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About lieze

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  • Birthday 09/10/1966

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  1. If you want you maybe able to find your triggers and adapt your life to avoid them. And yes the reason we avoid certain things is because of what usually happens if we do it can just be difficult to know what will trigger us and what won’t and can vary from time to time. There are certain times of the day I get the feeling I am okay and can get active and get some things done for instance. I’m sorry you had that episode by the way. It can be a double whammy because rushing also makes you anxious causes your head to spin brings on anxiety and then the physical exertion on top of it so in these situations I wonder if we almost go into panic attack like results. My last time I tried to drive myself to the doctor similar thing where I was trying to make it across town. I was driving down a main road and all of a sudden it felt like I was going way faster than I was but I was doing some intense driving that I am quite sure was causing an adrenaline pump. Well at some point I think I just passed a limit that put me into more of a panic attack. MY heart was racing so fast it just felt like I would pass out. I could not function had to pull over and just wait. Finally called the docs drove in slowly then. They took vitals BP was up for me 130/70ish. I was still symptomatic not as severe they did an EKG and I was okay. I was able to drive home but have not driven since. I feel like I partially do this stuff to myself. I have difficulty staying calm which just makes it all worse.
  2. I’m not sure there is a way to avoid the feelings since it is probably a chemical impact to our brain. I may be off here but I think we need stronger support here of friends who understand and can encourage us through the tough times and cheer us on through a more personal chat line where whenever you feel off you can leave a message to the group chat and get a quick response. This group is a bit more formal which is understandable. I desire close friends who I can talk to either through text or phone.
  3. Yes definitely. I lose all hope. Feel doomed. Cry give up. I feel sad and down and hopeless and it lasts for 24-48 hours and then sometimes I forget and start over again.
  4. Hi racingheart. I understand how scary and concerning this can be when it happens. I feel so out of control of it when it does happen. It’s very similar to the experience when my heart just speeds up and sustains and feels like it will not slow down. I’ve been having these episodes too almost daily where I start feeling hot I start feeling anxious, I feel like I’m having adrenaline surges and my BP goes up. They really make me uncomfortable. I get a spaced out feeling sometimes nauseous and for a few minutes it feels like I will have a heart attack or my head will explode. Seeing the BP up on top of all the symptoms has really frightened me. Try lying on your left side when this happens. It could be a fluke but lying on my left side has brought it down for me. Also if you feel it coming on trying just lying on your left side for a while as a way to ward it off. I really hope it works for both of us and anyone else reading. My BP can move pretty quickly going down too from these what I am going to assume are flukes. I have now become almost obsessive about checking my blood pressures and a good majority of the time my systolic is between 110-120. I at least usually feel my best there. You might try taking yours at various times during the day so that you can show your doctor what your ranges are or the 24 hour monitor someone suggested might be nice for that also. I am not running in asking for a BP med cause I am still getting some 90/55’s and feel crappy sometimes when it goes that low. My last ER trip I was so worked up. I had my self in a frazzle and had gotten a 150 reading systolic. When i got in ambulance I was 140/70 and they just act like that is no biggie and I am neurotic. The thing is I had never seen BP’s that high before. So it make me a nervous wreck. But after I got into ER they were going to take me back for an X-ray and I felt like a cold sweat lightheaded felt like I could pass out almost a hypoglycemia feeling. Well when I got back to the room my BP was 105/55. I had dropped like a elevator going down. And most likely I dropped because it is not normal for me to be that high so my body was not going to sustain that. I just get worked up at home because I feel there is no control whereas in the hospital my feeling is there is help. Although giving me something besides maybe something to calm me down might be a bad idea. When it happens though I a am frantic to the point I think I experience panic. Not sure what is causing what. But I understand it is uncomfortable and scary. I honestly think if I could relax and stay calm I would be so much better even if I got a brief spike it would come down a lot sooner if I could just relax.
  5. I just had my OT discharge. I asked her to help me understand why I was being discharged. I told her how frustrating and bad Friday went for me. She said the PT therapist felt the same way. What this person did differently was explain I had met all their goals for me so they could not keep me any longer there was nothing else they could do for me. It does sound like conflicting info. The First Lady PT says they cannot keep me due to me saying no improvement then OT says I met all PT’s goals also and that is why they discharged. OT says she thinks I need to work as hard as I can and exercise my way out of the place I’m in now. But the ball is in my court and I am on my own now. So although it seems confusing the main difference between the first discharge and this one was the therapist took total control of the discharge. She did not ask a lot of open ended questions to me like the first person did. That just left me confused. Made me feel like I needed to come up with the right answer. Then when I did answer and the therapist responded the way she did last Friday I got both confused and frustrated. So it could be the decision might have been the same way but the way it was conducted just went bad. We both ended up upset it seems over the visit.
  6. I am so happy for you that you found an answer to your problem. I hope you do not have to wait long and that whatever type of fix they come up with for you helps you.
  7. Interesting. Lately in this flare I do best early morning hours to late night. I’ve been telling people I feel like a vampire. I can be having absolutely horrible symptoms feeling so hot I feel the need to strip down to my underwear, feeling sick all over, dizzy spacey headed, totally out of my gourd with crazy thoughts and feelings. The sun goes down and suddenly it all lifts. It doesn’t happen every time but more times than not if I am having a horrible afternoon by 8-9 pm I will get relief. I have tried staying in one of the darkest rooms and not opening shades to see if I can control it and it does not stop my symptoms.
  8. I am already trying to work hard on staying clear of any stress or drama.
  9. Are there natural ways we can work on those brainwaves that don’t have a hefty price tag attached. It makes me wonder how our brain waves are getting so messed up in the first place. What is it we are doing wrong that is causing the altered activity?
  10. Pistol I wish that would have been her approach. That she would have acknowledged that I was in a sorry shape but explain how the system worked and what she needed to be able to document in order to keep me even if it meant I didn’t fit the criteria. I didn’t sense any compassion at all from her. Everything she said to me she screwed her face up the entire time she was talking to me. I wish I did have video of it because it is just my word against hers. I tried to tell her when I was able to do those twelve minutes it was because I had laid on the couch for 2-3 hours saving up for that little bit of activity. She just nodded and told me to start coping with my illness. It’s frustrating when one of the things stressed to do for POTS is exercise. I pay for Medicare the extra $100 plus a month that is supposed to provide that service. That was another thing she must have said she was discharging me 10 times. The one time she said it I said well if I don’t qualify for service then not much you can do. She says it’s not that I don’t qualify. When I told her that I get so symptomatic when up she said well then just take a pill so you don’t feel those things while you are up. She had mentioned she had other POTS patients and I thought there was hope that she would have more understanding but I didn’t really get that vibe from her. I told her that I was at a place where I could not even come up with ideas for myself on what to do for myself and for instance a friend suggested I get RING doorbell so that if someone comes to the door I do not have to get up. On with the faces again and her eyes got as big as saucers. She had never heard of it but it was like I was talking to the wall. I just got the feeling everything I said at all entirely rubbed her the wrong way. The only thing I can think of is we live in one of the two country club ritzy areas in town. I wonder if she had an attitude related to our home and the fact I am on disability. If there was some kind of jealousy or attitude because of her continued comments insinuating I was trying to take advantage of the system. Also pointing across the street indicating I get a neighbor. Most of my neighbors work they are not sitting home all day. They also have their own family and lives. It would be so awkward to come and sit with me so I can work in my kitchen or walk around my house.
  11. I have no confidence to get through my eval with OT Monday at all. I worked in healthcare for 20 years by the way. I am a licensed practical nurse. I would think I could at least communicate well enough to get through this type of thing and I am just speechless.
  12. At one point she pointed across the street and suggested I get a neighbor to come and do these things with me. I said I do not have that. Does that seem odd that she would suggest a neighbor do PT with me. Just seems odd and unprofessional. Then she told me I really needed a hobby that I should try crochet,
  13. 🥵 It just went bad. I have a huge personality clash with the head of physical therapy from the home health service I chose. It made me wonder if this is what they do to keep their load light. Just cycle people through to keep the number of clients they serve low. She said well we have it here you were up for 12 minutes. That is all you really need. I do not know how to communicate well any more. I was not able to answer her questions well. When she asked if I was any better I said no. Well that right there she said well if I am not then they cannot continue. I said I do not know how to answer your questions in a way that I would qualify for continued help which then made her angry as if I was trying to scam the system. She said well I cannot lie. I tried to explain but I don’t know how to reply to your questions in a way that is representative of me and where I am at that you need to know and she just got more and more defensive about me having any kind of service. I told her the only way I have found to bathe is to just lean over my bathtub and spray my top half off. She said that is not safe. And I could not help it I said that is not safe but you want to discharge me? She told me she did not appreciate my tone or the way I was talking to her. So I spent the tail end of her visit apologizing. Thanking her for everything she did for me. Then before she left she said you know when I came here I really thought you were borderline ( I guess meaning I looked too healthy to need PT ) but she said I took you anyway. Now I will be going through a similar discharge on Monday with OT at which I guess I will just smile and nod. I’m tempted to just tell them when they start asking questions that I do not know how to answer them that whatever I say seems to be the wrong answer. Every time I answered PT it just seemed to get her going. She became argumentive and confrontational with almost everything I said and you should have seen her face. She was so oh my she just had this look all over her like she had some kind of issue with me before the convo even went south. Before she left I asked what I would need to do in the future if I needed services again and she said what do you mean what do you need to do? You need to need it? Talk about confusing. I felt like we needed an interpreter or mediator to even have a conversation. I’m afraid she will write horrible things about me on my report. She said she would write on her report that she was discharging me but that I did not agree with her decision. To which I nodded. She said well you baked a cake for your son on his birthday. She said some people can’t do that. And she threw up her arms. Like what exactly do you want anyway. She kept telling me to get out. I tried to explain I can’t get out and even if I did then I would be spent for the day most likely and I have a family to try to cook supper for. Which lately here I have not been able to do that. Or if I do it is much later in the day by the time I can get up. At one point when she said she was discharging me I teared up and I said in a very calm way that okay I guess I would just go on to the next thing and she in a really strange way said exactly what does that mean? Everything I said she cross examined like she thought I was faking the entire thing or something and was out to scam someone else. Maybe I should just be glad she will no longer be on my care team. Not that I have a replacement. But she seemed to just have this negative strange approach about her. I don’t understand what it was that set her off. She was the one who did my eval and she was strange then too but this one was much worse. I told her my goal was to get back to where I was 6-9 months ago when I had many hours of functioning per day and that now I am down to hardly anything. That I have had this for 10 years dealt with limitations already to have it just get worse and this bad is so discouraging. To not be able to bathe besides washing up. She says washing up in a sink that is all you need. Don’t you wish sometimes that people could live a day in your shoes so they would get it? I feel so frustrated that I cannot even communicate well enough to get my thoughts and reality out. I do think for whatever reason if I have these type needs again I will try going with a different agency. I can’t say I would want to give her a complementary review.
  14. I decided to sit in front of the tv last night. I did experience symptoms. Hot flash feeling dizzy etc but I tried hard to just focus on whatever I flipped too. It seemed to keep my thoughts from spiraling out of control.
  15. I do terrible on the hot days and I have turned our thermostat down to 71 to avoid symptoms. I don’t understand how the outside temperature can impact me inside when the temperature inside is cool but it does.
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