comfortzone Posted July 2, 2012 Report Share Posted July 2, 2012 I do see a doctor for these symptoms - but I never get a clear picture of what it is that's causing them and should I ever expect them to go away?I am confused about a few things - maybe you can help? One is at age 55 menopause was done and overwith last year. So I wonder if anyone here gets super sweaty all throughout the day - the kind that dampens your clothes, drips off your eyebrows and nose - with light activity and sometimes at rest....post menopausal?Is this something worthy of some sort of workup? I don't know if it's cardiac, hormonal, dysautonomia, EDS related, or borderline DM.... I have never received an answer as to why sweat pours off me - it gets embarrasing - and prior to this - which seems to be worsening (yet it is super hot outside) I was one who didn't sweat say before age 50 or wasn't aware that I sweat... Sweat test was normal...Then there is blood pressure with a high baseline - that even when on three meds - dyazide, clonidine and propranolol - I still get highs in the morning of say 140's/105 ... and sometimes that whole day is high in spite of medicine - other days it'll dip to absolutely normal - and yet some days like today - I sweat a lot and the b/p nosedives - not dangerous but say 88/73..... tonight with over 2 liters of fluid in today it's about 100/70.... hr about 66.New too is chest pain. Happened a few weeks ago lasting ten minutes - then the last few weeks I get flashes of chest pain nearly daily or multiple times a day. I simply didn't think it was cardiac and have had good cardiac testing done in a prior ER visit last year - so I saved the money and didn't go to the ER against my better judgement - was fine - but now I get the pain daily - is this just EDS? Who knows. It lasts only a few seconds and in a flash it's gone as fast as it came...I have SFN that the doc believes is borderline DM related - yet I have generalized joint hypermobility and those folks or we folks get small fiber neuropathy often with normal sugars...The doctor asked me if I get flushing - yes I do. I get what feels like hot flashes and I get big rushes of blood I guess with the first movement of the day in bed in the morning - like a gush in my chest/abdomen... and then randomly in a day might have it happen once or twice... sometimes hardly at all in a week... but it does happen,...regularly post menopausalI hate to sound so dumb - but after a year and a half of lots of labs and testing - I still don't know what the heck I have nor why laying down is the only real reliever of my chronic widespread pain syndrome - I guess it's a syndrome - who knows ... I have pain with movement - my shoulders sublux and my joints hyperextend all the time. I get arthritis pain and joint pain and foot and elbow and neck pain - and back spasmy pain - and pain with standing above all...I was supposed to see Dr. Grubb - but somehow confusion ensued and I never got the appt., even though I sent records from my EDS doctor.... Yet in reading the article nicely shared here - sounds like there's nothing anyone can do for hypertensive people as myself 'cept treat the hypertension - the lows in b/p you just deal with? Is this just 'life' and I need to not ask so many questions - or do I need to demand answers in a nice way -- demand new treatment modalities in a nice way - demand further testing and referrals to endocrinology and cardiology? Is this just what happens when you get older and carry extra weight on your body? I know - too many questions - I just don't know what is important anymore and what isn't .... Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted July 2, 2012 Report Share Posted July 2, 2012 It sounds as if you likely have hyperPOTS. Have you had supine and upright catecholamines done? How much clonidine do you take and do you use the pill or patch form? The patch should give you more even blood pressure control. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted July 2, 2012 Author Report Share Posted July 2, 2012 Thanks - yes I had the catecholamines and they went from 200 to about 700 with standing in a sharp rise.... I take .1mg Clonidine in the a.m. and .2mg Clonidine in the evening...I will ask the doc about a patch - never thought of that before... Isn't POTS one of those dx's where you must have a hike in pulse or heart rate over 30 bpm with standing? I guess I thought I didn't have POTS as this neuro never said I had it. But I would totally agree that in my life I've always run at a high adrenergic state -- runs of PAT, PAC's and short runs of SVT ... heart rate when not on meds hangs around 100 at rest and even with meds if in pain it's over 100 at rest... other times the meds override pain and it's been in the 60's...So does it mean I cannot have hyperadrenergic POTS because my change in HR is not 30 or more? Or are their gradations of this stuff on a continuum - where you can fall all along this line in different spots - yet still be hyperadrenergic?I am reluctant to have a third set of autonomic testing as nothing notable comes up... the breathing, the tilt, valsalva, sweat -- none of it really shows the pooling I feel I have in abdomen and legs - I'm getting a memory work up soon as brain fog doesn't begin to describe what many of my days are with forgetfulness etc...Do you think I should ask Neuro for a cardiology consult about my misbehaving b/p? Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted July 2, 2012 Report Share Posted July 2, 2012 You could consider making an appt with someone like dr Grubb but in the (long) meantime, there is a good chance you will see some evening out of your BP with the clonidine patch, start at 0.1 mg every 5-7 days. Also, if you do have hyperPOTS which seems likely given your sxs, BP and HR lability and the fact that you have EDS, dyazide may be making you worse since many people with POTS have at least some degree of hypovolemia. And hypovolemia can in turn cause an increase in catecholamines. The sweating a lot has definitely been described with hyperadrenergic states...If it is new, associated with fever or weight loss, however, then you should be evaluated for it. Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 2, 2012 Report Share Posted July 2, 2012 Nowwhat- good to see you back on the forum! Sorry you're still struggling though. Did you get a chance to read the transcript that ChristyD posted from Dr. Afrin talking about Mast Cell Activation Disease? It has a lot of info about stuff you were mentioning like the flushing, sweating, chest pain, SFN etc. You might find it interesting and give you some more ideas to look into. Here's the link in case you missed her thread.http://www.mastocyto...ut%20slides.pdf Quote Link to comment Share on other sites More sharing options...
comfortzone Posted July 3, 2012 Author Report Share Posted July 3, 2012 Hi all...Thanks for writing ... Okay I've heard/read about the mast cell stuff - dunno what to think - surely no one has thought of it that treats me. Thanks for the link chaos....,I'd wondered about the dyazide - as well - and I've tried going off it before - but HTN is so crazy bad in the morning.... I take medicine daily for pain - and with the sweating and such it's so hard to keep up fluids to combat constipation - let alone enough to feel vital and alive - but I'll ask the doc about a revamp of my program perhaps... Using a patch might help...I hate to override the specialist - but I am going to have to go to my primary I guess and just run this by her -- maybe run it by the specialists nurse once again - .3mg of Clonidine per day seems quite a bit - my b/p is high and that's not good - chest pain is rarely ever a good sign - just hoping it's not a bad sign - yet who wants to get a work up in the ER when all they care about is 'are you having a heart event now or not'....I'll call the nurse of the dysauto doc now and see if I can get somewhere once again..... Sorta feel like I should be led out to pasture! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 4, 2012 Report Share Posted July 4, 2012 Most doctors say mastcell disorders are quite rare. Dr Afrin and some here think most have them. Ill let you work that out for yourself but its certainly not settled.Also, if you do have hyperPOTS which seems likely given your sxs, BP and HR lability and the fact that you have EDSNot at all infact. Elevated BP can occur in denervation hypersensitivity (neuropathic POTS) (Thankful is an example), Low flow POTS, hypovolumic POTS (either idiopathic or hyporeninism), and perhaps in parasympathetic withdrawal. NET deficiency also comes to mind and the principle symptoms of that were dominated by postural dizziness and syncope rather than sympathetic excess (if you read the study).EDS is associated with inadequate venous return, although some docs claim they see mainly stomach pooling in EDS. EDS is again not associated with true HyperPOTS in any of the literature other than beta 1 supersensitivity which is seen in most POTS patients. That is ofcourse unless you prescribe to Diana Driscoll et al and while there is room for other theories, some have stronger basis than others.And you certainly cant diagnose over the internet. Quote Link to comment Share on other sites More sharing options...
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