Head discomfort with burning , tingling sensations and various other symptoms. Need help :(
Posted , 15 users are following.
Apologies about the length of this, however this includes all the detail
History
Condition first appeared at the end of August 2012 which was in an around a stressful period, relationship breakup and some recreational drug use. All drug taking ceased around this date.
To describe the condition in one line it is like having a mild cold accompanied by a unilateral (left side) head discomfort with unilateral facial burning/prickling (neuralgia) varying in severity day to day (sometimes shifting more centrally)
General - (An episode)
Can happen any time of year and usually lasts from 10-20days on average.
Usually 15-20 episodes per year
Some episodes can be much more severe and longer lasting than others
Some years can be worse than others however its seems to be getting progressively worse
Symptoms usually worse mid-morning to afternoon and usually improves by night
Within an episode, onset each day is usually once I've woken up and moved around before the discomfort appears and progressively gets worse and then gets better towards the end of the day
Episode usually starts with eyebrow tingling/burning/prickling sensation on left hand side then further symptoms develop
Symptoms of An episode (Red signifies the most prevalent and consistent symptoms)
Head discomfort
With the following (not always all):
Pins and needles and discomfort on left had side of head from front to back sometimes prickling sensation
Pressure, dull ache on top of the head (left hand side same place inline with temple)
Pressure/tingling/Crawling , dull ache on crown
Tingling/Burning/Crawling above left eye along and above the browline, sometimes stretching more central (ALWAYS)
Tingling/burning on left side below eye (upper cheek)
Tingling/burning on left side forehead
Other Symptoms (not always all):
Neck pain at back both sides
Some lower back and shoulder pain
Tinnitus - Short Bursts
Tingling feet
Muscle ache and lethargic
Feeling of spaced out and cognitive sluggishness, brain fog
Fatigued , extreme sometimes, with Yawning and tiredness
Cold like symptoms - post nasal drip (Runny/Blocked nose/Headache/Headpressure) - However I do seem to have this all year round
Coughing/Sneezing
Watery eyes
Feeling of ears being blocked
Irritability
Groggy feeling like having a cold/hangover
Feeling of derealisation
Jaw tightness and aching in front of ear - usually left side
Inability to concentrate and focus
Problems articulating things and finding right words
Trouble reading and writing with dyslexic style symptoms. Words wrong way round
Feeling Nausea
Excessive sweating
ALL SYMPTOMS HAVE VARYING SEVERITY WHEN PRESENT
2017 Diary of episodes
Jan 9th - 21st Jan (13days)
1st Feb - 9th Feb (10days)
21st Feb - 16th April (54days)
25th April - 28th May (31days)
6th June - 19th June (13days)
1st July - 15th July (15days) - milder than normal
26th - 1st Aug (5days) - milder than normal
2nd Aug (1day) - Severe
16th Aug (1day) - Severe
23rd Aug - 25thAug (3days) - mild
30th Aug -31st Aug (2days)
5th Sept - 21st Sept (16days)
2nd Oct - 18 Oct (16days) -mild
25th Oct -
*** Although an episode covers a period of time. Some days within a "period" are better than others and some days have no symptoms at all. I've also not included individual or short periods less than 3days unless severe which is quite common. I don’t end a period unless ive had 3 days clear of all symptoms ***
Possible diagnosis based on symptoms and various other consultants (suspected as more than one)
Tension Headache / Migraine
Allergic/Perennial/Non Allergic Rhinitis - Nasal Sprays no effect
TMJ / TMD / Bite Problem / Clenching - Mouth Splint not helped
Trigeminal Neurophatic Pain
General undiagnosed allergy - Nasal Sprays no effect
Diabetes - Blood Tests are normal
Thyroid Problem - Blood Tests are normal
Sinusitis - Seems to be too regular with no signs of infections or pussy discharge ever
Nasal Sprays don’t help and ENT felt it wasn’t Nasal
Stress / Anxiety
Atypical facial pain
Occipital Neuralgia
Atypical trigeminal neuralgia
CHRONIC PAROXYSMAL Hemicrania
Trigeminal neuritis
Cervicogenic Headache
B12 deficiency (Blood tests and vitamin B supplements didn’t help)
Historical Treatment
Painkillers including many strong ones (No effect) - (NSAID / Paracetamol / Codeine)
Annual eye examinations annually (All OK, slight discrepancy with one eye which has been there for years)
Steroid Nasal Spray (No effect)
Anti-Histamine Nasal Spray (No effect)
Anti-Histamine Tablets (No effect)
Decongestant Nasal Spray (No effect)
Oral Steroid Tablets (No effect)
Steroid drops (No Effect)
ENT examination with CT which said sinuses were clear
Extensive blood tests which are all normal over past 5 years (Including Diabetes / Thyroid) - Nothing found
Bowen Technique
MRI Scan of head only (All clear)
Neurology Appointment and prescribed Amitriptyline
Treatment (June 2017 - End of Aug 2017) - 3months
Bowen Technique for TMJD (Jun - Jul) - No noticeable help (Stopped)
Mouth guard by dentist for Clenching
Stopped all vitamins (Stopped)
Use neck supporting pillow at night
Look at posture (especially whilst working) and avoid opening mouth wide
Stop craning neck to look at phone or cradling phone between chin and neck
Reduction in clenching teeth when noticed and stopping resting head on hand
Reduction in alcohol
Look at stress reducing techniques
Reduction in sugar (July onwards)
Acupuncture for TMJD and Trigeminal Neuralgia 7 Sessions (Stopped)
Physiotherapy 5 sessions (Mid July - End Sept) - No noticeable help (Stopped)
Effect:
Collectively with all the above treatments I found some relief, however things returned to normal even with continuing all the above
Treatment (September 2017 - End of Nov 2017) 3months
All Previous Treatments unless specifically stated as stopped
Wear glasses where possible
Sinus cleansing (NetiPot) - Whilst going through episode
Bromelain 3 times a day (Nov-Dec)
VitaminB 1st Nov onwards
Allergy test (nothing conclusive)
Amitriptyline - 11th Nov onwards
Effect:
No relief as of yet
0 likes, 16 replies
fiona66001 graham190484
Posted
However I started with a severe headache after months of severe stress. And BANG. Headache from hell. Which subsided but I’ve been left with ALL of what you describe. My GP has just prescribed amitritilyne and and floxoetine. I have a MRI booked to look at my upper neck. And I had an MRI a yr ago on my head which was clear (sudden change in migraine prompted that. Nothing to do with this). But could this all be linked to severe stress and anxiety ?? I’ve literally had 7 and half weeks with no look of improving. I’m so depressed and down. X
sergio61521 fiona66001
Posted
ibrahim57343 sergio61521
Posted
Have you found any answers
sergio61521 ibrahim57343
Posted
suzi72654 sergio61521
Posted
Hi Sergio, I have a lot of your symptoms. It's been going on for over 2 months now. I was first diagnosed with a migraine and given Fioricet for pain....no help at all. I went back to doctor and now they say its a severe sinus infection and I was put on prednisone and sinus meds and nasal spray. Again, no help and my symptoms were getting worse. I'm awaiting a CT scan as now my doc is pretty sure I have Trigeminal Neuralgia. I have the burning, prickly, numbing and pressure pain on my forehead, eyebrows and all thru the scalp. Sometimes the burning can go on for 2 hours and other days its hit and miss and only lasting a few seconds. It feels like a hot iron sitting on the top of my head. I just started a few days ago with the pins and needles sensations on my arms, hands and legs. UGGGH!!! I don't know what's going on with that. I TRULY feel your frustration. I am constantly irritable. I am currently taking Carbamazepine 100 mg two a day and then to increase it to two tablets twice a day. (Just started yesterday). And so the journey begins...(sigh).
beeberlla graham190484
Posted
Hi Graham
I know your symptoms too well and feel for you . Have you had a very stressful life leading up to these problems? My symptoms are due to severe stress for 17 years, work, caring , grief and always pushing myself.Poor computer posture and a couple bouts of the flu left me now, with a stiff neck tingling and nerve type headache on left side for 3mths. I have developed anxiety & melancholy , which tightens the muscles and doesn't allow any healing, a vicious circle. I have found relief with massages& meditations , some free on youtube and ph app Smiling mind and a 1 mth course of mindfulness. Any work on my neck irritates the pain and tingling. My tinnitus started years ago so i haven't done anything for it. I've had all the tests but my neurologist has booked me in for a spinal mri. Complete relaxation , gentle massage , good diet daily walks, yoga and no computer work or anxiety would help me recover. But will wait on my spine results. Thank you for sharing your story, it has helped me and I hope mine can help you in some way. Bee
graham190484
Posted
Sorry about slow reply.
Just an update. So the amitriptyline made me initially “a bit better” for the first 4wks however as my “condition”
Is episodic it could have been giving me a break anyway. After 4wks I started to go down hill a little bit, more fatigued and usual symptoms back by week 6 which is where I’m told the therapeutic effect of the amitriptyline should be fully effective. Anyway Christmas time I decide to just stop and felt pretty good for the whole period. However in the new year a started to feel a bit rough and contacted the dr. He was annoyed about me stopping amitriptyline and convinced me to restart and up the dose. The plan was to start for 1wk back on 10mg and up it after a week. However I never made it that far. Each day i was a totally mess, groggy, spaced out, tired. I preserved but my symptoms didn’t get any better after 4day. I stopped the amitriptyline 2days and feel better but not 100%. My plan is to push through the withdrawl which I’m told can last a few weeks and look at other non drug therapy options. I’m booked in for CBT and am really going to look to address stress and anxiety. This is the one item that comes up a lot that is probably the most difficult to try and tackle. Anyway I’ll keep you all posted.
ibrahim57343 graham190484
Posted
Iam going throw the exact same situation have the same in pain and disscomfort affects my face head leg even hands
All started after break up with my x went throw an mental break down in 2016 then had an car accident which that made thigs even worse
I was said it can be trigeminal neuropathic pain occipital neuraligia central sensitization syndrome
I was put on alot of drugs nothing seems to help ive gone of all drugs just on supplements and herbs now like cbd
Get small relife of them and doctors are still investigateing
Iam 32 live in london uk this has robed my job life freinds everything from me in constant pain and vey sever flare ups lasting 3 weeks or more to calm down to normal manageble pain
Have you had any relige or answears what this could be
shak2340 ibrahim57343
Posted
j93943 graham190484
Posted
I'm so sorry other what you are going through!!!
You should try Ultimate PAIN Fighter it has gotten rid of my headaches faster than anything else!!!!!!!
I suffered for years with migraines and headaches and now whenever I feel a headache coming on I put on UPF and it relieves it usually in less that 5 minutes!!! NOTHING has ever worked that fast for me!!!!! Now I use it for everything that hurts or bothers me!!! The best part is there's no drugs in it so no weird side affects You just gotta try it it's awesome!!!
Aj1986 graham190484
Posted
Aj1986 graham190484
Posted
All the doctors I’ve been to have told me it’s stress and anxiety, one day after a very stressful event I had a massive episode of tachycardia that put me in the ER. For 2 months straight I was fixated about my heart and started taking beta blockers and the crazy thing is the day the episode of tachycardia happened till today two months later I haven’t had any significant symptoms like you mentioned above it’s like I was completely fixated on my heart that I didn’t have any symptoms if that makes sense.
now that I’m no longer fixated on my heart as much I’m slowly getting those symptoms back( facial tingling, head pressure, brain fog etc)
i found probitics and magnesium to help a lot with everything.
Please let me know how you are holding up
ibrahim57343 Aj1986
Posted
I was given ciprofoxin for uti, 500 mg before all these problems started , i know were your comeing from , floxed symptoms antibiotics posioning ,
Please message me if your from uk 07956151182
sergio61521 graham190484
Posted
Looks like we could be twins. I also have similar symptoms as you but a times I get a sharp pain in my head and that’s when my symptoms start with the burning in the eyes, forehead and prickling sensations around upper face . At time s my sinuses will feel stuffy and make it hard to breathe. Ive also been to many different doctors from primary, cardiologist, ENT and also to a neurologist. I’ve had many blood tests done with all negative findings. Had a MRI done on spinal and brain with negative results. No lesions or signs of MS! I’m very frustrated with this and just wondering what the update is on your progress. Thank you!
terri06621 graham190484
Posted
Hi GRAHAM
Here to i been suffering thru the are craziness. I've been to 4 different Neurologists, ENT, scans n blood work and all they come with is atypical facial pain. Until one day in my PcP office I sat thru an episode my PcP witnessed. He said Terri I think yoi have SUNCT EADACHE SYNDROM. What the neck is that?
Went home n looked it up, sure enough all I've been suffering thru. I get an episode 2x a year that lasts maybe a month. No meds here although the treatment for it us as same as the trig neuralgia. Nothing they prescribe works for you but certainly against your body.
I see a massage therapist and chirp. Use natural meds n creams and go with it and by no means do I consider myself a strong woman in pain. But I make it and will to i can't stand it no more. But I think my PCP hit the nail on the head. And as I told the neurologists this story they have no clue what SUNCT HEADACHE SYNDROM IS. Smart docs don't know it all I guess. Good luck...