LP-headache, I want to scream

[Sunnytoday]

It's worse when I stand up. The only thing that makes it better is when i lay on my side. Yes, it's worse than yesterday if that's even possible. I have migraines, and this is the worst one I've ever had in my life. Just tell me how to get rid of it please. who do i call, NYU or the lab?

What is causing it? If it is leak would you see it?????? my mom wants to know. I'm laying down now, and my handy laptop is on my tummy,

If I stand up I get short of breath and gaspy, i think it's from the pain.

i hope you don't mind i started a new thread, i needed you to hear me.

any words of advice would be welcome.

i just want to be done with this, i can't scream becuase it would hurt more. It hurts and is even hard to swallow. My eyes are still a bit swollen but they do look a lot better from yesterday.

the only tiny bit of relief i can find is to lay on my side. my back still hurts that way and sounds like popcorn when i breathe but ti's a lot better than that awful pain in my head that just makes me want to breathe funny, and throw up and everything. I took my migraine meds this morning, Frova, and i haven't felt anything from it yet. Bummer.

not very sunny at all, in a lot of pain, and blurry eyes,
~Sunnytoday~

[yorkieville]

Hi, Sunny Bunny.

You've gotten the word here, you need that blood patch.

So, tomorrow I expect your folks to call and demand it!

Lots of Love,
Sheila

[Salamander2]

I'm worried for you.  I'll send prayers and healing thoughts your way.  But a trip to he ER might be helpful too!  If for no other reason than to reassure all of US here.  :)

Sallt

[Amyloo]

Thinking of you and praying for you my dear.  Here's a favorite scripture:  "The prayer that is said with failth will make the sick person well.  And the Lord will heal that person".  James 5:15..  Remember, He is on your side.  Love to you, Amy

[Sunnytoday]

wonko.... great idea... chicken noodle soup here I come.

Doni... I will. Thanks! now if I can only get my little sister to stop bouncing her big huge bouncy ball down the hall and yelling, life would be even better, right?

Thanks...
~Sunnytoday~

[doni54]

I'm praying that you will feel better soon.  Enjoy your movie with your "fiends"!!!!!!

Love & Hugs
doni

[wonko]

blend the soup and then use a bendy straw!

[Sunnytoday]

hahahah.... thankfully my local FRIENDS... don't read this.. they wouldn't appreciate being called fiends. Gracious. The spelling is atrocious.

~Sunny

[Sunnytoday]

quix, deb, laura, and rena... and  everyone else....thank you.

Still same NO bettter. Still laying flat. Dumb head-ache.

A question:

Anyone out there figured out how to eat soup while laying flat on their back? Smile.

Well, I've made it three full days, either this pain is getting normalish or now i'm just getting fuzzy. My folks say i go gray when i stand up to go to the bathroom and then i return to a normalish color when i lay down.

It's Sat. so i was good and didn't post Friday night.

I'm glad you guys say this is going to end. Becuase if you didn't, well....

I'm thinking today i'll have to figure out something fun to do beside stare at my why ceiling... and you're right my computer doesn't help any. I do feel bad missing most of the past two weeks and not welcoming anyone or anything. :+) I think I'll take up your ideas and dig out some ice-cream and see if a fiend or two can't come over for a movie. Hopefully they won't mind my crazy hair.

TTYL,
~Sunnytoday~

[Lulu54]

Rena is absolutely right - if you are reading this on Friday night turn off the computer and stop adding to your strain.....  I will be anxiously waiting to hear froram you on Saturday and hoping it will be better news.  - Laura

[Rena705]

I agree with Quix honey...you need to STAY LYING DOWN!  You ONLY GET UP TO PEE or poop and then you go lie down again!!  When you do get up you bend over at the waist and walk to the bathroom in this position...you want to keep your head below your shoulders for the most comfort ok?  You need to relax and put in a good movie and have little stimulation...get off the computer...you need to have your head down...not tilted toward your tummy...you need your eyes to rest...you need to rest.  I know it is incredibly boring but if you do take some of the pain meds that the dr. prescribed, while I don't honestly think they will do anything for the pain they may relax you and convince you to sleep and at this point I think it would be the best thing for you.
Ok... I am finished sweetie but please try to relax and just lie still ok?  I am sure you will be fine but it does take time and your ability to remain still is also going to make you heal faster ok?

SO...take your pill...go do a pee...lie down and shut off the computer and tell Mom to take it away for tonight and we will talk to you tomorrow ok honey?  We will all be here thinking of you but you won't miss anything I promise and think of how much more you will have to look forward to reading tomorrow when you get up ok?

Goodnight sweetie and have sweet pain free dreams ok?

Lots of Gentle Sunny Hugs,

Rena

[Deb61]

You may me laugh, even when you're in pain!  You are such a sweetheart!  

I feel for you, honey.  I've been there.  As soon as Monday morning 8:00 rolls around, I'd call NYU.  I think as soon as you call, they'll set you up with a bloodpatch in 'Bama.  This will provide instead relief and you'll be back to feeling half-way normal (whatever that means, huh?).  

Try to keep your spirits up, it really does help.  Don't let yourself get upset.  I remember crying my eyes out one day, and it really made things worse!!!!!!!  I can't think of any other time that I was in such hideous pain, either--and I've had two babies and have had a major surgery!!!!!  Remember to keep those spirits high--watch comedies, eat your favorite flavor of ice cream, have someone paint your toe nails, and by all means write to your friends on this forum!!!!!

:)  Deb

[Quixotic1]

Stay flat as much as possible.  Tell you parents that I prescribe "Being waited on, Hand and Foot, for the next three days."  If the headache doesn't begin to ease up, you will need a blood patch.  Put in a call to Dr. Kister.  Let her/him know what has happened and that they let a resident do the patch and that he has denied that you could have a spinal headache, because he is too good.  Ask if they would intervene on your behalf to get the blood patch done under fluoroscopy, if you need it.  

Take care, hun, this will pass.  I have had one from a botched anesthesia and I do know what you are going through.  It's what I use as my "10" when I have to rank my pain level.

Everyone is correct.  If you ever feel that you are not in good medical hands, you have the absolute right - even in the middle of a procedure - to tell them to stop and that you want a different doc.  You also should not let this resident do the blood patch.  If he is dismissive, then he is being taught to be that way, and we see where all the arrogance comes from in the neurology specialty.

We need never accept medical care from a doctor who is uncaring, seems incompetent or who insults us.

Quix

[Sunnytoday]

Wow.... aren't i rude. I MEAN"T TO SAY..... you CAN boss away. ooooooooppppps.

I'm typing with my 'puter on my tummy. Doesnt exactly lead to great spelling or great vision of the screen.

I'm so SORRY.

I LOVE you all, and why would i post, UNLESS to have you all boss me around and tell me what to do, comfort me, etc.

GAAAKKKK.....
~Sunnytoday~

[Sunnytoday]

checking in here so you guys don't APB me again.

You can't boss away, i will try to listen, no promises, my folks take good care of me though.

Is chills normal with this kind of head-ache,

On a scale of one to ten, i've got a head-ache of eleven. I've only felt pain this one twice in my life, and that was when i broke a bone and had to have my gallbladder removed. Am i describing the pain ok? To be specific. Very, very bad.

Doc. number three called in pain meds. Am praying they work.

Mom didn't want to call NYU becuase she didn't think they could do anything down here, with them so far. I away, i disagreed, but don't feel like arguing... if i think in more than one or two sentences i either laugh or cry.... and that's when i'm flat. Standing up, i moan or yell or just fall over...

Very, very long week-end ahead. Please, don't worry to much. I hate to worry you.

We will hang in there, and if it's not better, we will call again. And i think maybe Elaine gave me an e-mail address for NYU? If i'm not too fuddled i'll use it and maybe i'll get a reply on monday.

~Sunnytoday~

[Salamander2]

I hope you don't get tired of being bossed around, but GO TO THE HOSPITAL.  I havn't been around enough to know everyone's story, but I don't know of many who had a headache for more than 48 hours who didn't need a patch.  

Especially since you have additional issues,  I think an medical opinion about how much your head hurts is a good idea.

I have no idea if it a painful procedure, but even if it is for a few minutes, it would be worth it to get rid of that terrible headache.

Sally

[yorkieville]

I hate to disagree with Elaine (sorry Sweetie, you know I love and respect you) but a blood patch is not supposed to be painful. I had one and it was NOT painful. If it is painful, they're doing it wrong.

Believe me, this skinny old body feels pain intensely and they did give me anesthesia before the blood patch. I felt better, after the blood patch almost immediately.

Sheila

[nncdalton]

I am with Fluffysmom. You need relief and if you were a dog yelping in pain you would get help so call NO GO! to the Dr and demand something be done. BTW after all of this is over, you need to do a formal complaint against the Dr who did the puncture and then the hospital for that seeming to be their standard of care.


I do hope that you get well soon.

Chris

[doni54]

Oh, sunny, you sound so totally miserable.  I agree about you calling the Dr in NY and letting him know what is happening with you.

I'm sending gentle, soothing thoughts to you.  I hope the pain will lessen shortly.

Hugs
doni

[Fluffysmom]

Maybe you should try doctor #4?  I really don't think you should have to be in so much pain.  I kind of agree with Sheila's anesthesiologist.  I don't know about the danger part of it, but I see know reason to be in such excruciating pain.  

This is the first time I've heard about a spinal headache happening DURING the LP, though I admit I'm no expert; far from it.  It just seems wrong, and it also seems wrong, this "wait and see" attitude when you, our friend, is lying there in PAIN.

I don't understand why they want to put off doing a blood patch.  Correct me if I'm wrong, anyone, but I think it is very low risk and high benefit.  I don't understand having a person go through all that pain!  

The pain is caused by loss of CSF pressure.  If it is not improving, when you are lying flat and drinking lots and lots of fluid, then it seems to me that the leak is still there, and should be dealt with.  To leave you in pain seems barbaric.  Maybe they don't have anyone that is good at doing blood patches.

Have you called NYU to get their opinion?  I've been worrying, too, because I remember how badly mine hurt (and I was home alone!), and it sounds like yours is even worse.

If your pain is getting worse, please consider calling someone else for another opinion.  Especially if the pain medicine doesn't help much.  I want you better!  

Hugs,

Kathy

[monotreme]

Hi Sunny.  Did you see my PM from last night?  I think you should call NYU and have them tell Dr. Kister that you have a severe headache and the neuro in Alabama thinks it is just a migraine.  Ask if he thinks you should go to the ER??

If you don't want to call Kister, then go ahead and go to the ER in a different hospital if yu think there is a good one out there.  Like I told you, a blood patch to repair a leak is painful so NO RESIDENTS and SEDATIVES prior to the procedure.  

Tell them you have scoliosis and possible spina bifida.    I am off to go to get medicine for my son who needs a root canal for an infected tooth.  I will be back later.  I am concerned that  once you get into the weekend, the hospital care will be none too good.

If you had to rate your pain fon a scale of one to ten, ten being the worse, what is your number when lying flat.  If you answer this in the next ten minutes I will still be here.
Elaine






















Take care Sunny.
Elaine

[yorkieville]

Sunny,

Thanks for responding to my message. I was worrying from the time I got up this morning.

I hope Doc#3 is right.

Hugs,
Sheila

[Sunnytoday]

Hmmm... was i too upbeat, I've got that problem?

laura. My head-ache is getting WORSE.

I'm staying flat though, as flat as a board. And am tearing up as i write this from the pain. which is quite a bit better flat than upright. I feel terrible for being see-through, but to be honest, yesterday i wanted to scream and today I AM yelling when I stand up....

~Sunnytoday~

[Lulu54]

Sunny,
Seeing your post does put a smile on my face, not because you are in pain but because you are checking in.  I think an APB was put out for you a while back on the board.... glad you are progressing even if it is slow.

stay flat,
Laura

[Sunnytoday]

sorry, no caffeine, my heart can't take it, it sorta trips out and skips beats and stuff.
Thanks for the ideas though. I like the hot packs and the ice packs and the sun glasses, etc. Will use them.
TTYL,
~Sunnytoday~