Hi MM3,

Yep, it's normal. Spinal fluid goes around the brain and down your spine, so increased pressure can go all the way down. Dr. Tanne (the founder of ihrf) was interviewed on a blog radio show, and he talked about it. He said how the pressure can effect the nerves in your spine and radiate out towards your back. He said it can feel arthritic, but not really. I know I usually feel my pressures in my neck and it pops all the time, and the recent storms made me feel the pressure all the way down my spine.

It was a really informative show, Dr. Tanne was great and he talked about all sorts of things, although the host does carry on a bit, and there's also the appearance of a certain pirate we know.

http://www.blogtalkradio.com/ThePositiveSide

Someone asked about massage and chiropractor, but he said the only thing that really helps is to reduce the presure.

Hang in there!
Bax

Hi MM3,
Sorry, I must have been spacing out from before when you posted. Bax seemed to have found the reason why this is happening. Whenever I hear radiating pain I think of a nerve being affected. Usually standing for me is the best since it is taking the load off my back, whereas sitting is worse..I can only bend at my knees to protect my back.
I'm sorry this is happening to you. Are your headaches back? Jazzy

Hi Bax, thanks for the info and how to listen to the blog...hmmm, a certain pirate you say? I wonder who it is, lol.
Jazzy

MM3,

As it stands right now I can backup Bax in what Dr Tanne said with pain free proof. During my high pressure HA days I could hardly get out of bed in the morning as my neck and back of my head was in so much pain. Once I got up and out of bed things would get better as the pressure lowered in my head. I would still be very sore all day.

Since we started the drain test last Monday (5-11) and my pressure has been lower I have not had that feeling at all, it basically went away. I still have a little residual soreness when I turn my head all the way to the right or left but I believe that is slowly healing now that the pressure is gone.

Just curious, do you recall your back pain level while on Diamox vs now? Does it align with high press HAs?

TJ
Possible Pirate Sighting

Thanks Bax for the information. I tried to listen to the radio show the day it was on but had some trouble logging into it. Prior to my diagnosis I mostly struggled with the neck and shoulder pain, but occasionally I would have the low back pain too. I went to a chiropractor for awhile but it never helped. I also tried massage therapy a few times and other than feeling good in the moment, the relief never lasted.

Jazzy...Yes my HA's are back. I have a lot of pressure and the constant wooshing has returned. Doing just about anything can cause the actual head pain. I went to my daughters dance competition the other day and out to dinner. By the time I got home I had to go straight to bed and I've pretty much been down for the count ever since. That was on Saturday. Tonight I have taken 2 Dilaudid, 2 Valium (cause my dizzy spells have returned), and one Flexeril tablet to help with the muscle cramps. Hopefully, I'll get a good nights sleep. My parents come up in two weeks...I still have some flowers to plant and a room to paint!!!!

TJ....So glad to have you back to help my friend. Thank you. Interesting how getting up and moving around helped to lessen your pressure as mine seems to intensify. To answer your question about the Diamox...I don't recall having these muscle cramps while on the medication. But, then again, I was drugged up most of the time and don't recall much. But, I would assume that the medication did help. Therefore, leading me to believe that the high pressure HA's are a contributing factor. I guess I just needed the confirmation from someone else as I hadn't heard of this before. Diamox may still be a answer for me, but, as Bax had stated before I just think that my doctors upped the dose so high that they missed the therapeutic window and I just ended up miserable all the time. I see the specialist on the 8th of June and hope to gain more insight then. Her secretary told me to be prepared to visit with the doctor for at least 3 hours because she is very thorough. In the meantime, I'm just trying to be proactive with the signals my body is giving off. Anything to keep me out of the crisis phase.

Thanks peeps for your support!

MM3

MM3,

There is a reason why my back of the head/neck pains got better after I got up and that is while standing, your ICP is lower in your head than when laying down. My pains were high in the spinal system hence went away when I stood. Yours are lower in the spinal system hence get worse when you stand. That makes perfect sense to me. Does that make sense to you?

TJ

Ummmmm....no.

MM3,

When you get a lumbar puncture your are laying down so the pressure they measure at the bottom of your spine is at basically the same elevation as your head hence that opening pressure is the same as the ICP in your head.

When you are standing up your head is a couple feet or so above where they do the lumbar puncture. Even though 2 feet doesnt sound like much, the pressure differential between your lower spine and your head are now considerably different to the point that normal ICP range is 8-18 while lying down and actually goes slightly negative when standing up. You might try to Google ICP range and look at Wikipedia. They have a good explanation.

Let me know if you are still having trouble wrapping your arms around it. Also remember what they tell you when you have a low pressure headache??? Lay down, as that causes your ICP to increase hence eliminates your low pressure HA.

TJ

This makes alot of sense... I talked to my Neuro about my neck popping on its own alot (like Bax) and he seemed to blow it off. I do better standing. When I sit for long periods of time my back hips and legs hurt. When I lay on couch in the evening I feel the pressure build up so I sit up for a bit...(and I than remember better go take my Diamox)

Hello everyone,
I am new to this, but soooooo glad that there are others suffering from the same symptoms I do. I felt that there was no one that could understand what I am going through. The back pain, neck pain, migranes, etc., are all "normal".
Does anyone get confused, dizzy, and/or unable to think well when fluid is increased?

TJ & Bax: Sorry I hadn't responded earlier, but, I think I get it. Kind of. Thanks for the info.

My back just continues to feel worse, actually worse than my head...is that possible? Can't seem to get comfortable no matter how I sit although it does seem to get a little better now when I'm standing. At first, I thought it may be a result of the LP's but, I guess not.

Dymin: Welcome. You'll find a lot of good information on these posts. But to answer your question...yes, I do suffer from dizziness but mainly vertigo which I've had a tough time with today. And as far as confusion and inability to think....ABSOLUTELY. I've gotten off of the wrong exit on the way home, I've backed into my husbands car because I forgot it was in the driveway, I forget appointments, what I'm saying, what I was doing, etc., etc. That is all part of PTC. So...welcome to the club.

MM3

MM3

You mention confusion as being part of PTC. Do you think its the PTC or the meds we are perscribed? For me....I didn't notice any forgetfullness until I was put on the diamox.
But now I wonder if its the PTC???

I know meds can raise hell with our bodies and I feel much better being of Diamox. My 2 cents worth says it may be a little of both but I know for a fact for me that it was always worse when I had high pressure headaches.

The IHRF is currently putting together a study to try to correlate at what pressures (ICP) does one start to experience memory and/or congnitive issues. If you look at hydrocephalus and other neurohydrodynamic disorders (that is what IIH is) you see that pressure effects these things so it is logical to think elevated ICP for IIH patients could cause similar issues. That is the hypothesis the study is being built on.

TJ

Thanks MM3! It feels good to know that I am not the only one "in the world" anymore. Everyone just thinks I'm ditzy and unorganized.

Angeline: I always felt that way, after taking Diamox for a year, I got off because it did not matter if I was taking it or not...I still felt the same way...

DYMIN - I was much worse with the forgetfulness and lack of concentration before I was put on Diamox...
I have hade Tension HA pretty much my adult life. Than when the HA started waking me up and stayed with me all day for a month my co-workers made me go to a Dr. And my job suffered because of it... Work that normaly took me a couple hours to do, it was taking me all day!!! I couldn't concentrate.. After the dx and given diamox my HA are better (NOT gone just better) and my concentration is much better. I still forget alot and get side tracked very easily like MM3... I take my daughter to school all the time and 2 days in a row I passed the turn and had to turn around. Just tryping this I have had to stop 3 times and gather my thoughts again.

But everyone is diffrent...

I know that I have found a all new respect for anyone with a HA!!!!! Where I work there is a guy who I didn't because of certian things, just recently I found out he has a similar condition. He had a blockage and his pressure was building around his brain he didn't know untill one day he thought he was having stroke. (he had HA like us and Drs. told him they were migranes) He got a shunt and now is a whole new person. we welcomed eachother to the brain club....(even though he has underline cause and most of us don't)

SORRY THIS WAS SO LONG!