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anaphylaxing

Bedridden To Hiking. Don't Give Up!

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Just in case I didn't tell everyone here. . .

Last fall (2011) I was using a wheelchair to get around and mostly bedridden due to the severity of my POTS. One year later, I can walk wherever I want and can hike up to 3 hours. I started running but had to stop because I'm having gallbladder issues.

I also have MCAS with anaphylaxis and I did the following over the past year:

  • Get a good sleep every night, drink lots of water
  • Fresh air!! Open windows.
  • Get rid of all chemicals (cleaners, cosmetics, shampoos, detergents, scented candles). Clean with water, unscented soap and that's it. Avoid indoor places other than my scent free home.
  • Stayed on H1 and 2 blockers, mast cell stabilizers and antileukotrienes, but have cut back slightly
  • Tapered off steroids
  • Pushed myself to stand, walk etc as much as I could when I was well enough with ice packs close by to prevent overheating
  • Doing a reintroduction, elimination diet with only organic freshly cooked foods
  • Eat small amounts
  • Stopped taking any non essential supplements or meds

Of course everything I've done might be partly irrelevant as the passage of time might've been the biggest help. But a lot of it I had to do to lessen my reactions.

I thought I was going to die and I would never walk again or feel like myself. I'm still not who I used to be and have to make a lot of adjustments but am SO much better than I was. Don't give up! You never know what's ahead!

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That's incredible, and I'm so glad to hear it. I'm curious as to how gallbladder issues interfere with running?

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Wonderful and thanks for the encouraging update! Sounds like you have worked hard for your recovery and congrats!!

Did you have sudden onset POTS and for how long were you bedridden, if you don't mind answering?

I think some of us wonder how recovery happens....over time - week to week, month by month?

THanks!!!

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Congrats. I'm having similiar results from avoiding excitotoxins, esp gluten, getting plenty of sleep

and taking Wal-zyr (Walgreens zyrtec). It appears that treating my allergies was the missing puzzle piece.

It's taken me 7 years to get here but I've been healthy at rest since oct 2007. That was just from eliminating toxic

foods, esp gluten, in 2005. I used a motorized cart from 1990 - 2006 due to gluten ataxia.

My oi appears to have been from vasodialation from allergies. Unless there's some

mast cell or other allergy triggered response in the brain, stomach, heart, etc that forced me to lay down that I'm not aware of.

I still have to treat my gluten reaction / celiac, seizures and my hypoglycemia but so far that doable with the wahls diet, supplements and meds. I hate that anyone can claim their foods are gf and yet my body knows

better. I just got nailed yesterday at a restaurant with a big beautiful gf sign on the wall.

Fwiw tho, I've felt completely healthy, like a younger person, several times since I started my healing journey

only to crash later. But I have me/cfs so I may not be able to sustain a normal persn's activity level. I won't know if allergies were involed until I've been on the meds for awhile.

I just wanted to give you a head's up so you don't run yourself ragged and cause a crash. Been there done

that .. Tc .. D

Ps. I wanted to chime in here with my story for all those thinking this is some kind of miracle. It's not. We've just

been lead to believe diet and chemicals can't make us this sick. The studies on these chemicals is based on being exposed to small amounts not ALL the chemicals we're exposed to on a regular basis.

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Btw, I keep forgetting to tell you that gall bladder probles have been linked to gluten intolerance.

I had mine out before going gf. A freind of mine had a smarter doctor than I did and was told to go

gf. She still has hers. It's not a disposable organ like we're lead to believe. Definitely do your research before

having this out.

tc .. D

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Hi, Ana! Great news! I'm still on my POTS, MCAS journey and have not improved enough to talk about it. I exercise daily for 40 minutes - 1 hour with a treadmill and weights. So far, no improvement. I'm still way more fatigued than I would like to be.

I am beginning a benzodiazepine soon to see if I benefit.

All in all my life from beginning to end has been a deterioration. I used to have good times in between the attacks. Now, I have some symptom or another daily. But I have never lost hope. I'm working with Dr. Afrin now with the benzo.

I love to hear success stories. It is difficult to know exactly what caused your improvement, whether it was all your things on your list , some of them or none of them. Time does help until you get older like me (I'm 61 yo) and the "good" times become more scarce. I'm able to life my life, but suffer from debilitating fatigue and weakness on occasion.

Keep up the good work. I hope to have a similar story to yours soon.

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I doubt that going GF will do much good once your gallbladder is wrecked, they're not really salvageable by that point. If it's helpful at an earlier stage, that's presumably useful to someone, and interesting in a general way. After all, gallbladder problems affect a lot of people and they tend not to be very sure why it's hit someone. I don't think they tend to realise that there's a problem until the gallbladder is non-functioning, however. With retrospect, I would have left mine in, but that's because the surgery really affected me badly, and I ended up with post-surgical pain whenever I took opioids on an empty stomach. Having to stay on a low-fat diet for life would probably have been less hassle overall. It really is an individual thing, though, some people are at higher risk of complications than others.

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Hi batik,

On the gall bladder. I'd suggest anyone skip the surgery until you've tried changing your diet. If my brain can heal

enough for me to walk, I'm guessing a gall bladder might too. It's amazing how many organs are affected by

gluten. It's all in theglutenfile.

My freind's was functioning at 11% just about the same as mine when

her doctor pointed out the gluten connection. It's been 5 years and she still has it. I'm not sure

how much more wrecked a gall bladder could be tho. Mine's gone. End of story for me.

I never googled it but I'm assuming the connection is on the web. I don't know how her doctor knew this.

Tc .. D

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Perhaps going GF was enough to prevent attacks but not to restore gallbladder function? From what my surgeon told me, once a gallbladder gets to the point where it's full of stones, it's not working and it's not going to work again in the future. Even if you somehow managed to remove the stones non-surgically, the gallbladder itself is too scarred to work again and will form stones again. Now, a non-functional but non-attacking gallbladder is no worse than having no gallbladder at all, either way the job is now being done entirely by the liver, and the first option spares you the surgery. Although I'm not sure I'd prefer a lifetime of being GF purely in order to avoid that type of surgery, it's a decent choice to have.

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Just because ya'll are talking about gall bladder surgery... When I first got sick to the point of gastroparesis, they thought it was my gallbladder because it was only working at 17%. I got it removed and I really wish I didn't. There was no stones.. nothing wrong.. just a little inflammation. My neuroendocrinologist said later that it probably was not functioning right at the time because of the dysautonomia. My GI symptoms were much worse without a gallbladder and the surgery slowed everything in my body down which took a long time to recover from. I know it can help some people but its not always the case for everyone. My only advice to anyone being consulted for the surgery is do your research first cause once you see the surgeon, they are pretty much gonna convince you to remove it.

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Since this thread has taken a turn towards gallbladders, I'll add my two cents. I had my gallbladder out because of thickened walls, which denotes inflammation or malfunction. I felt pain every day from it towards the end, no matter what I ate. I did not have stones in my bladder. It probably was not functioning though.

I have no regrets. I do not like the idea of walking around in pain and avoiding fat. I'm saying this even though my reaction to the surgical meds was a nightmare. I have MCAS and am sensitive to anesthesia and pain meds. They make me extremely ill.

So, in my case, I do not have my gallbladder, and I do not care. It was doing nothing but causing pain.

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Ana,

Your story is certainly remarkable and your diligence and attention to detail obviously helped you find your way, which in itself is another bullet point: You learned how to listen to your body, then learned how to trust what your body is saying to you.

As Ana's story illustrates, she eliminated the barrage of chemicals insulting her organs, gave her body what it needed and was patient to not give it too much (used supplements, vitamins, meds sparingly then tapered when necessary), recognized the importance of sleep, diet and excercise, and began to literally spoon-feed her body the basic building blocks to reset her body chemistry. Her prize is her success proven by getting out of bed/wheelchair and hiking up to 3 hours these days. Congratulations!!

Many of us with MCAS and/or MCS are living examples of how our immune system can become uber sensitive to the products of this era. Consider us to be "canaries in the coalmine". Do NOT under-estimate the effect of your environment on your current condition. Don't let anyone (not even your physicians) try to convince you that the fragrences, preservatives, dyes, artificial sweetners, toxins, viruses, allergens, inactive ingredients in meds, and loads of other chemicals can't do harm. Mast cell patients are walking proof of this assault on humanity. But Ana's journey is proof that while it may be overwhelming and take a long time, it can be done. Thanks for showing us one can control their environment and repair some of the damage that put us in this position in the first place. Bravo !!

Lyn

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Thanks for all of the replies. Well said Lyn! I'll try to make sure I cover people's questions:

Looking back at my whole life I've always had POTS/OI tendencies, but becoming aware of this hit me suddenly with a post-prandial attack of tachycardia up to 160 bpm. Thereafter I realized that my HR was sky rocketing everytime I stood and sometimes at rest. This was (I think) about a month after my severe persistent anaphylaxis to CT contrast. Before the contrast, I had been having increasing fatigue, night sweats, paresthesiae, and muscle twitches. I was at my worst for another 4 months-- on varying doses of high dose steroids, needing to use a wheelchair to cover any distance more than my room, and walking then was very uncomfortable and frightening. This time still had an undulating baseline of flares with severe tachy even at rest which I eventually realized were after eating and worse with cycles.

I had to let go of my usual "push yourself, busy body attitude" well at least look at it in a different way. Re-examine every thing my body encountered and become skeptical of every medication, inhaled/ingested substance and every proposed theory presented to me for why I was like this. (Which was often that it was just anxiety :S)

Little by little, trying to only change one thing at a time, some progress was made. But I am still in a very cautious place. I need 10+ hours of sleep or I get worse, mostly stay home or outdoors to avoid inhaled chemicals, am still on an elimination diet, and still planning to try reducing meds after surgery.

For my gallbladder, I had it imaged and it was completely normal and I was asymptomatic prior to my first anaphylaxis. A month after my reaction I went gluten free and the cholecystitis began 6 months after that. I'm not saying it was from going gluten free just giving you the timeline since it was brought up. Gallstones are common, but the proposed theories in my case are that the long term steroid use raised my cholesterol levels along with becoming Cushingoid a few times, also I overall had more fat in my diet as there were only a few things I could consume safely whereas the "old me" rarely ate anything fatty. Being bedridden for periods instead of getting regular exercise probably didn't help either.

I had multiple attacks before I clued into what was happening and they were always after fatty meals. for 2 months now I've had constant pain that varies in intensity. My gb is full of stones and thick walled on u/s. All of my docs are reluctant to have surgery and it is a last resort because of the severity of my anaphylaxis and my overall sensitivity to so much right now (people doing laundry down the street makes my throat swell and I have instant SOB stepping into the hospital). But, an emergency surgery that is not carefully planned would also be dangerous. So the careful plans are in the works. I think surgery and general anesthetics should be avoided at all costs in everyone, but especially in us. This is my last resort. At this point it's hard to imagine surviving!

Batik--good Q---my constant gallbladder pain is aggravated by the bouncing of running likely because I have peritoneal irritation in that region. Very annoying how much it's getting in the way of my recovery. I didn't see that one coming!

I am back on gluten and have not flared from it, but realize it is a major trigger for many. Each of us are so individual and we need to listen to our bodies like Lyn said. I am not posting what's worked for me to say it will work for anyone else, we are all so different. But in case there's a glimmer or idea that I can save you time in thinking of yourself, I wanted to share what I did. I know reading everyone's posts has been so helpful to me.

My life now is still nowhere near normal, but when you've tasted worse and have some progress, it's glorious. As far as the speed of my recovery it's felt like watching paint dry. It's only when I stepped back and realized one year ago I was using a wheelchair and now i'm on a hike, it hit me! So I guess it's been gradual over a year. Hopefully surgery doesn't set me back too far. My adrenal function also returned after a slowww taper of steroids so I'm sure that's played a part in my feeling better. I stopped steroids last May.

For those of you who are struggling with much worse things than me, I sooo feel for you and am sending you strength and encouragement over the web. Don't give up! And thanks to all of those who supported me.

I will post an update if there are any other big changes or developments.

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A big congrats to you ana. Its so great to hear a success story. Its one of those little pcs of hope that often keeps me pushing on.

I have fought many battles in my life but none as viscous and unrelenting as dyaoutonomia/POTS. All the things you need to fight something like this is exactly what it zaps right out of you.

Keep up the hard work and dont let your guard down. I hope for continued progress for you.

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Thanks Troy. I hear ya, nothing in life can compare to the struggle for to stay alive and cope with chronic illness. I appreciate the encouragement and I wish you strength and determination which it sounds like you already have :)

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Ah, the gallbladder/running thing makes sense now. Bummer, really. Although it is so fantastic that you can exercise at that level now! Are you managing OK with the low-fat diet? I discovered the fun way that doctors are taught nothing about nutrition, and eventually found out that it's not so much about what percentage of your diet is made up from fat, it's about how much fat you eat at any one sitting. For me that limit turned out to be 10g. There can also be issues of opioid painkillers reacting badly with gallbladders, do you use those at all? I was fine in that respect before the surgery, but after the surgery I discovered that I can only take opioids on a full stomach, otherwise I get post-surgical pain where my gallbladder used to me. And a friend of mine has the same problem with opioids, only I think she still has her gallbladder. It turns out to be fairly widely reported on the internet.

Interesting about the steroid use. I've occasionally been told that I should try cortisone shots into my shoulder due to calcific tendinitis, but on doing my research I decided not to take the risk.

By the way, do you actually like being called Ana, or would you prefer another nickname? I'm aware of some of the implications of that name, and I didn't know whether you chose it or whether people have just been shortening your full user name without asking.

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That is awesome that you are getting a "new" life and overcoming some of the grip POTS has had on your life! I wish that for all of us here! Have FUN!

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Awesome, Awesome, Awesome!

I think we are chipping away at my issues, too, and it also seems to have a lot to do with my allergies/sensitivities. I think I am about to be going gluten free, too. I do not test positive for allergy or Celiac but all my docs agree that the level of inflammation I have can only be helped by going gluten free.

You are an inspiration.

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Thanks again everyone

Batik-- yes initially it was only with a lot of fat. Then was after two eggs, then after about 2 g of fat and now as little as 1 (combined from veg sources) or none at all. I haven't eaten and fat sources for over two months now though I know veg etc can be a negligible source of fat.....So it's progressively becoming fed up with me. p.s. I love the "bits and bobs" in your signature. Yes I go by Ana. I think you are wise to avoid steroid joint injections, can also increase risk of tendon tears etc I've been told though might give temporary relief. Oh p.s. I see you're suspected mastocytosis...you probably already know that they generally recommend avoidance of opiods and NSAIDS in mast cell patients as they can make things worse. Though, every person is different. Makes things tricky for planning surgery pain meds!

Good luck sue and Katybug. Hope there are lots of improvements in your future! :mellow:;)

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