Jump to content


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

2,229 profile views

friday7's Achievements


Newbie (1/14)



  1. Thank you statesof and ks42.It think I have a better understanding of this. I will try what you suggested about the doctors. It's really hard for me. I have social anxiety, so making phone calls in general is really hard for me. But I am at that point where I feel I have gotten all that my present doctors are going to give. I will have to learn to call doctors office asking questions. It's very hard because you don't get very many people willing to take time with you. I know I have to persist. It's just hard.
  2. Thanks for the answers everyone. angellozI have been tested for other autoimmune diseases so far nothing. I have had a couple of Neurological tests done lately. I had a cat scan, an EMT I think it's called, and a tissue punch test. The last one I haven't gotten a result from yet. Most of my treatment has consisted of getting my BP up with Salt tablets. That helped quite a bit. And after I had my oophorectomy that helped a lot as well. But these Neurological symptoms. They weren't that bad at first. But now it seems they are worse and aren't going away. My Dad had Neuropathy from Diabetes and what I feel sounds just like what he described. Being that people with POTS also have these issues I find it hard to believe that's not what this is. ks42I find it very interesting that there are too two main nervous systems in your body. I wonder if the tissue punch test and the others I had can help diagnose something wrong with the autonomic nervous system? I knew they say POTS is a dysfunction of the autonomic nervous system but I didn't realize that they mostly test the other. I will have to gather up something to support the facts I am learning about POTS. How do you find a autonomic specialist? Well actually I should say one that takes Medicaid. That's the trouble with getting help too. Medicaid covers the bare minimum so it'd be hard to find someone that would specialize in that I guess. statesofYes one of the problems I have is getting treatment from one doctor. I am being sent to specialist to specialist and I know the GP is supposed to put it all together but they don't. They treat me as a healthy patient that has a lot of separate problems. I have a question about the tilt table test though. I thought that test was mostly to diagnose POTS. Is there other information they can gather from it? Also what happens when a normal person stands up? I mean I know that people with POTS heart rate raises 20 to 30 BPM within 10 minutes..what does it do in others that don't have POTS?
  3. I'm trying to understand this because I'm really having a hard time with Neurological symptoms. Is P.O.T.S. a neurological disease or not? It is listed as a Neurological disorder on the National Institute of Neurological Disorders and Stroke site. I know it falls under the category of Dysautonomia. Yet all of the neurological specialist I've seen have said I do not have Neurological problems because I do not have a neurological disease. The first two had never heard of P.O.T.S. I recently saw a new Neuro. I started seeing her when I was getting numbness in my legs. I also was getting trouble breathing and burning mouth. I have gotten a lot of neuro type symptoms off and on over the years. She is very nice. And she is really trying to help me. She's done all kinds of tests. And seems to really believe I am having physical problems., yet she is not taking me on as a patient. She is doing one more test. Problem is she's done a lot and hasn't found anything. So she is not going to treat me unless she finds something. Problem is I have something. Just not something she can find. I told her I saw a Cardiologist but that I have all of these Neurological problems, how can I get that treated. She said usually Cardiologists treat P.O.T.S. I asked her, how is the Cardiologist suppose to help me with the neurological symptoms of P.O.T.S. when she does not treat those things. Never mind the fact that the Cardiologist has said that basically the only thing I could do was take florinef , mestinon and salt and that's about it. I am getting the feeling that what is really going on here is they don't know much about P.O.T.S. Which is a problem because they've been the nicest and most knowledgeable people I've run into in years. Nothing much shows up on tests. But I have been diagnosed with P.O.T.S. So why isn't that enough? It's like they are looking for a disease to treat when I already have one. I've very confused how you get Neurological symptoms treated when you don't have what they want. I know some of you see one. How did you get them to treat you? Some Neuros have made me feel that they should not be treating me. One guy said I was 'cleared" for Neurology..Tell that to my burning mouth and numb leg. When a Neurologist says you're clear it does make you think, I guess he's right. So, Is P.O.T.S. really something that they should be treating? I know that I have Neurological symptoms but how do I get help with them? I have a real thing Called P.O.T.S. yet I honestly don't feel like I have anything because everyone acts like they should not be expected to treat me. Sorry if I'm ranting just fed up today.
  4. I just think everyone is so connected these days, I think virtual support for people that can't get out much, makes sense. I'm glad to see others feel this way as well. Although you can get support from an online group it's not the same as talking in person. I wish I could start something myself but I just don't have it in me. I've been sick all week so I haven't really looked into this any further but I did see, that in the online community, "Second Life", there are areas specifically for people with disabilities. For anyone that doesn't know, "Second Life" is a virtual world. It's similar to online gaming in that you create an avatar and interact with people in real time. I don't want to link to it because I don't know the rules on listing that kind of thing, but you can Google it if you are interested. I'm new to this myself so I don't know much more about it but it's interesting. I'm glad to see that is has places specifically for people with Disabilities. I can see it being of value to people with Chronic illness.
  5. Hi. I was having a hard time again lately with keeping my BP up and getting infections and I felt upset because I didn't want to be stuck in the house again. Then I thought about a you tube clip I saw once about a woman who used Second Life as a place to teach some of her students that were physically disabled and I thought what a great idea. They were able to not only learn and talk about their issues but also socialize. And although they were behind an avatar they were able to talk to others through their PC. Anyway I started to wonder if there might be anything like this for Chronic illness. It occurred to me that there are no in person support groups for P.O.T.S. or even just chronic illness around me. And part of that problem is a lot of people have a hard time showing up. Even some of the facilitators have a hard time keeping to a schedule because they also have health issues. So I wondered if perhaps Skype groups or groups in games such as Second life were perhaps something that might be in the future. Or even now I don't know. For me I like the idea because I am better talking then typing. Plus I think I would feel less lonely and more relaxed if I could actually talk and see the person. Of course there is internet safety. You wouldn't want to just get online with a bunch of strangers and let them have a window into your life. But yet we pretty much do that on social media already. And I was thinking this kind of group might be done best by some kind of professional that would interview the people before hand to make sure they weren't just in the group to troll or who knows what. Anyway, I haven't slept all night , so I am just thinking without a filter today and I just thought. I wonder if it's possible..to make a virtual support group. So Anyone got any opinions? Think It's nuts? Think it would work? Think you would like it? Think you would hate it? I'd be interested in anything you have to say.
  6. I've been having nightmares lately and I had taken Prazosin, or Minipress, in the past for this. I am a little reluctant to try this again because of the fact that the prescribing doctor says it can cause low blood pressure. I thought I had head that it was like a beta blocker though. I remember taking a Beat blocker for the POTS a few years back. I was told at that time it would have the opposite affect on me. Meaning it could raise my blood pressure. So my question is, has anyone taken Prazonsin? Or do you know what kind of affect it has on people with POTS. Is it similar to a beat blocker?
  7. I was wondering if anyone knew whether Medicaid would pay for pain management, or how I would go about finding out. I'm not just interested in drugs. Any kind of hypnosis, biofeedback or things like that. Normally I know Medicaid won't pay for things that are not drugs. Bet i thought in the case of Pain Management there might be something I can get . I can't afford anything on my own. I'm in NJ if that helps.
  8. Hanice, That's a Beautiful painting. Carrie, do you have a link to your blog?
  9. thanks all for the replies. not feeling up to replying myself right now, but i wanted to let you all know i read your words and i thank you for the support.
  10. Hi. does anyone else have decreased resistance to colds and such? Seems like I go from one virus or infection to the next. I have a time where I feel pretty good for a while. Start thinking of maybe even trying to work, then bam I'm sick again...and no it's not psychological..lol I was actually looking for a job this past year. Not easy to find the hours I need though. I was volunteering which was nice. And even driving. But then I get sick and I feel so alone. It's been a few months now. I start to feel better and then something else happens. I have a hard time now not feeling negative. I know I felt better before and If I feel better I'll think differently but right now it's so hard to see that I'll get well again. On top of that my therapist of fifteen years just left me. that was hard enough to deal with but then I caught a cold and it just went south after that. How do you deal with it? I've tried to find a support group but they're always so specific. There's no POTS groups out there. Or even just chronic illness. I don't have any friends or family I can talk to. And when I'm sick with something catchy it's just easier for the family to stay away. My aunt was going to come over last week but I'm sick so she doesn't want that. How do you keep positive? I'm trying but it's so hard.
  11. Thank you so much everyone! I told them i wanted to talk with my doctor directly. She called back and wrote me a letter, no problem. So i feel so much better now. now hopefully ill get help with my air. the woman i talked to first obviously didn't know anything about pots, but of course assumed she knew enough to tell me what i needed. so frustrating when you have to deal with people like that! i was so upset because someone is willing to fix our central air and it would be crazy if that were stopped because of a stupid note that i actually deserve to have. Thanks everyone for your help and support! i really appreciate it.
  12. thank you so much hearts. that's just the kind of thing I need.
  13. first i apologise for my typing. my keyboard isn't working, so im typing this on the onscreen keyboard its not easy. anyway, i have a very hard time with the heat in the summer. i know thats not uncommon with pots. i currently have no central air conditioning system. it broke, we can't afford to have it fixed, and in our community they wont allow us to put window air conditioners in. i am very scared about the coming summer. we can get help getting it fixed however, but i need a doctors note stating that its medically necessary for my condition. i already called the doctors and had a nurse tell me shes looked it up and said its uncomfortable, she knows, but not medically necessary. so all of you that deal with getting sick from the heat know how frustrating it is to have someone tell you that. i know theres lots of places on the web that say ,heat is bad for pots but i'm not just looking for someones blog,etc. im looking for official proof to help make these people understand this is not just an issue of comfort. are there any studies done on this subject? any medical sites, anything from dr bell stating that heat intolerance is common with pots. I really need something i can print out from a trustworthy site. i know they have some info on that here in the 'what hurts' section. but id like more than one site. im so mad right now. once again, lack of knowledge on other peoples part has left me feeling misunderstood and guilty for wanting help. any help appreciated.
  14. I used to have a wheelchair. First my Mom pushed me in it because it was too hard for me to push it myself. Then after a while when I gained more strength, I would use it as a walker and sit down when I needed to. I am able to walk better now and just need a seat with me just in case I need a rest, so I use a walker with a seat. I don't know what kind of insurance you have but I have medicaid and they paid for both. So I didn't worry about the cost. Don't let anyone worry you about it keeping you deconditioned because the more you get out the more you'll want to get out and the more you'll want to do. I think some people see it as a bad thing.But to me it always helped me do more than I would have done without it. Same thing with the walker. I can go to the stores for hours instead of 1 store and then home. I feel now I would like to look into getting a cane with a seat, for those times when I just want to run in the store for one thing and get out. I always have to take the walker just in case I need the seat. I'd be great to just have a fold up seat on a cane for that.
  • Create New...