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Hoshistorm

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Everything posted by Hoshistorm

  1. Becia, I too am in a wheelchair inside and outside of the house. It has helped a lot with the passing out. I also struggle with being out in public, especially with being around people who do not know me and do not understand what is going on. I prefer to stay home or go places with a small group of people who know me.
  2. I am on Metoprolol 50 mg. I find that it really helps me. Thank God for it!! When I started it, I had been averaging 2 ER visits a week. Then within a week, I was feeling soo much better! Not 100 %, but a lot better. It cut my ER visits down to about 1 every 2 months or so. After that, my Cardi doc prescribed 0.05 mg Florinef. Those two pills are life savers. I still have symptoms on a daily basis, but they are more manageable. I am still unable to work, but at least I am not house bound or bed ridden anymore. Life is still a challenge- making sure I do not overdue it, have low-key days in-between days where I have visitors or events. However, without Metoprolol and Florinef I would be miserable every day.
  3. I'm sorry to hear that Gerri. Thank you for sharing though. Chiara
  4. Last night I went to Disney on Ice with a friend. It was fantastic! I got home about 9:15/9:30, took a shower, and took my meds by 10 (my usual time). My meds include two types of sleeping pills. Since being on them I have never had the problem of insomnia. However, last night I was still wide awake at 4 AM. When I finally did fall asleep it was really restless. Today I feel very achy, tired, weak, shaky, nauseous, and overall very symptomatic. Does anyone else have the problem of not being able to do things later in the evening? Thank you!
  5. Severe depression and PTSD (same time as repressed memories surfaced) are what caused my POTS. My Rx is: PTSD, Major Depression, and POTS (Tachycardia with syncope spells). My blood volume tends to get really low quite often.
  6. Thank you for sharing this! Congratulations on managing your POTS! You are a motivation for us all. Thank you!
  7. Oh my goodness! I cannot believe how much it helps to have an IV of fluids! I feel much better! Now, I just need to keep a balanced schedule so that I stay that way.
  8. Hello, I recently moved to a bigger city. I have been trying to get out and do more, however, my POTS (which I thought I had managed) is making it very hard to get out more than two days in a row. I am not even going out and doing big things! It is sooo frustrating! I had an episode Sat. night at church, then Sunday I went with a couple of friends to the mall for a few hours. The rest of Sunday I was exhausted, and on Monday all I did was sleep. How am I supposed to get POTS under control? What have you found best schedule-wise for your POTS? Thank you! P.S. Sorry about the complaining....I just needed to get it out!
  9. Thank you all for your posts. I will definitely have to give your suggestions a try! Have a great day!
  10. Does anyone else have the trouble of not having insurance? The worst part is paying for meds. I have found for all of my meds except florinef. Does anyone know where I can get florinef without paying an arm and a leg? Thank you!
  11. I am not sure which one to select either. I have had symptoms as far back as I can remember, but also have experienced trauma as far back as I can remember. That I know of, no one in my family has any symptoms. About a year and a half before I was diagnosed I went through a major ordeal; repressed memories of trauma had surfaced. My doctor thinks that is what made it flare up. So, for me it is both previous history with no family history and trauma.
  12. I have pots and have had symptoms of it my entire life. I was not diagnosed until last fall, however, I have gotten a lot better at managing it. It was very debilitating last fall. My doctor does not think mine will ever completely go away, however, I have been working with her to manage the symptoms. That is a blessing in itselt; being able to manage it and live with it. You just have to achieve balance, and be very aware of what causes symptoms to flare. I wish you the best of luck! Don't give up!
  13. I am currently in College for my BA in Psychology. For me, doing online college is best for me. I attend Ashford University Online, and am currently sharing an apartment with one other person. My friend knows that I have POTS and is very good about giving me quiet time and extra rest. Ashford University's full time online program consists of taking one class every five weeks. This works great for me because I only have to focus on one class at a time. When I first started, I had been having a lot of problems with POTS. However, I was able to work on my school work without leaving the house and on my own schedule. Some days I did not even crack open a book because I was soo sick. Also, Ashford is very good at working with people who have medical problems. They have an application that you can fill out about your illness, and they will work for you. I am sure other Online University's have a similar setup, you would just need to research them. I chose Ashford because it is accredited nationwide, and the setup works well for me. I wish you the best of luck in finding a good college.
  14. For me I need to have iodized salt because it helps raise my blood volume. I tried using plain salt but I kept having my symptoms flare up.
  15. I have been taking Metoprolol since I was diagnosed in August of 2011. This medication has been very good for me. I have POTS, and for me my HR goes way up and my BP goes down. I take Metoprolol along with Florinef, and it works great for me. I still have spells, but it is usually related to something else such as overheating, not drinking enough water, or not enough salt. However, since taking this combination I went from not being able to go anywhere, to being able to go places safely. I just have to make sure that I have extra water and salt, and make sure I do not overheat or get too cold.
  16. Yes! I have had this problem for a long time! I have been diagnosed with POTS and I think it is part of that. I get weird looks from my teachers and other people because they think I am bored with what they are talking about. I am glad to know that I am not the only one!
  17. I started taking it about 1 week ago. I have seen a difference, it has helped me. However, I am also dealing with processing trauma at the moment. I had an apt. with my therapist on Friday, which led to digging up a lot of stuff. I was bawling in her office. Then I talked to two good friends = bawling again. Lastly, I talked to my mom for 2 1/2 hours on the phone = really really bawling for almost the entire time 9 though it really helped to get it all out and let her know how her actions/lack of actions have hurt me). Needless to say, yesterday I was really achy and exhausted! OMG it was terrible! I felt almost as bad as when I took the TTT! So, it is hard to say at the moment how well the florinef is working, because I also have major trauma to deal with.
  18. My doctor just suggested it. I do not have Celiac's disease. I have not been doing too well on it since Friday. I am just going to have to buck up and stick to it. I am just going to have to keep envisioning myself feeling better. LOL Thanks for the tip.
  19. Thank you all for your posts. They are really helpful! I live in a house with 7 other roommates, and we share cooking duties. So, at the moment it is a little hard to be totally gluten free. However, I am taking steps towards becoming gluten free. I wish all of you luck who are in the process, and I thank all of the ones who have done it for your encouragement. I hope you all have a wonderful weekend!
  20. I am sorry to hear that NMPotsie. I hope you find something that works for you! Thank you for posting.
  21. Thank you very much Misstraci! I really appreciate it!
  22. Hello. I just saw my doctor today, and she told me it would really help if I went Gluten Free. Does anybody else have that recommendation. Also, anyone know of some good Gluten Free recipes? I would really appreciate it. Thank you!
  23. I will have to pay attention to what time of day works better. Thank you for sharing. I hope things work out for you Rosette. I noticed too, I do not do well in hot and humid weather. Thank you for sharing!
  24. I just took my TTT last week Friday. My doctor already had me on Metoperal before that test because he was 100% positive that I do have Dysautonomia. So, during the test, after only standing up for 8 min or less, I passed out. My pulse was below 35 and my BP was not readable. He said that not only is my pulse and BP going really low, he also said it is going very high. (I had a heart monitor on for 2 days the previous week). So, he put me on a water retention pill. He said I am not retaining enough water, also I do not have enough salt in my system. So, he gave me permission to eat a half a jar of pickles a day (I LOVE pickles). Also, he said to drink a lot of Gatorade, and add salt to a lot of my food. I have been doing this since last Fri (starting by eating a plate of pickles right after the test). I was wondering do you have a BP and pulse that goes way high and way low? Also, do you have to take a water retention pill? Thirdly, on the water retention pill and added salt, do you still have light headed spells and symptoms? I would appreciate comments and suggestions. Thank you!!
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