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I'm not sure i actually have POTS


kalamazoo
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So I was diagnosed with hyper POTS years ago, since then my symptoms have changed but I've never had low blood pressure and when I exert myself even a little bit my blood pressure gets crazy high, and I think that's what makes my heart race so much and why I get so winded. I do get the throbbing head when I stand up but I don't think it's because of low blood pressure, but high instead. I also have this very unique thing I've never found anyone else who has which is where my blood vessel dilate to insane amounts that its like my veins are one fire. They protrude out of my skin and my hands and feet and sometime face get extremely hot and flushes. I was diagnosed with erythromelelgia years ago but I don't have the same symptoms. I'm kind of going crazy the last few weeks as my symptoms have greatly been changing and now I'm in pain almost all of the time in my legs. I'm kind of not sure where to go from here. The only thing that has been consistent on my blood work is elevated c reactive protein which indicated inflammation somewhere, but they don't know where. I'm half venting and half looking for advice on what I should do =/

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My story is very different from yours, but I can completely relate to your feelings. I'm not sure I have POTS either... it seems to be some other kind of even harder to diagnose autonomic issue. It's extremely frustrating... no one really seems that motivated to figure it out and I am lucky to even get treated with "band-aid" remedies. 

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Hi Kalamazoo!

My daughter has erythromelalgia, too, and her symptoms sound like yours.  It's not a common thing, but it does have an autonomic component to it.  Does yours get worse at night?  My daughter's is horribly painful, like someone is lighting her on fire every night.  The pain has been so bad that it is extremely hard to keep her conscious.  She takes a lot of pain meds to be able to even remotely cope with it.  She is also in the process of being diagnosed with a Chiari malformation and craniocervical instability (most likely atlantoaxial instability).  Those two can be causes of EM.  Has anyone looked into Chiari for you? 

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Dizzy, i used to have actual EM, so my extremeties would get red and hot to the touch. That rarely happens now its just my veins but they knly cause me pain if im hot. I used to have issues at night too and used to have to sleep with a damp towel over my legs and a fan in them so i could stay cold. It was really horrible. I'm so sorry for your daughter that sounds awful. At night time now i only sometimes get like a full feeling, so my knees feel full of blood if that makes sense. Hard to explain but then i get restless leg syndrome symptoms too.

And yes pots is hyper when your blood pressure goes high but mine isn't really affected by posture. I feel horrible regardless of I'm upright or not, my bloodpressure and heart rate don't fluctuate very much in that regard.  But they did not test my levels during my ttt.

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  • 2 weeks later...

Hello--haven't been here in years--had POTS for decade plus--and erythromelalgia hit me last October, I had a grasp on POTS, but I have no answer for EM. Kalamzaoo did anything hep for you?

And I also get the "dilate" state and my veins pop out. But it comes with this horrible feeling.

Dizzy girls, so sad.....I bet your daughter is so strong. Does being in extreme cold help her? If im in cold where its numbing it really helps me..

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I have the same issue as stated above. I live in alaska and if im outside for too long when i come inside my extremeties are on fire and they burn from the sudden temperature change then they go from ice cold to very warm and dilated in such an uncomfortable way. I dont drink warm liquids, eat hot food etc. If i get hot my hr immediately goes up to at least 150. I used to have really bad EM where my extremeties would be red hot, now its more just my veins and slight redness but not like it was before where my legs would be beat red. I'm not sure what help, a lot of years id say of lifestyle changes essentially. I also became vegan and gluten free, i eat very small meals and drink ice cold water all day to helo regulate my core temperature. I can't stand for too long and usually wear flip flops. Never tried medicine for it because doctors dismiss it completely despite it being my worse symptom. Sometimes i "flare" so i have to keep my arms above my head and run them over cold water bevause my veins get too "full" and it feels like they'regoing to explode

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I'm so sorry to hear what you're going through. I have POTS and sometimes get something similar. My temperature jumps around a lot, but when I get too hot (usually summer or just after coming inside in winter), my hands and feet turn bright red, the veins stick out and I feel like I'm burning from the inside out; it feels almost like there's too much circulation. Thankfully it's fairly mild and elevating the offending hand or foot and running it under cold water is usually enough to take the edge off. I dress in layers and always carry an ice pack or ice water with me.

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You don't want to live here, lol. Most of the people who live here don't even want to live here. I'm actually moving to Seattle at the end of this year so I can see a specialist at UW thankfully. The doctors here are worthless. I literally mean worthless. I got my first TTT here because I brought my cardiologist a pamphlet on POTS and the TTT and he said sure, but had no idea about it prior. I got my diagnosis of insulin resistance because I demanded a glucose tolerance test, not because it was suggested. I basically do all the research for everything. Majority of people who live here out source their medical needs to Seattle because the health care is so poor, not to mention the average prices are 10x that of the lower 48. It's insane.

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While I sometimes get these episodes, usually my core is too warm and my extremities are almost numb, so layers and thick gloves have been the way to go (for me at least). Are you too warm year round or do you get periods of being too cold too?

Winter is also nice because you can just grab snow from outside or stick your hands in a snowbank.

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I'm either really cold, fingers almost turn blue, or really hot and my hands are warm and puffy to the touch. I sometimes feel ok in between but it doesn't last long. I used to wear flip flops during the winter actually for years in the snow. I haven't owned a real jacket in years and I can wear mittens for about 15 minutes before my hands get too hot and turn red.  I take showers with warm and cold temperatures or my feet and knees swell. I can't take baths, etc etc lol. 

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I'll join the club -- Buffalo is no fun, either!  I have Raynaud's and my extremities feel numb and tingly most of the time. Kind of like when your foot falls asleep and you have to shake them to wake up? Here is a pic of how red my feet can get, my ears burn also. This has been discussed in past threads also.  There is a medication rxed for pots that can help with temperature regulation, mestinon. This is a comment symptom in our community unfortunately :(

IMG_20170301_141739.jpg

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I've never had my feet turn red like that, but like Sarah, my feet have had that pins and needles sensation non stop since my hyper pots kicked in.  A little bit in my hands too.

Kal, your condition sounds brutal.  Im curious if your doctors have checked you for MCAS?  

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