I truly hate to whine about this, it really makes me uncomfortable. But I am just having a string of pretty bad days, increased pain and extreme exhaustion. I'm sitting here, it's 10 pm. I've taken pain meds all day, I have rested, kept the stress, the noise, the lighting, the activity all low. And my head hurts, God how it hurts. I want to scream, to cry, but those make it hurt more. How can I keep living like this? Every minute I feel I can't take one more minute of this. It just goes on and on and on. I always know that if the pain level goes down at some point, this will happen again. There will infinite instances of it happening again. I am so tired of this. No matter how I try to pretend it doesn't, this illness rules my life. The pain, past pain, future pain, current pain, rules my life. Please just let it stop.

Sorry. And thanks

Hi Deb. Don't feel the need for permission or to apologize for having the need to rant and rave. We here on the forum understand all too well the frustrations, the pain, the isolation that this disease can bring. It is not a nice disease at all! You feel free to let your hair down and tell us what is going on, anytime!
I was just wondering, especially since you have had high lp readings, have the doctors suggested any surgical options for you? Being on SSD you should have your Medicare, I would assume (I have mine). I had a lp shunt installed Nov 1st and FINALLY. no more daily headaches!! Is this something you may want to explore?

Thanks Wylee,

I have twice had consultations with neurosurgeons regarding the possibility of a shunt. Both times I was told I was not a good candidate due to the size of my ventricles and they not being able to support the shunt. Also, with the many people I've talked with off and on over the years, it seems that shunts can bring their own horror stories. So while part of me has been disappointed over being told no on the shunt front, part of me is not so unhappy.

Also LP's have decreased in effectiveness over the years. The last was in October 2010 and only gave a couple days of limited relief. That had been the case the last several before that.

I keep running into brick walls this illness throws up on me, no matter what direction I turn in.

I may be wrong, but I thought that if the ventricles were too small for a vp shunt that would not preclude one from getting a lp shunt. Yes, there are many horror stories, but a whole bunch are from procedures done outside of the U.S.. I too was so worried about getting my lp shunt until I got it. No big deal at all, and has worked well since install too. OK, it's only been in since Nov 1st, but I am confident that I had a great team. It is so much better than daily headaches.
As to the lp's for relief, it only takes 82 minutes to bring the CSF pressure back up, so short term relief is all that is expected. But that is the clue. If you get ANY relief from having your pressure adjusted, than that might be something to consider. There is also optic nerve surgeries and sinus things. I just hate to hear of someone going through that God awful pain.

Unfortunately, the only people I have spoken to with shunts were here in the states. Back in 2008 and 2009 I belonged to a support group in New England (where I lived at the time) which got together once a month. There were also people who traveled from outside of New England because it was great to meet and talk to each other in person.

I have not had a neurologist that supported an LP shunt up to this point. I have to agree with them on this. In the early years of my IH journey, I would get relief from an LP for at least a couple of weeks. I have been one of the lucky ones in that I've never had problems with my optic nerves. For which I am extremely grateful.

you sound like you need a

I cannot have a VP shunt as my ventricles are too small so I have had a LP shunt - it change my life - (I am on my 3rd one)

try to keep your chin up we know what you are going through xxx keep pushing for it remember your are the one in pain not them xxxxx

I agree. Look into trying for a lumbar drain test. If that shows that you CAN get relief from having your pressure lowered, do see about the lp shunt. Seems better than having constant head pain.

You may need to find a different doctor if your doc won't do anything at all. You need someone who is willing to go the extra mile for you. Keep trying until you feel better.

I appreciate all the help everyone has offered. Due to moving around the country a bit over the last several years, I have had five neurologists since being diagnosed in 2006. I have had over two dozen lumbar punctures to drain my csf to try and get some relief. My pain may be constant, but the level of pain does fluctuate. I have learned to live with it being up to a certain level. Draining the fluid has occasionally lead to a lessening in the pain level but the pain never goes away. Each of my neurologists has tried something different to see if the levels could be brought down or even hopefully eliminated. I've gotten disheartened at getting my hopes up every time and no improvements made. At this point it is what it is and most of the time I'm good with it. I've learned to live my life accepting the fact (as best I can) that this just may be how it is here on out.

There are just times I do get down about it.

Deb it is perfectly understandable you feel the way you do, IIH is a hard disease to live with, and it is made harder by the lack of awareness and understanding that surrounds us. I am so sorry that you are in daily pain. Combined pain relief has proven very effective, and many of our members are on combo medications for pain. Maybe this is something you could explore with your doctor, as it might be something that works for you.

You aren't alone and we are always here for you, whether it is for advice, answer your questions or just to hear you vent. You will always have your IIH voice here, and we will always listen.

Heidi