Elenapap11 Posted December 7, 2012 Report Share Posted December 7, 2012 I haven't visited the forum for quite a while and that is because i was focused on getting better.For people who have been in this forum for a long time,they probably remember what i have been through all these years.Doctors,treatments,hospitalisation,various diagnoses(contradictory),disbelief, desperation etc...So finally there is light at the end of the tunnel.I wanted to share it with you because i know how much everyone wants to wake up one day and make everything go away and get their life back.The last time i visited my GP i was so tired of trying to find solutions that i promised i ll never visit a doctor ever again.Ofcourse my Pots crises,asthma attacks and GI issues made me want to rush to the hospital several times but i was really stubborn.I told myself that i've tried everything conventional medicine has to give and i am just getting temporary relief(sometimes no relief or getting worse).It was then that i decided to try alternative therapies more cosistently.So i went to a doctor who specialises in homeopathy and accupressure.I was very hesitant because i would have to stop using all my other medication(medrol,aerius,inhalers,losec,etc)and even give up coffee which was really important to me(it gave me energy to start the day and rise my low blood pressure).Especially when she started telling me things about my personality and how my energy is blocked i thought:'great!Another waste of money to hear nonsense.' But for some reason(probably being so desperate)i decided to give it a try.Within two weeks i started feeling better.The doctor then suggested that i start trying mild exercise like yoga.So i did and it was great not to feel like fainting after such a long time.Because i stopped medrol and aerius i lost weight without even trying and every day i witnessed a positive change in my body.I even got rid of my red spots on my face.Two weeks ago i got the flu and i was so certain that i'll start having POTS symptoms and that i'll need to go to the hospital for oxygen.I called the homeopathist and she told me to buy some capsules and avoid taking inhalers or cortizone pills.She also gave me some tips on what to eat and what to do everyday.I was scared to death that this would turn into a lung infection like it did in the summer.Miraculously it lasted for five days with very mild symptoms and no fever.For me this is a first because everytime i got the flu i was in bed with really high temperature,tremor and bodyache.Now i got better in five days without the help of paracetamol,inhalers or antibiotics.I can't even remember when i felt that well.I could write pages of things that have changed but in a nutshell what led to my getting better is a combination of things and a very drastic change of life and attitude.My therapy was:1).homeopathy treatment.2)strict diet with major reduction of gluten,no sugar(i use honey instead),no coffee,lots of water,little salt(yes i managed with little salt without fainting)short frequent meals,no junk food.3)daily meditation and mild yoga.4)accupressure therapies/reflexology.5)i don't force myself to be an overachiever anymore.I realise that i can't have everyone happy and that my priority is to keep myself happy even if that might be inconvenient for others.It's OK to be me.It's OK to need more rest than others.When i feel well i don't overdo it with housework or work at school or trying to help everyone.I started saying NO more frequently without having to excuse myself and say that i am sick.I know that i can easily have a relapse and that Dysautonomia symptoms may come back to remind me that i am not doing the right thing for myself.But now i know that it's connected to what i decide to be and do with my life.This way i feel that i control the situation and it's not controlling me anymore.I wish from the bottom of my heart that everyone finds the way not to get back their old life(because the old life could be the reason that led to all that) but to get back life in a way that it will be respectful towards their body and their soulHave a Pots-free week everyone. . Quote Link to comment Share on other sites More sharing options...
misstraci Posted December 7, 2012 Report Share Posted December 7, 2012 Elena, yay!!!! I'm so happy for you. I'm sure it was a long road and it must feel so good to have some relief and normalacy, Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 7, 2012 Report Share Posted December 7, 2012 Great news ! When I clicked on this I was wondering if you were going to mention dietary changes, espgluten. The reason the gf industry is such a big success is from stories like yours, mine and all the others who'vediscovered that we needed to eat healthier foods. Fwiw, if you're not where you think you should be healthwise, I'd look at the paleo or wahls diet. While eliminatingmy known food intolerances got rid of most of my symptoms those helped me regain some of my strength. If you haven't already, I'd get stool testing and nutritional testing.I see an integrative, both md and holistic, who's helped tremendously.I'm still couchbound quite a bit but I've been totally disabled for 23 years now. And I just discovered that I needed to treat my allergies / mast cells. Tc .. D Quote Link to comment Share on other sites More sharing options...
anna Posted December 7, 2012 Report Share Posted December 7, 2012 That is brilliant news, their is a lot to be said for the alternative medicine approach to health and wellbeing. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted December 7, 2012 Report Share Posted December 7, 2012 So happy for you Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted December 7, 2012 Report Share Posted December 7, 2012 Elena,that's fantastic news. I'm really happy for you. Alex Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 8, 2012 Report Share Posted December 8, 2012 Congratulations! Great news! Quote Link to comment Share on other sites More sharing options...
cmreber Posted December 8, 2012 Report Share Posted December 8, 2012 Yay!!!! So happy for you! Sometimes I think the best thing for people is to know there can be a light at the end of the long, dark tunnel! Quote Link to comment Share on other sites More sharing options...
corina Posted December 8, 2012 Report Share Posted December 8, 2012 Happy for you Elena! Quote Link to comment Share on other sites More sharing options...
Elenapap11 Posted December 8, 2012 Author Report Share Posted December 8, 2012 Thank you all for sharing your thoughts.Most of the times when we get better we tend to forget the forum and move on with our lives but i feel when we get better is when we should be in here to remind everyone who is struggling to find solutions that there are solutions.I remember reading a couple of stories where people got better and this is what kept me going,making me more determined(because i have to admit that quite a few times i just wanted to give up).Also i just want to say that although we are not supposed to give medical advice in the forum,in my case it was other dinet members' research and advice that helped me tremendously.More than any doctor i have visited.I cannot thank you enough(and even more the people who created the forum) Dizzysylliac i agree with you that our diet is vital in improving our health.Although i had done the tests and came out negative for celiac disease and gluten intolerance,following a gluten-free diet(80% gluten-free)helped me.I also found in which foods i had intolerance.For instance i ate tomatoes my entire life and when i quit it i immediately felt different.It turned out i was allergic to it and had no clue because i didn't have major symptoms and i couldn't connect it.I also realised that combining many foods together was bad for me.My stomach would keep the food indigested for many hours.Now i eat more simply cooked food,without spices or sauce and avoid variety in a meal.That helps me digest more easily.(that and the fact that i mash things frequently to give my stomach a break).My diet is a combination of the Wahls diet,with the one with you Blood Type,and alkaline diet.In order to combine them i had to eliminate lots of foods from each plan because i was intolerant.Also i take a spoonful of vitamin syrup after my meal to make sure i get all necessary nutrients.The homeopathy capsules helped in making it easier for me to follow this strict diet and i also felt better emotionally.Now i swear by alternative medicine and holistic approach in everything...and to think how much cortizone,antiseizure medication and other chemical substances i have taken for years.I thought that if all this couldn't help how on earth could herbs and botanology help?But apparently it does... Quote Link to comment Share on other sites More sharing options...
Relax86 Posted December 8, 2012 Report Share Posted December 8, 2012 congrats!! great news :-) Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted December 8, 2012 Report Share Posted December 8, 2012 What encouraging news. Thank you for sharing. Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted December 9, 2012 Report Share Posted December 9, 2012 What was in the capsules? Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 9, 2012 Report Share Posted December 9, 2012 Cool. I'm so happy to hear that you're feeling healthy on your regime. : ) I was shocked and angrywhen I learned how much diet can affect our health. My signature states how many of my symptoms just disappeared from changing my diet. I wasn't sure from your initial post if you were avoiding "gf" processed food. Because I'm a celiacand I attended celiac support group mtgs, I got suckered into tryingthose for 2 years before someone on another msg board told me about the paleo diet. I still fall into that trapsometimes because these foods / treats are just so tempting. Grantedsome celiacs seem ok eating all those "gf" foods, but a lot of us aren't. Studies say that they're still getting villi damage from gluten cross contamination but some just don't feel the effects. Or if they do,it's not enough to get them to stop eating these "gf" foods. Sadly, I totally understand the addiction tho. I wanted to mention that although you're feeling healthy, your food intolerancesmay indicate that you have mast cell problem. I'm new to the mc info but I've been ableto eat some of my trigger foods while on meds. Not my best idea but in my defense, it's mostly chocolate. If I had access to someone who knew a holistic routethat actually worked I'd try that. I'm seeing mixed reviews from people trying these. So far since I have anaphylaxis / throat swelling almost daily and the meds I'm taking are helping I'm sticking with drugs. If you're interested we have info on mast cells here. Tc ... D Quote Link to comment Share on other sites More sharing options...
Elenapap11 Posted December 10, 2012 Author Report Share Posted December 10, 2012 Thank you Dizzyceliac for the info.I did some blood tests for mastocytosis some months ago and my triptase levels were normal so the doctor didn't want me to do a biopsy.I know what you mean about wanting to eat chocolate and other foods you like.I never thought i'd be able to quit chocolate,coffee,pasta,chinese food etc... because i really loved my food.In September i had anaphylaxis almost on a daily basis and i had to take Medrol(methylprednisolone) and Aerius on a daily basis.In July i was on Presolon(prednisolone).I know these drugs are really effective and allow you to eat without the fear of swelling up or suffocating.However the frequent use of these raised my blood sugar and i was afraid that diabetis would be added in my list of conditions soon.I just knew that i had to make really drastic changes this time.I had to try things i had never tried before and change my entire mentality about eating.(and about many other things)I know it's still early and time will tell if this whole regime trully works but so far i had the best results from everything i've tried and feel healthier than ever.If staying healthy means eating only mash beet roots and water for the rest of my life then so be it.I just want to be able to sleep without waking up at 3am and rushing to the hospital or feeling bloated and asthmatic all day or being tired without having done anything.@Tachy Phlegming:I took a capsule of Pulsatilla(big dose),then Belladona and now i started a very small dose of Arsenicum. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 11, 2012 Report Share Posted December 11, 2012 Hi elena,Your story is very inspirational. I may even give up chocolate again. ; ) I can't do the mashed beet roots forlife tho. Lol. Fwiw, your experience is very common on the mast cell forum. I'm not trying to talkyou into anything but if you're curious just google mast cell forum and it's the first one. Most, if not all of us have gone the route you're on dietwise. The owner started this site because she'd been downthis route. I'm sorry to hear that you were having anaphylaxis daily and glad to hear that it's over for you. I'm struggling with this too. I was planning onasking my doc for something to stop this the next time I see him. So while steroids can cause other problems do you think it may have reset your system so this stopped ? I actually have chronic low bloodsugar so higher would be great. My problem may be stemming from living in a building with dirty a/c ducts. So until I can move, I'm stuck with this.The first night I slept here the air was so toxic I had to sit by an open window in order to breath. We'vecleaned the a/c which helped but the fiberglass duct work is brownish yellow and needs to go. I've beenhere 18 months which coincides with my anaphylaxis. I had no idea what I was getting into. Tc . D Quote Link to comment Share on other sites More sharing options...
Elenapap11 Posted December 12, 2012 Author Report Share Posted December 12, 2012 Dizzyceliac environment plays a major role.I get worse when it's humid and unfortunately i live in an area with increased humidity which definitely made things worse for me.I got a heating fan for every room in order to make the atmosphere inside the house more dry.If you can't move to another place then try to see what you can do to improve the air in your flat or at least in your bedroom cause when we sleep we are more vulnerable.For me cold,dry air is the ideal thing.I am curious to see how my body will respond in Spring when i usually have lots of symptoms and i am at my worst.If i am well until then the new therapy is going to be 100% successful.To answer your question i think steroids helped in controlling my allergies and asthma but at the same time they were making worse my neurological issues and dysautonomic and GI symptoms(brain fog,tachycardia/bradycardia,tremor,numbness,fatigue,constipation,acid reflux etc).About the beet roots... ...i try to see it as a pill rather than food.Every time i eat i tell myself "ok,know i'll take some selenium,and now some fiber and now magnesium".In the past i saw food.Now i see minerals and vitamins.(that's why i mentioned that i had to change my mentality).My friends help tremendously in my effort to quit chocolate.I went to a friend's birthday party the other day and she had made a separate piece of birthday cake for me which was made with fruit and yogurt...cause the rest of the cake was made with chocolate fudge.I'll check the site you're telling me and i'll keep it in mind.Another member of the forum had told me about it in the past and that's why i did the tests for mastocytosis.Although they came out negative i know i might have some kind of mast cell disorder but i am hoping that my new lifestyle may change that too.I'll keep you posted with any further change in my health.I see that you have lots of diagnosis too Dizzyceliac but i am sure there is light at the end of the tunnel.If you see my list of diagnosis you'd think that i'd never be able to have a normal life without a big box of medicines(which i used to own).But now i can manage without them...and actually feel better without them. Quote Link to comment Share on other sites More sharing options...
WyomingGal Posted December 15, 2012 Report Share Posted December 15, 2012 thanks for sharing elena!i thought i would chime in as well. I have not visited this site in quite a few months because I have been doing better as well. I do remember looking on here for positive recovery type stories in the forum and there werent too many...although many pointed out that those people are busy living their lives.I think the biggest change I made was cutting out gluten, and I am pretty strict! I don't know where I get the self control, but it might come from being absolutely scared to death of returning to my lower points. I think my body is much happier now. Also boosting my immune system has helped a lot. Less processed foods, exercise and trying to get moving everyday, even if its a 10 minute walk. I know taking meds to help with my subclinical hypothyroidism helped just about as well as cutting out gluten. When my TSH starts to creep up, I almost know its happening by an increase in some symptoms, especially my energy!Thanks for sharing and keep blazing your trail of health! Quote Link to comment Share on other sites More sharing options...
Elenapap11 Posted December 16, 2012 Author Report Share Posted December 16, 2012 Thank you Wyoming Gal! i'm really happy for you. Keep up the good work with your diet and whatever else you are doing that makes you feel better.And keep posting any helpful advice whenever you've got time for it. Quote Link to comment Share on other sites More sharing options...
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