Combination Pots?

[Altruism]

While researching the topic, I found this text:

Combination POTS is blend of Partial Dysautonomic (PD) POTS and Hyperadrenergic POTS. Combination POTS patients have LOW blood pressure (like PD POTS) and have HIGH blood pressure (like Hyperadrenergic POTS); they also have a HIGH heart rate. A patient’s BP can spike or drop without warning and sometimes without a clear cause. Combination POTS patients have a high level of Norepinephrine (NE) causing their sometimes high blood pressure. Hypermobility Joint Syndrome is a major characteristic of Combination POTS. If a patient has high Norepinephrine (NE) and has Hypermobility Joint Syndrome; it meanings they’re the Combination POTS. True Hyperadrenergic POTS patients can NOT have Hypermobility Joint Syndrome or LOW blood Pressure. The Combination POTS patient can have any innumerable blend of PD and Hyper POTS symptoms.

The Combination POTS patient is the most common and the most difficult to treat. PD and Hyper POTS have completely different treatment plans. If a Hyper POTS patient is treated with PD POTS medications; that will make the patient very sick and visa versa. Their doctor has to assess if the patient’s symptoms are more PD or more Hyperadrenergic and treat them accordingly. Over time their PD and Hyper POTS symptoms can wax & wane over time for no known reason. So having a good understanding of both types of POTS is crucial to understanding the patient with Combination POTS. Combination POTS is a chronic disease and the patient will unfortunately have it the rest of their life. As far as treatments that are used for both types of POTS and will work for Combination POTS is: exercise, Beta Blockers, a low carbohydrate/high protein diet & regularly getting stage 4 sleep.

Source: http://dysgirl.com/tag/hyper-pots/

What puzzles me:

1."If a patient has high Norepinephrine (NE) and has Hypermobility Joint Syndrome; it meanings they are the Combination POTS. True Hyperadrenergic POTS patients can NOT have Hypermobility Joint Syndrome or LOW blood Pressure." - is this true? Why true hyperPOTsies cannot have EDS, can anyone explain this to me, please? Does this mean all EDSers have either PD or ComboPOTS? Hm!

2. How is combo POTS treated? Is it possible to treat? What is considered combination POTS and how is it diagnosed? I have very low pulse pressure and high BP while standing, but low BP with low pulse pressure while sitting - is this indication of hyper POTS or combo POTS?

3. What is the prognosis of combination POTS? Is it worse than the other POTS subtypes?

Thank you!

[yogini]

Is this from a medical article or from a patient website? I would rely only on information cited to a medical author. I have not heard about this ComboPOTS as a medical classification. However, there are all sorts of variations of symptoms here on Dinet. I don't think your treatment or prognosis would be any different than the rest of us.

[Altruism]

It should be a patient's blog, I've posted the link. You're right, I should not obsess over blogs and focus on medical facts, but I needed confirmation that it's NOT true.

[Angela]

While researching the topic, I found this text:

Combination POTS is blend of Partial Dysautonomic (PD) POTS and Hyperadrenergic POTS. Combination POTS patients have LOW blood pressure (like PD POTS) and have HIGH blood pressure (like Hyperadrenergic POTS); they also have a HIGH heart rate. A patient’s BP can spike or drop without warning and sometimes without a clear cause. Combination POTS patients have a high level of Norepinephrine (NE) causing their sometimes high blood pressure. Hypermobility Joint Syndrome is a major characteristic of Combination POTS. If a patient has high Norepinephrine (NE) and has Hypermobility Joint Syndrome; it meanings they’re the Combination POTS. True Hyperadrenergic POTS patients can NOT have Hypermobility Joint Syndrome or LOW blood Pressure. The Combination POTS patient can have any innumerable blend of PD and Hyper POTS symptoms.

The Combination POTS patient is the most common and the most difficult to treat. PD and Hyper POTS have completely different treatment plans. If a Hyper POTS patient is treated with PD POTS medications; that will make the patient very sick and visa versa. Their doctor has to assess if the patient’s symptoms are more PD or more Hyperadrenergic and treat them accordingly. Over time their PD and Hyper POTS symptoms can wax & wane over time for no known reason. So having a good understanding of both types of POTS is crucial to understanding the patient with Combination POTS. Combination POTS is a chronic disease and the patient will unfortunately have it the rest of their life. As far as treatments that are used for both types of POTS and will work for Combination POTS is: exercise, Beta Blockers, a low carbohydrate/high protein diet & regularly getting stage 4 sleep.

Source: http://dysgirl.com/tag/hyper-pots/

What puzzles me:

1."If a patient has high Norepinephrine (NE) and has Hypermobility Joint Syndrome; it meanings they are the Combination POTS. True Hyperadrenergic POTS patients can NOT have Hypermobility Joint Syndrome or LOW blood Pressure." - is this true? Why true hyperPOTsies cannot have EDS, can anyone explain this to me, please? Does this mean all EDSers have either PD or ComboPOTS? Hm!

2. How is combo POTS treated? Is it possible to treat? What is considered combination POTS and how is it diagnosed? I have very low pulse pressure and high BP while standing, but low BP with low pulse pressure while sitting - is this indication of hyper POTS or combo POTS?

3. What is the prognosis of combination POTS? Is it worse than the other POTS subtypes?

Thank you!

I have low bp when laying (approx 100/54) but I am dx hyperpots, pretty high bp when standing 150/100 and higher. and I have the adrenal rushes that you post about although have to say benzo helped me. I am not on meds currently other than klonopin (generic) but I take some supplements and motherwort when I get high bp's and tachy. H1's and H2's, have you tried them? my adrenal issues got better, as well as other neuro symptoms tinnitus and hot/cold/tingling/numb sensations.

[yogini]

Altruism, we are all so different. We rely on other patients for information because our doctors don't know a lot. However, for something like this, I would only believe it if it were in a medical article or from another source with citations. You'll note on the Dinet page everything is cited and that is for a reason. Anything else is just someone's opinion and people who aren't doctors (myself included) won't get it exactly right. It seems like the person who wrote this is trying to be helpful, but not sure how they came up with this. I would assume it ISN'T true unless you find another article on this!

[Guest Alex]

Hi Lucy,

I've browsed a bit through the website you posted above, and while I can only admire the person who put all that together, I am a bit skeptical when it comes to the accuracy of the info you have quoted.

I've spent a lot of time researching this condition (I recently posted here on dinet a list of over 100 medical articles for further reference) and even though I haven't read all those articles, I've never heard about "combination POTS".

Also, there are people who have hyper POTS and EDS - I don't want to put anyone in the spotlight by mistake, but the 2 conditions do not exclude one another.

Like Yogini said, I'd just assume the info there is not 100% reliable.

Best,

Alex

[MomtoGiuliana]

There are some published medical articles on POTS that you might want to review (if you haven't). Unfortunately DINET does not maintain an exhaustive database at this time, but you might do a search to find others' links to these. I have one I can e-mail to you if you PM me with your e-mail address.

Here is a recent post:

http://forums.dinet.org/index.php?/topic/22108-collection-of-articles/page__hl__%2Barticles+%2Bon+%2Bpots

I think you need consider holding on to the fact that most POTS patients seem to see good improvement over time. This has been documented in numerous journals by physicians who treats POTS patients. That does not mean that POTS patients don't have relapses or that we all get completely well (of course). Some people are disabled for many years.

Hopefully soon there will be a much better understanding of what this is and how to treat it so that everyone can be better.

That said, you have every reason to expect improvement. There are many effective treatments to try--it may take awhile to find the treatment or combination that works for you, and/or it may simply take time for your body to heal.

[peregrine]

With other folks here. I actually have what's described above - something that seems to have features of both hyperPOTS and PD/pooling, and I do have joint hypermobility syndrome. However, when my autonomic nervous system neurologist (who has published herself and does dysautonomia research) saw the test results - the rapid response to the tilt table test, the very obvious pooling, and the wildly fluctuating blood pressure - she was very surprised and described it as "an odd type" - so I assume that if it were common or found in the literature that she would have responded differently.

Personally, I have responded well to things that tend to treat hyperPOTS (clonidine) and general things (beta blockers), but I also do best with water, salt, and compression; I haven't tried Florinef because I retain salt well enough, and the neurologists haven't wanted to try midodrine because my issues seem to be more than "just" pooling/venous dilation. *shrug*

[cmreber]

I haven't heard about combination POTS. I do have to say that mine doesn't seem to fit in just one criteria. When I first got sick two years ago, I passed out twice, which happened to be the only two times I've ever actually passed out with this. When I first went into the ER, my heart rate was very high upon standing, but my BP dropped. I was admitted because they caught a weird rhythm on the heart rate monitor, and then while in the hospital, both my heart rate and BP would be normal while in bed and then increase insanely high upon standing. I will never forget the look on my RN's face when he saw the BP go up so high along with the HR lol. But then, a couple months later, when I finally went to a specialist in Stanford, he diagnosed me because my HR increased and BP tanked while standing. For a long while after that, my BP would drop like crazy if I stood for any length of time and I would get pre-syncope really bad. But then I went to Mayo Clinic a few months ago, and the TTT showed BOTH my HR and BP increasing drastically... Not sure why, but my POTS seems to flip flop almost in cycles??? Beta blockers have really seemed to help though, along with increased salt and fluids in my diet, and exercise. I also have joint hypermobility and blood pooling issues.