Pots & Excitotoxicity

[Suthrngal]

Nutraeval said I had low B1.

[issie]

I really question the use of salt. You can look back on my post and find out why. It's one of my soap box subjects. It also causes problems with the immune system.

I have those upper body, shoulder spasms and in the neck thing too. I think part of the problem for me with that is Ehlers Danlos. I constrict my muscles to try to keep myself upright and held together and that causes the muscles to fatigue and then the cramping. That's just what I think - not sure if that is it or not.

Sounds like glutamate could be having a role in your symptoms. You can make sure that your diet isn't contributing to some of the problems and like some of us are doing - we are trying B-1 to see if it helps.

Issie

[issie]

I found this on another forum (Inspire) and the person who posted it name is Bellagunn. I want to make sure this person gets the credit for the information. Passing it along.

_________________________________________________

Mast cell disease is caused by mast cell activation, either by degranulation, growth or a combination of the two. There are many different mutations that can cause mast cell activation leading to mast cell disease.

AMast cells can be triggered to grow or degranulate through other mechanisms but the c-KIT activation is the primary malfunction implicated in mast cell disease.

[issie]

I've questioned if an imbalance in glutamate/GABA could be contributing to the tachycardia that we feel with POTS and maybe some of our symptoms. I found this article showing they are connecting it to that and also its affects with NO.

http://www.ncbi.nlm.nih.gov/pubmed/23735844

Issie

[issie]

http://www.ncbi.nlm.nih.gov/pubmed/23665166

Another article connecting glutamatergic activity to splanic nerve discharge.

Issie

[Darlene]

i was dx with dysautonomia in 2005. stimulants such as caffeine, aspartate from aspartame sweeteners, and glutamate from MSG send me to the ER. sometimes i get this systemic burning sensation throughout my body, i wonder if this could be from the excitatory neurons. i have anxiety and panic attacks (not mentally induced).
i was put on klonopin, but 1st link potluck posted says klonopin makes things worse. i wonder what i can do to calm my nervous system? the site also talks about low blood sugar. my dr. has checked this and it's ok, but when i get certain episodes i check my sugar and its low (60's). when my sugar gets below 72 i feel funny. so, how can my blood tests show i don't have diabetes but my glucose meter at home says other wise. my grandpa has sugar. so, it looks like i should quit klonopin (only took it once in a blue moon anyway) and quit vicodin for back pain. i take lexapro and metoprolol which helps with tachycardia and calming the nervous system, hopefully these are not bad drugs to take. but sometimes when my meds are not enough, i wonder what can i take to keep that burning away (adrenaline surge maybe?) i hate having this condition... not only do i hate being sick, i hate that the symptoms are scary... and i am afraid to be alone or drive by myself because of this stuff. i also hate when i feel funny, like my body is trying to correct a dysfuntion.

[issie]

Darlene, we all feel like you do. We wish we could sort it all out and have definitive answers. We have lots of pieces of the puzzle - but, nothing set in stone and concrete. We know some things that seem to help. Have figured out some things that could be going wrong. Know that many of us deal with the same type things. But, having a clear cut ---do this and it will all get better ----unfortunately, we don't have.

Some have found klonopin to be of great help. Others not so much. Each of us are different and what will work for one, may not work for another. Even those of us in the same subset type ---do different things. It's an illness with a lot of trial and error. And many times more error - than anything.

It's good you figured out that glutamate is a problem for you. I think it may be a big part of the problem. Correcting diet, should help. And there are things that can be done to "tweak" this system. Lots of research out there showing how to do that. I have found that motherwort and blk strap molasses helps me with that jumpy, nervey feeling we get from POTS. Also, Lemon Balm helps with sleep and to calm the nervous system down. My sister also has added Passion Flower to the Lemon Balm and says that helps her even more. (But, it was too strong for me.) Others may have other suggestions of things that have worked for them.

There does seem to be a connection with blood sugar. One could be "insulin resistant" and not a true diabetic and that can cause issues too. Diet is one of the best things to adjust if this is the problem. I no longer have issues with my blood sugar - since starting my vegan diet. That has all leveled out.

Issie

[Guest Alex]

Darlene...and everyone else,

I've spoken to quite a few people (not on this site) that have been diagnosed with POTS or other forms of dysautonomia after they started taking benzodiazepines (klonopin, ativan, xanax ...you name it) or as they weaned off or finished their tapers. I have searched and searched for answers as I feel that my problems or at least part of them were induced by the use of benzodiazepines and my subsequent withdrawals from them. I know that my ativan withdrawal coincided with my POTS diagnosis (I had several normal poor man's tilt tests prior to that so there was no sign of POTS and then less than a week after I stopped taking it I had a tilt table test where my HR jumped by 60 bpm upon standing and I fainted - I never fainted before, or after that!) A year late, weaning off klonopin (that was prescribed for POTS) has sent my POTS and actually my health in a tailspin (I don't think there was a single system in my body that wasn't affected by it despite a very long taper). Another thing that may present some interest to you - my blood sugar was all over the place as soon as I weaned off ativan - I was in the hospital and they kept poking me several times a day for that, there were several other blood tests that my endocrinologist has ordered at that time. Things leveled off by themselves shortly after that though.

Those burning sensations you've been describing were part of my benzo experience (they have lessened a lot lately, in fact it's been several months since I had to deal with that), also my HR is not fluctuating as wildly as it used to and for the first time in 2 years (hope I won't jinx it) my blood pressure is quite stable (except for the normal diurnal variations).

The one thing that proved to be a tremendous help for my nervous system was magnesium glycinate supplements (I have tried other types of magnesium in the past but unsuccessfully). It helps the nervous system as well as my heart rate to some extent (as it's a natural calcium channel blocker). I am currently trying to increase my dose from 300 mg a day to see if it may help with my sleeping issues (I have the hardest time falling asleep, staying asleep is no longer a problem).

For what it's worth, a lot of people taking SSRI's and/or SNRI's have mentioned similar side effects and withdrawal symptoms to those reported by patients going through what I call "benzo ***"

Don't give up looking for answers. And don't let my story scare you. Your reactions to meds may be completely different than mine (I couldn't tolerate lexapro or metoprolol, you, on the other hand seem to benefit from them). Hang in there, and please feel free to PM me if you think I can help.

Alex

[issie]

I'm going to bump an article on magnesium. Some forms can cause depression. The article is interesting.

Issie

[Guest Alex]

I would recommend a book called The Magnesium Miracle by Carolyn Dean - really interesting lecture.

Also, I've been taking this form of magnesium for a couple of months now and never experienced depression, but I'm not trying to generalize.

Alex

[POTLUCK]

I guess my post was removed here as the link was an advertisement that cited some studies. The main point of it was that they pointed out that Aspartame added to Magnesium could cause problems that the Magnesium helps with including causing the depression that Issie mentioned.

Thank you.

[issie]

Yes, POTLUCK they removed your post and I really liked that article because it did show that the wrong forms of magnesium can in fact cause depression. There is still the thread on this that can be looked up showing which kinds cause it and which kinds are considered okay.

Issie

[corina]

Potluck, I'm sorry that you seem to not have been informed. It is our policy to do so when we edit. As it was an advertisement for this specific product we had to remove it.

[okiedokie123]

I've spoken to quite a few people (not on this site) that have been diagnosed with POTS or other forms of dysautonomia after they started taking benzodiazepines (klonopin, ativan, xanax ...you name it) or as they weaned off or finished their tapers. I have searched and searched for answers as I feel that my problems or at least part of them were induced by the use of benzodiazepines and my subsequent withdrawals from them.

Hi I can vouch for this. I was going through a bout of chronic insomnia (I didn't think about POTS at this time) so one doctor decided to prescribe Xanax for "severe anxiety." Even after a partial-wean, I experienced full blown benzo withdrawal, which I tried to help get better with time, Valerian root, etc. Eventually, I got too sensitive to sound and noticed my strange flushing, nervousness, etc. At the time I don't think I had orthostatic intolerance but the symptoms closely resembled POTS, to which it took 2 years later to find out what I really had of course with worsening symptoms.

[POTLUCK]

Corina,

Thank you. I was informed by PM. That is why I came to the thread to explain it since it is no longer attached to the thread. The purpose of the "advertisement" was the links to articles that I was referencing as noted above. I had no interest commercial or otherwise in the "advertisement" itself, but I understand that is the policy on the site and that is why it was removed. I was just returning to add some context to the post.

[Suthrngal]

Any updates on this b1 treatment to level glutamate and GABA? I need to level this GABA but am hesitant to take GABA itself. If I even take free glutamate items (msgtruth) I get nerve pain so I know its related. Over excited nerves.....