Just need to rant to people who "get it". I have had a really bad week with my headaches! :' (
For the last week and a half I have had a headache that just wont stop -- tried aleve, advil, tylanol, BC Powder and all because the Relpax migrain med's are not working anymore either. Called into my Neuro and he said "Well the only thing I can do is call in a script for Vicodin (which I explained to him didnt take away the pain when I sprained my ankle so I wasnt sure it was going to work - He said that is all he could do) So I just took 2 hoping beyond hope that this time it might just work.

If I were a horse I would have been taken out back and shot a week ago because I am useless or atleast that is how I feel! I still have a house to run, dinner to cook and a job to hold so I go about my day in so much pain that I cry when noone is looking and smile when they are because afterall we have all heard it "BUT you dont LOOK sick" .... AHHHHHHHHHHHHHH

I would love for some of those people to walk a week in my shoes! Just one week!

My Neuro upped my Lasix's to 80mg a day from 40 - but by these headaches it appears 80mg is not working either! I am sick and tired of being sick and tired!!! :(

Thanks for listening - I just needed to be around people who understand what its like and know that when I say "my head hurts" I am not talking about a small little headache! I am talking about the fact it feels like my head is in a vice grip!

Blessings,

Jessica

Sorry hope you get some relief soon, i am on 80 mg daily of lasix also and headaches are creeping back to going to up the amount after talking to doctor. Go ahead and let it out seems to be the thing and place to do it..

Hi Jessica. So sorry to hear you are having so much pain. You deserve a break, a big one, but all I can do is send you this
Sounds like you may need some more aggressive help in getting your headaches under control. Have you talked to your docs about surgery to relieve the pressure? May be time.

hi Jessica;
I saw your response on my sleep apnea thread, that you got on CPAP. I am worried that the reason your headaches are so bad is that the CPAP is making your IIH worse. recently when I found out how much pressure I needed and went up, I crashed. I just got a BiPAP; this is a special CPAP machine that lowers the expiratory pressure so that you breathe out against a lower pressure. I found that with the higher pressures the expiration felt like a valsalva: a bearing down that can increase intracranial pressure. I seem to be doing better on the BiPAP and am slowly going up on my inspiratory pressure. Please go see your sleep doc and ask for a BiPAP. none of the sleep docs seem to know this but a CPAP of 12 has been shown in scientific studies to increase intracranial pressure. I mean even one of the fathers of sleep medicine, Dr. Guilleminault at Stanford didn't know this, but it is in the scientific literature. and we know that Valsalva will increase ICP. for insurance to cover the other machine, you need to show that you are failing CPAP, so stress that your headaches are getting worse. tell the doc "the valsalva effect of exhaling against the CPAP pressure is raising my ICP and I need a BiPAP machine".
good luck!
Deb

Wylee wrote:

Hi Jessica. So sorry to hear you are having so much pain. You deserve a break, a big one, but all I can do is send you this
Sounds like you may need some more aggressive help in getting your headaches under control. Have you talked to your docs about surgery to relieve the pressure? May be time.

Thanks so much for the !!! My dr. called in some Vicodin for me - (has never worked before) but it worked last night!!! I will say I was higher than a kite but I didnt have a headache -- one trade off for another I just found a headache clinic in m town that works with IIH patients so Iam going to call and try and get in to see her ASAP!

Thanks for the !! Much needed and accepted!

Sophiasmom wrote:

hi Jessica;
I saw your response on my sleep apnea thread, that you got on CPAP. I am worried that the reason your headaches are so bad is that the CPAP is making your IIH worse. recently when I found out how much pressure I needed and went up, I crashed. I just got a BiPAP; this is a special CPAP machine that lowers the expiratory pressure so that you breathe out against a lower pressure. I found that with the higher pressures the expiration felt like a valsalva: a bearing down that can increase intracranial pressure. I seem to be doing better on the BiPAP and am slowly going up on my inspiratory pressure. Please go see your sleep doc and ask for a BiPAP. none of the sleep docs seem to know this but a CPAP of 12 has been shown in scientific studies to increase intracranial pressure. I mean even one of the fathers of sleep medicine, Dr. Guilleminault at Stanford didn't know this, but it is in the scientific literature. and we know that Valsalva will increase ICP. for insurance to cover the other machine, you need to show that you are failing CPAP, so stress that your headaches are getting worse. tell the doc "the valsalva effect of exhaling against the CPAP pressure is raising my ICP and I need a BiPAP machine".
good luck!
Deb

I will talk to my dr. about it - thanks! I am only set on 10 so I dont know if that is causing it or not. My CPAP has a "Comfort feature" that makes it work like a BiPap in that it reduces the pressure when I exhale - but I will most surely check into it!