Loss of sweating

[cmep37]

I've always had a problem with excessive sweating - as a teenager during my period I remember having hot flushes where waves of heat would sweep over me and I'd need to change my school uniform as my shirt was completely soaked through.  I have ruined so many clothes with sweat and/or deodorant and been mortified at other people noticing the wet patches on my clothes under my arms, boobs and back .  A few years ago my GP gave me Driclor which helped a lot but I was still aware I had excessive sweating.  Fast forward to the last couple of months and I've been in a really bad flare - vomiting at least once a day, BP very low when standing (the worst I recorded was 62/43 on my monitor), HR consistently over 150BPM when standing and constantly in a grey-out when upright (you know the stage just before you black-out when you get tunnel vision and your ears buzz or ring), massive adrenaline surges all day every day and really bad bradycardia at night (40-44 BPM).  Now normally when I'm like this my hyperhidrosis is awful, I'm dripping with sweat.  This time I'm still getting the waves of heat but absolutely no sweat at all!  We have had the hottest temperatures ever recorded in my area and my family are all sweating like mad but I'm dry as a bone!  Has anyone ever experienced anything like this?

[Pistol]

@cmep37 - I am very surprised that in your condition no one has ordered IV fluids? With your BP and HR you are a definite candidate for it. Even without POTS - daily vomiting and excessive sweating cause dehydration, dehydration causes all of the symptoms you mention ( even in "normal" people ). The treatment for dehydration is IV fluids - if your doc does not know that you may want to go to an ER? I guarantee you that you will feel much, much better after an IV. I used to be in ER or hospital in a state like yours every 6-8 weeks and IV fluids would turn me around every time. 

[cmep37]

I would love to get IV fluids - my GP would be happy to prescribe me IV fluids but in the UK, there is no way that she can.  The district nurse can only give subcutaneous fluids and so that is all my GP can prescribe - I've tried them and they didn't do anything for me as like drinking, I just peed it all out inside an hour!  I don't think I am actually dehydrated as I am drinking at least 3 litres of electrolytes a day and I'm generally managing to keep fluids down, it's solids I'm having a problem with. I've been to the ER numerous times in this sort of condition and because I am not obviously dehydrated and I am able to drink fluids I am just advised to do this - I've stopped going as there is next to no awareness of dysautonomia and when I ask for IV fluids they say there is no reason to give them (my cardiologist won't support me getting them either and he is the POTS "expert" in my area).  My BP and HR are within normal limits when I'm lying down, despite my diagnosis they end up thinking I'm just suffering from anxiety and I end up even worse as the stress of sitting for hours in A&E trying to explain POTS to nurses and junior doctors only lengthens the flare.  It's so frustrating - I am sure IV fluids would help me but I can't get access to them.

[MTRJ75]

I have a lot of weird sweating stuff going on. I've always sweated a bit much, but then a few years after the Sjogren's stuff started, I realized that I stopped sweating. At least in situations where I would normally expect it. Now, I have drenching sweats like you describe, but not necessarily when I'm supposed to. Example: I could go outside in the heat and not sweat, but come back in and then lean over to write something down and all of a sudden I'm drenched in sweat. It seems like I only sweat when my body perceives some kind of mental or physical stress, which includes after meals, if that makes any sense. And it's absolute torture. 

[MikeO]

I have noticed changes as well. I did use to sweat profusely when it got warm out, after eating. Now it is just when i do a physical activity that warrants it but the sweat is minimal. And yes i am hydrated. guess the nurse was right only me and my dog knows it.

[Pistol]

6 hours ago, cmep37 said:

I would love to get IV fluids - my GP would be happy to prescribe me IV fluids but in the UK, there is no way that she can.

I am so sorry - how can that be, since it is a known treatment for POTS flares refractory to meds and oral fluids? It happened to me as well, but that was years ago. Here in the US they mostly know bout POTS flares and IV fluids by now. 

6 hours ago, cmep37 said:

despite my diagnosis they end up thinking I'm just suffering from anxiety and I end up even worse as the stress of sitting for hours in A&E trying to explain POTS to nurses and junior doctors only lengthens the flare. 

Yes - I know what that is like - to be too sick to speak but having to explain to the docs what you need, and then have to fight for it! I am sorry @cmep37!

[cmep37]

My GP has investigated all the options to get me IV fluids but she's not found any way of doing it. The only place I can get them is in hospital and that requires a consultant's order and I can't get one of those! I've seen all the cardiologists in my area and the one I'm with was the best of the 3.  When I asked him about IV fluids, he said "That's an American thing, we don't do that here!  There is no need for them, you can get the exact same result from drinking" (this despite me telling him that I peed out everything I drank inside an hour).  I have yet to hear of anyone in the UK getting regular IV fluids for POTS.  I suppose I could stop drinking and go down to the ER really dehydrated, they would probably give them to me then but I'm bad enough and I just can't face making myself intentionally worse.  I am a little better than I was a couple of weeks ago - I'm only vomiting a couple of times a week now rather than every day and my BP is better - more like 90/70.  My biggest problem at the minute is fatigue - I am just dragging myself about yet at night I'm not sleeping - go figure!

[Chiara]

Is there any possibility that your PCP can give you the infusion in his / her praxis? I've gotten 1000ml weekly about 6-8h, so after my PCP connected me with the infusion, I went home with the infusion. It's very easy to pull the infusions out, so I did it by myself everytime... 

Maybe it could be a possibility for you too? Sometimes I drove 2h in the car with the infusion, when I was far away and needed one. 

[MikeO]

14 minutes ago, cmep37 said:

you can get the exact same result from drinking" (this despite me telling him that I peed out everything I drank inside an hour)

The Dr i am working with has me drinking other fluids and not just water. The explanation she gave me was it helps you retain the fluid "not peeing it out right away" and suggested a sports drink or water with some type of powdered additive or flavoring. She also has me sleeping at a 30 degree angle at night as well helps with nocturia as well as my supine hypertension

[cmep37]

3 hours ago, Chiara said:

Is there any possibility that your PCD can give you the infusion in his / her praxis?

Nope this bugs my GP a lot, but in the UK the NHS don't allow GPs to give IV or blood transfusions any more!  My GP could lose her license if she did.  6 years at medical school and they don't think they have enough training or experience...!  I think it all boils down to a massive fear of litigation in the NHS but it's the patients who are losing out.

3 hours ago, MikeO said:

The Dr i am working with has me drinking other fluids and not just water.

This is really good advice - I used to worry about the effects of drinking too much water until someone on this forum suggested I try electrolytes .  I use Nuun tablets for at least 2 litres of my 3 litres of fluid a day - they are pretty expensive though and I still seem to pee most of it out ..... I did a 24 catecholemine test a couple of years ago where you have to collect all your urine for 24 hours and out of about 3 litres drunk, I had peed out just over 2900ml!   I wee 12-15 times a day and am up at least 3 times during the night.  I haven't tried altering the angle of my bed though - do you think it helps?

[MikeO]

1 hour ago, cmep37 said:

I wee 12-15 times a day and am up at least 3 times during the night.  I haven't tried altering the angle of my bed though - do you think it helps?

Yes it does. Since i changed the angle of the bed i do not get up like i used to just every once and awhile but i will pee a lot once i get up for the morning. I am just like you during the day, i will wiz several times even before 10 am.

[cmep37]

It sounds like it's worth a shot then - I am so fed up of just getting off to sleep and then waking up 30mins later needing a wee!

[Pistol]

On 7/30/2021 at 8:44 AM, MikeO said:

he Dr i am working with has me drinking other fluids and not just water

Yes - drinking only water is useless. You need to combine the water with salt in order to keep it within your circulatory system. But even that does not help in some cases. I do not respond to taking in vast amounts of water and salt by mouth, even when combined with other electrolytes ( @cmep37 - your docs in the UK are simply completely wrong by suggesting that drinking is equal to IV fluids! I gladly will send them my medical record to prove it! ) The reason for that is that adrenaline triggers urination ( part of the fight-and-flight response ) and in cases that adrenaline soars due to ANS malfunction there is no amount of oral hydration that will stop that. IV fluids however provide an immediate boost to the electrolyte/fluid/pressure balance in the circulation and - in many, many cases of POTS - normalize HR and BP to the degree that oral fluid replenishing is not able to. In my case I will pee out every single drop I drink - but as soon as I get IV fluids this all stops. I no longer pee everything out ( on the contrary - years and years of IV fluids during flares have shown that my urinary output DECREASES with IV fluids, and BP and HR improve almost immediately ). 

 

On 7/30/2021 at 8:24 AM, cmep37 said:

When I asked him about IV fluids, he said "That's an American thing, we don't do that here!  There is no need for them, you can get the exact same result from drinking" (this despite me telling him that I peed out everything I drank inside an hour).  I have yet to hear of anyone in the UK getting regular IV fluids for POTS.

He is probably right: it may be an american thing but that is because we actually did STUDIES here. Not to be rude - but if there is something that works in another country - why not do your own studies? In the US the use of IV fluids for treatment of POTS is still highly controversial, b/c of the risks associated with ports and IV access in general. But it is also a fact that many people suffering from medication-refractory POTS have no other option. I myself have gained tremendous control and was able to get back a lot of independence because of weekly IV fluids for the past 3 years. No complications - just simple blissful ability to remain conscious, upright and have a bit of energy every day. Oh - and my HR and BP have been within normal limits since starting weekly IV fluids - no longer the 160/110 to 60/40 readings I had before! 

[cmep37]

@Pistol it makes me really angry too - the NHS is great in some cases but in others it fails badly!  It took me nearly 15 years to get a diagnosis and that was from my own research rather than any input from doctors.  I have a letter from my cardiologist saying that he is at a loss as to what to do with me yet I have suggested a couple of things (Mestinon and IV fluids) and been shot down - all he can suggest is CBT to help me cope with a life of chronic illness!!  After nearly 20 years of severe POTS I no longer faint - I know the signs well enough to sit down before I pass out so I do not need hospital treatment and it seems that my life of being housebound, struggling to cope every day is something they think I should just accept.  There is just nowhere else for me to go - I have been to all the cardiologists in my country (Northern Ireland is very small so there are only 3) that treat POTS and they all sing off the same hymn sheet.  I am not well enough to travel to the UK for treatment and honestly I don't know if any of the consultants there would be any better - mostly they are still stuck on the SSRIs, midodrine, fludrocortisone, betablocker, ivabradine mindset and I have tried all these without success.  I am considering seeing a US consultant via telemedicine but I have several concerns - my GP says she will prescribe any drugs they suggest so long as they are not considered "experimental" but I am not sure how it would work in terms of tests that might be required or what would happen if I had an adverse reaction to the prescribed drugs and needed advice in a hurry.  Honestly at the minute I just have no spare energy to figure out what I should be doing!

[Chiara]

Dear cmep37, 

I understand you sooo good. And I am so sorry all what you are experience for so much years!

I live in Germany and for long years I was sick and lost in the German healthcare. All doctors told me: You have no dysautonomic disorder, you are to old (50) but I felt so. But than I flew to Prof. Grubb in Toledo, I waited 1 year to this appointment. He saw me and gave me the hope and trust with the diagnosis: autonomic disorder closely related to POTS and autonomic neuropathy. And he took care of me from across the ocean, now for 4 years. And my PSD works with him together. I've gotten infusions weekly for 2 1/2 year and we made a lot of drug experiments in this time. Most of them ended up horrible. But Prof. Grubb and my PCD never gave me up!

And now I need not longer weekly infusions, I am very stabile, can stay and walk by myself. But my PCD did everything what Prof. Grubb considered... off-label medications too!

So be hopeful, it could be a great challenge but a great chance for you and your PCD too. I have now in Corona tele-health with Dr. Grubb or his Assistent Beverly Karabin together with my PCD. So he can ask them all questions he need to know. 

I hope you will find a very good specialist soon! With a big hug! 🙌🌺🙋🏽‍♀️

[cmep37]

Hi @Chiaracan I just compliment you on your fantastic english  (Ich kann nur ein bisschen Deutsch sprechen).  Thank you so much for taking the time to reply - I am really pleased that telemedicine is working out well for you and well done on finding a treatment that works for you.  Blair Grubb is one of the doctors I have on my "would love to see list" but his waiting lists are very long.....  I am also considering Svetlana Blitshteyn and Satish Raj - has anyone any opinions on either of them?  Please PM me if you don't want to/can't post publicly.

[Rexie]

Anhidrosis (inability to sweat normally) is a serious condition. If a person can’t perspire, their body can't cool itself, leading to heat exhaustion or heatstroke (a potentially fatal condition; worry when body temperature hits 103 F/39.5 C or higher). You can be perfectly hydrated and still get in trouble if you have anhidrosis. A quick and good way to tell if you are hydrated is to observe the color of your urine – a hydrated person will have clear or very pale urine. 
After being a heavy sweater all my life, after HSV-1 encephalitis in 2012, I didn’t sweat at all for several years. Now I sweat some and anhidrosis was added to my medical records after autonomic nervous system testing at UTSW-Dallas last year. If you can’t sweat, your primary care doctor, your neurologist, other care-givers, and family and friends should be made aware of your condition so they can get you to a cool place or to the ER if you crash in the heat. 
Summers for me are scary. I usually give myself heat exhaustion once a summer season, reminding me to limit outdoor activities in the heat. The other day when it was 90 F (32.2 C), usually safe for me, I spent 18 minutes outside walking a gentle 0.30 miles and doing some minor pruning – my blood pressure dropped to 60/43, heart rate 105, and body temperature went to 100 F (37.8 C) making me feel dizzy and icky. I take rescue hydrocortisone for the low blood pressure plunges and an hour later after rest and a tall, cold drink of water, blood pressure had come up to a low normal reading and body temperature had dropped to 97.5 F (36.4 C) inside in the cool. While back to normal, more or less, the rest of my day was pretty well shot due to this heat stress. 

Anhidrosis, Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/anhidrosis/symptoms-causes/syc-20369400

Good overview of heat & cold stress with various causes: 
Thermoregulatory disorders and illness related to heat and cold stress, William P.Cheshire, Jr., Autonomic Neuroscience, Vol. 196, pp. 91-104; 2016 
https://www.sciencedirect.com/science/article/pii/S1566070216300017 

Everything you ever wanted to know about hyperthermia & hypothermia:
Human Physiology in Extreme Heat and Cold, Beker BM, Cervellera C, De Vito A, and Musso CG, Int. Arch. Clin. Physiol., 1:001; 2018
https://clinmedjournals.org/articles/iacph/international-archives-of-clinical-physiology-iacph-1-001.php 

[cmep37]

Thank you for this @Rexie- I will make sure I read those articles.  That's a great tip about urine - the darkest mine gets is pale straw coloured so I think that means I'm well enough hydrated. Thanks to severe POTS I rarely do much more in the heat than sit below an umbrella and our highest ever temp in Northern Ireland was still only 31.4C - today it's a much more usual 19C so hopefully that means I am unlikely to have the same problems with heat exhaustion you do.  I will get my GP to mention it on my notes though in case it ever becomes an issue. I would love to have the full set of autonomic tests you've had but over here that's not routinely carried out - I was diagnosed through a TTT and that's all most of us are ever offered!

[MikeO]

29 minutes ago, cmep37 said:

I was diagnosed through a TTT

I would have just been happy to had a diagnosis when i had my two TTT tests but the health provider did nothing with the data because it showed not being a cardiac issue but clearly showed a neurogenic origin "frustrating" so i went to the University in Madison Wisconsin and it only took the Girl 10 mins to figure out that i have neurogenic orthostatic hypotension. 

[cmep37]

Hugs @MikeO - that must have been so annoying.  It's the same problem many of us have experienced - doctors who only consider the area they specialise in and anything outside that, they aren't interested in!  I've lost count of the number of times a consultant has told me I need to see a consultant in a different specialism only for them to say my issue is not within their area of expertise either and refer me on to someone else who again says they can't help and then suggests I see the first doctor again!  You end up feeling like pass the parcel - the patient no-one wants to keep...