Elenapap11

Thank you Erik.I hope Santa will visit you soon too.(with reindeers and all;-)) Tammy my iron was a little low lately but i haven't always been anemic.However, maybe this is one more reason for feeling better when i eat meat.I agree with you that we all have different dietary needs and we need to try out various regimes until we find the best one for ouselves.But as Ramakentesh pointed out that alone may not provide a solution.Even in my case it may be a coincidence...i cannot be sure.(still.i will keep eating red meat just in case...) Have a nice day everyone!

hi everyone.Although i'm still waiting for the results of my tests,i have to admit that i've been feeling a lot better for more than 10days now.I don' wake up at night,no tachycardia,no fatigue.I only have stomach irritation and shortness of breath but that's bearable and it only lasts for a couple of minutes after my meals.Now that the restless nights of intense crises are gone i sleep 10 hours a day!!I feel like my body is trying to recharge its batteries.I cannot describe the feeling of waking up feeling well.I had forgotten what it's like. Anyway just to let you know the only thing i've changed is my diet.I stopped eating any kind of sweet and i started eating red meat every day.No pasta or cheese.Maybe it's a coincidence but maybe meat has helped me.Generally i don't like meat very much and i never ate adequate amounts of it.My mother-in-law visited me for a couple of days and she insisted that i eat more meat.At first i only ate it because i didn't want to insult her but after three days i actually started feeling better.Now i make sure that i eat beef or stake every day.I also stopped eating sweet foods(anything that contains sugar).I just make sure that i eat enough salt and drink plenty of water.(like most of us here) I really needed a break from POTS because i had severe symptoms every day for 70 days.I don't care if it comes back.I'm just happy that i could have a break and get some sleep.(and if i m lucky enough i can stay like that during the Christmas Holiday:-))))

I think i can relate to that Bluesman.It's one of my symptoms when i don't feel well.I sometimes wonder if i am loosing it but i try to calm myself down by saying that it's just a symptom like the rest.Have you done an EEG?if you did was it normal?I'm asking because my neurologist told me that when i get stomach trouble and i get this feeling it might be an 'epileptic aura'.Do you also get shortness of breath,very cold hands and feet? I hope you'll get stronger and find the strength to carry on with your studies.

Hi Tessie.I had spasms sometimes but i wouldn't call them severe.It is scary though when it happens!Have you been checked for epilepsy?Or have recently been vaccinated for the flu?I am having tests at the moment to see if its epilepsy.Doctors still haven't decided what it is.They just said that they might be autonomic seizures. I hope you're feeling better.Take care

I am thankful for my family and friends,for the good days where i can stand up and feel well,for the fact that God is always there for me in times of need,and this year i am thankful for having met so many wonderful people in this forum.I wish everyone a happy Thanksgiving.Thank you all for your support and invaluable advice.It means the world to me!God bless you all. Elena

Hi Niki.I'm sorry to hear that you were also diagnosed with epilepsy.The good news is that meds have helped you.I am feeling better these four days and i haven't taken any medication.I'm just resting and sleeping a lot.I am waiting for some test results and this week i will finally do the sleep study so i'll let you know if i have any news.I wanted to ask you a couple of questions.What type of seizures did you have?Did the POTS symptoms go away when you started antiepileptic treatment?I am very resistant to the idea of taking meds for epilepsy.I'm afraid of the side effects and the possibility of making pots symptoms worse. Have a wonderful symptom-free day!

I teach English as a foreign language in a language school and when i am writing on the board and i make a spelling mistake i feel very embarassed-especially with adult groups who are more observative and they'll tell me.Of-course i cannot explain that i have POTS and i occassionally get brain fog so i usually say i m just tired.I was always excellent in writing and it's so frustrating to make ridiculous mistakes.Once i wrote a word backwards and an 11 year old girl asked me if i had dyslexia because she had a dyslexic friend who did the same mistake I laugh about it now but the truth is that i am worried it might affect the quality of my work at some point.

Shannon three years ago after a gastroscopy i was diagnosed with gastroesophagic reflux and acid reflux.Basically whatever i ate would come up my throat and even if i hadn't eaten anything i could feel my stomach's acids burning my throat.Everytime i woke up in the morning i would have an awful taste in my mouth and a sorethroat.I went on a special diet and i was taking Nexium for five months.Occassionaly i would wake up at night with heartburn and increased heart rate.(i would go up to 120 beats per minute)I went to my doctor again because despite taking meds and following his tips i wasn't getting any better.He said that i was too stressed for nothing and that i should not think about it too much. The symptoms gradually became more frequent and after a fainting episode i was rushed in hospital where after a second gastroscopy they told me that i also had hiatal hernia.I kept asking the doctor if all that can cause palpitations,tremor,shortness of breath,fatigue and faintings.He told me that i was too stressed because of my stomach problems....and i believed him.But of course my problems didn't go away and the second time i had a fainting episode and severe POTS symptoms the doctor told me that i might have NCS.i had a tilt test which was positive and i got a second diagnosis from another hospital.The doctors there told me i had POTS. For the last two years i ve had all Dysautonomic symptoms that exist including acid reflux.I wasn't told by the doctor that acid reflux is a POTS symptom but reading many stories in this forum i realised that many POTS patients have it. My advice is to have a thorough check up to get a proper diagnosis and most of all to change your eating habits which will help you a lot more that medicines.For instance chocolates and spicy foods are strictly forbidden for me. I understand how frustrating it is not to have a POTS specialist.I have been having the same problem.Inform your GP as much as you can and don't take everything they say for granted.Educate yourself well about it and educate your doctor.That's what i do at the moment. Get well soon. Elena

Oh Maisie you've described exactly how i feel!I've read other people's stories so i know that it's a POTS symptom.I keep telling that to myself...it's just that recently i've been told by a doctor that what i am having is epileptic seizures and he also told me that i need to take meds for it otherwise i'm in danger of having a fatal seizure(!!)Of-course two other doctors ruled out that possibility and told me to keep taking my beta blocker.But you know how it is.You start wondering:'What if he is right?what if i need antiepileptic treatment?' Sometimes i've even wondered if i have a brain tumour which was not seen in my MRI.I'm sorry if i sound like a drama queen.I'm usually brave and optimistic.I don't discuss my worries with my family because they're scared enough already so here it's the only place where i can honestly say how i feel and what my fears are. Thanks for listening (and replying ofcourse)

I woke up again last night around 3am and i felt like fainting.My heart felt weak and i couldn't move my legs and hands.I tried to speak to my fiance who was asleep but the words wouldn't come out.It was really hard to concentrate and when i tried to stretch my hand to get my bottle of water my hand felt heavy.When my fiance woke up he was asking me if i was alright and i could barely say i am ok.I felt irritated and when i was trying to say something i was annoyed by the fact that i had to think hard to come up with the words.It took me an hour to feel a bit better.I've had such crisis before but i was sweating and shivering which i didn't yesterday.Yesterday i felt like something was wrong with my head.It was very scary. Has anyone experienced that?I am thinking of having a new MRI to see if there is something else going on.

Hi Erica.I've also had POTS for the last two years.Shortness of breath is one of the first symptoms that appeared.It always led to increase of heart rate and i felt like fainting.I have found out that if i don't allow myself to get scared i soon feel better.The first year i was so afraid that i'll stop breathing and that i might suffocate that i made it even worse.Now that i know it's part of my POTS crisis i am dealing better with it.Some things i do are the following: 1.I drink small sips of water 2.i lie down with my feet up 3.I have someone to rub my back and press me on my upper spine(at the height of the lungs) which helps me take deeper breaths. Try to monitor your blood pressure and heart rate when you get shortness of breath.If you have low blood pressure,lying down will definitely help you.Remember that stress will worsen your symptoms so try to tell yourself that it's just another crisis and it will go away. I hope you find the answers you are looking for soon.Take care Elena p.s.Have you got any other health problems?(like indigestion,constipation,mitral valve prolapse etc)Make sure you do a thorough check up to rule out any other health problem which can cause shortness of breath.

Dear Amy,i know how you feel!!I'm so frustrated whenever i am told that something new has come up...and it's always something that stays with me for a long long time.You have every right to complain and we're here for moral support.I hope you'll find the strength to deal with that too.Sending you a big hug of encouragement. Take care Elena

Dear Amy,i know how you feel!!I'm so frustrated whenever i am told that something new has come up...and it's always something that stays with me for a long long time.You have every right to complain and we're here for moral support.I hope you'll find the strength to deal with that too.Sending you a big hug of encouragement. Take care Elena

Very interesting article.I have hiatal hernia also.could that be the reason that triggers everything else?I'll email it to my doctor to see what he thinks about it.

My dear Maisy how i feel for you!The first time i got severe symptoms-two years ago-they didn't even know i had POTS.I spent almost two months in my house and i couldn't stop crying.All the doctors thought i was depressed and that it's all in my head...and i felt like dying.I thought my life was over.At least you know what it is and you should also tell yourself that as suddenly as you came to this situation you'll wake up one day and start feeling better.Are you taking any meds?Maybe you are not getting the right treatment.When i was taking Zanax i was bedridden but when is stopped it i started getting better. Stress makes you worse so try to do things to relax...I listen to music,watch my favourite movies and i have seen that reflexology helps me too sometimes.(it's like a foot massage but they press certain parts of the foot which communicate with different organs of the body)Try out many things and whatever helps you do it as often as you can.Oh!and make sure to be surrounded by people who support you because you need all the positive energy you can get.Don't be bothered with people who upset you. I'll be praying for you to get better. Elena

Thank you Patty.It's nice to know that people are sending positive energy.God bless you!

Jan there is no POTS doctor here in Greece.The one i saw on Monday is a neurologist who claims to have worked with dysautonomic patients.He is specializing in MS and has done significant discoveries in that field.He also deals with epilepsy.However i wasn't convinced about his knowledge in dysautonomia.The other doctor is a famous pathologist in Athens who cooperates with a neurologist and pulmonary doctor to solve difficult pathological problems.He cooperates with a lab in Germany to run tests that we are not able to do here in Greece.He is also researching on preventative medicine and more natural methods of curing illnesses.I've lost count of how many doctors i have seen and each one is focusing on a different symptom but noone is looking at the whole picture.The one i saw yesterday gained my trust but i don't want to be overoptimistic.we'll see...

I got a second opinion yesterday.The doctor told me to do a 24 hour eeg which i will take at home-i'll walk around with cables on my head!-and he also asked me to check my thyroid again.He also gave me some tubes where i will have to give a sample of saliva and they will send it to a laboratory in Germany which will check glutamate,catecholamines and some other things which i cannot remember.When we get back all the results we will decide upon treatment. About the seizures,i had taken Depakin and Lamictal 9 years ago when i had two grand mal seizures but i stopped the medication because i also got bad migraines and acne.I was twenty years old then.I haven't had any grand mal seizure ever since and last years eeg was pretty normal.I m also very sceptical about taking antiepileptic treatment because in my case change of lifestyle helped me improve.Ofcourse now i do have problems but i think it is reasonable since dysautonomia leaves me sleepless,i cannot eat properly and i m exhausted all day.If they decide that i need antiepileptic drugs i might seek advice from a homeopathist.Maybe they can give me a remedy which is not as harmful as Depakin.Has anyone ever tried homeopathy? Thank you all for your wishes.

Now this is indeed good news.I hope that you're one of these people who have woken up and miraculously everything is gone.Make sure to keep yourself in a good mood and avoid stress at any cost.I know from personal experience that stress can get you back to zero.Have a wondeful day!

Patty can i ask you a question?how did you react in antiepileptic treatment.were there any side-effects?did you get better or worse after taking it?

Thank you all so much for the information!I m getting a second opinion today so i will let you know when i have something new.A big big hug for all of you out there.I cannot thank you enough for the moral support.

No i didn't feel a thing.I had two major seizures 9 years ago where i collapsed and i was unconscious for at least 3 minutes but it was during a stressful period and my eeg was not as bad as it is now.I think i would have understood it if it was an epileptic seizure since i've had two before.I felt fine during the eeg except from fatigue and difficulty in breathing.I was diagnosed with Dysautonomia from two major hospitals.I have all the symptoms of dysautonomia and i wonder if my POTS and sleep deprivation has caused the abnormal activity in the EEG.Or is it vice versa?I don't know.I'll get a second opinion tomorrow but i m curious to know if any of us in this forum has abnormal EEG.

I had an EEG today and i saw a neurologist who was on the list of Dysautonomia doctors in Greece. He told me that i had three seizures during the test(!!!)and that i need antiepileptic treatment.He also said that maybe my POTS crisis and all the symptoms are not because of Dysautonomia but because i have epilepsy.If i start antiepileptic treatment i have to stop my beta blockers because he said that Zanax,Ladose and all this type of drugs make the problem worse! What on earth am i going to do?I was supposed to see this doctor today in order to get tips about my POTS and he gave me a completely different picture.He seemed pretty confident about his diagnosis.Has anyone ever done an EEG and did it show abnormal brain activity?He told me that memory problems,distraction and breathing problems may be related to the seizures.I m still waiting to be called for a sleep study(to check for apnea and other disorders)but until then what?He said that i urgently need to start treatment.

Thank you for the update Rachel.I believe that having support is what makes a difference in our lives.I have a family and a partner that are there for me andi know that if i have a baby i will not be alone.However because in the past i was the one who stood by everyone else-always the strong one and very independent-it is really difficult to adjust to this new reality.I sometimes feel guilty for not being the partner,daughter or sister that i used to be. I have postponed my wedding plans because i m not sure that i'll be able to walk down the aisle and stand up during the ceremony. I have abandoned my plans for an academic career.I m not ready to abandon the plan of becoming a mother but i don't know if i should.I suppose time will tell...Having said all that,i still feel blessed for the family that i have been given and for the people i have met in this forum.The information and advice you have all given me here is invaluable....not to mention the psychological support.I truly wish the best for you all!

Rachel thank you for the article.i read the statistics which are quite enlightening.I wish you an easy delivery and all the best for the new member of your family. MomtoGiuliana i m sorry to hear that your pregnacy was such a traumatic experience. I'm sure that the baby compensated you for all the ordeal.I would like to ask you another question though.Were you working while you were pregnant?And how bad was your POTS before you conceived the baby?