headache a month for you.

[ThomCat]

32. There is a health limit on how many anyone should take.

it's somewhere over 18 per month, but I don't know the exact number.

Now that I've already had a stroke (still to be confirmed, but still the probably explanation) I'm very high risk for complications from these pills because they dilate veins and arteries. So I'm sure my doctor wants me taking as few of these as possible, so the number for me is lower unless I'm willing to risk another stroke.

Cost is very, very prohibitive. :(

But, there is no alternative medication out there to use instead. So the only way to avoid risks is to put up with migraines. Not an acceptable option.

[QueenOfCalifornia]

30. ...

Jebus....

I have the worst hives and have had them for a week now - scratching myself bloody and raw in spots... but your post made me want to cry. The insurance company is insane. You need the meds, period.

I hate shit like this.

Hugs and love to you ThomCat. xoxo :pals:

[ThomCat]

34. I hope your hives go away and give you some rest very soon.

:(

I get compulsive itching because I am alergic to narcotics. I break out in hives when I take my Morphine unless I take high doses of antihistamine with it. I take Hydroxazine, which is the strongest med out there for itching.

I know how horrible itching can be, and that's something I have under control. You have all my best wishes that you get this cleared up and under control.

:hug:

[Flaxbee]

33. Oh ThomCat

Gentle :hug:

Gripe all you want to -- I can't even imagine how frustrating this must be for you. I am so sorry. If it were me (having never had a migraine, mind you), I'd try to preserve my kidneys. What the hell is causing you daily migraines? How awful!

[ThomCat]

36. I wish I knew all the triggers, but even the ones I know

can't all be avoided.

Changes in the weather trigger my migraines. Sudden temperature changes (going from indoors to outdoors, or vice versa in summer and winter) triggers my migraines. Anyone nearby wearing strong scents will trigger a migraine. When I'm out in public in NYC I can't avoid everyone who is wearing perfume or cologne. If I don't get sleep (because of pain/insomnia) then exhaustion can trigger a migraine.

To be honest, the blinding pain from a severe migraine is so bad that I'll do anything to make it end. If I have to take a pill that I know will slowly kill me I'll take it. Anything is better than suffering a severe migraine, especially every day.

[Flaxbee]

41. That just blows beyond comprehension

I know this sounds weird - but you really seem to be super-sensitive, so, is there any chance any doctors or teaching hospitals would want to study you (and then maybe you'd get free meds, or some experimental relief)? I'm not suggesting you're a guinea pig, but maybe your case is interesting enough to warrant research.

Another :hug: I wish I could make it better, ThomCat.

[Tuesday Afternoon]

35. one more question...

do you get the aura?

[ThomCat]

37. Sometimes.

Sometimes colors look odd. Blue is the color that most often looks odd and alerts me.
Sometimes I notice that I see more light with my eyes closed than with them open because of the lightning in my eyes.
Sometimes I notice that I am becoming sensitive to the amount or type of light around me.

But often I don't get any aura at all and I just get suddenly hit with a crippling burst of pain.

[Tuesday Afternoon]

38. on a daily basis??

what about vomiting and nausea?

[ThomCat]

43. I get the nausea regularly

but rarely the vomiting. But I carry anti-nausea and anti-dizzyness drugs with me because of the severity of those two size effects.

[ThomCat]

45. delete. Wrong place

[REP]

40. Daily use of NSAIDs is a recipe for kidney damage

Trust me, you wouldnt like kidney failure. It sucks worse than migraines (I'm in kidney failure and I have chronic severe migraines, and I can tell you which one I could live with).

[ThomCat]

46. Wow! That says a hell of a lot.

:(

I can't imagine anything worse than living with these migraines every day. But that may just be a lack of imagination on my part. Things can always be worse.

[Callalily]

44. You have a right

to gripe, and we are all here to listen, and help when/if possible.

Hopefully your docs can some up with a solution.

*sigh* All I can offer you is understanding and hugs. :hug: :hug: :hug:

[ThomCat]

47. Thank you.

:hug:

:loveya:

[SalmonChantedEvening]

48. Damn son

:hug: :loveya:

You gripe on. Vibes for healing, for strength and vibes of friendship as well.

[ThomCat]

50. Thank you.

:hug:

Right when I'm going out on disability and my insurance is lapsing or in question is not when I need this to be happening. :(

But I guess I'm going to be seeing a lot of doctors and paying a lot of co-payments in the next few weeks. On the plus side, I got my first check for short term-disability, so I am not totally broke, but it's rent money I'm using to see doctors, so more fun choices. :P

Please keep the good vibes coming for a while longer. :loveya:

[malta blue]

49. my dear friend!

:hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug:

[ThomCat]

51. Yes, you are a dear friend.

:loveya:

Thank you. :hug:

I will deal with this, probably get used to functioning with migraines, and keep moving forward. I'm finding out that I'm pretty good at keeping moving forward. :)

[BlueIris]

52. No advice as yet, but that SUCKS.

Kidney issues are one of my biggest fears.

[ThomCat]

53. I hope that fear never, ever materializes

into anything real. :hug:

And, I hope my current issues are not too thorny to work out. :(

[MissHoneychurch]

54. *HUG*

:hug: :loveya:

Not much I can offer beside some *over the ocean love*

I am again and again impressed how you deal with your problems. I guess I would just hide underneath my covers and never come out again.

[ThomCat]

67. I would love to never get out of bed.

:(

I just found out this morning that I got an abnormal liver function result from my last blood test. So now I have both liver and kidney problems to follow up on. These problems never end. :(

But I just have to tackle things one appointment at a time, and one change at a time. That's all I can do.

[TZ]

56. I'm sorry Thom.

That seems to be the problem with so many of us that suffer from chronic issues..the balance between short term pain relief and long term damage.
Its why I fought so hard to be on the much more expensive interferon. Short term the chemo drug Hydrea works okay but it the long run the interferon is much better for my body (and actually controls the disease itself, not just managing the symptoms)
:hug:

[ThomCat]

68. I'm so very glad you won against your insurance company

in that struggle. :hug:

I hope I have any success at all to come back and share. :)

I just found out an hour ago that my last blood work came back with abnormal liver function. So now I have to go chase this down to and find out what's happening to my liver. It never ends. You are absolutely right about balancing short term versus long term. But sometimes I don't know if there is a balance. :(

[lightningandsnow]

57. That sucks.

Hope your doctor can figure something out.

Feel better. :hug:

[ThomCat]

69. I'm going to try.

:hug:

[justabob]

58. that is awful

I am sorry you have to go through that.

:hug:

[ThomCat]

71. It is horrible to think that Anyone has to live like this.

And even worse to consider that many people would consider me fortunate because they can't even get to see a doctor. :(

:hug:

I hope stuff like this motivates all of us to really push for universal healthcare. :)

[justabob]

83. indeed

I hope you can find some relief soon.

[Bertha Venation]

59. Thom

:hug:

[ThomCat]

72. Right back at you.

:hug:

:loveya:

[Dystopian]

60. Thom, so sorry...

:hug:

I want you to feel better...I also deal with chronic pain and mirgraines....and my MD told me that the Vicodin wouldn't touch the migraines. He was right. I just don't know what to say...I really feel for you...

I'm in that circle of love for you...:grouphug:
Sending love and light...


peace~

[ThomCat]

74. Thank you very much!

:hug:

Your doctor is right. I've had so much morphine in my, right after surgery, that I was barely conscious, and I could still feel an entire migraine. Nothing stops a migraine except migraine meds. :(

Now we just need cheep, safe, available migraine meds. What are the odds that someone's going to develop one, and the drug companies would let it become available? :P

[graywarrior]

61. The cure is worse than the illness

You need to take care of your kidneys. They're are the seat of your health. That's all I know.

Take care of yourself, dude. You are much loved.

[ThomCat]

75. You're right.

With the new news from this morning, from the latest blood tests, I now have to worry about my liver function too. So now I'm going to have to find out how to baby my liver and kidney, and I'll have to suffer whatever else it takes to do that. :(

:hug:

Wish me luck. I have a strong suspicion that life is going to really suck.

[LynzM]

62. Love and hugs to you, Thom....

:hug: :hug: :hug:

[ThomCat]

76. Thank you very much!

:loveya:

You know, JennaLaw lives less than an hour from you. She's always coming down here on weekends to hang out in the city and stay at my place. But she's offered to get me up to CT any weekend there's a reason. :)

[LynzM]

90. Cool!

I'll definitely let you know next time we're having a shindig; we'd love to see you guys! :loveya:

[RetroLounge]

63. Sending you vibes, my friend...

May this be the year you catch a break. You've earned one...

:hug:

RL

[ThomCat]

77. I would love to be able to catch a break.

Unfortunately, with my luck it would be a break in my right arm. :P

:hug:

It would be wonderful if many, many of us could all catch some good breaks this year. There has been so much doom going around. It's really about time for that to change.

[lukasahero]

65. Aww, Thom

I wish I had something more to say than I'm sorry. Sending hugs and good thoughts your way even though I know it's not enough. :hug:

[ThomCat]

78. It's definitely enough.

It has to be. It's pretty much all I've got right now. :P

:hug:

:loveya:

Somehow at least some of this will improve. My doctors are too good to not have any options. They might not be perfect options, but there will be something. :)

[lukasahero]

91. When people talk about heroes,

they're talking about people like you: those who, in the face of overwhelming adversity, somehow manage to keep positive and brighten other people's days.

:loveya: too.

Happy New Year, Thom. I hope 2009 finds that perfect option for you.

[Haole Girl]

70. Have you tried bio-feedback, Thom?

Please don't damage your kidneys. Life on dialysis is not a very good quality of life. :hug:

[ThomCat]

79. No. I never have.

It has been recommended repeatedly. I even had a referral to specialist to teach it to me, but she decided to go to Europe for a year and my insurance couldn't find anyone else they'd pay for.

I should check into that again.

[redqueen]

73. ...

:hug:

I know you're not looking for advice, but if a friend can go to Mexico for you, you might be able to get more than 12 of those prescription pills. Not that I know if that's healthy, mind...

[ThomCat]

80. ...

:hug:

[Dangerously Amused]

81. Breaks my heart.

I hate it when bad things happen - and keep happening - to good people. :cry:

I'm so sorry, Thom. All my love to you and the kitties. I hope 2009 is going to be a much better year for you.

:hugapalooza:

[ThomCat]

85. I hope 2009 is an amazing, wonderful year for all of us!

:loveya:

Thank you. :hug:

[Tyrone Slothrop]

84. A possible migraine help

This might sound crazy -- and it might not work, BUT...

I, fortunately, don't get migraines; however, I know several people who do. On advice from one of our friends, a few of them have tried a fairly simple home remedy that seems to have actually worked. (Two of the worst sufferers haven't had a migraine in months.)

Anyway, when you feel a migraine coming on (or have one), you use a neti pot to flush out your sinuses -- but use ice cold water instead of the usual lukewarm. Supposedly, something to do with the cold in your sinuses will really dull the migraine.

Hope this helps. If it does *anything*, it'll certainly be better for you than inundating your system with more chemicals.

[ThomCat]

86. Interesting. Time to go buy a Neti Pot.

It's certainly worth trying, and I should get a neti pot in the house anyway. :)

Thank you very much. :)

[Tyrone Slothrop]

87. You're quite welcome

Hope it helps. Sounds like you've got enough problems to deal with as is.

:hug:

[SacredCow]

88. Big hugs to you ThomCat.....

:hug:

[ThomCat]

89. Thank you, SacredCow.

:hug:

[fight4my3sons]

92. ((hugs))

:hug:

I suffer from migraines too. I've been on Topamax for a few years because I can't take the other migraine meds due to the risk of stroke (I have a blood clotting disorder). My neurologist has increased the Topamax a few times over the years and it works well for me. I was getting about 5 migraines a week, now I get about 3 a month. During the time that I have been on it my husband lost his job and we lost our insurance. We would have never been able to have afford the Topamax out of pocket. My neuro helped me out with samples. I don't know what I would have done. I'm so sorry you are going through this. Migraines are no fun. I don't know anything about kidney damage, but I hope that you and your doctors can get it all worked out soon. You certainly deserve a brighter healthier new year. :)

[ThomCat]

95. Thank you.

:hug:

I am glad your migraines are mostly under control. I hope they become much more infrequent and minor.

I now have to make it a priority to see my doctors immediately, so hopefully things will definitely work out better for me very soon. :)