Strange 'Atypical' Symptoms - Any Idea What's Going On?

[Cort]

A little history - mine goes back 4 generations, that we know of. My grandmother we are quit certain had POTS and EDS. My mom had EDS and MCAS. My sister has severe CFS and is in most all the research studies that are in progress, right now. She also has severe OI (orthostatic intolerance) to the point of her heart stopping on her tilt table test - 3 minutes into the test. Her kids have EDS, MCAS, and POTS. I have all three of those things and many autoimmune problems - including hypogamaglobulinemia. So you see it can run in families. And like you, my sister had anorexia. Our family has been asked to be in the genetic study that is going on for CFS. The boys are not yet old enough for consent and so far, we don't have approval for them to be accepted yet.

There also are methylation issues involved in our family. MTHFR and other mutations involved in this process. This would be worth taking a look at. Treatment fory mutations have helped me alot. This was also a family issue. The child born before me had spina bifida. A sign of Folate methylation dysfunction.

If we stand you will see us dance. We move around, sway and just generally can't stand still. We have to keep our blood moving while upright. You may see us fidget while sitting too. The leg shake, tapping feet, fidget. Again, us compensating for blood flow issues.

I feel there is also issues with low testosterone for guys. Many of us POTS girls have had endometrosis and that is thought to be an estrogen dominent issue. (Has the balance between testosterone to estrogen been checked?)



Issie

Issie your family is sooo interesting. I've gotta think they are a gold mine for researchers.

I definitely dance around when I stand...I NEVER stand still - always moving. When I talk on the phone when I'm standing I have to walk around. I think I'm trying to get blood to my brain...

It's amazing how complex all this is...

 

[Wayne]

Oh Heck! The above got posted before I was finished! So I'll continue in another post that I will hopefully finish today!

Hi Kelly (and Kim),

If this happens again, just click on the "edit" link at the bottom-left of your post, and you can go back and continue. Great posts BTW!

 

[Wayne]

My father now has Myasthenia Gravis - another horrible illness that is utterly debilitating - and he is finding it harder as he is my mothers prime carer.

Hi @DDawn,

Just a few brief thoughts at this time. A number of things you mention indicate pretty significant thyroid issues. I would encourage you to consider learning more about iodine therapy, and possibly supplementing with it.

Regarding Myasthenia Gravis, I'll just mention that after I started on iodine late last year, one of the first things I noticed was noticeably improved muscle strength. I've thought those improvements might be due to iodine's ability to coat certain proteins that often initiate autoimmune reactions.

There's much to learn about iodine, and its role in so many different conditions. Importantly, every single hormone our body makes is dependent on sufficient iodine availability. Unfortunately, almost everybody is iodine deficient--many severely so. I started a thread on iodine recently, which is located at this LINK.

All the Best, Wayne

 

[Issie]

Issie your family is sooo interesting. I've gotta think they are a gold mine for researchers.

I definitely dance around when I stand...I NEVER stand still - always moving. When I talk on the phone when I'm standing I have to walk around. I think I'm trying to get blood to my brain...

It's amazing how complex all this is...

Yeah Cort. We are all getting in the research reports. Very complex indeed.

Maybe Mayo AZ to see Dr Brent Goodman, my dysautonomia doc, would be in order for you Cort. May tell alot.

Issie

 

[sue la-la]

@DDawn, @Merida and @Issie
thanks for the intriguing medical histories. so many unsolved mysteries.

in addition to the genetic risk factors ... were any of the grandparents exposed to viral epidemics, such as poliomyelitis, or atypical poliomyelitis ?

when poliomyelitis travelled through a district, 99% of people had the virus pass through their gut, but only 10% developed symptoms (eg fever), only 1% had central nervous system involvement / paralysis. atypical polio was similar but not identical (ie paralysis was rare).

anecdotally, some families have had 2-3 generations affected by 'atypical polio' / ME.
anecdotally, some people with ME had parent/s or grandparent/s with polio or atypical polio.
it could be pure chance - or there may be a causal link.

(with my apologies for going off topic)

 

[Issie]

@DDawn, @Merida and @Issie
thanks for the intriguing medical histories. so many unsolved mysteries.

in addition to the genetic risk factors ... were any of the grandparents exposed to viral epidemics, such as poliomyelitis, or atypical poliomyelitis ?

when poliomyelitis travelled through a district, 99% of people had the virus pass through their gut, but only 10% developed symptoms (eg fever), only 1% had central nervous system involvement / paralysis. atypical polio was similar but not identical (ie paralysis was rare).

anecdotally, some families have had 2-3 generations affected by 'atypical polio' / ME.
anecdotally, some people with ME had parent/s or grandparent/s with polio or atypical polio.
it could be pure chance - or there may be a causal link.

As mentioned above in my post. I think a polio vaccine played a part in my sister, a friend and my spiral. We were so sick we couldn't walk or even lift our head off the pillow. We missed over 3 months of school. I was about 7 or 8 years old. And a boy, who was my best friend in first grade, died that summer having survived polio. He got leukemia.

Issie

 

[sue la-la]

As mentioned above in my post. I think a polio vaccine played a part in my sister, a friend and my spiral. We were so sick we couldn't walk or even lift our head off the pillow. We missed over 3 months of school. I was about 7 or 8 years old. And a boy, who was my best friend in first grade, died that summer having survived polio. He got leukemia.

Issie

thank you Issie - & my embarrassed apologies for missing that sentence

 

[Simas]

Be very very careful with carbs. People with these conditions and low carb diets don't go well. Here's a great article with references to other articles on why low carb diet may not be a good idea http://chriskresser.com/are-you-lower-carb-than-you-think/

It is especially bad if thyroid problems are suspected.

 

[Merida]

@Issie
Yes, so complex. Our stories are so important. Anecdotal, yes, but good observation is the foundation of good science. The more I get into this, I begin to think that the autonomic dysfunction is the primary producer of symptoms and distress for us. Took me 18 years to get clear diagnosis - from a neurosurgeon.

Good article( free, a quick search will bring it up) : JA Blackman MD et al. Paroxysmal autonomic instability after brain injury. Arch Neurol. 2004;61(3): 321-328. Although this article addresses the life threatening PAID, we seem to have constant, milder symptoms of this same phenomenon.

From article: " the pathophysiology of PAID can be best explained by dysfunction of autonomic centers in the diencephalon ( thalamus or hypothalamus) or their connections to cortical, subcortical, and brainstem loci that mediate autonomic function."

Hypoxia brain injury causes most cases, but hydrocephalus can also cause this autonomic dysfunction. The use of dopamine antagonists or withdrawal from dopamine agonists can also precipitate symptoms! Any spinal injury above T8 can cause autonomic issues. Apprehension is a symptom.

 

[Issie]

@Issie
Yes, so complex. Our stories are so important. Anecdotal, yes, but good observation is the foundation of good science. The more I get into this, I begin to think that the autonomic dysfunction is the primary producer of symptoms and distress for us. Took me 18 years to get clear diagnosis - from a neurosurgeon.

Good article( free, a quick search will bring it up) : JA Blackman MD et al. Paroxysmal autonomic instability after brain injury. Arch Neurol. 2004;61(3): 321-328. Although this article addresses the life threatening PAID, we seem to have constant, milder symptoms of this same phenomenon.

From article: " the pathophysiology of PAID can be best explained by dysfunction of autonomic centers in the diencephalon ( thalamus or hypothalamus) or their connections to cortical, subcortical, and brainstem loci that mediate autonomic function."

Hypoxia brain injury causes most cases, but hydrocephalus can also cause this autonomic dysfunction. The use of dopamine antagonists or withdrawal from dopamine agonists can also precipitate symptoms! Any spinal injury above T8 can cause autonomic issues. Apprehension is a symptom.

I explored hydrocephalus years ago and did the Diamox. In the end it was a diaster for me. I think the Diamox and baking soda contributed to my Chronic Kidney Disease. Was a very bad, long term consequence trial on my part.

I think the autonomic response is a compensation.

Issie

 

[ShyestofFlies]

I wonder given some of the symptoms, any possitive ANA, sjogrens antibodies, or tests for vascular eds to rule that out?

 

[Merida]

I do not do well on Diamox either, despite the fact that my CINE MRI ( with neurosurgeon) shows abnormal CSF flow in the lower brain and upper neck - right where the autonomic centers are. He told me that he often has to shunt people like me, if they choose a decompression surgery. I did not choose surgery. Too risky.

I have attended several Chiari conferences, talked with patients, neurosurgeons , etc. some people do great with surgery, others do not. They have been trying to predict who is a good surgical candidate.

@ShyestofFlies
Yes, I think the immune system thing is so important, too. But immune dysregulation may be another secondary issue to a primary issue of compression and poor CSF flow/ and or blood flow/ drainage in that critical lower brain/ upper neck area.

Observation: Been having dental work lately, with consequence of awful neck popping, tightness, pain, more headache. Also have had hives and this dermographic skin reaction on my back. As my neck improves, so does these quirky immune issues.

So, ?????

 

[Wayne]

abnormal CSF flow in the lower brain and upper neck - right where the autonomic centers are.

Hi @Merida,

That area is also a critical one for the cranial nerves, as that's where they exit the brainstem through the first cervical vertebra called the atlas. I had a relatively simple procedure done called Atlas Profilax which helped relieve pressure on some compressed cranial nerves. If you'would be interested in checking this out, I would point you in the direction of:

Dr. Brian Elijah, ND, DC who works in the Twin Cities ---- (952) 884-3700).

Atlas Prolilax practitioners are few and far between, and he's the only AP practitioner I know of who is also a licensed chiropractic physician. I've looked fairly extensively into Chiari myself, and now believe that researching Atlas Profilax first would likely be a better path to follow.

This LINK will take you to a thread on PR where I posted QUITE extensively on some of my own AP experiences.

Here's a blurb from Dr. Elijah's website:

AtlasPROfilax

We believe AtlasPROfilax is a key and foundational piece to your health. World renown, AtlasPROfilax is a unique, European technique that moves your atlas bone into its correct and natural position without multiple treatments, for nearly everyone.
The atlas bone is often referred to as C1 because it is the 1st bone in your cervical spine (neck). Its a vital part of your body because it is the gateway from your brain to your body. Your brain stem goes through the center of your atlas bone. Your vegus nerve, central nervous system, immune system and digestion are functioning better when your atlas is in its correct and natural position. Enjoy less pain, more energy, range of motion, flexibility, balance, better sleep and moods. Learn more about AtlasPROfilax.

 

[Merida]

@Wayne
Thanks so much for this info. I have done the NUCCA technique by an experienced chiro. I could feel symptoms change with every little movement of the atlas. And, my hips leveled out. However, I would lose part or all of the adjustment just by turning my head to leave the parking lot. Did this for 6 months. Yes, symptoms improved.

Finally I went to a sacro-occipital chiro who worked on the whole neck/ atlas/ pelvis. Made great progress. Was sleeping wonderfully at one point. Improved , but could not get past certain point. So unstable. Why? Think it is because my sacrum is unstable and I have a torque in my spine due to scoliosis.

Anyway, looking at the technique you mentioned. May have additional value. Thanks, again.

 

[Merida]

@Wayne
Read and read at Phoenix Rising. Great discussion. I think that the bottom line structural issue is scoliosis ( even mild) with possible tight filum terminale attachment in the sacrum. ( or possible off midline fusion of filum and dura - research by neurosurgeons Hansasuta/Tubbs/ Oakes - 3 out of 27 normal cadavers had this.)

Small hole in the skull / occiput - yes! The space inside my lower skull was measured by neurosurgeon according to Chiari protocol ( ie Chiari Institute). I have a small space, and a short clivus bone. Also, small holes in the sacrum. So much to thus.

Cranial nerve issues - yes!! And remember all these nerves must pass through the dura. So any torques or restrictions in the dura or how it us attached can create pressure on the nerves. Restrictions in the boney structures can do the same.

An important book : Scoliosis and Spinal Pain Syndrome by Professor Dr. Valentyn Serdyuk - orthopedic surgeon. He details all the odd bone structures seen in scoliosis patients. ( I gave cervical ribs, vertebral cleft, vertebral hemangiomas) The most important finding though is small holes in the cervical vertebrae where the vertebral arteries pass through - and they also travel through the opening in the skull base.

He has simple de torsion movements that he says helps tremendously. Plus, the short leg must be leveled with orthotic. Also, has some electromagnetic thing for the neck.

Thus is all so important, but virtually no one has had an in depth look at structure. I spent thousands trying to find answers. I agree about the esoteric side. Have experienced this stuff. Keep wondering if scoliosis allows certain chakras to open ? Why is it even in the gene pool????? Check out The Downside of Upright Posture by Michael Flanagan, DC - neurological chiro who spent whole life studying physical anthro looking at CSF/ blood flow to/ from brain.

Thanks again. Hope I don't sound like a broken record.

 

[Wayne]

Thus is all so important, but virtually no one has had an in depth look at structure. I spent thousands trying to find answers. I agree about the esoteric side. Have experienced this stuff. Keep wondering if scoliosis allows certain chakras to open ? Why is it even in the gene pool????? Check out The Downside of Upright Posture by Michael Flanagan, DC - neurological chiro who spent whole life studying physical anthro looking at CSF/ blood flow to/ from brain.

Hi again @Merida,

I'm looking forward to checking out some of the things you mentioned in your post. It seems apparent you know a lot of technical detail stuff (more than me), which would probably make Dr. ELijah a good person for you to talk to if you decide to follow up at all on the AP.

What I know for myself--without knowing why--is that I deal with a chronic sense of discombobulation. I believe much of it results from ongoing dysfunction around my head, brain, neck, spinal column, etc. To counter some of these effects, I do various kinds of energetic and polarity exercises. Below are links to one of my favorite techniques--one that reliably brings at least a temporary sense of homeostasis...

The Cortices Technique with Dr. John Veltheim

Balance Your Brain with BodyTalk: The Cortices Technique

 

[Merida]

Thanks again for this interesting info. Reading more. I actually did Body Talk years ago. Interesting practitioner. She was Chiropractor ( and a little more!) and told me there was a metabolic problem involving succinate, which is a substance that is in Complex II in the mitochondria that involves an electron transport pathway. Pretty crazy. Have never confirmed this. A few other weird/ interesting things happened there. I was doing better then, so ... ?She retired.
I certainly appreciate the specific reference - Dr. Elijah. Yes, would like to talk to him. I found a practitioner here in L.A., so that is another possibility. I asked my acupuncturist ( was orthopedic surgeon in China - did neck surgeries for 10 years - not happy with surgical results and went back to ancient Chinese healing) to please put my atlas in today. And wow I feel better - at least for a while- but nothing close to normal - whatever that is.

It would be really great if researchers came up with a pill or two or three that 'cured 'us. But I do not see that happening. Thanks again.

 

[Merida]

@Wayne
Go to Media and look at the posted photos " Cranio-Sacral Forces." Victor and I have chatted there. The photos are of SacroOcciptal chiropractic pamphlets showing the progressive body distortions that are associated with an unstable sacrum/ atlas/ cranial bones. I have the important volume on this, "Chiropractic: The Anatomy and Physiology of SacroOccipital Technique" by Jonathan Howat, DC, DICS, etc.

When I first saw these pamphlets at my chiro's office, I thought that this was ridiculous. Then I started looking closely at my own structure, ordered the big book. Brilliant stuff. And all I had been through began to make some sense. The atlas is so very important , but only one part of the total picture.

Some one needs to explain why women comprise 70 to 80 percent of the fibro/ CFS patients. I think th answer is in the wider, more unstable sacrum and pelvis - which throws the atlas/ occiput relationship off and causes scoliosis? However, my son has CFS too. Why ?? He was a big baby and was delivered with suction on his head. Think that affected the upper neck. Long story.

Such a long journey.

 

[Wayne]

Hi @Merida

You sound like you're quite a voracious reader. I found this particular story quite fascinating--perhaps you will too...

After 9 Long Years - Wife is Cured of Fibromyalgia Pain (A Husband's Story)

P.S. I'm a bit concerned we may be hijacking this thread. Wondering if we should start another thread, which might focus on structural issues (a top interest of mine). What do you think?

 

[Merida]

Thanks, again. Didn't know about hijacking yes, there are structure and function discussions somewhere, but I have trouble relocating them. Understanding something about the craniosacral dynamics and dural attachment/ function can begin to explain the multitude of weird symptoms.