So was doing really well on Tegretol until my pharmacy messed up my doseage, I didn't notice and was on half the amount I should have been for 3 weeks. That was June, it's now September and the throat pain has only gone back down to the 3/10 it was before June. What I'm struggling with are the dehibilitating HEADACHES I'm having pretty much every time I take a 400mg Tegretol. So someone suggested recently that I try acupuncture for the throat pain as well as the headaches.
Thoughts?
Hope you are all well and having "pain-free days".
Yes, acupuncture is what I manage my GPN with!! I'm actually studying it now and do it to myself. I started having a few twinges over the last few weeks, and nearly fell of my perch at the intensity as I though the last severe attack I had was the worse it could throw at me. But mother nature has a cruel sense of humour as she upped the anty. I did acupuncture on myself (not recommended unless you are trained in this field so see a professional TCM practitioner) and after the first treatment reduced significantly and after the second gone ;-) I have written a number of posts on this forum in regards to acupuncture, also recommended a few points. So maybe have a search and see if you can find those.
Acupuncture has a good success rate with all types of neuralgia's. It works on trigger points as well as other points to do with meridians. You need to understand these concepts to get how it would work.
It depends on the condition you are treating where the needles go. You also need to understand the human body and physiology to grasp an understanding. In acupuncture certain conditions can be treated at the opposite end of the body, which to someone with no knowledge may appear weird but it works. Other conditions can be treated close to or on the area of concern.
With GPN there are scalp points, neck points and other points in the body that are used. The ones on the scalp and back of neck the most influential. Acupuncture seems to be a potent stimulus for activating the analgesic systems in the body. In China they actually perform surgery using acupuncture rather than using anaesthetic in some cases.
There are now numerous studies and also there have been clinical trials in acupuncture for pain relief showing favourable outcomes. In fact, I read a few years ago that in the US acupuncture has now been approved as a method of treating pain for breast cancer. http://www.breastcancer.org/treatment/comp_med/types/acupuncture.jsp
Acupuncture analgesia is the result of physiological and neuropharmacological processes induced by afferent inputs excited by acupuncture, and the participation of various endogenous opioids and their receptors in EAA has been widely accepted. Various nuclei and neural networks also participate in the induction of acupuncture analgesia. There are several endogenous pain inhibitory systems in the CNS, and various afferent inputs activate the systems. Acupuncture is one of the most useful procedures for activating these systems and relieving pain.
Recent archaeological investigation has demonstrated that the essential role of moxibustion therapy is recognised in establishing Chinese meridian theory. Therefore, the important role of the polymodal receptors, responsive to both acupuncture and moxibustion, is the focus of this review. The morphological and functional characteristics of polymodal receptors can explain the nature of so-called acupuncture points and trigger points. Immediate effects of acupuncture and moxibustion may be explained, at least in part, by the axon reflex via the polymodal receptor. The polymodal receptor appears to have a role in the mechanism of acupuncture and moxibustion, and to relate to so-called acupuncture points, tender points and trigger points and the activation of the endogenous pain inhibitory systems.
====
I hope some of this helps a little to understand. It basically works on pain receptors and as mentioned before you need to understand and appreciate Chinese medicine and also under human anatomy and physiology if you want to truly get it. But most people just go with the fact they try it and it works for them and don't look for an explanation. It's a bit like general anaesthetic that no-one understands how or why it works, it just does... Acupuncture is a bit the same in some ways because some people don't get the concept of it, or don't buy into the terms such as meridians, qi etc because we have been brought up believing other systems, but once they try it and get good results they just know it works.
I have a physicain in Fort Worth who experimented with my GPN until we found the proper stimulation that has relieved my pain for long periods of time.
Hi Roland, would love to know what points your physician uses so I can compare with what I use on myself. Acupuncture was the ONLY thing that worked for me. What we have to remember is that nothing out there can cure this. The longer you have been experiencing pain, the longer it may take to get it under control. Then maintaining that is the key. I do regulat acupuncture on myself for other symptoms with my MS and once the GPN niggles I nib it in the bud straight away rather than allowing it worsen.
More people need to be open to acupuncture and not just think that meds or surgery are the only answer. They also have to bear in mind that it is not always the case of one or two treatments to get it under control. They need to give it a decent try and have it every few days in the first instance to get it under control. It may not work for everyone but it is worth a serious attempt. It is less invasive than surgery and doesn't carry the nasty side effects of the medications. Also people need to bear in mind some meds can actually amplify the pain - I found this when I tried neurontin. I'm not on any meds now. My neuro is fine with that as he witnessed how chronic and severe my GPN was and that nothing he threw at it worked. Even had 3 days of IV steroids the first bad attack and it worsened it due to the taste of the steroid which you can't control when it's IV. I just had to ride out massive unbearable continuous waves of pain...
My neuro actually notes how well the acupuncture works on his correspondence with my GP and other specialists ;-) He's not afraid to mention it as treatment that has worked for me, whereas there are many specialists, even if they believed it could work, would actually openly declare this as possible treatment...
Yes.....The hospital even brought an acupuncturist in after my MVD surgery. My mastoid bone got broke & it filled with CSF. I had awful Motion Sickness. The acupuncturist helped immensely. My daughter also saw one for a year & was very pleased. Tegretol didn't really do anything for me. I hope you feel better soon.
Personally I am not a huge fan of auricular acupuncture because you need to be very precise in where needles are placed and need to be very experienced in my opinion. I have had seeds put into my ears and they have caused more issues, BUT it does depend as sometimes things can excerbate slightly before easing.
I much prefer body points and scalp points for TGN. The last few days I have had bouts of trigeminal neuralgia - yep GPN isn't partying on it own in this body, it has some party hard mates. This is the result of having MS and Sjogren's competing for who is top dog in my body.
Anyway, I had one of my acupuncture classes on yesterday and I was in a lot of pain and couldn't talk as my jaw bone, mastoid bone and ear were in burning pain. I asked my instructor to do what points she thought would be good for that while another study was practising some other facial points on me for headaches and sinus. She put a needle in to a place I haven't learnt yet (but will actually be learing in nexts weeks class). It really amplified the pain terribly and yet it was nowhere near the pain. She asked if I could please try to ride it out as it will dissipate and if it doesn't she'd take it out. It took about 15 mins for the pain to begin to subside, and at around 30-40 mins pain was gone and I haven't had another twinge. So now I have a point that I can needle myself for that one when it niggles but now know to expect it may amplify the pain for a short while. It acts a little like a TENS machine stimulating the nerve in order to calm it down to allow it to heal.
But back to the aricular. I guess all you can do is try another round. Do you know why they chose to do aricular versus body and scalp points? I placed a list on this forum somewhere of the main points I use for GPN. Every person is slightly different the way they present with pain, but mine was severe and chronic up until I found acupuncture. Also when it is severe you need to have acupuncture approx. every 2-3 days to really tackle it. Then later can drop to once per week, then later once per month. I'm now on a do it when I first notice any niggles and repeat the treatment the next day (for me that's easy because I can do it to myself but for others they would need to see someone in 2-3 days).
@Tracy, that is great the acupuncture workd for you. The trick is finding someone who is traditionally trained in Chinese medicine.
I just looked up my post on points. Since I wrote this I can now actually do acupuncture myself on them.
I have now been months without treatment, but I know my points now and use acupressure myself regularly, which is something you can learn to do yourself once you know the points that work for you ;-) I will give both English version and Chinese. Where I place an * means add moxa (moxibustion, special herb - mugwort - used for heating).
Unfortuantely the scalp points are a bit harder for me to explain at the moment, BUT i would suggest that you can try seeing a Chinese massage therapist that does acupupressure and get the head and shoulders done. That way they can address the scalp points. Another option is to write down the english and chinese names of the points and take those to the chinese massage therapist and ask them to also work on those points and the scalp for terrible pain in the throat and tongue. This could be a really good option for those who do not like needles. But I cannot state whether this would be as beneficial as acupuncture in the first instance.
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 *
KID 3 - Taixi (good for throat pain)
Please let me know if any of you try these points and do it regularly and how you go.
Tbh, the acupuncturist has never treated GPN before only TGN so the auricular thing may be experimental on his part. The pain has been horrendous since whereas before it was just about bearable. I see him again next Thurs which I will ask him to not do auricular but try scalp and neck instead. I haven't had pain in the tongue before - until now!! But you're right, I have to give it another round to see what happens.
I'll report back on Thurs! And I've printed your points and going to take them into him!
The joys of the tongue pain!!! My GPN, when at its worse, attacks the throat and tongue. The worst attack I had, prior to acupuncture, was so severe as the pain was coming every 3-5 mins on its own and also being triggered by things like attempting to eat, general swallowing etc. I was like that for many many months and actually was to the point of considering suicide as I was told by the hospital there is nothing more we can do for you!! and just could not go on like this... acupuncture saved me!
It was affecting my heart and breathing as well. It literally felt like I had a charger like a TENS machine attached to several distinct points on my tongue and cranked up to the highest level. My tongue actually felt as if it was convulsing and then actually felt like it was smoking and bleeding as the sensation would die down before the next round. The throat was also doing its own thing. GPN is cruel...
Do you suffer from a dry mouth at all, or the sensation that your tongue is dry even if you drink water. I don't know where you live but what I have personally found is the drier the weather the worse the GPN is. When the weather is humid it isn't as bad. Even now my little niggles occur once there is no humidity in the air. I'm basically a human humidity gauge. If you do have a dry tongue, or complete dry mouth, try and keep it moist. I use many items from the Biotene line which really help me, BUT haven't used these during attacks, as only started using them after my last doozy and since the acupuncture have only had minor attacks in comparison where it begins to niggle and I nip it in the bud.
I also carry with me Difflam Forte throat spray and if my throat does start playing up will give it a quick spray to deaden it until I can do some acupuncture on myself. It just deadens it a little when it's not a full blown attack (niggles) or if I have the burning feeling instead of electric shocks.
I also use a vaporiser machine in the drier weather, next to my bed, of a night time to put moisture back into the air. This does help. I also use saline nasal sprays to get moisture down the back of my throat as my throat is also very dry and gets easily agitated when there's no humidity and causes me to clear my throat which is not good when you have GPN :-( so I use saline and also use FESS nasal gel which really helps a lot. For me the attacks come when they want but basically I have also found triggers; dry air and weather, certain foods and flavours, certain drinks etc.
Anyway, look forward to hearing how you go with these points on Thurs. There is one scalp point on that list DU20. It will feel sensitive when they do it but it is worth it ;-) A few of the other points will feel like dull aches, especially the points on the hands and feet. Around the ankle can either feel dull ache or slightly tingling depending on which points are used. This is the sensation you need to feel. If you don't get this sensation they need to obtain it by manipulating the needles. The only way I can describe it is that it feels like a dull ache like a thorn is in there, but this dissipates after a little while but the important thing is you feel that to begin with.
Some of the other points you may feel a slight tingle. Eg: ST36 in the upper part of the lower leg, you get a nice slight tingling feeling down in your feet and toes - this is what you are meant to feel. If it feels too strong you can ask for them to reduce it a little.
The important thing is that you should not feel sharpness when the needle is in. With some practitioners you can feel a little sharpness upon entry of the skin, but with most we are trained to be quick to get it through the sensitive layers so that you don't feel that side, but once in you shouldn't have any sharp sensation. If it is they need to either remove the needle and do it again or adjust the needle.
Really interesting discussion, Kaz and Granadam. Kaz, if you have recommendations on how to select a well-trained acupuncturist, that would be great. Is there some sort of certification or membership in a particular society that we should look for?
I am not sure of how your system works in the USA, as I am in Australia. In Australia we now must have national registration which requires we have completed a degree that is outlined under the registration and continue to do professional education each year like doctors.
Ensure you see a Tradtional Chinese Medicine trained acupuncturist, NOT a dry needling practitioner like a physio or chiropractor or doctor. Dry needling is totally different to proper traditional acupuncture. It has its place for some muscolskeletal issues but will not be beneficial for GPN as they just use sore spots to put needles in. In TCM this is called Ashi points. But for true acupuncture you need to know exact point location, and combination points for which part of the body.
I would call these people and ask about this for your state as I believe you may have different laws in each state. It is a toll free number. http://www.aaaomonline.org/
Here is a link to a documentary of acupuncture well worth watching, and watching to the end as you will see how a group of scientists and medical practitioners put it to the test using MRI technology. http://www.youtube.com/watch?v=41vm87qq1KU
24