Do you get a lot of heat in your head with a ME headache?

[AliceLily]

One of my most prominent symptoms of ME has always been a headache. After a week of overdoing the headache has flared up the last two days, with nausea, sore eyes, achy sinuses, and feeling ill.

The last few years I have found Diclofenac sodium at 75mg 1x very helpful. I was prescribed this by an A&E doctor when the headache suddenly turned into vomiting within a few hours. I need to get some more as I have run out of these tablets and really missing them. I have some over the counter voltaren tablet but nervous about using them. I'd rather get the prescribed kind because I know I won't get any side effects from them.

How would you describe your headaches? I always get a lot of heat in my head when I get the ME headache, do you experience heat also? Why heat? What could be causing the heat with the headache when I get PEM?

I may not be able to reply everyone but thanks for any comment.

 

[MerryB]

Curiously my ME has never caused headaches. I do get mild headaches now but they are a side effect of my POTS medication.

When I'm not medicated I do get a horrible inflamed feeling in my head though, which is triggered mostly by sound and is extremely uncomfortable - unbearable. It's not so much pain as a horrible inflamed feeling.

I don't know what causes it for me. It feels like sound vibrations trigger inflammation in my brain, but of course I've never had that tested.

I think cerebral hypoxia may play a role in it for me too.

My brain feels much better when my POTS is treated and I find Nortriptyline also helps these symptoms to calm for me.

Sounds like my symptoms are a bit different to yours though?

 

[Kitty]

I have some over the counter voltaren tablet but nervous about using them.

Diclofenac is just the generic name, Voltaren or Voltarol is a trade name. If it's diclofenac sodium (as opposed to diclofenac potassium), it'll be the same thing. The pharmacist would be able to confirm, though.

I hope you get some relief from your headache soon, it sounds horrible. I never get them unless I have a really nasty bug, but they always turn me into a grumpy toddler!

 

[lunarainbows]

Hi Rosie I would like to reply more to this later on, but yes this is one of my *most* prominent symptoms - that heat feeling in my head with headaches, inflamed sort of weird feeling. I thought it was just me!

Will reply later with what I’ve tried so far / also seeing a neurologist hopefully and asking about this, so will report back about heat.

 

[AliceLily]

@MerryB Thanks for your thoughts and experience.

@Kitty Yes, the headaches sure make you feel grumpy, just got to shut your eyes and can't do anything.

I did check with the pharmacist when I bought the voltaren over the counter. I asked what the difference was and she said the difference were the 'salts'. I don't know if that difference could be a problem for me. I've had scary side effects with some medication - so get anxious when trying something I haven't tried before.

 

[AliceLily]

Hi Rosie I would like to reply more to this later on, but yes this is one of my *most* prominent symptoms - that heat feeling in my head with headaches, inflamed sort of weird feeling. I thought it was just me!

Will reply later with what I’ve tried so far / also seeing a neurologist and asking about this, so will report back about heat.

Thank you @lunarainbows Take your time to reply again, no hurry. Good to know someone else gets this kind of headache and not just me. Though sorry you experience it too.

 

[Kitty]

I did check with the pharmacist when I bought the voltaren over the counter. I asked what the difference was and she said the difference were the 'salts'.

Yes, that's because it comes as Diclofenac sodium, or Diclofenac potassium. The potassium version apparently works quite a bit quicker than the sodium version.

(I was prescribed it for a short while after an injury, and the pharmacist commented aloud that he was surprised I hadn't been given one version over the other; this is the only reason I know there are two versions.)

ETA: Might physical cooling with some ice cubes wrapped in a tea towel help with the heat sensation? I've never experienced it, but a friend who suffers from headaches finds cooling helpful.

 

[AliceLily]

Yes, that's because it comes as Diclofenac sodium, or Diclofenac potassium. The potassium version apparently works quite a bit quicker than the sodium version.

(I was prescribed it for a short while after an injury, and the pharmacist commented aloud that he was surprised I hadn't been given one version over the other; this is the only reason I know there are two versions.)

ETA: Might physical cooling with some ice cubes wrapped in a tea towel help with the heat sensation? I've never experienced it, but a friend who suffers from headaches finds cooling helpful.

@Kitty I've just looked at the over the counter packet I have and it is Diclofenac potassium. Each tablet is 25mg, which is a third of the dose I normally take with Diclofenac sodium. Interesting that it is more fast acting - that would be even better.

Yes I do use a cold compress (face cloth) it takes hours and hours though. It's amazing the amount of heat that comes out. I really do need to add ice to speed things up. Many thanks Kitty for all the helpful info.

 

[Invisible Woman]

Yes, I sometimes get that hot or heated feeling too

With regard to a cold compress I sometimes use an icepack (a sports type gel one) wrapped in a teatowel.

Also you can get cooling mint roll on gels or creams from chemists here that you can have in your bag or pocket when you're out and about. They also do stick on forehead compresses aimed at migraine sufferers.

 

[AliceLily]

Yes, I sometimes get that hot or heated feeling too

With regard to a cold compress I sometimes use an icepack (a sports type gel one) wrapped in a teatowel.

Also you can get cooling mint roll on gels or creams from chemists here that you can have in your bag or pocket when you're out and about. They also do stick on forehead compresses aimed at migraine sufferers.

I have got one of those sports type gel ice packs in the freezer but forgot to use it the last few days. One thing that really gets me with ME is that I need reminders about what to do when some particular ME symptoms hit hard, So, I bought a notebook a few months ago and started to write all the things I found helpful and things to do to help me get through. I really need to keep the book on the bedside table to remind myself.

I'll check out those cooling gels they sound good.

It doesn't sound like many of us get the heat part of a headache though.

 

[Invisible Woman]

It doesn't sound like many of us get the heat part of a headache though.

Migraines aside, I always tended to put the heat bit down to inflamed sinuses or allergies. I don't actually know if it is due to that though.

I need to keep the book on the bedside table to remind myself.

That's one of the horrible things with ME. Sometimes you're suffering so much all you can do is lie down and go through it with zero spare capacity to think of things that will help. Even though there may be things that might.

 

[Snow Leopard]

I wouldn't really describe my headache as a lot of heat in my head, but hot days do make it worse. *shrugs*

Just a note to anyone considering Voltaren, be careful with it. It nearly killed two of my family members, due to thrombocytopenic purpura. (a supposedly rare reaction...)

 

[AliceLily]

I wouldn't really describe my headache as a lot of heat in my head, but hot days do make it worse. *shrugs*

Just a note to anyone considering Voltaren, be careful with it. It nearly killed two of my family members, due to thrombocytopenic purpura. (a supposedly rare reaction...)

I didn't know about this but I have always known to go very easy with Voltaren. I've seen and heard about many getting upset stomach and vomiting with taking a longer dose. I only take one dose about twice a week at the most. And some weeks none at all.

Thanks for mentioning this @Snow Leopard

 

[Diluted-biscuit]

I have that hot feeling in my head today, without a headache though!

 

[AliceLily]

I have that hot feeling in my head today, without a headache though!

I wouldn't be surprised after what I experience @Diluted-biscuit . My ME seems to have always caused a lot of heat that I never experienced before ME.

 

[Diluted-biscuit]

I wouldn't be surprised after what I experience @Diluted-biscuit . My ME seems to have always caused a lot of heat that I never experienced before ME.

My body gets so hot over the last year, the worse I feel the worse the heat. I don’t have a temperature but I feel incredibly hot and my partner says she can feel the heat radiating off of me. It’s all very weird.

 

[AliceLily]

My body gets so hot over the last year, the worse I feel the worse the heat. I don’t have a temperature but I feel incredibly hot and my partner says she can feel the heat radiating off of me. It’s all very weird.

Yeah, same here. My temperature is always normal whenever I have taken it - which is not a lot. Weird illness.

And then there is the chills that can come also with some PEMs.

 

[lunarainbows]

Hi @Rosie im just replying a bit more as promised. I was hoping to seek a neurologists opinion but unfortunately everything has had to be put off for a while until I get my stomach pain and gallbladder sorted out as that’s become more urgent. So I don’t have any news from the neurologist side of things.

but yes I’ve had this symptom since I first got ill. One of my most prominent symptoms, and one of the things that was there when I first realised I was ill - my face would feel boiling hot, and I would feel really ill, I had to have a fan blowing on my face constantly. I use Kool N Soothe patches, for the past 4.5 years I’ve been using at least 1-2 patches a day on my forehead. I wouldn’t cope without them. I took them out with me if I had to go out in the past. Really cools my head down with a strong chill. A fellow migraine sufferer recommended them to me.

I did a bit of research into it. I’ve concluded that it possibly may be related to the autonomic nervous system / vague nerve side of things as I’ve heard that for vagus nerve related studies they do things like exposing people to sudden cold temperatures or dunking head into cold. I find that if exposed to a sudden blast of cold, when I’m feeling very hot like this, I actually feel kind of “well”. I also get the hot head and headache when I am more generally unwell with ME. And I get it more when I get migraines too. It may also be related to hot flashes which I think are related to hormonal imbalances.

I have noticed - since starting Ivabradine (on 15’mg), these hot headed feelings have reduced. I don’t know why exactly but there’s posts on other PoTS and cardiology related threads here about how these meds help blood flow to the brain. For whatever reason, that is helping, but it hasn’t taken it away.

In general, even before becoming ill with ME - I had issues with temperature control. Especially feeling very hot and overheated in my head and even in my body. My mums also had the same all her life. So I think there’s a genetic element in there too and weirdly I was told at my autism assessment quite a few autistic girls (and boys?) have this issue with feelings of temperature control and feeling hot (even if temp isn’t actually raised). So again perhaps links in to the neurological side of things.

so I don’t really have any answers to this, except my own little bits of research and ideas. I think it’s linked somehow to ME and headache/migraine as when ME is worse, or I’m in bad PEM, hot head and migraine/headache gets worse. So far all I do is try to reduce activity when it happens, lie down and cool down room with fans on and put Kool N Soothe patches on and take paracetamol. I hope when I see the neurologist, he has more answers and possible treatment/meds.

ETA This is the Kool n soothe, they are a godsend for me. Cold compresses come nowhere close!

Amazon product ASIN B000KU954M

 

[AliceLily]

Hi @Rosie im just replying a bit more as promised. I was hoping to seek a neurologists opinion but unfortunately everything has had to be put off for a while until I get my stomach pain and gallbladder sorted out as that’s become more urgent. So I don’t have any news from the neurologist side of things.

Thanks @lunarainbows I know you have a lot going on at the moment and I am thinking of you.

but yes I’ve had this symptom since I first got ill. One of my most prominent symptoms, and one of the things that was there when I first realised I was ill - my face would feel boiling hot, and I would feel really ill, I had to have a fan blowing on my face constantly. I use Kool N Soothe patches, for the past 4.5 years I’ve been using at least 1-2 patches a day on my forehead. I wouldn’t cope without them. I took them out with me if I had to go out in the past. Really cools my head down with a strong chill. A fellow migraine sufferer recommended them to me.

It's one of my first symptoms when I got ME as well. Unusual heat. Feeling unwell, something wrong. It was all going to get a lot worse as I got to severe ME.

I did a bit of research into it. I’ve concluded that it possibly may be related to the autonomic nervous system / vague nerve side of things as I’ve heard that for vagus nerve related studies they do things like exposing people to sudden cold temperatures or dunking head into cold. I find that if exposed to a sudden blast of cold, when I’m feeling very hot like this, I actually feel kind of “well”. I also get the hot head and headache when I am more generally unwell with ME. And I get it more when I get migraines too. It may also be related to hot flashes which I think are related to hormonal imbalances.

Good on you doing some research into it. I am not very good at this. Yes, cold helps and yet sometimes I feel it can add increase this symptom in that winter stirs up immune like deterioration, sinuses, headache, chills, weakness. I've always had sinus problems with my ME. I seem to get flare up of a staph infection in the nasopharynx. I was able to see the infection when the ENT specialist put the camera up my nose. So I have to be very careful when this flares up. I think it could have been this infection that got seriously out of control in my first years of severe that gave me the painful head for a couple of years.

But in saying this I also think there are other things contributing also like, as you say, hormone imbalances. I was meant to see a private specialist about my hormones but never found the money to go and this particular specialist has since died.

I have noticed - since starting Ivabradine (on 15’mg), these hot headed feelings have reduced. I don’t know why exactly but there’s posts on other PoTS and cardiology related threads here about how these meds help blood flow to the brain. For whatever reason, that is helping, but it hasn’t taken it away.

I haven't heard of Ivabradine and will check it out. Sounds like you tolerate it alright.

In general, even before becoming ill with ME - I had issues with temperature control. Especially feeling very hot and overheated in my head and even in my body. My mums also had the same all her life. So I think there’s a genetic element in there too and weirdly I was told at my autism assessment quite a few autistic girls (and boys?) have this issue with feelings of temperature control and feeling hot (even if temp isn’t actually raised). So again perhaps links in to the neurological side of things.

Same here. My Mother went through menopause pretty well but I have noticed that she comes over hot like I do and she is in her seventies now. I think we with ME are probably getting a mixture of things that are contributing and not just hormones?

so I don’t really have any answers to this, except my own little bits of research and ideas. I think it’s linked somehow to ME and headache/migraine as when ME is worse, or I’m in bad PEM, hot head and migraine/headache gets worse. So far all I do is try to reduce activity when it happens, lie down and cool down room with fans on and put Kool N Soothe patches on and take paracetamol. I hope when I see the neurologist, he has more answers and possible treatment/meds.

I find diclofenac good when I get a very bad headache but just take the one dose and am very careful not take any more than 2x a week at the most. I can go weeks without needing it. I also take Panadol but Paracetamol probably would be better.

ETA This is the Kool n soothe, they are a godsend for me. Cold compresses come nowhere close!

As soon as I finish this post I will write that down to get. It sounds very good. Thanks lunarainbows.

 

[lunarainbows]

@Rosie oh yes I’m similar in the winter.. I don’t feel well in sustained cold temperatures at all. It’s just when I’m feeling very hot and weird head feelings - at that point if I am then exposed to cold, I feel good and “well”. But then a short time after that, the temperature needs to go back to a normal, perfect suitable temperature for me to feel ok. If it stays too cold I’ll start shivering! I’ve really got temperature regulation issues!

Ivabradine was prescribed by my consultant cardiologist (and specialist in PoTS).

I think paracetamol and Panadol are the same thing - panadol is just the brand name for a brand that makes paracetamol tablets. I usually get Sainsburys paracetamol tablets as they’re quite small and easy to swallow!
hope you find Kool n soothe helpful. They’ve been amazing for me. As they only go on the forehead so seem to cool exactly where I need it!