Burning Brain Headache: Have had Fibro... - Fibromyalgia Acti...

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Burning Brain Headache

AlegnaB profile image
13 Replies

Have had Fibro for many years now and apart from exhaustion the other symptom I find I can barely withstand is a burning stinging in my head that reaches from my scalp right down through to my gums. I need to wash my hair but cannot bear the thought of touching my scalp. It feels like it is literally on fire. Does anyone else on here suffer with this dreadful symptom and if so how do you manage it? Kindest regards to you all. Angela x

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AlegnaB profile image
AlegnaB
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13 Replies
DanielleGemma profile image
DanielleGemma

Hey Angela,

I a little confused with your post sorry Fibrofog has swept in again today! I think you also have headaches (from your title) as well as the other feelings? With headaches I actually went to the doctors and was put on a Migraine blocker which I found caught most of the headaches, I also try and force myself to drink loads of water and I got my daith pierced which I was very skeptical of but has really helped a lot xxx

AlegnaB profile image
AlegnaB in reply to DanielleGemma

Hi Danielle.. you are confused??.... I am totally FLUMMOXED! Yes it is pain but also feels as if my scalp has been cremated. I drink lots of water throughout the day so it's not that. I have heard of daith piercing but does that mean one or both ears? This hell can last for weeks or even months. I already have had a brain scan which showed abnormalities in the white matter in the exact areas where the pain is at it's worst but have been informed by the consultant that the pain is NOT caused by the abnormalities!!! Confused.com!!! I just do not know which way to turn. Thank you for replying.. really appreciated X

DanielleGemma profile image
DanielleGemma in reply to AlegnaB

Haha yes I can completely imagine! I have my daith piercing in my left ear only (just has to be one side) If you favour a side when you sleep, pick the other haha! I will say it was a very painful piercing and the healing process is slow and sore but it has done wonders for my headaches! WHAT that makes no sense - have you had a second opinion? Xxx

Shazzzy profile image
Shazzzy in reply to AlegnaB

Hi Alegna, do you think it could be migraines? I have had chronic migraines for about two decades, they have got worse with age. I also had Mri scan which showed white matter lesions. I was told it was the damage in my brain caused by the severity and longevity of migraines. Even had one that caused temporary paralysis, leavingnone side of body weaker than other. Another possibility is neuralgia which is extremely painful and can cause different sensations in face and maybe scalp too. Hope you find some relief soon .

AlegnaB profile image
AlegnaB in reply to Shazzzy

Yes indeed.. I was told that I had had a stroke and was kept in the stroke unit for 9 days. Then had another team of specialists from a different hospital look at the MRI results and was then informed that the abnormalities was due to ageing. Been having these headaches since my 20's but getting worse as time goes by. Feeling like I want to rip my scalp off completely!

Shazzzy profile image
Shazzzy in reply to AlegnaB

Yes, I had the stay in stroke unit too, I used to want to rip my head off, but although I'm getting more of them the intensity has gone down a bit, thank God. The neurologist put me on nortriptyline, 4 each night, have you tried this ? I was on gabapentin but recently stopped as I didn't think it was worth the confusion and weight gain.

AlegnaB profile image
AlegnaB in reply to Shazzzy

I was prescribed Amitriptyline but cannot remember dosage. It completely numbed my head. Possibly dosage too high. I have an appt with my Gp later this pm so I await with bated breath!!!

Shazzzy profile image
Shazzzy in reply to AlegnaB

I could not take amitriptyline way to out of it nortriptyline not as strong.

AlegnaB profile image
AlegnaB in reply to Shazzzy

Saw my Gp and he is referring me for a brain scan. Also referring me to a neurologist re. headaches... I am already one of his patients as I have Botox injections into my neck muscles every 10 weeks for Torticollis so hopefully I won't have to wait too long for this appt.

AlegnaB profile image
AlegnaB in reply to AlegnaB

Ps... Forgot to mention that he also prescribed amitriptilyne...Just 10mg at night.

Dizzytwo profile image
DizzytwoModerator

Hi there AlegnaB I feel for you that sounds like horrible pain to deal with. Have you spoke with your GP about it? Is it possible your suffering with some kind of nerve sensation in your scalp. There is a thing called Burning scalp syndrome it may be worth checking it out. xx

Mo

rosewine profile image
rosewine

I have a burning sensation across my back most days it is as though my skin and muscles are on fire. I can imagine having this across your head must be absolutely horrendous. I wish you could find a solution to your problem. I have found that Pregablin has helped reduce the symptoms from when they first started but unfortunately hasn't eradicated it all together.x

AlegnaB profile image
AlegnaB in reply to rosewine

Thank you for your reply. I have been on Pregabalin but all it did was expand my middle by approx. 1 1/2 stone. I have tried Tramadol.. which works but I am in a state of 'DAZE' and causes shallow breathing which was v frightening indeed. I take Paracetamol but it does not even scratch the edges so to speak! I'm totally flummoxed as what to do next!!

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