Is Genetic Pots Always Hyperadrenergic?

[summer]

Hi All!

I posted a couple of times a few weeks ago prior to autonomic testing, including TTT. I'm so relieved to finally have a diagnosis that makes sense. It must be strange for these ANS doctors to see people so happy and relieved to receive diagnoses like POTS, but I suppose they do realize what most patients have been through prior to seeing them.

The doctor was wonderful and took a lot of time explaining things to me which I really appreciated. But of course, The more I understand, the more questions I have!

He feels I have had mild orthostatic intolerance since I was a teenager, but that a viral infection, and post viral fatigue have dramatically worsened my OI. This made so much sense to me and explained a lot of things I couldn't understand about myself for years!

I have a couple of first degree relatives who also have had symptoms of OI, so he suggested it was likely genetic considering that, and the fact that I did not show signs of periferal neuropathy with the testing. He also mentioned that I was hyperadrenergic once during our conversation although he did not clearly say "you have hyperadrenergic pots".

So my question is this. Is genetic POTS alway hyperadrenergic? Also, I had a very bad reaction to one dose of an SNRI that was suggested by one of my docs a while ago (VERY anxious, worsened tachycardia, muscle tightness). It was frightening and I will never take it again. Has anyone else experienced this and could it be related to hyperadrenergic POTS?

Summer

[flop]

Sorry, I don't know much about genetic POTS - hopefully Ernie or one of the other members with familial POTS will be able to chime in. On the separate issue of horrible reactions to an SNRI, I had a similar experience when I first took Seroxat / Parotetine an SSRI. If you do a search for "flop paroxetine" you should find some more details.

Flop

[summer]

Hi Flop,

Thanks for responding. I tried the search you suggested, plus a couple of other combinations I thought might work, but was unable to bring up your previous post. I am very interested in hearing about the reaction you experienced. Any other suggestions for how I might find that thread?

Summer

[flop]

I'll have a hunt and see if I can find it for you.

Flop

[flop]

I've managed to locate a few posts for you (can't find the original Paroxetine thread I started in November 2006). I have got the post numbers but will have to admit that I have no idea how to open the posts from just the numbers. I hope someone else can explain how to do it??

#79259

#89243

#90889

Flop

[summer]

Thanks Flop .....and yes, if anyone can tell me how to get to those posts I'd appreciate it.

[Sunfish]

flop & summer et al -

numbers aren't generally a way of locating/ referencing a prior post. the best way to reference earlier posts/ threads is usually with the actual link to the post, so hopefully you can post the links flop? i've tried a few things to try to pull up a post with a number but haven't had any luck. if you're having trouble posting links after a search let me know & i'll do what i can to help.

sorry i can't be of more help!

melissa

[Sunfish]

hi summer -

my prior post was solely re: the technical issues of the posts flop was trying to reference. now i'll try to respond a bit to your original questions.

as you mentioned, i do think that most (if not all) of the autonomic docs are probably quite familiar with the difficulties patients have in getting diagnoses & thus are fairly used to the sense of relief often felt when the diagnosis "finally" comes. people's experiences with docs still varies greatly, though, even with the "autonomic docs" so to speak, so it's great to hear that you had a good experience re: your doc taking as much time with you as s/he did following your positive test results.

in regard to your questions about genetic as well as hyperadrenergic POTS, the research is definitely still "in the works", as it is within many (most) realms of autonomic dysfunction. some of your specific questions, however, do have answers. at this point in time, most cases of "genetic POTS" are designated as such only clinically (i.e. various family members showing symptoms) rather than via definitive genetic testing. "genetic POTS" is definitely not always hyperadrenergic POTS, nor is hyperadrenergic POTS always genetic.

additionally, it's possible for a person with POTS to have a hyperadrenergic reaction in a given situation at one point in time (testing or otherwise) but not diagnostically have "hyperadrenergic POTS". confusing, i know, and may or may not apply to your situation, but thought you'd want to know that additional piece of info to add to your confusion .

last but not least, your reaction to the SNRI you tried may or may not have been related to the "type" of POTS you have. while it's true that understanding the mechanism behind your POTS (hyperadrenergic, neuropathic, etc) CAN help direct treatment/ meds to SOME extent, it's FAR from an exact science and is by no means the only factor that plays in to how certain people handle various medications/ treatments. as you'll see frequently on the forum, different people react very differently to different meds; sometimes there are "reasons" that make this understandible but perhaps more often than not it's no more than trial & error.

hopefully you'll be able to see your doc again for additional questions that have come up since your testing/ diagnosis? it's also important to realize, though - for the sake of your own sanity - that in the land of dysautonomia, there are many questions that simply don't have clear answers. so while it's good to explore things & learn what there is to learn, it's also important to not drive yourself crazy trying to find THE ultimate answer for every question.

hope this helps,

melissa

[Mary P]

Hi Summer,

It's good to read about your diagnosis. I'm wondering what hyperadrenergic means? I'm going to make an appt with the clinic at the Health Sciences Centre in Hamilton. That is supposed to be a top notch clinic, just as it is in Montreal. Hamilton is much closer to me. I see where one of the doctors there has PAF, like me, so I figure that is a plus.

Mary P

[summer]

Thanks for your response, Melissa. I'm sure you are right and at the present time, there are probably not answers to all of my questions. I've been doing some reading, and if I'm understanding right, it sounds like the hyperadrenergic state is common to all types of pots, regardless of whether or not it is "central hyperadrenergic pots" so being hyperadrenergic does not neccessarily mean you have "hyperadrenergic pots" - does that sound right? It is confusing, but interesting as well - I have a lot to learn.

in regard to your questions about genetic as well as hyperadrenergic POTS, the research is definitely still "in the works", as it is within many (most) realms of autonomic dysfunction. some of your specific questions, however, do have answers. at this point in time, most cases of "genetic POTS" are designated as such only clinically (i.e. various family members showing symptoms) rather than via definitive genetic testing. "genetic POTS" is definitely not always hyperadrenergic POTS, nor is hyperadrenergic POTS always genetic.

additionally, it's possible for a person with POTS to have a hyperadrenergic reaction in a given situation at one point in time (testing or otherwise) but not diagnostically have "hyperadrenergic POTS". confusing, i know, and may or may not apply to your situation, but thought you'd want to know that additional piece of info to add to your confusion .

last but not least, your reaction to the SNRI you tried may or may not have been related to the "type" of POTS you have. while it's true that understanding the mechanism behind your POTS (hyperadrenergic, neuropathic, etc) CAN help direct treatment/ meds to SOME extent, it's FAR from an exact science and is by no means the only factor that plays in to how certain people handle various medications/ treatments. as you'll see frequently on the forum, different people react very differently to different meds; sometimes there are "reasons" that make this understandible but perhaps more often than not it's no more than trial & error.

hopefully you'll be able to see your doc again for additional questions that have come up since your testing/ diagnosis? it's also important to realize, though - for the sake of your own sanity - that in the land of dysautonomia, there are many questions that simply don't have clear answers. so while it's good to explore things & learn what there is to learn, it's also important to not drive yourself crazy trying to find THE ultimate answer for every question.

hope this helps,

melissa

[summer]

Hi Mary!

So glad to hear you have found a good clinic closer to you. Traveling really does add stress. I hope your experience there is a good one.

I may not be the best one to try to answer your question as I'm new to all this (so anyone else, please feel free to correct me, or add to this). "Hyperadrenergic" refers to an overactivation of the sympathetic nervous system - this is basically your "fight or flight system". Hyperadrenergic symptoms may include tremor, anxiety, and migraine headaches and sometimes orthostatic hypertension. "Hyperadrenergic POTS" is a less common form of POTS compared to neuropathic POTS. A hyperadrenergic state can be characteristic of POTS in general, regardless of the type. There is lots of info on the net about both if you do a search. Hope this helps.

Hi Summer,

It's good to read about your diagnosis. I'm wondering what hyperadrenergic means? I'm going to make an appt with the clinic at the Health Sciences Centre in Hamilton. That is supposed to be a top notch clinic, just as it is in Montreal. Hamilton is much closer to me. I see where one of the doctors there has PAF, like me, so I figure that is a plus.

Mary P

[jump]

Hi Summer!

I don't know if I have hyperadrenic POTS or not (never been tested) but I've wondered if I do since in all my tests I tend to have high bp or an increase upon standing instead of low. Anyway, I also had a very adverse reaction to an SNRI and my docs were very surprised until I talked to them about my POTS - they felt the adverse reaction was related and advised me not to try any more snri's. I think it does affect everyone differently, but since it affects norepinephrine it makes sense that it could make you feel worse.

Hope you find something that makes you feel *better* instead!

jump

[summer]

Jump,

My doctor also seemed to think my reaction to the SNRI was not surprising with my new diagnosis. I also have an increase in BP on standing, but then it seems to fall gradually over 10-20 minutes. Just wondering, did POTS come on suddenly for you, or was it a more gradual onset?

Summer

[jump]

Well, I'm not sure. I know I didn't have it as a child, even though my mother has NCS so I think there's probably a gene in my family somewhere. I had an illness that has POTS-like symptoms as a secondary-effect -- but then after I recovered from the illness, the symtpoms never went away, and in the past few years have been variable in how bad they are. So the original onset of symptoms came on probably within a few months.... I'm not sure if that answers your question really though. Certainly if you find anything else out from your doc, you'll have to share with us!!

jump