brethor9

Thanks Issie I knew you would come along and straighten me out lol......its the MCAS that is the wild card....because of that meds just don't work the way they should never mind the dysautonomia on top of everything. I asked my specialist to try me on clonidine but he didnt think it was a good idea? he said it was something to do with my possible underlying peripheral neuropathy? if I understand correctly it can affect how the nerves signal to the blood vessels? and that is where my body may be having a problem.....if that makes any sense...... what am I saying? NONE of this makes any sense Bren

good point Naomi! I have totally noticed symptoms that florinef has an effect on and I was never sure why until one of my nurse friend's said its a steroid.....steroids affect all kinds of things...moods, hormones, weight,,,,etc.....I mentioned this to my specialist when I first started it that my chest had grown like 2 sizes and that I was having massive mood swings....he didnt think it was the florinef because it was a small dose but I beg to differ....I think it may also be why I have a hard time tapering off of it ......

Hi Janet I had a hysterectomy in 2008 (34yrs old) I had been experiencing various POTS symptoms for about 1 year prior to my surgery (nothing debilitating at the time).....in my case I went completely downhill about 2 weeks after the procedure....I kept my ovaries(now I wish I didn't ;( think it would have been better just to be on HRT...) but at the time I thought perhaps they had just gone into shock and my gyne would not put me on any type of hormone to help ride it out....from that point forward I continued to get sicker and sicker until I completely went into system malfunction in February 2011....so in my case the surgery did not have a good effect on my POTS....but I cannot say for sure if it would have gone that way regardless if I had the surgery or not? it could have been just coincidence...... your outcome could be completely different......good luck in whatever you decide

funny I was reading an article today on Florinef that said it is almost identical in structure to cortisol? really gets me thinking even more about how this is possibly an endocrine based illness....your article makes me wonder even more? (I was tested in the past and had abnormal cortisol levels but it was never addressed either)

I was thinking more along the lines of renin production.....doesn't one drug (florinef) increase the level and the other ( beta blockers more than alpha) decrease it which affects the alderstone production? also one drug raises BP and the other lowers it...beta's made my blood pooling way worse too... for me personally it was like they cancelled each other's good effects out....just not a good combo for me....but again everyone's system is different

personally I would try the clonidine first at a very, very low dose......I have just started my autistic son on it and so far no issues.....but it really has to be your choice I wish you the best with whichever one you try and crossing my fingers you have no really yucky side effects..... keep us posted Bren

Thanks my twogirls! yeah the a-fib is just one more new annoying symptom ;( I also do have respect for doctors....I am blessed to have my specialists...but I have also dealt for many years with some pretty high end specialists who refuse to think outside of the box when it comes to patient care. Also alot of these clinical studies that are carried out the patients have been chosen and its a very small patient base....I would be happier if they did some papers on long term dysautonomia sufferers and why they are not recovering and Lemons I realize you didnt mean to offend and I really am glad you have had improvement

well I know I had to stop the beta blockers because they were making things much worse pooling wise and irritating the mast cells.....but if you research beta blockers and then florinef and the mechanism....they seem to cancel each other out....off topic but I also read an article today on florinef that basically said it is one component different from cortisol? that perked me up a bit....I wonder how many of us have cortisol issues which lead to adrenal issues? Could be why florinef is really hard for some patients to get off of? I really sometimes wonder if this illness isn't based in endocrinology somehow??

thats weird Mcblonde!..... I have major high catecholamines and yet my specialist put me on florinef and beta but did not like the idea of Clonidine....he suspects my nerves are effecting the constriction/dilation issues and somehow Clonidine adds to that....I forget the whole explanation ......goes to show how treatment can vary so much Bren

yeah I never understood that concept either? I mean I believe beta blockers do the same? so we take florinef to build those levels up but the beta blockers and clonidine cancel those effects....so whats the point? what am I missing? Bren

Doozly....Dr Afrin told me the same about benzos and mast cell. I think that's why they are the only meds that seem to help me.....I always thought it was strange that they helped with so many of my symptoms that technically they shouldnt help....until I found out about the mast cell issues. They definately make a difference for me and I am not stopping anytime soon

so what if someone like me can actually go into anaphylactic shock from exercise does that mean I should just "push through" and ignore the horrible symptoms? I can't even get through a simple saline infusion without feeling like I am dying and having a massive reaction (if you want a visual see my post "scary pots attack after saline infusion") but should I just push through? or stick with it? I remember being nine months pregnant and still exercising 2 hours every night and not having any issues.....this illness can't even compare..... today I just found out I am having episodes of A-Fib do I just push through that with exercise even though the symptoms suck? for me exercise is getting through the day upright....that's more than enough right now .....again I think we have to be really careful about boxing everyone into the same corner...some of us really have tried all the SSRI's/SNRI's, exercise, homepathic, diet, whatever and still do not recover.....it is a wide spectrum illness and as individual as its sufferers.....and we are all not on the same level...what works for some will not work for others just like one chemo cannot cure every cancer...... just my opinion

I didn't know this but one of my doctors told me chronic dehydration can actually cause fluid retention because the body goes into starvation mode. (For me I have almost completely lost my sense of thirst....that signal just doesnt work well any more.) I was told that the more fluid you drink the more the body will let go of the fluids the body is holding onto as it realizes it doesn't need it. For me it might explain why some weeks I am really retaining but dehydrated and other weeks I am about 10 pounds lighter because I am hydrated ......the body is a funny creature

Peace you sound just like me! I have done my damnedest to push through but the body just physically doesn't allow it...period. In my own case; my allergy specialist said I have exercise induced urticaria that if I pushed it could actually turn into full blown anaphylaxis (scary) so in my world it just is not going to happen right now ....**** I am pleased with myself if I manage to get a couple of loads of laundry done lol.... I agree that we need to do our best to move around....but I am running a marathon just doing the basics most days

OK....I think it really needs to be stressed that POTS is only a syndrome made up of various symptoms. Every patient's ANS is affected differently based on what is underlying and causing the symptoms whether it be viral, MCAS, neuropathy, EDS, autoimmune, familial, etc. therefore every patient's treatment and recovery is going to be different. Age is also a factor....younger patients have a higher recovery rate. The subject of being deconditioned is a touchy subject for the group of us who have been suffering and struggling with these symptoms for many years despite being in good shape and pushing through. We are likely the ones with secondary POTS caused by something more complex..... I do truly think it is great for the ones who have been successful with exercise more power to you!..... but thinking that every patient can just push through and exercise and they will be cured is misguided and hurtful to patients who really have tried everything and still struggle....

yep me too! I think it really needs to be stressed that POTS is only a syndrome made up of various symptoms. Every patient's ANS is affected differently based on what is underlying and causing the symptoms whether it be viral, MCAS, neuropathy, EDS, autoimmune, familial, etc. therefore every patient's treatment and recovery is going to be different. Age is also a factor....younger patients have a higher recovery rate. The subject of being deconditioned is a touchy subject for the group of us who have been suffering and struggling with these symptoms for many years despite being in good shape and pushing through. I suspect we are also the group that have a secondary illness causing the POTS symptoms. I think it is sad when we the patients start to believe the hype of some of these ignorant doctors pushing these studies

I am really glad to hear you are all making headway but I am just curious have you all just been diagnosed with primary POTS or secondary POTS? do you have any underlying conditions ie MCAS , neuropathy?

sad thing is if we all were diagnosed with something not rare like "diabetes" this wouldn't even be an issue..... I am sure no one accuses them of anxiety and neurosis.... hard to believe this is what we are getting from top specialists at some of the best hospitals....talk about ignorance

yes same for me! I pushed and pushed through my symptoms for 4 years until I actually landed in hospital and even after I got out I continued to push until my body said very clearly NO MORE!!!....if you won't stop, I will stop you ..... I strongly believe that your body will go into self preservation mode when it has had enough.....I actually have a friend who ended up in a coma due to the exhaustion she caused to her body....scary! ......I was a very go, go, go person before POTS certainly no deconditioning here and even now I am constantly fighting my symptoms to stay upright as long as possible....this article almost implies that we are causing this ie "perceptual issues" what is so perceptual about your legs turning purple?? how is that a perception? either they are purple or not....that's pretty black and white....arrgh!!!

that would be fine if we all had simple POTS and no other dysautonomia symptoms (mast cell, neuropathy, EDS etc)..... and what about people like me whi have exercise induced allergies??? I am getting really tired of the fact that these so called doctors; lump all of us together; do not take into account that most of us were in very good shape and exercising when they were hit with POTS ......so can one of them please explain in a medical article how that happens??? ;( cause that is one explanation i have not heard yet! this crap just really gets my fur up ;(....sorry for the rant...bad night........

Bar none the scariest was the episode I posted about last week after my saline infusion I hope to never experience an episode to that degree ever again. It is a week later and my muscles are still sore. I have yet to find an answer to what caused it........ it was actually similar to yours KOR1212....except I had massive full body muscle contraction.....on the masto site many patients are telling me if you have mast cell issues IV can release histamine.....nasty combo I found out the hard way..... Bren

oh boy yes! all the time.....when the adrenaline is flowing I have the sudden fits of anger....they blow off as fast as they come on....I so hate them because even as I am having a fit in my head I know it is completely not my normal behaviour but in that moment I cannot control it. I apologize a lot....my hubby tries not to take it personally but I am sure there are days he would like to strangle me I would not wish this illness on anyone either.... hang in there Bren

yeah Dizzy I am with you! After my last go around with saline infusion I would rather just stay dehydrated....I do not want to go through another scary episode like that again Bren

I started having more noticeable symptoms a couple years after having a general anesthetic C-section.......about a year after that new onset of symptoms I had a partial hysterectomy with appendectomy....2 weeks after that my system crashed even worse....I was still managing until about 2 years after that I had gallbladder surgery and that was it....total system failure do not pass go! ....I have since yet to fully recover.....( some specialists believe surgeries can activate MCAS I have read....interesting) Bren

yes I experience this often also.....I just figure it is nerve related....