Jump to content

Jan

Members
  • Posts

    316
  • Joined

  • Last visited

Everything posted by Jan

  1. I have had POTS for 14 years and am presently 55. I manage with Florinef and Lorazapam. I spent the first two years almost bed bound. I have improved over time, learned how to manage and cope and feel pretty stable now. I never was able to return to work, AM's are still very difficult for me and I tire easily. But I can go to the store, sit through a movie (with caffeine and getting up at least once) and can go out to dinner on many days. (OK, maybe not all in ONE day) There are good and bad days, still have plenty of days I don't do anything because I feel too dizzy but I don't have that overwhelming feeling that I am dying. My blood pressure is pretty stable now. Lack of sleep will make that day and the next day a home bound miserable day. As will getting over heated. Menopause has helped get rid of the monthly roller coaster and the most of my migraines. If I can move around and force myself to get some exercise, a walk or a swim, I feel better. Overall, I think I am still improving or just learning to cope better.
  2. Florinef and Midodrine are not similar at all. Florinef retains water in the kidneys and there fore raises blood pressure evenly. Blood pressure should stay higher when laying down or standing up. It stays in the system quite awhile, so you should get a more even blood pressure. The body releases the same hormone in the body in the AM so it is recommended to take it in the AM. Some people report it keeps them awake at night. Midodrine is a vasoconstrictor and raises blood pressure quickly by constricting your veins. It is very short acting, and you can't lay down when you are on it or your BP can go too high.
  3. My advice is the opposite of the getting up early. Getting up earlier makes me feel worse. And makes me feel worse all day, I never adjust when I have to get up early. My advice is sleep in your clothes and get up at the last minute. Take a cab or beg a friend for a ride. After lying in the dentist chair, you will have to readjust to being upright and having a driver will help on the way home too. I take Florinef 4 hours before I get up and then go back to bed. Drinking some tomato juice or other salty thing before you get up should help too. If it isn't an emergency appointment, I would just reschedule for later in the day.
  4. Dizzy, thank you for the info. I know I feel really horrible if I have a virus that causes me to use the bathroom a lot, but then I am also dealing with a virus so the prep has been scaring me. This is just a routine test for me that everyone is supposed to get at age 50 and I have put it off 5 years so far.
  5. I have a colonoscopy scheduled for late December and am really nervous about the prep day making me feel horrible. Can I ask what you used for prep and also what they used during the procedure and were you aware of what was going on during the procedure?
  6. I get up around 7AM and take Florinef. Then I go back to bed. When I get up at noon, I take my second dose of Florinef. I feel OK, a bit dizzy but get better within the first hour. I usually just sit, drink some Diet Pepsi, and check email for the first hour. If I have to get up in the AM for an appointment or something, I feel really dizzy and nauseated. This does not get better during the day. I am fatigued and dizzy all day. Then the next day I usually get a migraine. As a result, I try to never get up in the AM.
  7. The BB made me sicker the first day I took it. BB are supposed to slow the racing heart. I need my heart to race to prevent fainting when my blood pressure drops. After a week on a BB I couldn't even sit up without fear of fainting. I think BB work for people who's hearts race and THEN their BP drops to slow the heart. A friend of mine was on one and he was back to normal within a year. Florinef didn't work for him, because his heart raced and THEN his BP dropped. If your BP drops and your heart races to bring it up, then a BB will make you worse. It is hard to know with your son on so many different meds. what would help him. Was he started on all of them at once or were they gradually added?
  8. I also had to a psychiatrist to get on SSDI. He asked me questions about how I was dealing with my illness. He was nice. He doesn't work for SS, so he has no pressure to try to deny you benefits. A person can actually get SSDI for depression, so it wouldn't be the end of the world if the doc found you to have some depression. And who with a chronic illness doesn't feel depressed sometimes? Just relax, and be honest.
  9. My son goes to college and there is a girl at his college with a service dog. He found out today she has POTS and the dog barks when her blood pressure goes too low. Isn't that interesting. Because my son is so shy, he would never ask her about it, but I would be curious how she found a dog trained like that, and what she does when it barks etc.
  10. I started exercising with a recumbent bike. I could only do a minute or two at a time on a low tension. Eventually, after a year or so, got up to 30 minutes on a higher tension. Made my legs look good too. I also got a referral to PT. I asked the PT for leg strengthening exercises I could do laying down. He adapted a bunch of them for me. I also bought those weights you put around your ankles and used them to do leg lifts. Being able to exercise was a very slow progression but I am convinced it is why I have a sort of normal life now. I was told I had to retrain my body to being upright. Getting the legs stronger made it easier for me to walk. I also live right by the "Courage Center" which is a place for handicapped people and they have a pool and I just sit on a floating noodle and move my arms and legs around. It is great. I find walking easier than standing. And the stairs still raise my Heart Rate, especially when carrying laundry. I think it must be the laundry that causes the problems...lol My advice, start slow and try not to get discouraged. Talk to your body, you are on the same team, "Yeah body, let's see if we can do another 10 leg lifts". Seriously, I did that. I read you have to love your body and not be mad at it, and when I read it I thought it sounded stupid, but then I realized I was kind of mad at my body.
  11. My BP was always all over the map. If it was really low, (top number under 90) I would feel horrible but sometimes I felt fine with low BP and bad with high BP. Then my BP cuff broke and I never replaced it because I found I had gotten obsessive over the numbers and let them scare me. When it broke, it was like going through withdrawal, and then it was a relief. I sometimes think it is the dramatic change in numbers that gives me symptoms, and not the actual numbers themselves. I agree with the above advice, try not to to let it stress you, even healthy people can have readings that change a lot in a day.
  12. I always felt better on BCP's. Some raise your blood pressure and my doctor specifically looked for some that did that for me. While on them, my BP was higher and my monthly cycle didn't make my POTS worse, like it did when not on them. I took them without the 7 day break to avoid monthly migraines. I am now in menopause and that is even better.
  13. As a rule, hot flashes that a person gets in menopause usually only last for one minute, maybe two. I find sometimes with POTS if I am unusually hot for a period of time, drinking tons of water helps. I think for me it might be dehydration. I would think that the bodies ability to regulate heat would fit with all the other things POTS can cause.
  14. That seems like a lot of Vitamin D, could that be thinning your skin? The upper recommended limit is 4000IU a day.
  15. I was on BC pills for many years. I really felt it helped the ups and downs of POTS. I always got more symptomatic right before and during my period and that went away when I was on the pill. I used to take them without the 7 day break to avoid menstrual migraines. Now I am in menopause and it is GREAT.
  16. When I first got POTS I lost a lot of weight and couldn't eat. I tried Ensure but I found it thick and yucky so I started drinking Slim Fast. It about the same thing as Ensure only more liquid. Also, I could tolerate ice cream. I find smooth and liquid things go down better when I am not hungry or nauseated.
  17. I am on .2mg and it helps lots more than .1mg and better than .3mg.
  18. Here is my understanding of POTS. For some people when they stand up, their blood pressure drops so their heart races to keep them from fainting. Those people are more likely to be helped by Florinef since if it increases the blood pressure, the heart won't have to race. If these people take a beta blocker, it will slow the heart and make them feel worse since they will be closer to fainting without the heart helping increase the blood pressure. The beta blocker can make their blood pressure drop way too low. For some people, when they stand up, their hearts race and their blood pressure drops to slow the heart rate. These people benefit from a beta blocker, since it slows the heart, the blood pressure doesn't have to drop. You may not even know which happens first until you try one or the other drug. I would suggest dropping one and trying one at a time. It could be the two interacting with each other causing you issues. Beta blockers made it so I couldn't even stand up and gave me horrible headaches because my blood pressure dropped so low. I love Florinef. It took a few weeks to help and months before it really helped, I think my body had to adjust to not having the sudden swings in BP/heart rate. I started on .1 mg once a day, went up to .2 after a couple of weeks, then when I got up to .3 at first things were much better than not, so my doc dropped me back to .2 which is where I have been for many years.
  19. I find it best to eat many small meals. Otherwise I feel sick.
  20. Eat lots of Potassium with Flornief. Milk, tomatoes, bananas, and potatoes are great. I have been on Florinef for 10 years and get checked every year and so far, no problem, I get enough in my diet. I drink a lot of milk. I can't stress that milk is actually better for electrolytes than sports drinks, and less sugar. At one time the American Dairy association was going to try to push milk as a sports drink but didn't because it requires refrigeration.
  21. Can you call a local church or the county social service agency and see if they have any volunteers that can help? Maybe even the local schools, a lot of kids need volunteer hours for things like scouts and college applications.
  22. I have lesions on my brain. When they first saw them, the doctors told me I most likely had MS and even gave me prednosone IV. I then had a spinal tap which didn't support the diagnosis. I was told by the doctors that lots of people have lesions and never have a neurological problem. I wish I didn't know I had lesions on my brain.
  23. I don't know this for sure, but I tell myself that raising my heart rate is like aerobic exercise and that is good for a person. I also think if you do it enough, your body will learn how to deal with it. My heart rate doesn't go as high anymore. At least I don't think it does, I don't check anymore. I can understand using the pulse oximeter and how it can be a comfort but also a stress. I used to take my BP often in different positions and log it and log how I felt. I was pretty surprised how it wasn't a good indicator of how I felt. When it was REALLY low, I felt light headed, but sometimes when I felt horrible my vitals were pretty good. I used it so often, the rubber bulb wore out and I never got a new BP machine. It was like being released from prison. After my BP machine broke, when I felt really horrible, I would kind of panic and think, "Oh no, what if my BP is really low?" But then, what would I do if it was? Nothing. It really hit me when you talked about how scary it was after you learned what your vitals were. It was like that, only in reverse when I stopped taking my BP. It used to be if my BP was really low, I would start to feel sicker, even if I was doing fine before I took it. It was like getting over an addiction at first, it was hard not knowing my vitals. I am not sure if it is the meds I am on (Florinef and Lorazapam), or if it is because I forced myself to exercise, or if I retrained my body, or what, but I am doing so much better than I was 10 years ago. I do still have to talk myself into going places. Often I kind of chicken out, "What if I don't feel well if I go". And if I don't go places I want to go, I will have a little pity party all by myself. If I have a ride, which helps if it is an evening event, I tell myself, I will feel the same if I am home or if I am out, so why not go out. I would love it if you up date me on how you do with this. I am cheering you on.
  24. I can really relate to what you have described. I was afraid to go anywhere alone for a long time. Then my husband left me and so I had to do things alone. Here are the things that helped me. I got a "cane chair". It looks like a cane but has a tiny seat attached that you could pull out. It was my security blanket for check out at stores because that is where I would feel dizzy from standing still. I rarely had to sit, but having it made me feel better. People were really nice to me when I would sit down in the check out line. I just said I had low blood pressure. I got a medical bracelet where I could put a bunch of info in a tiny little compartment, that made me feel more secure in case I fainted. I have never fainted, so I adopted this mantra, "I have never fainted, I am not going to faint in the store" I would say it to myself over and over when in a store. I did increase my Lorazapam, and instead of taking it once a day before bed I started to take again in the AM and it made me brave. Interestingly, when I drove, when I felt the most anxious was when I was at a red light. I think they just proved it was anxiety and not just POTS that was making the trip difficult. I didn't have time to worry when the car was moving. I told a doctor at the Mayo clinic how I felt fine walking around the house but if I went for a walk in the neighborhood or a store, I was really dizzy. She told me that we can retrain our bodies to be upright and to adjust to things and that the more I walked, the better my body would be a able to deal with it. I think she was absolutely correct. Forcing myself to leave my security zone has made a world of difference in quality of life for me. Staying home just fed the fear of leaving home for me. Short trips to the store became long ones and now, as long as it is a good day, I can do quite a bit. If I feel dizzy at a store, I just have my little mantra "I can do this". I still have days I don't go anywhere, but to have days where I can go places alone is such a gift. I still have a hard time driving very far on the freeway, but I can often drive 40 miles or more which is really huge for what I was like at first. Every time you go to the store, or the school and make it home, it should make the next trip easier. Since it is easier for you to do these things when someone is with you, you KNOW that at least part of the issue is anxiety and fear. You can do it. I know you can. And you will be less anxious every trip. Anxiety or POTS never killed anyone. The one thing I will say is at one point I had to pick my kid up from school 3 days a week and I HATED it. I always had to have a back up plan in case I didn't feel well and the pressure that I HAD to do it made it harder for me. It was the trips to the store, where I could pick the time and day that made the transition to doing stuff alone easier. Good luck.
  25. Everyone reading this, stop, and go back up everything important on your computer RIGHT NOW. You don't have to get robbed to lose everything, sometimes a storm or a computer failure can rob you of important stuff. NO, don't go read another post, go back up your stuff, on a cloud, or some disks or an external hard drive. Same with your camera.
×
×
  • Create New...