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Everything posted by friday7

  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.
  15. I've been juicing for a while. I got the juicer from a friend who didn't use it. So the price was right.LOL At first I started with just the juice but then started adding in the pulp since I didn't want to waste it plus there's a lot of fiber in there. I had a processor myself so now I justice and then take the pulp and put it in the processor to get it really pulverized. Then add it to the juice. I sometimes add tomato juice to make it thinner and easier to drink. I mostly make Kale Smoothies I guess you would call it. I use 3 cucumbers, a bunch of Kale about 4 stalks of celery 4 carrots, and then sometimes add apples if I want it sweeter, garlic if I want it saltier. I Haven't felt a huge difference in my health. But You've got to do more than drink a glass of juice a day .LOL I have noticed small differences though. For one,It has been getting me off carbs and processed foods. I was addicted to carbs and all because I have hypoglycemia and if you don't eat right you just keep craving carbs. I didn't even like to eat anything else. So I was really addicted. Now I feel myself liking real food more and more. I have been eating more vegetables with my meals. And enjoying them. And at night I'm not going crazy eating carbs. I can go for a sweet potato for a late night snack instead. Tonight I had a strawberry/yogurt smoothie. Very yummy. I still rely on Splenda for the moment but I'm lessing the amount little by little. Also it has been keeping me much more regular which is important cause it helps my GI problems. So little changes are adding up over time. I do feel that's the way to do it. Because if I went on a juice fast like some people do I'd probably make myself sick. If you're just juicing , meaning not adding the pulp here's a recipe I like. It tastes pretty good being that it is filled with Kale. LOL http://allrecipes.com/recipe/healthy-green-juice/ Oh and yeah making it and cleaning the machine is the hardest part. But I do it for about 4 days at a time. and keep it in a pitcher in my fridge. It makes it a little easier. I also keep a pad on the side of my kitchen sink. So If I'm not feeling up to cleaning everything right after juicing, I'll rinse everything and put it there . Then go back at a later time and clean it with soap. Someone here said something about ginger lowering your BP so i'd be careful with that.
  16. Thanks. I don't take Mestinon but perhaps I can try a low beta blocker. I'll ask my doc thanks.
  17. HI. I am so mad because I just saw the cardiologist yesterday, but today I noticed for the first time that I've been waking with a tachycardia. I saw have been because for the past few months I keep waking very upset. Sometimes I have nightmares, which I usually do not get. I know people say immediately it's anxiety. But I'm not sure about that and here's why. I do have an anxiety disorder. I have for most of my life. But I have not felt more pressure or anxiety in my everyday life. Except for the waking up upset. I see a therapist and am pretty aware of signs that I'm under extra stress. Nothing has really been different lately, except when I sleep. However some nights I don't even have upsetting dreams. today for instance I remember my dream as I woke up in the middle of one. It wasn't particularly upsetting. In fact I felt better when I was sleeping then when I woke up. When I woke I was then upset immediately and my noticed my heart pounding. It just doesn't make sense that I wasn't upset while I was sleeping yet I woke to a pounding heart. I'm starting to wonder if that woke me up. I just wonder if it has anything to do with POTS. I know I have a standing tachycardia..could somehow I be getting a resting Tachycardia while I'm sleeping? I also woke with gas in my chest. Right now I just want to burp to relive it. The only difference in my sleeping habits is I've been sleeping with less pillows. I used to sleep on pillow mountain, as I called it, but lately I have been sleeping with only two or three pillows. Compared to pillow mountain, That about 3 or 4 less than usual. Could the resting tachycardia have to do with that? My BP is okay. In fact it's been lower than normal since I ran out of salt tabs last month and had to cut them down a little to get through the month. Last time I had my pressure taken it was 111/80 which is a little low for me but I am now taking my normal salt amount. I'm going to have to make an appointment with the doc but I don't know when I am going to see her because like I said I just saw her and I usually only go every 4 months or so. I figured I'd ask about it here since I do know a lot of the weird symptoms I get are as a result of POTS. And like I said I never had trouble with nightmares or anything at night with all my years of anxiety. Actually I've had pretty nice dreams even when upset or depressed. So rest was always a good thing. It got me away from the every day problems and gave me pleasant experiences even when I was the most stressed. This sleeping thing is new..and it just doesn't make sense how I woke with a tachycardia when I remember what I was dreaming about prior to waking and it was not really upsetting. Anyone have a similar experience?
  18. thhaanks 4 replies .keyboard is brkeenn! will be backk when i get new one.
  19. Hi. I've been trying to get out more around people and since i can't work I thought I'd try to volunteer. I always liked helping people anyway. The problem is I feel like I am looking for a job. I've tried several online places that help you find volunteer jobs. First off I'm in MIddlesex NJ.. Which basically means the middle of the State. So I search within my zip code, I get all of these opportunities in NY! Some in Philly! And a lot that's in NJ but just way too far. It's really hard when you need something close and you have to wade through all of these opportunities that just aren't possible. I've tried this one site that has a filter so you ca say I want a job 10 miles away... But nothing shows up. I have a real hard time thinking there's nobody nearby that needs help. So I widen it to 20 miles..ANd I get a bunch but most of the are for Hospice or Cancer , stuff that will depress me if i do it.:I've tried before and I've gotten depressed. I finally find one that looks good I call up.."OH we don't have that program anymore"..Great! Thanks Vol. NJ! I found a few that look interesting but they want you to go through training, or sign up for certain days and hours. Like i can sign up to be a volunteer at a food kitchen but they are very strict with their scheduling if you sign up and don't show up 3 times you're out. It's a bit hard for me since i never know how i am going to feel from one day to the next and that just puts extra pressure on me..which makes it more likely I'll feel sick. Same thing with a local art school. They can use help but only certain days at certain times. And If I don't show up because i"m sick they'll be stuck with no receptionist..so I never sign up. I called the hospitals. But they are not taking volunteers. Not for a few months. This all is almost as frustrating as finding a support group! I call the self help clearinghouse every few months to see if there are any new groups because it's slim pickens for support groups around here. There are no general chronic illness groups...Why, I do not know. Not everyone fits into a neat little category I have tried chronic fatigue groups..but one was like a class. the women just stood in front and doled out advice..not much support. I tried another one but it closed. There's definatley no POTS groups! I was looking for a group therapy group for years , I finally found one. I have two session prior to joining the group just to make sure all was a good fit . I told him all about my illness. Then after I missed two groups he decided this wan'st the group for me. That hurt. I'm trying now to realize that this guy was the only one that had a problem with it..He asked the group how they felt and they were all very supportive..I just got unlucky with a fussy group leader. Anyway majorly frustrated. and what I usually do is give and and get depressed. But i don't want to do that. I know i have to keep going. Anybody got some success stories, of how they stuck it out and found a great place. I jsut need some encouragement to keep looking , to not get frustrated or feel rejected..to keep going. (sorry for the typos. I'm too dizzy to proofread much right now)
  20. I am currently facing this situation as well. I have one friend that I never see. I've been having a hard time because i need to have more support or fun outside of my home. I only live with my Mom so I do get lonely. Right now I'm currently trying the mettle groups in my area. You can go to meetup.com and find some in your area. I can't always attend these groups but what is good is that you don't have to be tied down to a commitment I've found a board games group I like. I tried another that I didn't like very much but there's more in my area I'd like to explore. I wish i had a little more money because that sometimes keeps me from going. People will often meet for dinner or movies and I can't always afford that. But I'm trying..Hopefully I'll find some more group that I like.
  21. Thank you Rachel, I totally understand why you would have stopped the way you used to do it. I hate those spammers. I hope you can figure out a way to do it in the future so that we can get a listing of all the people who put their names in for the meet others program in our area. Is there maybe a way you could give that info out to members who request it in a PM?I suppose you might get spammers that way but it requires a little more effort to do, so I thought it might be worth thinking about. I should have saved those email one at a time, but I didn't so now I can only contact new members. I was thinking it would be helpful to have addresses of all of the people in our area to maybe start a group or meetup. I know some members aren't able to do that but some are. Or it just would be nice to see if anyone is really close to where i live..That way if you strike up a friendship you might be ore able to meet up if you want. Anyway thanks for explaining . Again I totally understand. I hate those kind of people that use a group to push their own agenda.
  22. HI I signed up for the meet others program a while ago but then I never really did anything about it. How could I get a list of the people that are on the meet others list in my area? That's Middlesex NJ by the way.
  23. I'm been looking for reliable info on POTS to share with my new doctor and i know a lot of people get diagnosed at the Mayo Clinic and I also know that since it is well known that will hold more weight to have information from that site . The only problem I keep running into is when you look for info on POTS and the Mayo Clinic it always seems to come up about teenagers and children. If you didn't know any better you might assume it is a childhood disease. It's very frustrating because we know this is not so. Does anyone else feel their slant towards children makes it seem like a childhood disease..Is there anywhere that has info from the Mayo clinic that speaks about POTS in a general way?
  24. HI I found a site called disabilinet. Seems like a good idea if it's gets enough people and activity. it seem like kind of a facebook for disabled people... I know why not just join facebook? Well for me I like the idea of having other people who might be in similar situation to socialize with. For instance being that I can't work regular jobs, I am currently thinking of starting my own business, so It'd be good to talk to people and maybe find some direction in that...or other things. Anyway the address is- http://www.disabilinet.com/
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