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 Shunt pain?

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DMajorly
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PostSubject: Shunt pain?   Fri Jun 14, 2013 2:28 am

Hello all, I had my VP shunt placed just about a month ago. I felt the tube in my belly but the valve (lump on the side of my head) didnt really bother me. The last few days its been throbbing and feels tight its unlike my normal headache and it seems to be that valve. Gosh I hope its not moving, maybe its just settling in.Has anyone experienced this? I was reading about "shunt headaches" maybe thats what it is.... Its not fun, I have my normal headache and this on top of it, it got worse today so I caled the neuro but havent heard back, they are probably sick of me. Do your shunts cause other headaches at times?
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PostSubject: Re: Shunt pain?   Fri Jun 14, 2013 2:44 pm

I have an lp shunt, so I can't address this one.  But do keep after your NS.  Call them back today if you haven't heard from them this morning.
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PostSubject: Re: Shunt pain?   Fri Jun 14, 2013 7:09 pm

I have a vp and for it to be causing pain means your Neurosurgeon needs to be checking it. For it to be giving you pain and feeling tight could be an indicator of a problem. Keep ringing your NS and make sure he investigates it. You shouldn't be able to notice your valve in your head unless you're washing your hair.
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PostSubject: Re: Shunt pain?   Sat Jun 15, 2013 5:07 pm

eeeek, my neuro thought that the tegretol may have been causing more pain instead of helping the pain so he told me to stop it. I was only on it for a few days and it started the day after I took it for the first time, it just seems odd to me that it would do that. Its stilll throbbing some its weird though its not constant just randomly jolts of it today.. I have to call them monday and let them know how im feeling. i would feel more comfortable if they just took a scan of my shunt or something, I just feel like something is off with this.
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PostSubject: Re: Shunt pain?   Mon Jun 17, 2013 3:13 pm

I have to say that I got an immediate headache on some meds, so it wouldn't surprise me. If it's new, then it definitely could be contributing. I'd call neuro if it hasn't gotten better yet, so they can check shunt asap. Good luck, and keep us posted!
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PostSubject: Re: Shunt pain?   Tue Jun 18, 2013 3:48 am

I called neuro again today, he now wants me to try gabepetin again only this time 600 mgs 3x a day.. im tired of feeling like crap. I feel like my head is going to explode its been throbbing all day, the shunt pain itself isnt as bad just the same ol lovely busrting of the head feeling. HOW does anyone do this for the rest of their life!? I hate to be such a downer but everthing sucks when your head hurts. My mom tells me I need to get over it and live my life and stop thinking about my head, stop letting it get me down...... i really dont know how to do that when it F-ING hurts. how do you stop thinking about it. I know in a way she is trying to help, and it has taken over but how do you forget it when its banging on your head?
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PostSubject: Re: Shunt pain?   Tue Jun 18, 2013 2:52 pm

Right, people don't understand that this isn't something we can fix or get away from. I wouldn't wish this on anyone, but sometimes I wish some people could experience it just for a day..of course it's raining today and I'm very cranky..lol.

I will say that spreading out doses can help with side effects and will make med levels more consistent. It sounded like the Tegretol was bad news, so I guess at least they're trying something. Just make sure you're keeping a good log of symptoms and changes..hopefully they'll be able to figure something out and symptoms will improved once Tegretol is out of your system.

Good Luck!!!
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PostSubject: Re: Shunt pain?   Tue Jun 18, 2013 3:57 pm

I agree with Julie, it does sound like the Tegretol was not the right medication for you, and it's good that your Doctor realised that quite quickly on your consult. I myself take 600mg Gabapentin three times a day, not for the IIH, but rather to treat the nerve damage caused by the LP's and LP shunts. It has made such a difference to my pain. I do know that some IIH'ers on Gabapentin for their headaches have noticed a difference.

Staggering the pain medication through the day, I've found is very effective, because it keeps on top of the pain, and you can function so much better. Many of us have also found that a medication combination has worked so much better. So if you are still experiencing some pain even on the Gabapentin, you could talk to your Doctor about a pain relief combination, and if he thinks that it would be suitable for you and more effective.
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PostSubject: Re: Shunt pain?   Fri Jun 21, 2013 2:12 pm

Thanks ladies Smile Heidi this gabepentin is making me so tired! Does it make you tired? Last night I fell asleep on the couch and my hubby couldnt wake me up even to go to bed I was out! I feel like im in a fog!! If it helps im going to stick it out but I hope this tiredness gets better!
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PostSubject: Re: Shunt pain?   Sun Jun 23, 2013 6:31 am

Gabapentin can indeed make you feel fatigued.  It takes a bit to get used to it, but I have found that the gabapentin, because it works on nerve pain, is a better med for me anyway.  I suggest that you try to hold on and give it a chance to work.  If the side effects are too much, there is an extended release form that is milder.
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PostSubject: Re: Shunt pain?   Mon Jun 24, 2013 5:05 am

i just realized i posted this under the partners side im sorry :( im a little bit of a air head!! i am not sure if the gabepentin is helping i felt ok yesterday and today as hell.... hurt all day long seems to be getting more intense. I cant handle the stress of this pain, neasua, dizziness and work! im stressing out because work tomorrow @ eight... and my pains getting worse. usually its a annoying pain all day that I somehow deal with and today is so painful I cant nap I cant watch TV ive been pacing the house and annoying my husband with what do I do now questions. the glare of the computer hurts, but I have to do something! I am at a loss of what to do NS wont touch me until august and my neurologist is trying and im hopeful this gabepentin will help but it hasnt before (when i was first diagnosed) and its not helping yet... need to numb this I dont know how people stay sane with brain pain day in and day out !
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PostSubject: Re: Shunt pain?   Mon Jun 24, 2013 4:58 pm

Do any of the little tricks help take the edge off? If you think it's higher pressure try laying on your side at 45-60 degree angle..support your side with pillows. It can be trial and error, but once you find that 'sweet spot' it's totally worth it. If it gets worse when you're up and you feel like it's low pressure, try caffeine..Dr Pepper gets me through most afternoons anymore. I also swap hot and cold packs. Warm, moist heat is great for relaxing muscles and improving blood flow. I use it on my neck, shoulders, spine, and surgery sites to help with healing. I like cool packs on my eyes and back of my head/neck to ease any swelling or discomfort..it can be helpful at surgery sites too. I was told to use them no more than 20mins of every hour and rotate hot/cold, if you think swelling may be an issue. I know it's difficult, but try to relax. Tension and stress only increases symptoms. I've actually found guided imagery and meditation helpful..I use guided imagery for relaxation when I can't concentrate enough for meditation.

I hope you find something that helps until Gabapentin kicks in..good luck!!!
Julie
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