Yikes, I have only had on LP (without anesthesia) and it was horrible. I am still trying to get over the trauma of that. I know that next time I will insist on sedation or I wont do it! I was just diagnosed with PTC in Feb and I have been avoiding LPs like the plague. I know my pressure is high because I still have bad HA s. I too have the horrible jaw pain and find it difficult to eat most of the time.
Can you wait to have the LP done when your husband isnt going out of town? Or is there a good reason the LP has to be done now, like concern of shunt failure or permanent vision damage?
My NO told me that PTC and trigger migraines at random with no cause, but that you can also continue to have the PTC pressure HA s as well.
I dont know if this really helps but at least know you are not alone!
Good luck!

Hi Khrystine, I cant get on line for some reason hence the reason for my answer here.
You know how I fear lps and the potential damage they can do. My neuro has refused to do anymore on me( thank God!) she feels it is just counting numbers.It doesnt matter how high it may be, its high, thats enought to worry about. Also, I get no relief from them. You dont get much time either do you?

The really bad news here seems to be , you are having migraines and IIH headaches simultaneously. What hell! There is a difference between the two but as you are in so much pain , you cant seperate them.Your drs should be doing the work for you.

The pain in your jaw and neck are all related to IH not migraine,tho, who can say for sure? Since I came off the Diamox, I am experiencing, for the first time , the neck and jaw pain. Ugg.

Why cant your drs, put their heads together and find a plan that sorts out the two problems? I am still takng meds for migraine, when I need them (now, about once a month). I am lucky I guess, that I get an aura, to warn me first. Do you get a warning Khry? If so, take the meds for migraine right away, dont wait to see what it will become. I believe you have to stop pain before it takes hold and then owns you.

Try to stand back , look at where you are, breathe deep,and take what ever you need to get you out of the pain.(Within reason of course!) Once you are stable, pain wise, you will be so much more able to deal with all this .

My heart goes out to you.I was like this at the beginning of the year,non stop pain.It clouds your judgement, weakens you, and makes you lose faith in yourself. Be strong Khry, it will get better. And you know we are all her for you, giving you love and support. Cath.

mm3

I don't have any answers really, but I want you to know I am thinking of you. I can share that I have neck pain, jaw tightness, shoulder pain, weird things happening to my body and an overwhelming feeling of something just not being right as my main symptoms. My neck/shoulder pain is a lot more severe than my headaches, or head tightness.

If it weren't for the fact that you are going to be alone to take care of your children- I would say try and wait it out. (taking the excedrin) I think this up and down roller coaster is looking more and more common with all of us that have this illness, shunt or not. I can't even imagine how frustrating that must be after getting a shunt.


Back to my first line, I don't have any answers. As you can see I don't. I can say that is what I would do but I am not you and the severity of your headaches are much different than mine. I do think this roller coaster is common but I can't say what I would do if I was experiencing the pain you are experiencing. The truth is, the thought of taking Dilaudid for pain is scary to me. The thought of taking a med that strong and it not helping tells me you're in a lot of pain.

My heart goes out to you. I know you will figure this out. Think back to all your lp's and how you felt afterwards. Will that help you get through this time alone with your children? Is it worth the risk involved from having an lp?

I am sorry I don't have much to offer.
I hope you wake up today HA free.

My thoughts and prayers go out to u!!!!! But now again I still don't understand y there's the constant need of Los while u have a shunt this still baffles me??!!!???!!! Please any docs or research teams, find out about about iih and a good treatment please!!!!!!!

MM#, It does sound like you are having migranes and IIH HA. Is there nayone besides your husband who can help with the kids. What about the lp being done under flouscopy( spelling?)you know guided by xray..my concern is if you get a low pressure HA how will you get up to cre for your kids ?..talk it over with your husband...I also grt the jaw, shoulder, and neck pain...thinking of you....paula

MM3, I am so sorry. I would ask your NO or NS if they can try you on the caffine tabs. I went through 8 LP's and I really do not want anymore as it is a great risk each time. You also have a risk of low pressure ha after the LP. I was skeptical at first but, was ready to try anything. I am also on Neurontin which is helping me sleep a little at night. I have severe tightness and pain in my head and neck since this all started. I also cannot look up for any period of time because I get dizzy and feel sick immediately. When I look up I also have such pain where it feels as if a bubble will pop in my head.

This question is for everybody: I have been montering my condition and have noticed that I have more headaches and pressure right before the monthly cycle. Anyone else experience that? No, I'm not going through menopause I've been tested for the hormones.

Update:

I went for the LP. I went for several reasons...Mostly, because I am desperate for relief and desperate for ANSWERS. Unfortunately, I don't feel like there is any legitimacy to what I am trying to tell my doctors (i.e. still feeling poorly even with shunt), so my pressure readings are my only proof that there is truly a problem. I could try and wait until next week when my husband is home, but we have family coming next week and it would also be a bad time to be down. Only difference is that next week, I also have to be on the move. Either way I'm screwed. Thank you all for your support. It means more to me than you can possibly imagine. I just wish I had more of that support here in Rochester. My mother is begging me to move home to Ohio. If only it were that easy.

Now...here's the scoop and the disappointment. I went to this very nice clinic where they do approx. 1400 of these flouroscopic LP's each year. They were very nice and professional, but, I knew early that there may be a problem when the doctor...er....I mean, Physicians Assistant came in to tell me what she was going to do. I have nothing against PA's personally. However, professionally speaking, I've been under the care of more than I can count and I haven't met one who has been up to par in their medical knowledge and ability. This PA told me that once they got me lined up and got the numbing medicine in they would insert the needle and turn me on my left side to get the pressure reading. I said, "Will you be putting me in a fetal position to get the reading?" She said, "No...you'll just lay loosely on your left side with your knees "slightly" bent." I said, "With all due respect, I'm concerned about this. The other 13 times I've had this done I've laid curled in a fetal position in order to get the reading. Different positions can affect the reading and I'm concerned that by not lying in the same position as I have previously my readings will be off." She said, "As long as your head is level with your hips nothing else matters." I knew she was wrong, but, there was no point in arguing. (Plus she was going to put a needle in my spine...didn't want to piss her off.)

So, they took me in and prepped me. Lying flat on my stomach the PA gave me the local anesthetic. Then she said, "I'm going to put this needle in now. As I go in you will feel a shock go down one or both of your legs. It's uncomfortable, but it is normal. Everyone gets this shock. It lets us know that the needle is in." Now, I know, from experience that a good doctor can do the tap without causing that "shock". But....I braced myself. The needle went in, and BAM! I felt an EXPLOSION of shock go down my left leg. With all the LP's I've had....I've never felt anything like that! I mean I've felt that shock before, but this truly was an explosion of pain. I screamed. I jumped. And, I sobbed like a baby. (I probably would've hit her, but she was pregnant.) She was like....Are you ok? Ummmmm.....NO! Then she had me turn on my left side with my legs practically straight...only slightly bent. And guess what???!!!!! My opening pressure was ONLY 13!!!! LOL! I said, "Told you. This is not an accurate reading. I need to be in a fetal position." She said, "Ok....we'll try that." So, a good 10 minutes after the initial tap and reading she had me get in a fetal position. After I was in position she said, "Oh yeah....Look at that....your pressures are rising." Really???? No way???? LOL! My pressure reading was now at 19. Still within normal limits. But, because she had spent so much time playing around initially, I've no doubt that I never got an accurate reading. I believe that had she done the test accurately from the get go my readings would have most likely been around 24 - 26.

At this point, I just wanted the test over. She said that she was going to take some pressure off. Which I thought was odd, because according to what she was reporting, my pressures were normal. So, I said as much. But, she insisted. As it turns out....She took off 15 cc's of fluid and my closing pressure was ONLY 4!!!!!!! Seriously....4!!!!!

Given that....I should be very sick right now. I don't feel well, but so far I don't have a low pressure HA. This of course, may prove what I believe which is that my pressures were much higher than she could even guess. Therefore, the 15 cc's she removed is actually providing relief. Only time will tell. Now, I'm supposed to rest.

But....

I got home. And, my Golden Retriever decided that today would be a good day to take a crap in my dining room! It took me 2 hours of getting up and down, bending over and scrubbing to clean up the mess. Then of course, there was laundry to get done and dinner to make. Needless to say, I'm not feeling so awesome right now. But, I'm hanging tough.

So...that's it in a nutshell. Hoping for a better tomorrow.

MM3

I'm so sorry Khrystine about your tap, that sounds awful and she sounds stupid! My 2nd tap I had that horrible shocking feeling going down my back, felt it big time in my butt, and my legs. I too cried like a big baby and I was yelling for them to take out the needle, typically I think the needle should be in 5-15min, and this was in for about 25. Actually if it wasn't for that tap I might've continued to have taps for a while vs jumping into surgery so soon cuz my 1st and 3rd tap wasn't that bad at all. Oh but what I was getting to is the radiologist said that he didn't hit a nerve but he brushed up against one and that's the reason why that happened. Anyways I hope you get to feeling better!

Hi Khrys,

Sorry to hear you had to go thru this once again. I hope someday you can find a real NS that can tap your shunt.

I would like to inject a little more info to muddy the waters. You may recall that my NS is not a fan of LPs to determine ICP as many things can influence the reading. Well, when my neuro did LPs on me he had me in the fetal postion curled up as tight as possible so he could feel my spine and find the right place to puncture. Once the needle was in he always had me relax and straighten out a little while the meter was filling and the pressure reading was coming up. The reason I mention this is that because straining too much to make the fetal position can give false readings that are high. I know this because when I was in the hospital with the ICP monitor in my head I could make the monitor spike to the 50s and 60s by straining, or changing postiions to extremes. My NS claims that stress and many other factors can influence the reading as well.

I only had one LP under flouroscopy and that one did not require me to be in the fetal postion as they could see where they were going. Unfortunately that LP was only to get fluid to confirm my infection was gone and not to detemine OP.

So what I am saying is it is important that you are relaxed when the reading is taken and that is hard to do during an LP as we all get wigged out during the procedure.

If you read about LP procedures on IHRF,
http://www.ihrfoundation.org/intracranial/hypertension/info/C72/
they also mention the importance of relaxing and not really being in a tight fetal position.

So think about how tight you might have been curled up vs how relaxed you were and then think about the numbers the PA told you before you assumed the fetal position and after.

I am not doubting that your pressure was/is high I am just trying to help you truely understand why you are still having trouble after going thru everything you have been thru.

TJ

TJ:

I absolutely understand what you are saying and I agree with you. Whey I say that the doctor just wanted me on my left side with my knees "loosely" bent...I mean, I was practically straight on my left side. There was no "fetal position" to it...in fact there was no position at all. I was on my left side and that is all. The other 13 times I've had my LP's I've laid in a true fetal position. Not curled up tight in a ball where I'm pulling my knees so tight that it requires muscle power and tension. Just a true, comfortable fetal position.

My point is that given the fact that all my other LP's were done in this position...and because I NEED a comparable reading...and because I absolutely agree with you about a change in position causing a change in readings....it was important that I be in a true fetal position. Does that make sense?

As for now, I am waiting for the other shoe to drop. IF I had normal pressures and she had taken off 15 cc's of fluid taking me down to a closing pressure of 4, then you know I would be very sick. Funny thing is that I never got sick with a LP headache. Proof I guess that my pressures were indeed high. Especially after the last couple of days I've had. This morning I had to take my daughter to the doctors and both of my girls ended up home sick. So, instead of lying down, I ended up cooking and cleaning for them. I've lifted trash up to 50 pounds or more, carried laundry, bent over a billion times, and been on my feet for hours at a time. Plus, I've discovered that they never bandaged up my back when they were done. Typically the doctors at least put a band aid on and tell me to keep it there for the first 24 hours. This time they didn't put anything on it. So, like I said, I'm still waiting for the other shoe to drop. Wonder how long it will take.

MM3

Hi MM3,
Sorry you had such a rough time with the LP. MY last LP I had at UCLA I was actully on my stomach and after they numbed me the table was tiltied to a forty five degree angle with my feet at the bottom and then the needle inserted. Like TJ said they kept telling me the most important thing is not to tense up or bear down. My opening pressure was 24. THe first two I had in the fetal postion were 31 and 28. SO I gues this is jsut more of what we all go thru...every hospital and every clinid and every DR. has a different protocal..my NS wont even do a hsunt without the ICP monitoring that I had first. I just read about someone that got a shunt without ever having and LP...
what I am concerned about is the fact that you are doing way to much today....you need to slow down...you have to find a way to let somethings wait..instead of cooking can't you order take out make a peanut butter and jelly sandwhich...you have to take care of yourself first or you can not take care of your family....please stop and lay down...you are going to hurt yourself....I am worried about you...please stop and lay sown...Paula

See this I don't understand. Or I understand it differently than most here. I think.

We produce, well a normal csf producing person produces about 500ml, or cc's of csf fluid a day (not all at once of course, we produce csf every minute). We can only hold, I think, it is between 135 and 150 ml or cc's at a time, so the rest is being drained in large amounts rapidly. when you think of how much a person with normal pressure produces, 15 cc's is not a lot to remove. I don't think the cc's have anything to do with the pressure in the sense that they removed 15 cc's so you were closed at a pressure of 4 . The pressure lets the doc know we have too much csf due to the extra amount of pressure on the spine. It doesn't tell them how many cc's we have on our brain. (28 cc's or even 60 cc's would be extremely low, a 28 pressure on the other hand is high) Which is why I think so many doctors don't agree with lp's other than getting a diagnoses or if a persons pressure is extremely high. That and it is easily influenced, even by tension.

Either way lp's are a difficult process and I hope you have recovered. I hope most of all you've found relief.

I have had the shock down my legs and it's no fun. I have nightmares that at anytime a doctor is going to suggest I have another lp. I am serious. I have lost sleep over lp's, especially before doctors appointments.

Regardless of what the readings were in actuality the other shoe has officially dropped, as I have a nasty headache now. So whether my brain is being squeezed, or whether it's not surrounded by enough fluid...I am currently ill. Quite honestly, I'm tired of over analyzing these tests. Bottom line is that even with the shunt....I am still sick....and my life is severely disrupted. So now what?

I wasn't trying to over analyze. I think it's important to understand what is happening to our bodies from the medical stand point. That's all! Maybe she was confused about how much she took off or you got a leak, which is most likely what happened.
I wasn't saying your pressure wasn't high. I have no doubt your pressure was/is high. We've had this illness long enough to know without an accurate or inaccurate lp reading. Those are more less for a doctors use and hopefully we get relief from them when we have to have them.

I am sorry you have a headache. I am sorry your life is disrupted.
I am sorry everyone here is sick and that our lives have been disrupted. I want nothing more than to know how to cure this illness or even to relieve the symptoms.
More than anything I hate seeing someone with a shunt still suffering.

Betty:

Just to be clear I said, I'M (as in me personally) tired of over analyzing these tests...I wasn't saying that you were over analyzing. When I wrote this, I was referring to the fact that I am tired of trying to figure out what is causing my IIH. I'm tired of trying to find a doctor. And, I'm tired of trying to figure out what all the numbers mean. At the end of the day, the only thing that is clear is that the methods used to diagnose IIH and the treatments used to treat IIH are absolutely insufficient.

This is why I wanted to drop off the site a few weeks ago...because apparently when I write, something gets lost in the translation and somehow I offend people. I'm sorry that I offended you. I know you do a lot of research on the ins and outs of IIH, so we've come to expect a good deal of valuable information from your posts. I appreciate that. But, now your the second or third person (maybe there's more who haven't spoken up) that I have clearly upset. And, now this is the second or third time that I am left in awe trying to figure out how. Oddly enough...the anxiety and stress from "walking on eggshells" within this site is far outweighing the therapeutic value it once had for me.

MM3