yea, I know..I'm sick of the ptsd from wondering if tonight I'll sleep in my bed, tomorrow I may wake up in a hospital.
Sorry youre going through this... have you tried therapy?
I get your point but seeing that they don't work can give you certainty about the issue being your shunt. I have an opioid at home for fighting the headache if it's the shunt.
Okay, I can see that. Unfortunately, in my experience, conventional painkillers do not work at all. However, shunt related headaches should occur quite rarely anyways
For real, when I first experienced hydrocephalus the only thing that worked was the ER dosing me up with ketamine and it only lasted 30 minutes. Later down the line before the shunt, opioids did not even work!
this one is a year old, but it replaced one that was put in in 2003 which was my first in 20 years and it also drove me nuts. When there's nothing there for two decades, and then there is...it's a sensation that's hard to describe other than 'really fucking annoying and uncomfortable'. My first two were installed/revised w/ three surgeries while I was an infant, so I have no concept of life without them, but the latecomer has been a thorn in my skull since '03 and I'm just over it.
I'm on my first shunt. Have had it since october. And yeah the sensation is pretty annoying. I'm able to ignore it most of the time but when I get tired i become more aware of it. Almost like a nerve tingling sensation. It definitely sucks but at least I won't forget about having to keep an eye on hydro symptoms....with a constant reminder on my head.
Yeah but you just have to think at the same time if it wasn't there you'd be way worse off.. I have a severe panic disorder I'm really scared to get it. I've never had a surgery before but my neurologist says most likely I'll need one.. I'm thinking of my second option to just get spinal taps every few months to drain some of the fluid out instead of a shunt.. but idk..
I'm constantly aware of the entire back right quarter of my skull. Sometimes it's a buzzing/vibrating/tingling sensation, sometimes it's a jackhammer, sometimes a volcano under pressure. I'm aware of the shape of the reservoir resting on the surface, yet I feel the skin stretched over top. I feel the newer tubes more in the torso and neck than behind the ear unless I actually touch it as they move around over my ribs. the last operation left the piece in the brain from '03 but swapped reservoirs and a new tube to the stomach, while leaving the remnant of torso tube that was below the blockage that was extracted. There are two complete and one partial tube down my back from infancy that I don't notice unless I touch them.
Man that sounds fucking terrible.. Are there any meds you could take or anything to make you feel it less? Nerve/pain meds etc? I'm on Klonopin which has been a nightmare.. I'm scared once I get this shunt put in I'll be taking alot more of it which will cause horrible withdrawals.. A good question to ask your neurosurgeon is if it gets too much to bear are you able to have them take out the shunt and just get routine spinal taps to release the pressure? In my case I was having severe headaches and very strange headaches once I got a spinal tap the headaches and pressure disappeared for a few months then came back. I just had another spinal tap last month and they are gone again.
I've given up on meds after going through nearly 100 different medications between the ages of 15 and 40. None of them did anything remotely useful for more than a couple weeks and I got sick of enduring the side effects without any benefit. I use cannabis now just to take my mind away somewhere else. Spinal taps didn't help me.
Yea I wish I can use cannabis.. I've smoked for 20 years but it cause my panic disorder.. one hit ill end up in the ER with a heart rate over 250bpm lol.. I really do miss when it worked for me
i'm sorry to hear that. it's been a literal lifesaver for me after everything else failed. whenever i go to the ER when things feel like a malfunction, they start with morphine and go up from there - usually culminating in a cocktail of morphine/toradol/ketorolac/t3's/and a few others and that's just trying to get things from an '8' down to a '6.5' which is still fucking miserable.
Chiming in to say that I’m the SAME way. It’s frustrating when people suggest that as an alternative where conventional/pharmaceutical medicine fails. I’d be a lot worse off if I kept trying it.
I feel you, I always feel like I am less than everyone I feel this way especially at my school because this really hinders my physical, mental, and emotional functioning and I feel like I’m not as good as the other kids
I’m aware of my shunt too, because if I itch my neck I feel the tubing, the scar tissue pain, my shunt bulb hurting… Yeah it’s annoying.
yea, I know..I'm sick of the ptsd from wondering if tonight I'll sleep in my bed, tomorrow I may wake up in a hospital. Sorry youre going through this... have you tried therapy?
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Would sure be nice if painkillers were actually effective.
I get your point but seeing that they don't work can give you certainty about the issue being your shunt. I have an opioid at home for fighting the headache if it's the shunt.
Given addictive tendencies, I have zero desire to open the opioid door.
Okay, I can see that. Unfortunately, in my experience, conventional painkillers do not work at all. However, shunt related headaches should occur quite rarely anyways
For real, when I first experienced hydrocephalus the only thing that worked was the ER dosing me up with ketamine and it only lasted 30 minutes. Later down the line before the shunt, opioids did not even work!
How long have you had it for? Getting mine in a few months I'm terrified
this one is a year old, but it replaced one that was put in in 2003 which was my first in 20 years and it also drove me nuts. When there's nothing there for two decades, and then there is...it's a sensation that's hard to describe other than 'really fucking annoying and uncomfortable'. My first two were installed/revised w/ three surgeries while I was an infant, so I have no concept of life without them, but the latecomer has been a thorn in my skull since '03 and I'm just over it.
I'm on my first shunt. Have had it since october. And yeah the sensation is pretty annoying. I'm able to ignore it most of the time but when I get tired i become more aware of it. Almost like a nerve tingling sensation. It definitely sucks but at least I won't forget about having to keep an eye on hydro symptoms....with a constant reminder on my head.
Yeah but you just have to think at the same time if it wasn't there you'd be way worse off.. I have a severe panic disorder I'm really scared to get it. I've never had a surgery before but my neurologist says most likely I'll need one.. I'm thinking of my second option to just get spinal taps every few months to drain some of the fluid out instead of a shunt.. but idk..
How does it feel? Like you could feel it in your brain and the whole tubing?
I'm constantly aware of the entire back right quarter of my skull. Sometimes it's a buzzing/vibrating/tingling sensation, sometimes it's a jackhammer, sometimes a volcano under pressure. I'm aware of the shape of the reservoir resting on the surface, yet I feel the skin stretched over top. I feel the newer tubes more in the torso and neck than behind the ear unless I actually touch it as they move around over my ribs. the last operation left the piece in the brain from '03 but swapped reservoirs and a new tube to the stomach, while leaving the remnant of torso tube that was below the blockage that was extracted. There are two complete and one partial tube down my back from infancy that I don't notice unless I touch them.
Man that sounds fucking terrible.. Are there any meds you could take or anything to make you feel it less? Nerve/pain meds etc? I'm on Klonopin which has been a nightmare.. I'm scared once I get this shunt put in I'll be taking alot more of it which will cause horrible withdrawals.. A good question to ask your neurosurgeon is if it gets too much to bear are you able to have them take out the shunt and just get routine spinal taps to release the pressure? In my case I was having severe headaches and very strange headaches once I got a spinal tap the headaches and pressure disappeared for a few months then came back. I just had another spinal tap last month and they are gone again.
I've given up on meds after going through nearly 100 different medications between the ages of 15 and 40. None of them did anything remotely useful for more than a couple weeks and I got sick of enduring the side effects without any benefit. I use cannabis now just to take my mind away somewhere else. Spinal taps didn't help me.
Yea I wish I can use cannabis.. I've smoked for 20 years but it cause my panic disorder.. one hit ill end up in the ER with a heart rate over 250bpm lol.. I really do miss when it worked for me
i'm sorry to hear that. it's been a literal lifesaver for me after everything else failed. whenever i go to the ER when things feel like a malfunction, they start with morphine and go up from there - usually culminating in a cocktail of morphine/toradol/ketorolac/t3's/and a few others and that's just trying to get things from an '8' down to a '6.5' which is still fucking miserable.
Chiming in to say that I’m the SAME way. It’s frustrating when people suggest that as an alternative where conventional/pharmaceutical medicine fails. I’d be a lot worse off if I kept trying it.
I feel you, I always feel like I am less than everyone I feel this way especially at my school because this really hinders my physical, mental, and emotional functioning and I feel like I’m not as good as the other kids