Mild pains in areas of head: Ever since I was... - CLL Support

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Mild pains in areas of head


Ever since I was diagnosed with CLL (over a year ago) I have had mild pains in various areas of my head. I thought it was probably sinus related, but sometimes it is in my scalp, so that doesn't seem like it could be sinus-related. It may be around my eye, ear, nose, teeth, etc. Usually only lasts a day or two in a particular spot, but I can almost always find a spot somewhere on my head that is a little tinder. I was just wondering if anyone else had similar symptoms. My Dr. hasn't really had any answers, and doesn't seem concerned.

18 Replies
CllcanadaTop Poster CURE Hero

My guess, its a trigeminal nerve.. and might be shingles without a rash... known as Zoster sine herpete. It can be very painful... but no rash or blisters ever appears. Ask for a treatment of an antiviral for herpes like acyclovoir or Valtrex, and see if it resolves...


Hi doazoo...For almost a year now I've had mild pain in various areas of my head when I go to bed. Don't have a headache during the day, but the minute I put my head on the pillow I'd have pain in the areas you talk about. And, come to think about it, it hasn't been too bad recently. Come and go. Sometimes there big time, some times just a little pain. I told my doctor and she would ask me each time I saw her about the 'headache', so I don't know what to think. I just started Imbruvica today, will see what is resolved as time goes on. Carole

doazoo in reply to ladyprescott

I’ve been on imbruvica for a year. CLL in remission - still these pains make me worry some.

My hubby had Shingles last year and it was all in and on his head, very painful and since diagnosis of CLL a couple of months ago he has been informed by the specialist this could come back, if it does he has to have a maintenance dose of an antivirus drug, trying hard to think of the name but all I can remember is it starts with an A. My suggestion would be a visit to your GP for his professional advice, mention Shingles to him.

Agh! Post disappeared. Start with Chris's advice. Shingles can cause permanent damage. Then try an ENT and a dentist familiar with TMJ syndrome (caused, usually, if you grit or grind your teeth at night). You don't mention whether you have lymph node involvement. They can press on nerves and cause pain also.

I believe mine is related to a lymph node I have on the back of my neck left side just under my skull. I can press on it, move it, and sometimes feel something in my head. I think it may be the trigger point and pressing on a nerve. Since it hasn't gotten any worse and in fact has somewhat subsided, I don't think about it too often.

I had this prior to my diagnosis 10 years ago. My doctor requested a full blood test and then sent me to a Haematologist specialist. I was just taking Ibuprofen at the time. It eventually disappeared and has never returned.

I have shingles, in my 4th week, very itchy rash on my back and nerve pain, feeling really rough, haven't been out of the house. Dr said I was too late for antiviral tablets when I saw him, they only work if taken in first 3days

opal11uk in reply to Spiritlove

yes, true however if you have CLL it is advised to take a low maintenance dose to stop it recurring, this was said by the Specialist treating my husband, hopefully it will clear up soon but if it does come back please go back to your gp, also please remember you cannot have live virus vaccination for Shingles if they decide to vaccinate against future 'attacks'

Spiritlove in reply to opal11uk

Oh my GP must be bit useless, said nothing he could give just to take painkillers and put cream on rash. You have been better treated

opal11uk in reply to Spiritlove

I think the anti virus drugs are called Accivor, so if it doesn't go away or in fact returns mention this to him. The information given to us was by the Specialist Heamatlogist

Spiritlove in reply to opal11uk

Thank you. My GP should have taken more notice as I have CLL

opal11uk in reply to Spiritlove

Sadlly GP's have limited knowledge, thats why they send us to the hospital lol I have a 20 year old condition know as Atrial Fibrillation, caused a stroke and has been a pain in the backside ever since, now have a trusty pacemaker and life is much better but I had to explain this all to my GP as he had almost no knowledge of this condition whatsoever anyway good luck, hope the nasty Shingles goes away soon as I know how painful it can be.

Spiritlove in reply to opal11uk

Oh sorry to hear this, my Dad had the same with pacemaker and blood thinners so I understand. GP never considers my CLL. Take care x

MsLockYourPostsVolunteer in reply to Spiritlove

Wow! Your doctor should have known to get you on medication immediately. My PC, the couple of times I had a shingles scare, called in an antiviral immediately and worked me in later in the day. Her feeling, as much as we are both against overuse of meds, is that if shingles is a possibility it's better to get on to something and be wrong than to not start something and find that shingles was, in fact, the case.

I would have a discussion about shingles with that doctor now, and if you aren't comfortable with the response, I'd start looking for someone new!

Thanks for the advice. I think your Dr's in America are far more on the ball than ours in the UK

Have you ever had problems with your neck? I get strange pains now and then in the scalp and behind the ear, including migraines, which usually trace back to the neck.


Hi, I've never experienced any pain but I have experienced "bumps" on my scalp - usually on the back side. They're quite hard and about the size of a lima bean. They usually go away but no one's been able to explain what it is. Anyone else have this experience? (Sorry, Daozoo, not exactly addressing your question - but somewhat related)


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