CHRONIC HEADACHE / MIGRAINE / NDPH / CLUSTER HEADACHE - WE ALL NEED TO HELP EACH OTHER!

Overview of Entire Headache / Pain History

Written by myself the Sufferer... NOT THE DOCTOR!

Patient: Richard

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

Prior Relevant Incidents / Illnesses as a Child:

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

Post Edited (SPEEDSNEED) : 10/18/2012 2:31:32 PM (GMT-6)

Hi Richard,

I am sorry to hear that you are suffering so much. You are right about Professor Goadsby being the best, there is nothing he does not know about headache. I would encourage you to hang in there as although this must seem endless to you, Prof Goadsby will not stop until he has found the best way forward for you, the only thing is that it could take some time!

I started with my headache problem in my teens and was not taken seriously until I was in my thirties, by which time it had progressed considerably. I finally saw a Neurologist in my forties but given the run around again until last year Professor Goadsby diagnosed my condition at the age of 53!!! I would add that it took him around 18 months to get to the bottom of it! I was referred to Prof Goadsby finally at age 52!

Hang in there and take care

Ann

Hey Richard,

I think I have the exact same condition as you. It started as a sinus infection when I was around 15 and now I am almost 20 years old. I have had a constant headache 24 hours a day since it started with only one day when I woke up and it was gone. It came back again later that day. I have been to over 5 doctors and the best neurologist in New Jersey, US. I've tried acupuncture, physical therapy, and plenty of headache medications. I've been on pain killers for over 4 years now. I still can't find a cure. I have constant pain in my forehead, neck, cheeks and eyes. I've also had CT scans and an MRI which the doctors did not see any sinus issue there. but the headache continues. This has also caused me to become depressed when the pain is at it's worst. I can't stand the pain anymore. If you still check this forum, please contact me.

edited to remove email...please add your email under your "control panel" and we can click the envelope under your screen name to access that safely. Thanks!

Post Edited By Moderator (tysmyboo) : 5/30/2009 2:19:26 AM (GMT-6)

Dear MJonathon,

Mate your lucky i was literally just checking back over the site and saw what you had wrote. This place for people like us is terrible to keep in touch, our age we're both in our 20's its just insane that we live like this. Please contact me via email.

No gaps, just did that as sometimes they remove email addresses. If we can make contact it could be extremely useful and i am ready to make contact so email me if and best wishes!

Richard from London!...

P.S. Still suffering on a daily basis with this constant nightmare of headaches!...




I have edited your post to remove your email addy for your safety. Please read the forum rules about this??? If you adjust your profile people can click on the envelope under your name and email you that way - much safer for you!!!! - Ann

Post Edited By Moderator (Annuk) : 6/12/2009 10:30:11 AM (GMT-6)

Hi there,

I have just joined.  Your story is very interesting.  I have also seen Goadsby and wasn;t too impressed with his social skills.  He was very unsympathetic and I also tried the DHE treatment.  Having gone through years (15yrs) of headache that has progressively become worse I am now going to Cleveland Clinic in Ohio for a 3 week headache programme.  I am currently on pregabalin to help with the anxiety and also neuropathic pain on scalp and also take daily solpadiene and also venlafaxine.  How are you doing now?

Moderator--please edit his first post of private information (for his protection)

Speed-- Hi. It sounds like you need a neurologist. Also you might want to find your "triggers." Finding your triggers can help you prevent your migraines.

To find triggers-keep a ledger of what you eat, drink, fragences, lotions, etc Look for common factors and eliminate one by one at a couple weeks at a time. It will take awhile, but well worth it.

For example, caffine, pollen, not enough sleep, thich long hair, chocolate, bananas, and some medications trigger a migraine on me.

okay ..i want to make it short .
since I'am 12 i had this 24 hours migraine now i'am 23 years old .
i was months in the hospital , they check all find nothing and say that is impossible that the pain is wandering all over my head and face parts
or even during all the day .......all medicaments they give me during
the years . don't have any effects or make my pain that whorse that
i can take it . there were many days and weeks i can't take nothing ,
that i can't stand up for a week . or the tears running for hours of the pain that is like hell......that i must regret to go out , that i live for years between
should i give up my life and end this or oversleep my 'life'.....
it was not only my head , my whole body hurts (engravings ,cramps a long list ).
every year all gets heavier .....the last years i can't move my body normally because of the pain . sport wasn't possible anymore
i don't wanted anti-depressiants until the last years , because my body was the problem and that is the only reason for suicide thougths or giving up anything . i read that the reason could be stress or a child trauma .i was sure where it came from ....
i moved from germany to the us and was really happy .
after a few months IT STOPS !!! i only had headache some days for not more than an hour or on rainy days . i was happy by things i couldn't
before and enjoyed the time .....there 6 months without the pain ......
now i have them for 3 weeks again . for no reason ......
there is nothing ....i have all i need . the suicide thougths starting a few days after the pain again . i can't be happy ... i'm so tired .

i'am so terribly tired . it ruined my new life ! with the pain i feel hurt and weak again and don't want to be with anyone ......
i'am so frustrated .......


@hollywouda thank you for your entry . i will try them .
it's the same for me ....

Dear Everyone,

It's me again... it has been a long time, and still i'm sad to say it but there is not much improvement, and i'm certainly still far off being cured. I really do apologise to all that have replied to the post, or the many that have tried to get in personal contact with me vie email. It has been a very very busy, manic and tough past couple of years.

What i can say is a few things have begun to help in the last few months and still currently are, i am also moving closer under my current neurologist in central london to having a bilateral electrode stimulator if all else fails fitted later this year!

Trust me though guys, there is always hope! I will not give up and when i do crack this i will be the first to let yourselves and the hundreds, and thousands of other sufferers know the cure!

THAT IS MY PROMISE.

In the meantime, if any of you want to know what has been working and is helping me just email me directly at [email protected] and even better pick up a telephone and give me a call...

And to all those female sufferers also, don't be afraid just get in touch.

This is my quote to you all...

'Life's trials and tribulations can do one of two things to you... they can either go on to defeat you, or they can go on to become what defines you... There is always choice'

My sincerest wishes to all of you,

Richard x

Post Edited (SPEEDSNEED) : 6/5/2011 7:31:51 AM (GMT-6)

Hi Steve... mate it's touching to hear from you! and even more so for you to have finally found me here on an internet forum lol

The last time i was talking to you was from the other side of the hospital ward in the lovely charing cross hospital. Time really does fly by... and i won't be ignorant enough to say i hope your well because from your message i can tell you and me both are still suffering with no end it sight at the moment.

It's great to hear you got your appointment at Queens Square eventually that is lol, and it's even more so interesting that you've been seen there by the one Neurologist i haven't seen Dr Matharu.

Do please keep me updated on the 'skull probe' he has planned as LOW CSF Headache is what Prof Goadsby himself originally had diagnosed me with years ago before falling back into the loop hole of 'NEW DAILY PERSISTENT HEADACHE'

The interesting thing in particular with them looking in detail at your CSF Levels is the common fact that lying down does give you, myself and quite a few others sufferers all some level of relief, and if Prof Goadsby's theory was correct he told me that sometimes with something as simple as a Leak in your CSF it is very rare and very hard for modern day testing in particular what i had done which was a contrast-dye injected series of nuclear imaging testing to actually find the leaks even if they exist. Mine came back all negative, however Prof Goadsby was convinced LOW CSF was the cause of my condition?!

Not sure if i told you but i ended up having a few seconds of fame recently on the daybreak morning tv show on ITV recently with Dr Weatherall. I was only on for a few seconds as the whole thing was pretty last minute, and it showed me having an Occipital Nerve Block and weatherall talking about headaches and migraines etc you can still view it online at ITV's website

P.S You should still have all my details from the hospital, phone number & address etc so please do feel free to drop me a line anytime if u want to talk or plan our attack on parliament! lol And to please let me know as soon as you get any further in regards to the Skull Probe, i would be really interested to know how that goes.

Send my wishes to your wife and kids and wishing you some relief mate.

keep on fighting!
Richard

I had the same symptoms you all mentioned. I've recently been experimenting with diet and sleep. What has has worked so far is avoiding corn starch (and corn for that matter, which is very hard to do) and getting 8 hours of sleep. I used to eat a lot of cereal but dropped the milk along with the starch filled cereals. I use cream in my coffee still but don't drink milk after 3pm. I get about 1 headache a month now normally because I don't follow my own rules or i'm experimenting with a new ingredient.

It would be great to see if this also helps any of you. I'm against treating symptoms, which I feel is the focus of the medical community. I investigate root cause systematically as an engineer and I beleive it's something sourced within the food supply chain. I also found some teas trigger headaches too, but they're so severe I don't want to experiment with them again. If you're a tea drinker try changing up the type. Some don't both me at all. ..and remember 8 hours of sleep. It may take a week of doing this to feel the effects.

Good luck to you all. Chime in and let us know if it's successful for you.

Richard what exactly do you think helped your condition?

Thank you in advance

hi everyone,

first sorry for my bad english,im Drilo from Albania now im 20years old,my story with headache began 4 yrs ago in a really hot summer day i went to a swiming pool and the water was ice cold as i first jumped in to the water i felt something like an explosion in my head i dont know the exact wolrd to say,and i said thats nothing so i came back home in then after 3-4 hrs started the headache i had that same pain for weeks i went to doctors they said thats nothing that u should worry about they said it must be tiredness,strees nothing more,so i took some painkillers but nothing,after a week ive started to spit blood that was the moment i freaked out, i did not tell anyone for that in that moment i was afraid i did;t know what it is,so two days when i woke up i saw my self in hospital,and the doctors said it was just a coldnees, so i took tons of pills and and stuff so i became better with less headache but after two months my health just got worse ive started to spit blood again and pain again i was to a specialist and done all the blood test and CT and every nesseceary test and it ended with a LUNG Disease/that came from coldnees,so docktors here are not very good so i had to go in American Hospital in turkey the only place that we have to go without visa,there ive done the operation it ended succesfully they cuted half of my right lung and yes you would ask and headache has it stoped my answer is no and thats why,my operation there was very expensive and my family could't cover it,i had the pain and when they ask me do u have any pain i say them no im good couse i know my family cant cover more treatments cuz we live in a poor country low budget low payments like one person here gets 2000$ per year and my treatment in american hospital cost 70.000$... so i think thats it i still got that pain i think every day its geting worse ive tried every painkiller but nothing,i hope You or someone can help me.

any advice ?

Hi,
I would like to share about my friend's daughter's case of persistent headache.
She's only 11 years old, got infected by mycoplasma 3 months ago, suffering from headaches & weakness in body. Recovered from it & met a small accident in which her face was slammed with a broken nose by an opening door. She recovered well & 3 weeks ago started having immense headache. All medicine was been tested & nothing worked. Had therapies with an osteopath for suspicion of compression of cervical nerves, indeed some misalignment was detacted & was treated. Yet headache still persist.
Did a blood test report & was being analysed by a professor specialised in cells.
Reports shows she has too high cholesterol. VLDL is way too high above risk factor which causes blockage of arteries. Prevents blood & oxygen from travelling to head.
also signs of syphilis infection.
Triglyceride also exceeded the high risk range deposited in walls of blood vessels may cause hardening of blood vessels.
I do think other than medicine itself, perhaps is good to have a blood test report done or see a cardiologist to check if blood vessels has not been blocking oxygen from flowing into the head that causes headache.
Just my 2 cents worth of sharing.