| If you find this information
useful, and you would like to discuss trigeminal neuralgia
(TN)
further then you can give me a call or text me on 07749 818095. Further
advice can also be found by using the links to the left and
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From Michele (angus6398@fuse.net)
Hi.
I wanted to thank you for your website. I am 39, mother of 5
and have only suffered this horror for 6 months so far. I am
thankful to hear other stories that let me know I'm not
'crazy'. My pain is (and always has been) bilateral. However
the intensity may shift sides a bit.
I'm on Lyrica, Percocet, Valium and Zoloft. Neurontin/Gabapentin
could not give enough relief (side effects took my thought
process/ memory/ personality away). While in the hospital
the Neurologist there took me off the Neurontin and put me
on Tegretol ... for me it was like waking up and both of my
cheeks were shattered. The pain was excruciating. Now I'm on
Lyrica and pain is breaking through again. Cranial Sacral
Therapy provided AWESOME relief for only 1 hour. I'm looking
into having it more frequently.
I'd love to know if anyone is in the US and close to OHIO
any referrals to doctors who understand this.
I am also curious if others have children with medical
difficulties. I have a daughter with a chromosome
abnormality and am looking into seeing if there is a link.
My other four children have also had unusual medical
circumstances.
Oh yea, my only brain MRI (with contrasts) was normal. I
would be interested in whether that was the case for someone
else and did they ever have repeat MRI's? If so were they
ever useful in identifying the direct cause for pain?
Thanks Simon for your site.... this has been the best I've
found.
Michele Hughes |
This
website was created in the hope that many more people would be helped
through the terrible condition known as Trigeminal Neuralgia. There
are accounts of procedures such as Microvascular Decompression and Radio
Frequency Rhizotomy. On the
website you will find many links and resources to individuals and organisations
offering hope and advice for people suffering from this disease. There
is also a forum, guest book and a new chat room which is totally free
to use. Please help and contribute in any way you can by posting to
the guest book, adding to the forum, or chatting to fellow sufferers
in the chat room.
My Story
I
first suffered from Trigeminal Neuralgia (TN or tic douloureux) in 1995
when I was 28. At this time I didn't have a clue what the pain was that
I was suffering from. I was in the RAF and had just returned from a
tour of duty in the Falkland Islands. During this period I had the odd
twinge, but in no way could this be described as pain. On my return
the pain increased, so I went to see many dental specialists in the
RAF. I was treated with root canal treatment, Temporomandibular Joint
Disorder. For this the dental technicians made me a couple of splints
for my bottom teeth. These were 1 and 2mm in thickness. I wore them
for approximately 6 months, but unfortunately they made no difference,
as I wasn't suffering from it. The intense pain affected an area on
the right hand side of my face from the chin to below the right ear.
None
of the treatment that went on for about 18 months proved successful
because at this time they didn’t know what I was suffering. The
pain got so intense and my job didn’t help as I worked on nights
as a radio operator. Part of my job was to wear head phones, these only
made the problem worse. Talking was difficult, eating was hard and life
wasn’t too pleasant. Temazepam did no good either, the pain was
the worst I had ever suffered.
The
turning point in my condition came a year after leaving the RAF when I
discovered the Internet. I went to Google and typed in ‘intense
facial pain’ and waited for the results to come back. I found all
sorts of links, but one of the sites listed struck me. I went there and
the symptoms described were very similar to what I was suffering. The
pain is best described as a bolt of lightning shooting through one side
of the face. The pain is intense, perhaps in my case going on for a few
minutes at a time. There was very little that could be done to halt the
onslaught. Direct pressure over the area had some affect, but didn’t
take the pain away.
The
triggers for the pain can be as mundane as brushing your teeth, a breath
of wind or simply talking. Winter and its icey winds were a lot worse
than summer warmth. But by far the worst offender is eating. Eating can
be a nightmare, during the worst episodes it wasn’t uncommon to
lose weight. I wouldn’t waste my time eating things like apples,
lettuce and other food that didn’t contain any calories. While to
most people these foods are fine, to a TN sufferer like me these are foods
best avoided, otherwise you will lose weight. When driving a car even
the road surface would have an affect on whether the pain kicked in or
not. Even when there was no pain, it was sitting there in the background
waiting for the trigger to release its latest onslaught of ultra pain
- imagine tooth ache, only 10 times worse! - honest.
Having
found what I thought was the problem I was suffering from I took my findings
to Goole Hospital. The Ears, Nose and Throat specialist confirmed what
I thought and he prescribed me Tegretol. Almost immediately I felt some
relief from the pain. Initially my dosage was kept low until I was on
the high end of the dosage. The problem I found with Tegretol was memory
loss, and a general feeling of ‘fuzziness’. I couldn’t
come off them as the pain was too intense, but they were becoming less
and less useful to my condition. Sometimes, dependent on the dose I took
that day, and the amount of food I ate I had a feeling of slight overdose
- dizzy isn't the word. It only happened a couple of times, and it wasn't
pleasant.
The
specialist at Goole referred me to a Consultant Neurosurgeon at Hull Royal.
Here I had an MRI brain scan in the Hull Royal Scan Unit, this confirmed,
and gave a better indication of what was going on. Armed with my scans
I then went to see one of the Neurologists at the hospital. He thought
it be a good idea if I was admitted as soon as possible for an operation
to numb the pain. I was admitted into hospital on the Monday morning a
month later.
Radio Frequency Coagulation Operation
The operation I was going to have was a Radio Frequency Coagulation.
This is administered under a general anesthetic. A needle is inserted
through the cheek to the area where the nerve and blood vessel is twisted
and with the help of xrays, the previous scans the surgeon turns on the
heated tip of the needle to cauterize the nerve. The operation I was told
took approximately 40 minutes altogether.
On
waking from my operation I felt fine. All my pain had disappeared, and
within an hour I was eating my first meal, (turkey and vegetables, with
ice cream to follow) with no pain in 4 years! where there was previously
a trigger point around my mouth on the right hand side, it now was quite
numb – quite a pleasant change. This numbness didn’t cause
me any problem.
Pain Returns with vengeance
I
knew the operation was only a temporary reprieve from the pain. After
18 months having no pain, the pain came back once more with a vengeance.
What made my condition worse was having an ulcer in the right hand side
of my mouth on the TN side. The ulcer had the effect of constantly kicking
the TN nerve into action. It was a terrible thing as the ulcers were virtually
always there due to me trying to rub the pain away with my hand so causing
slight injury to the gums. Also I would ‘swish’ my tongue
around in my mouth to try and relieve the situation. Of course winter
is always the worse for TN sufferers, if the cold doesn’t kick it
off then the scarf or the hood of the jacket would start it.
I
then returned to Hull Royal to see the specialist, he had already warned
me this would happen, so it didn’t come as a real surprise. Once
more I was put on Tegretol, but the dosage that assisted my pain relief
was quite high and it affected my memory once more, and made me quite
dizzy. The specialist had me on this medication for a number of months.
I also tried Neurotin - this had very little effect on the pain.
Acupuncture and Chinese Herbal Medicine
During
this time I worked part of my week in Doncaster. I heard from a chinese
friend that there was a good acupuncture clinic in the town. I visited
the practice and the acupuncturist thought that it might take up to 8
sessions for the acupuncture to have a noticeable effect. During the session
I would receive approximately 12 or 13 needles in various parts of the
body, most of them were on the face, some were directly into the trigger
area just under the right had side of the mouth. It was during this phase
that I became quite in tune with what the pain was exactly like. It was
weird to 'listen' to the pain. Due to me having a dozen or so needles
in my face, and the room been very quiet, I could do nothing except grin
and bear it. What I noticed was the pain came in waves. Each wave almost
always lasted for 45 seconds, occasionally it would drop to 20 seconds.
The time in between the peaks of the pain was always 1 minute. During
the pain peaks the needles that were protruding out of my face would quiver
in time with the lancing pain that was going on. The acupuncturist listed
to my observations and said that he didn't know anyone else that was as
in tune with the pain as I was - I had nothing else to do than cope. After
8 sessions at £25 each, they had made no difference - except for
the bank balance. They say that acupuncture treatment is also in the mind
- maybe my mind wasn't tuning the pain waves out like it ought to - I
tried to be receptive to the acupuncture, but to no avail. I was also
given a session of Chinese Herbs, while they maybe good for some
conditions, the treatment did not even start to halt the pain which was as
intense as ever.
Microvascular Decompression
It was about this time that my appointment had come through to see the
Neuro Surgeon at Hull Royal Infirmary. I was told to come back and see him
if the pain returned. I took the first opportunity. When he saw me he had
no hesitation in putting me in for a Microvascular Decompression
procedure.
It
was quite a major decision to go a head with the MVD operation, as I have
a young family. But the extreme pain caused by TN was more than taking
my life over. It was also affecting family life. I knew that a successful
operation would be a new lease of life for my family, and me. A number
of weeks went by, and then I had a call from the surgeon asking if I still
wanted to go ahead with surgery. I said that I did, and a week later I
was booked into Hull Royal for Surgery on the 14th January 2003.
Monday
came, and I was told to prepare for up to a week in hospital. So my bag
was packed and I arrived in the morning. Nothing really happened all day,
I had given up my medication that morning, so I could feel the full effect
of the operation afterwards.
Tuesday,
I was booked in for the operation at approx 10am, I had not eaten since
the previous day so was feeling quite hungry by now. At about 0930 the
preoperative nurses came and collected me to take me down to theatre.
The last thing I remember that morning was been given the anaesthetic,
it probably took 30 seconds to knock me out.
No Pain
I awoke from the operation
at about 1430. The operation I was told took approximately 4 hours. Feeling
rather groggy I woke up, feeling no pain at all. Lots of nurses were walking
around asking how I felt.
I
was taken up to the ward, where my wife Wendy was waiting for me. She
was so pleased that I was no longer in pain. Within a couple of hours
from the operation the surgeon was doing his rounds, he came across to
me and told me that the operation had been very successful. He said that
the operation had taken longer than expected as the trigeminal nerve and
the blood vessel were twisted in such a bad way, however he said he was
pleased with the outcome.
The Microvascular Decompression Procedure.
The prep team shaved the right hand side of my head at the back behind the
ear, and then he surgeon created an incision about 3 inches
long, the hole in the skull was a good bit smaller. There is now a tiny
Teflon pad that separates the nerve and blood vessel. The opening was
closed with 13 staples. I was told that the offending blood vessel was
very twisted comared to what it should be like, this was str
One
of the main problems after the operation was moving my head. Part of the
surgery involves cutting through quite a few muscles that turn your head.
This was extremely stiff. If I wanted to look behind me I had to turn
around bodily.
Also
where the operation is performed on the brain, it is very close the part
of the brain that controls sickness. Everything I took in the form of
food or drink I would bring it up virtually straight away. This lasted
for a couple of days, but after this my eating was back to normal.
For
the rest of the week I remained in hospital gaining my strength and stability
once more. They didn’t want to let me out until I had been to the
toilet properly. Once I had done this I returned home on the Saturday
tea time. So I got home on the fifth day.
I
was told to take 4 weeks off work to recuperate. Ten days after the operation
I had the staples removed, this eased up the scar pulling. My neck was
still a little stiff though, but this soon relaxed.
I
returned to work towards the end of February. During March I had a follow
up appointment with the specialist, he was pleased to discharge me from
his books.
Staples
in : Staples
out :
July 2007
Its now over 4 years since the MVD operation, and I am pleased to tell
you that I still have no pain at all. Very rarely I will have a slight
numbness around my chin, especially if it is very cold.
I
am quite happy to help anyone that contacts me - please phone 07749
818095 - a UK mobile phone. If you want to discuss my treatment options,
or any of the procedures I had please ask.
Thanks
for the feedback regarding this site. By adding your experiences to the
guest book you are helping others in living with and making an informed
decision with treatment options
This
site was created with the hope that it will help fellow sufferers, or
give guidance for people who have friends or relatives with TN.
If
you find this information useful, please sign the guest book - just so
I know people read it. Also if you would like anything adding, please
email me and I'll do my very best to make it happen.
This
website is aimed at bringing further insight and knowledge into the world
of TN, and a better understanding by the medical community from a patient
perspective.
Thanks
for reading..... and if anyone would like to contribute ideas to make
the site better, please contact me.
Simon
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