Growing

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Hello friends,

Albeit, I am having the worst day of the month, so far, pain wise (usually, I am more on the pain free side, these days and ever so thankful), I was surfing and randomly typed in the search words "Atypical Trigeminal Neuralgia Group".

'Lo and behold, what popped up as #1 using the Yahoo search engine, but our wonderful group here.

Don't be alarmed, the only reason why I was able to go straight to the group is because I was already logged in.

I want to thank you for all of your thought provoking questions and thoughtful answers. Thank you for caring for one another.

The first night I registered for Living With TN, I immediately began to think that "Atypicals", who are harder to treat, because there is far less known about the cause of their condition to discuss their journey and exchange ideas which may be of help to one another.

To all who have joined, we appreciate you being here participating and interacting, being there for one another the way that you do.

Hopefully, as our group continues to grow and flourish, it will help to produce a buzz in the ears of those who already specialize in "facial pain", who may also be looking around the internet in for research, and stumble upon a growing group with this rare disease. How exciting, that we could make a "ripple" in the lake which may lead to scratching the surface of unraveling this mystery, a mystery that even baffles people like the "Head and Face Pain Neurology" specialist I say, who told me. "We don't know what causes it".

Perhaps, they never will, but I hope for more humane medicinal treatment of Atypical Trigeminal Neuralgia.

Bless you all.

Your friend,

Stef

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What a very gracious post Stef, but then we know that is you through and through. The truth is, many different things cause Atypical TN. Injury, auto-immune disease like M.S. or demyelination; certain meds, surgeries, and many unknown causes. I just sent you an email. Thanks for your message.

Hugs and prayers, Sheila

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Oh, Sheila, you have made such important contributions to this page, I am very grateful to you!

You are correct. Science has unearthed many causes of ATN, but they have yet to find any answers besides medications. The problem seems to be, to me, is that physicians seem to, more than not, try using medications which can be VERY effective in alleviating the symptoms of Type I, TN. It seems to me that more Type II patients need pain relief, a treatment of the symptoms, whatever works, not excluding Opiate Therapy, if it is indicated.

The focus of the healthcare community, right now, before there are corrective surgical procedures available to ATN patients, they should try as many combinations of medication that they need to before giving up on giving us "quality of life".

Thank you for responding to my post. You have a lot of experience to lend to us, as your journey with the disease been of epic proportions. You are absolutely correct about some of the possible causes of ATN. That physician was tailoring her response for me, because compression has never been found.

I have read before that some of us are very in tune with our own bodies. I believe it. I have always thought that my problem was caused by demyelination of some unknown origin. M.S. was ruled out. From what I've read, the was my symptoms presented would indicate slowly progressive demyelination. But, we both know there is no cure for that, at this point.

My hope is that our membership increases to the hilt and catches some eye of some caring, compassionate physician who would like to study, and possibly search for cures for the different possible causes of this life changing disorder.

Maybe I am having delusions of grandeur, but I wonder, if at a certain point, people in the medical community will begin to take notice of our page, which I think is the largest ATN support group on the web, right now! (correct me if I am wrong) It's rare. It's agonizing. Atypical Trigeminal Neuralgia definitely merits more research!

Hugs and prayers right back at you! :)

Your friend,

Stef

H

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Latest research I read indicated that certain oils and fats help restore the demyelination, such as Omega 3s and 12's, and vitamin D, and don't buy all fat free food. Your nerves and brain need fats.

Thanks for your kindess even when you are suffering so much. Today is one of those days that feels one week long!

You can catch up by reading my blog if you feel well enough. http://bluebirdyliving.blogspot.com .

Sheila

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Hi Stef, What about being pro-active and sending the link to the web site to a range of Neurology institutes, any top specialists etc. As you say, the site is full of people experiencing the same symptoms. I cannot believe this condition is so rare. It seems to me there may be many people suffering the same symptoms being totally undiagnosed. Some Doctors are clued up, some are not. I have a degree in Pharmacology, I understand how the body works and how drugs affect it - I studied this at University for 4 years. There may be a number of reasons why this condition comes to the surface and there is a mass body of people on here that are a ready made research study waiting to happen. Maybe we should start our own questionnaire, to understand the age, health, presenting symptoms, to see if there are any trends which will help Doctors to understand this condition more. As for medication, I think we may be a long way of controlling this adequately, unless there is some understanding of how or what causes this. The only way is forward from this. If others are not taking note, maybe we should make them taken note. This thing I know, there is mass of information out there which is probably not being coordinated. It is web sites like these that are the start of gathering people and information together. Somewhere there is a clue in all this and the only way forward is to find it. In the years I studied at University, the one thing I did learn is that for all we do know about the body and how it works, there is vastly more that we do not know about how it works. The funny thing is, my research project I completed in my last year for my degree was on nerve conduction and how different chemicals affected conduction. Looking back, that I think is quite ironic. Whilst I am not saying that understanding the cause may lead to a cure, it may lead to better control and medication. I still have a sneaking suspicion that one of the causes could be a change in hormone levels or some other chemical in the body, which leads to changes in conduction.

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Hi Stef,

Sorry to hear about your pain condition. Hang in there, The Storm will pass.!. I KNOW our group will grow and flourish. In the short time I've been a member, many new people have found the site. Your contribution of hard work and dedication

have benefited the rest of us so much. Take a deep breath, let it out slowly and feel that we are all thinking of you and wishing you well.