Low Serotonin Levels In Pots/ncs Patients

[dakota]

Sorry if this has been seen before, but it was new to me. It's entitled "Platelet Delta Granule and Serotonin Concentrations Are Decreased in Patients with Postural Orthostatic Tachycardia Syndrome."

http://ash.confex.com/ash/2009/webprogram/Paper24290.html

[sue1234]

That's very interesting! I have not seen anything written on that before. I had asked about a month ago if many people had previously been on an antidepressant before. I didn't get many responders(if I remember correctly), but had wondered about serotonin in relation to POTS. My thought was I had taken antid. 20 years ago for a number of years and then quit. I was wondering if that could have set me up for this POTS, as in maybe the meds worked and then made something "dependent" and when I quit, they didn't know how to work anymore. Did that make sense? Like, if the serotonin helps vasoconstrict, then when I quit the antid. after so many years, did my vessels then lose their own ability to vasconstrict? It is all interesting.

[Vlinder]

this is mij first post her, sorry if my english have some mistakes, but i am from the netherlands.

I use an AD since march of this year.

my diagnose of POTS have I get 6 weeks ago after a medical searc of an year.

so at me the symptomes of a to high serotine in me was earlier diagnosed than POTS.

it is the firts time that I use AD.

[sugartwin]

Ah, that's funny because platelet dense granule deficiency is rumored to be what causes easy bleeding in Ehlers-Danlos Syndrome (EDS) it really makes sense if you consider then how prone people with EDS are to dysautonomia. So low serotonin is behind both inadequate vasoconstriction and inadequate blood clotting.

Fascinating stuff.

[firewatcher]

This one just doesn't show up on a pubmed search at all! I was told my serotonin levels were fine, but according to that article, they are also low. Hmm. I know that I do not react to antidepressants well at all, I always got wicked headaches from every one of them. Maybe since I already constrict too hard, more serotonin just makes it worse. Weird.

Good research!

[lieze]

Just a couple things that I found out about this and I'm sorry I tried to read the article and on my ebook I can't get the whole page.

I was told that it's not that we don't make enough serotonin but that we use it all up.

Also what my doctor told me was that people with anxiety burn up their serotonin too quickly so the body has to continually work hard to make more. She said by taking an anti D I will not make too much ever but I just won't go through it so quickly so my body won't constantly be stressed to renew the supply.

Also researching neurotransmitters in the body and I could be misquoting this but it said something like only 2% was actually found in the brain. Particularly serotonin affected the heart and the digestive system 2 areas that many of us POTS patients feel the crunch.

I found that interesting.

Now I just have to get my nerve up to take a little tiny sliver of this Lexapro!

[sue1234]

Leize,

That would make sense with me, as I have a constant state of low level anxiety all the time that ramps up at the littlest of things.

I know many years ago when my doctor was trying me on the "new" SSRIs as they were coming out, I had bad reactions to every one of them. So, when they want me now to try an antidepresant, I am just like you--I'm scared to try it and if I ever do try it, it will be a sliver, too!

[juliegee]

Another GREAT article! This is EXACTLY what my son's doctors have asserted from the beginning. Like Jennifer Mack was unable to tolerate SSRI's w/o serious side effects until we titrated up in tiny, tiny increments. Even with THAT, he was stricken with severe headaches, vomiting, fainting, etc. He persevered to a therapeutic level & they have been incredibly helpful.

His docs surmised that the severe reactions are the body's "outrage" (is that a medical term?) at the bombardment of a foreign neurotransmitter.

Julie

[Guest tearose]

It is still an off label use and they still need to due further research.

My father was given a tiny dose of an antidepressant to treat his POTS type symptoms.

His POTS type symptoms did slightly improve but his ability to make his own dopamine declined and he wound up with Lewy Bodies.

The the long term results were horrible and I feel terrible that I ever encouraged him to "just give it a try". It accelerated his decline.

I just say no to drugs. There is more that they don't know and the cost to our one body can be permanent damage.

Although I may be slower and physically challenged with POTS I still can function. We all make our own choices. We must all choose wisely for our own body.

[lieze]

Thanks for sharing your story tearose.

I'm sorry that happened.

I am trying to say yes but something is overriding it and saying no.

[PotsMom]

Thanks so very much for sharing this! I find it very interesting because a couple of years ago our naturopath ordered a 24-hour urine to measure neurotransmitters for my son, many of which were out of the normal range and serotonin was significantly low. I found that very interesting but I also found that apparently many MDs do not think much of that kind of testing as no one who has seen my son since has made even a passing comment about it. I have always thought it was of very significant interest, but what do I know??!! The fact that my son among many other things has increasingly horrific problems with sleep certainly goes with that as well. We have an upcoming visit soon, and this article will go with us, attached to those previous studies! Thank you so much for sharing the link!

[heiseygirl]

i have had pots since 2001 which wasnt diagnosed totally till last year i have low serotonin and i have Von wilebrands a blood problem where my blood doesn't clot properly. I also have alot of trouble with blood pooling. Ironically when having any type of surgery i need a special iv of ddavp to helpwith my bleeding problem

[Vlinder]

I get citalopram, started with a low dosis. In the begin I had problems, but soon it get beter. The dosis I use at this moment is 30 mg, I started with 10 mg.

It makes me feel a bit comfortabler in my head, relaxder in my live.

Before I used my serotonine for each little thing coming in my life, i always wanted the controle about evrything. So heavy to do that each day.

The POTS do not go over with it, but for me it is looking to the way it makes me easier to live with it.

Have a nice day.

ps: I hope you understand what I write, because I am a dutch girl.

This is a great forum about POTS, in Netherland I found nothing about this.

[issie]

It is still an off label use and they still need to due further research.

My father was given a tiny dose of an antidepressant to treat his POTS type symptoms.

His POTS type symptoms did slightly improve but his ability to make his own dopamine declined and he wound up with Lewy Bodies.

The the long term results were horrible and I feel terrible that I ever encouraged him to "just give it a try". It accelerated his decline.

I just say no to drugs. There is more that they don't know and the cost to our one body can be permanent damage.

Although I may be slower and physically challenged with POTS I still can function. We all make our own choices. We must all choose wisely for our own body.

Lewy Bodies is associated with Parkinson's Disease. Giving your father seratonin helped in one way, but if he'd been given dopamine with it, it would have helped more. There is nothing that can be done for Lewy Bodies. Usually they don't know a person has it until there is an atopsy done. If, it helped him to feel better, that's a good thing. The progression of the Lewy Bodies would have happened anyway. So don't feel guilty for the suggestion -- if his quality was better --- IT WAS BETTER for him. The medicine didn't give him the decline in dopamine, it just unbalanced it a little faster. Too bad the doctor didn't try some Wellbutrin with the SSRI.

[juliegee]

I get citalopram, started with a low dosis. In the begin I had problems, but soon it get beter. The dosis I use at this moment is 30 mg, I started with 10 mg.

It makes me feel a bit comfortabler in my head, relaxder in my live.

Before I used my serotonine for each little thing coming in my life, i always wanted the controle about evrything. So heavy to do that each day.

The POTS do not go over with it, but for me it is looking to the way it makes me easier to live with it.

Have a nice day.

ps: I hope you understand what I write, because I am a dutch girl.

This is a great forum about POTS, in Netherland I found nothing about this.

Vlinder,

Good for you for finding us!!! I'm sorry there's nothing similar in the Netherlands. All of these medical terms often feel like foreign words to me. I can't imagine handling the info in another language. We have members from all over the world. You are in good company & very welcome.

Hugs-

Julie

[lieze]

I just took care of someone in the nursing home that had Lewy Bodies.

He donated his brain to science.

I can't remember what all diagnosis he had but he was on sinemet and anti Parkinson's drug now that you mention it.

He was also on midodrine.

The good news is he lived a long time-was an old man when he died and I had the impression he lived a productive life. Yeah!

It is really sad to see the things that take people and what they go through.

I hope that in the future medicine can prevent this type of decline for people and they can just die of regular old age without any of the handicaps they have to go through.

[Guest tearose]

issie, I understand that some will advocate for the off label use of drugs so someone can manage some quality of life now. I am in the position for advocating for NO use of drugs when the long term effects are still unknown. I would much rather had my dad around in a wheel chair than dead earlier. More importantly, HE would have wanted no medicine too but others were making the decisions for him.

[issie]

I understand how you feel. Most of the time, I'm an "all natural" gal myself. But, in some cases medicine is necessary. It's hard to decide when that is necessary and when to just suffer through it. We have to make our decision based on the information and knowledge we have at the time and realize that the future may totally change todays reality. But, for today == it is reality. None of us know how long we will live. But, if we can't LIVE while we're alive, there is no assurance of being alive tomorrow. So, if today can be better than an unkown tomorrow -- go for it. We could be in an accident, get cancer, the list goes on.......but, today if our quality is better --- that's so much better than an unkown, possible horrible quanitity.

It took me many, many years to come to this conclusion. Lots of research and experiements with "natural" medicine. Which, by the way, is still my first line of defense. But, in cases of severe "Life Quality" issues, sometimes the only choice is to "try" medicine. IF it makes a difference --Hooray!! If, not, take an Olive Leaf and Ginger with Tumeric and call it as good as it gets.

Sorry for your father and the grief you feel. But, don't beat yourself up over his trying the medicine. It did help for a while and his "quality" was better if not his "quanitity".

[friday7]

That's very interesting! I have not seen anything written on that before. I had asked about a month ago if many people had previously been on an antidepressant before. I didn't get many responders(if I remember correctly), but had wondered about serotonin in relation to POTS. My thought was I had taken antid. 20 years ago for a number of years and then quit. I was wondering if that could have set me up for this POTS, as in maybe the meds worked and then made something "dependent" and when I quit, they didn't know how to work anymore. Did that make sense? Like, if the serotonin helps vasoconstrict, then when I quit the antid. after so many years, did my vessels then lose their own ability to vasconstrict? It is all interesting.

I also was on Anti depressants years ago. I was on them for over ten years..Shortly after I started feeling sick, I got off of them.

I too wondered whether they could have had anything to do with my illness.

I wondered if maybe the antidepressants caused my illness.

Now I am also wondering if I had POTS all along, and those ten years I had those particular antidepressants at those doses, were maybe keeping me from feeling the symptoms..IDK.

[ramakentesh]

One of the most interesting studies to be published regarding POTS - but impossible to get any current doctors to even comment on this one. it fits like a glove. It explains paradoxical findings in POTS (intact or deranged autonomic control and alpha 1 activity). It also seems to explain the gastro symptoms - 90% of serotonin activity in the human body is utilised in digestion.

Also hypervigilance which is often describe in POTs occurs in low cerebral serotonin states

[issie]

One of the most interesting studies to be published regarding POTS - but impossible to get any current doctors to even comment on this one. it fits like a glove. It explains paradoxical findings in POTS (intact or deranged autonomic control and alpha 1 activity). It also seems to explain the gastro symptoms - 90% of serotonin activity in the human body is utilised in digestion.

Also hypervigilance which is often describe in POTs occurs in low cerebral serotonin states

I feel that this is true. But, what about us that don't react well with medicines, or we paradox with them? I haven't found a way to increase serotonin that doesn't cause undue distress in other ways. Any suggestions? I didn't do well with 5HTP or St. Johns Wort either. We know there is a serotonin deficiet, but is it because there is an increase of the other hormones, that imbalance the seratonion. Maybe they need to be surpressed and then the serotonion will come up on it's own or at least balance itself out.???????

[PotsMom]

That's a great question. We see the same thing with my son - we know his serotonin is low and yet the serotonin medications we have tried do nothing for him and in fact make the sleep issues even worse.

[juliegee]

My son, who started his SSRI at 13 y/o, also had major hypersomnia issues with lexapro. When his dosage was upped, he was so wired he literally didn't sleep for several days. Per his doc's instructions, we learned to harness that extra energy by taking the lexapro in the AM. This is a bit of a paradoxical reaction as SSRI's typically are calming & taken in the PM.

I have repeated this over and over (forgive me), but I think it bears repeating. Before you give up on an SSRI, start with a tiny dose and work your way up to a therapeutic level. Many have EXTREMELY negative reactions initially.

Julie

[PotsMom]

Julie,

Thanks for sharing that. We have an appointment soon and it's an idea I will bring up as a possibility.

[ramakentesh]

Could also be that some POTs patients have too much serotonin. Excessive vasoconstriction and sympathetic drive is the result.