Chronic head pain like steel bands crushing into my skull

*GG*

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I agree with Athene, meditation is just a nightmare with this kind of head pain. My whole problem is lying flat the pressure and pain in head increases even further and meditation is nigh on impossible, even sitting up with my eyes closedthe pain and pressure get very bad. it's a real problem as getting into a deep restful state with M.e is so good for the M.e body, but the head pain prevents it.

Athene, many thanks for your replies, very appreciated, especially as I know you cannot be on the pc for longer than an half an hour a day.
Well meditation is "easy" to do and does not cost much if anything at all. I had a major Flare up of pain last Fall and tried anything and everything. I go to a place where you pay what you want, it's donations! I am told by the instructor that you can do meditation in 4 different positions. Standing, seated, lying down and another? Anyways, he also says that even if you only meditate for 2mins/day it is better than doing it 1 hour 1 time/week.

I figure it could not hurt to try?

GG
 

anniekim

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Stone and Wayne, many thanks for you kind and detailed replies, both were interesting and helpful. Stone, as Athene said, if you know what migraine medications were in the infusions, it would be incredibly helpful to know, many thanks.

Ggingus, yes, I have tried on many occasions to meditate, but as previously explained in this thread, lying, even sitting (and am too ill to stand) makes the head pain and pressure much worse, meditation is very difficult with this kind of head pressure and for me has not been helpful but actually makes the pain worse.
 

anniekim

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That's interesting Stone. It would be very interesting to know what was in the infusion.

Anniekim, I suddenly remembered abot the problems with lying down. When it was really bad I had to sit bolt upright all night, but when tolerable, I could lie with my upper body inclined at about 45 degrees and eventually, through sheer exhaustion, fall asleep. I set up a kind of "wedge" of pillows to support my whole upper body and also put a cushion under my knees to stop me sliding down the bed, which tends to happen when you fall asleep.
If you fiddle about you should be able to find the angle on inclination that you can tolerate.

I have often wondered if this increase in pain from lying down is related somehow to cerebrospinal fluid - maybe something flows upwards and increases the pressure further when we lie down? I just wonder because, with this head pain, it goes down my neck and into my upper back too.
Thanks Athene for this reply. It's an interesting and plausible theory that the increase in pain from lying down is related somehow to cerebrospinal fluid. I find it hard not knowing what causes all this pain....
 

Athene

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Anniekim,
Have you read the research about abnormalities in cerebrospinal fluid in people with CFS? I haven't seen it all but I do know that nearly all the CFS volunteers had severe headache, which went away for about ten days immediately after their spinal tap then gradually returned. There may be something in the research that explains it. I just don't know where the links are... anyone???
 

Wayne

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Report From the OFFER 2010 Conference (Spinal Compression Subset)

I do have a question though, you say you suspect many 'people on this board have chronic pressure on the 12 major cranial nerves exiting the brain stem'.
Hi Annie,

Below is an excerpt from a remarkably comprehensive article written by Cort entitled:

"XMRV, Solving CFS and Advances in FM: Report From the OFFER 2010 Conference".


Best Regards, Wayne
.....................................................................

by Cort

Spinal Cord Compression Subset -

The other subset that is emerging is a spinal cord compression subset. He gave the impression he thought that spinal cord compression was voodoo for many years but now appears firmly convinced it plays a significant role in some FM patients pain. It occurs when the spinal cord canal narrows putting pressure on the spinal cord and appears to happen mostly in the neck area.

He noted that animal studies have shown that light spinal cord compression results in autonomic arousal (CHECK!) and that neck trauma (from car accidents?) is common in fibromyalgia. Procedures to reduce the compression of the spinal cord have been very effective in some people.
 

Wayne

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Wonder what the procedures are?
Hi Maryb,

That seems like such a pragmatic question to ask! :Retro smile: I wish they would have supplied that information as well. I can share one interesting procedure that I would put in the mix. It's called Bio Cranial therapy, and I posted it about it on this thread a couple years ago. Be sure to check out the testimonial story about the woman who had debilitating FM for nine years and totally recovered using this particular therapy.

Best, Wayne
.....................................................

4/1/08 1:44 PM Bio Cranial Therapy - Major FM Relief Story - AtlasProfilax

Hi All,

I just started researching Bio Cranial therapy in the past couple of days and am getting a similar feeling about it that I first got with Atlas Profilax (from which I eventually experienced remarkable results). The similarities between these two modalities are that they both address structural issues (in different ways) in the cranial/upper cervical area. The following is the first paragraph of a story about a woman's amazing results with this therapy, written by her husband Mark Ridder.

"My wife has suffered with debilitating Fibromyalgia for 9 LONG YEARS of chronic pain with virtually no relief. Thanks to God’s good grace, she has recently found miraculous relief from debilitating and disabling pain." This link will take you directly to this couple’s remarkable story.

In this story, Mark Kidder describes their excruciating ordeal with doctors and therapies of all sorts over a 9-year period.. A therapy called Bio Cranial therapy finally gave her relief from her pain. She is now apparently back to full health. What’s remarkable is that this therapy only takes a few minutes to perform.

I researched Dr. Stuart Marmorstein's (D.C.) website (this woman's Bio Cranial practitioner) the past couple of days and have been impressed with this man and his approach to wellness. His focus on addressing structural imbalances in the Atlas and cranial areas is very much in line with my own success with Atlas Profilax.

But Bio Cranial therapy addresses imbalances differently by affecting the very tough sheath surrounding the brain and spinal cord called the dura mater. This dura mater can become constricted and cause all kinds of pains. Because of its proximity to the pituitary gland, it can also adversely affect our endocrine system. Dr. Marmostein claims to have completely cleared up his own long standing hypothyroidism from having this therapy done.

Dr. Marmorstein posted a 15-page article on his website entitled “How to Get Better...Really Better...with the Head to Foot Approach”. You can go directly to this .pdf file by clicking here. If you choose not to read the whole article, I would suggest at least going to page 10 where he discusses the nature and importance of the Dura Mater.

I've long had an interest in the "structural" aspect of ME/CFS and FM. I think for many to most of us structural problems are a contributing factor, for others, it is a big factor, and for some of us, it can be a huge factor. I feel I belong in the latter category, based on my own experience with Atlas Profilax, and various kinds of cranial therapy.

There's much more to this, but I would encourage anybody who has had an interest in Atlas Profilax or other types of gentle upper cervical chiropractic methods, to do some research on this modality. I expect to follow up on this further, and will post more as I learn more.

Regards, Wayne
[This Message was Edited on 04/04/2008]
 

Athene

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This is interesting Wayne, thanks for the info and links.
I was in 2 car crashes and had very severe whiplash both times. I also had a scan about 5 years ago which said there were "bony deposits" along the inside of my vertebral column on the left hand side of the neck area. When I have headaches the pain often goes down my neck and spreads out across my shoulders, especially on the left hand side.
Do please post more if you find it, Wayne.
 

maryb

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Wayne I did once look for an experienced Bio Cranial therapist (in UK) but could only find osteopaths who offered cranial stuff - not the experience I was looking for really.
Re spinal taps - or lumbar punctures as we call them - I had two at the beginning of my illness when they were looking to find out what was wrong with me - my head was never right afterwards - (some say it's never been right:)) now if only they had done a viral scan instead - who knows.
Our NHS is wonderful for anything major and if they find it you'll normally get the best treatment in the world, but if they test and find nothing - out you go - in a wheelchair if necessary (as I did).