jangle

I've been taking in about 2 table spoons of salt a day, (about 5-7 grams of sodium). I'm worried if this can cause hypernatremia.

How much sodium do you take in a day and what are your sodium levels usually on the blood tests?

Sorry I'm being a little bit of a hypochondriac today because I've been getting worrisome symptoms.

My doctor didn't talk at all about my salt intake while on florinef. I'm currently taking .1 mg, I was wondering if it's dangerous for me to increase my salt intake on this medicine?

Just wanting to gauge long term prognosis with pots. Is there anyone on here who has had pots for 10 or more years. Has your condition gotten worse, stayed the same or improved? Have you noticed any other symptoms develop over the years or have you been stable?

Dani have you tried Florinef? It's helped my lightheadedness as well and I think by increasing my blood volume similar to what saline would do.

I agree, you need to get accommodations and I would just see this incident as a step back rather than a blockade. There's no way they can overlook the severe symptoms associated with POTS.

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The reason I started my ANA thread a while ago was I was trying to see if there was some sort of consistent autoimmune condition in us.

From the informal survey it seemed the majority had a speckled ANA pattern, although some were negative and some had different patterns.

Perhaps there's a specific auto-antibody that targets our autonomic nervous system. They find it, find a cure for it, badda bing badda boom we're cured!

Sadly they can only read the same studies we're reading. There's just not enough answers.

It is reasonable to expect they read what's out there, but for reasons mentioned before they just don't.

We can figure this out though. I have faith in us! The way I've learned how to deal with experimental medicine when you don't have studies that cover exactly what's going on you look for analogous conditions and try to make logical inferences to your own condition. This can actually be quite effective.

I do hope it helps! my only concern is with other metals like mercury and lead having toxic effects. Now magnesium is actually needed in the body, just like iron so I doubt it's going to be as toxic as mercury or lead. It's just you probably don't want it to get too too high. I guess it's like everything else, heck even water can be dangerous in excessive amounts.

I honestly believe that POTS is predominately caused by an autoimmune reaction. The reason I say this is based off of indirect evidence namely the fact that our symptoms improve at night. It is well known that light sources can intensify autoimmune diseases. Therefore it seems reasonable that our symptoms would go down at night time when our auto immune reaction is slightly less.

I'm sorry . . . .WHAT???? Can you explain this a little better.

Issie

Certainly!

I read a study that showed people with POTS are worse in the morning and better off at night.

http://www.ncbi.nlm....pubmed/21751966

I feel much better now than I did this morning.

I can't remember where I read about sunlight and autoimmune disorders. I do remember that sunlight can bring on autoimmune symptoms in certain conditions.

Because POTS also is made worse in daylight hours I speculate that this is happening because it is being caused by one of the autoimmune disorders that's sensitive to daylight.

EDIT: rama also listed trends that suggest autoimmune as well.

All these things taken together strongly suggest an autoimmune involvement.

I honestly believe that POTS is predominately caused by an autoimmune reaction. The reason I say this is based off of indirect evidence namely the fact that our symptoms improve at night. It is well known that light sources can intensify autoimmune diseases. Therefore it seems reasonable that our symptoms would go down at night time when our auto immune reaction is slightly less.

I don't want to sound like an old stick in the mud but metals tend to have a bad track record in the central nervous system. It is possible to grow new neurons in the brain through a process known as neurogenesis. A dose response relationship exists with aerobic exercise, where people who walked an hour 3 times a week for a year grew their hippocampal volume by 2%. Projecting further, if I you jog and take mercury free fish oil supplements you can probably expect 4-6% growth. New neurons are also thought to be more effective than old ones because they haven't been exposed to oxidative damage and other poisons from the environment.

Corina have you been tested for sleep apnea? A lot of people with dysautonomia suffer from that which can cause brain fog.

I looked it up on wikipedia and the critical closing pressure is the pressure that once reached results in the blood vessel being closed. So for normal people their blood vessels are closing which I guess improves blood flow.

I sent you a private message rdl

Im sorry actually I don't know either, im guessing they probably describe it in their discussion but they've only released their abstract for free. Ill look to see if I can look it up.

I guess the important question is is there a treatment for the cpp?

Basically the cerebral blood flow was similar between both study groups (the control and the CFS + POTS patients) however, the control group's critical closing pressure decreased as they were made to "stand up" which allowed for their neuronal circuits to become activated. In contrast, the CFS + POTS patients' critical closing pressure remained the same when they were "standing up" versus lying down, suggesting a defect in their compensatory mechanism.

How their cerebral blood flow remained fairly consistent despite the critical closing pressure malfunctioning is a mystery to me. Perhaps there's another compensatory mechanism at play.

I haven't really dealt with brain fog as I think others are alluding to. I can still think and function cognitively like I used to, but I do notice I've lost interest in things I used to be interested in. It's difficult to be motivated to think about anything when you're in pain. Therefore I find my mind blank most of the time, but when I do get motivated to think about things I'm generally ok. In the past I have noticed difficulty with losing my train of thought (when I was standing or sitting down) like I would have a stream of thoughts and then I would forget what I was thinking about and couldn't retrieve it. Also my working memory (things that happened a few seconds ago) seemed to be impaired. This persists still to some extent but it's not as bad as it used to be.

Interesting topic. My son is 16. He goes to school part time but this fall his brainfog became so progressively worse that daily he was having trouble understanding the simplest of directions. He said it was like someone speaking a foriegn language. Plus he couldn't form words or thoughts. In addition he sometimes gets "loopy" or giddy. Thank goodness I have already warned the school that he may act intoxicated because to someone who doesn't know that is how he appears. He has had to endure some bullying as a result and things became desperate. At that point we pursued some medical relief. Beverly Karabin had suggested some medications to discuss with his primary care doc. She prescribed Focalin XR which is similiar to Ritalin. The difference for him has been nothing short of miraculous. He can focus, is clear thinking, is back to being able to progess through his algebra. It lasts about 12 hours and we can tell when it wears off. We really hated to add yet another medication but so far (and it has only been since Christmas) this has been a success. He is on the lowest dose.

Jangle, t

he cerebral hypoperfusion certainly explains some of his symptoms and when the giddy symptoms occur laying flat on his back, feet up, definately helps in about 20 minutes to an hour, but doesn't help a lot with the more generalized brain fog as it occures during times when he has spent times sitting in a recliner with feet elevated or even laying flat. Would the reduction of neurogenesis be an influence here. His brain fog is severe, yet the Focalin clears it. I don't think the Focalin is acting significantly on his circulation or blood pressure.

Elfie,

here is a link to a publication by Dr. Grubb you could copy to take to your Dr. where it describes using these type of meds (ritalin, etc...) in patients for pots. The list of meds is on page 4 I believe. You could try it. I think you would know very quickly whether it would help or not.

http://circ.ahajourn...4.full.pdf+html

I'm not entirely certain what's going on, I'm just forming a hypothesis from what I know. I do know however, that ritalin is actually considered very successful in treating POTS, perhaps through some unknown mechanism (though some speculate that it works through its vasoconstrictive properties.) if Focalin is a lot like Ritalin then perhaps it also is working through this mechanism.

I do know that reduced neurogenesis in the hippocampus is now seriously being considered as the primary etiology of depression. With depression there can be all sorts of cognitive dysfunction ranging from brain fog to stupor.

It would make sense that if we do suffer from reduced cerebral perfusion then that would have a direct impact on the survivability of neurons growing in the hippocampus and could through that mechanism produce depression and cognitive disturbances.

Luckily we can regrow neurons in the hippocampus through the mechanisms I listed above.

Also if his POTS is being caused by hypovolemia (reduced blood volume) then it could also be possible to still have brain fog from reduced perfusion while lying down (although it should be a little bit less).

Targs66 the sensitivity for brain mris in multiple sclerosis is something like 95% and the other 5% are probably moreso the primary progressive type that typically present with motor symptoms initially. Anyway I don't think you have to worry about MS.

hi Jangle - thanks for your answer - I'm a little confused by what you mean when you say the sensitivity for brain mri's in ms is something like 95% - do you mean that the detection is 95% accurate? Can you clarify a bit? thanks!!

Sure, 95% sensitivity means 95% of patients with multiple sclerosis will present with the characteristic brain lesions on the MRI.

No my doctors don't seem to care to investigate why im experiencing the sensory nerve damage because my legs checked out to be relatively normal and in their view all the progressive forms of peripheral neuropathy begin in the feet. Therefore they said it's probably just carpel tunnel. But this past month I've noticed it has gotten worse and my legs are starting to feel it.

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Targs66 the sensitivity for brain mris in multiple sclerosis is something like 95% and the other 5% are probably moreso the primary progressive type that typically present with motor symptoms initially.

I never would have thought diet could have a significant impact on much of anything until I learned about celiac disease and how going glutton free actually made a difference for some people. Hopefully you can find something that alleviates your symptoms. I would suggest adding fish oil for further autoimmune suppression as well as anti-inflammatory.

I think there might be something to it. Maybe we can stabilize if we can get our parasympathetic system working again. So perhaps not focusing on reducing our sympathetic system as some drugs do but rather augmenting the parasympathetic.

Dani thanks for the suggestion. Unfortunately I don't tolerate ssris very well .