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About Elenapap11

  • Birthday 11/11/1979

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  1. I had two seizures like the ones you described too.They were both within a 6 month period(7 years before i got diagnosed with POTS)and they were both grand mal.I remember having excruciating migraines afterwards and ofcourse i had complete memory loss for more than 3 minutes.I was taken to hospital both times and was diagnosed with epilepsy as one EEG showed abnormal activity but never had another similar crisis since then.Fourteen years later,I now believe that it was associated with dysautonomia and my neurologist said the same but it is really difficult to say what actually causes a seizure as there are many reasons why it can happen.I hope you don't get any more of these and that you'll find answers in Vanderbilt.I've heard really good things about it too. I wish you all the best.
  2. That all sounds familiar.I would even wake up in the middle of the night feeling breathless,bloated,nauseous and ocassionally numb in the face or limbs.During those periods i felt that my stomach was full for hours and that i couldn't digest anything.The doctor told me it was acid reflux and indeed it was as i had a gastroscopy and found out i had hietal hernia and inflamed oesophagus.Change of dietary habits and medication helped but in the long term what helped is to take out of my diet forever certain foods and also meditation before i go to sleep at night(there are many nice videos on YOUTUBE with soothing music and nice pics to help you relax-which also relaxes the stomach)Also for trapped air in stomach and bowel some herbal teas help.I drank anise herbal tea which helped me.Overall though it is what you eat that determines how soon you'll get rid of that new symptom. I m sorry you had a bad night.I hope you are feeling better today
  3. Thank you JuneFlower!I will mention all that you told me to my OB on Tuesday.Very helpful information.
  4. Thank you all for your sharing your views and personal experiences.JuneFlower thank you for the professional input.You really made me see things very differently.Perhaps i should just try for natural and if it's not meant to be i guess i will find out when the time comes.Giuliana i will try to find studies and give them to my OB.Rosey and Aimes thank you for your wishes.I'll keep you posted. Regarding epidural and low blood pressure...how low are we talking about?Mine is 45/85 to 50/90 maximum at the moment.When i eat salt it gets back to normal for a couple of hours but drops down again.Can it get any lower than that without passing out?
  5. Thank you BigskyFam!You had 3 c-sections.so how long did it take you to recover and did it exacerbate your symptoms? Coloreblood congratulations!We are very close.My due date is 28 June.I suppose yours is around those days too...I haven't seen any MFM and to be honest i don't know if there is one where i live so i just have to rely on my other doctors.I am going to see a cardiologist in a couple of weeks too so i will ask him what he thinks too and let you know.As for what's best for the baby i have heard various opinion.Some suggest that it's best for the baby to come out from the birth canal in order to strengthen its respiratory system and others told me that with ceasarian we will avoid complications that will put a strain on the baby.My biggest fear is going for a vaginal birth and then if something goes wrong i ll be rushed in an operating room for an emergency c-section with general anesthesia...and i really don't want this.If i am to do a c-section i'd like to be awake when my baby comes out.
  6. Hi everyone!It has been a long time since i last visited the forum so i have missed quite a lot of what is going on here but i always think about my big family over here who have supported me through some very rough years of my life since i was diagnosed with dysautonomia.For those of you who have been in this forum for a while you might remember that i was doing much better over the last 18 months and i was thinking of having a baby.Well,now i am in week 23 of my pregnacy and relieved to say that POTS and my other health issues have not gotten worse during this time(though i did have 2 mild POTS crises and i ocassionally get tachycardia and low blood pressure-but not as serious as it used to be and i recover very quickly without feeling exhausted). Anyway,i am facing a dillema these days and i would like your opinion.My gynecologist wants me to try for a natural birth as according to him my pregnacy so far has been great but my G.P. who has known me for many years and knows my issues(GERD,Epilepsy,Asthma and POTS)said that if she were me she would opt for a c-section to minimise the risks.The thing is that my gynecologist only knows me for 6 months now and though he is informed of all my problems he has seen me at my best so he keeps telling me that i look perfectly healthy to him and sees no reason in not having a natural birth(with epidural).Do you think he is right or is it just that he might not be aware of what POTS is all about?I am afraid that if i have a long and painful delivery i might soon get back to bedridden state and daily crisis and i really don't want this(especially for the first months of my baby's arrival).Plus,i am 34 years old and this is my first baby so i have more chances of having complications during labor(according to articles i have read. How have you given birth to your children?Which of the two options is best for a woman with POTS?i am really looking forward to your answers because i am troubled and feel that once again doctors are confusing me rather than giving me answers.(maybe there are no answers to this question but i hope you can help me there) Thank you in advance!
  7. Perhaps instead of going back to the beta blocker you could allow yourself sometime to rest and do stuff that will reprogram your body back to normal functions.You could take a leave from work or find someone to do the housework for you for a while and just focus on relaxing your body and soul.I have had remissions and they always came along with a stressful event or flu or just being same old me(being a multitasker and trying to be perfect in everything).If you can't make some temporary changes to relax and get rid of pots symptoms,i suppose beta-blockers are a solution. But in the long term it's all about how you use your energy so if you overdo it,remissions are inevitable.I've learned this the hard way. Anyway,discuss it with your doctor and decide what is best for you.I hope you get rid of the symptoms very soon.Just remember that if you are back to this it means that you need to give yourself a break from anything that tires you or stesses you.That will determine how long it will last.
  8. 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.
  9. I bought a coffee substitute from a health store.It's made from Guarana and at first i thought it was awful but now i am used to it.I also had to stop it cold turkey and the first few days i was sleepy and also suffered from headaches and constipation.Taking vitamins and magnesium helped me reduce the withdrawal symptoms.After 10 days i was fine.Now i drink one day skimmed milk with a teaspoon of honey and the other the guarana coffee alternative.
  10. 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.
  11. I had the same symptoms too.I would wake up feeling like this or if i was at work,or even when i was sitted.I wasn't taking clonodine but as Kimberly said this is a dysautonomia thing.My episodes were so bad that i frequently was numb in the face,tongue,spine or limbs.I found it hard to talk and felt detached from the environment.I had several eeg's and the neurologists thought it was some kind of epileptic seizure(my eeg's showed abnormal waves)but even after antiepileptic treatment i still had the symptoms.
  12. Congratulations Jangle.I am sure that you'll make a great doctor one day as you've been on the other side and this is experience that no medical school can offer.
  13. 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.
  14. 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...
  15. 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. .
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