Thank you Carolina.
Oh, Bob. :)
No hijack here. Since you are Type I, you wouldn't have run into this particular misdiagnosis, probably.
Psychiatric therapy is something I sought after the death of my husband. Now, I continue to see my Psychiatrist, because she helps me cope with the mental aspect of having ATN. She has been encouraging, and a true compliment to my treatment. She doesn't even suggest to me that there is nothing "clinically" wrong with me. She knows me better, I think.
You do deal with this with humor and wit. Thanks for sharing it with us! It is appreciated and needed here!
Your friend,
Stef
Bob Snodgrass said:
Not to hijack the discussion:
No Stef, I have TN1.
I have never experienced any "crushing, burning and/or searing and throbbing". I have been so distracted by the INSTANT PAIN, (see also; anxiety, fear and/or paranoia of pain) and complications from the treatments, that I often stumble in describing.
My 2ND radiosurgery (SRS) left a brachial lesion, causing Cerebellar Ataxia, visual problems, short-term memory/concentration issues, seizures, and further demyelinating of that 5th "dude":P)! All complications resulting in my permanent (SSDI) disability, have been sorting out nicely, due to a diligence, perseverance and HUMOR, which I am so Blessed and Grateful to have received. Then there's the PAIN.
Wholeheartedly agreeing that proper diagnosis is paramount, and that "Talk To YOUR Doctor" is key...pity, NEVER dismiss! Thanks, bob
Yes, Carolina. Thank you. I feel that you summed up the situation we face, so frequently, with precision and compassion, in your last paragraph particularly. Very true.
Carolina Thatcher said:
I have a degree in Psychology and clinical practice experience. Chronic Pain can drain us of energy , affect our relationships, affect our work, and our goals, fill us with frustrations . All this may have an effect in the pain itself, making it worse. That is what co morbidity means.
Going to the therapist or psychologist is not a bad a idea, who cannot be somewhat depressed having pain every single day, having to take all these medications that have all these side effects (I am dizzy all the time).
A referral to the mental health professional is a good idea as a co-management or co-therapy of the chronic pain. Going to the therapist does not mean you are crazy or that your pain is made up in your head, It helps with he medical treatment as will make you feel better by managing all the other things that are affected by the pain.
What I don't agree is a dismissal and what I consider admitting failure indicating that "it's all in your head, go to the psychologist". Labeling it with a diagnosis on the DSM-V is plain wrong.
Thank you Richard for advocating for us.
Carolina
Stef said:
Yes, Carolina. Thank you. I feel that you summed up the situation we face, so frequently, with precision and compassion, in your last paragraph particularly. Very true.
Carolina Thatcher said:
I have a degree in Psychology and clinical practice experience. Chronic Pain can drain us of energy , affect our relationships, affect our work, and our goals, fill us with frustrations . All this may have an effect in the pain itself, making it worse. That is what co morbidity means.
Going to the therapist or psychologist is not a bad a idea, who cannot be somewhat depressed having pain every single day, having to take all these medications that have all these side effects (I am dizzy all the time).
A referral to the mental health professional is a good idea as a co-management or co-therapy of the chronic pain. Going to the therapist does not mean you are crazy or that your pain is made up in your head, It helps with he medical treatment as will make you feel better by managing all the other things that are affected by the pain.
What I don't agree is a dismissal and what I consider admitting failure indicating that "it's all in your head, go to the psychologist". Labeling it with a diagnosis on the DSM-V is plain wrong.
Thank you Richard for advocating for us.
Carolina
I really think it may be helpful to look ito the patch, kadian, so something for the pain is always in your system. i hope this helps;
Gloria E. said:
Red.
I join Christi & Stef in thanking you for your time, dedication and determination in being our advocate.
I am one of the many that have been caught in this mind-numbing, frustrating situation.
- First diagnosed, in the hospital after an MRI, with Trigeminal Neuralgia due to compression.
- Sent for surgical evaluation and told I was not a surgical candidate and undiagnosed with any TN.
- Primary Care doctor decided I didn't have compression and that I was having migraines.
- Told my PC doc in words of one syllable or less that I didn't have a freaking headache - it's in my face!
- Refered to neurologist who diagnosed me with Atypical Trigeminal Neuralgia.
- Sent for 2nd surgical evaluation, was told I was not a surgical candidate and diagnosed with Atypical Facial Pain.
- Refered to a psychologist (who I chose because he had a specialty in chronic pain) for "cognitive therapy" and was prescribed Ritalin and was told it would help with energy and depression. It did nothing and I quit taking it after a few weeks because my Primary Care said I was on too much medication and my brain was going to turn into Malted Milk Balls. You were the one who sent me to him, you Dolt! I have not scheduled any further appointments with my psychologist. If all he's going to do is throw medications at me that don't have any effect, what's the point?
- Changed neurologists and was given a diagnosis of Atypical Trigeminal Neuralgia.
- My Primary Care is still clinging to the ATFP diagnosis.
So by this time, I'm convinced that the medical community has gone mad. Since the Vicodin is barely working I have asked my primary care if there's something stonger I can take without all the Acetaminophen and his reply is, "Yeah, heroin." and refuses to give me anything stronger than Vicodin to help with break-through pain. I then asked for a referal to a pain management clinic that I have an appointment with. Not really confident that I'm going to get help there because the lady I spoke with on the phone advised they specialize in cervical spinal and back pain and that I needed to bring a driver with me because I'll be getting an injection. I told her I didn't need injections - just a pain medication prescription, so she scheduled me for an evaluation. Don't know if any of the doctors there will have any knowledge of Atypical Trigeminal Neuralgia so I'm expecting the best, but mentally prepared for the worst.
I'm conpletely disgusted with the level of care I've received and the schizophrenic manner of diagnosis.
Thank you again, Red, for your efforts to educate the medical community on their lack of knowledge.
A HUGE THANKS to our Red for lobbying on our behalf with Peter Jannetta and his colleagues on the Trigeminal Neuralgia Association to re-define "ATYPICAL FACIAL PAIN" to "FACIAL PAIN OF OBSCURE ETIOLOGY" or PAIN OF UNKNOWN ETIOLOGY".
See the re-classification at: http://www.fpa-support.org/2011/10/facial-pain-experts-establish-a-...
and see Red's discussion: TN ASSOCIATION RE-CLASSIFIES ATYPICAL FACIAL PAIN.
This is the most important break-through in the field of Trigeminal Neuralgia in many years and finally gives validity to all of us who have been made to think that the diagnosis of ATYPICAL FACIAL PAIN is a psychiciatric condition and it's all in our heads.
Please comment on your thoughts and experiences on this subject.
I had an appointment with my primary care doctor yesterday and made him read the re-classification on the TNA Face Pain Associations website. I had to explain to him the importance of Peter Jannetta's admission that this is a valid condition of ignorance on the part of doctors, neurologists and neurosurgeons, that has caused so many of us "ATYPICAL FACIAL PAIN" patients untold frustration over the years.
I don't know if he really "got it" and I also had to inform him that Peter Jannetta is the creator of the Microvascular Decompression surgery (MVD) and that his admission that this diagnostic ignorance and nonsense needed to be brought to an end.
Our Red has been able to bring about a break-through in this subject that so many doctors have been taught for too long. I desperately hope that this re-classification will be brought to the attention of medical schools and their curriculum will be revamped to include this information.
WE ARE FINALLY VALIDATED AS LEGITIMATE PATIENTS WHO REQUIRE A REAL DIAGNOSIS BASED ON MEDICAL TRUTH AND NEED TO BE TREATED WITH THE SAME CARE AND COMPASSION THAT HAS BEEN LACKING AND RUINED SO MANY FACIAL PAIN PATIENTS LIVES!!!
Please spread the word to all your doctors, neurologist and neurosurgeons and pain management professionals. Show them the link - make them read this.
Thank you Red for all the time and care that you've spent forcing the TNA Medical Board to admit the ignorance of the Atypical Facial Pain diagnosis.
Thanks for the acknowledgment, Gloria. For whatever this may be worth, I intend in the coming days to revisit all of the websites where I have previously posted contradictions to the "Atypical Face Pain as Mental Disorder" thesis. Janetta, Casey, and their colleagues have provided us very powerful ammunition for driving a red hot stake through this particular medical vampire's heart.
Regards all,
Red
hi red i just joined a few days ago, i dont know what type of tn i have yet, but its a dull pain in my bottom tooth and upper one left side, i was put on 100mg of teg 2 times a day, and the doc gave me a dose pack methylprednisolone, its my 3rd day, i felt better for a day but not today, pain is bad, how long does the teg take to work? thanks so much dean
At 100 mg twice a day, it might not yet be a high enough dose to reach the effective range. Give it a week, and then call your neurologist office and ask about tapering up. Methylprednisolone is a synthetic cortico-stereoid, basically an anti-inflammatory. If you're actually dealing with a facial neuralgia, it's unlikely to do you much good.
Regards, Red
Hi, Red. You have done a magnificent job - we are ALL hugely indebted. Your advocacy has been BRILLIANT.
A couple of extra points: 1. Being British, I am not familiar with the US health-care system, although I've heard anecdotal horror-stories (incl. Michael Moore's film). Excuse me if I get facts wrong. It seems to me that US psychologists/ psychiatrists/ psychotherapists have, (possibly) influenced by the pharmaceuticals, extended the taxonomy of conditions by creating new ones, establishing "marginal" ones, combinations and "incipient"/ "potential" ones. (Again, excuse and correct me if I am wrong). Is this process connected with the present topic? 2. In th UK, at least, the word "idiopathic" is used to describe what you have in mind. Is it relevant here? Best wishes to all, T.
Thanks for the compliment, Tyutchev.
The term "idiopathic" is QUITE pertinent and is prominently used in the article on TNA by Jannetta et al [see link above].
One of the more embarrassing realities of US medicine has been what I call the "psycho-somatization" of pain disorders that have thus far eluded the ability or knowledge base of American medical practitioners to reliably diagnose and treat. As I represented last spring to the practice committees of the American Psychiatric Association now working to revise the Diagnostic and Statistical Manual (DSM-V), there is strong reason to disbelieve the medical validity of the entire range of so-called "psycho-somatic" disorders, including both "complex somatiform symptom disorder" and "conversion disorder". There are no reliable objective methods for making or confirming a diagnosis, and medical literature totally lacks any body of validated observational data to confirm a reliable treatment for the supposed "disorder".
If you're interested in exploring this subject further, please correspond through my web mail gateway at ■■■■■■■■■■■■■■■■■■■. I can send you a "one-of" copy of an excellent article which challenges the validity of this class of diagnostic labels.
Go in Peace and Power
Red
I would like to second that Gloria, we know how hard Red works and at last I feel that he can feel satisfied his lobbying has has a huge impact. It has never been suggested to me that it is " in my head" but I know I would have felt devastated if it had. Thank you Sir Red, you are amazing!
Gloria E. said:
A HUGE THANKS to our Red for lobbying on our behalf with Peter Jannetta and his colleagues on the Trigeminal Neuralgia Association to re-define “ATYPICAL FACIAL PAIN” to “FACIAL PAIN OF OBSCURE ETIOLOGY” or PAIN OF UNKNOWN ETIOLOGY".
See the re-classification at: http://www.fpa-support.org/2011/10/facial-pain-experts-establish-a-…
and see Red’s discussion: TN ASSOCIATION RE-CLASSIFIES ATYPICAL FACIAL PAIN.
This is the most important break-through in the field of Trigeminal Neuralgia in many years and finally gives validity to all of us who have been made to think that the diagnosis of ATYPICAL FACIAL PAIN is a psychiciatric condition and it’s all in our heads.
Please comment on your thoughts and experiences on this subject.
Thanks, Red. I'll think about it. Best wishes to all, T.
I have 2 referrals without miami. One was a dr who I was referred to by a psychiatrist that didnt believe. The other from a dr at columbia which I would like removed. It seems to be fairly common. My symytoms are all over the place so until recently I was treated most unfairly. one feels sicker, emotionally and physically.
If there is anything that I can Do to help in this matter email. If your case is baffling and confusing as mine is, insult by the use of seeing various psychologists or others is common place. Now that I have been vindicated with Reds help and some real Drs., I dont want anyone to go through this nightmare. You only become sicker and more depressed.
Hi, everyone!
I wanted to share with You my expierence, maybe it can be helpfull.
Yes, my last neurologist (head pain specialist) had referred me to PSYCHOTERAPIST, because of my long illness history (5 years), haven't find right medicine for effective for pain management. Lots of diagnosis, but last :
SOMATOFORM DISORDER
DISFUNCTIONAL SYNDROME WITH PROSOPALGIA
I am wondering why she is writing them both, maybe because she is not sure yet. I searched in net what this prosopalgia is, as far as I can understand it is referred to Trigeminal neuralgia. I am not sure if my neuro knows about Type 2 TN...
So..I went to this shrink for 4 sessions, spent lot of money, but didn't found it helpfull at all for me.
The other think I wanted to share, maybe will sound like fairy tale to some of you,
but I still with risk and tell you because people here are so desperate sometimes,
and have tried almost everything. Also I really feel like at family and home here.
i don't know what's your attitude to healers at America, United Kingdom and Australia,
but in my country we have lot of them and some of them has strong abilities. For now I am visiting
soother/healer, who sees/feels following:
my bilateral pain in trigeminal 2nd branch is caused by irritation with vein on which is aneyrism http://en.wikipedia.org/wiki/Aneurysm ) which is pushing on trigeminal nucleus in middle of brain.
When I asked him why doctors don't see it on MRI, he said, that it is just 3mm small, but we have micro
structures in brain and I am very sensetive and even small thing like this can make such a big disaster.
He described me picture so logical and it sound for me so similar like TN Type 1 cases with arterys conflicts.
Doesn't sound like bullshit at all...
If You guys here ( I know some of you are very educated and dangerous :) have viewpoint of how true and possible from anatomic viewpoint is diagnosis of my soother I would be happy to hear some words.
Wishing you all the best,
Stase
Hon, if you paid the "healer" for his time, then I'd say you're being taken for a ride, even if he believes his own statements (which not all of these folks do). Please understand that I make this statement as one who has often been accused of being "psychic" (empathic, telepathic or clairvoyant) myself. There are many things between Heaven and Earth that human science does not yet understand. I must simply voice my reservations that the vocabulary used by the healer you saw is any indication that he understands more than your doctor does about nerve disorders.
A 3 mm aneurysm would be visible on thin-slice sub-millimeter MRI. This is something your primary physician should be able to confirm or eliminate in rather short order. Please ask him or her to prescribe for the imagery.
Now... that said, here's another and more positive4 dimension of the same story. Recent advances in neuro-imaging and Functional MRI are revealing that there may be a physical neurological basis for the phenomenon we call "placebo effect". When people are instructed by a confident, sympathetic and supportive doctor, they do better than if their relationship to the doctor is neutral or negative. fMRI confirms that there are concrete differences in the activity of both cognitive and autonomic regions of the brain under randomized controlled double-blind trials conditions. The piece of this puzzle that we don't yet have concerns how this underlying observable reality might be turned into a reliable therapy of self-help or physician help.
There is an excellent book out of the 1990s that you may find worth reading: Dr Bernie Siegel, MD wrote "Love,Medicine and Miracles" about the roles of non-traditional medicine as supportive therapy in cancer and heart patients. It has long been known, for instance, that patients can regulate their own blood pressure, emotional affect, and anxiety states by the use of regular mindful meditation. Creative visualization has had a role in the spontaneous remissions of Stage III cancers. There are other phenomena as well.
So go talk with your doctor about having another MRI series done to either confirm or overrule your healer's surmise. The exercise may be constructive, if it yields a better program of treatment.
Go in Peace and Power
Red
Richard,
Thank you for your message and opinion, I got new ideas and understood some new things!
But I have to tell I am not so sceptic as You, but You are right it is better to check and if soother
is sure about himself he also will not be afraid of that kind examination as MRI.
I found Your advice of new MRI very helpful, Thank You! I don't have MRI in sub milimetres.
But if this thing (Aneyrism) is in middle in brain it is unpossible to do something surgical I think? That's
why I didn't react and kept on going to this healer because I realize that surgery anyway isn't possible.
Also they usually check central arteries not veins on MRI, am I right? Another thing with what I was stuck
how to tell my neuro that I want new MRI, because I cant tell her story about healer, doctors are getting usually
getting angry when hear smth like that.
That's very interesting what you are writing about placebo, I more or less believed in these things before I red your message
of these experiments. I also have red some books like you recomended, Thank You! I believe You it is 100 % truth,
I myself have underwent Biofeedback training and have made sure that we can regulate even our temperature ;-)
Little bit about this diagnosis "somatoform disorder" in which you have been interested in...some while ago I found one book in internet "Evidence Based Cronic Pain Management", there was one chapter named
Chronic Idiopathic Facial Pain/Persistent Facial Pain/ Atypical Facial Pain
there were some medicine listed which helps , number 1. (Amitriptiline), are You familiar with this book?I can send you if you want this chapter or you can google.
As I understand, in your country term "Atypical Facial Pain" doesn't exist anymore, and it is You who won this fight,
Congratulations!!!
The "fight" is a long way from finished, I fear -- there are still over 300,000 "hits" on the term Atypical Facial Pain if you google it. However, several of us are chipping away at the issue. If you want to read it, I can also send you a fascinating medical literature article done by two psychiatrists who examined a mixed group of patients with diagnoses of Trigeminal Neuralgia versus Atypical Facial Pain. Except for the age of the patient groups, they could find no means of discriminating between them based on their medical records. However, they jumped to the conclusion that the experiment had suffered for lack of detailed socio-psychological data on the patients. Wrong answer, but they ignored the likely real answer: the patients labeled with Atypical Facial Pain actually had forms of TN that had been mis-diagnosed.
The term "chronic idiopathic facial pain" was generated by the International Headache Association, in 2004. It is fairly widely disseminated and accepted as an alternative to "Atypical Face Pain". It also does not necessarily signify a psychosomatic disorder.
About the aneurism (if that is what you have): if it is responsible for your facial pain, then it won't be in the middle of your brain because that isn't where the trigeminal nerve is. To cause your face pain, the aneurism would have to be down in the vicinity of the brain stem where the nerve emerges. In that area, it should be operable by direct surgical exploration or possibly by Gamma Knife. Talk with your physician about this one. If the healer suggested an aneurysm in the middle of your brain is causing your face pain, then he has the physiology wrong.
Regards and best,
Red