k&ajsmom

Thank u again issie, you have given me GREAT direction to go hunting for information. Yes we are some unpredictable creatures...lol...Ill just have to trust my gut and wait till I see Dr. Chemali. However, I started my zantac today with my zyrtec and claritan at bed. It immediatly calmed my stomach, along with my other meds felt pretty good. I was surprised, wish I had done this sooner, but then I had another massive allergy meltdown, so as I sit here, swollen faced and sneezing my self into fits of tachy ...lol....I have some excellent links and info to read up on till I can emerge from my abode and slink to the healthfood store. All and all, Im really excited about trying some things and its given me a bit focus, so thx again and take care =)))

Hi B and welcome to the forum =)) Its hard to believe a doctor can say this normal??!! lol baffles me what they consider normal, maybe benign but def not normal lol anyways my doc didnt pay much attention to it either and said its your autonaumic dysfunction just having fun...woo hoo <eye roll> I have been sick my whole life but honestly I dont know if it happened when I was a kid, I wouldnt have noticed and am still waiting for records....its so wierd though, I can predict how I am feeling by my eye function hour to hour...just another fun potsy party trick I guess.

Hi Jl, welcome...I found this forum only a month ago and I cant tell you how much it has helped me understand myself and help me feel sane. I was so confused when I got diagnosed the second time with POTS. I ve dealt with this illness my whole life and have learned more in the last month than I have in 31 years, mostly from the kind and supportive people that have been, and are going through it with me. Hang in there and just ask lots of questions till you start to find your ground. Talk to you soon and take care =)

I posted this a little while back....but since I have noticed that when I feel my worst my pupils act up worse. I felt pretty good last night for the first time in a while and I looked in the mirror as I washed my hands and My pupils were constricted properly and not jumpy. Also for the first time in a while. Obviously this reaction accompanys my other symptoms but I just thought it was interesting to note that its not a constant but flucuates with severity of everything else...wierd lol

Just an update.....I think minus a little moodiness and massive 24/7 allergy attacks that feel a little fluish....I feel good...atleast much much better.I am actually tempted to say I feel better than I did pre-zoloft. I went shopping last night, this was the first outing I have had in a great while. I only shopped for 30 minutes but made myself keep walking around for another hour after that. I knew when my vision started to get funny and I got a little loopy, I had to sit for awhile while my fiance checked out but as soon as I stepped out in the cold air I felt reenergized. It was great lol...Still having alot of issues but this is unexpected progress. I almost feel like coming off the zoloft set my body to reboot, not completely but enough to be a relief for a while. =)) Thank u everyone for your support through this, and I am sooo glad the severity didnt last as long as I thought it would ...whewww

Hi issie, thank you so much for taking th etime to write me. I have decided, though tentatively, to not take my new meds. I know my doc will be "bothered" but I need to trust my gut on this one I think and try some healthier routes first. Ill continue my florinef and other meds, but think I will be adding zantac, Which I already have on hand from when the er initially told me I had anxiety and reflux..blah blah blah lol I have been researching mcas and other realated mast cell issues and it fits like a glove. Thx for the explanation on the snri, though I feel it may be helpful, I feel the side effects would not be. AFter coming off my zoloft I dont waana do that to myself again. I also dont think messing with my gaba levels is wise. Xanax, the last time I took one, effected me very very poorly and crashed my sytem with massive chest pains....no thank u gaba gaba. I cannot express how well the mast cell issues seem to fit....its like a light was turned on. I am gonna find a local health store and plan an outing today if all goes well and honestly I am excited about the possibilities, opposed to being terrified about the manufactured drugs. They will be alast resort. I know I have a lot to learn here and do read and read ad read and have learned alot...but am so amazed at the levels of knowlegde some of you guys have. Its inspiring that we dont have to be victims and dependent only on a doctors knowledge. I hope to be my own advocate in this. I have 6 months to prepare before seeing Dr. Chemali so until I will be studying lol. I do feel there is something with mvp, however my echo and nucleur tests were all clean, except for tachy and some afib, my mom has mvp and hypotension and on atenolol her hr still climbs to over 100. Do you know if mvp can be missed? My mom was diagnosed over 20 years ago, went recently for 2 echos, first said no mvp, second said mvp present? Is it one of those things that can be occassional??? This feeling I have comes and goes?? I dont know if I should push for an echo when I feel it flaring?? Thx again issie =)

I agree with all the above comments, ur mom is gonna worry even if you were never afflicted with any obstacles. Thats what us moms do...worry, however use your strenghth to live and not hide. Tears are healing in so many ways. I know Ive had a quite a few meltdowns and emotionally recharged after a good ol cry. As Rama said, and I totally agree, genes vary person to person. Just cause there is similarities doesn't mean you are identical. I also rely on faith, although severly tested day to day, I grow stronger through the turmoil, plant your feet upon rocks and have faith in what gives you peace.

What lies behind us and what lies before us are tiny matters compared to what lies within us. - Ralph Waldo Emerson Have you been able to seek treatment with a specialist to determine exactly what your condition is?? I didnt know there was a birth dysautonomia that was different from familial. Maybe some second and third opinions to see what kind of treatment can help prolong your remissions?? I know these are only words, but you seem to have goals and dreams I think you should strive for. Im not sure what to say in regards to familial dysautonomia, because honestly I am not educated with current up to date info on it. Im sure there is more others can offer. However just because you have had tragedy in your life doesn't mean you are hopeless. There is always hope...and faith. Without tears your soul would not have a rainbow (JCG). Please hang in there and although I cant be much help here, we are all, Im sure standing by you in your fight, emotionally and spiritually. {{{Big huggs}}} -sarah

Ive read several posts on here and I feel very like a preschooler reading advanced chem.....lol...so bear with me if and feel free to roll your eyes at my lack of common sense on this stuff... So ive had adrenalin rushes all throughout this illness but they were always undefined and irratic and Im not sure Ive always recognized what they were till lately. It seems since Ive withdrawn from the ssri (doc says I had serotonin reaction?) that my symptoms are very well defined and predictable now. I wake up and for a few minutes I feel stuck in brady, then I start to feel adrenalin, which previously I think I associated to anxiety. Then my heart speeds up to tachy. WHen standing I feel lightheaded and tachy, weak and shaky but not so much witht the adrenalin feeling. Then when I sit, bam adrenalin surges...takes a long while for the heart to come down, but it does calm however it beats forcefully. I can feel and see it everywhere, evn at 80 bpm or even 70bpm. Pvcs increase alot during this time. If Ilay on my left side of back it stays the same...if I lay on my right it calms down significantly and feels somewhat normal again. Then it will slip back into brady till I get up again. I also notice its become apparent that this is going to happen after a meal. The thing that confuses me is Ive read a lot of you have these adrenal surges but its usually with flushing and heat and high bp. Mine is not, occassionally I will get overheated and feel swollen but not always during these episodes. And I never have high bp...ever. The highest has been 110/70 and it only stays that high for a moment before it drops back down again. I dont think I have flushing, or I think I would know it...lol ALso the doc as Ive previously posted wants me on a snri or lamictal...wouldnt this increase adrenal responses??? My fiance is dealing with ptsd and tbi and is on a lot of meds, two of them are for adrenalin rushes...he gets flushing, high bp, tachy....he is on wellbutrin and abilify along with several others such as gabapentin and some others I cant recall. He says his doc told him it is to "burn" out the adrenalin. His body produces too much so the pills add more availabilty which cancels it out. He doesnt understand this explanation and neither do I. I know this is asking a lot but can anyone try and explain what they think is happening, and feel free to dumb it down for me haha Ive tryed learning from old posts but some of it is just too much for my little brain <blink;stare> ;P I really need a pots for dummies manual

I dont have many signs of eds, I bruise alot and have areas of thin skin and some very slight hypermobility, only localized, however my son does have to crazy things e can do with his joints but that is it with him. Im so glad this was posted so maybe it can help your son atleast rule eds out. The vision issues my daughter is having she cant see things close up very well so this is maybe something Ill have her doctor look into. SHe was recently diagnosed with mederate to severe scholiasis and is in a boston brace.....does anyone have scholiosis in relation to eds??

The more I do the worse my chest pains get . I wish I had a suggestion but all have found to do is just sleep it off and reboot. and make sure Im extra hydrated (haha) I one night was so desperate I tryed a heating pad which helped a little with my costo, but I also get angina "like" pain that just has to go on its own....Good luck and Im sorry u have to deal with this. Might wanna check with your doc if it continues to be debilitating. Its def. a really yucky symptom =(

I have several visual changes since all this got worse. AT times things do seem dim or dark. They also just seem off? It is hard to describe for sure. Kind of like things are moving too fast or Im looking through a fishbowl...but yet I see fine. My night vision got much worse and in one eye I am blind at night cant see my hand in front of my face in a dim room. With that said, my biggest problems are outside or in artificial lighting, especially fluorescents. I dont know how to describe it other than a visual seizure...?? my eyes feel jumpy and cant focus on anything or hold still, it makes me feel ill and forbid I mix look at a busy pattern at this time. Outside everything seems muted and distant. This was one of my first symptoms and I went to the eye doctor and my vision had deriorated slightly and my astigmatism had gotten a lot worse, explaining the night blindness. Now, I would say usually this would be unrelated to pots, however, this happened very suddenly, like literally overnight, so ???

Thx P, There just seems to be no rhyme or reason with this stuff sometimes. Im still pondering my choices and may for a while. This steven-johnsons syndrome is a worry fro me, probaly the only one holding me back from L. I guess I need to google it some more to put my mind at rest. Thx again =)

Ashelton, My daughter around the same age as yours, had night terrors. I never noticed tachy though I never would have know to check at that point. Its so unnerving when they are in that have lucid state. I feel for you and hope it passes soon. My daughter outgrew it and like bebes son I associated it to trauma, although my daughters was emotional in nature. Like you I feel my pots is somehow genetic, my mom has hypotension all the time and mpv. She has tachycardia but has never been treated for it. Shes been on atenolol for 20 years for the mvp. Her mother used to faint on a daily basis but never went to doctors and her mothers mother died in her 40s from addisons. I cant seem to connect to dots with us all but there is something there I fear dreadfully, that I have passed on. My sister passed away when she was two from hemolytic eurymic (sp) syndrome, so I have always been a paranoid for my kids but never with there hearts till now. My son was born with a heart defect but remedied easily with meds, he was a preemie, actually they both were very early. I went into labor at 25 weeks with my daughter and held off for 4 weeks in the hospital and my son was born at 32 weeks. I suspect this was related to my autonaumic dysfunction. I hope your baby outgrows it soon and honestly I really hope to believe the night terrors are outgrown and unrelated. Take care and hugs to your little one. Bebe, oh your poor tough little guy. Breaks my heart he had to go through that, but Im sure he is one tough little cookie now. As far as your daughter, I hate hearing of children at any age dealing with anything like that as a mother. Just wish I had a magic wand. Ive been pushing all the kids with water hoping its just dehydration but I think I know better considering how many times we have all heard "drink more" ugh I hope to get my daughter checked out soon. SHe had an episode again last night while she was in her room watching her favorite band (one direction...swooon lol) I told her all the boy bands are just making her heart flutter, but I did check her pulse and bp and went into nursy mode. All normal, thankfully...but we know how that goes. Thx for the encouragement and best of luck to your babies Joann, I actually did just start checking there vitals during these times. All normal <snicker> mother like daughter/son........but better than the alternative. However my sons arms are so small the cuff doesnt work so his nurse at school and then again at the er checked him and he was normal. He got up yesterday off the couch and his eyes he said went black again but no chest pains. He may be my low bp culprit I think. I hate your daughter had a bug but happy it is something that will pass...so that is great. It does make me feel physically ill worying about thsi with them. I used to be tough as nails and could handle anything. When my son was 6 months he sudden became very ill, took him to the er and he had meningitis....while I was there I got a call my daughter was on her way by transport. She was having fibril seizures from sudden fever...also meningitis...I was terrified but handled it....now I can barely handle to the stress of running out of waffles in the am lol Cant wait to be well again..for them. Anyways thx for the feedback and well wishes to you and your family. This poor kids are about to get run through the wringer so I have peace of mind lol They hate going to the doctors lol Take care =))

I enjoyed reading this thread. I am familiar with the heart rate variablity being a healthy thing, mine is excessive, 30 bpm increase or more sometimes, and other times is at an appropriate level. My nurse in the er a while back, looked at me funny from moving my arm from over my head to my side, and in response my hr jumped from 90 to 130. I am correct to assume that this is possiably sympathetic overdrive causing this. I also have a qeustion that seems to related to hrv that is quite irritating. When I stimulate the hrv sometimes (not always) it seems to also increase the force of caridac output. Meaning, if I sneeze or have a coughing fit, sometimes my heart rate increases and I feel forceful beats, when this occurs it takes quite a long time to not "feel" my heart pounding even if the rate has returned to normal, at these times I will get several pvc's. Then there are times hrv increases with stimulation and does not feel forceful at all just quick. Is this at all related to the same mechanism or just another factor possiably involved? I also notice sometimes hrv and force are directly related and worsened by have a full stomach, even a small meal. Thanks for any feedback you can give, just trying to learn lol =)

Ive used one for years on and off....def agree purifed water only, tap is very dangerous if it is contaminated. I have had good luck with a neti pot, it def helps if you use it consistantly, which is my problem I cant seem to use it everyday ( i forget) but when I do its great with inflammation. And there fairly inexpensive, cheaper than antihistimines so if you dont find it beneficial you havent lost much. =) My fiance says when he was overseas the locals used them twice a day, everyday and never had allergies or sinus infections. good luck =)

thank u so much peregrine, I wish I would have seen the med in your signature to ask sooner...I find it comforting you do not have any side effects, I am a bit of a pharmacophobic and rightly gun shy recently with the meds. Anyways, I was wondering how your bp and hr runs if you dont mind me asking. I know you cant say in relation to lamictal but just in general. I was just reading it helps stabalize bp in some people with dysautonomia and bi-polar disorder, but nothing on heart rate yet, I hope Im not prying.... Tia either way and take care =)

I dont these days, my tachy is so constant with movement its ridiculous, however when diagnosed with autonaumic dysfunction as a child (back when pots was even less known) I did not always have tachy and I would pass out daily sometimes several times. My heart rate would actually slow on some occassions. I actually think syncope is worse without the tachy, because there is no compensatory action there. (atleast for me)

This a very interesting topic, it may take me a while to clear my head enough to fully understand all it applications but there are some similarities for sure. My fiance is a veteran and has been exposed to countless harmful "agents" as well as combat realted injuries both physical and physcological. He diagnosed ptsd and tbi (traumatic brain injury) with other contributing factors. His symptoms def have some simularities to pots. I would say to the hyper form though. He is alos treated with a lot of similar meds as hyper pots so this is something I would like to look into somemore. Thx for all the good reading here =)

pss..geesh Im scatter brained...I am feeling better with the withdrawel or serotonin (whatever lol) today...not marginally but some progress. It seems to come in 5 to 6 hour waves of illness now. I will feel like death and then like a switch as been flicked off I feel just potsy again.The twitching comes in waves of severe to hardly noticable. But the worst is bp and hr swings for sure now. I woke up today with a hrate of 49 and stood up to 160, this makes me very nervous and sets my anxiety off and makes me scared to push myself even off the couch. My 6 day headache seems to have finnally become bearable...thank the lord.... I am definatly horrifically decondtioned and am really struggling with this and think its just making me so much worse. Will keep everyone posted...and I cant thank u enough for the sopport..it has been rough the last 2 weeks..... DOnt know what I would do without this forum

Ps....btw the doctor confirmed benedryl as an aid not only for my severe allergies but with withdrawel, however I am already on zyrtec and claritan and benedryl seems to flip on me and cause nervousness, agitation and insomnia....just another wierd med reaction lol

Thx so much for your concern abby, it truly means alot to me. I asked him specifically if it was withdrawel and he said....some it is but not alot. The emotions of course are and maybe some minor things such as fatigue and stomach upset but mostly he says he believes its serotonin because my symptoms seems neurological and that is caused by a bad reaction to so much serotonin. He says specifically the twitching is neuro and he is very nfmiliar with this being a symptom of serotonin syndrome and can be a residiual symptom that can last forever or just occassionally. He says also I shouldnt be on a ssri again becuase it will increase the chances that it will become a definant permanent issue......however then he put me on lamactil and when I told him I wasnt sure if I could afford it he says the option is elavil...which is an ssnri?????????? I questioned him on this and he says it is a similar drug in its actions on norepinephine and adrenaline to the lamactil....so Im terriable confused because they seem to be completely different compounds.....???? with the one increasing serotonin availability...ugh Jacquie, I am familiar with that "deadly rash syndrome" and quite frankly it is scary to think about. He says its a low enough dose it shouldnt be aproblem and its rare, but as we all know, potsy seems to always be the .1 percent..haha lucky us. I asked why this drug and he said because it helps regulate norepinephrine and adrenaline and will help me calm my system from the serotonin syndrome and help me reboot to calm norm.(whatever that is) Im not sure what to think really since I have NEVER heard of this route being taken and am really scared of this drug. However the elavil seems worse....aside from the Steven-Johnsons syndrome lamactil has far less side effects. I have heard of cardiac envolvement with elavil and hallucinations...one specific side effect being heart block, although again rare....I am not a gambler. And it increases serotonin, although not as much as a strictly ssri, I think any would be bad considering the above mentioned symptoms. He assures me it would be fine but recommends Lamactil first if I can afford it. I I guess I may become a guinea pig for this med but it may take me a little while to gather my courage.

Oops yes...thats the one...=)

yes, my feet are ice cold and tingly all the time, except for the middle of the night I wake up and kick of the socks and blanket off cause they feel hot and swollen. Wierd cause soon as a get up they are cold again.

Doc wants me on one or the other....opinions? I am scared of the side effects of the elavil, heard bad things however Lamectil, after some research seems a little leary as well. Can anyone explain how these work for pots? I cant seem to find an article or relation to pots treatment. I am very undereducated on these meds TIA =).