For Those Of You Who Understand The Underlying Differences In Presentations

[abbyw]

Hi,

With so many different presentations of POTS discussed here, and considering the fact that my Dr. knows nothing about POTS, I am trying to understand what "kind" of POTS I have, if at all.

Before meds, my symptoms were:

*frequent dizzy spells (10 times a day or more), sitting or standing

*increase in pulse of over 30 after standing for 4 minutes

*exercise intolerance

*jittery/"jumping out my skin"/wired feeling

*cold in my bones

*chest tightness/pain when breathing deeply

*presyncope/syncope a few times - after exercising, and once when I got up in the middle of the night

I do not have:

*pooling anywhere in my body

*any MCAS/MCAD/EDS issues that I know of

*shortness of breath

I now take an SSRI, which basically got rid of all of it. I tried reducing my dose by 2.5mg, and it all came back within 2 weeks, without the dizziness or presyncope.I learned my lesson and am increasing again.I was trying to decrease my dose because of the side effects. I would consider trying to switch to something else, but I am trying to understand what exactly I am trying to treat.

If I don't have pooling, then is this still POTS? If the SSRI is working, does that mean that this is not a vasoconstricting issue? I am confused about the serontonin aspect versus the vasoconstricting/pooling aspect of this syndrome.

Thanks as always for your help and insight!

Abby

[HopeSprings]

Can you give a quick background on how this started? Maybe that'll give a clue.

[abbyw]

I would say pretty much sudden onset. I can say that I was never the best exerciser, I was always sensitive to epinephrine (novacaine) at the dentist, and I have had stomach issues for the last few years, but other than that I was a pretty normal person . Then, one day in November, I started getting dizzy spells and exercise intolerance. By December, I was a wreck.

Oh, BTW, I definitely see that I have memory issues as well. I am 38, and I feel like my mom - I can't remember people's names, and I forget appointments, and what I was about to say, etc.

Thanks!

[HopeSprings]

If I don't have pooling, then is this still POTS?

I think these sudden onset cases are the most baffling. I was hit with adrenaline, breathing problems and tachycardia overnight and can't really identify what caused it. I think yes, whether you have obvious pooling or not, it's still POTS. Others have said they don't pool either and others have been helped by SSRI's. Why? ...I have no idea. Sorry I have nothing enlightening to add - hope you get some informed responses.

[bellgirl]

Did you have a virus that could have triggered it? That's what happened to me..

[abbyw]

Not that I know of, although my glands were swollen. But I think my question is more - Do I have POTS? And if so, if I have no pooling, then what does all this blood flow information have to do with me? Why is an SSRI working and would something else work just as well?

Thanks for trying to help!

[Anoj]

how do you know you don't have pooling? you could be pooling in your abdomen and not know it. i'm not sure whether pooling v. not pooling will give you the info you need. i am having the same dilemma with my SSRI. it helps, but i hate the side effects (weight gain). i think the SSRI helps because it does something to your autonomic nervous system, which to me is treating more the root cause rather than the effects of the condition (for example, florinef artificially increasing blood volume).

[peregrine]

Also with the pooling - I thought that I didn't have it in my legs (though compression felt nice, I never noticed pooling) until I took my compression stockings off at my autonomic neurologist's office during the initial visit, and she looked at me a few minutes later and said "you're pooling, by the way." The skin wasn't hugely obviously different - maybe just a little more mottled - but not something I would have noticed on my own. It was really obvious on my TTT, when I didn't have compression and wasn't using muscular control to stay upright.

(I'm not trying to say you do pool, just sometimes it can be hard to tell and I thought that I didn't until I saw this neurologist)

[Mytwogirlsrox]

We sound very similar. Im not sure I pool, and celexa has really helped me. I have not a lot of scientific theory to back this up, but maybe the ssri helps because of lack of sympathethic withdrawal? So ssri would calm an over active SYmpathetic NS. ?? Who knows, I still doubt my POTs diagnosis.. Seemed to come out of no where.. I didnt even notice the tachycardia, just felt anxious... Maybe it's that we just don't hold on to fluid like other people so we have chronic low blood volume?? But regardless celexa has really helped me feel a lot better

[ramakentesh]

Also with the pooling - I thought that I didn't have it in my legs (though compression felt nice, I never noticed pooling) until I took my compression stockings off at my autonomic neurologist's office during the initial visit, and she looked at me a few minutes later and said "you're pooling, by the way." The skin wasn't hugely obviously different - maybe just a little more mottled - but not something I would have noticed on my own. It was really obvious on my TTT, when I didn't have compression and wasn't using muscular control to stay upright.

(I'm not trying to say you do pool, just sometimes it can be hard to tell and I thought that I didn't until I saw this neurologist)

I cringe. Not necessarily - two studies have successfully argued that the mottled skin is caused by reduced blood flow to the skin perhaps from nitric oxide abnormalities...

[ramakentesh]

Hi,

With so many different presentations of POTS discussed here, and considering the fact that my Dr. knows nothing about POTS, I am trying to understand what "kind" of POTS I have, if at all.

Before meds, my symptoms were:

*frequent dizzy spells (10 times a day or more), sitting or standing

*increase in pulse of over 30 after standing for 4 minutes

*exercise intolerance

*jittery/"jumping out my skin"/wired feeling

*cold in my bones

*chest tightness/pain when breathing deeply

*presyncope/syncope a few times - after exercising, and once when I got up in the middle of the night

I do not have:

*pooling anywhere in my body

*any MCAS/MCAD/EDS issues that I know of

*shortness of breath

I now take an SSRI, which basically got rid of all of it. I tried reducing my dose by 2.5mg, and it all came back within 2 weeks, without the dizziness or presyncope.I learned my lesson and am increasing again.I was trying to decrease my dose because of the side effects. I would consider trying to switch to something else, but I am trying to understand what exactly I am trying to treat.

If I don't have pooling, then is this still POTS? If the SSRI is working, does that mean that this is not a vasoconstricting issue? I am confused about the serontonin aspect versus the vasoconstricting/pooling aspect of this syndrome.

Thanks as always for your help and insight!

Abby

Hard to say as there is no consensus (despite what some docs might say) about etiology in POTS. Other than that its most likely varied.

Have you ever taken any serotonin receptor medications for migraines?

The strongest evidence out there is that a portion have some sort of autoimmune neuropathic process. But there may be other autoimmune processes occuring and work by a doctor from Oklahoma may have evidence for other sights, while beta 2 receptors could be a target according to work from Mayo. Autoimmunity should be (according to Dr Theiben) be suspected in all cases with an acute onset. a3 ganglionic receptor autoantibodies were detected at very low level in between 9 to 25% of patients.

Other suggested mechanisms for which there is some evidence:

1. increased vasodilators in blood vessels

2. increased ang II causing faulty vasoconstriction, sympathetic excess and baroreflex

3. parasympathetic withdrawal/vagal withdrawal and baroreflex abnormalities

4. NET defiency and consequential cerebral autoregulation problems

5. cerebral autoregulatory problems of unknown origins.

Dr Grubb also suggested some POTS had low serotonin levels and there was something about sert receptors in CFS.

Unfortunately treatment success does not always indicate what is the causal factor.

[abbyw]

Hi,

Thanks everyone for your input.

I never suffered from migraines (and I hope I never do!) I took an SSRI at one point 11 years ago for Postpartum depression for several months, but that was it.

Not sure if it is related, but in the several months prior to the sudden onset, my IBS was so bad that I was having some sort of vagal response when I would get a bad bout of diarrhea. I did not actually faint, but I came pretty close pretty often. It was almost as if while my IBS got under control, my body needed a different way to let those vagal responses out - and POTS came along.

I did ask my doctor to check for autoimmune issues, and she checked my ANA, and it came out good.

Thanks again,

Abby

[peregrine]

I cringe. Not necessarily - two studies have successfully argued that the mottled skin is caused by reduced blood flow to the skin perhaps from nitric oxide abnormalities...

Hunh - I hadn't seen those (and perhaps she hadn't either, although that would surprise me somewhat). Is there a way to distinguish between the two? (and - curious - what are the cites on those? I'd love to read them!) Thanks :^)

[issie]

I fall into the #2 of your possible reasons, Rama. My genetic markers show high Angiotension II levels with lowered NO. Hummmmm! I'm learning a lot through the genetic testing. It also is pointing me to what to do to correct the dysfunction. I have a whole lot to learn about all this. It will take awhile. But, I'm excieted - cause I think, I'm FINALLY going to have some answers. Instead of just shots in the dark.

Issie

[issie]

I have questions as to whether people with high NE levels have NET dysfunction. It's very possible there is another reason for it and not a transporter issue. This was a very small subset of people that had this issue. But, it seems there are plenty of us with too much NE. This transporter can also affect dopamine levels. Maybe there are issues with DAT (dopamine transporter) as well. The genetic connections are very complex - but intriguing.

Issie

[issie]

As for serotonin and dopamine levels - there can be some genetic mutations in the Methylation SNP's that can explain the dysfunctions here. There may be ways to tweak this system and correct the dysfunctions - thereby, bringing your body back in balance and functioning at a more even level. (Can't explain this yet. Just learning about it and really don't have a grasp of what it all means yet. So, no one ask me yet. )

Issie