That time of year? Massive sweats, feeling worse w/ MORE sleep.

[MTRJ75]

Let's preface by saying I certainly realize October is generally recognized as a part of the year with heightened symptoms for a lot of POTS/Dysautonomia patients and I also had my first real flares 3 Octobers ago and while last October was quite a bit better, mid-to-late-fall is still my worst time of the year. 

However, it was just last week where I would have said I was perfectly at my baseline of not feeling like I could do anything, but not feeling like I needed emergency medical treatment either. And then my work schedule lightened up at the end of last week. So much so, that I thought I would switch the alarm off and get some extra sleep this week. 

The result is the same morning burning, screaming muscles I usually wake up with and then after I get up, medicate, take out and feed the dog, I'll sit back down for the most agonizing part 20-30 minutes of my day, which will generally let up some after that. First off, that's not really happening this week. It somehow seems the more rest I get, the more exhausted and achy my body is all day. I don't mean minor aches either. I mean I have trouble even using muscles all over my body for anything or even getting up off the couch. Even sitting up for long periods. 

My body has been in such a state that a couple of years ago, I'd probably have been in the ER this week, if my mental capacity hadn't improved enough to calm my body as much as possible. Is this a weather change thing or is somehow getting more sleep (8-9 hours instead of 6.5-7.5 normally) actually worse for me? Can that even be a thing. My entire body has been in a high state of exhaustion and anxiety, deep aches and low blood flow all week. 

I'm walking around like I'm dealing with a drunken concussion if I am able to get up with a tightness/burning/tingling up the back of my neck through my head all day (which, of course, I feel all through the coat hanger area as well). 

Then there's the sweating, which seems to be getting worse and worse by the week for a while now. Anything...ANYTHING that makes me move or even have to think too much, now drenches me in sweat. I'm changing shirts several times a day now and have even ruined a couple of good t-shirts. Phone calls are getting ridiculous now and it's like my body has an inner sense of who I'm talking too. Friendly phone calls might be a light sweat, but if it's something to do with medical issues or some kind of bill, drenching sweats right away, much worse if I have to lean forward to look something up or write something down. I've even begun putting people on speaker because the phone has begun slipping out of my hand. 

Then, of course, if I can finally get my body calmed down from that sweating, heated up, fight or flight, need to empty kind of response, I'll immediately flip over to the opposite extreme...freezing with a constant need to urinate. Frequently, I'll flip back and forth several times per day. 

I'm already on so many medications and thought that after starting LDN a few months back that my baseline might have even been improving in some ways. What am I lacking/missing here? 

[MikeO]

Yeah i go thru this as well. I don't I have an answer for it. I know i will feel warm with med changes but even before that i can be warm as a pig in bed and sweating with no fever then freezing cold. This happens during the day as well. I very rarely get a temp to 100 even when sick. I do have to say i have been doing better with my med changes. IBS symptoms have lessened up i can poop again and do not feel bloated or full all the time.

Keep after it. Keep in mind that too many meds can have unwanted side affect that will aggravate symptoms.    

[MTRJ75]

The weird thing (or maybe not so weird) is it doesn't happen as often in bed or lying down anymore. But I guess lying down is when a lot of us are least symptomatic. And the heating sensations are more in my core, not so much in my head, so I've never actually recorded temperatures that increase too much even if my insides feel like a furnace on high. 

As far as the meds go, I feel like they keep trying to add meds to deal with the side effects of the last one, but some of them do seem necessary, unfortunately. 

[MikeO]

13 hours ago, MTRJ75 said:

I'm already on so many medications and thought that after starting LDN a few months back that my baseline might have even been improving in some ways

As far as the meds go, I feel like they keep trying to add meds to deal with the side effects of the last one, but some of them do seem necessary, unfortunately

My Daughter just started LDN she has to get it from a compounding pharmacy. She has fibromyalgia and suspected POTS. She was recently put on a Beta-Blocker as well. She is on the fence as to if the LDN is really helping but was told to stick it out for a few months to get the full benefit from the drug. 

Just like me her Dr's kept throwing drugs at her symptoms which just made things worse. Her new team has weeded out the offending drugs and she is feeling much better. She now only takes the LDN, Tizanidine and the beta-blocker

I have recently went on a drug overhaul as well. for me a combination of metoprolol and lisinopril made me terribly sick.

As to the heating sensations please to reach out if you come up with a solution. I pretty much gave up on trying to figure out what causes this with me.

As @Pistol  mentioned sometimes one has to kiss the frog several times before you get your prince. 

[jillmae]

The summer was completely awful and just when I thought I was starting to feel better, I am starting to feel very symptomatic. I signed up for this forum looking for an answer to this question. I am losing my mind because I am either freezing at night or too warm. Anyone think that a cooling vest would work? They seem costly and I am worried I will just end up with the same issue, but I am just getting desperate for good/consistent sleep.

[Pistol]

@jillmae - my sister, who also has POTS, was in the same boat as you. She purchased cooling neck and ankle wear. They are braceletsm anklets and a neck thing that you freeze and then put on. She says they really helped her stay cool. You should be able to find them on amazon, maybe major retailers, but summer season is over, so maybe amazon is the better place to start. -- If you freeze at night a weighted blanket might help - I have found that they stabilize my sleep and temperature better than a warming blanket. Some epople also swear by using a hand held face fan. 

Some medications can cause you to have these symptoms also - have you asked you pharmacist or doc if this could be related to your meds? 

I hope this is a bit helpful. I know first hand how frustrating it is when you cannot sleep or get at all comfortable, and - having survived menopause and experiencing temperature fluctuations from POTS as well - know how it adds to the fatigue and brain fog we already have. Keep trying - and speak to your doctor!

[MikeO]

@jillmaeI did buy a memory foam pillow that was advertised to have a cooling effect to it. I use it as a hugger pillow when i start getting too warm in bed.

[jillmae]

Do you ever end up getting too cold with a cooling device? My concern is that I am constantly shifting from cold to hot and back.

[MikeO]

2 hours ago, jillmae said:

Do you ever end up getting too cold with a cooling device? My concern is that I am constantly shifting from cold to hot and back.

Not sure who you are quoting. Personally i do shift from hot to cold. The memory foam willow helps with the hot flashes gives some relief. as far as i have seen it does not induce me getting too cold. When that happens i will just move the pillow. Yes this does interrupt my sleep. Like @Pistolmentioned a cooling fan can help during the day especially during the hot summer months. Like you this summer i went very symptomatic. Only advice is to take things one day at a time. 

[jillmae]

Quote

Not sure who you are quoting. Personally i do shift from hot to cold. The memory foam willow helps with the hot flashes gives some relief. as far as i have seen it does not induce me getting too cold. When that happens i will just move the pillow. Yes this does interrupt my sleep. Like @Pistolmentioned a cooling fan can help during the day especially during the hot summer months. Like you this summer i went very symptomatic. Only advice is to take things one day at a time. 

Thank you so much! That was the answer I was looking for. And thank you, I am trying really hard, but this year has been one of the worst I have ever had. I I got sick suddenly overnight in Feb and learned I was going to lose my job while on FMLA (I honestly believe my illness had something to do with it). Then my disability insurance from my employer declined me (after initially approving me) and I had to hire a lawyer for the appeal, which is still ongoing. A NURSE figured out the POTS after two doctors didn't (one medicated me for an ear infection), and the cardiologisist who diagnosed me recommended a Vitamin D test (where I had a level of 10) as my primary care provider had not done one.  Turns out I have probably had POTS all my life and it just got missed all those times I came in for random problems. Guess it's not normal to sit in showers or with my legs up in chairs or all those other things that make sense now. Also learned I was hypermobile by my fabulous POTS specialist. I am still trying to work out any potential causes but I feel like I have to walk on eggshells and have ninja level medical maneuvering to actually get any help/support. And now I can't sleep and that is just too much. TOO MUCH I SAY!

 

[MTRJ75]

I have noticed that the heating/sweating effect has been a bit better the last few days as the weather has cooled, but it's also partially about somehow calming your body so that it isn't as amped up and producing heat. It was 60 degrees in the house yesterday w/o heat and I was fine (temperature wise) for most of it, but as soon as I took a phone call and had to lean forward to take a note, heavy sweating again. 

[Bergbrow]

On 10/20/2021 at 9:59 AM, jillmae said:

Do you ever end up getting too cold with a cooling device? My concern is that I am constantly shifting from cold to hot and back.

That’s me. Constantly switching between shivering and boiling no matter the room temperature. I have a sweatshirt and fan with me 24hr/day because I cycle through blazing and freezing all day, every day, winter-summer. When I’m in bed, I turn on a fan 5-10 times overnight when I feel myself heating up, then my temp goes down and I turn the fan off.  A short while later I’m freezing and put on my socks and sweater as the cold and shivering becomes unbearable, then hot again take those off, repeat cycle.  This awful cycle overnight fuels my insomnia. Although I have noticed that I seem to have shorter recovery times from the blazing/freezing when I’m on an antihistamine, except when I have multiple symptom flares, nothing can be managed during those times.  I just have to survive that period.  

Anyway, the cooling neck/vest/body thing’s not as optimal for me since I can’t stay in a consistent range. 

 

[jillmae]

I'm losing my mind. How do you go weeks on end without sleeping well?

[Pistol]

@jillmae - it is very tough. When this happens to me ( right now I wake up every morning at 3 am and cannot go back to sleep ) I just try to avoid any stimulation during the day. That is easier said for me than most, because I am homebound and disabled from POTS, so I can stay "sheltered" in a room and avoid exercise etc when I am bad. I also avoid phone conversations etc during that time, because that is all stimulation. Eventually - for me - I go back to a healthy sleep routine. But while in a high-adrenaline surge I have to avoid all stimulation. 

[Bergbrow]

2 hours ago, jillmae said:

I'm losing my mind. How do you go weeks on end without sleeping well?

yes, ‘losing my mind’ is what weeks on end of insomnia does (functionally and emotionally). Because in addition to the unrelenting exhaustion it makes my other symptoms very difficult to manage. Since I cannot change my body I have to ride it out with tricks and tools.  It’s an awful thing to have on top of a long list of my other symptoms but I haven’t determined how to stop it.  

@Pistol much of what you’ve said describes me too. 

[Rexie]

jillmae wrote: "I'm losing my mind. How do you go weeks on end without sleeping well?"

I like sleep and have found things that help me sleep, most of which everyone could do or take safely regardless of their issues and current meds. My body errs on the side of cold most of the time now (I don't sweat much anymore) although lately things have gotten better. 

For sleeping I like comfortable light cotton sweat pants, a cotton T-shirt, a chamois or other cotton flannel overshirt, and a simple cotton blanket (cotton fabric is breathable and transmits moisture away from the body while being absorbent enough to remove prickly sweat from the skin without feeling damp itself). I adjust the house thermostat until I am comfortable, keeping it within a 74-77F (23-25C) range. If I get too warm it is easy to remove the overshirt, toss back the blanket, and adjust the thermostat (fans, wind, wind noise, and things touching or pressing against my body are totally irritating except for a purring kitty tucked under my neck, close to my heart). A light snack with a short glass of milk is most often a must and can be sweet/high carb, salty, or high protein/low sugar or a combination. 

For some of you, a snack before night resting may not work. Depending on one's issues, it might be necessary to experiment with eating (and what you're eating) vs. not eating before sleeping. 
Fasting suppresses the sympathetic nervous system, and this conserves calories by diminishing metabolism and heat production. 
Eating stimulates the sympathetic nervous system - norepinephrine and epinephrine are selectively influenced in response to eating. During eating, stimulation of sympathetic activity expends calories by accelerating metabolism and producing heat. Ingestion of glucose or fat only minimally increases the metabolic rate. However, protein stimulates oxidative metabolism, typically increasing the metabolic rate approximately 20%. 
Eating and increased sympathetic activity may account for the increased incidences of uncomfortable sweating, hypertension, coronary syndromes, and arrhythmias in some people. 
For me, running cold and tending toward hypotension, fasting at night with its withdrawal of sympathetic activity to the kidney and in general, increases my risk for hypotension. Not eating for long hours also makes my body work harder to supply glucose sufficient for the requirements of the brain and nervous system which use glucose as a major source of fuel. Fasting tends to flip my body to gluconeogenesis and protein catabolism in muscle, something that isn't good for my body. 

I like to take ashwagandha (660 mg pressed root herb powder) with slippery elm herb (400 mg, for digestive health) before time to sleep, sometimes with chamomile tea (it’s almost as good as a Xanax). If daytime activities have really overdone me, I'll take a passion flower (passiflora incanata, 350 mg) herb capsule, too. If spasticity is an issue as it often is for me, I'll add a touch of cannabinoids (THC/CBD). Mental preparation before retiring is extremely helpful (objective review of the day, gratitude list, prayers, meditation, dispensing with unjustified self-condemnation or undue fault-finding, reading, whatever) and to this routine I make sure to brush my teeth and wash up before lying down since 'arctic fresh' toothpaste and brushing can wake me right up with their sensory stimulation. 

This personal program has added several hours of nice sleep time to my nights with no side effects (it seems like a lot all written out, but is really not in life practice). If I get up to pee or get awakened, I can go right back to sleep which wasn’t always the case before these GABA-enhancing, calming herbs. I always keep a book novel handy for those times when my mind is too fretful - reading is a great, quiet distraction and sanity-saver. My eyes are usually peacefully closing before I've read too many pages...

Sleep well! 

[jillmae]

I've started to suspect it might be being increased by the recent addition of Modafinil to the mix (been on it about a month). I am stopping it for a couple weeks to see if I improve any.

[POTSius]

I can very much relate re the fall flare ups

They are quite a mystery, the best explanation I can think of is seasonal allergies somehow interacting with my MCAS.

Here is a poll I made a few years ago re the same

 

[sunbun]

October is always the worst month for me in terms of POTS flares and symptoms. I believe it’s the rapid weather change, less sunlight and later morning which affects my circadian rhythm, and all kinds of nasty viruses going around. My depression and anxiety always gets worse in fall too. The absolute worst time for me was October 2018. I thought I was going to die. I had a heart rate of 180 that wouldn’t come down for 3 days even when reclining, got kept in hospital and had to go all kinds of nasty invasive tests and scans. I believe it was triggered by a stomach virus. Even a mild cold or cough can really set me off into a spiral. I have to be very vigilant about wearing a mask in public and making sure I use a harsh hand sanitizer that kills non enveloped viruses like norovirus as well as regular enveloped viruses that are easily killed with alcohol. Any kind of immune response can really throw my autonomic system out of whack. The sweating definitely sounds related to autonomic overstimulation. I get chills when my vague nerve is irritated or I am anxious, like full body shaking, and have had sweats too. The only upside is that my blood pools a little less during cold weather and I don’t constantly feel like I’m going to pass out from heat exhaustion. 

[jillmae]

Stopped the modafanil and still losing my d*** mind. POTS is the worst. 

[sunbun]

Oof here we go again. Like I said I absolutely dread October and November. The last week have been having a flare with worse tachy and sweating profusely, but I can’t seem to sleep and it’s making my symptoms worse. Finally got 9 hours sleep yesterday and my heart rate finally went under 100. It’s been sitting at 130 at rest since Monday. Did you have any colds or flus recently? Have you had a UTI test?

[jillmae]

Funny that you ask. I found out that I had a severe UTI last Thursday. 

[sunbun]

8 hours ago, jillmae said:

Funny that you ask. I found out that I had a severe UTI last Thursday. 

Jillmae, I find that any time my body is fighting an infection, or I start taking antibiotics, it can trigger a POTS flare, which is why I take a boatload of probiotics and cranberry juice and try to avoid antibiotics like the plague unless necessary. I also suspect Candida plays a part too. Have you taken any antibiotics recently? I got palpitations and heavy sweating after taking just one dose of trimethroprim, made my gastritis flare up too. And it’s considered one of the more being antibiotics too.

[jillmae]

On 11/21/2021 at 6:35 PM, sunbun said:

Jillmae, I find that any time my body is fighting an infection, or I start taking antibiotics, it can trigger a POTS flare, which is why I take a boatload of probiotics and cranberry juice and try to avoid antibiotics like the plague unless necessary. I also suspect Candida plays a part too. Have you taken any antibiotics recently? I got palpitations and heavy sweating after taking just one dose of trimethroprim, made my gastritis flare up too. And it’s considered one of the more being antibiotics too.

I wasn't before I found out about the UTI, but I am on antibiotics now. Definitely doing better than I was, but always feel that POTS type of wonderful - still waking up from sweats, etc. But definitely less insomnia. 

[KTBug]

On 10/20/2021 at 11:26 AM, jillmae said:

Thank you so much! That was the answer I was looking for. And thank you, I am trying really hard, but this year has been one of the worst I have ever had. I I got sick suddenly overnight in Feb and learned I was going to lose my job while on FMLA (I honestly believe my illness had something to do with it). Then my disability insurance from my employer declined me (after initially approving me) and I had to hire a lawyer for the appeal, which is still ongoing. A NURSE figured out the POTS after two doctors didn't (one medicated me for an ear infection), and the cardiologisist who diagnosed me recommended a Vitamin D test (where I had a level of 10) as my primary care provider had not done one.  Turns out I have probably had POTS all my life and it just got missed all those times I came in for random problems. Guess it's not normal to sit in showers or with my legs up in chairs or all those other things that make sense now. Also learned I was hypermobile by my fabulous POTS specialist. I am still trying to work out any potential causes but I feel like I have to walk on eggshells and have ninja level medical maneuvering to actually get any help/support. And now I can't sleep and that is just too much. TOO MUCH I SAY!

 

We need to get you some sleep. Start my calling your Primary Doctor and speaking to them about your insomnia. There are several options both natural and prescription medication available to you. You cannot go without sleep and rest. You are going to really be your own advocate for your health and the healthcare you receive. Because I can be really hard to be heard and get the care you deserve. That’s one of the best pieces of advice I have ever gotten. 
Have you tried anything over the counter? Do some research, Start there. If your primary doctor doesn’t hear you then find yourself someone who does. Have you had your B vitamins checked? I encourage you to look into that. You’ve got this!!