k&ajsmom

So I am learning a lot between this forum and talking to family. Apparently, my maternal great-grandmother died in her 40s from Addisons, my maternal grandmother had Potsy symptoms, syncope, hypotension (though undiagnosed as Pots) my mother has mitral valve prolapse, hypotension, high pulse (treated with a BB) she also has Fibromyalgia. I have a sister that passed away when she was two from multiple system organ failure after being unable to control homeostasis. From start of her illness to her death was 2 weeks.(this was 1980)They have never determined a cause of death. However my brother and my self displayed alot of the same symptoms as she did and I was determined lactose intolerant (severe) and autonaumic dysfunct., my brother was diagnosed, lactose intolerant and hypoglycemic. And of course I have Pots now soooooo.... My question is; have u noticed any strong significance of autonaumic abnormalities associated with your POTS in your family history and is there a primary factor causing it or is it idiopathic? I know familial, and msa are rare and usually noticed in childhood with significant indicators, so Im not questioning those forms, more so I am trying to connect patterns of hereditary traits and eventually find main causes whether they be autoimmune or endocrine etc and find something that fits to present my doctor with. Im having to be my own advocate since nobody wants to dig into this for me. I am waiting for my childhood records, which I am told I was part of a clinical trial and study in the 80s for a cardiologist when I was originally diagnosed. I am hopeing it will hold some answers for me, and until then I grasping for straws..lol Thanks for sharing if you can.....ohhhhh and Happy Turkey Day tommorrow!!!! {{{{HUGGS and BLESSINGS}}}}

Batik, I feel ur pain. I can go from hi-low in no time flat and always had huge hormonal swing, no fun. I think knowing its there just in case is half its purpose lol Thx for the feedback Im gonna give it a go tommorow after the kids are off and I can vegg with the remote and a pillow lol Cheers

Same here, I feel ur pain with the gi issues ladies I had several symptoms present at once but the gi ones were severe. Ive tried a few meds for the tummy, lomotil, zofram, bentyl, and didnt like any of them. Lomotil made my tachycardia worse. Out of desperation one day I used apple cider vinegar and honestly it started to settle things Including pain. It didnt fix it but it helped.(of course I phoned my doctor first)Everyday I use immodium, vinager and a good probiotic and am finally getting my appetite back after losing 35 lbs. Ohhh how Ive missed food lol

Ive have this symptom too, I havent decided if its typical allergies (which are horrible, EVERYDAY ugh) or if its connected. I always feel like my glands are swollen and at the same time Ill get a terrible neck ache and headache. I love to know what the connection is...Ill lay down and take a nap or sleep for the night and itll be gone for awhile. At times when I feel like this Ive also noticed my body temp drops to about 96.8(ish) Wish I knew why lol

When I got sick, my symptoms were so intense, horrible gi pain and lost 35 lbs, severe anxiety, brain fog, however what sent me to the er several times was the caridac symptoms. Ekgs were always normal but the last time I went I was had just given up on finding out what was wrong and collapsed at work. When I went to er my bp was 68/37 and hr was in the 180s. The doc couldnt explain it so he admitted me. THANK GOD! someone finally caught something significant. They sent me by ambulance to another cardiac hospital and then noticed my cardiac enzymes were up and run me threw a lot of tests. FInally getting to my diagnosis of POTS and finally getting meds. I did have afib and some other discoveries that primary care should have caught (hypokalmia) so I am sooo glad I went that day. I have noticed that on every trip to the er they gave me fluids always assuming my symptoms were from dehydration (even though I assured them I wasnt) which always gave me a day or two of relief from some symptoms. I see alot of Potsies get iv fluids to help. I know when I was admitted, Id be stable and they try to get me off the iv fluids and I would crash within an hour. I think if any doc tells you to ignore your gut instincts and pain, thats cause for concern, there should be a balance there.

Ps. The signs of low pott. are similar to Potsy symptoms...Dizzyness, muscle cramps, irregular pulse, nausea, however you should never, from my understanding supplement pottassium (ie: pills from the pharmacy) without your doctors advise because it is one of those things your body can have TOO much of as well, and be just as serious as not having enough..=) However pottassium in food is something that would be very very hard to have too much of, so snack away!!

Although I have had autonaumic issues my whole life, I didnt have POTS till this past June. Before it got severe I had some of the exact issues u did. I went to a store to buy a friend a gift and had this crushing anxiety. I felt like the air was sucked out of the room and I couldnt breath. This started happening more freqeuntly as I got sicker. I went out to eat with some friends and had to excuse myself and walk outside. Totally freaked to go anywhere or even drive. I have never had anxiety before and like you am a total people person. ughhh it suxed!! Now I look back and know it was my pots but there was many days I thought I was losing my mind. As Im working on controlling my symptoms that feeling gets more faint.I told my doctor I was losing it and becoming phobic and he actually grabbed my arms and said "ITS NOT ANXIETY ITS UR NERVOUS SYSTEM FREAKING OUT" lol loved him for that...made me feel sane again Ive also noticed other things as I read more posts, like my allergies and sensitivities to meds., heat intolerance but the anxiety was the worst.

Hi Leigh8, I was started on Florinef in the hospital and at my follow up with my gp he said you should have freqeunt monitoring of your pottassium until your dose is plateauted and then periodic testing on average once a month or so. I am supplementing with Klor-con 20 meq in addition to high pottassium diet however I was already hypokalemic to begin with so maybe u wouldnt need to be as proactive. Ive only been on the florinef for a month, so I have only had my blood checked twice. So far so good. Good luck and its worth checking with ur doctor about.

Thanks guys, your reassurance is priceless. I hate being sick and really hate meds ever since a really bad reaction to a med years ago. I am prescribed .25 so I will start with half and TRY to relax. Im one of those people who is calm on the outside but a complete wreck from holding all my symtoms in for so long. Im hoping it will be a mini "mental" vaca for a few hours just so I can recharge and keeping looking for the root of all this. Thanks for the advice !! {{{hugs}}}

Hi everyone, I thought I had seen a thread on xanax somewhere on here and I cant seem to find it so I apologize for starting a new thread if there is one already. I have a qeustion, my doctor has prescribed me xanax, I am a bit of a pharmacophobic because of my sensitivity to meds over the years, so I havent tried it yet. He wants me to be calm and try to use it during a tachy episode (which is all the time lol). I have never been one to take anything for the anxiety, physical or mental but I am sooo exhausted Ive been considering trying it. The qeustion is, how does it help u guys if u have tryed it? and because I always feel short of breath and on the verge of passing out or not breathing right does it surpress ur respitory system in anyway and make this worse or does it help? Also if u have low bp does it tend to lower it more? I dont wanna take one and find it makes my pots symptoms worse and then make my anxiety worse... Im such a mess and my doctor says TAKE IT and RELAX but i cant...lol <sighhh> TIA!! -sarah

Loved all of these,so can relate and really made me giggle.... Only one on the cardiac wing allowed salt Only patient your pcp has suggested adding potatoe chips to their breakfast routine

Yes to hair skin and eyes...mouth too if I dont constantly drink gatorade

Hi seattlerain, Thats it! Good description, I think thats exactly what Im experiencing. Its very alarming and quite annoying huh...lol Interested to know if your cardiologist had an explanation on it? Thx for your response!! Mytwogirlsrox, I am thinking thats a good explanation of whats happening, its hard for me to except all the cardiac "issues" , they are so unnerving, but that explanation eases my mind a bit..thank u!

Mines a tie for abdominal issues and heart symptoms (tachy, chest pain, pvc etc) Ive been dizzy so long I think Ive just grown accustomed to it lol

PS.. lumpchp....Good luck tommorow on your tests and look forward to hearing what turns up =)

I thought at first thats what it was, atleast I told myself thats what it was, but its a very different feeling. I get many many pvcs everyday, some I dont feel but most I do and have learned to adjust to them. Is it possibale it could be another kind of palpitation? do they feel different? like a pac? I was thinking maybe my heart was just overfilling or something when I sit down due to the change in bp? Dont even know if thats possible......im so sick of the cardiac symptoms ugh they unnerve me <sighhhh> ps. I was told my heart is structurally sound so hopefully its something that passes. lumpchp.... I read that post and found it amazing that I feel the same way when Im singing.I never even thought it was related. Maybe its just overexaggerated when Im moving from standing to sitting. So very grateful to have found this forum, I have never before even talked to anyone that has POTS....or heard of it for that matter...its hard suffering alone. =))

Hello everyone, SOOoo I was wondering if anyone else, after standing and having our usual tachy heart rates go to sit down and experience a feeling of their heart pausing for a second and then beating really hard and slow for a few seconds and that happening for 30 seconds or so...until ur heart slows a bit to a (semi) normal rate again. When this happens I see my heartbeat (vision is jumpy) and feels like my hearts gonna pop out of my neck even more so than the tachy does.I can hear my hbeat and it feels like it shakes my whole body. Sometimes it will happen when I take a deep breath, but not as bad ..a pause..then slow irratic beats..then speed back up and settle into a normal(ish) rate. I described this to my doctor today and he wants to just wait for all my meds to adjust to being upped again and see if it stops.He seems to think it is something with the POTS and not a concern. My concern however, is a sinus pause or arthymia but I am hoping its just my anxiety making me over think it or some kinda of bp thing...anyone else experience this feeling when their heart is trying to slow down??? Thanks - Sarah

Hi abbyw, Im new here and still have a lot to learn on whats related to my POTS and what is just quirks lol but SInce I was little anytime I am exposed to the cold I get red welts and very,very itchy especially on my hands, feet and legs. Ive always wondered what caused this reaction. As soon as I get warm (warm as I get anyways since I am always cold) they go away. Thought I was the only one lol Ive always suspected some kinda of histamine reaction like mentioned above.

Arizona girl, they didnt biospy and until canadiangirl73 mentioned it I had forgot what they called the "mass". It is a hemangioma or vascular mass. So that is good news. Canadiangirl73, I find it odd as well he didnt want to explore further and honestly, although he is a very caring doctor that literally held my hand and let me cry on his shoulder, he seems to be lacking in experience with POTS. I think he is learning right along side me. I am greatful he is not calling it anxiety like so many of us are badgered with hearing. I do however hope to find a specialist of some sort that can look a little harder. The liver thing was exactly what you have and before they knew what it was they told me I probaly have cancer and that explains all my symptoms. I could have rung his neck when it came back to be nothing to worry about.(although I was relieved) Like we dont have enough worrying us...<sighhh> I have wondered about periocarditis, but xrays and scans were all good, so maybe its just prolonged tachycardia, but it is worrisome that it could be causing damage. well, thank you for your responses, its nice to know we are not alone!

Thank u misstraci, it is so nice to be here, although we'd all prefer to not be I'm sure lol arizonagirl, thank u for your response. I am out now, thank goodness. The doctor told me after I addressed the labs that "I should not be worried, I didnt have a heart attack" well thats reassuring lol however he couldnt tell me why they were high and avoided the topic any further. I had a nucleur (sp) stress test, echo, iodine cat scan ( both oral and intrevenous, due to a mass they found on my liver, which turned out to be benign whew lol) I also had a colonoscopy (ugh) due to the gi issues and a 24 hour urine and other various labs Im sure. I absolutely will reqeust those records since they didnt exactly have good communication in the hospital. Good tip! I am so very interested in finding the connection to the hypo symptoms as they seem to be connected in some way, however my pcp doesnt seem to feel its urgent at the moment to look for an underlying cause.He feels my pots may be idiopathic, however I disagree. Frustrating to say the least to keep putting a bandaid on the symptoms. I have symptoms of hypo pots,massive allergic reactions, flushing etc; however other symptoms contradict ; low pottassium and bp, so I am at a loss They nevr have given me a reason for the syncope other than low bp, but what is causing the low bp??!! I am currently having my pcp pull my childhood records to see if there is a connection or pattern...hopefully it will help.. Thanks for your responses ladies and I hope you are all doing well and keeping your heads up, I went to the drug store today for the first time in 5 months, without passing out or chest pains!! ohh how I miss the little things

Hi, everyone, I am newly diagnosed although have suffered since I was 7 years old with syncope and its nice to finely find people I can talk to who may understand. Everyone I know looks at me like Im crazy..until I hit the floor that is lol Anyways, I was recently hospitilzed because the cardiac and gi issues are new symptoms for me and my body is rioting..upon looking over my records I see that my cpk-mb levels were high, which may have been why they admitted me to the cardiac wing for two weeks ( along with the resting hr of 170 and bp of 70/40 lol ahh) Does anyone know what, if any the corelation cardiac enzymes and pots could have??? Is my heart just ...tired ? lol Just trying to ease my mind ..Thank you!!!!