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dannyg

Newly diagnosed

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Is it normal to have bathroom problems with POTS ? I drink a lot of water, maybe urinate only 2 times a day, still feel thirsty lot, and I go number 2 only every other day. Is that part of POTS  symptoms ?

 

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POTS can cause either - diarrhea or constipation. Try fiber, that helps immensely. However - having a bowel movement every other day is normal , some people do not go every day.It is NOT normal to only urinate twice a day while drinking a lot - is your urine dark or pale yellow? This can indicate whether or not you are dehydrated. Push fluids anyway - and mention these symptoms to your doctor. Be well!

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2 hours ago, Pistol said:

POTS can cause either - diarrhea or constipation. Try fiber, that helps immensely. However - having a bowel movement every other day is normal , some people do not go every day.It is NOT normal to only urinate twice a day while drinking a lot - is your urine dark or pale yellow? This can indicate whether or not you are dehydrated. Push fluids anyway - and mention these symptoms to your doctor. Be well!

I have been told if your pee is colored like apple juice or beer it is too dark, you need to drink more fluids. If it is lemonade or lighter you are okay. 

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19 hours ago, dannyg said:

Is it normal to have bathroom problems with POTS ? I drink a lot of water, maybe urinate only 2 times a day, still feel thirsty lot, and I go number 2 only every other day. Is that part of POTS  symptoms ?

 

I agree with @Pistol that you should pee more. I hope you mean two times a day more since starting to make an effort to drink more water.  Can you keep a diary of your poops and pees for a week? It will give you a good idea of your own pattern. I have a BIL who goes once every three days, like his brothers and father and uncles.Hhe married my sister who can poop every time she pees (me too, and our mom and aunts). You cannot change your genetics. If your bowel movements are dry or hard and you are straining then use some glycerin to initially help but adjust your diet by increasing with easily--digestible fiber. A bowl of cornflakes helps me as much as a bowl of raisin bran--whatever works for you. Feel better soon!

 

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Thank you everyone

 Still in hospital laying here waiting for heart doctor.  Today he is in his office now till 2pm I think. Im not taking anything he gives me to raise my blood pressure like this Fudrocortisone. My hands were red as beets yesterday, head pounding, machine couldnt even read my blood presure it was so high on the diastolic pressure, then I paniced to get to the hosital, felt like passing out, laid in the ER with an IV shaking, cold, and so weak.  

I notice today, didnt take the pill, the IV .must have helped cause I can stand for a long time and pulze only goes to highest 105, then will go back down to about 90-95.... I drink a gallon of water a day but they said I was slightly dehydrated, but not that bad... Going to start drinking gatoraide or something. Seems I need more than just water... Vitamins ? Not sure.... 

Might be getting rid of this heart doctor. He is only in his office 1 day a week.

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Dannyg your exact story is very very close to mine.....I woke up one morning in JUNE with all the symptoms you said...only mine was more severe right away...I was in the hospital for 2 weeks while they tried to figure it out....I did have the TTT and was DX with POTS....I was fine the day before this happened to me.....I have been to the ER over 20 times in the past 6 months for the exact thing you are there for at this moment....I have had 6 ambulance rides.....for a few days I slept in my car in the ER parking lot....I was and am extremely ill....I have never seen anything like this disease in my life....I too have ongoing Urinary tract infections and other infections....just found out VIA a MRI that my pancreas is bad....it has atrophied..from Chronic pancreatitis......I am not sure if that is what is causing my POTS...but please ask them to check your LIPASE LEVEL while you are at the ER this time......since you were drinking alcohol when this started and also you said you had upper left ab pain....just ask them to check your LIPASE and do a CT of your abdomen....to check for pancreatitis.....infections seem to bring on POTS...or make POTS worse......it is worth a shot to ask them to check it....I feel sorry for you....I have talked to over 20 different people around our age that have suddenly come down with this illness in the past 6 months time......also NEVER take CIPRO again...it is a horrible and toxic drug and could be part of what started this as well......write back and let us know how you are doing.....

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Doing good. Laying here and upset. No answers as usual. Regular doc stops in tells me "you have a bad heart, somethings wrong, see the electrocardiologist". Heart doctor comes in, told him in not taking that pill to raise my blood pressure it put me in the hospital. He says when I stand my pressure drops, at night it drops so he wants to raise it. Now he zaid just use salt, no pills. Extra salt on food. 

So after 7 weeks, 3 trips to emergency room, 3 times in hospital, probably $30,000 in bills, Im back to square one with any answers. This group has been the biggest help to me more than any doctor so far... Im upset. 

 

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1 hour ago, dannyg said:

Doing good. Laying here and upset. No answers as usual. Regular doc stops in tells me "you have a bad heart, somethings wrong, see the electrocardiologist". Heart doctor comes in, told him in not taking that pill to raise my blood pressure it put me in the hospital. He says when I stand my pressure drops, at night it drops so he wants to raise it. Now he zaid just use salt, no pills. Extra salt on food. 

So after 7 weeks, 3 trips to emergency room, 3 times in hospital, probably $30,000 in bills, Im back to square one with any answers. This group has been the biggest help to me more than any doctor so far... Im upset. 

 

I have a cardiologist and an EP, they work in tandem. The doctors are giving you good advice. I am in the process of doing that very same thing--having my blood pressure slowly raised upwards--been working on it over a year. The purpose is so that when I do have a sudden drop in pressure the starting numbers are higher. That means the BP drop isn't going to drive the numbers so low I collapse and smash my face on the ground. Within the last year I warded off collapsing at the curb and falling into the street, I got dizzy but I didn't go down.  If your blood pressure is dropping and makes you presyncopal or you are fainting then you may need to raise the higher numbers. Fainting is the gateway to broken bones and chipped teeth, you will recover from the faint in minutes, not so much the damage it does to you body if you land on something hard. There are many ways to even out what you are feeling so you can be comfortable and not collapse--adjusting drugs, what you eat and drink, and exercise are most of it, and with give and take it will be tweaked to you by your doctors. This is not a fast process but it works. Feel better soon.

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I agree with @WinterSown - I am currently mostly contolled but still feel the impact of my falls ( concussions, broken ribs and sacrum, scars … ). I understand the concept behind wanting to raise your BP - but you need to check your BP several times a day faithfully to make sure it is not going too high. 

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Thats what I was trying to tell the doctor. Most of my day its around anywhere from 130/85 to 150/98. Sure he is looking at it here in the hospital me laying in bed all day it does drop low for me, and a little lower and sometimes higher when I stand up. Im all over the place with numbers. Yesterday was bad when I seen my hands so red and BP out of what the machine could read. Im tired of being in and out of the hospital and emergeny room every 3 days.

 

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@dannyg - you hit the nail on the head: when we are in the hospital we are flat down on our backs, all readings are normal. Hence the POSTURAL ORTHOSTATIC part. When I am bad and in the ER my VS are usually not too bad - so I ask them to take my BP and HR when standing. That is always the turning-point: either high BP and HR or seizures or syncope. NEVER a normal reaction. We have to demand them to take readings while standing up!  

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I wonder if the the medication he gave was just too much. I thought my midodrine would do that to me because it does raise BP. But that with my metoprolol averages out fine. My midodrine is a 5 HR drug to use as needed though. Have they tried you on a small dose beta blocker yet?

From what I am understanding IV fluids seem to help everyone on here that has tried. Have you found an autonomic specialist in your area yet?

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I’m sorry you are going thru this and understand and relate to your frustration. I hope you can find a doctor who has expertise in Dysautonomia, unfortunately doctors who understand Dysautonomia can be few and far between. If you haven’t been to the Dysautonomia International website check it out, it is a great resource. If you click on the patients tab you will find a link that will help you connect with a local support group. If there is a group in your state reach out to them to get recommendations of doctors in your area.

 

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What is it that causes these episodes that put me in the hospital ? Is it the High blood pressure ? The high pulse ? The Adrenelene Rush ? 

3 times, 4 emergency room visits in 6 weeks, and all they ever did was take blood, xrays, have me sit around or ad.it me for 3 days 2 times just to be in a room doing nothing, then they let me go still with my pulse shooting up, just enough to go home and in bed. Now, 3 days Im here, doing nothing, waiting for doctor to do nothing.  Yesterday and today are the 2 days I felt my best in 6 weeks, and Im stuck here doing nothing. 

 

 

 

 

 

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@dannyg - it might be that you are feeling good b/c you ARE DOING NOTHING!!! Before I started home infusions for POTS I was in the hospital every 6-8 weeks with hypertension, syncope/ seizures, unable to walk, tachycardia etc … and yes - ER would usually just do labs and EKG and either tell me to go home and follow up with my PCP or admit me for Observation. And every time I received IV fluids and rested - and soon felt much better. The problem is that most hospitals do not know WHAT to check for. And even if they find something ( tachycardia, hyper - or hypotension, syncope etc ) they do not know what to do about it - or whom to refer you to for follow-up care. From your previous posts I see that your BP on average is running high -while in the hospital have they started you on any meds for this? Sometimes they keep you to see what certain meds do and how you respond to them. 

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No meds at all. Cardio doc says no meds. Salt and plenty of liquids.  BP laying here in hospital been running about 110/70. They are keeping me because tbey habe me filling up some urinal thing. Some 24 hour sample colleection I think she said.

 

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1 hour ago, dannyg said:

No meds at all. Cardio doc says no meds. Salt and plenty of liquids.  BP laying here in hospital been running about 110/70. They are keeping me because tbey habe me filling up some urinal thing. Some 24 hour sample colleection I think she said.

 

Good they may be checking your urine for catacholmines and/or sodium. If you have HyperPOTS that is a totally different treatment. 

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Have they checked your b12 ?  Being a regular drinker, Alcohol Can make your stomach not  absorb the b12 in foods. Along with other vitamins. If it is low you need injection as taking pill form will do no good. 

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@dannyg - the 24 hour urine sample also may be for pheochromocytoma. This is good - anyone with your symptoms and elevated BP should rule this out. It is an adrenal tumor that can ause these symptoms and can be surgically removed. That means they are taking your symptoms serious and do not want you to start any meds until after they have the results. Best of luck … and a piece of advise if I may do so: don't hesitate to ask them questions I am surprised that they have not told you what they are looking for!!!

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@Pistol ....  Thanks. They just came in last night and said the new doctor ordered this test. He is an Endecronologist. Good PCP and heart doctor told me go home last night, see them in a few weeks, just drink water and if anything happens call 911....  Im trying to get rid of both of them. My PCP probably caused thiz for me with his take 3 500 mg. Cirpo back around thanksgiving. Now he tells me I have a bad heart. Him and the Heart doctor are good friends,  but contracdict each other and are doing really nothing usefull for me. 

This endoconologist with this test seems to be at least helping trying to find something. My heart and regular doc, all they always tell me is the hospital dont like to keep people on o ser ation, so they juzt come in and want to send me back home more confused and sicker than when I came in. 

Last week, the the heart doctor was coming around. Him and the PCP I want to get rid of. They released me from the hospital at 7pm. I had to drive home dizzy, about to faint, pulse at 145...  They were going to do it last night at 7 the nurse called them and asked to 2 goofs how are they supposed to do a 24hr Urine thing the other doctor just ordered if I go home.  

Told heart doc I need a slip for wheelchair just in case cause I have some bad days and cant stand more tha. 30 second. His answer .... We dont want you to uze a chair, excercise, move around, I lay in bed to much thats why.... Wow ! Im frustrated. They have no idea.

 

For 3 days Im telling everyone here Im not going number 2 much at all, when I do it hurts and mustard yellow. 4 days all I hear is "thats strange", from the goof doctors. Yesterday the cardio do. Just blew it off and changed the subject. 

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Im in the room with the monitor on. Im watching it today and one time I get it the pulze goes up to 120 and it flashes "multiform pvc", next time it says "missed beat", and pulse goes up. Few minutes ago  I had a flashing red "v tach". What the heck is going on ? Is this normal with POTS ???

 

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Unfortunately, when in a hospital, you need to advocate for yourself.  I know this is hard when you don't feel well.  But it is your opportunity to get all questions answered by various specialists.  Is anyone with you who can help with that?  They should respond to all of your questions--it sounds like the reason you are there is to obtain a diagnosis.  If you are not getting answers you should talk to the nurse to see if she or he can advocate for you.  Hospitals are busy places and the patients with the most severe situations and/or the more demanding will get more attention.

PVCs and PACs are common in POTS patients (feels like a missed beat).

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They let me out of the hospital last night at 8pm ! I asked the nurse if any alarms were going off when I was seeing these things pop up on the heart monitor and she said no, nothing that is to be concerned about. Normal PVC's and PAC's.

My 2 doctors the PCP and Heart doctor are pretty much useless. One comes in and tells me to ask the other one, he comes in tells me to ask the other one. I have an appointment to see that Endocrinologist next week and wondering If I can even make that appointment to drive or get a ride. I have my nephew that lives across the street but I cant keep bugging him all the time. I guess to get the results of the 24 hour urine test and see what he says. I live alone which is a problem with something like this now.

I'm trying to get things done a little at a time but things are not going good. The Heart Doctor I asked about a wheelchair, he said see my PCP. He came in, and was out the door so fast I had brain fog and forgot to ask him about a wheelchair. I called today and a company and nice lady there told me have the PCP fax over a script from the doctor, she will get the ball rolling for getting me a wheelchair. I call the doctors office and go figure, he decided not to be in today. My Heart Doctor is only in 1 day a week on Wednesdays.

My PCP really had me upset. Wednesday he comes in the room and tells me not to move around to much because when my Pulse hits 120 it alerts the nurses and that bothers them. Then yesterday he tells me I should get a dog and that will give me exercise. He is telling me this POTS is a Heart Problem. I have a problem with my heart. I told them 4 times in the hospital I don't want him anymore, send me a different doctor, but no, next day, here he comes walking in my room.
 

I'm frustrated, and just wish I could get to a point where I can stand up for 2 minutes to get around. From wheelchair to car, car to where I have to go, then to wheelchair to get around for a little while. Today I'm really feeling "brain fog", ears ringing, and slight head pressure. 

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