Unfortunately, what you are complaining about is the battle I fought for over a year until I gave up and got a shunt. The lp's I would get would relieve my symptoms for about 12 hours and then I was right back to square one. The reason why is because after 12 hours your body replenishes its supply of csf so an lp doesn't last long. I gave in and got a shunt. It is not something to take lightly bc it is surgery and frought with its own complications. However, since getting my shunt 2 weeks ago I am happy to report the old symptoms I had are gone. Now I have new pains from the shunt, lol. I guess you choose your battle. Right now I have no regrets. I can't go back, only forward. Hang in there hon. HUGS to you!!

Unfortunately, what you are complaining about is the battle I fought for over a year until I gave up and got a shunt. The lp's I would get would relieve my symptoms for about 12 hours and then I was right back to square one. The reason why is because after 12 hours your body replenishes its supply of csf so an lp doesn't last long. I gave in and got a shunt. It is not something to take lightly bc it is surgery and frought with its own complications. However, since getting my shunt 2 weeks ago I am happy to report the old symptoms I had are gone. Now I have new pains from the shunt, lol. I guess you choose your battle. Right now I have no regrets. I can't go back, only forward. Hang in there hon. HUGS to you!!

Unfortunately, what you are complaining about is the battle I fought for over a year until I gave up and got a shunt. The lp's I would get would relieve my symptoms for about 12 hours and then I was right back to square one. The reason why is because after 12 hours your body replenishes its supply of csf so an lp doesn't last long. I gave in and got a shunt. It is not something to take lightly bc it is surgery and frought with its own complications. However, since getting my shunt 2 weeks ago I am happy to report the old symptoms I had are gone. Now I have new pains from the shunt, lol. I guess you choose your battle. Right now I have no regrets. I can't go back, only forward. Hang in there hon. HUGS to you!!

GOOD GRIEF!! I didn't mean to post that many times, lol.. Looks like I'm trying to shove my advice down your throat. I am so sorry. That was an accident and I cannot erase any of it. GIGGLE----my ICP fog isn't gone and probably won't be gone for the rest of my life so I am in trouble. You'll have to forgive this crazy sister tonight!

GOOD GRIEF!! I didn't mean to post that many times, lol.. Looks like I'm trying to shove my advice down your throat. I am so sorry. That was an accident and I cannot erase any of it. GIGGLE----my ICP fog isn't gone and probably won't be gone for the rest of my life so I am in trouble. You'll have to forgive this crazy sister tonight!

GOOD GRIEF!! I didn't mean to post that many times, lol.. Looks like I'm trying to shove my advice down your throat. I am so sorry. That was an accident and I cannot erase any of it. GIGGLE----my ICP fog isn't gone and probably won't be gone for the rest of my life so I am in trouble. You'll have to forgive this crazy sister tonight!

GOOD GRIEF!! I didn't mean to post that many times, lol.. Looks like I'm trying to shove my advice down your throat. I am so sorry. That was an accident and I cannot erase any of it. GIGGLE----my ICP fog isn't gone and probably won't be gone for the rest of my life so I am in trouble. You'll have to forgive this crazy sister tonight!

GOOD GRIEF!! I didn't mean to post that many times, lol.. Looks like I'm trying to shove my advice down your throat. I am so sorry. That was an accident and I cannot erase any of it. GIGGLE----my ICP fog isn't gone and probably won't be gone for the rest of my life so I am in trouble. You'll have to forgive this crazy sister tonight!

@beautiful, it's not you. The DS servers are hanging on post tonight. The only way to stop it from dupe posting is to manually back your browser off the page or reload it. Otherwise, it will keep sending your message every minute until it is done "thinking" about posting.

@Kristena, you are NOT a wimp for wanting relief and wondering what to expect. If anything, that sounds like a very sane, constructive response to debilitating pain. I was just reading some physician's notes an hour or so ago about LPs and they said the relief tends to last around 80 hours -- much less for some. I know I never really get the total relief some describe from an LP, and have been told that my CSF regen rate is exceptionally high. Serial LPs just aren't the answer to this type of pain, and they come with considerable risks compared to other current treament options.

There seems to be two schools of thought on how intracranial pressure is attacked. Some docs consider potential vision loss and pressure-related symptoms so urgent that they want to do ONSF and/or shunt surgery right away and worry about meds later. Others are more conservative and want to try diet and medicaton first to see if that produces results without surgery. Has your neuro prescribed Diamox and/or Lasix yet? If your doc is attempting to treat you with nothing but serial LPs, you need to seek a second opinion ASAP! NOBODY does that anymore.

@beautiful, it's not you. The DS servers are hanging on post tonight. The only way to stop it from dupe posting is to manually back your browser off the page or reload it. Otherwise, it will keep sending your message every minute until it is done "thinking" about posting.

@Kristena, you are NOT a wimp for wanting relief and wondering what to expect. If anything, that sounds like a very sane, constructive response to debilitating pain. I was just reading some physician's notes an hour or so ago about LPs and they said the relief tends to last around 80 hours -- much less for some. I know I never really get the total relief some describe from an LP, and have been told that my CSF regen rate is exceptionally high. Serial LPs just aren't the answer to this type of pain, and they come with considerable risks compared to other current treament options.

There seems to be two schools of thought on how intracranial pressure is attacked. Some docs consider potential vision loss and pressure-related symptoms so urgent that they want to do ONSF and/or shunt surgery right away and worry about meds later. Others are more conservative and want to try diet and medicaton first to see if that produces results without surgery. Has your neuro prescribed Diamox and/or Lasix yet? If your doc is attempting to treat you with nothing but serial LPs, you need to seek a second opinion ASAP! NOBODY does that anymore.

@beautiful, it's not you. The DS servers are hanging on post tonight. The only way to stop it from dupe posting is to manually back your browser off the page or reload it. Otherwise, it will keep sending your message every minute until it is done "thinking" about posting.

@Kristena, you are NOT a wimp for wanting relief and wondering what to expect. If anything, that sounds like a very sane, constructive response to debilitating pain. I was just reading some physician's notes an hour or so ago about LPs and they said the relief tends to last around 80 hours -- much less for some. I know I never really get the total relief some describe from an LP, and have been told that my CSF regen rate is exceptionally high. Serial LPs just aren't the answer to this type of pain, and they come with considerable risks compared to other current treament options.

There seems to be two schools of thought on how intracranial pressure is attacked. Some docs consider potential vision loss and pressure-related symptoms so urgent that they want to do ONSF and/or shunt surgery right away and worry about meds later. Others are more conservative and want to try diet and medicaton first to see if that produces results without surgery. Has your neuro prescribed Diamox and/or Lasix yet? If your doc is attempting to treat you with nothing but serial LPs, you need to seek a second opinion ASAP! NOBODY does that anymore.

@beautiful, it's not you. The DS servers are hanging on post tonight. The only way to stop it from dupe posting is to manually back your browser off the page or reload it. Otherwise, it will keep sending your message every minute until it is done "thinking" about posting.

@Kristena, you are NOT a wimp for wanting relief and wondering what to expect. If anything, that sounds like a very sane, constructive response to debilitating pain. I was just reading some physician's notes an hour or so ago about LPs and they said the relief tends to last around 80 hours -- much less for some. I know I never really get the total relief some describe from an LP, and have been told that my CSF regen rate is exceptionally high. Serial LPs just aren't the answer to this type of pain, and they come with considerable risks compared to other current treament options.

There seems to be two schools of thought on how intracranial pressure is attacked. Some docs consider potential vision loss and pressure-related symptoms so urgent that they want to do ONSF and/or shunt surgery right away and worry about meds later. Others are more conservative and want to try diet and medicaton first to see if that produces results without surgery. Has your neuro prescribed Diamox and/or Lasix yet? If your doc is attempting to treat you with nothing but serial LPs, you need to seek a second opinion ASAP! NOBODY does that anymore.

If you are taking a good amount of Diamox or Topamax and still having pain that has been causing you not to function for this long, it sounds as if the meds are not working and it's time to talk to the docs about surgery. It's a scary thing, but surgery can give you back a good quality of life. I don't get a lot of benefit from LP's (I've had 3 in one year) but my Diamox / Lasix keeps me functional most of the time (I can work) though the pain is usually there to some degree.

Well, after a very long appointment with the neuro today he has upped my Diamox from 1,000 mg a day to 1,500 mg a day and added topamax and lasix. I'm sure to spend the majority of my time in the coming days in the restroom (lol), but hopefully that will help some. He's looking at some more of my tests I had done at different hospitals and has already thrown the word shunt around a couple of times today. Oh well, I am hopeful for clearer answers soon and thankful for the support from you all

Kristena

Kristena,

You are NOT a wimp. Relief from my LP's last about 1-2 days.

When the meds are either not working or are not tolerated, the doctors start talking shunt. I'm being reminded at each appointment by my neurologist.

Just remember - you have choices. Actually, a fair number of them. You may choose a shunt right off the bat or choose something else to try first. The most important thing is that you go in educated, separately from your doctor's appointment. Do the research!

I prefer to look at all options. I look at them based on risk and level of effectiveness. Here's a list of the options I could find. They are rated on what I judge to be the level of Invasiveness & Effectiveness. I'm pretty sure someone else would rate them totally differently. Effectiveness includes how long the treatment can work or last.

Weight loss: (invasiveness- zero, effectiveness- high)
Octreotide: (invasiveness- medium, effectiveness- high)
Diamox/Topamax/Lasix: (invasiveness- medium, effectiveness- medium/high)
Shunts/VP/LP: (invasiveness- high, effectiveness- low/medium), Depends on the kind
Stents: ?? Depends on the kind

http://www.ihrfoundation.org/intracranial/hypertension/info/C31

Unfortunately I didn't start at the top of the list and work my way down, which is what I'd do if I had it to do over again. Right now I'm in the beginning stages of seriously researching Octreotide. Right now figuring out if I can afford it, and what the lifetime, long-term consequences might be.

I know everyone bristles when weight loss is talked about, and some of the data says that IH causes obesity not the other way around, BUT, those same studies show that a reduction in body mass also reduces IH. So I'm trying like crazy to lose weight.