Raynaud's and POTS - what helps?

[Pistol]

I have HPOTS and Raynaud's syndrome  https://medical-dictionary.thefreedictionary.com/Raynauds and currently am experiencing worsening of vasoconstriction in my feet triggered by a POTS flare. My feet are so bad that they are numb, and always ice cold. I have been on Diltiazem for this for ages but also added Nitro patch for this current flare. I am wearing thick socks ( despite the summer heat ), use heating pads and hot foot baths but it does not seem to be enough to keep them warmed up. 

Does anyone have any experience with Raynaud's during a POTS flare, or any suggestions for how to treat this? 

 

 

 

[Guest KiminOrlando]

If you find out, let me know. My doctors just dismiss it as an inconvenience. 

[POTSius]

I get very cold hands/feet/ears

I do not think I have Raynaud's though as my cold extremities are not episodic, but pretty much constant every day for most of the day. (From what I have read, Raynaud's is episodic in nature)

The one thing that really helped with this for me was prazosin. This makes sense as prazosin is an alpha blocker and alpha adrenergic constriction is a fairly plausible explanation for how hyperadrenergic POTS could lead to cold extremities.

but it worsened my fatigue and GI issues so I stopped it

Hope this helps

 

[Pistol]

Thanks @POTSius 😙

[TigerLily]

I just orderd a heating pad to wrap my feet with. They are getting so cold they hurt. 

[Wendy Ide]

I was watching a naturopath on YouTube the other day and she said for cold feet to take old sheet/t-towel and fold into several layers (4) - a couple inches longer than your feet-drizzle olive oil on the cloth and sprinkle cayenne pepper on top of oil. Put you foot on top of this and wrap up in plastic. Tape if needed then put a sock on. 

I did this and it REALLY MADE MY FEET TOO WARM.  Had to remove socks second night. Kinda messy but worth a try. Her name is Barbara O’Neill from Australia. 

[Pistol]

@Wendy Ide - thanks for your response. I have heard of Cayenne pepper being very useful for cold feet but have never actually tried it. It is supposed to act as an irritant and therefore dilates the vessels. I will give it a try!

[DADofPotsSon]

I have had Raynauds Syndrome for more than 20 years.  I really love the outdoors and even in the winter, though it is extremely painful.  I am affected in both fingers and toes.   I have found by experimenting on where to put the heat packets that I can spend a great deal of time out doors.  I have found that putting the heat packets on the fingers and toes did not help that much, but by putting them on the hand near the palm or in the middle of the feet which worked much better.  My youngest sister has the same problem and she said she heats her car with the lower level and mid level vents on in the winter so she can alternate putting her hands up by the vents.  I buy my vehicles with heated steering wheels, and is that a very nice option.  They heat up real fast even in an ice cold car/truck.  I do not have problems in the spring, summer, or fall.  Of the 5 children only my youngest sister and myself have Raynauds Syndrome, and we got if from our paternal grandmother who had a lot of H-EDS problems including postpartum POTS immediately after my dads birth for about 3.5 years.  Dad had Raunauds in his toes only, and I have a 3rd cousin whom I know very well and he has it in his toes too all his life!