sue1234 Posted January 2, 2015 Report Share Posted January 2, 2015 I thought this article was really interesting, in relation to the patient having hyperPOTS. I have it, also, so can relate. I think I'm going to ask my doctor if I can try Losartan.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4142820/I have not specifically looked at my body(skin) while I get in my worst "flares", but next time I will have to. Everything he explained about blood flow when upright makes a lot of sense in what probably happens to me, in the fact that my hands and feet swell due to venodilation and constriction of the arteries. I would LOVE to have that stopped! I also have Raynauds during any temps below 70F, and suppose that is linked as well. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 2, 2015 Report Share Posted January 2, 2015 Wow, Sue! Great find! I have several of the mentioned dermatological symptoms but I've never seen any scientific documentation linking it all to POTS until this article. I actually took pics of livedo reticularis that appeared on my thighs a couple weeks ago so I can show the docs during upcoming appointments. I've asked on here before if others experience such strange rashes, especially the LR which I can only find as related to cold or lupus. I haven't ever gotten much of a response from our members. I wonder how prevalent these dermatological symptoms are among us and if this is another set of symptoms that is highly dependent on u drying cause. Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 2, 2015 Report Share Posted January 2, 2015 Thanks a lot for this article, Sue!!I have had almost all of these dermatological symptoms, and - no wonder! - most of them now dramatically improve or even completely vanish parallel to my recent process of recovery!Wishing you much success with looking at your skin signs and getting something out of it that leads to improvement for you!! Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted January 3, 2015 Report Share Posted January 3, 2015 That is a really good article. I definitely get the red patches on my face, neck, and chest. Quote Link to comment Share on other sites More sharing options...
corina Posted January 3, 2015 Report Share Posted January 3, 2015 Interesting articel, thanks for sharing Sue! Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 4, 2015 Report Share Posted January 4, 2015 Interesting. Quote Link to comment Share on other sites More sharing options...
issie Posted January 4, 2015 Report Share Posted January 4, 2015 This article describes a perfect description of a mast cell degranulation episode. The treatment in a severe response that may affect the heart (called Konuis Syndrome) is treated with nitroglycerin and allergy meds. I'm this subset type and it describes my responses perfectly. I don't agree with the suggested treatments however. If you notice it talked about this subset as being vasoconstricted and a need to vasodilate. This is true for me. But, there is a fine line as to how much.My doc feels with my known biofilm with pathogens problem - the biofilm adheres to the vein walls and narrows them down and also interferes with their ability to expand and contract properly. Addressing the immune system and breaking down this biofilm and what it houses is my best defense. This has been my best direction of anything I've tried. And I have tried it all. I tried the Lorsartan too. With already having low aldosterone and renin levels, lowering them more made me feel a whole lot worse. As did trying to expand volume with salt. Not to mention how hard that is on the kidneys and veins themselves. And vasoconstricting with already too vasoconstricted veins, with meds and constriction. Was not good and caused more problems with neuropathy in already damaged nerves in my legs and feet. And lowering NE, which is our bodies compensation to try to get blood to our heart and head through already too narrow and dysfunctional veins - is so wrong. Our bodies do this to try to save us. Yes, it's uncomfortable. Yes tachy is scary. But it's necessary until the core problem is fixed. The best thing I've done is work on the immune system and inflammation. You can also change your diet and work on things you can change. For me it works. I don't think there is a magic pill, I believe it takes lifestyle change and with time you may see improvement. I have!!!Issie Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 4, 2015 Report Share Posted January 4, 2015 Btw issie - did you ever try midodrine and did it help you...?I am so glad to hear you are on the road to recovery! - I am too, but in contrast to you, I really don't have the least idea WHY I am improving (right now).Best wishes!! Quote Link to comment Share on other sites More sharing options...
Nymph Posted January 4, 2015 Report Share Posted January 4, 2015 Fascinating! I get most of those symptoms. I frequently get the red streaks on my neck after showering. I thought it was due to an allergy. I bet it's due to the heat/standing. I will save this one. Quote Link to comment Share on other sites More sharing options...
issie Posted January 4, 2015 Report Share Posted January 4, 2015 Btw issie - did you ever try midodrine and did it help you...?I am so glad to hear you are on the road to recovery! - I am too, but in contrast to you, I really don't have the least idea WHY I am improving (right now).Best wishes!!Yes. As I said earlier - I've tried it all. That was absolutely the WORST thing I EVER tried. I can not vasoconstrict my veins. That compounds all the problems. If anything I vasodilate. There are different subsets of POTS people. We can not all be treated the same way. And some things suggested by docs I question for ANY of us POTS people. Issie Quote Link to comment Share on other sites More sharing options...
issie Posted January 4, 2015 Report Share Posted January 4, 2015 Fascinating! I get most of those symptoms. I frequently get the red streaks on my neck after showering. I thought it was due to an allergy. I bet it's due to the heat/standing. I will save this one.Likely the hot water hits you there and heat vasodilates. Issie Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 5, 2015 Report Share Posted January 5, 2015 Btw issie - did you ever try midodrine and did it help you...?I am so glad to hear you are on the road to recovery! - I am too, but in contrast to you, I really don't have the least idea WHY I am improving (right now).Best wishes!!Yes. As I said earlier - I've tried it all. That was absolutely the WORST thing I EVER tried. I can not vasoconstrict my veins. That compounds all the problems. If anything I vasodilate. There are different subsets of POTS people. We can not all be treated the same way. And some things suggested by docs I question for ANY of us POTS people. IssieThen I guess clonidine could have helped your symptoms? It is a vasodilator. Quote Link to comment Share on other sites More sharing options...
issie Posted January 6, 2015 Report Share Posted January 6, 2015 Then I guess clonidine could have helped your symptoms? It is a vasodilator._________________________________________I used it for a little while. But got really tired of being tired. I also started having really bad edema while on it and thats when my kidney function started going south. I think the tachy helps with the blood flow issues. Something has to pump our blood upwards, in order to keep it from pooling. That may be why, my subset type finds, when we walk our heart rate can decrease. We have the muscles in our legs helping our heart to pump the blood so our heart can slow down. Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 6, 2015 Report Share Posted January 6, 2015 Hi Issie,I also could always decrease my HR when I was walking, obviously due to the stronger working muscle pump! However, we seem to be totally different types - clonidine (vasodilator) made me as bad as I was never in my life, midodrine (vasoconstrictor) helped me a little bit... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 20, 2015 Report Share Posted August 20, 2015 It is possible that you had a bad reaction to midodrine because your alpha 1 receptors were super sensitive from reduction reception of norepinephrine like a depression patient finds when they start an SSRI - acute worsening of symptoms until the receptors normalise. Just a thought. Quote Link to comment Share on other sites More sharing options...
TCP Posted August 21, 2015 Report Share Posted August 21, 2015 Great find! I flush and have patchy redness on my chest neck and head. Quote Link to comment Share on other sites More sharing options...
Lenna Posted September 6, 2015 Report Share Posted September 6, 2015 I haven't been on this site for a long time, because my son is about 85% recovered from POTS. But I logged on today and saw this post from last January. Losartan (or rather, the brand Cozaar) gave my son his life back. He is someone who is too vasoconstricted, so meds like Midodrine were the worst thing he could take. It took years to figure that out, and cost him his high school years, but I'm happy to say that he is now a Phi Betta Kappa college senior! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 6, 2015 Report Share Posted September 6, 2015 Lenna, thank you for letting us know of the remarkable progress he's made. It's so nice to read that he's doing so well, thank you for sharing his medication experiences and update with us! Sarah Quote Link to comment Share on other sites More sharing options...
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