Not signed in (Sign In)



Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

Welcome Guest!
Want to take part in these discussions? If you have an account, sign in now.
If you don't have an account, apply for one now.
    • CommentAuthorlindyd
    • CommentTimeMar 16th 2016
     
    Thanks for sharing.. let us know how you get on...not sure I would receommend anyone with severe SS to try this! but if you can eat spicy food then worth a go for you.
    This is one thing I will NOT be trying lol.. I can't go anywhere near ANYTHING hot and spicy let alone eat it! capsaicin is a definite no for me.
    I recently ate an orange coloured boiled sweet and my whole mouth and throat burned horribly.. it really scared me...when I checked the ingredients (which I hadn't previously) I found that the orange colouring was derived from capsaicin (how odd!). My husband ate the sweets happily and said they just tasted of orange!
  1.  
    BA and lindyd,

    BA,

    Please be careful, this could help, but it could make you worse. I speak from experience. Capsaicin, the hot in chili peppers, activates TRPV1. I have studied these pain channels extensively, and if you are like me, you are having a neuropathic inflammatory response via TRPV1 ion channels. You are not having an allergic response. The desensitization that you are trying may help, but I think that it is risky because it could make the nerves on your tongue and throat more responsive. As far as your face is concerned, see if your doctor will prescribe a compounded cream with 2% Amitriptyline. I use it twice a day on my face and it has made a big difference in the responsiveness of the nerves. It was prescribed by my orofacial pain specialist, but my doctor at Johns Hopkins was impressed that she had come up with this cream and said that he had patients that this might help.

    Read this article
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735846/

    It doesn't specifically talk about sals or facial pain, but it is a great introduction to TRP Channels and sals do activate

    lindyd,

    So sorry about the orange coloring, I'll watch for that.

    I haven't read this article yet, but it looks like it has info on TRPV1 and Methylsalicylate.
    http://molpharm.aspetjournals.org/content/75/2/307.full.pdf
  2.  
    Is there anyone anywhere in the world working on this stuff?
  3.  
    Yes, but like many neuropathic conditions, there are things that help, but there is no cure. TRP channels are highly researched. According to a chart compiled by Hydra Bioosciences, there has been a surge of interest in TRP channels. In the year 2000 there were just over 200 TRP related papers on Pub Med. The numbers have increased every year, with almost 1,600 papers in 2015. I have not looked for papers specifically written on salicylate sensitivities, but science says that if nerves are sensitized to one TRPA1 or TRPV1 irritant, they are sensitive to all TRPA1 or TRPV1 irritants.

    There is a new book, TRP Channels as Therapeutic Targets: From Basic Science to Clinical Use,
    Originally published: April 1, 2015
    Editors: Arpad Szallasi

    Look at the TRPs Revisited discussion on this site (page 2 of the discussion) Namid has pulled together a great list of TRP activators. TRPA1 and TRPV1 are my major sensitivities. My initial sensitizing agent was TRPA1, but because TRPA1 and TRPV1 are co-expressed, I am sensitive to both. Some are more robust activators than other. Avoidance is my best hope right now, but I also have been greatly helped by the drug gabapentin.

    Research has exploded because the burning pain of diabetic neuropathy and the burning pain of many cancer drugs are triggered by TRPA1 irritants. In the case of diabetes, the irritant is generated internally.

    You should be able to see a free copy of this article online.
    Chemosensory properties of the trigeminal system.
    FĂ©lix Viana
    • CommentAuthorBA
    • CommentTimeMar 28th 2016
     
    TRP sensitive,

    Thank you for the detailed notes. Yes, I am worried about overdoing the capaisin 'therapy' - and really think rotating it every 3-4 days is about as far as I will go. I did eat Indian food yesterday without any problems... a meal that I stopped eating because it *should* have been a problem even though it never really was. I have not heard about the cream you mention, so I will look into it also. Do you know much about niacin? I understand it also works with the TRPV1 pathway, and wondered if it might be beneficial long term.
    • CommentAuthorMichaelv03
    • CommentTimeMar 30th 2016
     
    I tried the chili powder and it back fired. I think a lot of people sensitive to sals have to avoid any and all spices. Well, chili powder is of course a spice. I believe that maybe capsaicin in its pure chemical form may be beneficial but when it comes in the actual spice form it can cause problems. I have yet to try capsaicin in pill form.
  4.  
    BA

    I just did a bit of research on niacin (also called vitamin B3 and nicotinic acid), it does appear to activate TRPV1. It has been used to prevent lipid build up, but some people can't take it because it causes vasodilation and flushing. I won't try it, but I can't say what is right for you. I suffer from so many painful TRPA1 and TRPV1 related conditions, that I am hesitant to try anything else. For now I'm just avoiding, as much as possible, anything that activates these TRP channels.

    I wish that we could find a list of TRPV1 activators based on how robustly they activate. Maybe then one could try some sort of desensitization protocol using a mild activator.
  5.  
    Just wanted to add something to the Chili thread.

    My salicylate problems are so bad that I actually have seizures, so avoiding them is really REALLY important for me.
    It took me 3 years of seeing various doctors, dieticians, naturopaths, gastroenterologists and eventually a neuro to figure out it was sals.
    I've tried every diet going and right now I'm blissfully 6 months into a super restrictive non sals diet, which has improved my quality of life 100%

    But! It's all because of Chili flakes! Please persevere with it, it's really important to add them in DURING the cooking phase not just sprinkle them on top of a meal later.
    The cooking helps the Chili to release properly into the food, I don't know why but it works way better when I use it this way.
    For instance a big staple for me is home cooked kennebec potato chips in rice oil, with garlic, I always add around 2 1/2 teaspoon of chili flakes right at the start
    before cooking slowely for 40-60 mins in the oven.
    I eat this almost everyday and it keeps my chili barrier going for the next 24 hours.

    Also if your thinking of taste testing something to add to your diet and it turns bad (I can usually tell within 20 minutes of eating/drinking because I start seizuring) my partner quickly makes me a cup of boiling water with 1 teaspoon chili powder, I'd say after drinking half of it within the next 20 minutes I'm okay again.
    It generally wears off after around 3 hours, by which time I can just make another hot chili drink and keep doing this until I'm clear the next day.

    This has been amazing for me because anytime we would try adding something new to my diet in the past, I would be risking being bedridden for 3-4 days coping with the aftermath if things went wrong.
    So give it a go, try different brands of flakes (we tried 3 before we found one that worked) also real chilis are great to add to a meal if you can find them.
    Also if your well enough to try things outside of homecooking (which 6 months ago I would never have dreamed of) see if restaurants offer any spicy dishes with actual chili or chili sauces.
    My boyfriend and I found that I can actually eat a Spicy salmon and steamed rice dish at our local chinese place, it's been wonderful having something I can actually eat when we go out!!!
    I'm even managing to get away with the few vegetables/ingredients they put in with it (Capsicum, Carrot, Shallots, Oyster Sauce) these are things I'd never dream of eating normally, and I actually used to pull them out before eating the meal because I was so afraid before.

    So basically chili could be your super secret food weapon if you use it correctly and give it a chance! It's better to try and fail than not try at all!!
    Also I live in Australia and I've decided to post my diet list here for anyone looking for SALS safe stuff.

    Master of Spices Chili Flakes
    Kennebec Potatos
    Garlic
    CSR White Sugar
    Rice Oil
    Four Roses Self Raising Flour
    Eggs
    Devondale Butter
    Kerrygold Butter
    Kikkoman Soy Sauce (every other soy sauce sets me off)

    Aktavite (Kind of like a healthy Milo)
    So Good Soy Milk
    Vittoria Mountain Grown Coffee (all other coffees set me off, amazed I can even drink this)

    Mi Goreng Spicy Noodles (In fact any spicy 2 min noodle variety is okay, also most 2 min noodles in Australia are Indonesian, they make the best spicy food)
    National Beef Pies
    National Pasties
    (National products are in the frozen pastry area at your supermarket generally $2 - $3 bucks each, again they have small amounts of veggies so I'm amazed I can eat them)

    It look's pretty unhealthy, but for me it covers everything and on it I'm able to live a semi normal life now, which is what matters most in the end.
    Don't feel bad for not eating your greens everyone, veggies might be healthy for normal folk but it's poison for us :(
    • CommentAuthorAvatar
    • CommentTimeNov 8th 2017
     
    Wow, that's amazing, spooknspell--thanks for sharing! I'm so glad you're doing better. You have given me courage to test this out, but I'm still going to wait for a Saturday night to try, in case I do have a bad reaction.
    Back in my pre-ss days, I used to sprinkle cayenne into my drinking water during hayfever season, and it helped keep the itching and sneezing at bay; makes some sense it could work for us now.


    (Regarding other topics above: check out the inositol hexanicotinate form of niacin if you want to try; it doesn't give the unpleasant flushing of regular nicotinic acid. I know from experience. Also, steamed kale has been a good veggie for me for a long time, but ymmv.)