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Daphne1

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Hi everyone,

My name is Daphne, i'm 18 years old and I live in the Netherlands. I'm having health problems since I was 8 years old, I had almost every day a headache, often pain in my ankles and knees and often hot flushes. Gradually I was getting more fatigue, more problems with sports and more symptoms. Eventuelly I was diagnosed with ME/cfs 2 years ago, because my GP just couldn't find anything else that explained my symptoms. One year ago I also got the diagnose 'sinustachycardia and POTS'. I was treated with Verapamil for the sinustachycardia but I stopped with that because I didn't feel better. The cardiologist never did more tests for the POTS and he never gives me medicines for it. Now I'm following a treatment for my ME/cfs in Belgium by professor de Meirleir, but it makes me only much worse. Before I started with the treatment I already laid in my bed each day, but sometimes I could sit in the livingroom for a while and about once a week I could do something outdoors. But now I'm fully bedbound and can't do anything anymore. The professor says that POTS is just a secondary result of ME/cfs and he don't want to hear anything about my heart-troubles. But I think that I maybe always have had POTS and not ME/cfs. Soon I'll make an appointment by dr. Lenders, I read at DINET that he is a POTS-specialist in the netherlands.

My main symptom is my heart rate. When I'm having a bad day my hr is around 100 bpm when I'm lying and goes up to 170 bpm within one minute while I'm standing and when I lie down again it drops to 55 bpm. When I'm having a good day, my hr is between 80 and 100bpm when I'm lying, and when I'm standing it is between 120 and 150 bpm.

Other symptoms that I have:

fatigue, lightheadedness, near fainting, palpitations, shortness of breath, excessive sweating, nausea (sometimes vomiting), blurred vision, tunnel vision, dizziness, exercise intolerance, blood pooling in legs, intolerance to heat, cold hands and feet, feeling cold all over, cognitive impairment, hyperventilation, polydipsia (I drink about 4 liters water per day), foodintolerances(diary, sugar, fructose and wheat), ear, gut and bladder inflammation, malaise, headaches, pain in legs, hypoglycemia, abdominal pain, chestpain and difficulties to fall asleep.

I hope that I'll find a lot of recognition on this forum and that I can learn of your stories and experiences.

Daphne

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Welcome to our club Daphne! I'm sorry to read all the medical issues you're having at the age of 18. I guess my one advise to you is try not get discouraged and keep fighting for your health. As you will soon learn from reading this chat forum, most of us here took several doctors and several years to get our dx's. Keep reading and you will learn alot from this forum and I wish you the best in getting help for your health.

Maggie

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hi daphne

im new here too.

your symptoms sound very much like p.o.t.s. i hope you have some family or friends around you to fight your corner. you must keep insisting that something is wrong, because there is.

it took me two years to get the diagnoses. in that time i too was diagnosed with m.e/cfs. my heart rate was similiar to yours. 80 laying down and it went up to 185 standing, and then they finally done something. although im not better, i feel alot better than i did in may when my body was in an awful state.

i really hope you get the help you need. you need to be persistant with docs, espically when they think that there is nothing wrong.

welcome to dinet.

emma.

x

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Hi Daphne!

Welcome to the forum. I am sorry for your suffering, but I hope that you will find support and guidance here on the forum!

~ Broken_Shell <_<

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Hi Daphne. I'm sorry that you're struggling so. Know that you're in good company here! We definitely understand coping with multiple issues (not to mention all sorts of diagnoses.)

I'm glad you found us. Welcome!

Amy

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Hi Daphne!

Your symptoms sound almost exactly the same as mine. I have POTS and CFS also, and it took forever to get properly diagnosed. I'm sorry to hear that you are having trouble with doctors and treatment, but hopefully the specialist you mentioned has a better understanding and some better treatment options for you. I have seen 2 specialists here in the U.S. and it made a huge difference.

Welcome to the group!

Sarah

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Hi Daphne!

Your symptoms sound almost exactly the same as mine. I have POTS and CFS also, and it took forever to get properly diagnosed. I'm sorry to hear that you are having trouble with doctors and treatment, but hopefully the specialist you mentioned has a better understanding and some better treatment options for you. I have seen 2 specialists here in the U.S. and it made a huge difference.

Welcome to the group!

Sarah

Hi sarah, I live in chandler too! This was the first time I've seen you post. Welcome to forum. There are quite a few of us here in arizona.

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welcome daphne!

its good to hear that you will be seeing a pots specialist. what kind of treatment does dr. demerlier have you on? im just wondering if its something that aggravates pots so that might be making you worse.

<_<

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hi daphne! welcome at the forum, although i'm sorry you have reason to be here. i am glad that you found the courage to start your own topic here on ppforum so that you get the chance to get to know all of us. there are a lot of different stories here which gives you the opportunity to learn from other experiences! as you're WAY to young to be in bed all day i hope you'll find people to help you out. also, i do want to stress that being in bed isn't the best of help. whenever you can you could try to be in bed SEATED to help your body get used to be in an upright position. you could start very slowly by just raising your bed head a little (can you put a pillow under your mattress?). it is recommended to sleep with your head raised a little as well (for me that is a problem but maybe it could help you?).

i have seen a prof in the city where you live and was diagnosed by him so in my opinion there is no reason to travel all the way to belgium. there is a VERY good cardio (also nearby will give you the detail in a more private setting) who first thought of pots before sending me to the prof (neuro).

drinking sportsdrinks (for me aquarius helps best) helped me a lot. at the age of 18 you need to have a goal in life (and yes at 46 you still need that <_< ) so that you get the courage to start working on getting better bit by bit. you may not come to the point of being totally cured (i won't reacht that point either) BUT i do hope you could get well enough to get some kind of life back.

i will email you as soon as i can with more information on docs and possible treatments!

take care

corina :P

oh and btw i live very close to you so i even could come visit you when needed/wanted!

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Hi Daphne~

Welcome to our Forum! I hope you find a lot of help, info and support here. There's almost always someone who can relate to your symptoms and what you're going through. We'll enjoy getting to know you better.

Cheers,

Jana

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Thank you so much for your warm welcome and all your tips, I really appreciate that!

ana_22: In the topic 'Cfs and POTS' you can read exactly wich treatment i'm following. It's mainly antibiotic and probiotics. And I'm almost sure that it is the treatment that is making me worse. So I think I will stop with that treatment very soon.

corina: Yes I'm still trying to do some kind of excercising, it's not much, but better dan nothing I think;) I didn't know that it's good to raise your head a little, I'm gonna try that! Thanks!

Best wishes to all,

Daphne

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