dannyg Posted January 16, 2019 Report Share Posted January 16, 2019 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. Quote Link to comment Share on other sites More sharing options...
dannyg Posted January 16, 2019 Author Report Share Posted January 16, 2019 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 Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 16, 2019 Report Share Posted January 16, 2019 So I take my midodrine on an empty stomach. Midodrine can be used as needed. Make sure your last dose is at least 5 hours before bed. And don't lay down on it. I take up to 5mg up to 3x a day. Honestly I usually take 5mg in the morning and sometimes 5 hours later. I have taken the full dose but that was when I went on a family outing to the Ark. Beware the tingling. It is weird but no one warned me. If I hadn't seen it on here I probably would have freaked. It is harmless but weird. It ups my BP by about 10 points bottom and top summers. It counteracts my Beta-blocker perfectly. I do notice that it helps my non-heart related symptoms nicely. This medication made everything a little better when it was added to my Beta Blocker. Be well. Quote Link to comment Share on other sites More sharing options...
dannyg Posted January 16, 2019 Author Report Share Posted January 16, 2019 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. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 16, 2019 Report Share Posted January 16, 2019 I have IBS which I believe is common in pots I have constipation, growling stomach and bloating . Really have to watch what I eat , veggies that have sulpher such as sprouts cauliflower really set me off . As does carbs wheat and sugars . I take midodrine 7.5 mg X3 or x4 times a day. I can lie down because it doesn't affect my BP , but I know it is a concern, you can rest with pillows to raise your body or use a recliner chair and check your BP is ok. I was told to check my supine bp regulary and it's never been a problem but I was very low 60/40 as I have improved it tends to be higher .I am one of the lucky ones I don't have any side effects from midodrine it really suits me and has improved my life no end ! Just remember it is important to keep your fluids up. Have you looked into mindfulness ? I practise it every day and has helped me enormously in so many different aspects of daily life. It made a huge difference in my insomnia which then helped the fatigued and it was a slow progress but gradually that had a knock on effect of improving the severity of symptons. Meditation and deep breathing help my addrellin rushes which cause my body tremors and feeling of nauseous. It was not a quick fix and takes dedication to stick at it, but for me it was worth the time and the effort in the long term. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 16, 2019 Report Share Posted January 16, 2019 5 hours ago, dannyg said: 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. It can be either way. I used to even get it at the same time. I would set up a GI appt to make sure there is nothing wrong. Quote Link to comment Share on other sites More sharing options...
dannyg Posted January 16, 2019 Author Report Share Posted January 16, 2019 Made an appointment and as usual ... cant get in till mid February. Can never get to any doctor when I need to.... Frustrating. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 17, 2019 Report Share Posted January 17, 2019 22 hours ago, dannyg said: Made an appointment and as usual ... cant get in till mid February. Can never get to any doctor when I need to.... Frustrating. I have been trying to get my son into my specialist. Just got rescheduled again yesterday. Have been trying to get him in since October. It will be worth it though in the end. Quote Link to comment Share on other sites More sharing options...
dannyg Posted January 17, 2019 Author Report Share Posted January 17, 2019 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. Quote Link to comment Share on other sites More sharing options...
Help4Me Posted January 17, 2019 Report Share Posted January 17, 2019 Hey Stayathome mom.....Dr. SAWYER is moving back to Lexington area.....or moving there..I don't know if he lived there before.....so he will be closer to you now....he referred me to a new cardio .....I am sad he is leaving louisville.....just thought you might like to know..... Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 19, 2019 Report Share Posted January 19, 2019 On 1/17/2019 at 1:55 PM, Help4Me said: Hey Stayathome mom.....Dr. SAWYER is moving back to Lexington area.....or moving there..I don't know if he lived there before.....so he will be closer to you now....he referred me to a new cardio .....I am sad he is leaving louisville.....just thought you might like to know..... Yes!!! I miss him. I will have to check and see if he is coming back to Lexington Clinic. The PA he referred me to when I left is a good cardiologist, but not so great with POTS. Quote Link to comment Share on other sites More sharing options...
CarolineEJ Posted January 27, 2019 Report Share Posted January 27, 2019 On 1/16/2019 at 3:29 AM, dannyg said: 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. My understanding is tha POTS can lead to gastroparesis. Basically, your bowels slow down and stop working. My daughter’s bowels have been working much better since she got an NJ tube and takes fluids through the tube at night. Quote Link to comment Share on other sites More sharing options...
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