roxie Posted January 22, 2013 Report Share Posted January 22, 2013 My ttt last year showed both POTS & NCS. From what I understand not everybody has both, I wonder if I have hyperPOTS, at least sometimes. Can you have hyperPOTS with NCS? Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 22, 2013 Report Share Posted January 22, 2013 I'm not a "true" hyperPOTS. I have been diagnosed with primary neuropathic POTS with a hyperadrenergic component. I also have NCS. This is that combination type POTS that is hard to treat because what you do for one type tends to make the other type worse, or at least that's what my POTS neuro at Mayo has told me. Looking at your signature line we seem to have a lot of similarities- including EDS. I know when I was trying to figure out what "type" POTS I had before I saw specialists, it seemed like I fit into all the categories at least some of the time. Hence it made more sense when I got the diagnosis I did because in fact, I did seem to fit into more than one category. After all, why be a zebra when you can be a zebra with yellow and green stripes with pink and purple polka dots added for fun, right? Quote Link to comment Share on other sites More sharing options...
roxie Posted January 22, 2013 Author Report Share Posted January 22, 2013 Is combo pots considered a viable diagnosis? I know I saw it on that blog but I didn't know if dr's accepted it. If so, I probably have combo pots and am currently swinging towards hyper. Whenever I read Pots articles i feel like i fit all the subtypes too, so yeah. I've been having pretty high bp and that's prompted me retook into hyperPOTS again. But it may also be because i started clonidine, its known for its synergy and with everything I do & take to raise my bp, it figures clonindine would double it. Sad Bc clonidine has taken my hr down more than anything. I'll have to see what my dr says next week Quote Link to comment Share on other sites More sharing options...
kitt Posted January 22, 2013 Report Share Posted January 22, 2013 . Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 22, 2013 Report Share Posted January 22, 2013 To clarify...I should say I have NMH..not NCS because I don't faint. Had recorded BPs of 38/22 on a TTT but didn't pass out.I don't know if "combo POTS" is an official diagnosis. My doc has another name for it but I couldn't remember it when I was trying to respond to your post and that was what came to mind. (I hate brain fog!)Bummer about the clonidine. If you're taking other things to raise your BP, maybe you can explore options with your doctor that would include stopping those things if the clonidine is both lowering your HR and raising your BP? I couldn't tolerate clonidine personally- dropped my BP really low.My understanding (in a very simplistic manner) about how we can have both types is that with the EDS we may have some spotty neuropathy in the body so when the brain sends out signals, they aren't interpreted correctly and the brain therefore doesn't get back the correct feedback, so then it starts dumping extra catecholemines to get a more appropriate response. The problem is then that the areas that aren't affected by the neuropathy over-react because of the excess stimulation. What I don't understand is why we seem to have periods where we swing more toward being "hyper" like you're describing or more toward other symptom sets. If our symptoms are due to neuropathy like the above explanation describes, it seems that should be fairly constant and not variable like you and I both seem to experience. Quote Link to comment Share on other sites More sharing options...
roxie Posted January 23, 2013 Author Report Share Posted January 23, 2013 That does make some sense. I didn't get a lot of time with my dr last yer after all my tests but on the my patient portal thingy it has me listed as having idiopathic peripheral autonomic neuropathy. Plus a million other things, I don't know if that was for a diagnostic code of that I do have some form of nueropathy, its possible. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 23, 2013 Report Share Posted January 23, 2013 Yes that's the same thing I had diagnosed from the Qsart test...idiopathic autonomic neuropathy... Quote Link to comment Share on other sites More sharing options...
issie Posted January 23, 2013 Report Share Posted January 23, 2013 My neuropathy is getting better. Can't explain why - unless my veins are working better. I have less edema in my legs and feet too. I can actually feel the little bumps in my crocs now. (I know they are not very attractive shoes --but, they are comfy and I love them. I have tile floors and have to wear cushioned shoes in the house.) It was a shock to start to be able to feel things with my toes again. I'm actually more stable on my feet, because the feeling is coming back. My endurance is better and I'm able to stay up longer ---still seems that I'm not having the good blood flow to the head - but my legs, feet and arms seem better. Now, if I can get above the heart stuff working better ----I'll be very happy.My POTS is hard to treat because of the same problems as Chaos. Extremes in both directions. (Poor Dr. G ---he has all of us hard cases.) You can't treat the highs because of the lows and vica-versa. If it were one or the other, it wouldn't be so hard. I found that the clonidine leveled out those swings for me. It did however, make me really tired. I got tired of being tired. So, I went off. And things stayed more level - even off. So, I think maybe it reset something.I'm not sure that neuropathy is causing this. I think it's a peripheral problem, but not THE problem. (Just me thinking out loud. )I think that maybe us with EDS, HyperPOTS and MCAS - there is more to our issues. We have our own subset catagory. I just don't think it's completely figured out yet. (Ha! is any subset?) But, maybe some of us are getting closer. I know a bunch of us are looking into alternative type things and going off in different directions. I'm thinking we are on to something.IssieIssie Quote Link to comment Share on other sites More sharing options...
roxie Posted January 23, 2013 Author Report Share Posted January 23, 2013 Thanks Issie. It's like we live on a pendulum. At the dr last week he said we may try to take down the florinef and see what happens. I did a 24 hr bp monitor mon/tues. (you should see those bruises!) and I go see him next week to get the results and see what he wants to do. Im glad your feet are showing some improvement. I have to wear shoes all the time too Bc my feet are so flat and because the tile floors and my house is on concrete. I habe these sketchers sandals. They're ugly but they work! Quote Link to comment Share on other sites More sharing options...
roxie Posted January 23, 2013 Author Report Share Posted January 23, 2013 Chaos, that's really interesting about the QSART. I think I sweat a lot during it. The dr asked me "do you always sweat this much?" Sometimes! I've been trying to look if excessive sweating on the qsart indicates anything but I habe found anything. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted January 23, 2013 Report Share Posted January 23, 2013 Quick question.. My doc. Said I have dysatonomia with pots. He never specified what type I have? He just read my TTT and said I had positive test result?? Is there more testing I should have done? Quote Link to comment Share on other sites More sharing options...
issie Posted January 23, 2013 Report Share Posted January 23, 2013 I did a 24 hr bp monitor mon/tues. (you should see those bruises!) Bananas,I tried to do that test ---but, with the nurse just putting it on me and having it pump up so hard in the time that I was there in the office ---I knew it would cause extreme discomfort and bruises. I discussed the EDS with her and see could see how it hurt when it pumped up and she said I couldn't do the test. She couldn't get in touch with the doctor ---but, said there was no way I could "endure" that test for 24 hours. THANK YOU, SO MUCH ---for not making me do that!!! I could tell it would be awful. Sorry you had to "endure" that, but hope it gives you some answers. I'm sure I would have learned more ---but, didn't think it would be worth it.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted January 23, 2013 Report Share Posted January 23, 2013 Quick question.. My doc. Said I have dysatonomia with pots. He never specified what type I have? He just read my TTT and said I had positive test result?? Is there more testing I should have done?Quick answer ----YESSSSS!!!! LOL Keep reading ---lots of good info here and it takes time to sort out.Issie Quote Link to comment Share on other sites More sharing options...
Akgirl Posted January 25, 2013 Report Share Posted January 25, 2013 Siggggh... Wow this is crazy! My life was so good and now...... So not Thanks!! Quote Link to comment Share on other sites More sharing options...
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