Pains that go down into the chest?

Hi,

I'm new, I come from France, I Gpn since 2008 and I have trigeminal neuralgia. I had surgery for trigeminal decompression, but the operation was a failure, and then in December 2010 a Gamma Kniff. For now I still suffer horribly.
I have not had surgery for GPN, my surgeon said it's too dangerous.

Pain down to the chest, it makes it out of GPN?
Do you know this drug, the ZEBINIX?
Have you had surgery GPN?
Thank you for your answers and courage to all!

Hi, I also have GN and 4 years ago a surgeon at the U of Pennsylvania said it was to

dangerous for me. The medication takes away the pain but makes me stupid and I cant remember

anything, I cant work....

I have memory loss sometimes, it is the secondary effects of Zebinix and Lamictal
I either can not work! Do you have pain going down into the chest on the side of your neuralgia GPN?



Elle Xs said:

J'ai des pertes de mémoire parfois , ce sont les secondaires effets de Zebinix et Lamictal
Soit je ne peux pas travailler ! Avez-vous des douleurs de descendre dans la poitrine sur le côté de votre névralgie GPN ?

I had surgery at the University on Minnesota with Dr. Stephen Haines for trigeminal and GN/Vagal decompression, one surgery, 2 years ago and have been painfree since. There is definitely hope if you find the right doctor who performs decompressions frequently. I never had chest pain. I had successful pain relief with a combo of tegretal and trileptal with no memory problems(sodium levels dropped too low however). Has your doctor ruled out MS? Keep up hope!. There is a cure! And answers.

Elle X , I had the surgery for GPN 3 years ago and before surgery the pain was going down my neck into my chest. My surgeon could find nothing wrong or against my GP nerve so he severed it and a portion of the vagus nerve. 80% of my pain in my mouth was gone and 100% of pain. Going up to my eye and in my neck down to my chest. To me the surgery gave me back my life and was well worth it but I did have side effects so it is not to be taken lightly. Good luck and you have my prayers.

Hi Elle, I suffer from both GPN and TN. Mine is attributed to the fact I have MS so it is not able to be operated on. I get GPN severely with attacks lasting for many months in my throat, ear and tongue. Severe pain constantly every 3-5 minutes 24/7.

I have never had pains in my chest though. However, the GPN nerve runs into the Vagus nerve which controls our heart and breathing. So I guess it could happen, although first thing I would be asking does this pain in your chest feel like nerve pain? Is it different? Compare it to what you know of your other pain. Does it come and go? Is it sharp, dull or stabbing or continuous? Are you experiencing shortness of breath etc? I'd be thinking about all that. BUT more importantly ANY pain that lasts for more than 10 minutes in the chest MUST be checked. So I would advise you to see your GP or hospital and get them to examine you and have an ECG done if this is a new symptom. It is better to be safe than sorry.

The medication you are on is an anti-epileptic drug. It is used to try to block the nerve messenging system from the brain in hope that it will stop pain signals, therefore give you relief. It can make you very tired and dizzy. It also take quite a number of weeks before you will see true therapeutic effects if it is going to work. Unfortuantely these drugs work for some and not for others. All anti-epileptic meds have a lot of side affects, but most common are the tiredness and dizziness. Usually the body adjusts after a few weeks. Generally you are started on a smaller dose and it is increased. NEVER just stop taking it without speaking to your doctor as many of these medications must be tapered down slowly. Also it is really important with these medications to take them around the same time every day to get maximum benefit.

The only reason one may be taken off the quickly (but under medical supervision) is in the case of severe reaction. Which brings me to my next question. Has this pain in your chest started since commencing this new medication? If so, see your doctor as soon as possible as it may be not right for you as this medication can cause palpitations, it can cause pain, numbness and tingling in some patients. So if your pain started after commencing this, please go and speak to your doctor.

Suzann thank you for your answer,


What side effects did you have after your operation GPN? Are they serious?
You had a nerve decompression IX?
Thank you for your prayers.
soon


Suzanne said:

Elle X, j'ai eu la chirurgie pour GPN il ya 3 ans et avant la chirurgie de la douleur allait dans mon cou dans ma poitrine. Mon chirurgien peut trouver rien de mal ou contre mon nerf GP si il a rompu et une partie du nerf vague. 80% de ma douleur dans ma bouche avait disparu et 100% de la douleur. En remontant à mes yeux et dans mon cou jusqu'à ma poitrine. Pour moi, la chirurgie m'a redonné ma vie et cela valait le coup mais j'ai eu d'effets secondaires si ce n'est pas à prendre à la légère. Bonne chance et que vous avez mes prières.

Kaz thank you for your answer.


I'm sorry you could not be made ​​... Yes I've got a tongue in your ear, and chest pain on the side of GPN as nerve pain and then I suffer greatly. I already had these chest pains before taking ZEBINIX 800 for a week I take ZEBINIX 1200, ought it not take effect immediately because I take ZEBINIX for over a year?
Thank you for all your advice. I send you my best thoughts France
:)

Sally vous remercie pour votre réponse.

Vous ne pouvez pas avoir plusieurs décompression du nerf , il est impossible! Cette est une chirurgie qui ne peuvent pas le faire plusieurs fois . C'est la raison pour laquelle j'ai eu un Gamma Kniff pour trijumeau . Pour GPN J'ai eu la chirurgie pa . Comment est votre dernière opération? Est il vraiment dangereux ? Oui, mon sodium est très faible alors je prends ce retour à la sodium et il fonctionne bien . Qu'est-ce que le "MS" ? Sally bientôt , heureux que vous ne souffrent de GPN .



sally said:

J'ai subi une chirurgie à l'Université de Minnesota avec le Dr Stephen Haines pour la décompression du trijumeau et GN / vagal, une intervention chirurgicale, il ya 2 ans et j'ai été sans douleur depuis. Il ya certainement de l'espoir si vous trouvez le bon médecin qui effectue décompressions fréquemment. Je n'ai jamais eu la douleur de poitrine. J'ai eu la douleur de succès avec un combo de tegretal et Trileptal sans aucun problème de mémoire (taux de sodium tombe trop bas cependant). Votre médecin exclu MS? Gardez espoir!. Il existe un remède! Et réponses.

Hi Elli, my chest pain was all on the right side and it did not appear until I was 4 years into this hidious condition. I did have all the tests concerning lung and heart and all of them were negative. I do have MS as do a lot of people with GPN. As for as my surgery it was MVD and I was lucky to have to have a wonderful pain specialist that researched neurosurgeons in the Dallas area and found the best one. This surgeon first did a nerve block on me to confirm it was the gloss nerve. He went through a very long list of what side effects were possible and I decided all of them were better than living the hermit life of pain that I had been living… The effects of the surgery that I had was loosing the hearing in my right ear but that cleared up after 3 months. The worst was loosing the ability to swallow anything but thin liquids and that included pills that I was prescribed. Chicken and beef broth got really boring!!! My surgeon had mr see a speech therapist that helped me retrain my tongue to help push the solids to the back of my mouth. It took a while to get results but after about a month I progressed to cream soup !!! I kept up with the exercises and process was quick after that and now I can eat normally. The surgery was the best thing to ever happen to me. Oh I forgot, I also had a Deep Vein Thombosis which was a blood clot and ended up having vascular surgery. MVD was still worth it. Keep in touch Elli and my main advice to you is to research your doctor very thoroughly.


hi Suzanne,


A big thank you for your answer! The side effects of surgery are important, and it scares me! But if all goes well for you now I'm very happy.
I did not understand, MS, what is it?
A French soon Elle Xs who speaks very little English!
:-)

Elle, MS stands for Multiple Sclerois. It is a disease that affects the central nervous system and symptoms can range from numbness to weakness to pain of just about any place in the body. It is difficult to diagnose because almost any problem you have in your body can be symptoms of something else. An MRI is needed to confirm it and it shows up as White lesions in your brain. I’ve noticed that a great number of people with GPN have MS or have symptoms of MS.

Hi Elle,

I hope you can understand my English?

Yes, acupuncture helped me a lot. It is the only thing that eases and stops mine. If I get a niggle of the pain I have treatment and it stops it. If I do not have the treatment (have learned the hard way) it comes back with terribly.

Suzanne is correct that MS stands for multiple sclerosis. Multiple simply means many, and sclerosis means scarring. So it means multiple scars (lesions) throughout the central nervous system (CNS) which comprises of the brain, spinal cord, and optic nerve (the eye). The CNS controls our whole body system.

MS is an autoimmune disease which means the body's T cells (which is our immune system that acts like an army defending off the bad guys like bacteria, viruses etc) mistakes our myelin sheath (white fatty covering protecting all our nerves in the areas I mentioned) is an enemy. So the T killer cells attack it by mistake trying to kill what it thinks is the enemy and this causes damage.

Yes, it does cause the things Suzanne mentioned like numbness ,weakness, pain. However sometimes the first sign is optic neuritis which is inflammation of the optic nerve so the eye becomes extremely painful and you can lose part of your sight or all of your sight (usually in one eye). This generally comes back after an attack has settled. It also causes just about any problem the body can have:

Issues with balance, issues with speech (slurred), issues with speaking words as in knowing that you want to say and wrong words come out, problems with short term memory, foggy brain, problems with mathematics (suddenly not being able to count numbers etc.). The list goes on and on. Symptoms can be mild to severe, Can come and go or end up permanent. A lot of people may start with having a sensation like their hands have gone to sleep (very common) and a doctor may misdiagnose and tell the person they have carpal tunnel.

However, the one way to tell if it is carpal tunnel or something from the CNS is with MS the whole hand goes numb or to sleep, with carpel tunnel your little finger will not be affected. Also bladder and bowels issues are very common. So things like constant urinary tract infections, constipation, frequency of going etc. Trigeminal neuralgia is extremely common with MS compared to other autoimmune diseases. Fatigue is another very common symptom, as in vertigo (feeling like your head is spinning, or that the world around is spinning) can be common.

With symptoms of MS they can come and go randomly throughout a day, or can be constant. Example you may be able to walk normally in the morning and suddenly you find yourself limping for no reason, then can walk again ok. Numbing and tingling also can be like this coming and going. Then the next day you may be ok, or you may be ok for weeks or months, and then these strange things happen again. Or one can have these symptoms continually for days, weeks, months and then they go away and come back months later etc. Or they can be permanent. But usually by the time they are permanent a person has been diagnosed.

Unfortunately MS is not as easy as just diagnosing with an MRI as there are many diseases that mimic MS. There are a number of tests one must have, and a criteria called The MacDonald Criteria to be measured against. Also people can have many symptoms and not have brain lesions in early stages of the disease as it is inflammation that causes symptoms. Generally a person like this will be montiored over time for their symptoms and have regular testing to see if there are changes. The lesions in the CNS form because of repeated attacks in one or more areas over time.

When one has an autoimmune disease like MS, you cannot have an operation for TN or GPN as it is pointless because there is not a physical reason like there is with Eagles Syndrome (where the styloid processor is larger than normal), or if there is some compression from the artery etc.

BEFORE you can even consider surgery you MUST have scans done. Firstly CT scan of the styloid processors to see if you have Eagles Sydnrome or another obstruction. If that is negative you then need to ask your doctor to run some blood tests : ANA, DNA, ESR, CBC, CRP. These look for signs of inflammation in the body and autoimmune diseases. Other tests your doctor can organise are hearing and balance tests, and the following:

  • Brainstem Auditory Evoked Potentials (BAEP): A series of clicks are played in each ear through headphones.
  • Visual Evoked Potentials (VEP): A series of checkerboard patterns are displayed on a screen.
  • Sensory Evoked Potentials (SEP): Mild electrical shocks are administered to an arm or leg.

These all help to build a profile as to if you have any problems consistent with MS, or whether there is another issue. If something was to show up on these, or the blood tests, then an MRI would be appropriate.

I will find the information I wrote on acupuncture points for GPN on this site and post it on here for you. As you can then copy the details down and take it to someone who specialises in traditional chinese medicine (TCM) for the acupuncture. Seeing a physiotherapist or doctor who do acupuncture will not help (unless they are trained in TCM) as they only do what is called dry needling techniques. They just stick needles into muscles, tendons where they hurt. We call these Ashi points in TCM, we use them however, they are not what is required in regard to treating neuralgia.

Personally Elle before you consider surgery I would strongly recommend you rule out autoimmune disease, only because generally GPN is a stand alone condition when it is caused from an obstruction problem which can be fixed. So please take the time to get some tests and rule out possibilities before opting to have dangerous surgery.

Here are the acupuncture main points I use. A good acupuncturist will know what other points to add. For instance if treating your TN as well will use some points near your ear.

You can also google these points on ying yang house for location and try using acupressure inbetween acupuncture appointments. There also are special tools you can buy for acupressure. Points should be held for around 30 seconds, but no more than one minute at a time. http://www.yinyanghouse.com/acupuncturepoints/locations_theory_and_...

Acupuncture is far better than pumping the body full of drugs that affect the liver terribly and come with other side effects. Over a 1/4 of diseases these days are caused directly from taking a medication ( Iatrogenic ) for another condition. So while you are being treated for one condition you may be creating a whole new disease for yourself. My personal view is I only take things if it is absolutely essential for my well-being, and only stay on them for the duration required.

Acupuncture points

I will give both English version and Chinese. Where I place an * means add moxa (moxibustion, special herb - mugwort - used for heating).

GB 34 -Yang Ling Quan

ST 36 - Zusanli

* REN 6 - Qi HAi

REN 17 - Tanzhong

* SP 6 - Sanyinjiao

GB 20 - Feng Chi (highly recommend this point)

DU 20 - Baihui

LIV 3 - Taichong (This point and the one below form the Four gates which is great for pain)

LI 4 - Hegu (part of four gates)

* KID 3 - Taixi (good for throat pain)

I hope this helps you Elle. With the acupuncture it is good to have it 2-3 times per week if you are having an attack to help ease it quickly. You may want to see if there is a university or college that teaches TCM near you as they generally have a clinic and are not as expensive as a private practitioner. Usually it is 3rd and 4th year students who will do the acupuncture while being supervised by a qualified practitioner.

You get good treatment in these clinics as students want to do well, plus they really like having more difficult cases to work on as generally in the clinics it is people who go for arthritis etc. So having something more interesting is exciting for them and they will do research into the condition and see what other points they may like to use as well as the ones I have mentioned.

Sally, What kind of symptoms had you had prior to surgery?



sally said:

I had surgery at the University on Minnesota with Dr. Stephen Haines for trigeminal and GN/Vagal decompression, one surgery, 2 years ago and have been painfree since. There is definitely hope if you find the right doctor who performs decompressions frequently. I never had chest pain. I had successful pain relief with a combo of tegretal and trileptal with no memory problems(sodium levels dropped too low however). Has your doctor ruled out MS? Keep up hope!. There is a cure! And answers.

Hello Kaz ,
I had an MRI in 2008 doctors have seen a compression of the artery ( vascular loop in the brainstem ) is what is at this point that the doctors told me that I had trigeminal neuralgia and glossopharyngeal neuralgia . I first tried drugs . But no results . So I had a nerve decompression IX. But I still had pain . Then a Gamma Kniff , but I still suffer from trigeminal neuralgia. On MRI no jobs , just nerve compression .
I have not had any operation or radiation for the glossopharyngeal . I still take medication .
15 days since my neurologist changed dosages and I suffer constantly , I have to stay in bed . Suffering is inhumane , neuralgia is not a deadly disease , but it may be because I have a lot of suicidal ideas for the pain stops . It is difficult. I should not tell you this when you are very sick . I'm sorry. But I must say , it is a reality , the people who suffer from neuralgia often think of death .
Thank you for all your information about acupuncture. I'll see in my city it is possible to do. Thank you for your time . You are a very generous person . I must go to bed , I suffer .
See you soon , take care of you Kaz !
The friendly ( I hope you understand my English with Google Translate !)


Kaz said:

Salut Elle, j'espère que vous pouvez comprendre mon anglais?



Oui, l'acupuncture m'a beaucoup aidé. C'est la seule chose qui soulage et arrête la mienne. Si je reçois un bémol de la douleur que j'ai un traitement et il l'arrête. Si je n'ai pas le traitement (ont appris à la dure), il revient avec terriblement. Suzanne est exact que MS est synonyme de sclérose en plaques. Multiple signifie simplement beaucoup, et la sclérose signifie cicatrices. Donc, cela signifie que plusieurs cicatrices (lésions) dans le système nerveux central (SNC) qui comprend le cerveau, la moelle épinière et le nerf optique (l'œil). Le CNS contrôle notre système de corps entier. sclérose en plaques est une maladie auto-immune qui signifie cellules T de l'organisme (ce qui est notre système immunitaire qui agit comme une armée défendant les méchants comme les bactéries, les virus, etc) erreurs notre gaine de myéline (enveloppe graisseuse blanc protégeant tous nos nerfs dans les domaines que j'ai mentionnés) est un ennemi. Ainsi, les cellules T tueuses attaquent par erreur en essayant de tuer ce qu'il pense être l'ennemi et cette cause des dommages. Oui, il ne provoque les choses Suzanne mentionné comme un engourdissement, une faiblesse, des douleurs. Mais parfois le premier signe est la névrite optique qui est une inflammation du nerf optique si l'œil devient extrêmement pénible et vous pouvez perdre une partie de votre vue ou la totalité de votre vue (généralement dans un œil). Cela vient généralement de retour après une attaque s'est installé. Il provoque également n'importe quel problème le corps peut avoir: Problèmes d'équilibre, des problèmes d'élocution (pâteuse), des problèmes avec des paroles comme en sachant que vous voulez dire et mauvais mots sortent, les problèmes de mémoire à court terme, cerveau embrumé, problèmes avec les mathématiques (soudainement ne pas être en mesure de compter le nombre, etc.) La liste s'allonge encore et encore. Les symptômes peuvent être bénins ou graves, peuvent aller et venir ou finissent permanent. Beaucoup de gens peut commencer par avoir une sensation comme leurs mains sont allés dormir (très fréquent) et un médecin peut misdiagnose et dire à la personne qu'ils ont tunnel carpien. Cependant, la seule façon de savoir si c'est du canal carpien ou quelque chose de Le SNC est avec MS toute la main s'engourdit ou dormir, avec canal carpien votre petit doigt ne sera pas affecté. Également les questions de la vessie et des intestins sont très fréquentes. Tant de choses telles que les infections des voies urinaires constants, la constipation, la fréquence des cours, etc névralgie du trijumeau est extrêmement commun avec MS par rapport à d'autres maladies auto-immunes. La fatigue est un symptôme très fréquent, comme dans le vertige (sensation que votre tête tourne, ou que le monde tourne autour) peut être commun. avec les symptômes de la SEP, ils peuvent aller et venir au hasard tout au long de la journée, ou peut être constante. Exemple, vous pourriez être en mesure de marcher normalement dans la matinée et tout à coup vous vous trouvez boiter sans raison, alors peut marcher à nouveau sur OK. Engourdissement et des picotements peuvent également être comme ces allées et venues. Puis, le lendemain vous pouvez être ok, ou vous pouvez être ok pendant des semaines ou des mois, et puis ces choses étranges se produisent à nouveau. Ou on peut avoir ces symptômes continuellement pendant des jours, des semaines, des mois et puis s'en vont et reviennent mois plus tard, etc ou ils peuvent être permanents. Mais le plus souvent au moment où ils sont permanents une personne a été diagnostiquée.











Malheureusement MS n'est pas aussi facile que de diagnostiquer avec une IRM car il ya beaucoup de maladies qui imitent MS. Il ya un certain nombre de tests, il faut avoir, et un critère appelé Les critères de MacDonald à mesurer contre. Aussi les gens peuvent avoir de nombreux symptômes et ne pas avoir de lésions cérébrales dans les premiers stades de la maladie car elle est une inflammation qui provoque des symptômes. En général, une personne comme cela sera montiored au fil du temps pour leurs symptômes et avoir des tests réguliers pour voir s'il ya des changements. Les lésions du SNC former en raison des attaques répétées dans une ou plusieurs régions au fil du temps. Quand on a une maladie auto-immune comme MS, vous ne pouvez pas avoir une opération pour TN ou GPN car il est inutile parce qu'il n'y a pas une raison physique comme il est avec le syndrome Eagles (où le processeur styloid est plus grande que la normale), ou s'il ya une compression de l'artère etc AVANT vous pouvez même envisager la chirurgie, vous DEVEZ avoir scans fait. Tout d'abord CT scan des processeurs styloïdes pour voir si vous avez Eagles Sydnrome ou un autre obstacle. Si c'est négatif, vous devez alors demander à votre médecin de faire des tests sanguins: ANA, ADN, ESR, CBC, la CRP. Celles-ci ressemblent à des signes d'inflammation dans le corps et les maladies auto-immunes. D'autres tests votre médecin peut organiser des tests d'audition et de l'équilibre, et ce qui suit:



  • Potentiels évoqués auditifs (PEA): Une série de clics sont joués dans chaque oreille à travers les écouteurs.
  • Potentiels évoqués visuels (PEV): une série de motifs en damier sont affichés sur un écran.
  • Potentiels évoqués sensoriels (SEP): chocs électriques légers sont administrés à un bras ou une jambe.

Tous ces éléments contribuent à créer un profil quant à savoir si vous avez des problèmes compatibles avec MS, ou s'il ya une autre question. Si quelque chose devait apparaître sur ceux-ci, ou les analyses de sang, puis une IRM serait approprié. Je vais trouver l'information que j'ai écrit sur ​​les points d'acupuncture pour GPN sur ce site et l'afficher sur ici pour vous. Comme vous pouvez alors copier les informations vers le bas et le prendre à quelqu'un qui se spécialise dans la médecine traditionnelle chinoise (MTC) pour l'acupuncture. Voyant un kinésithérapeute ou un médecin qui ne va pas aider l'acupuncture (sauf s'ils sont formés en médecine traditionnelle chinoise), car ils ne font que ce que l'on appelle les techniques d'aiguilles sèches. Ils ont juste coller des aiguilles dans les muscles, les tendons, où ils font mal. Nous appelons ces points Ashi en MTC, nous les utilisons cependant, ils ne sont pas ce qui est nécessaire en ce qui concerne le traitement des névralgies. Personnellement Elle avant d'envisager la chirurgie je vous recommande fortement éliminer une maladie auto-immune, seulement parce que généralement GPN est un stand alone état quand il est amené à partir d'un problème d'obstruction pouvant être fixée. Alors s'il vous plaît prendre le temps de faire quelques tests et écarter les possibilités avant d'opter pour une chirurgie dangereuse.



Hi Elle, Yes I could understand your message :-) I understand completely about the suicide thoughts as I have been there with this too. That was when acupuncture saved me. It saved my life!! I would urge you to try acupuncture. You would need it minimum twice a week.

Look for a university or a college that teaches traditional chinese medicine in your country. Hopefully one will be close. They have clinics and do not charge as much money as private practitioners.

Sometimes the anti-epileptic medication can actually make the neuralgia worse. So if yours has gotten worse since increasing the dose, maybe speak to your neurologist or pharmacist, or even doctor about decreasing the dosage to see if symptoms lessen a bit. If they do you will know the drug is not right for you and actually making it worse.

If I lived in France I would come and do acupuncture for you. But I live in Australia. GPN is by far the worst pain anyone can suffer, I believe. I hope tomorrow is a better day. But please do not give up hope! You must try acupuncture to see if it can help you.

elle,

yes the suffering is inhumane.

we seem to have a lot in common. My gpn started in 08 and I've had MVD (10th nerve decompressed) and gamma knife. Neither worked.

i have pain in chest occasionally. i have no doubt it's related to gpn.

i spend most of my life lying down.

i'm so sorry for your pain.

i wish i had something to offer - coping strategy or procedure.

it sucks doesn't it.

Hi every one. As I set here in Texas I almost feel guilty because I’m so much better than 3 years ago. Before my MVD I had 7 years of the pure hell that Elle spoke about. And yes suicide thoughts were in my thoughts all the time. My children are the only things that kept me from it. With me it finally meant finding a doctor that wouldn"t give up on me. He made me have one of those horrible EEG’s that you have 26 wires glued to your head for 4 days at home and video cameras set up everywhere to watch you. They did find that the left side of my brain was seizing. He put me on Gabapentine and it almost immediately helped a lot of my symptoms. Before the EEG I had been vomiting for 2 straight years, I had very bad tremors in both hands, my legs from knees down ached very bad all the time, and then, of course, was hated fried that was always with me GPN. As bad as I was it’s a myrical I remained alive. Then that very special doctor found me the right surgeon for the MVD. He did a nerve block on me before the surgery. It was a very very long road but I now have my life back. Elle if you were here I would send you to this very special doctor. Praying for you every day.