Awesome name angry...lol! I'm so sorry for you right now,I know how that feels and it feels worse than "shirt" by far. I know that Registered massage therapy might be a good start and most chiropractors do have an RMT in the office. I asked my MD if chiro would be good for me and she was not for it so I left it alone for a couple years now. But I really really think that my one longer right leg has caused my spine to curve and the rest of my body has overcompensated and my posture is so out of alignment its crazy. To me I really think it has something to do with my PTC and especially the pulsatile tinnitus. Would love to hear how it works for you and if I go I will update. My pain level is ok now but my tinnitus is out of control and always have the general head and eye discomfort. Take care, Nxt

Thanks for replying.

Oh, wow, you have pulsatile tinnitus too? Were you scared to tell anyone when you first heard it? lol I had no idea what it was. Mine sounded like a squeaking. Especially with any straining or when I laid on my left side at night when the blood flow was greater I guess. It went with my heart beat. And well, um.... you know... uh.. other times.. lol times. Lets just stick with when ever I was using a lot of energy or exercising. ;)

I have not met many doctors who "recommend" chiropractors.... I go to one, sometimes weekly, sometimes every few months. Whenever I feel like I need to go.

For awhile I benefitted from seeing a chiro. It seemed to help my headaches, and it definitely helped my back and hip. Then something changed. Now when I go to see her even one mild adjustment and my head pain explodes. I can't even drive home because my headache turns into a blinding 10. She uses mild methods, too, a tiny little tool. One tool doesn't even touch you; it uses sound waves to move the bone. Her methods haven't changed, I have. And I have no idea how.

I bought a soft neck collar, that helped me tremedously. Have your hubby press on the muscles around shoulder blades I found the spot that takes my pain away immediatly when pressed hard. Oh a tens unit kicks those pains in their butt.

My Cousin is a chiro, and he says he does not see that adjustments would benefit PTC...he feels that what would help is some of the machines in his office like the "Spine-a-lator" which you lay down on and it feels like gentle heated pins and needles all over, and ultra sound therapy...he says these things bring blood flow to the source of pain which promotes healing, and as a Chiro, he would not do adjustments on someone coming in for relief on aches as a result of a rare illness b/c he is not an MD and does not know the long term affects adjustments might have on rare conditions that were not studied in school...

I have tried the Spine-o-lator and I love it :) Ultra Sound therapy is also helpful and gently relaxes muscles and reduces pain

Feel better all,
LuLu

I see a chiropractor that specializes in head and neck alignment and it has really helped me. He practices a method called the Blair Technique, or Method.
http://www.blairchiropractic.com/
You can find a practicing doctor from this web link.

I sometimes go in with a headache and leave with without one. They do not twist and pop your spine. I also see a massage and cranial sacral therapist at his office as well. It has all helped me tremendously. It probably won't make IIH go away, but it has helped control the symptoms. I have no doubt that improving the flow in the neck helps IIH symptoms.
I do not think a regular doctor or surgeon would recommend a chiropractor, but my holistic medicine doctor does, and she is an MD and worked and taught at University of Michigan for 20 years.
It has really helped me and think anything that may help is worth a try. I would, however, seek out someone that specializes in head and neck alignment. My chiropractor had heard of IIH and he and some colleagues had even been researching how chiropractic care may help by fixing misalignments that may be impeding outflow in the head and neck, causing increased pressure.
Good luck
Amy

Thank you everyone for sharing your thoughts and experiences. I've had a really rough night. Well Probably going to lay back down some more- now my eyes are blurry. On a similar subject I have had fibro for 8 years and then tender points has one at the base of my skull. This is the same area that really hurts a sickly hurt with or without touching. I'm wondering if theres a second condition the doctors are missing. An call me lucky, had an ultra sound an I have two water based cyst on my thyroid in my unhappy neck. grrrr.

I have a friend with IIH who also has this occipital pain, and has wondered if she has occipital neuralgia on top of IIH. I'm not sure about it. I think a TENS is worth a try. I recently found this paper from 1979: http://www.ncbi.nlm.nih.gov/pubmed/762669
which suggests that electrical stimulation of the cervical area might reduce CSF formation. so it might help in multiple ways, who knows.

Fibromyalgia has been shown to improve with stabilization of the upper airway in sleep, suggesting that sleep apnea is a significant etiological factor, esp. knowing the sleep problems seen in FM. Insomnia is prominent, and the recent research on insomnia leads me to conclude that it is usually caused by sleep apnea that is many times undetected. OSA can cause IIH, and has been shown to raise intracranial pressure, so that any degree of OSA will make your condition worse. given what you describe, I think you should ask for a sleep study if you haven't already had one.

I'm not sure chiropractic helps everyone, but perhaps osteopathic manipulation would be gentler and more helpful. my son has IIH too and we didn't know this when he was younger. he had these awful screaming fits as an infant/toddler; would wake at night with them. they would go away if I had his neck adjusted by the chiropractor; it was always his C1 that was out. then I started taking him to the osteopath and that problem went away. they do subtle manipulations of the cranial bones and it is supposed to make the CSF flow better. perhaps it can open the jugular foramen some and at least temporarily deal with the forward head posture that is related to OSA and which I suspect may play a role in compressing the jugulars and increasing resistance to CSF outflow. my mother I am certain has OSA and IIH undiagnosed because she won't listen to me and get the proper testing. she's been ill her whole life. she cannot survive without her osteopath, swears by it.

oh, on the thyroid. how big is your thyroid/the cysts?
I went undiagnosed for 11 years, but when my symptoms of IIH first started I had hyperthyroidism with a huge goiter. I had a total thyroidectomy and I felt better as soon as the anesthesia wore off; it was fantastic. now I think that my thyroid was impacting on my jugular veins and increasing resistance in them, contributing to the IIH. I went into remission for many years after that. something to consider, having the cysts removed if your thyroid is enlarged; might make a difference. I'd be surprised if your docs saw the connection though.

I too think I have occipital neuralgia. And the pain starts at the base of the skull. If the doctor pushes on that nerve its very sore and painful. I have it primarily on the right side only. I also have right hemisphere headaches and right eye pain. When I got a nerve block shot in that nerve the pain went away. For only 3 days, but it was obvious that the occipital nerve was the culprit. Over the next several weeks, and with chiropractic care, the headache went away. My C1 and C2 were way out of alignment. I was also getting laser therapy on the overly tight neck and shoulder muscles. This helped a ton.
I have to had laser therapy or massage in about 6 weeks now and the pain has returned as a dull pain, but when my neurologist pushed on that nerve and almost jumped out of my chair. I will start the laser and massage therapy again. I am also trying some antiinflamatories.

I really think that the long term stress and pain led to my tightened muscles and thus secondary pain and problems. My muscles literally will not relax. The tighter they get the worse I feel and migraine symptoms return. I think this cascade of painful problems happens to all of us. It has taken a long time, a shunt, and a stent in my brain, to unravel the layers of pain I have been in. When they start peeling away I am more able to pin point the problem areas, if that makes any sense.

my massage therapist does cranial sacral therapy and it does wonders for me! there was only 1 time it made things worse and I probably needed to finish and have a longer session we think. I felt like I was going to puke in the middle of the session ended up feeling sick for a week, but honestly I was doing alot better when I was having massages and cranial sacral. I went to a chiro and it terrified me having my neck popped/cracked. It didnt help with my neck pain.