Hello boatmom.. well that seems weird cause opening pressure of 19 is good. If you think they are low pressure headaches you should have an Mri. Do you have a shunt? If so you should ask for a shunt series? I've been suffering with the low pressure ha's since sept when 3rd Lp shunt put in. Through new doc and mri ,lp and shunt study I've found out that my shunt is broken I have a leak somewhere and my opening pressure was 7. But that can be seen on MRI brain is pulling into spinal column which I was told will subside when leak taken care of... So no matter what keep on keeping on and ask questions.. Good luck

I'm semi-similar! Read my post "In Remission?". I'd type it all again, but i'm lazy!

: )

I kind of wondered if your body got used to having too much pressure if a normal read would wind up feeling like low-pressure. Kind of like how a person who has hypertension can develop symptoms of hypotension with blood pressure of 100/60 while some people's blood pressure runs 100/60 all the time. Does that make sense?

Could he have been comparing your reading of 19 to other LPs you've had in the past?

It seems like every dr has a different standard of what "normal" ought to be....the radiologists who've done my LPs have said 8-10 is normal, whereas an opthalmologist I saw a couple of months ago said "in the 20s" was normal (although he made some other remarks I knew weren't correct so I'm guessing he's incorrect about this also).

I had a low pressure headache once last spring but it didn't last; it was after an LP and it went away after a couple of days but it felt like my brain was scraping against something; to me, it was a different sensation than a high pressure h/a, but hard to describe exactly how.

What is he recommending you do now?

Boatmom,

When my whole journey started I went thru all the tests and then finally after everything came back normal we did my first LP. It was only 21 and therefore did not lead to a IIH DX. Two months later we did another and it was 25 which did lead to a DX and then each one was higher from that point on. The reason I mentioned the 21 is that even though it is not high enough to confirm IIH it was still very painful and miserable. Everyone's body is different so it could be your body causes you pain at 19. I have read normal is 8-18 or 10-20 depending on where you read it, but either way you are at least at the top of normal which could cause you pain.

I was told that depending on what test an optho does that the pressure reading may not be the same scale as that of an LP. I would think an optho would rely more on if there is evidence of swelling of your optic nerve.

TJ

Hi .In answer to ashley, I thought about this and ... if that was the case, how come we feel so good after a lp when they reduce the pressure? I m thinking out loud here. I have been told that my "normal" is in the mid 30s. What in the hell does that mean?
duchessm, I m afraid i dont agree with your drs. 19 is not too high but it is not normal either. I have also read many peoples say that even tho their pressure wasnt that high, they still had hell to pay.
The fact that you are in pain should be enought for them. Do you have paps as well? I do , they are my big problem. Hope you feel better soon. Cath.

THanks so much for all of your responses. I carry the positive diagnosis of PTC because I have had opening pressures (no shunt) of 54 and 43. So 19, while still considered high, is much lower than in the past.
Posted on 01/11/10, 09:01 pm

Above is what Boatmom posted in another thread.

Here's my two cents worth. :)

First off remember you were talking to a radiologist and I don't think anyone who knows alot about PTC would say that 19 is twice the normal amount of pressure. What position were you in for this tap? How many sticks/tries did it take? Are they sure they had a good opening pressure reading? Thinking if you were not in a good position for an opening pressure reading or if the opening pressure was compromised that could explain why you are still having aweful headaches.

Thinking that if everything was in check and your pressure really is at 19 that maybe it could be a low pressure headache???? How long ago were you at 54 and 43? I know that I ran 50+ and since being in remission I have not had a spinal tap so I really have no clue where my pressure is now. But I feel like I still do have higher than normal pressure not to the point of daily headaches or paps (over the years they have improved) but I still have what I call PTC headaches. They are usually caused by low pressure weather fronts, and those same fronts used to cause me the worse pain and if they hung around a day or so, then I would usually have to have a tap to relieve them. Just my personal belief but I do believe that over time our bodies to a degree adjust to higher pressure.

I also know that my Neuro never took me down to 20 as a closing pressure. I really can't for the life of me remember what he would close me at but I clearly remember him telling me that taking me down to 20 would be too much of change and would end up in a low pressure headache. So why that being said if your pressure suddenly dropped from 54 or 43 to 19 then????? Maybe it is a low pressure headache?????

Have you had any other type of surgery between the taps?

Oops forgot to mention, if you want to keep everything in one feed even if it is one that you started just hit the "Add you reply button"

Thinking of you Jennifer!

my Nuro says my pressure is the mesure in the tube plus the amount in the needle but my radiologists just say the mesurment of the tube so when i have a LP under guidance i ask whether it is including the needle mesure this is important as the needles they use on me is 10 cm long giving a 19 in the tube a pressure of 29 this is a dificult thing to be sure of when you get docs that don't talk to there paitents but if this is the case 29 is twice the normal pressure just a thaught

Hi Boatmom: I just want you to know that it is not unusual to have a LP with a low opening pressue, but still have problems. My lowest to date has been 24 which I am told is equivocal, yet I still had some vision problems, headaches, and the constant whooshing in my ears. I was also told that I might have hit a day where my pressures just happend to be down when the LP was done as spinal fluid production does vary from day to day and can be affected by stress, fatigue, etc. My neuro pushes a healthy lifestyle of course and the one thing I have found is Yoga to be an amazing help with symptom prevention and also helps to ease the symptoms somewhat when they flare. Maybe it is the relaxation that helps, I don't know.

Good luck and hang in there.

Dringfli, That is interesting I've never heard of adding the amount in the needle before. Wondering if they use a different instrument than the ones they use here?? The ones I've familiar with have the tube attached to the needle and once the fluid stops rising in the tube then the reading is taken. The tube is removed and fluid is released. It is kinda like taking the air pressure in your tires. It doesn't matter how much air is in them, it is just going to read the actual pressure. Adding 10 can make a huge impact on the results, I mean without 10 spinal pressure could be normal but with 10 high. Sorry for rambling on, just thought it was interesting!!

no i agree it was interesting when i first heard them explaining it ours are a needle that they attach a mesure tube to they can also attach further tubes for higher mesures but i now check what the "actual" mesure is knowing this information

Hi there! Boatmom, I saw this and read through the other responses and had a question about the LP. Were you lying on your side or stomach for this LP? The reason I asked is that my Neurologist and the radiologist that performed one of my LP's said if they have you lay on your stomach, they usually add 10 to the opening pressure number to get the correct pressure. So if you had a 19, it would actually be 29.

If anyone else has something to add to this, please feel free to. Also, I think it just depends on the doctor or radiologist as to what they feel where the pressure level should be.

Liz

does this make any sense...I was having a LP for MS diagnosis...however, my main symptom is constant severe headaches. It took the neuro 4 trys to get the needle in. He said my opening pressure was 18. he took 8cc for testing. well, my headache was gone immediately, and it stayed away that whole day and night. However, the next morning when I woke up, I had a spinal headache that was only relieved by lying down.
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