Elenapap11

My doctor suggested taking Trileptal, an antiepileptic drug. Has anyone used it? Did you have any side effects? If anyone knows please reply as soon as you can because the doctor wants me to start it today.

When i am at my worst i am very sensitive to smell.I can also smell things from a distance and though i don't always feel nausea,most of the times it makes me dizzy and causes tachycardia or dyspnea.Before POTS i never had such a strong nose but now i am like a hound.I can't stand the smell of gasoline,paint and smoke.These are my worst.

Hi everyone.i've been finding it difficult to breathe since Sunday and i don't know how to deal with it.My blood pressure is relatively normal with the lowest being 90/60 and the highest 110/70.My heart rate though is worryingly low.On Sunday i had 49 and 52 was the maximum.I felt terrible and i had to stay in bed for the most of the day.Yesterday my HR was higher(80) but today its 59 until 62 the maximum. You're probably wondering why i didn't call the doctor but the truth is that i am really angry with him because he's been really indifferent lately.Plus he had me do all these tests and he never gave me any answers.He told me that i need to be patient because we are on a good track.On top of that when i asked to see him urgently this week he said that i've been having this problem for years so a couple of days of waiting won't make a difference(!!!!!!) I cry my heart out every night that i can't breathe.i wish someone could tell me what to do...i thought of calling my previous doctor but she wasn't very helpful in the past either. What would you do?Has anyone had similar problem for so many days non-stop?What did your doctor tell you to do?I would like to see a cardiologist again but last year i did a cardio check-up and they told me i am fine so i don't know if i should do it again now. Any ideas?

Hi Detrick.Like you,i was first diagnosed with NCS after years of episodes where i nearly fainted.It took the doctors years to realise that i wasn't depressed or hypohondriac.The year before the diagnosis i had symptoms every morning same hour.I felt light-headed,had high HR,i was numb and cold,had tremor and felt like i was going to faint.During the day i would be a lot better but as time went by,i started having problems in my sleep and then i was completely exhausted.It was really frustrating that every time i went to the doctor.After a tilt test two years ago they told me i have NCS and a couple of months ago another doctor told me it's POTS.Now i have come to the conclusion that it's both and i am trying to figure out ways to improve the quality of my life without using meds because i used quite a few and they all made me worse.I am 30 years old and although i was diagnosed at 28 i must have had it for years. I was wondering...you said you had symptoms for 15 years.How did you cope with it all those years and what where the doctors telling you?They had told me i had epilepsy when i was 20 but it was a wrong diagnosis.Were you diagnosed with something else too?

Becky these days i feel exactly the same way.I am 30 years old and i feel like i am 70.Actually my 75 year old grandmother is stronger than i am!I can't be bothered making a new appointment with any of my doctors.They've all let me down and i just can't find the energy to start searching for a new doctor again.They all do the same.Tests after tests,speculations and then....nothing.The worst part is when they start avoiding you just because they are not honest enough to admit that they are unable to help me. I tried to cook today and just because i lifted a heavy pan i started feeling unwell.I started sobbing and later i felt so angry.My POTS is like one step forward and two steps back every time. I don't feel depressed either.I am just unable to cope with the consistent fatigue and mostly the breathing difficulty.Maybe i should see a therapist too.How long have you been seeing a therapist?Has that helped you at all? I hope you'll soon feel better Take care Elena

I am really happy for you KC because from the previous post i thought you had gotten worse.I hope you'll keep getting better and leave all this behind you once and for all. Have a wonderful potsfree week

I tried Zoloft a year ago and not only didn't it make me feel better but i got a lot worse.I thought i was going to die.I stopped it after two weeks and i started feeling better gradually.Everything i have tried either gives me side effects or doesn't help.To be honest i don't see the point in taking so many drugs since none of them is a cure for POTS or NCS.I am very frustrated by the fact that doctors treat us like lab rats and prescribe whatever comes in their head on. Speaking from my personal experience whether i was taking meds or not POTS crises would come and go regardless.I haven't taken anything for 3 months now.Sometimes i wish there was something to take and stop the symptoms but i feel that if i keep trying all these drugs i'll end up with renal failure or some other problem....and i've got enough already! I think that if all drugs increase your symptoms you should simply not take them....and for me Zoloft was a terrible drug.I don't think that it does anything for dysautonomia and it should only be given as an antidepressant. sorry if i sound a bit harsh but when i read posts about drugs that make us worse it really upsets me.I wish there was something better than what we already have. Take care

This is how it started with me.I had chest pains,burping and i felt like i couldn't breathe well.I don't have severe chest pain now but i still have indigestion,burping and breathing problems when my POTS gets worse.Eating small light meals helps.I stopped drinking anything else but water and this has also helped me.However the most effective way of dealing with all that is by avoiding stress.Whenever i get stressed i start having crisis and no medication can help.When i am relaxed and calm for a long period of time symptoms are rare and not as intense as when i am upset,angry or sad.So make sure that you get a diagnosis and let everyone know that you need to lead a stressfree life(to the extent that this is possible ofcourse). Good luck with the diagnosis.

Hi Kexia.Eventually my MRI was clear so there is no tumour.I was very relieved but unfortunately the stress triggered pots crisis again.I am at my parents house for the holiday and last night i had to wake them up because i was very unwell.Today i am better but i hate the fact that i got them worried...again!I hope that i'll be well until i go back home because i don't want to ruin their holiday. Have a wonderful pots-free time everyone and thank you once again for sharing your thoughts and feelings with me.

AJW in my opinion it is unfair to you to be compared with a patient who's dealing with cancer.We all have a right to express our frustration no matter how serious our problem is.If i were you i wouldn't talk about my problem in front of people who compare my situation with somebody else's.I have POTS and all sort of things going on but my parents never stopped listening to my sister's problems just because they weren't as serious.Our family is there to support and listen to us.If for whatever reason they are unable to do so we should seek support from someone else.As for the working issue in all medical conditions there are people who go to work and others who can't.If your relative goes to work it means that he is not as bad as other cancer patients who are forced to quit their job.The same goes for Dysautonomia patients.Some of us can go to work and some can't.Noone should be the judge of how sick we are.They are not in our bodies. Being in a family of three children i know that when one sibling is sick he gets more attention from the parents and that can make the other sibling angry and jealous.Try to be understanding with how your sibling feels and if you see that he is being unfair or judgemental avoid any discussion about health issues or topics which may end up in argument. Relationships are fragile and someone should always be a bit wiser and more mature in order to make it work.

Kitsakatsa and Firewatcher thank you both for your encouragement.You are both very sweet.I'm sorry for taking so long to reply.I was away all weekend-needed a break from everything-and to day i m going to have an MRI to check my adrenals and kidneys.Wish me luck! Have a nice day everyone.I hope i'll get back to you with some good news. Big thank you hug:-))))))

Maggie i m so sorry to hear that.It must have been a shock.I don't understand how a ruptured apendicitis affected your colon.I've heard that rupture involves severe pains in the abdomen area.Did it all happen the same day or you felt unwell for a while? How are you coping with dysautonomic crises after surgery?are they really bad? Many wishes for a speedy recovery.take care

I guess you are right Firewatcher.I think that what mostly makes me sad is that i am 30 years old and while all my friends are making plans for their weddings,and schedule appointments for baby ultrasounds i am scheduling appointments with doctors and make plans on how to get rid of POTS,asthma,scoliosis,hiatal hernia,acid reflux etc. My partner was really upset with what the doctor told us and i had to be the brave one.I didn't share my thoughts with anyone today so i had to tell someone...even if i know that i should be looking at the bright side(cause there is one in everything...i guess)

Last week i got some test results back.On Tuesday i was informed that i was given the wrong results and they emailed the right ones.They found high adrenaline,serotonin and extremely high DHEA.Adrenaline was high but within normal limits but my DHEA was over 3000 and the maximum level should not be more than 350.I knew that was not good but today that i spoke to the doctor i felt that once again i have to face another challenge.He told me that i might have adrenal tumour and that i need to have an MRI to check renal system and adrenals.I was so angry that i cannot find the words to express it.I can deal with POTS,epilepsy and all the rest that i have been diagnosed with.Why do i always have to get something new?Why that?The doctor told me that it's nothing to worry about but that's what he always says.I came back home and researched on the net.If the MRI shows that there is a tumour i have to do a surgery,biopsy and God knows what else. The irony is that i am feeling better at the moment.No POTS crisis.I was so happy....and now back to zero.... I'm sorry if i sound too pessimistic.I just have so many things on my mind right now.

Erika i know first hand how hard it is to live a quiet stressfree life.It's almost impossible.The mistake i used to do is that everytime i felt better i kept myself busy all day trying to do all the things i couldn't do when i was really sick.I am still trying to remind myself that even now that i am better i need to conserve energy and not use it all at once.It's hard to get rid of the guilts for not being the perfect partner,professional,mother etc. As the documentary says we have to live with changes.And our family has to realise that they shouldn't upset or tire us.We need love,help and support-(not just in words but in actions).I am still trying to reinvent myself but i think i am on a good track because i feel better.I wish from the bottom of my heart that everyone will start loving themselves a bit more and make changes that will give them a better life.Our body and mind talk to us so we have to listen really carefully:-)

The last three months were so exhausting that now that i am feeling better i sleep 9-10 hours! In October and November i could not stay up for longer than 10 minutes.In the classroom i was seated most of the time and if i had to stand up and write something on the board i would start feeling light headed.I was sleep deprived because most crisis were during the night and early in the morning. Now i can be up for many hours but although i haven't had a severe crisis for almost a month, i still do not have the strength to lift supermarket bags or do much at home-i only do the cooking.To be honest i am afraid of doing many things because i don't want to exhaust myself and start having symptoms.I sometimes wake up at 12pm(!!) have a light salty breakfast(and plenty of water) and i relax until i go to work around 3.30.I have given myself permission to become a bit lazy,more relaxed,more focused on myself and my needs and this has helped me a lot.Getting enough sleep,doing things that are pleasant without tiring yourself physically are essential for us patients and we should not challenge our poor bodies by doing things that we don't have the energy for.

Tessie i also got my lab results for catecholamines.I have low dopamine and norepinephrine and very high DHEA and serotonin.When i talk to my doctor i'll let you know what that means.

Thank you for the information Firewatcher.I really appreciate your interest.My doctor hasn't called me yet so i suppose if it was too serious he would have already ask me to come from his office.(at least that's what i hope).

Hi Naomi.i went to a clinic with a team of doctors who work together in order to deal with complicated cases of patient.So it was a GP and a neurologist who told me to do these tests. They took saliva and urine sample and send it to a lab in Germany.The doctor claimed that these tests can give us answers which may help tremendously in finding an effective treatment.You should ask your GP or neurologist about it.Ask them if they have checked your catecholamines and neurotransmitters.(adrenalin,noradrenalin,serotonin etc) I also wonder why no doctor ever told me to do this test.Anyway when i see my doctor i'll let you know what he thinks.

Goodmorning Flop.My DHEA is high 1743(morning measurement) and 1700 in the evening.my cortisol level is normal during the day but a bit low in the morning when i wake up.It's 1,37 and the normal rate is 1,5-5,0.I read somewhere on the internet that very high DHEA is associated with adrenal tumour.I also read that high serotonin is related with renal insufficiency.I know i should just wait to talk to the doctor but i feel that i need to do my own research too.Besides most of the answers have come from patients and from this forum.Doctors never told me all those important things that i learnt from all of you here.

Thank you Tammy.I hope you'll soon feel better and be able to stand on your feet again.When i did these tests i was at a peak of Pots but it's been more than two weeks now that i feel better and i'm able to get out of the house without being afraid of collapsing.It felt as if a miracle happened and now that i got these test results i kinda got dissapointed.I'm trying not to stress out about it because it may trigger pots crises again but it's quite difficult to get my mind out of negative thoughts.

LOL!!God bless you Daisy.You gave me a good laugh.Excellent version of the song.

Hi everyone.I just got some results back from Germany.It appears that i have very low Catecholamines.Especially Dopamine is 53 when normal rate is 150-280.My serotonin is 431 when the normal rate is 148-230.Glutamate is 48 when normal rate is 8-25.Cortisol is within normal limits but what shocked me is that DHEA was 1.743(!!!!!!!!!!) when normal rate for women is 110-385.I'll see my doctor on Monday but i can't stop wondering what that means.Has anyone done similar tests?Have you ever had so high levels of DHEA. Any idea is mostly welcome

I also bought a wedge but it was too uncomfortable and i went back to the traditional three pillow method.Next month i'll get a bed with inclination mechanism like the ones they have in hospitals-only prettier-my dad has one for years and it has reduced his acid reflux symptoms during the night.They are quite expensive though-i've been saving for quite a while in order to get it.Another solution-which my doctor had suggested along time ago- is to put some bricks under the bedlegs to elevate the top of the bed.I didn't try it though so i am not sure that it works...

Erika last year i went to the ER 5 times in a month.I thought that i was either having a stroke or a heart attack...or something that is killing me.In the hospital the doctors kept telling me that i am alright and that i was having panic attacks.I tried to explain that i have no other stress than my deteriorating health but it was obvious that they weren't listening.The last time i went back home feeling humiliated and angry.I couldn't stop crying.I told my boyfriend that it's the last time i go there and that i'd rather die than face these ignorant, short-sighted people.And indeed it was the last time.Since then i have had some really bad crises and even fainted twice but i prefered to stay at home and deal with it on my own.Thank God my family and partner support me and that has made the bad days-the ones that i feel like i'm dying-a lot easier.Love and support on all levels is the best medicine. Lately i have seen improvement but during september and october i felt exactly as you feel now-and that was every day,throughout the day. Hang in there.Try to remain calm and things will get better.And avoid negative thoughts and feelings because it makes the crisis worse Hope you'll soon feel better