dannyg

I'm in the same situation. I find a doctor, at 1st they seem good, 2nd visit I hear " You have a nerve condition causing this there is nothing we can do". I in a way can't blame them cause nothing works for me. Sitting my BP is 135/90, standing it goes to 100/72. Meds either raise or lower BP so I fall in that in between are where either med would cause me problems. So Im not on anything. They cant control your Pulse and mine goes from 115 to 145 depending on what my body decides to do each time I get up. Last doctor I wore compression socks he said to use. 2nd time he said get the higher ones they are better. Im not wearing any. I notice when Im in a car or sitting for a long time going to doctors, my legs feel heavy and worse with them on. After half an hour my legs feel like they are lead weights and its harder to stand.

@katyroq This is an old post but I been having a cough like this the last few days. Does it still happen ? The cough. ?

Anyone ever have a Cyst on their bladder ? They found one on me Saturday in the ER when I went to have my bowel problem looked into. Scan showed it. Going to doctor today and going to tell him Im goinv to ER. Put me in hospital and do something wjth it. It dont make sense to make an appointment with a urogist which I cant drive to so he can tell me I need to have it removed go to the hospital. Anyone ever have a bladder Cyst ? And still no bowel movement ... Supposed to see a GI thursday. I cant drive.

Wondering. I wake up at night a lot and when I do my heart is racing. It is probably what wakes me up. If they put you to sleep for surgery what happens to you HR ? Im sure a lot of members had surgery with POTS they have them high heart rates at night. Was wondering if anyone might have thought about it or knows about it.

GP is in on Tuesday and Im supposed to see him. If I can drive. Will try and make an appointment with the one the ER told me to go see.

Has me worried. Came home, can hear my intestine making noise, not sure if Im empty now or hungry. Affraid to eat. Ate very little today. Have to call for a Urologist and GI doctor tomorrow. I know Im going to get agrivated tomorrow trying to get an appointment "ASAP" like the ER doctor said to do. And I would be a new patient caue I never needed a Urologist. My GI doctor I cant get in until Feb. 12. Will be another day getting frustrated on the phone tomorrow trying to see doctors.

Do Antibiotics affect BP ? Been taking Amoxicilian for 4 days and it seems my BP been running low. I got up toxay though and it was 130/115, then an hour later its been staying around 112/75.

Long story. Went today and forced myself to drive 14 miles each way to the ER for an xray and scan for my Constipation. No bowel movember for 7 days. Doctor had it set up and glad I went to ER instead of making appointments. I drove, felt horrible, got half way there and started worrying. Pulse stayed at 85 to 90, half way there it started staying at 105 to 110. I was ready to turn around and come home. I kept going, made it, walked in the ER, grabbed a wheelchair and was out of breath and shaking. I rolled in and told them what I needed, and they said doctor ordered the test they know what to do... I was glad. Had an xray and scan with contrast. They gave me the hospital stuff to cause me to go. Nothing worked at home. Horrible, cleaned me out pretty good. Yellow diarhia. Horrible. Drank a lot of water to. Felt better. Doctor comes in... Says I have a 4cm cist on my bladder and its probably been there a while see a urologist. And see a GI doctor for my intestine issue. No blockage. Not a diverticulitus flare up. My PCP gave me Antibiotic yesterday in case it was diverticulitus but Im going to keep taking it anyway just to be sure. I asked him if it could be Hastroperisis, he just said to see the GI doctor. All the 16 mile ride home I was scared, nervous, worried about my Pulze, felt like my heart was pounding and racing, ran in the house, stood up, checked my Pulse and could not believe it was only 90. Crazy, sometimes I get up, it shoots to 150. I ran around like a nut, and it was 90. I felt pretty good Ssd part ..... It all started back in November when I went to the doctor for my yearly check up, told him It was tender in my lower left side, he have me Cipro, No test, nothing. Gave me Cipro. Then all the symptoms of Pots started popping up. This ER doc told me Cipro is bad, can cause esrs to ring, and mess people up. I told him it started with my ears ringing, then lighy headed, then them "attacks". Now I have POTS. I still believe it was that Cipro. So when this started, it started as tenderness in my lower left side, took Cipro, hospital 6 times since, found out I have POTS after all the headaches, head pressure, and all the symptoms, and I still have the tenderness in my lower left side that started all this in November. Was never a bladder infection, it was a cist all along.

Was wondering .... How long have you had POTS ? Has the symptoms got better since you 1st got POTS as time went by ? How much are you able to do ? (Drive, stand, walk, shop, get out and about) ? What are your Pulze and BP readings ? I been stuck at home. Can get around maybe 2 minutes standing or walking. Sitting, my legs get heavy and have to lay down after about 1/2 hour. Makes it hard to get to appointments even sitting in a car and then office. BP is all over. 145/95 to 103/72. Pulse laying 85, standing 110 high as 150. I get pressure in my head and ears ringing standing to long. Some days 10 minutes 1 time, some days 1 minute. Light headed when standing. Was everyone worse or better and at least get around a little more as time went by from when they 1st got POTS ? Thank You

Post back and let us know how it turns out.

I hope so and hope I can wait that long. Still no bathroom ! And I havent been diagnosed and didint have diabetes 2 weeks ago last blood test, but been waking up in the morning very cold and shaking. I eat a little and then feel a little better. Any ideas ? Havent been eating much, and before I got POTS I would wake up hungry, but never shaking and cold.

Made an appointment and as usual ... cant get in till mid February. Can never get to any doctor when I need to.... Frustrating.

Any thoughts on the Bowel Movement problem ? Doctor thinks it's not really related to a POTS issue. He said POTS usually causes people to go more, not less.

Question. Take the Mitrodone before or after eating ? And it says laying down can increase BP to high to be carefull. I have to lay down most of the day ... Now Im worried. Dont want to bring on a "flare up'". BP usually runs a out 130/88 sitting and walking now

Went to a new doctor today. A GP - Endocronologist. Seems to now more about POTS and is willing to listen and accessed all my records and checked everything out real good. He said basically the same thing about me and meds. Im to all over tbe place with readings with my BP to give me an exact medicine. I also told him I havent been going number 2 much. Sunday morning, and not much today. I can hear my Intestine churning, nothing flowing. I did have a flare of Diverticulitus bad 5 years ago that blocked me up. I asked him if it's POTS related, he said likely not. Maybe my Diverticulitus again ? Not sure yet. Said to call him in a few days if it dont clear up he will give me an Antibiotic. I was taking Florenef which I had bad problems with raizing my BP to much, so this doctor bas me starting on Midodrine 1 in morning, 1 in afternoon, 2.5 mg. I hope it don't do what Florenef did and raise it to much. Is Midoxrine milder and easier on the BP than Florenef ? Neighbor took me to the doctor, when be called to say he was warming up the car and will be out front in 10 minutes, I "panicked" and was so worried if I could walk to much, didnt know the place, how far I would have to walk, and sat down to wait for him and I could not cstch my breath or stop my pulse from skyrocketing. Its been running 150 all day standing up, and I have to walk to the car, and walk after that ? I was ready to call his cell and tell him I cant make it. I get in the car, shaking the whole 30 minute ride, sipping on water, clammy and nervous. Get to the building, good thing it was ground level, walked 100 ft. and I sat down breathing and looking like I was gonna die. They wanted to weigh me... I told them I cant stand up I will pass out. They take me in the room to check my vitals. The girl left and said doctor will in shotly. Sat there 10 minutes shaking and legs feeling heavy. Good thing he had that table thing i the room. I had to stretch my legs out so Iaid down for 5 minutes and got up right before he came in. Leaving I was feeling better and could stand for about 2 minutes at a time. Dont know if it was a "full attack" or not, but sure felt like it for about 2 hours.

Veins pop out a little. My hands are normally white like your top picture. Blood pressure is up, they turn red right away. If I see my hands looking red, I check, and 90% of the time my BP is up. Seems like anything over say 145/ 95, my hands turn red. Arm I never really paid attention to.

Check your blood pressure when that happens. Last week affer taking that Florenef to raise my BP I felt terrible and my hands were real red. When my BP is high, my hands do that.

Since December I was in the hospital 3 times and emergency room 3 times. I got so scared everytime I drove myself there. I think it made it worse cause me driving in full attack was a bad idea when I think about it. Everytime, I got there felling worse cause I made it worse by exhausting myself more instead of laying down and waiting it out. I would have been better off laying on the couch because everytime I went to the hospital, all they did was take an EKG, check my Pulse and BP, sat me in a wheelchair cause I was shaking so bad and exhausted, then would tell me my Pulse is 100 and BP is 120/90 so Im ok. Im not ok ! I cant breath right, stop shaking, or stand up at all ! Then they take me for an xray and expect me to stand up like nothing is wrong. Then back to the waiting room, 3 hours later to the ER room where I lay shaking watching my Pulse go to around 105 just moving my hand, they stick an IV thing in me, I lay there no IV or anything. Then the doctor comes in, tell him whats wrong, he leaves, comes back 2 hours later, tells me either "your blood work is ok we cant keep you" OR "we will keep you for observation". So then I get taken to a room, they wont give me anyghing to drink, all this time my mouth is so dry, and by the time I get in the bed ... I feel better ! Last time they kept me there 4 days, did nothing while I laid there. Worse part was, when they keep me, they put me on a Cardio diet.... NO SALT ! I need something with salt sometimes with POTS to keep my BP up just just a little. Then they check BP and Pulse laying, sitting, and standing 8 times in 24 hours, and as time goes on and Im stuck in bed, my standing BP drops more than it ever does when I do get up. I"m always saying to myself "why did I waste time coming here, they are doing nothing". And the last time for 4 days I was really upset cause the last 3 days I felt pretty good but was stuck in the bed in the hospital.

I have to talk to the doctor about that. He dont want to give me something to lower my BP because sleeping and laying in the hospital bed it drops to about 95/70. He gave me Metroprol 1 day, then have me that Floro pill that raises my BP. He based it on my having a low BP laying in bed. His theory is "raise BP that lowers Pulse". To me, I can control Pulse right away by sitting down. Taking a pill to raise my BP I cant control and that put me in the hospital last time and triggered an attack.

I'm going to have to start paying attention to see if there are any "triggers" that cause them. Today I started out weak and not feeling good, but pushed myself and did a lot of walking and keeping busy today. I'm wore out. Head hurting, ears ringing, but It turned out to be a decent day. Going to get a Oximeter soon also. My BP is all over but never really that "extreme". It ranges from 95/70 to maybe 150/100 at times. I get light headed, and the head ache and ears ringing, and I can work through that. The Pulse is what I need to watch so I know when I have to sit down. Smoking .... Im going to experiment with. One thing I noticed when I was when Im in the hospital and cant smoke, after 1 day, I walked around with the monitor on me and my Pulse was pretty regular 90% of the time. I could stand still, it would go up to about 115, then come down and pretty much stay between 90 to 105 for about 5 minutes. I didnt try and push it more than 5 minutes. At home, smoking, it goes to 135 and up all the time. Going to see if not smoking helps the Pulse. And .... going to keep records of BP and Pulse during the day sitting and standing to see exactly whats going on.

They dont have me on any meds yet. They had me on that Floro something. That shot my BP up way to much and I ended up in the hospital. The 4 days I was in there nurses couldnt figure it out. 1 time I stand up, BP goes down. Next time they check standing up, BP goes up, next time it dont change. Im all over the place. Sometimes Pulse goes to 105 and stays there and comes down, sometimes it shoots up to 135. Thats why he took me off the meds. I do have to learn my limits. I havent been going much just going from room to room then sitting down. I get ears ringing and head gets stuffy anything over a minute of standing. Then I have to lay down for a while. I need excercise but Im affraid to "push it" to much. These attacks seem to happen mainly at night when Im laying in bed wanting to go to sleep about 10pm. I been affraid to check my BP and Pulse, the mubers scare me but Im going to have to start doing it and keep a record of it so I can try and get a better idea of whats going on so as usual, I can explain it to the doctor. No compression socks yet. I will have to order some and get them.

Thank you. I do get scared. I need to learn my limits and not stress myself out and panic. Like you mentioned, all I have is bills, and 3 trips to the hospital, and 2 times admitted once for 3 days and once for 4 days, just laying there no IV, wasting time. By the time they get me in a room after being moved around, almost passing out trying to stand to take dumb xrays, driving to the hospital, all that stress actually makes it worse for me. Everyone here is the best. Thank you everyone. Better than any doctors I have seen so far..

I was just wondering. How often do some of you get "Flare Ups" where you cant move and your shaking. I guess thats how I can describe them. Do they happen less frequent as time goes by ? And what do you do ? Do you just lay back and "ride them out"? Just wondering because since I had been diagnosed about 2 months ago, I had 5 bad "episodes", drove myself to the emergency room, and basically sat in a wheelchair shaking and feeling horrible for 4 or 5 hours until they took me in a room and really did nothing. I csme out of it myself. Last time they gave me an IV, put me in a room for 4 days and all I did was lay in thr bed. Wondering if I should "ride them out at home" or what to do. I think when they happen, I panic more, try and grab what I can, drive to the emergency room, and tbat might be making it worse raising my Pulse and BP even higher. What would you do ?

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.

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 ???