Danielle,
I am sorry you are suffering on top of suffering. I know how much that sucks. From what I know about my body, it does sound like it could be a low pressure headache. Although, I have had my IH headaches manifest themselves in different ways- leaving me feeling the way you do now. When you lie down how long does it take for your headaches to feel better? Do they continue to feel good if you lie down flat for a long period of time? When you first wake up in the morning, before you sit up, do you have a bad headache? Does it feel worse when you sit up from bed?
If you want, you can try going down for a few days to see if you feel better. If you do indeed feel better then you know your answer. If you feel unchanged then it may be something else.
Mallory

Thanks Mallory, I have never had the headaches in the morning like everyone complains of. My headaches have always gotten worse the later in the day it gets or the more stress I have going on. The few consistent things I have had when my pressures are high are the pulsating ears and the pain behind the eye. Those have always been there with the high pressure. With these headaches I do not have those at all. It is an all over headache but mostly the pain is worse around my upper neck. I might try to decrease my dose but I have the slow release capsules so I would have to drop all the way to 500 mg/day since I can't break the capsule open. ....I would be thrilled to go back to 500 mg/day though! :-)
Danielle

OH no I hope you start feeling better soon but maybe this info might help you? I found tylonal never worked for my pain i tried advil and ibprofin they both worked way better then tylonal ibprofin works differently then tyonal and advil works different then ib and tylonal try different brands of OTC pain meds tylonal doesnt work for me anymore I hope that helps your headache!

Thanks Jenna, I agree Ibuprofen/advil do work a lot better but IH suffers aren't suppose to take them as they are known to increase your CSF. I wish I could take them!

Danielle

Well...to me, since you said it gets worse later in the day and from stress, in my experience, it does not necessarily sound exactly like a low pressure headache. It sounds more like you may need have tension headaches? I am not sure, though! And I do not know if Diamox can cause these...I could not even tolerate taking a fourth of the 250 mg pills a day, so I couldn't take it!

As for the comments regarding Tylenol and Advil...I cannot take Tylenol at all, as I have an adverse reaction from it and every single time I take it, I vomit violently...so none of that for me! But if you can take it, try taking Tylenol PM when you have down time? Sometimes I noticed that the PM kinds help you relax a little more...

And I did not know you are not supposed to take Advil with PTC!!! That is all I take when I have an achy head...maybe that is why it has not been helping and I feel worse in the past few weeks? Hm. :(

I hope you feel better, girl!

Heather

Thanks Heather! I don't know if it is a tension headache or not. I thought about that but I've never had them before so I don't know why all of a sudden I would start having them but who knows. I kind of feel like my body is revolting against me. :-)
My allergy meds knock me out so I don't think taking tylenol pm would be a good idea, lol I might not wake up for a week! As for the Advil, my internal medicine doc told me that the only approved OTC meds for PTC patients was tylenol. Everything else has the potential to raise either CSF or BP and is a no-no. The pharmacist said the same thing. I don't know if it is true or not but I stopped taking anything but tylenol for now. I am trying to avoid the prescription pain meds as long as I possibly can!
I'm sorry you aren't feeling so hot! You have been through it lately! Get better girl! :-)
Danielle

Oh no! If Advil is bad...and I can't take Tylenol...and I refuse to take any narcotic pain medications again...suffering is what is left! Ew. Not a fan of that one, either!

I am trying to get better! Trust me! I have a Carrie Underwood concert to go to in eighteen days and she is my absolute favorite, my idol...I CANNOT FEEL MISERABLE THAT NIGHT! :) I have some dancing to do!

I had to tell someone about the concert! Haha :)

Thank you for talking with me! You are an angel :)

Heather

Lol I have been taking ib for quite some time. I never found it worsened my headaches. I realize that everyone is different, so I did this against what others told me.
I also have headaches that get worse as the day goes on (opposite of what usual IH patients experience).
Tension headaches can be brought on by stress. So Heaher could be right on this on. If it persists you should go see your neuro or PCP. This way you get the advice from a doctor. I know it's another appointment to go to, but they have more experience than we do- they may be able to sort your headaches out.
Just a short story I want to tell you...
Last year around May (diagnosed in March 2011) I stared getting headaches that were only one sided, usually the right side. I thought that I was all of a sudden getting migraines instead of or along with my IH headaches. I also started getting headaches that were in my right temporal lobe that were shooting pain that lasted for five minutes or so. I didn't understand what was going on. I went to see my neuro, who had no clue what the headaches and pain might be. As she thought about it, she told me she thought they were my IH headaches; that the change might be because of changing CSF flow or a momentary CSF blockage. Now, I realize I also have Chiari so I do not know if it can happen to others, but since she didn't know I had Chiari at the time I will say it can.
Hugs to you! Hope this somewhat helped. :)
Mallory

Mal yes it can chiari i mean, mine is nearly resolved. All my bad symptoms were the result of my brain herniating from untreated high pressure.
I still take IB, all my Dr.s cant make up their minds if i do or dont.

For what it's worth, here is a site where you can check on what drugs interact with Diamox (acetazolamide):
http://www.drugs.com/drug-interactions/acetazolamide,diamox-index.html#I

Looks like Advil (ibuprofen) is okay, Tylenol (acetaminophen) is not.

Hope this helps!
~mg