Feeling extremely cold: I am paroxysmal... - Atrial Fibrillati...

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Feeling extremely cold

Letofeyd profile image
37 Replies

I am paroxysmal AF - usually an episode every other day. Surgery in January.I am taking Sotalol and Rivaroxaban.

My question is about feeling cold at night.

Often, at night, a little while after I go to bed and am warm and sleepy, I am experiencing bouts extreme cold, shivering, and really unable to get warm.

The cold flows through my whole body and seems to get right to my core.

I have a hot water bottle, and am piled high with a duvet, quilt and even a fluffy blanket in bed, so I can feel the heat on my skin, but when this cold strikes me, nothing seems to warm me inside.

It is miserable. I am so cold I cannot sleep.

Is this something to do with the drugs? And if so, what could I do to solve it?

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Letofeyd profile image
Letofeyd
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37 Replies
Paulbounce profile image
Paulbounce

Hi Letofeyd.

This is just my personal view point - I am not a doctor. I don't think your coldness is related to your meds. I'll put a copy and paste below which may/may not help.

Paul

Low Room Temperature: Make sure your bedroom is sufficiently heated. Sometimes, even with warm bedding, a cold room can make it difficult to stay warm.

Anemia: Anemia, a condition characterized by a lack of red blood cells or low hemoglobin levels, can cause cold extremities. If you suspect anemia, it's essential to get a blood test done to confirm the diagnosis. Iron supplements or dietary changes may be recommended by a healthcare provider if anemia is the cause.

Thyroid Issues: Hypothyroidism (underactive thyroid) can cause sensitivity to cold. Thyroid function tests can diagnose this condition, and if necessary, hormone replacement therapy can be prescribed.

Poor Circulation: Conditions like Raynaud's disease or peripheral artery disease can affect blood circulation, leading to cold extremities. Proper diagnosis and management by a healthcare provider are essential in such cases.

Stress and Anxiety: High-stress levels and anxiety can sometimes lead to feelings of coldness. Practicing relaxation techniques, such as deep breathing exercises or meditation, might help alleviate these symptoms.

Medications: Some medications can cause sensations of coldness or affect your body's temperature regulation. If you suspect your medications might be causing this issue, consult your healthcare provider. They can adjust your medication or dosage if necessary.

Nutritional Deficiencies: Deficiencies in certain vitamins and minerals, such as vitamin B12 or magnesium, can affect your body's ability to regulate temperature. A balanced diet or supplements, if recommended by a healthcare professional, can help address these deficiencies.

Inadequate Clothing: Make sure you're wearing warm, dry clothing before going to bed. Wet or damp clothes can make you feel much colder.

Letofeyd profile image
Letofeyd in reply toPaulbounce

Thanks. Most of these either have been checked out (e.g. thyroid, anaemia) or are not applicable, e.g. Reynauds - it is not my extremities that are cold, but my core.

I have only been experiencing it recently while on these meds - particularly the anticoagulant.

If I was chilly in bed before, a hot water bottle and a cosy blankie solved that straight away.

Now there is a definite 'inside' cold that these things don't reach.

Paulbounce profile image
Paulbounce in reply toLetofeyd

Hmmm Letpfedd. I doubt very much that an anticoagulant would cause this problem. Let others comment so you get a mix of opinions.

Paul

Blearyeyed profile image
Blearyeyed in reply toLetofeyd

Have you checked your blood pressure or heart rate when the cold feeling occurs. It's worth taking a cuff reading ( keep your BP monitor by the bed for ease) to see if you are suffering from any rapid decrease or increase.Sometimes , a sudden drop in blood pressure or heart rate can sudden coldness, especially if the drop takes you into a very short episode of hypotension or Bradycardia. Often sleeping with your upper body and head raised gradually on supportive pillows can help alleviate the problem if that is the cause. A sudden spike can cause sweating.

Some medications can cause mild symptoms like these when you lie down and although the symptoms may only happen for a few moments the coldness can take longer to improve.

Sometimes, because your heart rate and blood pressure are linked / regulated in part by your Autonomic Nervous system , the ANS, which also regulates sleep and temperature can also send the wrong signals to the brain occasionally and either causes you the sweats or shivers depending on which temperature it thinks you need because of your change in blood pressure or heart rate as you drop off.

One way to increase body heat caused by autonomic dysfunction is to sit up for a while and breath deeply through the nose filling the whole chest and tummy area for a count of 5 , then breath out through the mouth with teeth only slightly open ( you make a sort of hissy growl like sound). You do this for a minute as a beginner, upto to two minutes as you get used to the breathing.

A warm drink or warm , but not hot heat pad at the base of the neck also helps to increase how quickly the nervous system responds to build up heat again.

Having your kidney function ( electrolytes) blood test , Vitamin B 12, Vitamin D and Folates checked would also be useful if you haven't had those checked at the same time as tests for thyroid function or anaemia. Very low , borderline or deficiency results or imbalance in these can cause more of these autonomic symptoms . Even on a good diet taking certain medications and age related hormone changes ( in men as well as women) can mean you can become too low in these nutrients. If you have low normal figures they can still be too low and cause symptoms for individual people , depending on their full medical history.

Hope you find a solution soon , let us know what you find out , take care , Bee

Letofeyd profile image
Letofeyd in reply toBlearyeyed

Thanks for all these potential solutions, Bee! I wear a Fitbit all the time, so I can easily look at my HR.

Sotolol has lowered my heart rate, and my cardiology pharmacist did say that they did not want to increase my dose because it may lower it too much. So maybe just as I relax to sleep, my HR is dropping a bit too low. I will check that, and my BP, too.

I take Vitamin D supplement daily on doctor's advice because I was slightly deficient. I am also borderline anaemic and have been my whole life since I was a teenager, but I could not tolerate the strong iron supplement tablets.

That gives me a couple of things to investigate, but also solutions to try.🥰

I am having Minimaze in Tokyo in January, so hopefully after that no meds and I can see what's left to deal with.😉🍀

Blearyeyed profile image
Blearyeyed in reply toLetofeyd

Have you ever tried Iron Bisglycinate? It the active version which is gentler on the stomach and easier to absorb. They actually prescribe it in the Netherlands and Scandinavia because it doesn't have the side effects if Ferrous Iron products , which I also couldn't take.

You can't get it as an oral prescription on the NHS , unfortunately, my GP checked but you can buy your own supplement. I buy Solgar Gentle Iron . I only take one capsule a day with my Folate supplement and Vitamin C after breakfast to help absorption.

I have to have B12 supplements. I was constantly Deficienct in Vitamin D and had recurring anaemia for decades which they finally realised was caused by Vitamin B12 Anaemia. Neither the Vitamin D or Iron deficiencies improved much at all until my B 12 and Folate Deficiencies were finally managed.

Your Fitbit is usually ok for telling you your heart rate but aren't as accurate about your BP as using a cuff monitor because the BP reading is calculated using algorithms and your heart rate results . Sometimes you can have normal heart rate but low or high Blood pressure , or be tachycardic or Bradycardic but have normal blood pressure , and the smart watches don't take these health possibilities into consideration.

I am nearly always tachycardic with low / normal blood pressure . My watch will usually say I go to sleep an hour after I do and wake up an hour before I do because of these sorts of heart rate algorithms. So I find it is worth buying a basic recommended BP cuff monitor for BP accuracy.

What time do you take your medications ?

Just wondering whether not just dose but timing might be something that could help you reduce your night time lows.

Are you taking a supplement that contains Magnesium as well ?

Magnesium supplements aren't generally recommended for patients on certain medications like beta blockers or for those that suffer from hypotension or low heart rate because Magnesium also lowers your heart rate , particularly if it's taken in the evening.

It can also lower Potassium and Sodium levels which can cause these heart rate issues if you have got too low in these salts.

I have Chronic Dysautonomia anyway , but I found my autonomic nervous dysfunction got far worse when I had B12 and Folate Deficiencies , especially the swings in heart rate , temperature and sudden waking in the night.

Letofeyd profile image
Letofeyd in reply toBlearyeyed

No, I haven't tried iron in that form. I will look into that.Timing of meds might also be an issue I had not considered.

Usually I take them around 6am and 6pm, but last night I was delayed and took them around 9pm, so maybe I need to watch for a correlation between late meds and this cold attack.

I have a proper blood pressure machine I xan use for accurate bp, so I will do that, too.

All very good advice, Bee! Thanks so much.🌹

Tplongy profile image
Tplongy in reply toBlearyeyed

I can concur with Blearyeyed on the meditation. Although my cold was not “core” as yours, but it was in every other part of my body.. had to wear full body thermals…. So last winter when I first got into bed I did about 10 mins of really deep breathing and it was quite miraculous… I was totally toastie from head to toe after that …it really worked for me…

I hope your Dr can help you work thru it and get to the bottom of it for you as it’s obviously not good feeling like that ….

AAJJTt profile image
AAJJTt

Hi, I have often wondered about this too. Post heart attack and Afib diagnosis, I am now poly-pharmic, taking a number of daily medications. Generally speaking, I am fit and my annual check ups haven’t yet detected any other issues.

Since the start of treatment, I have definitely been more sensitive to the cold. Initially, although I am not clear why now, I thought it may have been related to the anti coagulation. Last year my anti coagulant was stopped but it hasn’t made any difference.

It maybe one of the other meds but I am now just resigned to the situation. It could encroaching ‘older age’ too but of course but there is nothing that can be done about that. The heating is on more, I wear more clothes and have started wearing slippers.

jeanjeannie50 profile image
jeanjeannie50

This is what I found on the internet:

Various vitamin deficiencies can cause you to feel so cold at night that it’s difficult to sleep. It is normally a lack of B12 and iron that can leave you feeling cold, as being deficient in these nutrients can lead to some of the issues we have mentioned above.

B12 can be found in chicken, eggs and fish, whereas iron is best found in green vegetables, such as spinach, beans or broccoli. According to Health, a regular intake of these vitamins can help you stay warm but also prevent issues such as hypothyroidism and anaemia. Dr Holly Phillips, the author of The Exhaustion Breakthrough, says “Iron is a key mineral that helps your red blood cells carry oxygen throughout your body, bringing heat and other nutrients to every cell in your system”.

Hope this helps a little.

Jean

jeanjeannie50 profile image
jeanjeannie50

It's a strange condition you have and I really hope that someone will answer your post to tell you how they solved the problem. I've only felt that coldness, in hospital, when I was on the worst day of my having covid. I know what it's like and it's hateful. These days I go to bed with a fleece over my nightie and if I need them bed-socks.

Will keep an eye out to see if I can see anything else about your inner cold and really hope you find a solution.

Jean

oscarfox49 profile image
oscarfox49

You don't say how much sotalol you are taking, nor how long you have been taking it, but certainly one of the side effects of this beta blocker, particularly if you take it last thing at night, could be to produce the effects you describe. I take 80 mg myself, but in two 40 mg doses morning and mid evening. I find this mitigates the worst impacts.

But particularly if you are relatively new to this drug it could slow your night time circulation enough to make you feel very cold. Could you try an electric blanket on the low setting? I find this is very helpful now the nights are getting colder?

Letofeyd profile image
Letofeyd in reply tooscarfox49

I take 240mg a day. 120mg morning and evening ( usually 6am and 6pm), and I have been on 8t for about 2 years now. I started on 80mg, but have had to have it raised after I caught Covid and my AF suddenly increased.No external heat really seems to touch it, so electric blanket wouldn't be any more use than my hot water bottle, I'm afraid.

oscarfox49 profile image
oscarfox49 in reply toLetofeyd

Of course none of us are medical professionals here, but from little I know I would say that 240 mg a day is a huge amount. I guess you will have discussed this with your doctor but I am not surprised you would be so cold with this amount. Why are you on Sotalol rather than one of the other more cardiac specific beta blockers?

Letofeyd profile image
Letofeyd in reply tooscarfox49

240mg is nit a huge amount. It is quite acceptable for Sotalol, apparently."The beta-blocking effect of sotalol is non‑-cardioselective, half maximal at about 80 mg/day and maximal at doses between 320 and 640 mg/day."

I do not tolerate drugs very well, and Sotalol is the only one we have found that worked, and on which I have few side effects.

All the other drugs we tried completely incapacitated me one way or another - severe dizziness, or constant crushing headaches etc.

I started Sotalol at 80mg a day, but unfortunately, when I had Covid and subsequently, my AF skyrocketed and the Sotalol became much less effective, so my team increased my dose.

It hasn't really helped, hence my need for surgery.

Singwell profile image
Singwell in reply toLetofeyd

I think if you are that cold at the core then there must be a clinical reason linked somehow to your metabolism. Book an appoinment with your GP and ask them to start digging.

Buffafly profile image
Buffafly

I am familiar with the ‘core cold’ but it usually happens when I am overtired and the only thing that helps is going to bed with loads of warm covers. I also sometimes wake up during the night feeling either much too hot or too cold. I have no idea of the cause though I have assumed it is a result of a change in circulation affecting my ‘thermostat’. I admit that’s probably completely unscientific and also probably doesn’t help you at all 😕

Cangelo629 profile image
Cangelo629

I also experience extrem core coldness I know to get up and jump in and take a hot shower it takes about 10 minutes but it helps immensely. I've had my blood work taken many times its excellent thyroid is in the right numbers just had second abation last week and for the first time in a ling time my first night home it happened. This all started when I started taken anti coagulation medicine Eliquis 💊 obviously my body was dealing with heprin from the ablation last weekend so I really think it's anti cogulation medicine related.

Letofeyd profile image
Letofeyd in reply toCangelo629

Thanks, Cangel! My bathroom is currently being renovated, so no hot shower for me ( - in fact, no shower at all!) until the tiling is finished.😄It helps to know that it isn't just me.😉

Stayfocussed profile image
Stayfocussed

I think it could be the blood thinner, have your blood checked to make sure it's not too thin

Letofeyd profile image
Letofeyd in reply toStayfocussed

I will be having routine blood tests shortly. They actually haven't tested me since prescribing me the Rivaroxaban, so it probably is about time they did.

Singwell profile image
Singwell in reply toLetofeyd

Anticoagulants are not blood thinners. Aspirin is a blood thinner. Anticoagulants simply slow down the process of coagulation, thus helping to prevent a stroke for AF sufferers.

BenHall1 profile image
BenHall1 in reply toSingwell

Well said.

ozziebob profile image
ozziebob

January not long now to your mini maze. Sending positive thoughts for your Tokyo trip, and please do report your experience back on the Forum.

Lots of Forum members are interested, as you may know. In the meantime I hope the suggestions already posted will help with your "core coldness".

Letofeyd profile image
Letofeyd in reply toozziebob

I will certainly report back. I am actually staying in accommodation with another lady patient, as we are both having the surgery a couple of days apart. Nice to have a companion in the same position.🙂There is a Fb page for patients of Dr Wolf in Houston and Dr Ohtsuka in Tokyo, if anyone is interested. There are lots of recent patients reporting their experiences at both hospitals, and more every week.

Word is definitely getting out, and waiting lists are growing for both surgeons, so I would advise those interested to start researching quickly to see if this procedure is for them.

I have to pay for the op, of course, but in Tokyo the cost it is accessible and the care is reported to be excellent.

Search Fb for "Wolf Mini Maze - live AFib free".

ozziebob profile image
ozziebob in reply toLetofeyd

Thanks for update. I fortunately I don't belong to Facebook by personal choice mostly based on my dislike of Zuckerberg. Consequently I sadly miss all the Facebook feedback re the mini maze and patient's experience.

So repeating your experience on this Forum is very important for members like me. Hopefully by the time I "need" such a procedure, it will be much more available via the NHS.

Hello, I take sotalol 80 mg twice a day. In the morning with no food, I don't get cold but in the afternoon before lunch (my food is rich in magnesium and potassium which lowers the heart rate). In the afternoon I get very cold hands with numb fingers if I stay seated. Doing some slow nasal breathing (Patrick Mc Keown or James Nestor have great books or youtube videos) and being active warms me up. I hope it helps.Thierry

Cha275rL profile image
Cha275rL

Have you tried having a warm bath before you go to bed. I am anaemic (I know you aren’t), and get very cold in bed, and I find that a bath is the only thing that helps.

Letofeyd profile image
Letofeyd in reply toCha275rL

No bath in my home any more, and I am actually without my shower at the moment, too, as my bathroom is being renovated.☺️ Relying on friends for showers. I usually do have a hot shower in the evenings, though.

Cha275rL profile image
Cha275rL in reply toLetofeyd

My bath is, unfortunately, being taken out next week, to make a wet room for my husband who has MND. I’ll miss it so much.

Take care and I hope you get something to help you with the cold.🥰

Letofeyd profile image
Letofeyd in reply toCha275rL

That is a lit to deal with. I hope it works better for you both when it is done.🌹

Cha275rL profile image
Cha275rL in reply toLetofeyd

Thankyou so much. 🥰

Make sure you’re not having throid issues, it and coldness go hand in hand.

Green_pink profile image
Green_pink

I am also getting really cold! I have AF and had an ablation a week and a half ago and it’s really only the last few days I can’t get warm. I’m on rivaroxaban too! Hmmmm. Also on Virapamil and sometimes Flecainide (PIP since ablation). I have had Reynaud’s for about a year but this is different, it’s a whole body coldness. I’m going to have a blood test next week to check if on everything, I’m suspecting it’s B12 deficiency like someone mentioned earlier. Will let you know if I find anything out. Please do keep us updated and good luck with the ablation.

Letofeyd profile image
Letofeyd in reply toGreen_pink

I have been better recently, thankfully. I agree - it is whole body, not extremities or peripheral. I am also having blood tests shortly, so we will see if anything pops up there.

BenHall1 profile image
BenHall1

Hi,

In the early days, following my diagnosis of paroxysmal AF back in January 2010, I had my party bag of drugs adjusted and two new ones were added, Warfarin and Bisoprolol. At the time and thereafter I self tested for my INR with Warfarin with the support of my surgery at the time. Bisoprolol was prescribed for me to be taken in the morning, the result of this was profound, random nose bleeds. Returned to my GP who then said well take it at night. Which I did, never had a nose bleed ever since. What I then found was bouts of incredible coldness within my body ( what you describe as Core ) AND, AND AT MY EXTREMETIES.

I used to have to go to bed, with a hot water bottle, gloves, socks AND AN ELECTRIC BLANKET FULL ON. I would then lapse into a deep, deep sleep for between 2 and 4 hours. I'd then wake up fully normal and of the joys of spring....... until the next 'hit'. Bisoprolol is a beta blocker used for heart rate control, but it does have some properties which make it useful for blood pressure control. Sotalol is an anti arrythmic drug AND does have some beta blocker properties BUT I don't think it quite fits the definition of a beta blocker per se. It's my long winded version of saying perhaps it is the Sotalol causing these issues of coldness you describe. Its almost as if you've been looking over my shoulder at my past medical history. 😱😱😂😂😂.

What time of day are you taking the Sotalol. I still think you should discuss this with your GP or if your Surgery has one, discuss it with your Surgery Pharmacist. In my experience he/she has a much wider skill set with drugs than the GP, who, after all is only a generalist with a different skill set to a Pharmacist.

John

Letofeyd profile image
Letofeyd in reply toBenHall1

I take my Sotalol morning and evening. I wondered if maybe it is the Sotalol causing the cold. Happily, I am almost 6 weeks post op from my WOP with Dr Ohtsuka in Tokyo, and I haven't had any AFib since my op.

So, I am expecting to wean off my Sotalol in another 6 weeks or so.🤩

Then, if the cold stops, I will know that the drug was to blame.

I hope you find some way to solve yours.🍀

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