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Holly

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  1. I'm new to the boards here and trying to learn more about what you folks were talking about here. I just had an MRI this week for neck pain. I got a call today that I have some moderate degenerative disc disease at C5-C6 and cervical spinal stenosis. I tried to follow some suggestions for links to learn more about if this could contribute to my newly diagnosed POTS. Are the cases people are talking about mostly congenital or degenerative? I'm feeling a bit overwhelmed, with another thing on my plate, and just wondering if the two could be connected. If you guys could give me any suggestions or links to more info. (I'm pretty computer illiterate so I apologize if I couldn't figure out the other links) I would greatly appreciate it! Holly
  2. I was just started on a beta blocker two weeks ago. After just a couple of days, I started having muscle pain, joint pain, numbness and tingling, extra dizziness and was extremely exhausted. The doctor cut the dose in half and I'm still extremely tired. Like my arms and legs are too heavy to move, it takes too much effort to chew so I have to take breaks while eating, too much effort to even brush my hair tired. I'm new to this POTS thing, so I'm not sure if fatigue is gonna be my main POTS issue or if I'm just having a humdinger of a reaction to the beta. I was diagnosed with POTS and put on meds. within 3 weeks of my first symptoms, so I'm unsure of what is POTS related and what is drug side effect related at this point. I've never been this tired in my whole life and it's kicking my patootie for sure. I'm on a super low dose of pindolol, only 2.5 mg twice per day. Seems like a very low amount to be feeling like I got hit by a bus. I'm wondering if anyone else has had this experience and how long I stick with this beta before asking to switch. One nurse told me 2 months, but I can't imagine feeling this drained and tired for two months. Yowza! It is controlling my tachy, which is a good thing. On the plus side I might lose weight if I'm too tired to chew. Hee hee. I've got a call in to the doctor, but with the holiday weekend I figure I might not hear anything until next week. Any opinions would be greatly appreciated. Have a great Labor Day weekend! Hooray, the worst of the summer heat is gone. Holly
  3. I've wondered this myself. Last time I went to my cardio, he said my numbers were "great". I said, well then why don't I feel better. He had no answer. Kinda frustrating. I was hoping that once BP and HR were stable that I would feel so much better. Not so much yet, but I'm still hoping. Holly
  4. What about some frozen dinners? Not the lean cuisine kind, but the regular stuff. My husband eats a lot of those and I noticed that they can be high calorie and high salt, even in the smaller portion sized ones. Plus, they are easy to make. I'm all about the simple, microwave life. I wouldn't eat them all the time because I don't know that they are that healthy, but I would think it might help you gain some weight. I have the opposite problem from you because I gain weight by just looking at food. I know that either way, it's not a fun place to be. Good luck and I hope you feel better.
  5. Interesting that you brought this up. I had laproscopy on June 28 and was confirmed to have endo. My POTS symptoms started right after the surgery. I didn't have problems before. It would be interesting to know if the endo. made me more susceptable to developing POTS or if it had nothing to do with it.... Holly
  6. Hi everyone, I was just prescribed a beta blocker (pindolol) last Thursday. I've been taking Midodrine for about a month. I have been feeling more tired than usual (if that's possible), worsened shortness of breath, muscle achy and some joint pain. The muscle and joint pain is new since started the new med. I called my cardio yesterday, to see if that was normal and when to expect to have side effects go away or need to be switched to a new med. The nurse was not very nice, saying that I need to stop looking at med. side effects (like because I'm reading them, I'm getting them?!?), just relax and that I will feel overly tired and fatigued for 2 months while my body adjusts to the meds. That seems like a long time to me. Has anyone ever been told that or had that experience? Maybe I'm just hoping to feel better too soon.... Holly
  7. I've never taken any beta blockers before, so this is a first for me. I really don't need any insomnia, already have that going on.
  8. Hi everyone, Thank you to everyone who responded to my last post about being new here. It is SO very helpful to know that I am not alone in this fight! I am currently taking Midodrine at a very low dose. Today my cardio suggested that I start taking pindolol, to help control tachy. Anyone else have this drug? I'm nervous about starting anything new, since I've had some unpleasant reactions in the past. Thanks for all of your input. Holly
  9. HI everyone, I found this wonderful website through an internet search. I've been reading a lot here and decided it was time to post. I was just recently diagnosed with POTS. I had laproscopic surgery for endometriosis at the end of June and my symptoms started in early July. Thankfully I was sent to a great cardiologist who suspected right away it was POTS, so I was diagnosed only about two weeks after symptoms started. I'm really struggling with this illness, as it is all new to me. I have dizziness, nausea, tachy, sleep problems, blurry vision, tingly sensations, brain fog, and extreme fatigue. I am on a high salt diet, lots of liquids, compression stockings, Midodrine and swimming for exercise (when possible). I know there are some folks here who are far worse off than I am, but I am still struggling. I feel like my life has changed overnight and things that I used to take for granted are now far out of reach. I am grasping for any straw of hope, to help me get through this. My cardio said that 80% of folks who have sudden development of POTS get better within a year. I have read differently in some posts here, so I know that is no guarantee. I don't know if I need to hope that it will go away or just focus on getting through each day. I just feel lonely, scared and discouraged. Every day is so long and such a struggle to get through. I have to continue working to maintain health benefits, which is tough. I know I need to find and maintain a positive attitude and I just don't know how to get there from here. Anyone have any suggestions? They would be much appreciated!
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