New member looking for pain and nutrition tips for type 2 pain

General General TN & GPN (Old Site)
21

Sorry things have been so horrible for you lately.

Lots of good suggestions from others but thought I'd throw in a few things that are working for me. I think that being in pain can be so consuming that sometimes it is easy to let things like good nutrition slide into the background.

Over the last 6 months I made a commitment to myself that I would nurture myself with the food choices I was making, I guess I just came to the realisation that my body needed me to give it a little more attention. I eat a plant based diet and don't have any animal products but the follow ideas could be easily adapted to any type of diet.

I make a green juice every morning with various combinations of spinach, cos (romaine) lettuce, silverbeat, spinach, various kinds of kale, parsley, bok choy, endive, broccoli etc. I often throw in an apples or orange and the juice of a lime or lemon. There are lots of juicing options and overtime i have been able to reduce the fruit and increase the greens.

I also have a high speed blender and do a couple of different smoothies throughout the day. I make mine with water but you could easily add in some type of nut milk or dairy if you consume it. My smoothies tend have more fruit in them but i still have some type of green leafy vegetable and a cucumber. Any seasonal fruit can work in s smoothie and i keep a supply of frozen berries, mangoes, pineapple etc in case my fresh supplies are running low.

Some of the extra add ins in my smoothies include, chia seeds, maca powder, sunflower seeds, pumpkin seeds, flax seeds and a pea protein powder. The options are endless and you could add in some nuts or coconut milk if you needed the extra calories.

I also make lots of veggie soups and add in some lentils or other legumes if i am really hungry and then blitz the whole thing up so it is smooth. The other thing that I do is to make sure I have something in the freezer for days when I am busy or just can't be bothered to make something fresh. You can freeze juice, smoothies and soups in individual size portions and I defrost them in the fridge.

I do feel better when i eat better but it can be so hard sometimes........I just do the best I can.

I work with a personal trainer 3 times a week and he works with a lot of clients that have multiple health issues so he has been excellent at making accommodations for me when I am in pain. Once a week I work with a physical therapist and she has been working on my neck and skull and I am learning how to relax the muscles I tense when I am in pain.

I also meditate on a daily basis and it has helped me to stay less stressed as I am a worrier by nature.

Sending you a big healing hug.

Trish

22


http://bfe.org/new/try-our-breath-pacer-ez-air-plus/

I'm working with a certified biofeedback counselor. For 30 days this a free app

that will work on a pc. She thinks highly of this app, as well as the sponsoring company.

I've loaded it and will consider it as a less expensive alternative to pricey devices.

The supposed benefit of going to a counselor is using other equipment to identify optimum breaths per minute where heart rate variability is one of the key metrics. I do know breathing/meditation helps but I do not have a clue if the bells and whistles of "biofeedback" or any more effective than traditional eastern inspired meditation protocols. For me, I just like the visuals as a crutch.

For apple users...another biofeedback therapist likes

http://www.t2.health.mil/apps/breathe2relax

Breathing techniques is the one tool that has the most promise of mitigating pain, though there's no total escape.

Of course, just my opinion. Type 2 pain seems very resistant to treatment.


Trish said:

Sorry things have been so horrible for you lately.

Lots of good suggestions from others but thought I'd throw in a few things that are working for me. I think that being in pain can be so consuming that sometimes it is easy to let things like good nutrition slide into the background.

Over the last 6 months I made a commitment to myself that I would nurture myself with the food choices I was making, I guess I just came to the realisation that my body needed me to give it a little more attention. I eat a plant based diet and don't have any animal products but the follow ideas could be easily adapted to any type of diet.

I make a green juice every morning with various combinations of spinach, cos (romaine) lettuce, silverbeat, spinach, various kinds of kale, parsley, bok choy, endive, broccoli etc. I often throw in an apples or orange and the juice of a lime or lemon. There are lots of juicing options and overtime i have been able to reduce the fruit and increase the greens.

I also have a high speed blender and do a couple of different smoothies throughout the day. I make mine with water but you could easily add in some type of nut milk or dairy if you consume it. My smoothies tend have more fruit in them but i still have some type of green leafy vegetable and a cucumber. Any seasonal fruit can work in s smoothie and i keep a supply of frozen berries, mangoes, pineapple etc in case my fresh supplies are running low.

Some of the extra add ins in my smoothies include, chia seeds, maca powder, sunflower seeds, pumpkin seeds, flax seeds and a pea protein powder. The options are endless and you could add in some nuts or coconut milk if you needed the extra calories.

I also make lots of veggie soups and add in some lentils or other legumes if i am really hungry and then blitz the whole thing up so it is smooth. The other thing that I do is to make sure I have something in the freezer for days when I am busy or just can't be bothered to make something fresh. You can freeze juice, smoothies and soups in individual size portions and I defrost them in the fridge.

I do feel better when i eat better but it can be so hard sometimes........I just do the best I can.

I work with a personal trainer 3 times a week and he works with a lot of clients that have multiple health issues so he has been excellent at making accommodations for me when I am in pain. Once a week I work with a physical therapist and she has been working on my neck and skull and I am learning how to relax the muscles I tense when I am in pain.

I also meditate on a daily basis and it has helped me to stay less stressed as I am a worrier by nature.

Sending you a big healing hug.

Trish

23

Thanks Trish,
Makking a commitment to myself is what I am in the process of starting. I have started stretching and b12. Meditiation is difficult but I have started. Nutrition is next on my list (oh how I miss chewing !!!). It will be baby steps but I figure bad nutrition is bad for the body and mind. I am getting a nutribullet this week and like your idea of gradually eliminating the sugars. Thanks for the tips on the extra ingrediants.
I sooooo appreciate everyones kindness and support. All of you are fantastic. You are all helping me gain a better mind and a better body.

24

Liligirl, to me this group gives so much hope and strength. It is truly a community and a safe haven and empowers us with so much information that our doctors often do not know.

25

Hi Liligirl

Sorry To hear about your pain.!!! It's a hard journey for all of us. I want to recommend a book I found from this site

Facing Facial Pain- WWW.FacingFacialPain.Org from the Facial Pain Research Foundation It's been very Helpful.Proabably contains everything you need to know. I Have Bi Lateral TN I now I use lots of Vitamins B's especially B-12

as this helps to heal the Myelin Sheath which is what we need to try do do. Believe me I'm not there yet but I'm really trying.. There is a product called Myelin Sheath by Planetaryherbals..com Try it it's worth.

I hope this helps you

vent any Time

Wishing us all a Pain Free Day

Sandi

26

I am so sorry to hear it's been so rough for you, Lilgirl.

Here are some things that have worked for me:

Medical marijuana that has a close ratio of CBD to THC (which are Harlequin strains). I try to only use it if it is about a 8% CBD/12% THC split or something similar (most marijuana has much more THC). Anything with higher THC, and I just get dizzy and it doesn't help. With higher CBD and no THC, it takes an awful lot to reduce the pain. This seems to be the right mix of anti-immflamatory, pain relief, and relaxant. I build up a tolerance with each strain, so I rotate them.

-Fish oil, taken daily as a supplement, to insulate the nerve endings as they regenerate.

-B12, for the same thing.

-Lots of omega3 fatty acids in my diet, like salmon, flax seeds, and tofu.

-And my medications, which are gabapentin (900mg 3x daily), Baclofen (10mg 3x daily) and oxcarbazepine (Trileptal) (750mg 2x daily).

I hope any of these things help you! I wish you relief. All of you are in my prayers.

27

B12 is very important-but make sure it is methylcobalamin and/or adenosylcombalamin and not cyannocobalamin. Anyone having MVD surgery should take B12 and fish oil especially after the surgery to help the nerve repair itself since the culprit that caused the damage has been taken care of. I had MVD surgery in September and continued to have worsening symptoms after the surgery. After reading the book "Headache Free" by Suzy Cohen last month I started taking fish oil and Active B12 from seekhealth.com started by Dr. Lynch. I have been able to eliminated Baclofen and Cymbalta from my drug list and am now only on gabapentin 400 mg 4 times a day and have not had to use a lidoderm patch in over two weeks. I had been considering Gamma knife or Cyber knife surgery but now the results have been so good I'm going to just stick with what I have. I still have some pain-especially if I am late taking the gabapentin but things are incredibly better.

28


Hi Hamboy,

Thanks for this information. I had the MVD surgery six weeks ago and feel I am worse instead of better. I have even had to increase my Topomax and Zanaflex. I am not able to take Gabapentin nor Baclefen. I had it done at Johns Hopkins. I have a follow-up with the surgeon in two weeks. I saw my neurologist last Friday and she is decreasing my Topomax because it causes so many cognitive problems--it is known in the industry as "Stupemax" and she increased my Zanaflex.

I take B-12. I will check to make sure it is what you have mentioned. I live on Lidoderm patches. How much B-12 do you take? I will also check with the neurologist on the fish oil. I know it is recommended for people anyway. I see my pain specialist this week, but I am not sure he will be of any help as he is not that familiar with Trigeminal Neuralgia. However, I have cervical disc disease that I think was also aggravated by the surgery and that has caused me a lot of problems.

As crazy as this may sound, I just feel less depressed knowing I am not the only crazy person who did not have a miraculous recovery after MVD surgery. As I am saying this, I wish your surgery had been successful and mine as well. My neurologist told me to keep having HOPE and had also mentioned the Gamma knife or cyber knife, but I am not at all ready for another surgery at this point.

Linda


hamboy said:

B12 is very important-but make sure it is methylcobalamin and/or adenosylcombalamin and not cyannocobalamin. Anyone having MVD surgery should take B12 and fish oil especially after the surgery to help the nerve repair itself since the culprit that caused the damage has been taken care of. I had MVD surgery in September and continued to have worsening symptoms after the surgery. After reading the book "Headache Free" by Suzy Cohen last month I started taking fish oil and Active B12 from seekhealth.com started by Dr. Lynch. I have been able to eliminated Baclofen and Cymbalta from my drug list and am now only on gabapentin 400 mg 4 times a day and have not had to use a lidoderm patch in over two weeks. I had been considering Gamma knife or Cyber knife surgery but now the results have been so good I'm going to just stick with what I have. I still have some pain-especially if I am late taking the gabapentin but things are incredibly better.

29

I have been on prednisone for 5 weeks and it has given me a lot of temporary relief from pain. I only get pain after chewing a meal at this point. I also have been taking 2000 mg of b12 and will continue to take it. I know the prednisone is only a temporary stop gap but it is amazing what a relief it brings. It also allows me to reduce my tegretol so when the pain comes back I can then increase my tegretol amounts back up to what I was taking. It takes about 4-5 weeks for the prednisone to make a difference.

30

After my MVD surgery didn't give me relief I started trying to find ways to understand nerve myelin regeneration. I tried visualization and although that would take my mind off the pain=I wasn't getting any lasting help. It bothered me that the Gamma knife, cyber knife and other procedures were designed to basically injure or cause a lesion on the trigeminal nerve to interfere with the pain transmission and that normally over time my body would work to heal the injury/lesion leaving me susceptible to reoccurrence. For decades I have lived with poor digestion health and never thought that it could be related to the TN. A simple blood test showed that I was Vitamin B deficient. I now take a simple B12 pill every morning under my tongue and let it dissolve-just swallowing Vitamin B causes most of it to pass through your body with little absorption. I started at 1250 mg (1/4 tab) and ramped up to one full tab a day (5000). linreed It is also supposed to make you feel like you have more energy-I'm not sure, but not getting zapped 20+ times a day is a miracle to me. I still need the neurontin and get some pain if I am more than an hour late with the med but it has really helped. The fish oil I just started so I can't comment yet-but I will let you know as things go forward= Best of luck and here's to hoping for better days ahead!!

31

Hi,

Thank you so much for this information. I know that we all are different and experience the pain differently, but I do appreciate the information you have shared.

Linda


hamboy said:

After my MVD surgery didn't give me relief I started trying to find ways to understand nerve myelin regeneration. I tried visualization and although that would take my mind off the pain=I wasn't getting any lasting help. It bothered me that the Gamma knife, cyber knife and other procedures were designed to basically injure or cause a lesion on the trigeminal nerve to interfere with the pain transmission and that normally over time my body would work to heal the injury/lesion leaving me susceptible to reoccurrence. For decades I have lived with poor digestion health and never thought that it could be related to the TN. A simple blood test showed that I was Vitamin B deficient. I now take a simple B12 pill every morning under my tongue and let it dissolve-just swallowing Vitamin B causes most of it to pass through your body with little absorption. I started at 1250 mg (1/4 tab) and ramped up to one full tab a day (5000). linreed It is also supposed to make you feel like you have more energy-I'm not sure, but not getting zapped 20+ times a day is a miracle to me. I still need the neurontin and get some pain if I am more than an hour late with the med but it has really helped. The fish oil I just started so I can't comment yet-but I will let you know as things go forward= Best of luck and here's to hoping for better days ahead!!

32

Hi Liligirl,

Before my remission I was on Lyrica for the pain and it was very helpful. There are a few side effects like weight gain and dry mouth but the benefits outweigh the side effect. Not that I am out of remission my neurologist prescribed it once again but my insurance company refuses to pay for it. You insurer may not be so bad. Also, I find frozen yogurt good on those days where the pain is bad but not so bad that you can still eat.

33

I empathize with you. I have Type 2 TN due to a brain tumor. I use Kanka, a product designed for someone with canker sores, but it helps to calm the trigger points for a while. I also live on pancakes, scrambled eggs, and steamed vegetables (the kind that come in packages from the freezer). My neuro ordered Lidocaine 2.5%/ Prilocaine 2,5%, which helps when the trigger points are close to the surface - the only way I can describe it. To my dismay, I have found that chocolate seems to aggravate the nerve. Coffee, on the other hand, seems to soothe it. During the worst attacks, the nerve wants me to sit bolt upright and drink coffee. I also have to try to sleep that way. Television provides my only distraction. By the way, I noticed some of you are using the lidocaine cream. It turned my skin into sand paper and I can't find any kind of cream to soften it. Any suggestions would be appreciated.

34

I have very dry skin and the best thing I have found is products containing shea butter. Ideally where it is a main ingredient. Raw shea doesn't smell great but with a few drops of E/O it can hydrate nicely.

Webster said:

I empathize with you. I have Type 2 TN due to a brain tumor. I use Kanka, a product designed for someone with canker sores, but it helps to calm the trigger points for a while. I also live on pancakes, scrambled eggs, and steamed vegetables (the kind that come in packages from the freezer). My neuro ordered Lidocaine 2.5%/ Prilocaine 2,5%, which helps when the trigger points are close to the surface - the only way I can describe it. To my dismay, I have found that chocolate seems to aggravate the nerve. Coffee, on the other hand, seems to soothe it. During the worst attacks, the nerve wants me to sit bolt upright and drink coffee. I also have to try to sleep that way. Television provides my only distraction. By the way, I noticed some of you are using the lidocaine cream. It turned my skin into sand paper and I can't find any kind of cream to soften it. Any suggestions would be appreciated.

35

Hi, My creme is a different mixture. My pain specialist said it depends on what else a person is taking and also how one reacts to medications. So, I guess we could all be on different types.

Linda



shadow2 said:

I have very dry skin and the best thing I have found is products containing shea butter. Ideally where it is a main ingredient. Raw shea doesn't smell great but with a few drops of E/O it can hydrate nicely.

Webster said:

I empathize with you. I have Type 2 TN due to a brain tumor. I use Kanka, a product designed for someone with canker sores, but it helps to calm the trigger points for a while. I also live on pancakes, scrambled eggs, and steamed vegetables (the kind that come in packages from the freezer). My neuro ordered Lidocaine 2.5%/ Prilocaine 2,5%, which helps when the trigger points are close to the surface - the only way I can describe it. To my dismay, I have found that chocolate seems to aggravate the nerve. Coffee, on the other hand, seems to soothe it. During the worst attacks, the nerve wants me to sit bolt upright and drink coffee. I also have to try to sleep that way. Television provides my only distraction. By the way, I noticed some of you are using the lidocaine cream. It turned my skin into sand paper and I can't find any kind of cream to soften it. Any suggestions would be appreciated.

36

my drs think I have tn and I am on a peg I eat two meals by mouth and 3 by peg Iike butternut squash baked and to drink payaya juice and pineapple but I cant drink juices another nurse said eat steak and eggs a lot more protein I have gained 15 lbs since sept when I weighed 89 so butter and burger king is working I can eat a lot of comfort foods but when I do I get more mucus sugar seems my biggest trigger and milk and especially chocolate hopr this helps

37

Hi

Sorry to hear about your problem. I think we all get in that position at some point. I have found that in order to get the sweet taste but to also get the fruit that I despretely need Dole makes these Shaker things that are in the freezer dept in Walmart and other big stores. They have several great flavors. All you do is add milk or juice ( I add juice) and shake. Once it is all mixed you just drink. They come in single serve bottles in the freezer isle and cost around $2. I also have a mini blender that my hubby gave me that is only big enough to make 1 shake/slushie you put in your fruit or anything else you like and whatever liquid to make it drinkable. then you put the blade on top and tighten. Next turn upside down and put on base and blend. Then you take the blade off and put the drinking lid on and go. The blender body is also the cup you drink out of. This is just idea but it gets used in my life a lot to help with only being able to drink or eat soft food.

Also if any of ya'll are close to a Sheetz gas station have you tried the Pumpkin Cheesecake Milkshake they have??? It is WONDERFUL. It is like drinking a frozen pumpkin pie.