P.O.T.S. and Neurotransmitters

[Sallysblooms]

I want to see what everyone is doing about P.O.T.S. and neurotransmitters. My 5htp is great for seratonin, but I have now started Adrecor for epinephrine and norepanephrine support. I have also taken Travacor, but now take 5HTP instead.

I know P.O.T.S. is caused mostly by the neurotransmitters not telling the body what to do, not directing the traffic. I have been doing many other things, drinking tons of water, many wonderful supplements etc, but they cannot get used properly without the brain. I have guidance from two great doctors with my supplements.

Do you all take things for the neurotransmitters? I have had blood tests.

I am sure there can be other reasons for P.O.T.S. but addressing this problem is important.

 

[ahimsa]

I want to see what everyone is doing about P.O.T.S. and neurotransmitters. ...

Do you all take things for the neurotransmitters? I have had testing for levels of course.

I'm not familiar with these tests. Would you mind telling us what kind of testing you have had done to measure neurotransmitters? I have a vague recollection of some tests that were not approved by the FDA (they sent warning letters to labs ?? don't remember all the details). I'm not aware of any legitimate testing so I'd love to hear more.

Thanks!

 

[Sallysblooms]

Blood tests.

 

[ahimsa]

Blood tests.

Who did the testing? Do you have any information sources (links to web sites? pubmed references?) that you can share? I don't understand how this testing works so I'd like to know a bit more about it. I've never heard of these tests from my primary care doc or my cardiologist. If I just say "blood test" to them then I doubt they will know what I'm talking about.

I'd appreciate any information you have on this so I can read more about it. I have read several web sites about POTS and other types of dysautonomia (e.g., http://www.ndrf.org/ , http://www.dinet.org , http://www.nymc.edu/fhp/centers/syncope/pots.htm ) but this is the first time I've seen a reference to neurotransmitter testing. Thanks!

 

[Sallysblooms]

I have read about it. I don't keep track though. It is just one tool. Doctors that have experience with CFS and blood testing would know I would think.

Anyway, I guess the question isn't about testing for it, but about those who have used supplements for the neurotransmitters. I know people talk about the prescriptions for them all the time on this forum.

 

[Sushi]

Hi Sallysblooms,

I have tested neurotransmitters (through blood and urine--Neuroscience labs does some of these tests) and treated accordingly for some years, and yes, I got temporary good effects from balancing neurotransmitters through this method. For me, increasing the level of norepinephrine in the synapses was particularly helpful.

However, I am a lot better after tapering off these methods and trying to treat deeper roots to the problem--i.e. what is causing the neurotransmitters to be out of balance. Methylation treatment has helped me, treating for toxins, viruses, and bacterial infections has helped me, doing protocols to increase immune function has helped (Low Dose Naltrexone in particular). And now, I am finding the most benefit yet through treating XMRV. I no longer need drugs (except sleep aids, have much more stamina, less OI etc.

I know this is very complicated and that we all have different problems and responses, but I just wanted to share my experience--which is basically that it may be necessary to dig more deeply into the causes to really begin to restore health. Otherwise, I might be taking different remedies to deal with imbalances--forever--when it may be possible to work on the root of the imbalances themselves.

I wish you the best with this. POTS is awful!

Sushi

 

[Sallysblooms]

I agree. We are really covering all bases. Doing lots of things for my immune system and Epstein Barr. Also, balancing my hormones. Other good things too. Supporting sleep, energy, heart...

I had a hysterectomy about 7 months before my problems with P.O.T.S. and I think that was part of the problem. I was put on a patch. I think things went downhill after that surgery. I am much better in many ways now, but I still have a ways to go. I hope this is one of the keys to help.

 

[sela]

how are you treating xmrv?

 

[xchocoholic]

You may want to take a look at amino acids too. These are precursors for neurotransmitters ... I've found that by taking 2 Solgar essential aminos before getting out of bed in the am and then every few hours afterwards, my heart doesn't pound when I lay down due to OI (getting fuzzy headed and weak) . Granted this is just one small symptom of my OI but it certainly makes me feel better ...

Also, I've just started taking DHEA and I've noticed a difference but it's hard to describe ... the best way I can think of is that I don't feel the blood re-entering all the organs in my upper body when I lay down due to OI (getting fuzzy headed and weak) like it used to. Try holding your breath for a minute and feel the oxygen re-enter your cells if you want to know what I'm talking about ...

I plan on looking closer at my adrenals to see what role they are playing in all of this. I suspect either adrenal fatigue or since I'm a celiac, I could be dealing with Addison's ... X

 

[Sallysblooms]

I do take amino acids, many good supplements. That is mainly what Adrecor is. I take DHEA also. I have doctors that keep close track of my hormones to keep them balanced. After my hysterectomy, the hormones were way off, I just had estrogen. My OBGyn was clueless.

 

[BEG]

However, I am a lot better after tapering off these methods and trying to treat deeper roots to the problem--i.e. what is causing the neurotransmitters to be out of balance. Methylation treatment has helped me, treating for toxins, viruses, and bacterial infections has helped me, doing protocols to increase immune function has helped (Low Dose Naltrexone in particular). And now, I am finding the most benefit yet through treating XMRV. I no longer need drugs (except sleep aids, have much more stamina, less OI etc.
I know this is very complicated and that we all have different problems and responses, but I just wanted to share my experience--which is basically that it may be necessary to dig more deeply into the causes to really begin to restore health. Otherwise, I might be taking different remedies to deal with imbalances--forever--when it may be possible to work on the root of the imbalances themselves.

Sushi,

This is so true. Although I am very happy to be among those who respond extraordinarily well to conventional medicine, I realize I am not getting to the root of the problems and will no doubt be on these medications for life. I've saved lots of money in that I only have modest co-pays while I wait for insurance paid, effective treatment for CFS, not just symptomatic relief. I believe you make very good points ,and I thought it wouldn't hurt to repeat them.

BTW, neurotransmitters can be checked during an annual CBC (complete blood test) at your physicians office. It wouldn't hurt to ask.