Head/neck possible contributor to POTS

[sue1234]

I read an article last week that really got me to thinking about POTS. It was this:

http://www.npr.org/blogs/thesalt/2012/02/23/147294191/why-astronauts-crave-tabasco-sauce?sc=tw&ft=1&f=1001

First off, when I say “we”, I am NOT applying this theory to everyone here. I use the term loosely in referring to this health issue that brings us all here and anyone who can relate to my POTS issues.

Of course, anytime I see “astronauts” mentioned with any kind of health topic, I focus in as we seem to have the same issue as them. In this article it says that astronauts in space crave spicy foods because they lose the ability to smell. They speculate this happens because without gravity, they tend to have more fluids in their head.

This got me to really thinking(okay, I know *roll eyes*). If astronauts get increased pressure in their heads, and they come back to Earth with orthostatic intolerance, could it be that the increased pressure in their head maybe falsely tells the baroreceptor system in the head that there is too much fluid and/or pressure? This could cause a cascade effect of possibly altering the renin/aldosterone system to make it lower so the body loses fluid. Also, I’m wondering if it could lower the ADH, causing fluid loss. IF this would happen, it would be fine while they are in a no-gravity situation, but when they come back to Earth, they might have a new low blood volume. BUT, THEIR systems are NORMAL, so once back on Earth, their bodies probably quickly build up their volumes by hormone re-adjustment. They did not mention anything in the article about astronauts and their orthostatic issues, but my brain got to thinking about the possibilities.

So, how this relates to us. I know a lot of us have neck issues. A lot have chronic headaches and/or head pressure. From the beginning I have had the feeling like someone blew up a balloon in my head. I have scoliosis plus bad posture. A lot of EDSers here I would assume might have all this. I have cervical stenosis, as some others here have. A few on here have been diagnosed with Chiari. What if we, due to actual mechanical reasons, have a problem with either our blood draining correctly out of the brain(causing pressure) or have a problem with cerebrospinal fluid correctly flowing(causing pressure)? This could cause our body to falsely think it has too much fluid, so it does what it can to get rid of it. In doing this, the head pressure is minimized but not gone. This leaves the body in a chronically fluid volume-deprived state, and only made worse when standing. The head thinks there’s enough fluid, but the body KNOWS there is not enough according to the heart, so out goes the adrenaline. The adrenaline would worsen the pressure in the head(possibly), and just repeat, day after day.

If you look up Chiari, you’ll see that it affects various cranial nerves. I’ve had my share of issues with cranial nerve problems, and some are getting worse. What really made me REALLY think of this or something like this is, last week I was reclining in my chair with my arms behind my head. I got up to go to the kitchen and my vision was really blurry for a good 15 minutes. I also have blurry vision when I first get up in the morning. I always wondered if lying down all night caused too much pressure in my head, but the recliner thing kind of really brought that to light. I also have have a droopy left mouth in the mornings, and two years ago my neuro said that is not normal(I had told him I thought it was from getting 50ish).

I think of Chiari or cervical stenosis or something similar that affects everything we always complain about: dizziness, headaches, neck pain, limb pain, gait problems, light sensitivity, cognitive issues, and LOTS more. I’d love for anyone’s input into this. Remember, a lot of us have said we either have neck issues, or have been in an accident, or I was thinking about how a lot on here have said how athletic they were right before getting POTS. What if your lax joints finally shifted due to the movement of jogging, etc.? I don’t know, lots of questions and lots to think about.

[julieph85]

That's so interesting sue and really thought out. I feel really bad for those volunteers though. I hope they don't come out of that with orthostatic intolerance. Laying in bed for weeks in the head down position is what triggered my pots! I'm thinking maybe they are craving the capsaicin in the spicy foods. It is an antagonist of several vasoactive peptides in the body. I'm wondering if it has nothing to do with the loss of smell but instead with the activation of RAS brought on by the fluid shift

[ramakentesh]

All I know is that they think astronaut orthostatic intolerance is cause by excessive nitric oxide formation in the blood although Ben Levine thinks it is deconditioning.

[sue1234]

It is still a mystery. But, I was thinking how we were talking lately how pretty much everyone still had symptoms sitting. To me some of the symptoms seem to go beyond the ANS. For instance, I have the droopy mouth thing, others have continuous headaches, some have mentioned in the past about an occasional droopy eyelid when they are tired. Some of us have nystagmus(jerky eye movements), visual floaters and other odd vision things, facial pain, teeth pain, ear ringing. People talk about their body pain and numb limbs. We are lightheaded/dizzy even while sitting! How many of us have been checked for Meniere's because we seem off balance? I've been through the Epley(?) movements, but they didn't change anything. I could go on with more symptoms. These are all things that can tie into the cranial nerves. I don't know, but the more I read what people with Chiari and/or cervical stenosis say about their symptoms, the more I see how we have similar symptoms.

BTW, I hate hot flushes!! (said while fanning myself)

[ramakentesh]

You know, some research is suggesting that what causes the dizziness in POTS is actually sometimes the very thing our body does to compensate for low stroke volume - parasympathetic withdrawal which may effect cerebral autoregulation and blood pressure buffering of the brain.

[sue1234]

You can read about cervical stenosis here:

http://www.wichiaricenter.org/oth/Page.asp?PageID=OTH000030

If you read the Symptoms part about myelopathy, it talks about alot of issues we have. It mentions that this and Chiari can have almost identical symptoms.

Another interesting thing is these MRIs. The two side-by-side that show the stenosis in a normal position, and then the stenosis "opens up" when the neck is flexed sounds just like my situation. For the last few years I have preferred "slumping" when sitting, because if I have to sit long straight up, I get POTS symptoms while sitting. I guess when I slump, my neck is actually flexed at all times. Even now when I walk, I find myself just looking at the ground, as my vision is weird if I pick my head up and look straight ahead. Here's the pictures on the chiari site:

http://www.wichiaricenter.org/oth/Page.asp?PageID=OTH000038

[roxie]

I don't know. I know I do not have a chiairi

My neck does hurt a lot though. When I tilt my head back I feel like my head is going to fall off or my neck is going to crack. I'm not sure what it means?

[julieph85]

I also have severe neck pain and slump all the time. I know I do not have Chiari malformation but I have RA so it is possible there is something wrong with my neck. It cracks real bad.

[Chaos]

I don't have cervical stenosis but don't know about chiari. I've always worked hard on my posture so don't slump too much. Do have tons of cracking in my neck, but have that in all my other joints as well.

[sue1234]

I thought this might interest the EDSers. It shows that at the Chiari Institute, 1 out of every 15 patients has both Chiari and EDS.

http://www.conquerchiari.org/subs%20only/volume%204/issue%204(10)/bland%20connective%20tissue%204(10).asp

I don't have EDS, but I do have a bone disorder that has affected my joints and that has caused scoliosis, kyphosis and now cervical stenosis (please, no more -osis conditions! LOL). I'm sure this has gotten my cranium off-balance and things cannot be flowing smoothly in and out.

[Katybug]

I do not have cervical stenosis but I have completely lost the curve to my cervical spine, so all the weight of my head comes straight down my spinal cord instead of being disseminated by the curve. When my neck is fatigued from this, I can feel my POTS symptoms worsen. I can not get manual chiropractic adjustments to my neck because it causes pre-syncope for me (I have had 2 different chiros try and fail at these adjs.) The immunologist thinks I have some sort of connective tissue disorder in addition to the inflammatory immune issues and said the loss of the curve in my neck fits into this dx. I certainly don't have any scientific proof, but, I have learned to listen closely to my body and I would absolutely argue that the postural deficiency in my neck contributes to my symptoms.

By the way, for anyone that gets a fatigued neck (like you feel you can't hold the weight of your head up anymore), my chiro had me put a roll of paper towels in my car, so when I need it, I put the roll behind my neck and it is amazng how much pressure it relieves from your spine. You can also roll a bath towel into a roll and put rubberbands around it to achieve the same thing, and, can o this in the house too if you have a high backed chair.

[L4UR3N]

This is such an interesting topic and observation Sue! It also goes along with the Driscoll theory.

To my knowledge I do not have cervical stenosis, but I do have a lot of pain/pressure in my neck, and a lot of pain when trying to bend my head backward (eyedrops are torture to put in my eyes). Now I am going to review my MRI's to see if I can find any stenosis! I probably should just get a spinal X-ray, but I've been putting it off. I should also get a CXR soon to check for hypertrophy, but I keep telling myself that knowing wont change it, lol.

[L4UR3N]

I have never tried to post a picture on here, so I'm not sure if it is doable or not, but it would be cool for us to take pictures of our MRI's and post them to compare .

[issie]

Well, I have a 2mm drop of the cerabral tonsils into the cavity that they look at for Chairi - they don't consider it chairi until its a 3mm drop. But, my MRI was lying down and I do have EDS and wonder what happens when I'm upright. I have to keep my head and neck pretty straight all the time and can't turn my head to either side and leave it there for any length of time -because it will cause symptoms for me. I have to have my chair straight in line with the TV to watch it and not have to turn my head. Same with sleeping. So, there may be something to this as a problem. But, even though I questioned docs about it - they want the criteria to be totally met before they will even consider it as a possible contributing factor. Because of EDS, I also have severe osteo-arthritis and lots of bone spurs and changes through my whole spine. Not to mention allot of pain.

Issie

[L4UR3N]

The only thing that was noted as abnormal with my MRI is that my pituitary was shifted slightly left of midline with nothing to account for the shift (no tumor, etc). Since my microbiology teacher instilled in us "form = function" I do have to think it would affect the function in some way.

[sue1234]

Rissy, it would be interesting to put our MRIs up here. And, I was reading something the other day about the pituitary stalk being deviated, but for the life of me cannot remember what it was or where I read it.

Katy, I have read alot about people with Chiari having lost the curve in their neck.

Issie, I am EXACTLY the same regarding my neck. When my parents visit and sit on my couch to my left, I literally turn my recliner away from facing the tv to the couch. I also get POTsy if I have to look at people with my neck turned. The Chiari people talk about specific imaging called cine MRI that measure the flow through the brain with the hear beat. Sounds interesting, but I agree they need to get it in various positions.

[E246]

Good post. I too have a stiff neck that creaks and cracks and grinds. Like Issie and Sue i always face the person i am talking to - i can't bear having to twist it for too long. Also can't sleep on one side as it is too uncomfortable and have to sit slumping with head on pillow.

Amazing how many of us have this problem.

Waiting for mri to rule out chiari, but there doesn't seem to be much that can be done about it?

[julieph85]

I have a partial empty sella- which means my pituitary is being compressed with cerebrospinal fluid. Every doc says it is not relevant to my pots

[kmichaelson]

I have lost the curve in my neck like katy describes as well. I had an MRI of my neck and it showed a bulging disc, but the doctor said it wasn't affecting my spinal cord. Those of you who have been diagnosed with Chiari and stenosis, is it a pretty straightforward diagnosis or does it take some specialization to know to look for it? (I just wonder if it's something my doctor would have looked for on my MRI or not.)

[HopeSprings]

I have no curve either, degenerative disc disease, herniated discs, one of which pushes on the cord. Two neuro-surgeons looked at my MRI's and both felt my dysautonomia symptoms are unrelated. I've told this story before, but just in case ... the first time I ever felt tachycardia was directly after a chiropractic adjustment - things went downhill from there and over the next few weeks suddenly developed full blown autonomic symptoms. The timing may have been coincidental, but I'm not so sure. Could it be when we stand, pressure is being placed somewhere in the neck that's triggering symptoms? The first place I feel it in the morning is my neck and soon after my heart starts up.

[julieph85]

I have had unexplained neck pain for 6 years, when my pots flares it is way worse I don't feel like that's a coincidence

[bellgirl]

I have a small corpus callosum and kyphosis...The corpus callosum is where the left and right brain hemispheres' nervous system connects, the 200-250 million nerve fibers...Most people with small ones, actually have major deficiencies in the brain. Not to offend anyone in the least, but I find it rather funny, since I have always had a scientific and artistic side, using both hemispheres equally...lol...and a higher than average IQ, when my brain fog isn't overtaking me, that is ...Food for thought, Sue. What you are saying makes perfect sense to me!! Incidentally, my husband has no sense of smell since he hit his head as a child, and loves tobasco, in referring to the article about the astronauts you posted!!

[mully2014]

There has been a lot of information getting out about POTS with astronauts coming back and haivng fainint disorders. I think it is great that more awareness is being created but for me most it hasn't seemed to really apply to me and I don't know if it is because of the way that the condition was started for those people compared to us.

[Katybug]

I have had two MRIs in the last 4 years and no mention of a chiari malformation in the reports although I have often wondered silently if it's there and just being missed. I haven't really talked to the docs about an association between my autonomic dysfunction and the loss of my cervical curve. BUT, I really believe that it has to affect us. The basic concept of spinal cord injuries is to expect deficits/paralysis from the point of injury in the spine and below (i.e. if you injure your spinal cord near the bottom of your rib cage, you would be paralyzed/deficient from that point to your feet.) If we are having issues that affect any of the nerves in our necks, it would affect all of our major organ systems to some extent. It always amazes me how unwilling a lot of docs are to connect the dots. I am pretty sure (and have told him as much) that my chiropractor is the only reason I was able to keep working as long as I did. I would get to his office and be a wreck and his treatments would get me bac on my feet fr a coupe more days. He would take inventory of all of my symptoms and then make adjustments that targeted the areas/nerves that would cause those symptoms (using a device called an activator instead of manual adjustments because my body was so sensitive to the changes.) He would even make adjustments to the bones in my face to help my migraines and to the bones in my feet.

[HopeSprings]

The basic concept of spinal cord injuries is to expect deficits/paralysis from the point of injury in the spine and below (i.e. if you injure your spinal cord near the bottom of your rib cage, you would be paralyzed/deficient from that point to your feet.) If we are having issues that affect any of the nerves in our necks, it would affect all of our major organ systems to some extent. It always amazes me how unwilling a lot of docs are to connect the dots.

Totally agree and have questioned this myself many times. But where do we take this information - they seem unwilling to look at this.