bad day,bad month, bad year

Hello everyone my name is Donna, I am 26 years old and have been diagnosed with iih since 2010. I am a full time mum to a 7 year old boy, 5 year old boy/girl twins and a 4 month baby girl. I have an lp shunt which in my opinion has only made things slightly better, suppose its better than nothing though. After my shunt was inserted my body started rejecting it causing my kydneys to begin to fail and the low pressure headaches were unbearable, couldnt open my eyes, sit up and was violently sick. Had to be put in a dark hospital room and apply freezin cold water to my eyes. Luckily my body did take to the shunt but i was so week i needed physio. After a few months though things settled down but i feel i am back to the start, headaches every single day, tired and feeling sick. I cant walk far or stand any length of time, i feel like an old lady trapped in a young girls body. I have been to my doctors about pain relief but am getting no where as no one seems to understand this disease. Is my life always going to be this constant pain? im tired. People think im lazy because i struggle to get out of bed every single morning. I still function however, it is me who cooks, cleans and looks after all the children. At the moment I have no pain relief other that ibubrofen which does absolutely nothing as my doctor reccons its just a normal headache. I often want to bang my head on the wall as it would be a different pain.

feels likle ive just moaned the whole time on here, im turning into a grump, dont like the new unimproved me.

xxx

Hi Donna and welcome to the group. I totally understand how you feel. It is very disheartening when you think that as soon as you have your shunt, everything will return to normal. LP shunts are known to be problematic in the fact that they can overdrain which then leads to constant low pressure headaches.

Rather then seeing your GP I would contact your Neurosurgeon and ask for an appointment. That way when you see him you can go through all these issues with him, and he may then want to do some tests. He could also prescribe you some more effective pain relief. The reason why seeing your Neurosurgeon is better, is so that he can assess whether the shunt has become blocked or loose, or is overdraining and then sort it out, whereas your average GP is not specialised, and therefore cann't effectively treat you in regards to these issues.

I'm sure once you've seen your Neurosurgeon and had a good chat with him about what is going on, and the problems and pain your are having, you will get a lot further as he will investigate and treat accordingly.

You can do any of the following; contact the ward you were on when you had your shunt fitted or ring your Neurosurgeons secretary and ask to see to him and explain why. IF you don't get any joy and get an appointment, ring your hospitals PALS and they will act on your behalf.

Once things get sorted and your shunt is doing what it is supposed to, you can build back up to having a more productive life. It wont always be like this, and your pain will eventually be under control. It's frustrating I know to have gone through the surgery and there be no benefit from it, but I'm sure seeing your Neurosurgeon will make all the difference.

As for moaning, you aren't you're just stating facts about how it is for you, and that is why we are here. to listen, support and help. Don't apologise for how you feel or for what you're going through. We all understand and sympathise here, because we go through this too.

Heidi



Keep us updated on how you get on.

Welcome to the group! I'm sorry you're still sruggling with so much pain. I think Heidi's right..you need a follow up with your neurosurgeon. It really doesn't sound like your shunt is working properly & you may need an adjustment. I have a LP shunt & recently had surgery because my shunt was overdraining. I was exhausted, could barely get out of bed, & felt absolutely horrible when I did. The only relief I got was when I was laying down, so I completely understand. It's amazing how much better you can feel..after 4 weeks I went back to work & I'm still headache free. I know it's possible for you, so don't give up hope! Just keep asking questions & talking to doctors until someone listens..it may take time, but you'll get there!

Take care, Julie

Hello Donna and

It sure sounds like you have been a quite a merrygoround for a while now, and time to get off. I agree with Heidi and Julie. Back to the Neurosurgeon armed with all of your current symptoms listed as well as questions prepared so you can maybe get a plan of action going. My lp shunt was installed Nov 1st and has been been working well. I have a programmable valve, which we adjusted after 3 months, and now it seems to be draining at a really good rate. If you stick with the lp you may want to see if you can get a programmable valve installed.

Wishing you better days ahead.

Thank you all for your responses. Doctor has re referred me to neuro and given me methocarbomol which do work a bit. My shunt wasnt fitted with a valve as apparantly it needs to drain all the time. Will see what the neurologist says when the appointment comes through, This time I will at least have an idea what hes talking about, found this page very useful. Feels good to know its not just me.

xxx

we all have up and downs i have tried to video mine so others feel me with them xx


https://www.youtube.com/user/VDubsTDi/videos

Hi Donna! I'm a little late welcoming you to our group, but wanted to say hello and add my welcome. So glad to hear you have found this site helpful so far. It's been a great resource and place for support for me too. *hugs* I look forward to getting to know you. Keep us posted on your progress.