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Everything posted by Mistri_The_Squirrel

  1. Do you feel like you can trust that D.O. not to think it's in your head? I feel like the nurse practitioner I am seeing now has probably heard it all, so I'm not too worried about her thinking that, but the nurse I mentioned earlier in the thread treated me rudely...so I guess I have to be careful what I say to which person in that office. My family is very dysfunctional, and unfortunately I don't have a spouse or boyfriend. I really don't have friends where I live, and it's hard to go out and meet people when you always have to worry about when your next pre-syncope or syncope episode
  2. I can totally relate to this. I've spent a lot of time taking my blood pressure and HR and noting when I would take my meds, to see if there was a pattern. Other than the fact that one med raises my HR and one brings it down (which I already knew), I saw nothing. I thought for sure that if I was diligent and studious I would be able to see more in the way of patterns. I'm still thinking there must be some sort of sense to be made of it all, but I just can't see it.
  3. Good grief!! Talk about a doctor being in denial!! That is pure craziness. But they don't have to deal with the discomfort of being ineffective if they can pretend they aren't. I know what you mean about not talking to people about it. My sister does not understand what "my problem" is, and she told me I just need to try harder to get well. She also told me what a burden I am on the family. I feel like there's no point in trying to explain things to someone who seems like they would be happier if I didn't exist. I'm glad my mother was in the room when I had my tilt. Otherwise
  4. I thought maybe I was going to have to go to the ER recently. When I was grabbing a clean t-shirt out of the drawer, I made sure to grab, "If You Don't Talk to Your Cat About Catnip, Who Will?" Because who wants to deal with someone who has no sense of humor?
  5. It is my understanding that weed tends to raise your heart rate and lower your blood pressure. When I was younger I used to smoke it and found that it would raise my heart rate. So I'm not sure it would be a good idea for me to do it now.
  6. I have been thinking a lot about this lately. Today I threw out a couple of old concert t-shirts that have holes in them. It was unpleasant to do that, as I was feeling very nostalgic about them. But I've told myself that it's time to get rid of some of the excess. I can't take care of it all...I can barely take care of myself.
  7. Keeping fish tanks is something I used to do quite a bit, and it was very therapeutic for me. I had more than one, and while I was focusing on pruning plants in my planted tank or trouble-shooting something wrong in my saltwater tank my mind was on that problem and not my health problems. Unfortunately, I don't know when I will be moving next, and filling up a 75 gallon tank and a couple of 20 gallon tanks is not something I think I should do. And it's enough to try to keep up with the one pet I have. Maybe when I'm feeling a little better? It would be great to have the distraction
  8. Maybe I should be seeing a D.O. I think doctors who don't know what to do about what's wrong are usually going to pretend like there isn't anything wrong. So having no quality of life is just another part of the problem they refuse to see. It's much easier to pretend like there's no problem than it is to admit you aren't up to the task of solving the problem. I am trying to have a positive attitude about everything because I feel like it helps me, and I feel like nothing good will come from having a bad attitude. But sometimes I am overwhelmed by how bad I feel or by the ****** re
  9. Have you thought about seeing an osteopath or a naturopath? I've been told I should consider going to a doctor who is an osteopath (a D.O. rather than an M.D.) because their approach is more holistic. I don't know if that is something you'd want to do, but it seems like it would be worth a try if the new doctor winds up not being what you need. There is definitely a quality of life issue with this stuff. I'm kind of in a spot myself, because my antidepressant aggravates my POTS, but I can't stop taking it. I need to have a working antidepressant to function. I'm pretty much out of op
  10. Well, there are store brands of Ensure, and I think there is a powdered version. It's not mac 'n' cheese cheap, but it's so much better for you than stuff like that.
  11. I'm glad you have someone like that in your life. It is so hard to have to deal with this stuff without that. This may sound kind of lame, but one thing that has helped me relax is listening to guided meditations on YouTube. Of course, you have to find one where the person doing it doesn't annoy you. Some of the people doing these things have annoying voices or sound like they are talking to a kindergarten class. LoL Anyway, I like to put a sheet mask on my face and listen to an Australian man with a soothing voice tell me that everything is alright. It sounds silly, but it does hel
  12. Exercise is definitely a great thing to do if you can tolerate it. I used to walk a lot. I can't do that anymore. But I am doing some strengthening exercises, and my mother has a recumbent exercise bike that I can have if the two of us can manage to get it over to my house. It would be great for you to be able to get your test soon. Then you'll have some answers about precisely what's going on and what can be done about it.
  13. It's pretty hard to understand some of the reactions from doctors. I guess most of them haven't had to deal with something like this in their own lives, so it's like some sort of abstract concept to them to think about how it would feel. And it's frightening to think that the experts haven't figured out what's wrong. I'm glad you have a doctor who is dedicated to helping you. I feel like it would be comforting to have someone who isn't going to stop looking for answers. I hope you have gained some comfort from it, anyway. My own situation is that I don't know how dedicated my nur
  14. I have not been diagnosed with hypothyroidism, even though I have signs of it. My mother and both of my maternal aunts have thyroid problems, as do others in my family. But the times I have had TSH, T3 and T4 tested, it comes back "normal." Have you checked out the "Stop The Thyroid Madness" website? If not, you may want to do that. I'm in the process of figuring out what to do, as apparently a lot of people are told they do not have a thyroid problem and later find out they have Hashimoto's.
  15. I have areas of my body that feel bruised, even though there is no bruise to be seen. It's not every inch of me, just some areas. And I've noticed that I am very sensitive to certain things that other people wouldn't be. Sometimes I will hit my finger on something and it will be excruciating. But I know I didn't hit it that hard. And my lower legs are always numb and tingling, and sometimes there is a burning sensation in my feet. (Already been tested for MS, don't have that.) I don't know how long the lower leg thing has been going on, because I was on Cymbalta for years for d
  16. I had a really strong craving for cheese curls/puffs last night. I can't think of the last time I've had them, and I don't think there was any advertising or media that caused me to think of them. Yet there they were, planted firmly in my mind. I don't even like them that much. The flavor is too much for me. Does anyone else find that certain foods are just too flavorful, and you don't like them for that reason? It sounds like a weird thing to say, "sorry, I don't want it, it's not bland enough," but that's how I feel sometimes. And yet, other times I crave things like that.
  17. Ah. It sounds like things are complicated for you. For myself, I do wonder if this is going to get worse as well. That has been the trend. One thing I've noticed about doctors is that most of them seem to have a flow chart mentality. And if your symptoms don't fall into their scope of knowledge, or if their flow chart doesn't provide a clear answer regarding what to do, then that means you either don't have a problem or you have a mental health problem. There doesn't seem to be an acknowledgement that maybe they just don't know what is going on and what to do about it. And many a
  18. Oh, hey, I'm on that list! Thanks for the welcome, @Clb75!! I was just diagnosed with POTS in December, but I've been having symptoms for awhile. I have also been dealing with chronic moderate to severe depression and anxiety since I was a kid. The situation is that my antidepressant is working, but it aggravates my POTS. And I don't have much left to try as far as antidepressants go. So I'm on the lowest dose and trying to find relief for my POTS. After I was diagnosed with POTS, it didn't take long for me to learn that there was no easy treatment or fix. I had really tho
  19. I'm newly diagnosed, so I don't have a lot of advice to give, but I've found that it's good to keep some Ensure around. I drink that when I'm not up to eating regular food. It's also easy to take with you in the car or have when you are too busy to prepare food. I think they have a high-protein version too. You can get it at the grocery store, Walmart or the drug store. As far as brain fog goes, my antidepressant has helped with that. I was having a lot of fatigue for awhile, and I got some blood work done. My thyroid levels were normal and B-12 was okay too, but my vitamin D w
  20. I don't have the symptoms you're having, but I want to tell you that chronic heartburn is something not to be taken lightly. As @Pistol mentioned, acid reflux can cause the lining of your esophagus to become pre-cancerous. It is called Barrett's Esophagus and it can be treated...as long as you know you have it. Taking medication for your heartburn will not prevent esophageal cancer if you already have Barrett's. The only way you can know if you have Barrett's is to get an endoscopy. It is important that you consult a gastroenterologist about this, as they are the doctors who will
  21. I have a 24 oz. glass bottle that I keep with me. I fill it with water, add a 1/2 teaspoon of salt and add 5 squirts of Mio Electrolyte drops and shake it up. I drink that throughout the day. Before I was even diagnosed with POTS I was already in the habit of keeping a bottle of water with me to drink wherever I went. If you want to get in the habit of drinking fluids all day, you may want to keep a drink beside you at all times. Set alarms on your phone or on some other device to remind you to drink it every hour or so in case you forget. Once you have been doing that for awh
  22. @RecipeForDisaster If you don't mind me asking, why were you afraid of it? Were you afraid of it because of the possible digestive symptoms? (That's why I started low; I didn't think there would be anything else to worry about other than the digestive stuff.) It does sound like it could be quite dangerous for you to not have that IV fluid. I wonder why the nurse at my nurse practitioner's office was acting like POTS is not that serious. It sounds like it can get quite serious for some people. Was getting to that severity of POTS a gradual progression for you? I started having p
  23. @statesof I can't tell you how glad I am to read this!! Thank you so much for responding!! I appreciate it more than I can possibly tell you. I think I will be giving the Mestinon another try, I'll just go about it more slowly and stay at my Mom's just in case. If it doesn't work out, it doesn't work out, but I feel like it will be worth all my efforts if it ends up helping me. I do wonder if what happened to me had to do with the fact that I'm on Pristiq and Klonopin. Like maybe the interaction of Mestinon with the other drugs caused it. Are you on any medications like these? No
  24. I'm going to make some calls and find out more about getting IV fluids if the need arises. I am pretty sure the Pristiq I'm on causes me to have low blood sodium, and I have to compensate for that with salt tablets (Pristiq is known to cause low blood sodium). I have had chronic moderate to severe depression with anxiety for years, and I'm just about out of options as far as meds go. I wind up in crisis if I go without medication for too long. I need to be on something, or I will not be able to take care of myself. So I don't think getting rid of Pristiq is an option. I stay on the
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