High intracranial pressure symptoms anyone?

[Merida]

@Molly's mom
I was offered shunt surgery years ago because I had a very abnormal CINE flow study. I chose to try a traditional osteopath/ craniosacral / acupuncture to try to solve this problem. Plus, various metaphysical approaches that would have seemed very far out years ago. But I not not well yet.

There are wonderful articles on NPH and related at Michael Flangan's site - the Downside of Upright posture. The only thing that he does not discuss is the importance of the jaw in the function of spinal fluid and blood flow. You Tube videos by Brendan Stack, DDS on jaw appliances and CNS function are amazing. Had an appt with him 6 years ago. He is one of these rare, brilliant people . Long story.
Keep well.

 

[Molly's mom]

@Molly's mom
I was offered shunt surgery years ago because I had a very abnormal CINE flow study. I chose to try a traditional osteopath/ craniosacral / acupuncture to try to solve this problem. Plus, various metaphysical approaches that would have seemed very far out years ago. But I not not well yet.

There are wonderful articles on NPH and related at Michael Flangan's site - the Downside of Upright posture. The only thing that he does not discuss is the importance of the jaw in the function of spinal fluid and blood flow. You Tube videos by Brendan Stack, DDS on jaw appliances and CNS function are amazing. Had an appt with him 6 years ago. He is one of these rare, brilliant people . Long story.
Keep well.

Thanks Merida! I hope you find a solution.
I too try to avoid surgical intervention. In this case tho, I think I would have died if it had continued. I haven't mentioned it, but before surgery I was on oxygen 24/7 for hypoxemia. That resolved and I no longer have the need for supplemental O2. But, the fibromyalgia is still rearing its ugly head and I am very compromised by it. The brain fog can be quite severe, I don't usually shop for groceries, but a trip to the grocery store yesterday really did me in.

Best of health to all!

 

[Merida]

@Molly's mom
Yes, I so appreciate what you say. I am not sure that I won't have some surgery at some point. I really don't know how much of this can be corrected by traditional osteopathy and acupuncture.

Have you read Diana Driscoll's posts? Very important stuff, I think.

 

[ScreamingBuddha]

This is a very interesting thread. My path began with Tinnitus/Hyperacusis and occipital headaches on right side. Just super sensitive. Even wearing a hat pressing on ear cartilage would trigger pain. Sometimes the headaches would occur with mild nausea. On right side of head.

I had a car accident in 1996. Some cervical subluxations. Bad chiropractic treatment made it worse. Twisting and rolling my head. Just retraumatized the connective tissue.

I went to an Upper cervical specialist last year. X rays showed misalignment of C1 & C2. And some degeneration at C5-C6.

I had a lot of fatigue last year..but now more Jumpiness..anxiety. Fibro Doc did an eye test to check for increased CSF pressure. Left eye was slightly high..but right was much higher. I am on Low dose naltrexone and ativan (when thungs get too jumpy). Also had to bump up Vit D (was very low) and magnesium...because I was spasming out and regulating emotiins was a challenge with paiin and anxiety.

Could this be due to the injury?
I also have ADHD symptoms (did psychoeducational testing in 1998) and my working memory has been lousy the past couple years.

Going for an MRI head and neck tomorrow.

Any suggestions? Thoughts?

Thank you,

SB

 

[Wayne]

So one indication that intracranial pressure is present and diamox might help might be a bad reaction to florinef...Interesting!

It took me about a week to recover from just a single dose of florinef (never took anymore after that). I would recommend anybody giving florinef a try to start out with a fraction of a dose first, to see what kind of reaction might be in store from taking a full dose.

 

[Forebearance]

I wonder if these issues could be related to the issues relieved by Cranial Sacral Therapy.
It is a super gentle non-surgical intervention.
How good it is depends on the skill of the physical therapist who is doing the treatment.
i went to a very good practictioner and it did cure my recurring headaches.

 

[Michelle S.]

I began having excruciating headaches with pressure on the top of my head as if my brains would explode right out after several years of suffering from CFS. I also have the other symptoms you mentioned. My doctor is stumped.

 

[ScreamingBuddha]

MRI Update:
Brain: no abnormalities.
Cervical spine:
Mild uncovertebtal joint arthropy at C3-C4, C4-C5, C5-C6.

Some narrowing of foramin space @ C3-C4 (right greater than left) and C6-C7 (right).

Mild broad-based posterior disc osteophyte complex @ C5-C6..no contact or contouring of ventral cord.

C6-C7 Posterior central disc extrusion. Contacts and mildly contours the spinal cord. "May be symptomatic." No cord edema or myelomalacia.

Not sure exactly what it all means.

I do know that the Hyperacusis can activate if my neck posterior is forward..like in boxing stance..back of head propped up against pillows etc. I also noticed Hyperacusis after doing weight training..when doing any upper back exercises. Lat pull downs etc.

Cold weather is also an aggravating factor. Spasms etc.

Yoga seems to help relax tension.

I guess I am at the stage where I am asking:

What should I be doing and not doing to improve and minimize further deterioration?

I am on low dose naltrexone. About 2 ml each night. Not sure if its doing anything.

 

[Merida]

@ScreamingBuddha
I am just back after long absence - just too exhausted with family commitments and this "disorder." I also had severe ear pain and extreme sensitivity to sound/ hyperaccusis that began about 10 days after the injury to my neck and pelvis that began this 20 year journey. Head pressure - oh yes!!! My first MRIs were read as normal. Though, yes, I had/have straightening of my neck and lumbar curvature, with deterioration in the lower cervical area.

Eventually I worked my way to a great neurosurgeon, Michael Rosner, near Asheville North Carolina. I can not say enough wonderful things about this physician - compassionate, brilliant, kind, knowledgeable on this whole topic. He did a CINE MRI flow study and measured my posterior fossa. The flow study showed significant spinal fluid drainage problems - with blocked areas near the cerebellum on one side ( sitting low) and CSF " jets" in other areas. My posterior fossa was small and was clearly in the same domain as the Chiari people tho I did not have the classic herniation of the cerebellar tonsils.

Also, I had sophisticated urodynamic studies ( had 2 series of these here in L.A. That were useless!!! ) that clearly demonstrated a lower motor neuron bladder. The significance of this is that this type of bladder dysfunction is consistent with tethered cord syndrome.

It might be helpful for you to read at Conquer Chiari site or CSF site to see if your symptoms and profile relates to people diagnosed with these issues.

The problem arises - what on Earth can be done to help symptoms other than surgery? I have spent 19 years on this. Craniosacral - can definitely help but the therapist needs to be an expert. I actually had 2 different craniosacral people get me lined up and I felt great. But it only lasted 6-8 hours.

Myofascial release with a John Barnes trained person may be helpful. Importantly look at Jerry Hesch in Aurora, Colorado. He has videos up on You Tube, and deals with complex neck and sacral/pelvis issues. I am heading there if my current person can not get my sacrum/pelvis functioning. The pelvis affects the function and position of the neck, occiput, and cranial system.

Also, I had some success with a physical therapist who was a pelvic floor specialist.

So, don't give up. I have maintained for years that the reason women are getting diagnosed so much more than men is that we have wider, inherently more unstable pelvises, which can cause issues all the way to the occiput and brain stem area. Especially when there is a little scoliosis involved, a tighter than usual spinal attachment in the sacrum, and/ or ligament laxity with the sacrum/ pelvic connections.

Whew. Please keep in touch.

 

[ScreamingBuddha]

@Merida
Thank you for sharing your experience and insight. Sounds like a long journey..but with excellent pointers. I appreciate this.

I had an ultrasound on the optic nerve she's the...which prompted tge MRI test. Thenultraoumd seemed to indicate increase of CSF on left side slightly..but more on right side. The doc didn't seem to concerned about the MRI cervical issues.

It sounds like CSF may play a more prominent role? I had been thinking it was just cervical structural issues affecting cranial and spinal nerves.

Could scarring of connective tissue in next area contributed to mobility issues and cervical degeneration? Hard to fix posture when things are so tight wound.

I went to the Chiari site. I do see some common symptoms...mostly the headaches...which are less frequent these days...but earlier on I experienced nystygmus briefly. I do experience nausea with neck tension a fair bit. And gut spasms. Depression amd anxiety too. But some of that is likely growing from being off work and just feeling "stuck."
I also tend to "wake" into feeling warm..or chilled..some nausea..which is disorienting at times...once I Get up amd drink tea or something..get myself centered it seems to subside. So needless to say I have a fair bit of health anxiety...which looks a bit like an OCD ish kind of germaphobia. Yay. I truly hope this part can be helped. Its the worst part.

Craniosacral therapy and myofascial release. Yes..I think both are useful. I would do them more often..but its tough to afford presently.

Is there a test I should be requesting since the first MRI showed no brain abnormalities?

I do have a chiropractor (which I havent seen I. Some months) who is an "upper cervical" specialist..but I am baffled that he doesn't do any soft tissue work to support the adjustments? Nor any physio or exercise type prescriptions. I am frusttated with the lack of "wholism" in "wholistic" practitioners

I just do yoga now. I have to be careful and avoid some poses. I gave up Kick Boxing unfortunately...but the fight posture made neck worse and impacts made "fibro" symptoms flare up.

Thanks again..I appreciate your sharing and encouragement!

SB

 

[Merida]

@ScreamingBuddha
Yes, I had the same experience in my early Upper Cervical work. No soft tissue work, and my neck would go out as I left the parking lot. Then I found a great sacroiliac-occipital chiro who restored my sleep, helped in amazing ways. But this was scary at times - could leave office disoriented and not well. But, it made a huge difference over time. Now, he just can't adjust my neck at all without precipitating problems. Maybe soft tissue adhesions??? Just don't know.

Yes, waking up is just awful for me, too. I get waves of hot flashes. Then when I am up and drinking liquids I feel better. Think getting upright helps reduce the intracranial pressure that has built up during the night. I tried Diamox, but it made me sick. Read Dr. Diana Driscoll's post on this. Important. Her family was helped.

A test. hmmm. The test that showed my abnormal CSF flow was the MRI CINE study. But this really needs to be done by a neurosurgeon who is An expert. They put a clip on your finger during the MRI, not invasive. Yes, I think CSF flow is a huge issue. But there could be other aspects to this. Like how well is the brain blood venous drainage working. Go to this site to learn: The Downside of Upright Posture by Michael Flanagan, DC. He is a chiro with neuro training and has looked at skull structure and pressure issues for many years.

Maybe there is a good massage person nearby who can help with your neck. Check the John Barnes site. But i think Jerry Hesch in Colorado may be the best of the best. Look at his videos.

Also, if you have done kick boxing your pelvis/ sacrum relationship could very well be torqued. Appreciate that the whole dura-meningeal system is anchored in the sacrum, with attachments in the neck and occiput. So torque in the bottom causes twisting and torque in the top. Torque in the top affects CSF drainage from the brain.

Oh, I wish I could be of more help. May All that is Good and Strong and Beautiful guide you to healing.

 

[ScreamingBuddha]

@Merida
Thanks again. Excellent info.
And thanks for the encouraging words☺

So it sounds like things need to be addressed structurally and chemically..from what I gather.

I have heard of positive and negative Diamox experiences. What about something like Guanfacine in the "Intuniv" form? Its a mild hypertension drug with benefits for ADD'ERS with working memory issues. On that note...

Are there any common cognitive/mental symptoms people might experience with high CSF pressure? I deal with spells of depression/anxiety and some working memory issues. This part is frustrating.

With the cold weather (Canada)..spasms in neck and back result...and pressure in head seems worse. BP is 125/97 HR 76. And that's about 10 minutes after Yoga. So I have to do something here I believe. 126/92 ish when I feel "pressure" in head if I'm out and about. What's the connection between BP AND CSF pressure?

But you are so right about the night time stuff..the overheat...wonkiness...relieves by getting up and fluids. Thanks for validating that..I have really been baffled and anxious about this for a couple years now. So you are helping!

Thank you,

SB

 

[Wayne]

The problem arises - what on Earth can be done to help symptoms other than surgery?

Hi Merida,

I made A POST over on ProHealth back in 2008. Thought I'd re-post it (below) in case you've not heard of Bio Cranial therapy. There's a pretty good followup discussion on that thread.

Posted on ProHealth April 1, 2008

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, After 9 Long Years – Wife is Cured of Fibromyalgia Pain (A Husband’s Story) 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 wrote, and posted on his website, a 15-page article entitled “How to Get Better...Really Better...with the Head to Foot Approach”. If you choose not to read the whole article, you may want to consider 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.

Best Regards, Wayne​

 

[Wayne]

I've found the following to be remarkably helpful for relieving neck pain...

Toe Twirling Technique:

Hold your left foot steady with your left hand, take hold of your left big toe with your right hand, and then twirl it. Slowly and methodically. You will likely hear and feel various kinds cracking as tension begins to release in the area. I would do it for at least 2-3 minutes, then go to the other foot.

I did this once for an ongoing very stiff neck that showed no signs of letting up, even after ten days. After twirling the big toe on each foot for 10-15 minutes one night, my stiff neck was 90% improved when I woke up the next morning. To this day, I twirl each big toe in the morning for about a minute as part of my energetic exercise routine.

 

[Merida]

@Wayne
Thanks for these important and helpful comments. I have tried several Atlas methods - including atlas orthogonal. This latter technique uses X-rays of the Atlas, then an adjusting machine to position the Atlas correctly. Tried this 2 years ago, but didn't help further. But could be good for someone who has had no Atlas work. Have not tried Atlas Profilax as such.

Big toe rotation. Wow! I have huge bunions and have often thought they are an indicator of pelvic and/or neck imbalances.

What I came to appreciate is that the Atlas and occiput skull bone must be in sync - the foramen magnum in the occiput must line up with the central canal ( hole) in the Atlas for good CSF drainage. The line up of C2, C3 etc is also important because CSF draining downward can have backflow from poor C2/ C3 alignment. The occiput and sacrum motions reciprocate with each other. ( Brilliant work of the Sacroiliac-Occipital chiro and osteopaths) So, this can be a whole body issue - especially for women and wider pelvises and people with even mild scoliosis.

Also, the vertebral arteries thread thru holes in the sides of the neck vertebrae. So, rotation of these vertebrae can directly affect blood flow to ( and drainage from? ) the brain. I have about the only in depth text book on scoliosis, Scoliosis and Spinal Pain Syndrome, by Prof. of Orthopedics at Odessa Univ, Dr. Valentyn Serdyuk. He has detailed info on the many structural issues that can be associated with scoliosis. He says that the most significant and common anomalies are small holes in the cervical vertebrae through which the vertebral arteries to the brain. This affects blood flow to the brain.

And yes, the pituitary is surrounded by the durameningeal membranes and sits in a little notch in the sphenoid bone ( a vertical bone behind the eyes) . AND the sphenoid bone movement ( which is thought to stimulate the pituitary function) is influenced by the occiput movement. There is direct reciprocation between the sphenoid and coccyx bones.
( (source: The Anatomy and Physiology of Sacro-Occiptal Technique by Jonathan Howatt, DC, DICS)

So, I sit here in the wilderness calling out, " Someone please look closely at our structure. It could be a foundational issue that affects immune, hormonal, and central nervous system function."

 

[Wayne]

So, I sit here in the wilderness calling out, " Someone please look closely at our structure. It could be a foundational issue that affects immune, hormonal, and central nervous system function."

Hi Merida,

I'm really appreciating reading about so much of what you've learned over the years about structural issues. Wanted to mention there's a VERY interesting thread discussion going on over at PR at the moment. It's entitled,

Have you ruled out Chiari as a cause of your CFS

There's a number of very interesting posts there by a man (doesn't have Chiari) who's scheduled for surgery on January 31. Here's the gist of what he's looking at from these comments... (from THIS POST).

At any rate, my craniocervical problem is entirely correctable with neurosurgery. I'm scheduled for surgery at the end of the month. But for now, I'm in a halo vest that's keeping my head from sinking onto my spine. -- In the halo, I no longer have POTS. I no longer have PEM. My ME/CFS might have been, all along, a neurosurgical/structural problem.​

 

[Merida]

@Wayne
Thanks! Will check in there. I have been to 2 Chiari national conferences. Even the very experienced neurosurgeons admit that surgery is helpful in about 50 per cent of the surgeries that are done. Think they are working on how to determine who will benefit and who will not.

And, some experts discuss the fact that there can be various anomalies in that critical area at the craniocervical junction. So, surgery must be tailored to the individual.

And then there is the issue of tethered spinal cord and how that downward tension may affect the brainstem area. Whew. I just don't know.

 

[Merida]

Everyone should read Jeff_W experience in Phoenix Rising - Wayne gives the link above. So important. Jeff also thinks that we have trouble clearing viruses due to ( ultimately) structural issues at the craniocervical junction. Yes. Think we have all been chasing the "individual trees in the forest." Wow.

 

[7Susie]

Well, isn't that amazing that you had a similar experience?
I would like to propose something -- what are your thoughts?
Diamox (when properly prescribed) could be used as an inexpensive, low-risk diagnostic procedure. Rather than undergo a procedure with some risk (and maybe pain) and expense, could a positive response to Diamox be diagnostic in itself?

Another reason this may be important, is that many people have undiagnosed connective tissue problems (some are hypermobile, some have a diagnosis of EDS, most are never diagnosed) are more prone to spontaneous spinal leaks and poor healing of the LP site (sometimes opening up even years later). This leaking, even when patched, can continue and can be a source of disability in and of itself.

I think it is time for a more conservative approach.
Cort, is your intracranial pressure under control now? For many of us, this increase in ICP is temporary. In that light, I would encourage others to reconsider having a brain shunt, or as many of us do -- having neck fusions/ Chiari surgery when no Chiari is present until the doctors have exhausted more conservative approaches. Sound crazy? These procedures are common place in the hypermobile (EDS) chronic fatigue folks. Yeeks.
OK, staying with a black font!

Hi everyone...i'm new here and just recovering from 4years of constant "Migraines". It got worse with every day and i was googling/researching like crazy for a solution...Doctors always asked a million of questions about all the pain, it's exact location, intensity, triggers etc, and about auras and stuff, but it never seemed to lead anywhere for me. But at some point last year i started wondering why Docs always make such a hughe difference between Migraines and the symptoms of elevated intracranial pressure since symptoms on both seemed so similar to me...so i started researching on ICP. By chance i came across a nurses blog, where they exchanged knowledge on how to treat increased ICP in brain trauma patients. Most agents named there are administered iv (like Mannitol f.e.), so this wasn't an option for me. But one nurse (fhs!!!) mentioned Osmotherapy with Glycerine 98% (administered orally). Since i had Glycerine on my kitchen shelf and just was going through another hell of pain that day, i decided to take the risk and just tried it. One teaspoon of Glycerine 98% with some water....and guess what: Within minutes i felt something strange happening around my neck...it was a feeling as if someone would suck away all that pressure and pain...like standing in beachwaves which would suck away the sand beneath your feet...very strange feeling, but it felt totally liberating. Within 10min my "Migraine" was gone, my visual disturbances....just gone...neck and shoulder pain....gone gone gone!!! To be honest: i started to wheep since it was clear evidence i never suffered from any mystical "Migraines", but just plain old elevated ICP for years and the "wonder-drug" i was looking for sat on my kitchenshelf within reach all that time. This happened in Oct last year. I marked that day as my new birthday and am living on Glycerine 98% almost daily ever since. I just thought i should get that info out here for those who would not tolerate or couldn't get a prescription for Acetazolamide ( i'm starting to test it with Glaupax next week since i finally found a Neurologist who aknowleged my "Selfdiagnosis" and was willing to prescibe it for me). A big shoutout for all you people out there in these forums who are willing to make the effort to share your experiences since it might save someones life. Keep posting and all the best wishes from Munich/Germany, Susie

 

[Merida]

Susie,
Your comment is so very much appreciated ! I have glycerin here now - use it along with Dawn dish soap to make the most fantastic bubble solution ever for the grandkids - who are in awe of Grandma's bubbles.

I have been writing about structural issues as a source of symptoms for years !! And ultimately - yes, think the structural issues cause high intracranial pressure. Demonstrated to me by a ( wonderful ) neurosurgeon with a CINE MRI flow study. Not borderline - dramatic jets of spinal fluid in upper cervical canal and low flow around one side of the cerebellum.

I have written to so many researchers, but very few pick up on the critical importance of structure - that scoliosis is risk factor. Dr. Hulens ( Belgium) is an exception, and is writing now about high intracranial pressure. And of course, Dr. Diana Driscoll - wonderful information.

There is an incredible, and important book, Chiropractic : The Anatomy and Physiology of SacroOccipital Technique by Jonathan Howat, DC. DICS, etc. This is a detailed understanding of how the WHOLE central nervous system interfaces with the musculoskeletal system to have normal CNS function. You could find this at the SORSI site - I think. I worked with the sacrooccipital chiropractor who wrote the foreword, Dr. C. Curtis Buddingh. He got me functioning again - though still many symptoms due to small posterior fossa, short clivus, other structural issues of the lower skull. Check out Conquer Chiari - they are now writing about the morphometric research into the skull base. But - there is more - they must look at the pelvis and how the filum terminale is attached inside the sacral canal. Years ago, the neurosurgical team at Univ. of Alabama, Tubbs/ Oakes, published that 3 out of 27normal cadavers had a filum that is fused off the midline. Wow. So, the whole dural tube is asymmetric ??? Can it develop a torque that is a problem for spinal fluid drainage and return to the brain ??

The expert on helping restore better alignment for us 'glitchy ' people may be Jerry Hesch, doctorate of physical therapy, Colorado. Brilliant person.

Thank you for inspiring me to revisit this whole mess. My son ( age 39) is starting a lot of symptoms - hearing distortion in one ear, very sensitive stomach/ with pain, and now urinary frequency. Some fatigue, as well.

The way I see it, research needs to look carefully at the great research of the osteopaths and craniosacral chiropractors. Begin to develop technology to tract spinal fluid flow in the entire system. Families at risk should be identified - births in these families should be assisted with great care - think sometimes the craniocervical problem begins there. Anyway - please keep checking in and writing more. Hugs across the Atlantic.