Non pharmaceutical relief

Hi guys,

I've always enjoyed hiking and walking but I've even become a more avid participant as a result of the GPN relief I get from it. I'll walk or hike up to 3 or 4 times a day for up to a total of 4 hours or more. I do the occasional hike that, on it's own, is well over 4 hours. My symptoms usually return within half an hour of stopping, but it's nice while it lasts. To get relief I usually need to go at a fairly good pace and get a certain degree of jarring happening. If it's too leisurely a walk it doesn't help. Has anyone else experienced any relief from walking/hiking.

Another one that works for me is ice cold beverages and milkshakes. I just need to swallow to my GPN side and kind of hold the icy cold beverage there for a moment before I let it go down. After a few swallows like that it will usually stay in relief until I finsih the beverage.

Any other non pharmaceutical things that any of you have discovered that gives you some degree of relief from your condition?

Take care.

Ron

i was told to drink tonic water twice a day but i dont know if it helped or i just went in to remission. but yes also hot beverages work for me. as far as hiking/walking i am too tired on the meds to do much of it! lol

There’s a lot of TN guys, that apparently have found relief by following a 0% saturated fat diet, ( I think that in itself would kill me given my current diet, I’d starve) but I don’t know if it would help us too?
I had a copy sent to me recently and I’ve not read it through yet, but you never know eh?
At a guess It may help the primary guys, but apparently they’re not sure why it works for TN so it may well help us too, I would doubt it would do anything for those of us who have secondary GPN though, but that’s just surmising.

That’s just nutso cuckoo talk.



Grace Mackay said:
There's a lot of TN guys, that apparently have found relief by following a 0% saturated fat diet, ( I think that in itself would kill me given my current diet, I'd starve) but I don't know if it would help us too?
I had a copy sent to me recently and I've not read it through yet, but you never know eh?
At a guess It may help the primary guys, but apparently they're not sure why it works for TN so it may well help us too, I would doubt it would do anything for those of us who have secondary GPN though, but that's just surmising.

Ha ha ha, I’m so glad you think so to!

Placebo more than anything maybe, but I figured since it’s one that folk rave about for, and note the “apparently” for fixing head nerve pain, there was no harm in mentioning it here too. Take from it what you will. :o) It’s certainly one of the weirder things I’ve heard for neuralgia, chiropractic, and acupuncture I can understand to a degree, but not so much this.

Not unless we’ve got chunky furry/crispy fatty cartoids pounding away our G nerves!.x x x

On really bad days I couldn’t do much of anything, but if the pain were moderate, I enjoyed hiking, fly fishing, reading. Anything to not dwell on the pain. Coffee or chamomille tea worked well. Nothing cold.

Really, the only pharmaceutical that helped was a puff of MJ. I believe that it worked because it was instantaneous. But, sitting around stoned all day isn’t quality of life. Well, not since college, anyways.

The hot stuff helps me too when I get normal attacks, tea usually, but I don’t get it in my throat, I don’t think I could handle anything in my throat without choking if that was the case!!! When I get the really big attacks, there’s not a damn thing I can do about that unfortunatley. I’ve not tried the MJ for this, I used it for shoulder pain years ago with good success, but the paranoia on top of the teg brain fog probably wouldn’t be worth it for me I’m afraid, but then again, due to the amount of prescription meds that are rattling about my system now and the fact that the teg is prescribed for schizophrenia, it probably wouldn’t bother me, got enough other stuff in the bloodstream to counteract it now!!! :o)

We’re famous for our MJ here. When we were in Amsterdam a few years back, we went into a coffee shop to check it out and my daughter was looking in their display case and she all of a sudden gets real excited and says "Dad, Dad, look, they have Texada TimeWarp. A little tip if you are using it therapeutically, you can ease the paranoia type symptoms by popping a lorazepam (ativan).
Ron



Grace Mackay said:
The hot stuff helps me too when I get normal attacks, tea usually, but I don't get it in my throat, I don't think I could handle anything in my throat without choking if that was the case!!! When I get the really big attacks, there's not a damn thing I can do about that unfortunatley. I've not tried the MJ for this, I used it for shoulder pain years ago with good success, but the paranoia on top of the teg brain fog probably wouldn't be worth it for me I'm afraid, but then again, due to the amount of prescription meds that are rattling about my system now and the fact that the teg is prescribed for schizophrenia, it probably wouldn't bother me, got enough other stuff in the bloodstream to counteract it now!!! :o)

Ron…

And I thought it was my imagination. I too noticed a good rigid hike helps me!

Hey Randy, ya I don’t know whether the jarring kind of numbs the nerve or if the movement helps to take the pressure of the carotid off of the nerve but it works well for me too. I live in a great hiking location so I’ve done a lot of exploring, met some bears, deer, elk and not long ago a skunk which my dog was very curious of. Luckily we got away without getting sprayed.
Good hiking.
Ron



Randy Vawter said:
Ron...

And I thought it was my imagination. I too noticed a good rigid hike helps me!

You guys are lucky you can even drink on a big attack. I can't do that :-( Any of the slighest attempt at swallowing and the big spasms roll on out. I get mine in the throat and part of the tongue and the pain comes every 3-5 minutes on my big attacks and last 4-5 months... It is totally relentless to say the least. Large dose IV steroids did jack for me too!!

The only thing that helps me is acupuncture. I have been classed as a severe case of GPN and have had emergency doctors, neurologists etc even throw their hands up and say there's nothing more we can do. I hate injections or needles of any kind but after much research found acupuncture approx. 4 years ago. It has been my saviour as I was to the point of I could no longer live this way. It was either going to kill me (as it was literally stopping my heart from the sheer intensity of the pain so was being monitored closely) or me kill myself because I could get NO relief whatsoever. Each big attack was also getting worse. It took me many months to learn to eat again, but there are certain things I have to avoid as they instantly trigger the pain eg; cordials.

You can read a little more about my story on my profile. My mum, neurologist, other friends and family could not believe how the acupuncture worked. They were basically all gobsmacked. I use this to keep it under control and personally am studying it now so I can treat myself and help others ;-)

Hiking is out of the question for me Ron. Have MS and very little energy. Actually after each big attack I've had of GPN it has depleted my energy further that I never regain back. I used to however love trekking. Trekked in Nepal for a month which I loved. So many other places I wanted to trek but can only dream about that now.

Would love to know if there's anyone else with MS and GPN?

I tried acupuncture with more than one acupuncturist and didn't have luck so I'm glad to hear that it has provided you relief. As for swallowing liquids, I would definitely get major spasm/shock pain, but if it was extremely cold liquid and I did my best to keep it to my affected side it would often cease the pain. Of course I'd have to keep sipping freezing liquid to that side. Today I am one year post surgery and have luckily been pain free ever since.

Hope the best for all!

1 Like

Thanks for replying Ron :-)

I read that in another post on another Ron's post, and very interested to hear about the surgery. With the acupuncture I was extremely lucky that I got someone who specialised in the central nervous system and was looking at it more from a western perception, rather than chinese perception. He had done his doctorate for acupuncture on stroke victims. He had also undergone further trained in France under a renowned scalp acupuncturist. So I had quite a number of scalp points done which helped immensely. He really kne what he was doing. I also had issues with my speech being slowed from the MS and also motor skills which he also addressed and my speech went back to normal.

As mentioned my neuro and other neuro's I have seen for further opinions are blown away with what it has done for me. So I can't praise it enough. I'm even studying it now part-time so I can treat myself and help others as the central nervous system is a specialised field and you need to ensure your acupuncturist understands neuralgia to begin with. I also wouldn't recommend having it done under a GP as medical doctor's learn to do what's called dry acupuncture which is only addressing the sore spots and not actual channels in the body. There is a difference here when it comes to treating neuralgia.

My cardiologist has witnessed first-hand open heart surgery via acupuncture with no anaesthetic. I also watched recently a documentary where people in China were having all sorts of plastic surgery with only acupuncture as the means of anaesthetic - amazing!! I think it really does depend on the person who uis administering it, and also it definitely does depend on how regularly you have it to begin with. Also too each persons body is different.

What works for one, may not always work for someone else but if one is going to attempt acupuncture for this neuralgia or any other neuralgia, especially if severe, they need to have it a few times approx. 2 days apart for the first week to two weeks to completely settle it down. Then have maintainence treatments depending on how severe it was to begin with ;-) It's a bit like taking a drug that takes a few days or weeks before it works fully. One has to give things time to see if they work. Not saying that you didn't do this as it sounds from your reply you sought out a few different people. But moreso saying some people may go once and then say that didn't work as they expect a miracle in one visit. If only we could find that one miracle that easily.

Accupuncture sounds interesting Kaz, did you have to find someone that specialises in neuralogical issues? And where did they put the needles? I'm interested in trying it but wasn't sure if it was useful or not.

Ron you are an inspiration with your walking and healthy living, I wish I had the energy for it. Maybe after suffering from a longer time my body will adjust and can go back to being healthier! :(

Hello Kaz,

Thanks for posting on the website.

I was searching around for acupuncture treatment for GPN on google and found various blogs, comments on acupuncture. From the search I did found that the acupuncture points and its location are more important, as if you do at wrong location/points, it wont be useful.

Reading your posts, I understand you are learning Acupuncture. Can you tell the points/locations on which acupuncture needles were inserted, that might be useful to many peoples around the world suffering from GPN.

Regards,

Rachit.

Kaz said:

Thanks for replying Ron :-)

I read that in another post on another Ron's post, and very interested to hear about the surgery. With the acupuncture I was extremely lucky that I got someone who specialised in the central nervous system and was looking at it more from a western perception, rather than chinese perception. He had done his doctorate for acupuncture on stroke victims. He had also undergone further trained in France under a renowned scalp acupuncturist. So I had quite a number of scalp points done which helped immensely. He really kne what he was doing. I also had issues with my speech being slowed from the MS and also motor skills which he also addressed and my speech went back to normal.

As mentioned my neuro and other neuro's I have seen for further opinions are blown away with what it has done for me. So I can't praise it enough. I'm even studying it now part-time so I can treat myself and help others as the central nervous system is a specialised field and you need to ensure your acupuncturist understands neuralgia to begin with. I also wouldn't recommend having it done under a GP as medical doctor's learn to do what's called dry acupuncture which is only addressing the sore spots and not actual channels in the body. There is a difference here when it comes to treating neuralgia.

My cardiologist has witnessed first-hand open heart surgery via acupuncture with no anaesthetic. I also watched recently a documentary where people in China were having all sorts of plastic surgery with only acupuncture as the means of anaesthetic - amazing!! I think it really does depend on the person who uis administering it, and also it definitely does depend on how regularly you have it to begin with. Also too each persons body is different.

What works for one, may not always work for someone else but if one is going to attempt acupuncture for this neuralgia or any other neuralgia, especially if severe, they need to have it a few times approx. 2 days apart for the first week to two weeks to completely settle it down. Then have maintainence treatments depending on how severe it was to begin with ;-) It's a bit like taking a drug that takes a few days or weeks before it works fully. One has to give things time to see if they work. Not saying that you didn't do this as it sounds from your reply you sought out a few different people. But moreso saying some people may go once and then say that didn't work as they expect a miracle in one visit. If only we could find that one miracle that easily.

Hi Rachit, I have received a number of messages yesterday and yours today. Sorry for the delay and I will post shortly about the acupuncture. I'm just right in the middle of my exams at the moment so need to concentrate on those, then can sit down and write a decent reply with points etc; for all on here ;-)

Kaz

Thanks Kaz for your quick reply and all the best for your exams.

Will wait desperately for your reply on acupuncture.

Regards


Kaz said:

Hi Rachit, I have received a number of messages yesterday and yours today. Sorry for the delay and I will post shortly about the acupuncture. I'm just right in the middle of my exams at the moment so need to concentrate on those, then can sit down and write a decent reply with points etc; for all on here ;-)

Kaz

Hi all, sorry for the long awaited reply. Life has been a tad crazy with exams last year, then xmas and then my MS playing up. Here are some acupuncture points for you to try for the GPN. These are the ones that I remember I was having regularly but will check when I start back at clinic early Feb for any other additional points, and/or original points that were used on me back when the GPN was at its worse in case there were others. But think I've covered most of them here.

These are good starting points for those who want to try it. You will need to find someone who has studied Traditional Chinese Medicine for acupuncture. Not a medical professional who has just done what's called a 'dry needling' course. As they only learn ashi points, which simply means sore spots. These are fine but will not help to calm the central nervous system down. You need to use actual points on meridians to do that, and if done correctly can have a profound effect. I am living proof of that.

You will need to have it possibly every second day to begin with if you are classed as severe. Usually after the forst few sessions close together you will start to get relief. If you just have a niggling case of GPN twice a week to begin with until you get it under control. Then once you note an improvement go weekly for quite a while until you feel the GPN is not there, and then change to once a fortnight and see how that goes. You'll need to find the right amount of time for yourselves for your maintainence dose as this is not a cure, but a way of managing it without drugs. The longer and more consistent your treatment, the longer you'll be able to go inbetween treatments. Then if for some reason it niggles a bit, you knock it on the head with a few sessions close together again. 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).

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. The key is you MUST do it regularly to begin with. GPN is a chronic condition and therefore needs to be treated aggressively to get it under control. If you only go once or twice, this will not be enough for you to really know. Consistency with a good practitioner will help. Also too, some practitioners may want to add some other points. This is fine but try to start with the ones I have mentioned first.

I'm about to start back at uni so will be flat out again but will keep my eye out for any posts in regards to acupuncture, and as mentioned when I start back working in the clinic (yes, this year I actually start learning to administer the needles myself and I cannot wait as I want to be able to help others relieve pain), I will check my own records to see if there are some additonal points I missed as it was quite a few years ago that I first had this done.

Kaz



Thanks Kaz for providing acupuncture points. Can you also provide some images showing the exact location for the same.

Regards,



Kaz said:

Hi all, sorry for the long awaited reply. Life has been a tad crazy with exams last year, then xmas and then my MS playing up. Here are some acupuncture points for you to try for the GPN. These are the ones that I remember I was having regularly but will check when I start back at clinic early Feb for any other additional points, and/or original points that were used on me back when the GPN was at its worse in case there were others. But think I've covered most of them here.

These are good starting points for those who want to try it. You will need to find someone who has studied Traditional Chinese Medicine for acupuncture. Not a medical professional who has just done what's called a 'dry needling' course. As they only learn ashi points, which simply means sore spots. These are fine but will not help to calm the central nervous system down. You need to use actual points on meridians to do that, and if done correctly can have a profound effect. I am living proof of that.

You will need to have it possibly every second day to begin with if you are classed as severe. Usually after the forst few sessions close together you will start to get relief. If you just have a niggling case of GPN twice a week to begin with until you get it under control. Then once you note an improvement go weekly for quite a while until you feel the GPN is not there, and then change to once a fortnight and see how that goes. You'll need to find the right amount of time for yourselves for your maintainence dose as this is not a cure, but a way of managing it without drugs. The longer and more consistent your treatment, the longer you'll be able to go inbetween treatments. Then if for some reason it niggles a bit, you knock it on the head with a few sessions close together again. 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).

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. The key is you MUST do it regularly to begin with. GPN is a chronic condition and therefore needs to be treated aggressively to get it under control. If you only go once or twice, this will not be enough for you to really know. Consistency with a good practitioner will help. Also too, some practitioners may want to add some other points. This is fine but try to start with the ones I have mentioned first.

I'm about to start back at uni so will be flat out again but will keep my eye out for any posts in regards to acupuncture, and as mentioned when I start back working in the clinic (yes, this year I actually start learning to administer the needles myself and I cannot wait as I want to be able to help others relieve pain), I will check my own records to see if there are some additonal points I missed as it was quite a few years ago that I first had this done.

Kaz



HI Friend,

It is not possible for me to place images of all these points because of time constraints. If you are interested in looking at locations you can google the english name plus the word location next to it. BUT I should stress that acupuncture needs to be done only by someone who is professionally trained in this area because there are many nerves, blood supplies etc, and you also need to know all muscles locations, safe depth and positioning of needles etc. So only a professional should be administering such treatment unless you are taught yourself by a professional.

Acupressure is okay to do if you also understand the exact locations and personally I suggest acupuncture first and then learn from the acupuncturist the exact location point by point to attempt acupressure at home inbetween visits as using a wrong location may well interfere with what you are trying to achieve.

Also too, if you look at locations you may wonder how points in certain places could have any bearing on pain in other areas, but it is all do to with channels, meridians and understanding the flow of these through the body. Our body is a complete highway of nerves that are constantly relaying messages to and from the brain, so in order to really understand this you need to firstly understand human anatomy and physiology along with Chinese medicine theory and application. Certain points work in unison with other areas.

Here is an example of what you can find by googling GB34 location:

http://www.yinyanghouse.com/acupuncturepoints/gb34

http://www.acupuncture.com/education/points/gallbladder/gb34.htm