HEAD ON. APPLY TO THE HEAD AND THE HEADACHE IS GONE...
HEAD ON. APPLY TO THE HEAD AND THE HEADACHE IS GONE...
HEAD ON. APPLY TO THE HEAD AND THE HEADACHE IS GONE...
Posted on 10/24/2006 4:48:44 AM PDT by grundle
Barbara Cullen, 52, suffered from 'cluster headaches' for three years. The pain was so unbearable she considered taking her own life. But a remarkable new treatment has left her virtually pain-free.
Here, Barbara, a lecturer who lives in Grimsby with husband Fred, 57, a financial adviser, talks to Natasha Coutenay-Smith about her experiences, and her surgeon, Mr Lawrence Watkins, describes the operation:
THE PATIENT
The first time that I experienced a cluster headache I felt as though I was being attacked with a pneumatic drill. Despite the fact it was Boxing Day, I knew my headache wasn't anything to do with Christmas excesses. I've had migraines in the past, but this was like a pain I'd never known before.
It was so bad I couldn't even sleep it off. And it persisted day after day. After five days of agony, I was convinced I had a brain tumour and called the GP.
He could see I was in horrendous pain and admitted me to hospital. I ended up staying a fortnight, during which the pain continued pretty much constantly. It seemed to come in waves, and even during a lull it never died away completely. Nothing, even intravenous morphine, provided me with much relief.
A CT scan ruled out the possibility of a brain tumour, and no one seemed to know what was wrong. Eventually, I was sent home armed with morphine tablets and referred to a neurologist at Hull Royal Infirmary.
After running more tests, the neurologist turned to me and said: 'I'm afraid you're unlucky enough to be suffering from cluster headaches.'
The condition affects more than 120,000 people in the UK and is more common in men than women. Headaches come on suddenly and reach full force within five to ten minutes, before being maintained for up to three hours.
I was prescribed large doses of steroids to help ease the pain, which made a difference within 24 hours. But because of the adverse effects steroids have on the body, I couldn't stay on them long term. While it was a relief to know what was wrong, it was worrying to think we hadn't found a solution.
Over two years, my neurologist tried me on various pain-killers and also gave me portable oxygen to help keep the headaches at bay.
Although I was able to continue working, I had a lot of time off because I suffered from eight to ten attacks a day, which could last an hour. During an attack, I couldn't even touch my head because it hurt so much. Even in between, I still had what most people would describe as a bad headache. Not surprisingly, I became very irritable.
My life had changed so much. Before, my husband and I enjoyed walking, cycling and surfing together. Now, a weekend away involved carting tanks of oxygen.
At times, I got so sick of the agony that I considered taking my own life. It comes as no surprise to me that the condition is nicknamed 'suicide headaches'.
Then, last year, I was referred to The National Hospital for Neurology and Neurosurgery in London. After extensive tests, I was recommended for a surgically implanted Occipital Nerve Stimulator (ONS). It's a device that stimulates the occipital nerve, which runs from the top of the spine to deep within the brain.
It consists of a battery pack implanted into the abdomen. The box, the power source, also has a microchip and an aerial coil so it can be turned on and off by remote control from outside the body.
I was told two very thin parallel wires would run from the box up my body. At the end of each wire are four electrodes, which would be placed onto the occipital nerve.
When the power is turned on, the tiny electrical impulses would be carried from the occipital nerve through to the brain, where they override the abnormal activity that triggers the headaches.
Although I was warned the ONS works for only two-thirds of patients, I pinned all my hopes on the procedure. I don't know what I would have done had it failed.
However, I faced a battle with our primary care trust to get funding as the treatment is so new they didn't recognise it. It wasn't until May this year that the operation got the go-ahead.
For the first hour, I was awake. My surgeon shaved the back of my head and numbed the area using local anaesthetic. Then, he made a small incision into the back of my neck above the occipital nerve.
He told me that when the electrodes were on the right place, I would feel a strong tingling sensation.
As he moved the electrodes over the area, I reported what I felt so that he could locate the right spot. Then, I went under general anaesthetic. Within 48 hours of surgery, I noticed that my headache was, for the first time in years, easing.
I've since gone from strength to strength. The longest I've gone without an attack is two weeks, and my surgeon believes I'll keep improving.
Without the operation, things might have got to a point where I decided I couldn't carry on, so really it saved my life.
THE SURGEON
Lawrence Watkins, consultant neurosurgeon at the National Hospital of Neurology And Neurosurgery, London, says:
The criteria for having this operation are strict. You have to be essentially disabled by your headaches and have more than 15 headache days a month. We are the only centre in Europe that offers this procedure and we started carrying out the operations only three years ago.
Since then I've done more than 40, and I seem to be doing more year on year. The procedure is relatively successful and low risk.
We believe cluster headache results from abnormal activity in the hippocampus, which is why the ONS works. Much about the brain's intricacies is unknown, but the fibres from the Occipital Nerve run deep into the brain.
The nerve is not actually causing the problem, but it provides us with a useful pathway by which we can get electrical current to the affected areas. When there, we believe the current modifies the unusual activity.
For the first half of the operation, the patient is awake. After shaving the back of their head and numbing it, we make a small incision and thread the electrodes under the skin using the equivalent of a big needle.
We use X-rays to help guide us, but feedback from the patient is invaluable, which is why they must be awake.
Contact with the occipital nerve results in a tingling feeling on the back of their head. The stronger it is, the closer we are to the right spot.
The eight electrodes, four on each wire, are positioned over the occipital nerve. We use eight to maximise our chances of hitting the right spot and all the electrodes can be powered independently. Once we've positioned the electrodes, the patient is given a general anaesthetic.
The rest of the operation involves what is essentially the plumping of the powerpack. First of all, we implant the battery pack into the fat on the patient's stomach through an incision. Then, we tunnel the wires from the neck down to the battery pack.
To do this this, we make a small cut in the collar bone - essentially the halfway point between the battery pack and the electrodes. We then use a hollow instrument to thread through the fat just below the skin's surface. Through this, we thread the wires to meet the pack.
During this operation the biggest cut made is the one on the abdomen, which usually heals up well. The patient usually experiences a bit of bruising along the path of the wires, too.
The next day, using patient feedback, we programme the ONS and work out which of the eight electrodes are having the most dramatic effect. Most patients keep it on for 24 hours a day, although some like to turn it off while they are doing things such as driving because the tingling sensation distracts them. Over time, as headaches diminish, it can be switched on only if headaches worsen.
All patients with cluster headaches jump at the chance of this operation. And it is wonderful to meet them later and discover their life is pain-free.
Barbara's story will be told on The Brain Hospital, BBC1, Wednesday, November 22, at 9pm.
If only there was a cure for tinnitus
wow,,,i never have head aches,,,but, a few years ago i had a head ache that was so bad i was vomiting...had to go to er, they gave me strong meds and it still hurt very bad. they thought it was menengitis but it was not. i thought it was west nile myself...anyway, i will never forget that awful pain.
I used to get migraines of the screaming kind. I would have to go into a dark room, lay down, put a wet cloth on my head and take two tylenol with codeine tablets.
Then I stopped watching network news. The headaches went away.
Seriously, they are nasties. I still get them occasionally. I changed my diet and learned stress management techniques. That seemed to reduce them.
Can't hear you above the ringing in my ears. What???
UK Socialized Medicine -- she heard of the procedure LAST YEAR, but had to wait until May of THIS YEAR, with debilitating headaches, to get approval for the operation.
When my family visited some friends in London back in 1994, our daughter (who was 1 1/2 at the time), was sick one day so we left her home with our friend while we went to london. While there, the friend just took her to a doctor, and got diagnosed and treated for an ear infection (which was great because you know how it is to fly with an ear infection). The treatment was entirely free.
On the other hand, her mother needed a new hip, but was struggling through for as long as she could before getting it because they only let you have one, and once you've done it and it wears out you can be worse off than before. So rather than get it done young, people suffer through until they simply can't move anymore, and THEN they get the operation.
I'm curious about what you changed in your diet?
For me, after suffering with increasingly worse headaches over the past number of years, I finally discovered that I'm gluten (wheat, etc.) and casein (milk) intolerant. Eliminating those from my diet has reduced the frequency and intensity of my headaches considerably. I'd still like to know why I get the ones I still do, but perhaps it's simply an issue of cross contamination. It's pretty difficult to completely avoid all gluten and casein.
My DH is a clusterhead for 15 years now. It has to be the worst pain I've ever witnessed.
There are numerous treatments but most amount to treating the pain rather than finding a cure . . . .it's a nasty beast!
Tinnitus. Oh man, you said it. I've had it about 10 years now.
I think there is.
I have been taking 2-4 grams of fish oil a day and Magnesium supplements.
My ears don't ring anywhere near as much as they used to.
Most folks are deficient in the EFA's, and even more are woefully deficient in Magnesium.
The worst headaches I ever had resulted from a pinched nerve in my neck. One trip to the chiropractor and they were gone.
UNTILL recently when he went to a doctor and experimented with BOTOX injections in his forehead. He remains totally pain-free, and looks pretty good as well :)
I understand there are "clinical trials" for this.
sw
I'll try it
How do you deal with it. Mine has been non stop since April
My wife is a clusterhead. They seem to progressed from seasonal to constant. Her mental outlook is not too good.
This article is serious news.
I, too, have suffered from cluster headaches since I was 12 years old. I'm now 47 and happy to say that as I get older the attacks become less intense and further apart in time.
There was a time that I literally found myself searching for a power drill so I could drill a hole over my right eye and let the monster out. Luckily I didn't find one.
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