DAILY HEADACHE - FACE & TEMPLES - BURNING ALL DAY LONG !!!

[SPEEDSNEED]

Hi

[Lizzydrip]

Hi Richard, welcome to Healing Well, I have every sympathy with you over the burning pain as my migraine attacks feel like there is a red hot poker in the corner of my left eye and the burning sensation radiates around the left side and stops at the centre of the back of my head. I would be interested to hear about the meds you have tried, and have you seen a Headache specialist? Keep posting and we will support you as best we can, best wishes Ann.

[mrs_mac]

hi Richard and Anne

i really feel for both you guys!!!!

My Husband suffers from Cluster Headaches and has the same kind of pain that you describe Ann!!!!

Richard have you seen a neurologist to try and find out what is going on?

what meds have you tried, just re read and see you are going to post that info (duh!!)

any way, if i can help in any way please just ask, even if it is just to let off steam!!!!

tc sandra xxx

[mrs_mac]

hi richard, have been asking some friends of mine about your headaches and there are a few sites you can have a look at, they may give you some answers. but again, i really think you need to see a neurologist if you haven't already done so for a propor diagnosis!!!!


http://www.tna.org.uk/

http://www.patient.co.uk/showdoc/23068836/

and

http://headaches.about.com/sitesearch.htm?terms=Hemicrania%20Continua&SUName =headaches&TopNode=16307&type=1

i hope you find these of use to you

take care

sandra xxxx

[Lizzydrip]

Hi Sandra, Thanks for responding to me too. How often does your husband experience these attacks, mine average about 2-3 per week. I am on a very very long waiting list to see a Neuro who is a Headache Specialist - I have already seen 3 different Neuros - I have suffered with this for 30 plus years - thankfully not continuously at a rate of 2-3 per week, that rate has been building over the last 10 years!

I have tried Sanomigran, Propranolol, Epilim, Methysergide as preventatives and paramax, migraleve and now sumatriptan for attacks and sometimes ibuprofen. My GP has now got me on Amitriptyline for prevention and is considering that I may have an anxiety disorder that this will help with.

Thanks again for posting back, take care Ann

[mrs_mac]

Ann

Andy also experiences then on average 2-3 times a week, but can sometimes have them every day for about a week at a time!!!

is the sumatriptan helping?

where and who is the neuro you are waiting to see?

just another question, does your eye close, swell or go red, and does your nose get blocked at all?

sandra xx

[Lizzydrip]

Hey Sandra, yes my eye drops until it closes becoming almost paralysed!!...feeling almost numb and heavy with fluid and looks puffy almost like I'm having a stroke! My nose does block up on my left side, but then I have Allergic Rhinitis(Hey Fever) all year round too. My eyball goes somewhat bloodshot and seems to bulge a little too.

The sumatriptan does work, and has been the only thing that has ever brought real relief, I administer the injections myself! Although it does not work quite as thoroughly as when I first started on it (15years ago or therabouts when it first came out), but is working better now I am on the Amitriptyline!

The Neuro is Prof Goadsby at the London Hospital of Neurology, I know I am on the waiting list but it is soooooo long!!

Take care Ann.

[mrs_mac]

hi Ann i really think you should check out OUCH UK, i am no dr, but it sounds very much to me like Cluster Headaches!!

Andy has also been to see Prof Goadsby, he is absolutely lovely

another thing you could ask your gp for is O2. Most people with cluster headaches have great success with that, you need to have it with a high flow regulator as you need to take it at 7-12 lpm.

ouch uk have a support board, and there is also a helpline. you can phone them and someone from the helpline will phone you back, they are all sufferers too

i hope you get your appt to see Prof Goadsby soon, he is the expert on Cluster Headaches and other similar types!!

[mrs_mac]

hi Anne and speedsneed, just thought i would check in to see how you guys are doing??

mrs mac xxx

[majorpain]

First timer here, just wanted to let Sandra know that I have recently been put on Amitrypiline.  Good news is that it has helped my sleeping habits, I actually sleep all night and I don't wake up with headaches or migraines as I used to.  The bad news is, I still get the migraines and the daily headaches.  I do recommend the medicine it has lessened my time spent in pain but I would not get my hopes up to high.  Keep a glass of water on your nightstand, I have terrible dry mouth from the med, and it will also dry your sinuses and seems to also dry out  my skin.  I have been reading all these different articles and forums and posts.  I'm at the point now that I honestly believe I will never be cured.  I have always tried to stay away from anything too adictive (ie. pain medication) but right now all that helps is a heavy dose of Loratabs.  The problem with that is when they wear off, migraine is back.  I had one doctor give me a Stadol nose spray, because it is less likely to allow the migraine to came back, but there again it is addictive and I can't imaigine that anything you spray in your nose aon a regular basis could be good for you.  If anyone has any suggestions for me I'd love to hear it.  I don't want to depend on medication the rest of my life but I do realize that I might have to deal with the meds anyway.

[Lizzydrip]

Hi major pain, sorry that you are suffering so much. I agree the amitriptyline is good for a decent nights sleep but the dry mouth can make me more thirsty than usual - I wondered what was happening to my skin as it is now more dry then usual! I have the Imigran (Imitrex) injections to abort the attacks which I administer myself - I don't know what I would do without them!! Yes sometimes the pain etc does come back after the injection has worn off but I am very pleased to say that since I have been on the Amitriptyline the injections work every time! Properly!!!! - just need to get the frequency down now!!!

Mrs Mac, thanks for all your info, I did email you but seems like you did not get the email. Good News I spoke to National Hospital yesterday and they seem to think that I've only got around 4 months to wait now!! I do seem to have a lot of the symptoms for Cluster Headache but not all of them thanks again Ann.

[mrs_mac]

hi ann, check your e mails!!!

mrs mac xxx

[SPEEDSNEED]

HI GUYS AGAIN!

[Lizzydrip]

Hi Richard, I am sorry that you are in so much pain still. How long did you try the Amitriptyline and other drugs for? I am wondering if it is a facial nerve pain, what has the Facial Pain specialist said, has he discharged you?

Whatever it is, it is causing some real panic and stress in you quite understandably, it seems to me that there might be a place to take the valium on short term basis only. I have got to the point of when I eventually see this Neurologist who is a Headache Specialist if he suggests anything from another drug to Psychotherapy I am willing to try whatever!!!! After 30plus years of suffering with this I think anything is worth a go.

What painkillers do you take? When I was taking Co-codamol I didn't realise till after some years of taking it that the co-codamol was causing more headaches than it was ever relieving!! I don't get the chronic daily headache that I once did now I have stopped taking co-codamol (paracetamol and codeine - codeine is a narcotic and addictive).

Have you any family support? Are you able to work? What happened when the pain first started 2 years ago, there might be a clue in the events around that time on how to move forward. Hang in there Richard, sadly there is no quick fix to this but we are all rooting for you. I will pray for you take care Ann

[Lizzydrip]

Hi Richard, I am sorry that you are in so much pain still. How long did you try the Amitriptyline and other drugs for? I am wondering if it is a facial nerve pain, what has the Facial Pain specialist said, has he discharged you?

Whatever it is, it is causing some real panic and stress in you quite understandably, it seems to me that there might be a place to take the valium on short term basis only. I have got to the point of when I eventually see this Neurologist who is a Headache Specialist if he suggests anything from another drug to Psychotherapy I am willing to try whatever!!!! After 30plus years of suffering with this I think anything is worth a go.

What painkillers do you take? When I was taking Co-codamol I didn't realise till after some years of taking it that the co-codamol was causing more headaches than it was ever relieving!! I don't get the chronic daily headache that I once did now I have stopped taking co-codamol (paracetamol and codeine - codeine is a narcotic and addictive).

Have you any family support? Are you able to work? What happened when the pain first started 2 years ago, there might be a clue in the events around that time on how to move forward. Hang in there Richard, sadly there is no quick fix to this but we are all rooting for you. I will pray for you take care Ann

[SPEEDSNEED]

I HAVE TAKEN ALL KINDS OF PAIN KILLERS, IVE STOPPED TAKING MANY NOW AND JUST BARE THE PAIN, ITS CRAZY BUT THE NEUROLOGISTS TOLD ME PAINKILLERS ONLY MADE IT WORSE, AND MY PAIN IS CONSTANT, UNTIL I GET A DAY OF RELIEF I DONT SEE THE POINT IN A FEW HOURS RELIEF.

[mrs_mac]

hi richard, have you managed to check out those links i gave you?

also maybe you could ask your dr to refer you to the Institute of Neurology in Queens Square ask him to refer you to Professor Peter Goadsby, he has done a lot of research into Headaches!!

i really hope you get sorted soon honey, i really feel for you suffering all the time!!!

tc

sandra xxx

[SPEEDSNEED]

hi everyone, thank you so much for your support. sadly i have still 2 years on has NO PROGRES... and i really am terrified what the future holds for me now... i am so depressed and eaten by this agony that i am loosing sight more with each day...

I eventually became a patient of PROF GOADSBY and have been now for almost under 2 years, with no improvement yet....

part of this is because he can only offer me private appointments at UCL London once every 3-4 months which is seriously no help at all...

my condition has worsened, my symptoms are worsening, currently PROF GOADSBY is treating me with NUELIN SR for his idea that my pain is all linked to a LOW CSF pressure issue, although after now 4 months i am now experiencing cluster headaches on top of my current pains and the Nuelin is making my condition CLEARLY MUCH WORSE.

i cant believe there is no real help anywhere, my family are falling apart trying to help me, i am constantly on the internet, i have somehow just finished a BA degree in unbearable pain for the whole 4 year duration, and suprisingly i have actually done quite well...

i am about to post a hand written history overview of my entire condition as i can recall it, in as much detail as possible, i really prey someone reads it and helps me find the ANSWER. THERE HAS TO BE AN ANSWER, THERE HAS TO.. this form of life is not one worth living, i am currently 21 years old, and i am watching life fly by, i am extremely alone, depressed and isolated.

Anyone who feels they can offer me any help please please do contact me



Richard Carr


location: London, UK


Richard, I have edited your post yet again to remove your email addy, if you want peeps to contact you please ensure your email addy is in your profile - this is for your security!!! - Ann

Post Edited By Moderator (Annuk) : 6/20/2008 9:50:32 AM (GMT-6)

[SPEEDSNEED]

Note: I hope this provides a short, direct and valuable overview of my condition, diagnoses and treatments as well as my own opinions to the cause or underlying problem…

Start)

Currently aged then around 17 years old in 2003, overall of quite normal health, Glalandular fever, mild Anxiety and very hyperactive but had NO history of headaches, or any cranium region pain or anything of such significance.

Suffering from diagnosed generalised anxiety, mild panic attacks and general hormonal disposition of a teenager. Was treated for GAD with Veneforlaxine / Effexor XL 150mg per day for the duration of one year. Also at this point I had history of regular heavy Cannabis smoking as well as Tobacco.

Headaches became noticeable while studying at college, found they were random, stress/concentration induced, and found instant relief upon smoking cannabis or simply relaxing at home in evenings. Headaches gradually became more frequent over time, lasting slightly longer periods.
Continued smoking of cannabis even with mild tension type headaches present, which presented no significantly troubling pain at time or interference.

In between this time of 2003-2004, I strongly note I also went on a family holiday to Turkey, was very happy until we went scuba diving and experienced minor but significant pressure pain upon trying to equalise for the first time under water, also shortly after contracted a fever and cold affecting my sinuses. On flight back from Turkey in mid air I was very suddenly hit by extremely severe and extremely violent sinus like pain, which was sharp intense and throbbing, caused a drama on plane as crew tried to place ice directly on my face and head. Pain did not relieve until we landed, and I was left with a moderate lingering pain in my sinus locations and bilaterally on my temples, which lasted a gruelling week or two but subsided.

Soon after or during this experience back at college I began to experience more frequent and severe daily tension type headaches, which did disturb my mood, hunger and especially any ability to focus or concentrate. Soon after I experienced my first ever severe, Migraine type attack, which I am quite sure was triggered or aggravated by the smoking of cannabis. This severe and disabling Migraine left me unable to leave the home for almost 2 weeks exactly 13 days, and I was left with strong light and noise sensitivity which continued on. I later experienced one final severe Migraine attack of same nature.

Possibly a month after this 1st Migraine attack I then experienced one further attack, again triggered or aggravated by the onset of smoking Cannabis. This attack was more severe and crippling and again lasted almost 14 days exact. After this attack I immediately visited my first ever Neurologist who immediately put me onto the following drug treatments.

- Sumitriptans
- Amitritptyline with Sodium Valporate
- Dothiepin with Epillim-Chrono

I then went back onto Amitritptyline, which was continued with Topiramate, after other drugs had no effect. In result all had no significant effect on any of my pain symptoms.

My symptoms at this stage were agonising daily, constant headaches. Pain location was Bilateral, very strong on Temporal location and spread very painfully over Sinus locations of face across eyebrows, across forehead, around ears, and around my cheeks, also had pain over entire Scalp and stiff, sore Neck muscles.

From this point onwards for 2 long gruelling and extremely painful years, my mother and I went from one neurologist to the next seeking an answer, or a theory for the cause, and I saw myself treated with dozens of different drugs, and more confusingly going away with new and different new diagnoses.

Many of the diagnoses ranged from:

- Chronic Daily Headache
- Tension Type Headache
- Nerve Damage Sensitisation
- Idiopathic Persistent Facial Pain
- Chronic Sinusitis Pain
- New Persistent Daily Headache
- TMJ Disorder
- Low C.S.F Headache
- Transformed Migraine

Treatments ranged from: more Amitriptyline, Increased Topiramate, Small doses of Clonazeapam, 5-day trial of intensive Prednisone, Propananol, Antibiotics, Pregabalin, Valium and currently Nuelin SR.

Also for at least 2 years went through just a sample of the following:

CBT Therapy, Pain Management, Visualisation
Hypnotherapy, Chraneopathic Therapy, Chiropractic Treatment
Accupuncture, Spiritual and Faith Healing, Homeopathic Treatment
Chinese Herbal Treatment, Postural Therap
During this slow and gruelling process, there was not one drug I was tried on which significantly eased or help me deal with the mental and physical pain I was experiencing violently on a constant and daily basis 365 days a year, and to make matters of worse I left endless clinics all over London with new notions and promises of relief and an answer to the ongoing problem.

Amitriptyline over time provided and still does a 10-20% help with coping with the mental anguish and depression but does not enable to me live any form or type of normal life. Valium also provides very short term relief to my pain by suppressing my central nervous system, alike as excess Alcohol also does and both have similar effects on me.

After approximately suffering for around 2 years solidly with Headache Pain, I gradually developed in the process of trying all kinds of products a very strong Tingling, Prickling, Itching, Burning sensation over my Scalp. This soon spread to my face, causing a strong and chronic Flushing issue where I had very dark rashes appear. This worsened as my condition has, and spread an excruciating constant Burning sensation of the same nature over my entire Scalp, effecting my hair, making my scalp sensitive to every irritant and my skin and hair in general unbearable and constantly aggravated. We have tried so many solutions for these symptoms alone the list doesn’t stop.

The condition inevitably has worsened over time, there have been small periods of relief, but nothing has significantly improved. I am more worried for the constant and developing pains emitting from my eyes, the shooting pains behind my eyes and more importantly my general balance and ability to safely drive or do any daily tasks as normal people would.


Below is a list of a few of the Treatments I have undertaken either via the guidance of Neurologists or Specialists:

- 5 x Occipital Nerve Block Injections
- 1 x Set of Super Orbital Nerve Block Injections
- 5 Day Intravenous D.H.E treatment
- 3 x Caffeine Infusions
- 2 x Botoxulin Injection Treatments
- Lumbar Puncture
- Wisdom teeth removal
- (Future possibility) Stimulator Device implant


Current Symptoms / Last Final Suggestions

Symptoms:

- Constant heavy dull throbbing entire head
- Heavy agonising pressure over entire head
- Severe constant Allodynia pain of entire scalp, hair and face
- Throbbing, intense pains behind eyes and across sinuses
- Constant dehydration, dry skin, scalp hair, eyes, mouth
- Balance and Postural movements worsen pain, especially bending over
- Tight muscles all over face, scalp and neck

I am literally going out of my mind, it feels like I am falling into deeper and deeper depression, and slowly watching my problem continue violently and cripple my life as well as my families. I am noticeably changing as a person, and loosing my entire self-belief and sense of morals as the days pass. I really see this being the last thing I write in hope and aid of my illness…

I more significantly see NO progress, and I feel if somebody gave me the time and required observation I strongly believe the underlying problem or cause, will and can, be discovered and treated. I am a large 6’4 Male of 21 years of age, and I know only to well how I felt prior to this long and devastating state of hell and would do absolutely anything possible to return to it. I have already suffered too much…

Note:

The following is a short summary of my own constant study, investigation and ongoing exploration of what potentially may be either an underlying cause or potentially missed part of the problem…

1)

Firstly I never feel my Neck region was investigated to a respectable level, I only ever received one standard X-ray, which actually recorded issues of chronic muscle spasms activity as well as neck structure abnormalities. I think this in itself warrants an MRI or x-ray of some kind for my Neck to rule finally out.

2)

My severe and crippling constant and severe Allodynia pain on my Scalp and face. This is obviously an extreme general sensitivity developed from my cranial nerves but there are a few issues never, which have been addressed or investigated. My skin itself over the last 3 years I have noticed a huge decrease in general Sebum Oil Production, my skin permanently dry and chapped and permanently very dry mouth, and red sore eyes. This issue also applies to my Face, Hair and Scalp, which I remember only to well use to be regularly oily, and a general issue, which actually was a teenage problem I self treated with regular shampooing, cleansing and over the counter products.

I would like to think that this warrants consideration to a chronic dehydration issue, possibly caused by the ongoing treatment of drugs, which strongly cause general bodily dehydration issues. I also would hope a small and simple Scalp sample could be analysed for hair follicle or lipid damage, which could point me in some direction of pain reduction.


3)

I was clearly told and shown by a Dental Specialist on Harley Street that I had an underlying issue which showed itself in a very old MRI scan of my TMJ discs, which he promised with surgery and treatment would result in all my pain and neuropathic symptoms permanent relief. As this notion he passed came at the cost of £20 - 30,000 pounds though we sadly were unable to explore this route any further.

4)

I continue to read more and more about Acute & Chronic Sinus Infection conditions which can cause very similar symptoms, go unidentified and be more significantly worsened by physical exertion, Bending over! Also heat, coughing and can be caused/aggravated by Pressure Disturbances such as air flight discomfort. I hope this possibly provides another route to rule out.

5)

This also brings me to the headaches and their potential significance to Blood Pressure, another area never explored. I understand there are conditions of Hypertension and raised Blood Pressure, which can also cause very similar in character symptoms and severe throbbing headache upon waking, and aggravated by the simplest of physical exertions alike mine.

6)

This is an unusual condition called Pheochromocytoma, which is a tumor of the adrenal gland. The reason, which brings me to this condition, is its similarity with not only current symptoms but my early symptoms of anxiety prior to the headaches. I have studied it can be easily examined by a 24 hour urinary Catacholamines and Metanephrines as well as a test for Serum Catacholamines along with a simple x-ray of adrenal glands.

7)

My last hope is to simply explore a last selection of Drugs for potential treatment or Diagnosis. One to begin with would be Methysergide, Flunarazine, Gabapentin, Cymbalta instead of amitriptyline and Intravenous with Ketorolac for my scalp pains, as well as any others suggested.

Prior Relevant Incidents / Illnesses as a Child:

Severe Whiplash Injury
Minor car crashes
Glandular Fever
Testicular Vein Knot
Generalised Anxiety
Chronic Fatigue Syndrome

[SPEEDSNEED]

Hi!!! to everyone who has left messages on this forum!... i have continued struggling along and for some reason i wasn't sent any notice that people had written on here... i am really annoyed i didn't know people had responded. but better late than never

Ok, to get straight to all the questions which i have read.

i am still currently suffering 24 hours a day, this constant headache has really stolen all of my life now for 5 good years. i am currently under one of the best Headache Neurologists Prof P.J Goadsby who i see privately at Queens Square in London, UK.

But in saying that i am only able to see him once every 3-4 months which is proving almost unbearable as it is extremely dificult for any doctor to successfully concentrate and treat a young patient with a complex condition such as constant severe headaches seeing them 3 times a year...

my mother and my family have been torn apart by my condition, and i am now considering very very soon maybe in the next few weeks going to America to the famous MHNI Michigan Headache Institute Hospital.

* IF ANYONE HAS INFORMATION OR EXPERIENCES IN REGARDS TO THE 'MICHIGAN HEAD PAIN & NEUROLOGICAL INSTITUTE' PLEASE DO GET IN TOUCH URGENTLY!! I WOULD SOOOOO APPRECIATE IT!! *

Apart from being under Prof Goasdby for almost 2 years with not even a 1% improvement so far in my condition, i have also been through probably one of the most diverse selection of Neurologists working all around London with zero breakthrough's and no improvement, just more and more money going down the drain...

for all people on this entire forum i think all headache sufferers need to help each other and something needs to be set up where all similar individuals can seriously discuss, chat or even get in direct contact with fellow sufferers... i think Healingwell.com is a great site but for those who literally like me can not go on anymore and are desperate and passionate about getting better for good we really need to all in some way be in much more contact or form some form of online chat group...

from my experience of approximately around 15 of the best Neurologists practicing in Greater London in the UK, one thing which is clear is they never have enough time to really get to the bottom of the problem... everything runs for the timed hour or more and then its out the door with a new prescription or glimmer of pretense hope as you walk away. BUT NO IMPROVEMENT.

NOTE: My condition still remains the same although it has worsened in the last 6 months.

- Constant Pressure like sensation over entire scalp
- Constant Pain, ache in the face, the temples, above the eyes, behind the eyes
- Often blocked, stuffy nose, lots of phlegm in sinuses
- Dizziness, confusion, generally unable to focus or concentrate
- Often sharp intense throbbing pains, around eyes, over temples and scalp
- Constant dry scalp, dry itchy hair, Alodynia burning pain of hair
- Dull but severe Pain around eyes, like severe constant eye strain all day
- Depression obviously & increased anxiety


My best wishes go out to anyone who has written on this forum to me, and my appologies for not writing back, please do write anything you want & i appreciate more than you can imagine people having an interest in my case.

Best Regards

Richard X ;-)




P.S Please feel free to email me or directly get in touch with me through my email address which is

SPEEDSNEED@AOL.COM