Elenapap11

@Nowwhat:I've asked my self the same question again and again.What's the point of overanalysing everything.For me the answer is that i cannot accept that i have to put up waking up every night 3 or four times with a series of symptoms which are intense and having to go to work the next day with 2-3 hours of sleep.I cannot accept that i woke up one day and everything was wrong with me.Doctors are able to say that because it's not them or their wife or their child being sick all day.If they were in our position do you think he/she would 'let it go?'Not really.They would search day and night to find a solution.But unfortunately we are not their sons or daughters and the only reason they want us to 'let it go' is because we are a constant reminder of their inability to give us solutions and damage their ego(and believe me it's really high in most doctors.Most of them suffer from the "God-syndrome".) So to make a long story short i am of the opinion that we should let it go but only if we can live with our symptoms.Looking for answers is a vital instinct of humans and without medicine would not exist and people would die from diabetes,heart conditions,asthma etc...and everyone would think that it is the natural order of things.Don't allow anyone to make you believe that you should quit just because answers don't come easily.

I know what you mean .You can never be a 100% reassured even if you know this is a common symptom.

That's the spirit lumpchp!Keep us posted with your progress in getting diagnosed.

I just wanted to add that i monitored my sleep three times after that and i don't do the whistling sound every night.So if i had done a sleep study in a hospital on one of my good nights it would probably come out negative. I think that in tests such as EEGs,TTTs and sleep studies the results are not always right because you might be doing them on day when you feel ok.There are various parameters that may affect results and that's why it's always good to check yourself at home in actual conditions that you live your everyday life. NMPotsie i have bradycardia too during my sleep.I have around 42 heart beats during sleep.How many have you got?

As everybody else already mentioned you are in a forum where people can help you in many ways.And most of all emotionally.We've all been there-the questioning by family members and relatives,the guilts that we are not good wives,partners,mothers,daughters etc.Most of all the feeling that noone understands you and ocassionally make you feel like you are making it all up.Especially doctors are keen to give you a panic attacks/depression diagnosis.You need to be mentally and emotionally strong because i remember that before i was diagnosed i was so tired by all this that i always ended up crying in the doctor's office.Then i realised that i have to keep calm and not to expect others to understand but MAKE THEM understand that i was not going mad.A good nutrition,avoiding stressfull situations and a good many hours of sleep are a prerequisite to control Dysautonomia episodes.The first year that i had no diagnosis i felt better with a foot massage.I also found comfort in reading prayers and listening to instrumental music. Since the whole situation started after your son's birth maybe you should check your hormones.Hormonal imbalances can lead to autonomous nervous system failure.But there are hundreds of things that could have triggered yours.I hope you find answers soon.Good luck and a big supportive hug.

I heard so many people these days writing that 'we have to take the bull by the horns' and that we should be an active member in the process of a clear diagnosis.For those who have read my previous posts they know that the doctors were unsure if i should take antiepileptic drugs or cortizone...or search more Anyway after many nights of waking up with numbness,tachycardia,nausea and waking up tired i decided to monitor my sleep with a video camera.I thought that if i was having some sort of seizure there would be some signs of it.I wanted to see what i do before i wake up feeling so awful.The next day i watched the dvd and i was really surpsised by the findings.Firstly,there was no spasm,twitching or anything to indicate neurological abnormality.My face was very peaceful and i seemed to be sleeping deeply.Thirty minutes after i had slept i started opening my mouth and seemed to be struggling to breathe.While my mouth was wide open i started making a whistling sound which was really loud.That lasted for a couple of minutes and then i woke up suddenly gasping for air.The symptoms when i woke up where numbness in the abdomen,difficulty breathing,brain fog but....no whistling sound.I stayed in a sitting position for fifteen minutes until i felt better and then i went back to sleep.After that i slept normally for the rest of the night.Now i wonder if this has been happening all along. Today i went to my neurologist and did another EEG which came out normal.I explained what i did with the video and he told me that he was now convinced that epilepsy treatment is not what i should take.I spoke with my allergist and she put me on Singulair,Aerius and Afluon nasal spray with new dosage and now we'll wait and see if i m going to sleep better.I will probably need to do a sleep study in a hospital at some point but I am so happy we've ruled out epilepsy.Why haven't i thought of doing this video monitoring earlier?Or why didn't any doctor bother to give me the idea? Let's hope this will be the beginning of getting my answers and put an end to my chronic problems(or at least put a pause-that will be good enough for now)

Congratulations Michelle!I wish you both all the best and most of all many many healthy days and years.By the way i loved your wedding dress,hair and make up.Simple and elegant.I guess it worthed the 4 hour preparation you mentioned

Hyperpots thank u for your wishes and for suggesting Dr.Mathias.I have heard of him from the forum and i have his contact details.I wasn't sure if he has his own office or if he works in a hospital.I think i need a good centre or clinic like Mayo in the US where they can run tests and be able to see doctors of various specialties because there are allergies,electrical wave abnormalities in the eeg and a variety of GI problems.Diamondcut thank you for the information on Dr.Mathias.I ll try to contact him and see what he can do to help me.I'll also check on the Neurology Hospital.If i need further details i will take upon your offer and send you a P.M Thank you both very much!

Hippychic are you on any medication at the moment?

Your story really touched me.I am in a position where doctors have let me down as they are more keen on giving me anti-depressants or epilepsy treatment(though i don't have a confirmed epilepsy)I am thinking of visiting a doctor in the UK or go to Mayo Clinic in the U.S. Natops i hope you find the end of the Dysautonomia tunnel very soon.Keep us posted with your progress,By the way,very interesting information about LEMS.I wonder if my doctors are aware of all that...probably not.

Tonight i crossed the limits of patience.I started getting tachycardia,intense heat in my body and chest pain at 10.30pm and my temperature was a bit high.Then i started having various pains in the abdomen-nothing intense.I thought it was just a mild dysautonomic crisis.Now it's 8am and i haven't managed to sleep all night.The moment i started falling asleep i would wake up immediately feeling numb all over my body.This happened several times and then i just left the room in a state of dizziness,brain fogged and tired and headed for the living room.I was sleepy but knew that if i did i would start having the same symptoms so i started surfing the net for epilepsy(i thought maybe the fact that i am not under treatment is the root cause of all that i have lately)I found nothing that relates to my symptoms which can indicate epilepsy.I also realised that my idiotic neurologist has concluded that it's epilepsy based on a simple eeg(no video eeg,no 24hour monitoring and no specific diagnosis!)I read that in order to receive proper medical treatment the doctor needs to have a clear view of the type and the cause of epilepsy.But ofcourse none of this occured in my case(with any of the five doctors i've seen so far)So i wonder:How can i be sure that i need to take antiseizure medicine when i haven't had an epileptic seizure for 12 years?(i ve only had two in 1999 and nothing after that)I have tried TRILEPTAL and i still had the same symptoms(plus i kept having a rash as a side effect from the drugs Anyway i decided to stop thinking about it and fell asleep on the couch to get some rest around 4am.I woke up again at 4.30 feeling numb,my muscles aching and with a feeling like i just woke up from a brain surgery.I felt soo tired that i started crying.I really needed to sleep...and i felt sleepy...but for some reason every time i did tonight i would jump up with all those symptoms.I spent the rest of the night lying in the couch feeling miserable and asking myself when is this going to end(i'm sure u know what i mean)Am i supposed to do something that i am not doing?I really fed up with my doctors.I spend a fortune on visits and check-ups which are usually pretty much the ones that never show anything.They jump up to give me diagnosis without extensive tests and when i don't respond they just take the diagnosis back and tell me it's probably something else.What do you mean 'probably' you moron?If you can't help me just say so and direct me to someone who can!Don't take 150euro a visit just to tell me that we will monitor my condition and if there' s no improvement(a miraculous one!)then we will investigate it further.I've been investigating for years and still nothing!The only thing that has improved is the doctors' bank accounts.I'm so angry right now that i would like to punch both my neurologist and the other two doctors who i have seen recently.What's the point of seeing them?i still feel lousy. So i think i am done with doctors here.I will try to find a decent medical centre abroad.Any ideas?The UK is the closest to me so if anyone knows any good neuro centre there i would really appreciate it. Sorry for being so dramatic but i am so tired and sad that i am about to give up on everything.quit my job,tell my husband to find someone else so that he doesn't have to put up with all this and definitely quit from doctors once and for all.

Maia i feel for you soooo much.I'm also angry and frustrated with my relapse(i got the flu in July and it turned into bronchitis which turned into asthma which turned into a messed up autonomic nervous system.)I'm really making an effort to keep my calm-and i owe a lot to the people of this forum for that.What symptoms did you have from the antibiotic?was it immediately after you took it?I had an anaphylaxic episode from Claricid which i had taken many times before and never had any problems(except for the usual exhaustion and stomachache) Regarding the use of antibiotics I never felt that they were making me better in terms of POTS/Dysautonomia symptoms.On the contrary,i sometimes wondered if they were exacerbating my symptoms.However i think that every organism reacts differently to medicines.Or maybe it has to do with the fact that everyone's root cause of POTS is different. I wish i could tell you what to do....but i am pretty much in the same position as you.What i can tell you with certainty is that the sooner you vent and let the steam get out(to your friends or here to us who understand what you are going through)the sooner you will be able to start getting better.Our good emotional state plays a key role in getting better and by experience i can tell you that even when you see no solutions there are always things you can do to feel better.I know... "easier said than done" but CHANGES need to be made when life brings you in front of this awful illness.Love yourself no matter what and be sure that you ll be better again like the last time.Have faith.

Arizona i don't know which type of test it was but i just spoke to the allergist and she said that the results are normal and they just show that i have allergies.The mastocytosis scenario is overruled so now i have to do the tests to see what i'm allergic to.The trouble is that this will be in two weeks and i wish i could do them sooner so i can realise what's causing these episodes and stop them.I hope these don't come back normal because then i'll have one more inexplicable illness and it's the last thing i need.i already have plenty of those

I just got my blood test results back and it appears that my IgE is 182iu/ml(normal level is less than 100iu/ml.IgM is 230 mg/dl(normal levels 40-230mg/dl).Triptase,IgA and IgG where normal. Has anyone got an idea what these results could mean?Has anyone got high IgE and IgM?What did your doctor say about it?

Thanks for the tip LMG.I think i'll go to a healthstore in the morning to buy the powdered form. Kor1212 I never had problems swallowing pills even as a child.At the moment i can't swallow anything that is not creamy or liquid so i don't think that taking the tablet with yogurt would help because it would still be hard to go down.(what a strange new symptom!)Thank you for the reply though.

High Triptase levels on your blood are a sign of mastocytosis.The doctor told me that if they are high we will have to proceed to a biopsy in order to confirm mastocytosis.I am not quite sure if this is the same with mast cell disease.About celiac tests i remember that i had stopped eating wheat and food containing gluten for a couple of days before i was tested for celiac.(my doctor suggested that-in order to see if i was going to feel any better)The results came back negative so i started eating bread and food containing gluten.

i have a very dry mouth and esofagus these days and i have problems with swallowing.Does anyone know if there is another way of taking magnesium citrate tablets?(like dissolving them in water)Yesterday i almost choked while swallowing one and i am afraid of trying it again-especially today that my saliva glands are not working properly and my mouth is really dry.I can't contact my doctor cause she's out of town and i dont know what to do.any ideas?

I had a worsening of allergies with dysautonomia.I had allergies as a child but never food allergies.This summer i had a lot of serious allergic reactions to food.I saw an allergy doctor on Friday and tomorrow i will have some blood tests to investigate possible mastocytosis.Next week we'll do the tests for food and i am really curious to see what the results will be.So far i have noticed intolerance in cheese,tomato,chicken,fish,banana(and i love this fruit!)and melon.I have GERD and IBS so there are a lot of limitations on what i can eat.I can't imagine what i'll be eating if they forbid all the above.Westernmass i understand your worries about getting the nutrients you need.I have iron and magnesium deficiency(among some others)and i am also worried that if i stop eating certain foods i will have new health issues to deal with.But i guess that i ll have to wait and see till the results come back.Have you checked for mast cell disease?have you checked your triptase levels?

Thank you for your reply Jackie..It's so encouraging to hear that your sister had a healthy child while taking KEPPRA.Congratulations on your pregnacy.I hope everything goes well for you and your baby.

I don't drive(since the doctors suggested that i don't-though not so much because of pots but because of the eeg abnormality which may be epilepsy-still no definite answer on this one).I work as a teacher but if i was on another field of work i m pretty sure i wouldn't be working.Even now there are days that i m so sick i can't go to school. On two occassions i collapsed in front of my colleagues and students(very traumatic experience).I;m lucky because the headmaster and everyone in the school have been really understanding.I try to give my 110% when i am well but there are days that i am in the class and i can barely talk(because of breathing problems and fatigue) so i have to invent clever ways not to show i am unwell.I think that if i wasn't working i would be better healthwise but i love what i do and i would be sad to abandon my classroom.(plus it would damage the family's finances since my salary is an important source of income)

Thank you Girrafe&Relax86 for your wishes. Mothers with POTS are heroes and i really admire your strength.I wish you both the best for you and your babies.

Thank you for sharing your story Kay.I am sorry to hear that you are not well at the moment.I know the feeling of getting worse when you think that POTS might have forgotten about you.The thing about POTS is that when you are really sick you think it will never go away but somehow a day comes and you are better.I hope this day comes very soon again for you!

I was wondering how many of the ladies in the forum had a baby after being diagnosed with any type of dysautonomia.My doctor said that if i want to have a baby i should do it now that i am not under any medication.(i only take atrovent,aerius and medrol for sudden allergy attacks).My blood pressure and heart rate are generally good and don't need to receive medication but according to the doctors' opinion i should start Keppra at some point.They don't mind if i wait a year before i start as i don't have seizures and the only thing that indicates epilepsy is the abnormal EEG.(and my occassional migraines) I would be very interested to hear your experience during pregnacy and if any children were affected in any way by the mother's condition.Any preconception tips are mostly welcome. p.s.my family is not very keen on the idea of my having a baby.(they are afraid about my health)How did your environment and doctors feel about your decision to have a child?

Two days ago i booked an appointment with an allergy doctor and she asked me if i have ever done a tryptase blood test.I didn't even know what that was until she mentioned it but she suggested that i do it.Anyway the appointment is next Friday so i'll have to wait for further details.My GP said that i might have mastocytosis because my allergy symptoms are getting worse for no apparent reason.I see that lots of people have done this test and also biopsy for mastocytosis.Is the biopsy very painful?i haven't done it before.By the way,how different is mast cell disease from mastocytosis?

Kimbell i agree with the comment that we are the best advocates of ourself.For you i suppose things are a bit better in this department since you work in the medical field and you probably know a lot more about medicines and their properties.I had to study hard to learn and be able to communicate my worries in the "doctor's language".About supplements i was hesitant for a while because i was worried they might worsen my symptoms but i have been taking D3,magnesium and folic acid for a couple of weeks now and luckily there were no side-effects(at least not yet).I also took b-complex supplement but stopped after 3 days because i had fluo yellow urine and i got really scared.Then i read an article that suggested that this may happen especially if your body has an excess of B-COMPLEX vitamins.Have you heard of that before? Arizona i am glad to read that you are getting better.Any improvement that allows you a more functional life is great news.