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~

[doni54]

I am so sorry, sweetie, wish I had the magic cure.  Sounds like you are miserable.  I would call your GP and ask what to do.  There has to be some way for you to relieve the pain.

You will be in my thoughts and prayers.

Gentle Hugs
doni

[Lulu54]

Ouch! I am so sorry to hear you are having this trouble.  I would  definitely call the doctor that performed the procedure first and if that doesn't work call your GP.  

I hope you feel better soon,
Laura

PS I dont' think your mom would be able to see a leak - it would be internal.  The puncture hole where they did the procedure should be very very tiny and your blood would coagulate at that spot.  I think I have this right...........

[Sunnytoday]

thank you.

i will try to convince mom to call somebody soon. i can't live long like this.

`Sunnytoday

[sllowe]

Sunny,

No, you won't see the leak.  I was told if the headache subsides when you lay down, then it is a leak.

You do have to contact your Dr. or the facility you had it done at.  There are basically 2 options that I'm aware of 1) the bloodpatch, which I hear is quite instant relief or 2) lie flat for 24 hours.

I chose option #2 after my Dr. informed me because it was so horrifying I was already laying down for relief and decided to just stay there and did more than 24 hours though just for extra measure.

Hang in there, and stay flat!!!!!!!!!!
-Shell

[wonko]

Have your mom ask about a blood patch -- I don't know much about it, but I've heard of this as a treatment for the headache.

Sorry to hear about this, I hope it passes soon!  

[wonko]

I was writing at the same time as Shell.  I'm glad she knows more about the blood patch and has more advice.  I know before my LP I read about it and how lots of ppl say it really helps.

Good Luck!

[Amyloo]

Hi,  I have had two spinal headaches and two blood patches.  One was easy, the other more difficult but both relieved headache.  I do have to tell you though that if you don't "patch" it and decide to let it heal on it's own, it can (I repeat "can") take up to a week or so to finally heal.  

When you get up, walk like Groucho Marx.  (Oh yeah, you are just a kid, you may not know who that is!  Just kidding.)  Bend completely at the waist when you walk to keep your spinal fluid pressure even.

God bless you honey, I am praying for you.  And I know how sucky that headache is.  It will get better.  Love to you, Amy

[ohwild]

Go to the Docs now hun ask Mom to take u . x x
CJ :)

[Sunnytoday]

a week?

yuck.

but the thought of a blood patch is almost as bad. no needles back there by them again, ok?

i'm going ti try to stay as flat as possible for a day....so help me if this is still here in two or three days....

i'll try walking bent over, it sounds like a good idea.


i'll check in tonight, ok?
~Sunnytoday~

[Fluffysmom]

I wrote on your last thread about how helpful and easy my bloodpatch was.  I had it done at the same hospital as my LP, but by an anethesiologist instead of a interventional radiologist, who don't perform blood patches anyway, I was told.

Call (or have your mom call) your doctor and describe everything you are going through.  I don't know for sure, but I think that if it's not getting better by now, it might not without help.

For my blood patch, this gentle wonderful woman pediatric anesthesiologis put in an IV (there is a spray on numbing medication if you need it), and gave me medicine to relax me and also some pain medication.  I wasn't really aware of what was going on, but she told me afterwards that she withdrew 20 ccs of my blood, then injected it in my (sterile) back, right into the epidural space.  The blood spreads out and covers the leak, and stops the pain right away.

Keep drinking lots of water; lots and lots, even if you have to walk bent over to the bathroom.  If you have a bowel movement, DON"T PUSH.  If you need to cough or blow your nose, try to do it gently.  Straining puts more pressure on that leak.

I had three punctures (bad doc!), and leaked alot of CSF.  My eyes were affected because of the lack of CSF pressure, or the change in it.   I drank buckets of water, caffeine, and all that, and then called about the blood patch on day two or three, and had it done the next morning.

If you have a blood patch done, make sure it is done by someone that really knows what they are doing, and understands what you've been going through. Ask your Mom to ask questions and demand the best; you deserve it.

Only restoring the pressure (healing the leak) will stop the headache.  If lying flat doesn't do it, then a blood patch will.

Bunches of love,

Kathy

[jensequitur]

Definitely go for the blood patch.  If you don't, you could be dealing with this for a while!

[Sunnytoday]

ack..........

My mom called and i need your opinion, any one reading this can pitch in, ok????

The guy who did the LP was the one they found to put on the phone, yes, the resident. So, Mr. Know It Almost All told my mom that it was just a migraine and i was ok. Of course, my mom told him that it was NOTTTT!!!! He then asked how my back looked and when she said ok, he was about to go and she asked him about a leak and he said that he'd certianly never had that happen to one of his patients. Mom asked him what he was going to do, and he said if i get worse i can come into the ER.

I DON'T WANT HIM TO TOUCH ME AGAIN!!!!!!!!!

Am i ok in thinking this? This guy isn't to great here, what should i do?

Dronking lots, walking so hunched over that Groucho guy would be proud (hey it does REALLLY help, thanks a LOT for that tip!!!)

I'm going to make it, i just don't want to go back to that resident guy...... i'm scared ...... really scared,,,,, ok,,,,, more scared than i was of the LP.

So, now we wait and see if it gets worse.

Thanks for the support.
~Sunnytoday~

[dazedmom]

aiyayayayi!

I don't know anything... but I'll be praying for you!

(And personally, I might call the hospital's ER director or administrator or something.  If they are scared of you, they're more likely to hop to it and help you.)

Blessings--
dazedmom

[Fluffysmom]

You are the patient, the one paying the bill, the one whose body has been hurt.  You have a right to ask for someone else to perform the blood patch.  

Please ask your wonderful mom to call back and ask to speak the supposed expert that watched the resident perform so poorly on you.  Have her explain that it is clearly not a migraine, that migraines don't feel better when you lay down and then feel like you've been hit with a sledge hammer when you stand up (she might want to word that differently).  :o)  Are all residents so full of themselves?

Looking back, the guy that did my LP said I couldn't have a spinal headache already, it would take 3 or 4 days.  He wouldn't listen, so I called my neurologist, my PCP's advice nurse, and anyone else I could think of that might help.  The neurologist said that the doc who did it was responsible, so I called him back, and he gave me a phone number to call.  It was for pediatrics.  I called the neuro again, and her assistant gave me the right number to get ahold of the pediatric anesthesiologist who did my blood patch.

If this doctor doesn't agree to help, then ask to speak to someone who will.  Calling the ER isn't a bad idea; they might have someone working that can do a wonderful job.

Maybe your mom should call the anesthesilogy department.  Heck, I'm just trying to think of anyway to get the pain out of sweet head that should be sunny instead of aching so bad!

Love,

Kathy

[Fluffysmom]

P.S.

Did I say that I think you're totally right in not wanting that self-centered resident?  

Don't let him touch you with a ten foot pole!

gentle hugs,

Kathy

[sllowe]

Sunny,  I feel confident enough to say it's not a migraine.  Talk to a Dr. not the resident Dr.

I see now why you are afraid.  Stay flat for now! Only get up a bit to potty and eat...

Amyloo is right.  This will get better, just takes a bit.

-Shell

[Sunnytoday]

ok, i'm glad that you thought i wasn't being picky or anything, but i seriously didn't want him again. I'm sure he thought i was over-reacting or something during that procedure but well, "oh my GOODNESS" just about summs it up.

thank goodness for lap tops, they fit nicely on my tummy and i'm not going crazy that way just laying here feeling miserable.

I'm calling NYU in the morning, and if they say i need to go somewhere, we shall. If i get any worse we are going somewhere. And if it still feel this bad in the morning, you can bet your last dollar we are also going somwhere. And I like your ideas, Kathy.... I shall call everyone I can get my hands on if this doesn't get better..... that's a nice IF. I'm still hoping it goes away when i lay down. when i get up i, well, yeah... i just wonder why on earth i didn't do it at NYU when i was up there.

Also, if we go back to that place, you get I'm praying my head off for a different doc. In fact, if it weren't so complicated with friendships and possible job possibilities at that very hospital I'd just tell mom to take me to another one of our four hospitals here. Why, oh why did this have to turn out so icky? This was supposed to be short, sweet and easy!!!!! Sigh.

Still here and just hanging out on Medhelp, basically becuase it's either that or start screaming about my head again.

S'funny, i can type fast. but when mom tries to get me to talk, everythings coming out all jumbly. Guess it takes a different part of the brain, huh?Must have mom a bit worried now... She's pushing liquids now, she handing me stuff to drink every so often.

Talk to you later!
~Sunnytoday~

[jensequitur]

It does take a different part of the brain to talk...  Often, I've had problems communicating verbally, but was able to type just fine.  However, I've noticed my typing comes out jumbled - all the letters are inverted, or I'll try to use the wrong word.  This has gotten better, but it's not completely improved.

[Deb61]

Hi!  I'm sorry about the spinal headache.  I'm positive that's what it is.  I had mine for two weeks--I couldn't get the blood patch where I live, so that's why I didn't get it.   Sometimes spinal headaches can last even longer than two weeks.  I felt the way you did, wanting to scream, and actually did!!!!!!  But, as you figured, it didn't do anything but make things worse.  

Caffeine does help seal up the hole.  That's one thing I didn't do much of, because I was off a caffeine completely prior to the LP and didn't want to get addicted to it again.  However, I drank caffeine anyway to speed up the healing process.  The weaning off the caffeine, wasn't that bad.  Are you able to have caffeine?  

Deb

[nncdalton]

If you are not better or it gets worse and you go to the ER please do not forget to wear sunglasses. Make sure that there is no outstanding pressure in the area of the spine or around the head(i.e.hair bows, pony tails, etc. Somthing that can also help is warm steam towels around your shoulders and neck. Don't drink anything too cold and some over the counter analgesics will have the added benifit of caffine, in case the thought of coffee at this stage of the pain you are in makes you want to get sick.

I do hope that you feel better soon. Lay down and do not get up but to go urinate or have a BM and of you do need to have a BM DO NOT STRAIN!

Take care and post as soon as you feel better.

Christy

[nncdalton]

BTW! Looking at the computer screen might not be the best idea. Hang in there, I will be thinking of you and sending you good thoughts.

[Lulu54]

Sunny,
Don't forget you can take caffeine in coke, diet coke, tea, some chocolates ..... it doesn't have to be coffee.
- Laura

[Shellshack]

Just got in from work and checked in on your post : )...I am hoping by the time you read this your feeling better!!  I have heard a lot about the blood patch and all of it has been positive and that it's instant relief.  A good friend of mine, a nurse, told me that IF I got that nasty spinal headache, NOT to wait, to go right on to the ER, and they'd do it and it'd be immediate relief.  I didn't have to go.  And I'm not sure what I'd do if I were in your shoes.  I'm praying for you and praying it'll go away on it's on.  It sounds like you're doing all the right things by laying flat and drinking lots of fluids.  

Hope you're feeling SUNNY again soon!!

Hugs,
Shelley

[mb2815]

Take advice from a two time spinal headache sufferer - GET HELP!  I had a spinal along with general done when I had a kidney removed a few years ago and experience a headache like never before.  I had two blood patches done and until they done the third one under fluoroscopy I did not get any releif unless I was laying flat on my back.  When I was diagnosed with MS I did not think twice about the small procedure of spinal tap.  Boy was I wrong.  It was the same gamet, days of laying flat, drinking caffeine, and taking cafeine pills.  I then received a blood patch in the ER only to be disappointed again.  Two days later, fighting optic neuritis and trying to go through the steroid treatment I was still miserable.  I then went for a second blood patch but the anesthesiologist could not get the needle to thread and I was sent home to return the next day to the pain clinic where a blood patch was applied again under fluoroscopy.  This way they are able to see exactly where they need to place the blood patch and I received instatnce releif.  Be preseistent and dont let them tell you how you feel.  Being diagnosed with MS, epilepsy, and celiacs disease all within a 30 day period has made me realize the need to be an advocate for myself.  Life is too short - wish you well and good luck.

M