Night sweats and chills

[Aime]

Hi Guys, just wondered if anyone gets an increase in spells of night sweats from time to time. I had a "normal" session of them last night but the night before had very bad chills after heavy sweats, not nice at all. I have PV and was hoping this wasn't a sign of things getting worse.

Kind regards Aime x😺

[Tinkerbell13]

Hi Aime. Absolutely can identify with everything you wrote. Usually regular sweats, but every now and then far worse, and horrible chills night before last. Have worked out sweats are worse when eaten more at supper time. If stick to fruit after about 6.00 p.m. they are less. More than coincidence, I reckon, but would be interesting to find out if others find the same. I have ET not PV, but

guess may not make much difference. Best regards, Tinkerbell13

[Aime in reply to Tinkerbell13]

Thank you Tinkerbell, I will definitely give that a try. Kindest regards Aime xx😺

[Tinkerbell13 in reply to Aime]

Forgot to say that so go along with everyone who says 'drink masses of water' - not sure it actually prevents any of these miserable night sweats, but think we need the actual replenishing of what we lose each time we sweat. Best wishes to you, Aime, hope things improve for you. Tinkerbell 13

[Aime in reply to Tinkerbell13]

Thank you Tinkerbell. I do try and keep my fluid intake up. Take care Aime x😺

[Shortcyclist]

I have PV. Night sweats were a symptom before I was diagnosed last autumn and they haven't diminished with hydroxy. I've stopped drinking coffee in the evening but I can't say it's helped.

[jane13]

same problem a couple of years ago - i drank more water at all times of day and night and that seemed to help. i also found my blood counts were higher when i had bad night sweats and think i should have taken higher dose of hydroxy to slow my bone marrow down. Haem was only concerned about stabalising blood counts and if this achieved with more venesection he wasn't bothered. Am now verging on myelofibrosis so in my case think more hydroxy would have been better and given me fewer night sweats! good luck jane

[Kari1961]

Absolutely! This past few nights have been horrendous ~ I've barely slept. Not only do I have PV I am also menopausal, so I'm getting a double whammy of symptoms. It's getting so bad that I have no idea how I function during the day

My PV is managed by Aspirin and venesection, and my Doctors have advised against HRT due to risk of stroke.

[jane13 in reply to Kari1961]

i had both lots of sweats together too ; horrendous!!! I tried soya for the menopausal ones. all the best Jane

[nodmeister in reply to Kari1961]

Kari.......sympathy is all I can give you. My G.P. Is superb and as long as my blood pressure is o.k. Will let me have my 'Sweaty pills'. I tried for 3 years to persevere without medication. What an idiot I was. So sympathy to you. X

[Kari1961 in reply to nodmeister]

Thank you nodmeister.

I had a small stroke back in 2012 (before PV diagnosis) So HRT is a definite no for me. My BP was high before the stroke and PV diagnosis...I was medicated for it. Since diagnosis and regular venesection it is now normal and I'm off the BP meds.

I still suffer from the after effects of the mini stroke - very weak right leg and drop-foot. I can't wear slip on shoes as they drop off..

So, although not happy to suffer the menopausal symptoms it is definitely the lesser of two evils. I had a friend who suffered a mini stroke, then 5 years later he had a brain stem stroke.... he sadly died in June '15 due to complications...

I try to lesson the sweats with soya, ginkgo biloba, star flower oil etc. Which don't always cure or help but I prefer natural rather than HRT and a possible major stroke. xx

[lizzziep]

Yes!! 😳 I do sometimes get night sweats more often than others. I haven't noticed any particular foods triggering it, and I don't eat late. I also occasionally get hot and a little trembly and light headed during the day. This only lasts about 30 seconds to a minute, it's the sort of feeling you get if you have low blood sugar. I have ET and am on HU and aspirin. Haematologist not interested.

Best wishes

Lizzie

[Nickyb57]

Hi, I have PV Dx 2009, I concluded a while ago the my internal thermostat was shot as I get night sweats. I wake up wondering why I've woken and then the heat begins to rise. I've found that avoiding wine, chocolate and surgery foods (particularly in the evening) helps together with drinking lots of water. Nicky

[Aime]

Hi Guys, thank you so much for your replies, will try all the tips. The other night with the bad sweats and chills was a bit of an unpleasant reminder that I have got a serious condition. Your support is so much appreciated. Kindest regards Aime xx😺

[mol56 in reply to Aime]

Yes, I have bad nights when I cannot sleep and have burning skin which is hot and then cold. Like you say, it is a reminder that we have a serious condition.

However, there are some days when I forget about E.T. and I am pleased to say that these far outweigh those when I can feel a little bit sorry for myself.

[funnyfeet]

Hi, I have ET and sometimes get a run of nights sweats and itching which drive me mad! There seemed to me no set pattern at all that I have been able to figure out.

That said, I am trying to cut sugar out of my diet and only realised when I read Nicky's comment that there might be a connection as I haven't had any sweats since I started cutting out the sugar. Could be a coincidence............

Karen. Xx

[buddin11]

I started out with ET, now have MF. What I would like to ask you all is if anyone else has nightmares along with the night sweats. I never seem to have one without the other. Have told my hematologist about the sweats of course, but have not mentioned the nightmares. They are so bad, my husband has to wake me up, as I'm moaning and crying out in my sleep.

[nodmeister]

Hello, just last night I had a 'Sweaty' bout. I suffered terribly with hot flushes and dripping wet, especially at night, with my menopause (no mood swings though). I was very confused as to why I was sweaty again as I have my H.R.T. Tablets (sent from the Gods!, ) Then low and behold I find it is another symptom. No point telling my consultant still. He will not recognise any of my symptoms as being related to E.T.

Good luck 🍀.

Nod X

[Aime in reply to nodmeister]

Hi Nod, sorry to hear you have these nasty sweats too. My haem did response when I told him about them and acknowledged they were a symptom of my PV. The link which Maz gave (sorry Maz) I have lost it again, gives you a list of common symptoms for our MPNs and night sweats are a troublesome one for ET, PV and MF. I am on HRT too so I know it's not my age that's the problem. I did get a mattress cover which is supposed to keep you cooler but thought it was working but don't think so now! There are products to keep you cool so going to investigate them and will post on forum if I find something that helps. Have tried the diet suggestions but haven't made a difference to me but probably need to give things more time. I do think it's very important to rehydrate the next day as was suggested by Jane.

Hope things improve for you very soon. Kindest regards Aime xx😺

[nodmeister in reply to Aime]

Thanks Aime. X

[OxonAndy]

Hi there...i just got diagnosed with PV in March 2018. I have night sweats most nights which I have suffered for years even when cold in winter. Never had the chills afterwards though.

Andy

[Aime in reply to OxonAndy]

Sorry to hear that you have the night sweats Andy. When mine are bad, I make sure I drink plenty of fluids the next day and usually fatigued if I’ve had a bad night of them, so rest also.

I find if I get the chills too, that I feel even worse. Hope things improve for you.

Kindest regards Aime x😺😺

[Liberty82 in reply to Aime]

Gabapentin and Pregablin especially are fantastic for night sweats. I know this post is old but just thought I'd let you know. I'm plagued with them day in day out. Usually it's just overheating and sweating during the day but some nights it's like I'm running a fever. I go from boiling hot to freezing cold. One minted I'm shivering and the next I'm sweating. It really is horrible. I really recommend either of those medicines. They are given to menopausal women to help with hot flushes too. They have been a life saver for me and hugely improved my quality of life.

Best wishes to you all x

[Aime in reply to Liberty82]

Hi Liberty, that’s very handy to know because as you say the night sweats are not good. Thank you and kindest regards Aime xx😺😺

[Aime in reply to OxonAndy]

Meant to say, have you looked at the MPN Voice website? If you haven’t it is definitely worth a visit as the information is trustworthy. Keep posting on this forum and you’ll make new friends even though you haven’t met the people behind the posts. Joining the forum was the best thing I ever did when I was diagnosed with PV back in 2012.

Kindest regards Aime x😺😺

[OxonAndy in reply to Aime]

Thanks Aime the forum seems really good and it is good to share more about the condition as I am new to it

[EleanorPV]

Always best to run something like this past your haemo or specialist nurse. Although I’m struggling to breathe today and have a headache. My specialist nurse has sent me to my GP. Waiting patiently for an appointment. Fingers crossed for the morning. Xx

[EleanorPV in reply to EleanorPV]

Lol didn’t realise this was an old post.

[Aime]

Hope you got on ok Eleanor. Kind regards Aime xx😺😺

[EleanorPV in reply to Aime]

Still waiting to rule out a PE.

[Aime]

Got everything crossed for you. E hugs Aime xx😺😺