Elenapap11

Kimbell you have a point so i added sleep apnea to the list. Arizona i did the poll because half of these are conditions i have been diagnosed with and the other half are things that i suspect i might have. In a recent conversation with a neurologist he suggested that everything i have are separate health issues-which i cannot accept because i keep reading in the forum about identical cases like mine-and that i should take medication for each one indivudually.But i keep asking myself:what if all these disappeared one day because Dysautonomia was gone miraculously?I mean does it make sense that after the onset of POTS i started getting all these diagnosis?And does it make sense to take meds for asthma,allergies,epilepsy,GERD,(now i have to watch out for diabetes because of high blood sugar-which by the way noone has in my family and i always had it normal).I believe that it is wiser to focus on fixing or reprogramming the autonomous nervous system rather that treat the symptoms. For me adding prescriptions to my list is like trying to treat apendicitis with paracetamol.Yes it stops the pain for a while but in the long term it will become a life threatening situation.And then you go back to the hospital and the doctor has a new diagnosis except from abdominal pain.'Miss X your recent check up showed peritonitis'.But of course this is a different problem for the doctors. So here i am creating polls that my doctors should have done for me(since they would probably make them better than me)and trying to get answers.Besides the only rational and helpful answers i have received since i was diagnosed with POTS were from the members of this forum. P.S.Sorry for the long post.I am a bit whinny today because of POTS and allergy symptoms that have worsened.

Thank you everyone for replying to this topic.I apologise for omitting some conditions(such as sleep apnea).The aim of the poll is to see the relation of Dysautonomia with some particular conditions and this is the reason why many other health conditions are absent from the list.Have a nice potsfree day everyone.

One more poll for the members of the forum.Thank you once again for taking the time to vote.

I also have digestion issues.Green salads and raw vegetables make me bloated and it may last for more than 24 hours.Libby i feel the food too when i burp but i have noticed that when i follow a strict diet i feel a lot better even with food that can give me horrible symptoms(set meals with portions that a 4 year old would eat and have dinner before 8pm)When you mentioned the waffle thing i remembered a chocolate fudge cake i had at T.G.I Fridays two years ago which left me sleepless all night with pain,nausea,sweating and tachycardia.I swore i'd never eat chocolate again in my life....I never ate chocolate fudge since then. My doctor suggested that i take a walk after eating to help digestion but because in POTS this can be difficult just make sure you don't lie down after eating.

I know that many people in this forum started having POTS symptoms after surgery.I have also noticed that a great number of us have scoliosis and i am wondering if this can be the main cause for autonomic syndromes.Has any of you discussed this with your doctor?If so, how can it be helped when problems occur from a nerve in the spine? Thank you in advance for your time to answer the poll.

All you describe are sooo familiar to me.I spend so many nights at the ER and then so many days trying to figure out why it happened.I even kept a notebook trying to see patterns that may lead to the solution.And so much cortizone and steroids and iv fluids...I can tell you Becca you have every right to whine.So feel free to do it.After all we have so many restrictions with these odd health issues that the last thing we need is to repress our frustration. I hope you are feeling better today.

I have already searched online and read various articles.I'll see what other people have written here.Thank you for the tip about magnesium.The doctor prescribed magnesium citrate(solgar) in order to have a better absorption of D3.I am mostly worried about any gastrointestinal side effects as i have GERD and IBS and both are at a peak at the moment because i had to take prednisolone for a month.

Has any of you been diagnosed with epilepsy?or had an EEG?i had the same problem with lights.Especially flashing lights.I felt nausea,headache and sometimes breathing difficulty.My doctor said it might be light-sensitive epilepsy.

I had a EEG last week which again showed patterns of epilepsy.However my symptoms resemble more Pots.My doctor suggested that i take vitamin D3,MAGNESIUM and Bcomplex vitamins.Has anyone ever taken them?Have they helped or caused any side effects?Also what timeof the day is the best to take them?My doctor had a different opinion from my pharmacist.

i've been to the ER 9 times in the past 7 months.Unfortunately the only thing they did was put me in a mask with Pulmicort and Betrovent for my asthma.They could do nothing else for my other symptoms(bloating,trembling,feeling like fainting)They just advised me to see my doctor and ofcourse in the few times i mentioned dysautonomia they ignored me and send me home.So every time i go i tell them the symptoms and that i have asthma,GERD and epilepsy.They take epilepsy more seriously.

I take Atrovent inhaler when i have breathing problems and it seems to be helping.I try to use it only when i feel really bad because i am afraid it may cause other symptoms(like tachycardia).I also take Seretide Diskus because i had a bronchitis recently but for me Atrovent is the best inhaler i have used because it has immediate results and so far no symptoms.You need to consult your doctor about it though before taking anything.

I get this sensation too.Not every night but there are nights when i try to sleep and i wake up four and five times because of that.It happens a lot during periods that i m very tired or sick.I asked my neurologist about it and he said that it is a sign of fatigue and i shouldn't be worried.I am not worried but still it is very annoying because at the point when i fall asleep i wake up suddenly.Still i suggest you discuss this with your doctor.Have you done any EEG?If so,what was your result?

Spinny C.What you said about temperature is also true for me.I feel my entire body aching when i get 99.I usually get the 'you're a hypohondriac look' when i tell them .This evening i had 102.2 and after 4 hours i just couldn't take it any more so i went to the hospital.The doctor put me in oxygen mask immediately and gave me antibiotics as my viral infection has turned into a severe bronchitis.After 2 hours i started regaining my strength and now i feel so much better.I just want to fax my diagnosis to the silly doctor i visited in another hospital yesterday and he told me that i shouldn't have bothered come cause it's just a common cold.24 hours later it was not so common. Anyway,i m just thankful it all turned out well this time. Thank you for your reply Spinny C.I hope you are well now.

Hi everyone. It's been a long time since i posted something because i was enjoying a full year without dysautonomia symptoms(not serious ones at least).In the last two months i started waking up fatigued and had ibs symptoms and tachychardia.I new i was having a relapse but my homeopathist helped me keep it stable.However five days ago i started having common cold symptoms and as a result my body is in a mess.The trouble is that it is not going away and i have had blocked nose,migraines,fever(not too high but doesn't come down no matter what i do)and breathing problems.On top of that it has triggered my gastrointestinal problems and i have bloating and acid reflux(and i can barely eat anything)Also when i lie down or try to get some sleep i choke because of the phlegm.I barely sleep 4-5 hours a day. I want to go to the hospital but i am afraid that i m going to receive the same ignorant attitude that i did last time i went.The doctors don't seem to understand that for me it's not just a cold and i need to get rid of it because the more i am sick the worse it gets for my dysautonomia crises.I'm so drained physically and emotionally....how can i make them understand that "being patient for a few more days and we'll see" is not good enough for me?Do i have to reach the stage where this will turn into pneumonia in order to receive some proper attention?Or should i just go to the hospital and just fight in order to have them do their job?I don't know what to do....any ideas? Do you inform the doctors that you suffer from dysautonomia when they treat you?And if you do how do they respond? P.s.how do you boost your immune system during a flu or a viral infection?(especially if you suffer from GERD,IBS,asthma and all the dysautonomic symptoms at the same time?)

Thank you all for your replies.Mighty Mouse next time i see him i will give him the address of the website.Some doctors are just so obnoxious.Instead of giving me any kind of advice he started lecturing me about how patients overreact and try to play doctor.(!!!)Obviously he was clueless.

I was discussing with a doctor yesterday and when i told him that i have dysautonomia he said that is not an accepted medical term and that it is not accepted in the medical dictionary.Is that true or was he just another ignorant doctor?I told him that in the U.S.A there are many people who are diagnosed with it-and i was too here in Greece by another doctor-but he kept saying that there is no scientific proof that dysautonomia is a health problem on its own.Is dysautonomia the correct medical term for what we have?When you fill in a health record do you mention dysautonomia or do you refer to it as vasovagal syncope/CFS/or something else?

Hi Typewriter girl.I don't take the same drugs that you do but i have been discussing the same issue with my doctors here in Greece.Both of them(neurologist and GP) told me that there is no simple answer to this question.For example when i get POTS crisis i can't breathe very well and the fact that i am not getting enough oxygen could be bad for the baby(they said it could cause brain damage or even be fatal for the baby).For me they said it is best to wean off meds gradually(3months before i try)but if they see deterioration i may have to take my meds even during pregnacy as not taking them could be more dangerous for the baby.In other words we are taking a risk either way. I wasn't happy with the answer they gave me but they told me that there have been many women who had been taking antidepressants,beta blockers and all sorts of meds and still had healthy babies. Of-course i am also curious to see what other women in the forum did when they were trying to have a baby.I've been thinking of having a baby for a while but i am so scared of having to make such difficult decisions.

My dear Ericka.I just read your latest posts-i had no idea you were going through all that lately.If there is anything i can do to help(like ask doctors here in Greece for your issues or anything else)please let me know.For now i am sending you all my love and positive thoughts for getting better. You are a fighter as we all are- so concentrate on winning this battle too.I hope we'll soon read about your getting better Lots of love Elena

I don't have any questions this time.I just wanted to let all my friends and supporters in dinet know that i am a lot better these days.I go out more often,i can walk for 10 minutes without fainting symptoms,i can sleep at night without waking up feeling like i'm having a heart attack or stoke.God knows how hard the last 6 months have been.Since i started Trileptal i've seen significant improvement.It's been a month now that i stopped having pots crisis and i hope that it's not a coincidence.I guess time will tell...I just wanted to share my news with all of you because you have all supported me so much and only you can understand the importance of being able to spend a day without pots symptoms. i send you all a big thank you hug and wish from the bottom of my heart that you get many pots-free days too. Elena p.s.i don't write that often in the forum nowadays because i need to take advantage of my good days and go out and do stuff i haven't done for a long time.i don't know how long it will last but i want to enjoy every single moment.

Hi Erica.I wish there was a magic wand to turn all those idiots into frogs....or even better give them POTS for a couple of months.Then perhaps they would finally realise what we're going through.I've seen so many doctors and talked to so many people but noone understands.They start all this psychological nonsense about psychosomatic stress and changing your lifestyle.Obviously for most people Dysautonomia is still unknown and until the day that everyone is aware we'll have to give everyday fights with doctors,welfare,friends etc. If you are strong enough to deal with POTS I am sure you can find the strength to claim your rights. Big hug of encouragement from Greece. Elena

Unfortunately i know exactly how you feel.I truly hope and pray that you finally get some answers....and a break from the pain and all those things that make life so hard!Good luck with the result.Hang in there and let us know what happens. take care

I am considering seeing a specialist abroad because so far i haven't had any satisfactory answers about my health problems.I need a good neurologist and dysautonomia specialist.Since the U.S. is too far for me(and i can't travel long distances at the moment) i am thinking of U.K. Does anyone know a good doctor who has helped patients with POTS?i've read about dr.Mathias in the forum.I would appreciate any suggestions.Thank you.

The first seizure i had i don't even remember.I was doing a presentation at the university lecture theatre.Next thing i remember was the paramedic nurses over my head.I was later told that i dropped on the floor,had convulsions all over my body and turned blue.Then i was asleep for a few minutes and woke up when the paramedic came to take me to the hospital.I had a similar episode six months later which was again in a big theatre with lots of people.After that i didn't have any problem for ten years.Now i don't even realise that i am having a seizure.I am always conscious,i have no convulsions and it feel like a panic attack rather than a seizure.It starts with shortness of breath,icy cold hands and feet,numbness in fingers,toes and sometimes head,feeling of fainting,palpitations.Before it stops i sometimes feel lightheaded,get a tremor,unable to concentrate or talk.I feel frustrated and sometimes i cry.Then i am exhausted and have a headache.The doctor mentioned autonomic seizures but he also said that it may be partial epilepsy.They are not sure.The only thing that made them realise i need meds is the eeg which was not very normal.

I had taken Lamictal ten years ago after a grand mal seizure i had at uni.At first i was given Depakine but it gave me migraines and then was on Lamictal.The latter didn't give me any severe symptom but it caused a rush which turned into acne.I stopped using it and then had to take very strong medication to treat acne.I was twenty years old then.Now they told me to start another antiepileptic drug called trileptal but i am too scared to start it because i am afraid of the side-effects.What type of seizures did you have?Where you conscious while they were happeninG? gOOD LUCK:-)

Thank you for the prompt reply Caron.I decided not to take it before i consult another neurologist.Did you take something else after that?Did it help you? The doctor suggested trileptal in order to see if my dysautonomia symptoms will go away.He said that if they do,then that is what is causing it.Ofcourse he didn't make any promises.If this doesn't work we'll have to keep looking.What type of symptoms did you have when you were prescribed trileptal?sorry for bombarding you with all these questions.It's just that i've taken antiepileptic treatment before and i got severe acne and migraines which i got rid of a year after i stopped taking it.I'm too scared to go through that again. kind regards Elena