u/Emmilekk

Hi. I have a non-connected vp (that still sort of drains but ive been told its not in my stomach) and a LP shunt that I rely on to keep me going. And it has for 8 years. Recently I have been dealing with dizziness, headaches and vision changes. I went to hosptial for a week and they did a icp bolt and told me it was low pressure, fair enough. But they have also told me that my lp isnt broken, that all scans are saying that my shunt looks perfect. Fair enough. Well I have been sent home with the symtoms and im basicly bedbound. I have got a pain in my shunt now, that comes and goes the right side of my back right next to my shunt. I sometimes feel really low pressure, where lying down helps, but then I sometimes feel on the higher end of pressure when my ears throb and head hurts even with lying down. They wont listen to my concerns, I just want a new LP fitted and I know that will fix me. I have been told my 1st step is an eye test and then they want to just change a valve on my shunt and see if that works. I just want to hear from my fellow IIH warriors- what did you shunt malfunctioning feel like? How do you get neurologists to listen to you when you know what your body is screaming but all tests are not showing what you feel? Urgh. X

So, I have got two shunts my VP dosent work, my LP shunt works well (so they say) I have had the shunts for around 8 years (i got all that due to losing 6 stone and my old unjustable shunt overdraining leading to very low pressure headaches), in them 8 years I have been 14 stone plus 18 stone with no issues. When I have been on the lower end of weight I have had low pressure headaches but never for long as I have allways yo-yo'd back to a higher weight. After the birth of my daughter and then the death of my brother my weight skyrocketed back to 18 stone, where I really dont feel comfortable due to the fact my hips hurt and my mobility is affected so I decided to try monjaro, that was very successful for me and I ended up losing 3.5 stone. Just before the Easter holidays I noticed dizziness, headaches and slight visual changes, this worried me so I decided to stop the MJ and have a break, and gained back to 15 stone. My dizziness has stayed, I am getting quite bad lower head pain to the point of going to a&e. They put the icp bolt in that said I was low pressure and done multiple scans on my shunts. Then my shunt nurse adjusted my LP shunt, to drain less. I couldn't handle the high pressure, couldnt stop vomiting and asked them to turn it back. My shunt nurse dosent feel safe turning it back again to try again. I have spoken to another nuro today who said in an ideal world he would put a VP shunt in with a high tec adjustable valve and a pressure monitor in. Only issue is the last time they tried to put a VP shunt in it ended in multiple surgery's, my ventricles in the back on the brain are small, and I have very small pockets or fluid in my brain so it will be exstreamly difficult and high risk to try again. He said he can put another valve on my LP shunt that can help with overdrainage but that may not work to help my symptoms either. My question is... do I just gain weight? I never had any issues when I was bigger. Every time I lose weight my shunt over drains and causes issues. If I was a ideal candidate for this high tec vp- fair enough but I have 3 kids and a partner and I dont really want to risk my life and/or quality of life. Urgh. If I gain weight and reverse this low pressure I am hoping it solves the dizziness and head pain but then theres the question of what if it dosent? I hope this all makes sence- has anyone else had a similar exsprerence with losing weight with a shunt? And do you think reversing my weight loss will help my symtoms? I think in theroy it should... but idk.

So I came to hospital with head pain, dizziness and hearing changes. I had a ICP bolt in and pressures were low, not massively low, but low. They decided to adjust my shunt to drain less and I totally panicked, vomited, cried and hyperventilated. They turned it back to the original setting and now im back to square one. I am asking to try again, mri turned out normal, no signs of high or low but I do believe i am low. My questions are is it normal to be out of wack for a couple days after shunt adjustment, should it sort of even out eventually. I think I did everything wrong I wasn't resting and I was just in full blown panic and of i try again I might start feeling relief after a few days. Please help me, I cant live like this !! What was your exsperience of shunt a shunt ajustment.