A couple questions

[Ginger_]

Hello all! I’m fairly new to the world of POTS.  I started to have issues back in December, and in July is when my cardiologist finally said he thinks it is POTS and started treating me as such, leading to much improvement. I just have a couple questions :’)

is leg pain in the calves/ankles normal? Unless I do something strenuous I formerly wouldn’t have this, but I find lately after a normal day my calves are tight for several days at times.  Can pots lead to overall joint pain? 
 

Can caffeine affect you at times but not always? I was sitting around for a Bible study last night, totally relaxed enjoying the discussion, and I went into tachycardia (100-115bpm but symptomatic with cold hands and feet, numbness in hands and feet, and sweating on my hands) for 30 minutes or so, then it subsided, then came back upon standing and moving around.  Squeezing my calves was what ended up helping in the end.  I had had some iced tea before going with a mild amount of caffeine, but I’ve been perfectly fine with the same tea before.  Can caffeine intolerance come and go? I’m wondering if it could also be that it was paired with pizza which is higher in carbs.
 

 

[Pistol]

1 hour ago, Ginger_ said:

Can pots lead to overall joint pain? 

Hello @Ginger_ it did for me. I became extremely symptomatic with HPOTS in 2009, and at the exact same time I started to notice ALL of my joints hurting, mostly elbows/knees/shoulders/wrists/ankles. I was tested for Autoimmune issues several times - always negative until last year when I had a severe immune reaction to COVID, leading to rheumatic immune response. According to current research ( and according to Dr Grubb ) many POTS cases are related to auto-inflammatory ( not auto-immune ) issues. 

 

1 hour ago, Ginger_ said:

I went into tachycardia (100-115bpm but symptomatic with cold hands and feet, numbness in hands and feet, and sweating on my hands) for 30 minutes or so

This is what happens to me ( and is not uncommon for HPOTS ) when something triggers me and all of the vessels constrict due to an exaggerated SNS response ( too much norepinephrine ). Caffeine, prolonged sitting and a high-carb meal ( all of which applied to you in the event you mention in your post ) will likely trigger similar symptoms as what you describe in me as well. 

If you suspect POTS or HPOTS a TTT with neurotransmitter-testing may shed a light on a diagnosis. 

[Ginger_]

1 hour ago, Pistol said:

This is what happens to me ( and is not uncommon for HPOTS ) when something triggers me and all of the vessels constrict due to an exaggerated SNS response ( too much norepinephrine ). Caffeine, prolonged sitting and a high-carb meal ( all of which applied to you in the event you mention in your post ) will likely trigger similar symptoms as what you describe in me as well. 

Good to know! I’m currently in the phase of trying to figure out what my triggers are.  Seems like I can’t have all three factors together. 

 

2 hours ago, Pistol said:

If you suspect POTS or HPOTS a TTT with neurotransmitter-testing may shed a light on a diagnosis. 

My doctor didn’t want to do a TTT as he doesn’t see them as 100% reliable.  He was leaning towards it being POTS, as was I, and he had me greatly increase my sodium, my water intake was already what he was going to recommend.  So far I’ve responded well, it’s maybe once or twice a week now I’m having a bad day.

thank you for your help, one other question I have is how do you figure out if it’s regular POTS, HPOTS, or another sub-division?  There doesn’t seem to be as much information out there on the sub categories as there are for POTS as a whole.

[Pistol]

8 hours ago, Ginger_ said:

one other question I have is how do you figure out if it’s regular POTS, HPOTS, or another sub-division?

Well, that is a big question that most physicians also struggle with. Most POTS types ( as well as other dysautonomias, such as OH and NCS ) can be found during a TTT or even with several sets of orthostatic vital sign measurements properly done in a doctor's office. In general, if you have a sustained increase in HR of 30 BPM or above 120 BPM within the first 10 minutes of being upright and in the absence of a rise or drop in BP in addition to symptoms it would be POTS. HPOTS can be diagnosed by easuring neurotransmitters, such as NNE, during resting and standing states. 

HPOTS is trickier to diagnose , since it presents different from POTS and with some major differences in symptoms. The most common POTS types are caused by a lack of vaso constriction, meaning due to a faulty ANS response the vessels stay dilated and the blood cannot be pumped up to the organs when standing. That causes blood pooling, brain fog, fatigue, tachycardia ( in an attempt to pump blood to the head ) and even syncope or feeling lightheaded and dizzy, among other symptoms. 

In HPOTS the cause is that the ANS erroneously dumps too much norepinephrine to get the blood pumped to the brain. This will cause a "Fight-or-Flight" reaction, blood vessels constrict, tachycardia occurs, BP goes up ... along with most other symptoms that POTS patients experience. Here, however, the mechanism is not dilation of vessels but the excessive constriction also causes the blood from being able to get to the brain, hence we have similar symptoms but a completely different mechanism. It is important to understand that cold hands and feet ( for me it is even that the tip of my nose gets cold and lips can turn white or blue ), tremors, chest pain, increased yawning ( an attempt to bring more oxygen to the brain ) and the aforementioned high BP are present during triggered events. In my case these events would eventually lead to syncope and even seizures from not enough blood reaching the brain. 

Obviously you would not treat these different types with the same medications, so there are differences in how to treat them. Beta blockers can be helpful in both cases, but in HPOTS medications like calcium channel blockers ( vasodilators ) or meds to reduce BP ( like clonidine or guanfacine amongst others ) can help - but would be contraindicated in other POTS forms. There meds that help the vessels to constrict or increase BP ( like Midodrine or Fludro ) can be helpful. 

[Catbrat]

I have found that my legs feel heavy,and tired,and achy after sitting for extended periods of time and or walking for extended periods of time. I would suggest  seeing a pots specialist to determine  specific type. When I saw my specialist for initial visit there was a lot of paper work and question,your answers  to the questions about your symptoms help determine which test you need to diagnose your type.