Tammy Posted May 3, 2010 Report Share Posted May 3, 2010 Ive been thinking about this. When i was young every time i got the flu or sickness I would feel 'spaced out' for a few days which I thoght was normal. Turns out that its not normal at all. Perhaps now I have Ankyoosing Spond Im inflammed all the time and this brings on POTS all the time as well??? Mmm.Oh how interesting. My neice gets very spacey for a few days after she has the flu and her blood pressure gets really low. She's young and healthy, so hopefully she won't develop POTS as she gets older. She is the one that takes care of me when I'm too sick to myself. I'll have to read up on AS as I have never heard of it before. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 4, 2010 Author Report Share Posted May 4, 2010 Yeah i hope that doesnt mean she'll get it.Ankylosing Spond is inflammation of the spine but it also makes you feel like you have the flu all the time. Not much fun. hard to see for me where it finishes and POTs starts sometimes. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 5, 2013 Author Report Share Posted March 5, 2013 The AS gets bad, and then seems like it's gone for a while. Not sure if that is what happens to you? I got POTS and AS at the same time and the POTS doesn't go away. I have high catacholamines (800+) sitting, but I also have some blood pooling and some kind of small capillary leakage. My legs get very hot and red and I get flushing/intense heat with the shaking and sweating. yeah I now get this as well.Also found about four more Ank Spond and POTS / OI patients. Mestinon was helpful but not a magic bullet... Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 6, 2013 Report Share Posted March 6, 2013 Think it's interesting how TNF alpha keeps showing up in the literature both for AS and ME/CFS research- which keeps having a lot of overlap with POTS what with all the attention being given to the ANS now.I seem to remember reading early on that Grubb recommended Bupropion as a first line treatment for POTS patients which besides being a norepi/dopamine affecting drug, also has been found to have fairly strong TNF alpha blocking properties. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 6, 2013 Author Report Share Posted March 6, 2013 interesting! Quote Link to comment Share on other sites More sharing options...
issie Posted April 8, 2013 Report Share Posted April 8, 2013 Interesting the first part of this discussion that happened years ago and people noticing their jugular veins extending when bad with POTS. In light of the info starting to come out about CCVSI. But, if the jugular veins are extending - wouldn't they be naturally pressing on the vagus nerve - which would be the goal, wouldn't it with this treatment? To expand the veins to apply pressure on the vagus nerve. But, they could also be extending and there be a clogging effect and the blood may be too sludgy and isn't flowing properly, causing a ballooning out of the veins. Just throwing ideas out there. Not really sure. If there is a vein malfunction like with the valves and possible issue with the directional flow of blood - that might explain an awful lot. Like with varicose veins in the legs - the valves don't close off properly causing a ballooning out, swelling and causing a backward flow of the blood and it not properly going in the right direction. Mechanically, this would make sense. Maybe, working on the health of the veins and the fluidity of the blood might make a difference.Interesting the connections with AS and autoimmune - seems there must be some connection here. Someone on the thread suggested LDN - that would probably have less side effects then IVIG that carries the same warnings as a blood transfusion, because it's taken from plasma from hundreds of donors. That being said - for some reason LDN really helped my pain - an awful lot. But, threw me into a bad depression. I've been off it for almost a week now and my depression has lifted. So, it was that probably causing it. I was only on .5 a night. So, it was a very, very low dose. (I've also had a bit of a problem with another med I'm on so - it could have just been the combination that was the problem for me.)As for ridges in the fingernails. I've been on GastroCrom and doing herbals for autoimmune system and I hardly have ridges in my nails any more and I've got moons on nearly every finger now. I think my body is starting to utilize the foods I eat and I'm getting the nutrients from what I'm eating. I definitely believe that autoimmune dysfunction has something to do with all of this.I know this has been bumped recently - but, was just looking into it and found it again. Issie Quote Link to comment Share on other sites More sharing options...
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