Saturday, 14 July 2007

About my headache

Well, were to start. I am a 23 year old male from Plymouth in the United Kingdom. I have a BSc (Honours) degree in Computer Systems and Networks from the University of Plymouth. On the 2nd September 2005 my life changed, although hopefully not forever! After a morning at work I returned home to enjoy my afternoon off.

During the morning I had spent a long period looking up and also took a jolt whilst holding a rope. I had also had a very sore throat for a few days before. When I got home I may have got overly annoyed that the football game I had been looking forward to all week was not on TV. In a minute of madness I punched into the sofa cushion to release my frustration. It was now about 2pm and I was still feeling normal. I jumped in the shower and then sat down with my girlfriend to watch TV and chill. OHHH how wrong I was.

At about 2.30pm I started to get an itchy left ear and a very sharp pain at the top of my left temple. At the start this pain was just in a small area of my temple, but was unlike anything I had felt before. Within an hour this pain had spread to cover the whole of my left temple area with the worst of the pain being smack on my left temple. Now normally by my own admission I am a bit of a night hawk and often, as my old man says, am burning the candle at both ends but on this day I was in bed by 7pm. I took two pain tablets and thought that it would be gone in the morning. Again how wrong I was! At this stage I want to mention that for the last 6 months to a year I had been having morning diarrhea and loose stools although was not causing me any physical problems as once I was empty I was fine for the rest of the day.

Woke up the next day, 3rd September 2005, still with the headache and worse it was still at the intensity that it had been the day before. The pain was still on the left temple and remained there for a good three months or so. During this time I felt that there were two distinct problems. The extremely bad pain that started it all seemed to start to ease on occasion, although I was still not headache free. I seemed to develop a daily continuous moderate headache that was present 24/7 although its intensity would vary throughout the day. This headache could be on both sides of my head and at the same time too. The main difference was that this headache rarely reduced me to tears unlike the bad ones that do. Between September and January I tried a whole host of meds and alternative treatments including pain meds (which had very little affect), a range of migraine abortive drugs (nearly all the triptans), indomethacine (NSAID) and sodium valproate. I also used amitriptyline although probably not for long enough to see any benefit. None of these worked. The first small breakthrough came when my neurologist prescribed me a seven day course of prednisolone (which is a corticosteroid). This seemed to reduce the intensity and frequency of the really bad headache and made a small reduction to the daily headache. Also with the headache I have a lot of left sided neck pain as well as pain and discomfort in left shoulder and heaviness in left arm. I was also told I have IBS (irritable bowel syndrome) and that is to blame for my daily loose stools/diarrhea.

The year of 2006 was a long one with not a lot of progress being made. My GP`s (Local doctors) all told me my neurologist was the man who had to set the treatments and so began a very long game of pass the patient. However some good did come from the year, I had an MRI of head and neck, both had no significant findings (whatever that actually means .... I`m 23 there should be no findings and I should be healthy!). Also during this year I had several blood tests done and everything is OK there too apart from a raised number of eosinophil (which now in 2007 is at its highest yet, over three times the normal range) although my doctors don’t seem bothered in the slightest! At the end of 2006 I had a kidney stone, my first and hopefully last. I spent over a week in hospital and still the headaches remained as I went into the New Year, praying for a lucky 2007.

The New Year brought with it a referral from my doctor to a pain clinic in a bid to help me get the pain under control. Over the course of a couple of months I had three nerve block injections into the main nerves in the back of my head. This actually did help for a short while although at no stage did the headache go, the blocks seemed to ease the pain in the back of my head and top of my neck. After three treatments I was not able to have anymore for a while as they contain steroid. I was then passed again but this time to a physiotherapist who gave me a host of exercises and stretches to do. These seemed to help a bit with the neck and shoulder pain but did not have any significant long lasting effect on my headache. Next was a different approach. My physiotherapist contacted a colleague of his who was performing trails for a PHD in dry needling of trigger points. On my first examination with this lady, she identified several trigger points in the left side of my trapezius muscle. Treatment of these points gave me some neck and shoulder pain free days and seemed to give me more good days than bad with my headaches! Promising, I hear you saying. It was until last week she told me that because I was not headache free then there was little point carrying on. But what about the relief I’ve been getting? So it hasn’t cured the problem but as I’m sure other suffers will agree, it’s nice to have a treatment that helps at all rather than NOTHING. I hope to convince my physiotherapist who has done some acupuncture to have a go at this treatment and use me as his learning platform! Fingers crossed. And that just about brings us up to the present day. On Friday 20th July 2007 I have a lumber puncture and on the 24th July 2007 I am have a dihydroergotamine (DHE) infusion over four days. Both are pretty scary and to say I’m nervous is an understatement!

The headaches themselves remained daily (usual on sides of head, occasionally on back of head) with a decrease in the sever flare ups but still no clear pain free periods. Most days I have a constant mild to moderate ache in my head which varies in intensity throughout the day with flare ups of really bad pain once or twice a week that still makes me good for nothing. The Bad headaches tend to be on one side although they sometimes spread to whole head and hurts more if I move my head. The pain is sharp and my head almost feels like it’s swollen. I hate these ones! My daily headache feels like a tension headache and I often feel tension or weird sensations in the Left side of my head, neck and shoulder. I can have a good day with my headache but be in a lot of pain in my shoulder (makes a change from the head but still hurts!) The shoulder and neck pain seem to have no reason for being there and no amount of chiropractic or osteopathic care has helped and I now suffer from this on at least four out of seven days a week. Some days I have no pain in shoulder or neck and other days it bothers me as much as the headache. I often feel tightness in the top of my back on awakening as well as in top of shoulder and side of neck. The diagnosis from my neurologist is transformed migraine although he is not 100% positive. Hopefully by the end of this month I should have some answers!! I hope!!

I`ve probably forgotten and missed out bits and pieces but this gives you a rough idea of my situation. Any questions, help or advice would be gratefully received and hope this helps others who are unsure of their condition. All I want is no more headache!!

James Blackmore

12 comments:

Malcolm said...

Interesting to hear your story as I keep searching the net to see if i am the only person in the world to have this condition. Tension headaches.

Your story is very similar to mine. All the symptons etc are the same and I have had the headaches constantly since one morning back in December 2002. I am 29 now went to university etc and regard myself as normal apart from the headaches whicvh have taken over my life and changed my whole personaility.

The one thing i would be interested to know is how your headaches effect your memory and concentration? My memory is now terible and concentration is bad as well. Writing this comment for example is really difficult and i struggle to find words etc. Let me know if you have these problems as the all the other issues that you mention are things that I can relate to.

Malcolm

Elana said...

Wow, your story sounds so similar to mine, I was kind of shocked to find it.
Do you have Yahoo IM or AOL IM? I would love to chat with you further. My yahoo ID is socialdkitty81 or you can email me at socialdkitty81@yahoo.com
Here is my story:
In February 2007 I woke up with the worst headache imagineable. It was shooting pains into my left temple area, seeming to come from the left side of my neck.
My left neck gets stiff when I turn it to the side and while the sharp shooting pains have got better, I still have a dull achey pain going from my left neck into my left temple. I also have strange odd tension and pressure sensations in my back of head/neck and the headache is there every day, although it comes and goes throughout the day and varies in intensity.
Does your headache get worse with bending over, sneezing, coughing or straining? Mine does..
Its such a mystery. I have been to several neurologists and none have been able to help me.

Jac The Rolfer said...

Hi James
Your dad spoke to a colleague of mine in Bristol about you, and he suggested I contact you... I've read your story with interest and would like to chat over some observations if you want to - the bad news is I'm just about to go abroad to work for 2 weeks with not much email access but feel free to contact me - jactherolfer@fsmail.net - I work in Exeter and Plymouth area's and sorted out a young policeman with very similar symptoms. Meanwhile, good luck !

Anonymous said...

Hi James, I can really sympathise with you as I have suffered simular symptoms for 18 months now and I'm at the end of my teather. Like you I've tried various drugs and therapies all to no avail.
GP's are useless the three I've seen all said something different, one even said I was imagining it all, (I only wish I was). After that I paid to see a neurologist and he thinks I have status migrainosis, I just think they like to give us a fancy name to shut us up.
I am a holistic therapist and I've tried all sorts, but the best thing I have found are accupressure points that I perform myself on my hands and feet, these can be found on chinese accupressure websites, hope they may help you too.
Please let me know if you find anything to releive your symptoms as I would be willing to try anything.
Best wishes from Hayley

Anonymous said...

I periodically read these online blogs and posts to see if Neuromuscular Dentistry is ever mentioned and to my disappointmnet it is not. It is a successful treatment, available world wide, by Dentists who are trained in this 40 year old discipline. It has been made even more precise with the evolution of computers for precise bite measurements. Google-myotoronics.com, the company that makes our NM equipment, that is FDA approved. There are numerous research articles available online there. I have no financial interest in the company other than purchasing equipment and supplies from them. Then look up to find a Neuromuscular Dentist in your area. We are WORLDWIDE- US, Canada, United Kingdom, Australia, Singapore, Europe. Also, look up ICCMO an organization that is devoted to NM dentistry. As a an example while reading Malcolm's post that is directly to my left as I write these comments, the same things that contribute to Headache pain also contribute to OSA (obstructive Sleep Apnea) which can contibute to memory loss...PLEASE SEE A Neuormuscular Dentist! Dr. Donna Blair Fresno, California

Anonymous said...

I just read your story and I can't believe I am really not alone. I thought something was really wrong with me and they just couldn't figure it out and just kept on pumping me with med's. I have been dealing with Migraines since I was 15 years old. They started out occasionally I would get a real good one! I dealt with it all my life and I could handle that every now and then massive migraine...I still could work! But 2 1/2 years ago, I woke with a headache and I still have the same one today, it has never completely gone away. I have other symptoms along with my daily headache/migraine and that is when my headaches are really bad, my right eye droops and the right side of my mouth also droops and I look like I had a stroke. I haven't worked in over 2 years and that is depressing not to mention that I have a pain in my brain every day! I have recently been denied disability because they state that I am not DEPRESSED enough. I wasn't and didn't apply for depression! I have recently because I can't work, lost my home and my husband tried his best but it was too much. So I just wanted to let you know that I am happy to know that I am not crazy, I don't have a new disease and I wish the courts would understand or at least try to understand what we deal with in having a headache that never goes away! Isn't that enough??? God Bless

xanax said...

The anti-anxiety medicine xanax is wholly capable of facilitating your war against anxiety as it is the most widely recognized medication to treat anxiety disorders, especially generalized anxiety disorders and altogether Xanax can treat a whole lot of anxieties related to panic disorders and depression. Before you move on to administer Xanax and treat your anxiety, get hold of Xanax tidbits from the site http://www.pill-care.com

Anonymous said...

It is amazing to read all of the postings and your story and know we are not alone. I have had the headache every day now for 12 years and I am starting to crack. I have seen Dr after Dr. and I am so sick of hearing- " It's all in your head." My reply has gotten more snotty over the years as," Like yeah it is how long did it take for you to learn that in med school?" Or the Dr.'s newest question is," How often do you exercise, because you are overweight." Apparently being overweight causes headaches. " My question is how do you exercise when it hurts so bad to even stand up? Thanks for everyone's input.

Anonymous said...

Sounds like it could be cluster headache (one sided, repetitive, excruciating).

www.clusterheadaches.com

Anonymous said...

I have also been having one sided temple headaches for a few years now. I used Topamax for some time and it did help for a while but nothing else has. No one seems to care that everyday is painful. You go to bed in pain and wake up in pain...a good day is when it isn't throbbing as bad and I actually feel like talking to someone. I guess it could always be worse.

david said...

I wanted to make everyone aware of a potential cure for migraine and possibly all headaches. I know that there are a lot of snake oil salesmen out there who just want to make a buck from people who are desperate to try anything and I fit in that category. It involves optimizing your hormone levels and taking some other supplements. If you are interested, please go to www.dzugan.com

Janice said...

Check out "Chiari 1 malformation". I have been thru nearly the same as you and all the other bloggers and have just found out from a CT scan that this is a correct diagnosis. If you look it up you will see why doctors don't diagnose it correctly nearly 100% of the time, but it will show up on a CT scan or an MRI. I live in the States, and I am seeing a neurosurgeon as one of the best options for relief is surgery at the base of your skull. The only med that helps me is Toradol (ketorolac) - when I went to the hospital with the worst headache of my life (the left temple lightning-bolt kind) even morphine did not help. Migraine drugs dont help because its not a migraine, and traditional opiates really don't help. Check out Chiari 1 malformation and you will see how much it fits your symptoms and that of most of the bloggers!