Awwww. That's too bad. I've been routing for you!!!

it does sound like a low pressure headache since you get relief laying down.

I had a low pressure headache after my LP. it was the worst pain ever and I gave birth naturally with no pain meds!! My neuro suggested I increase my caffeine intake. So, I drank lots of coffee and even drank some high caffeine drinks. He also perscribed me Fiorcet which provided me with immediate relief. i did have to lay in bed for 5-7 days but I was determined since I refused to have a blood patch.

Good luck and hope the headache goes away soon!!
Angie

well, I am the queen of low pressure headaches (lol) and they way to get it to reslove is to lay down flat..for me it was at least 4 hours before I could try and get up without keeling over from headache pain..where as a high pressure headache doesn't get better when you lay down. And yes, lying in bed drove me crazy too..I wish I could help you more but I don't know why your shunt did this. I do remember a woman who told me about a VP shunt she had and said she was playing with her dog and bent over and she had a severe headache but it eventually resolved.

Now, please, please take care of yourself, if you try to push yourself (like I do) I try and think of the consequences and that seems to help me hold off from doing stuff that might not be the best for me (I don't want to sound like I'm lecturing you, I just was so happy that you were doing so well). I'm sorry you are suffering and I hope it naturally resolves, many Blessings, Jazzy

KSMama, I forgot to tell you that staying really hydrated helps, so I'm assuming being in the hot sun was a factor. Jazzy

KsMama,
I wish that you weren't in so much pain, I know that you were doing so well. I have nothing to add to what the others are saying, but that I am sorry that you are so sick and I hope it is for a short time.
Take care of yourself, and blessings, Karen

Wow... overconfidence and excitement strikes again! I think docs should put a special yard work advisory in the post-surgery instructions. Advisory: you will want to leap tall buildings in a single bound... Don't!

Good news is your low pressure HA's should right themselves. Like Queen Jazzy said, lay down and drink lots of fluids. I'm glad you were feeling so good after your surgery. Hopefully you will be good again soon!

Bax

KSMama,

You and I are so similar in our experiences! Both impatient and push ourselves too much. Here comes the bossy part...there is no way you should be in 100 degree weather bending over so soon after your shunt surgery. Bending over so soon is a huge no-no even if it doesn't hurt your tummy. Okay, end of bossy part. If we are as similar of temperment as we sound you are probably really sick of people telling you to lie down and not be so impatient to heal. Forgive me for being part of that group, but know that I have your back.

I have had the headache you are talking about from bending over too much and doing too much - and it is a bear. My NS said it wasn't a low pressure HA exactly, but my brain and new hardware couldn't handle so much bending over and activity. The shunt has all sorts of valves to prevent against overdraining so low pressure HAs shouldn't happen if the shunt is set properly. I was ordered back to bed and spent most of a week there paying for having done too much too soon. And because I am stubborn I have repeated that pattern a couple more times with the same lousy outcome. You would think I would learn. I feel your pain. Pain meds did very little for me in this situation. Laying down was the only way to make it through. Even now I still get what I call "zingers" from bending over, but they go away a few moments after I stand back up.

I wish I had better advice for you on how to deal with this HA. It sounds excruciating. Laying down until it settles may be your best bet.

Spend some time bonding with your bed or couch and take care of yourself.

Bianca

Thanks so much guys - this has just been agony. I think it's almost worse because I was feeling so great for a few days - being unable to do anything is driving me crazy. I've been drinking lots of coffee (and water!) but that doesn't seem to help, so Bianca I think maybe you're right - it's not exactly a low-pressure HA, but just from over-exertion? Either way, it sucks! I've figured out that for roughly every hour I lay down, I can spend 15 minutes sitting up before my HA returns. I really hope this doesn't last the entire week! My NS' office has been less than helpful, they did give me something for the overwhelming nausea, but that is all.

So Bianca - is this a problem I should anticipate every time I bend over or is this just while I'm healing? I sure hope it's not this way forever because that would be a nightmare!

Hey KSmama,

I'm so sorry to hear that you are having to deal with the lousy headaches and nausea :( I totally feel for you, especially wanting to get back into the swing of things. As you know, I ended up battling a yucky infection that is finally under control. My VP Shunt was put in about 12 days ago and my NS said to stay out of the heat as much as possible and I can't do any strenuous activity for another four weeks! I just got my staples out yesterday and they are still trying to determine if I can go back to work yet. I feel fine, but they have to keep reminding me that I just had neurosurgery 12 days ago. lol! When you said 100 deg, I checked your profile to see where you live because I live in Oklahoma and it is hotter than heck here. Stay plenty cool and get plenty of liquids. I can relate to the "cabin fever" feeling as I'm ready to climb the walls myself! Please keep us updated! I will keep you in my thoughts and prayers. Take care, GBF

KSMama,

I still get "zingers" everytime I bend over now and I am about 3 months ahead of you with my shunt - initial placement March 12th and a revision in my tummy on April 16th. I haven't attempted as much bending over as it sounds like you did with the weeding but I can imagine it would be very painful. My NS says the bending over zingers should eventually settle down and (here comes our least favorite line) I need to just relax and give it time. Ugh.

And not to share more depressing news with you, but I get zingers for no reason even when I am sitting still. All "part of the healing process" according to the doctors. I usually get more when I'm tired and it is late at night. Plus, my NS warned me that I would be very intolerant of heat. I have never liked the heat so my husband is fearing for both of our sanity this summer.

I hope the headache is letting up.

Bianca

Just wanted to post a quick update - my headache has NOT let up. I can honestly say this has been the most miserable week of my life!

I called my NS office Thursday, per their instructions, only to be told that my NS & his staff were out of the office for the rest of the week & wouldn't be in until Monday. When I asked the receptionist what to do, she advised me to go to the ER if I was that miserable. I went to the ER (vomiting all the way because the pain was THAT bad) - my heart was racing & my blood pressure was through the roof, so they could tell I was in acute pain. They started an IV and sent me for a CT scan and a shuntogram, to see if something was wrong with my shunt. An hour into the shuntogram, the radiologist told me my NS had called & did not want the test done. He said my body was just adjusting to the shunt, so I should be sent home to relax. Nevermind that I've been in bed ALL week. They gave me a prescription for Lortab, which is a joke, and sent me home.

Since then, I've been unable to keep anything down & my head feels like it's going to explode - honestly I wish it would at this point. I'm in more pain than I've EVER been and desperately wish I'd never had this stupid shunt put in. I spent all evening crying because the pain is unlike anything I've ever experienced and I don't even know what to do about it at this point. It's not getting better, it's getting worse. :-( I've spent so much time laying down that now I can't even get HA relief from that - my neck is completely stiff & the back of my head hurts as well. This is beyond anything I could have imagined & I HATE my shunt.

Oh I am so sorry you are in such agony, I don't understand why your NS would tell them not to do that test since you are in such pain. I would just keep going to the ER if you are in that much pain and can't keep anything down.

First, did they give you any meds for your nausea? Because that really helped me or else I would throw up all day.Secondly, I know laying in bed is driving you crazy, I did it for 6 months until my recent surgery and after my last surgery I could only get up 1 hour per day, yep 23 hours in bed, for two weeks since I had more overshunting..does lying in bed make it better?

Bianca wrote how she had the same thing you had after her Vp shunt...I know this is horrible, the pain is horrible, the vomiting is horrible, if you can stay in bed (yes I know it sucks) to get this under control then it sounds like can get your life back. Now if I can do it, then I absolutely know you can do this (staying in bed until you are better). Jazzy

KSM,

I am so sorry that this is still dragging on with you! I was hoping for a better report. My heart goes out to you. I did feel really bad after my VP shunt for weeks 2-5 post surgical and attributed it to the tubing problem but the headaches were my body adjusting to the shunt. And they sucked. Big time.

I think Jazzy has great advice about getting something to get the nausea under control - you are never going to heal if you can't nourish and hydrate your body. The ER can be a nightmare but if you can get some anti-nausea meds that may be the way to go. My best advice is to do nothing and stay in bed. Which sucks. This is going to be a trial but it may be the only thing that can help. Embrace your inner couch potato. Become a meatball. Only get up to use the bathroom. That's all I did and eventually (after the tubing problem got sorted out) it did get better.

I think we all spend so much time immersed in this PTC world where we discuss shunts, lumbar punctures, and trips to the ER as routine occurences. My family and doctors have had to remind me MANY times that a VP shunt is MAJOR surgery and it takes a while to bounce back. But it is usually worth it. You will get your life back - it may look a little different - but you will get it back.

Keep us posted - I have all of my fingers crossed that you get some relief soon.

Bianca

Well I almost can't believe it, but after another trip to the ER yesterday, my headache is finally GONE! I called my NS' office yesterday and the doctor on call sent me back to the ER for a shuntogram. Apparently the test they'd attempted on Thursday didn't even work - the dye was injected into my skin because the doctor hadn't been able to get it into the shunt itself with all the swelling from surgery. I spent a long and miserable afternoon/evening there, but fortunately had a wonderfully sympathetic doctor. He remembered me from Thursday and was immediately in touch with a NS whom, ironically I was supposed to see before finding my current NS. He had a theory that I was suffering from a migraine on top of the shunt-related headache, and that all of the stress my body was under from the pain was just making the cycle continue. My 2nd CT and shuntogram came out normal and they also ran some tests on my CSF which came out okay. So, he gave me an amazing cocktail of pain medications, Benadryl & regular fluids (because I was very dehydrated!) + anti-nausea medication & sent me home. He said he'd seen too many people get sicker from being in the hospital recently, so didn't want to admit me if possible, but if I still had the HA or vomiting today they'd have to admit me. He also gave me a prescription for Dilaudid and some super strong anti-nausea medication and I went home and went to bed. This morning I woke up HA-free! My husband is making me stay in bed all day because we're both paranoid that the HA will come back, but hopefully this is the end of it.

Unfortunately I learned from the NS at the hospital yesterday that my NS isn't just out of town for the weekend, he's GONE. There is some weird/mysterious thing going on with that, but he apparently won't be coming back at all. So, now I have no NS. I'm supposed to see my PCP this week for a referral to someone else - probably him I would guess. Anyway, my goodness I so hope this is all over with - Jazzy I have NO idea how you managed to stay in bed for six months! This was an ordeal I hope to NEVER re-live. Bianca I don't know how you tolerated 2-5 weeks either, I was at the end of my rope by yesterday, I just could NOT take the pain anymore. Needless to say, I'm going to be scared to do anything for awhile, I never want a HA like this again!!!

I'm soo glad you are feeling better! You sure have been through a lot. And, it's good to know you have had a good experience with the NS you will probably be referred to.

Take care, and take it easy
Bax

YEAH! THis is good news! Sounds like your back on the right track!!!
Angie