Hello.
Well, I had my LP yesterday and as expected the pressure was up to 30. It has ALWAYS been 30 at every single LP I've had. It's never been higher because I honestly think that 30 is my tolerance level and once the pressure reaches that point I just can't cope and seek medical intervention. It took 4 attempts for the Doc to get the needle in the space so today I'm very bruised and sore. Here's the reason for my post though.....I'm really disappointed with the results of the LP. I felt awesome initially and felt absolutely great for the rest of the day, honestly felt I could backflip down the street, no headache, no brain fog, clear thinking AWESOME. And then today I've woken up feeling EXACTLY the same as I always do, headache, tired, brain fog the usual. I don't think I have a low pressure headache as the pain is constant and doesn't resolve with lying down and I've never had one in the past.
Surely my pressure can't be back up in less than 24 hours, can it? [You must be registered and logged in to see this image.]

Unfortunately, it can. I usually take advantage when LP goes well because I know I'll feel the same way in the morning. I'm sorry your pressure seems to be up again already, but at least you did get some relief. Have they discussed changing meds or doing a shunt? Those are things you might want to consider if current regiment isn't controlling pressure. If you're not already, keep a information.

Take care,
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It actually only takes two hours or so for the pressure to build back up to as high a pressure as before the lp. What you are feeling is why I would always start my Diamox just as soon as I was put in the recovery room, to try to keep the pressure down, longer.

The one good thing is that you know that lowering your pressure brings you relief. So, now you need to find a way to keep the pressure down. I hope that you will find a medication to do that. If not, a shunt may be in order.

Time for a talk with your doctor!!

DARN!!! I was hoping you'd all tell me it was just a side effect and the pressure couldn't possibly be up lol!
Oh well, you win some you lose some, as they say!
I think it's time for a very serious chat with my Neuro, when I eventually get an appointment through to see him that is! I can't keep having LP's every 6 weeks and the medication isn't helping, in fact sometimes it feels as if the diamox is making the headache worse....not possible, surely?

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Actually, I hate to say this, but the Diamox seems to give me a headache. My symptoms are mostly visual and usually begin and stay in and behind my eyes, as far as pain, soreness, etc. Since I have been on the Diamox, I have developed another type of headache and some nausea not associated with my eyes. It's possible the IIH is just progressing/changing, but Diamox has so many crazy side effects...

I have also heard others mention headache associated with Diamox.

Just my two cents... but hang in there! IIH is a difficult condition to understand. I know I'm still learning and don't know what's going on half the time. That's why this forum is so wonderful. Everyone understands what you are going through. At the same time, remember that everyone is different and has a different path with IIH. You will need to experiment a bit to try and discover what helps you the most and what treatments are in your best interest. But, also, never forget that we are here for you and will help and support you as much as we can.

[You must be registered and logged in to see this image.]Markymark!
this site really has been a godsend. I'm sure you'll understand when I say that you often feel very isolated with this condition, like you have no one who understands. It's wonderful to have this sounding board, as I've even been told by Doc's that I've come across that some of the symptoms I'm describing are not related to the IIH. Yet I come on here and lo and behold, people are describing things that my Doc's say aren't recognised symptoms! It's fantastic to know I'm not going bonkers or suffering from dementia. I'm still all so new to this as I was only diagnosed last July. You're right in saying that I need to find what works for me, I've already discovered that paracetamol and codeine give me "bounce back" headaches, so they've gone out the window. I have been considering doing a little experiment with my diamox to see if it does indeed make my headache worse, so I'll see how that goes and report back to my neuro what I've discovered.
Thank you again.

I would just caution you to step down off the Diamox..if you completely remove it, you will probably get headaches..lol, you're right, you just can't win. If you're really concerned, I would talk to pharmacist about appropriate way to step down..at least notify your doctor and keep a symptom log. Mark is right.. everyone is different, so just keep trying. Hang in there!!!

I second the idea that you would need to ween off the Diamox. And ween on, for that matter lol. However, I should have also said that, when it comes to medical treatments/medications, make sure you consult with your doctor BEFORE you experiment. Some of these meds do some whacky things, and you don't want to be surprised or put yourself in jeopardy. On the other hand, I am a big advocate of keeping food/symptom logs and playing around with personal diets, exercise regimens, heat/cold, etc... I have found quite a few no-no's, like salt and sugar and MSG and some soy products, as well as some surprising aids, such as an occasional steam room visit (I know that sounds totally wrong for someone with ICP but it makes me feel better) and the "Relaxation in a Bag" flax seed eye compress and stacking pillows so I sleep almost sitting up (takes some getting used to but it cuts down on the hideous morning pressure).

it sounds to me like u r heading towards a shunt when my LPs got really close together when the prussure was going up almost straight away after LP over 48 LPs all together and a shunt was the next step x x