friday7

OH you poor thing! How horrible! Glad you got it back.

3 weeks with no AC in this weather? How did you do it? It's been so hot here this summer! Wow I thought I had it bad..My central air is broken so we put one in the window and I have to use a fan to drag it through the rooms..But no air? I think I'd dig a hole under the house and hide in it.LOL It's good to hear this is pretty much normal for us. I just have a really hard time accepting I'm different than normal people..they just make it hard for me to realize i'm actually sick. I made it to my support group the other day and i started feeling lightheaded. I mentioned to the therapist that this is why I can't make it every week. She said. Oh don't worry about being sick . You can come here when you's e sick. Anna is sick all of the time and she pushes herself to come"..( Anna has a pain issue like fibromyalgia I think ) It's really hard when you keep coming up against people saying things like this. I tend to think It's all in my head and push myself right into getting sick. I gave her a sheet I copied off of this site last time. A few paragraphs about POTS and the symptoms..I'm hoping that might help. Anyway, I'm off to soak in a tub of cold water.

Yes I'm glad to hear that from someone else that feels this way, because I was thinking that it was my imagination. It seems even when I go out in the car with the air conditioner , it makes me sick going from cold to hot to cold..I never had that trouble before. I keep thinking I wish it would cool down and I could have a nice even temperature for a little while. Then I'd feel better. Yesterday I went to Plays in the Park..Big mistake. It wasn't bad out so I thought I could do it. I get so tried of not being able to do things. So I pushed it. The whole time I was there I felt hot. Not horrible hot but enough to make me unhappy. Then today I woke up and felt lousy. I went to the kitchen and felt like I was going to pass out. My legs felt like butter. I felt dizzy. So I just went and laid down. I'm thinking now it must have been the heat. My whole face feels hot. And I've been in the air all day. I guess I'm gonna have to severely limit my time outside until this heat wave breaks. It's good to know that others feel the same way, because of all of the people around me that don't have POTS and don't understand. I keep thinking what's wrong with me? I totally disregard the fact the fact that I have an illness and it gets worse in the heat.

I had never heard of a cooling vest.I found these thing like bandannas that you soak with ice cold water. I wear around my neck and that helps,but not enough. I couldn't afford a cooling vest right now though. I"ll just have to keep inside unless it's cool enough . I used to just go outside and soak myself with the hose when I was around the house..But this summer it just isn't enough.

I also was on Anti depressants years ago. I was on them for over ten years..Shortly after I started feeling sick, I got off of them. I too wondered whether they could have had anything to do with my illness. I wondered if maybe the antidepressants caused my illness. Now I am also wondering if I had POTS all along, and those ten years I had those particular antidepressants at those doses, were maybe keeping me from feeling the symptoms..IDK.

I think whether it makes it worse depends on the person. I had my ovaries removed 3 years ago. I actually wanted to do it because I felt like my period was actually making my POTS symptoms worse. Every month I would be so sick and weak I coulndt' get out of bed, my blood pressure would lower and I'd have bad hypoglycemia. I did a trial of Lupron for 6months ..that suppressed my hormones and mimicked what it would be like for me in Menopause. I felt much better and decided to go along with the surgery. The first 6 months I went without Hormones. I felt pretty good though, except the hot flashes were so bad I could not sleep at all, and I was experiencing really bad anxiety, and mood swings. So, I went on Hormones, the lowest dose, and that helped me out..I am now off them for about a year. Overall I have had ups and downs but in no way did it make my POTS worse..I have definitely improved as far as what was bothering me. I think for me it was the right thing..Again I think it depends on the person , whether it will help or hurt.

HI. I haven't been around for a while..I was actually feeling pretty good..well good for me. But this summer is killing me. I just feel sick all of the time like I have a bad sunburn. I don't actually have a burn but that's the way it feels, like I'm sick from sunburn. sometimes even indoors I feel sick...I guess just coming and going outside for a bit gets me sick and then the air isn't always cool enough, being that we're having a heatwave hear in Jersey. It's really been horrible. I was wondering if the heat exacerbates symptoms in others and what do you do about it?

HI everyone. I just want to thank you all for your messages. reading them helped me feel less alone. Sometimes you just need to hear that other people understand. It helps. I wish I could go through and answer each one of them but I'm feeling sick because of my stupid sinus again. Still I feel a little better than the other day. I did have a nice thanksgiving with my Mom and my brother and his family and even though I don't get to spend as much time as I'd like with them at least I do have them. To, pat57, yes my Dad has encelopathy, you're correct. We've known that for some time but It's just that the liver disease has progressed so much that the Latulose doesn' t really help anymore. He's just at the point where nothing would help but a new liver and he's too old and sick(he's 78) to be able to handle an operation..plus they would never give him a liver in his condition.But thank you for sharing the information I appreciate it. I think what is difficult is I feel as if i am grieving..not just about my father but about all of my losses. I felt that way a few years ago after I first loss my health then my brother. As I said I got through that stronger in a way, and I got this peace from it. I think that is what is going on now ..I just don't want to deal with it again. But I get from your messages something I think I know deep down inside, that it is just a moment in time and it will pass. It is just really hard to live it right now. Maybe this time will teach me something and I will be better for it somewhere down the road. I just hope I can learn to find some peace in the present moment. thank you all, Sue

Hmm that's interesting..mimicking allergies? Did he say if anything can be done to help you with this? I'd like to hear more about this if anyone can elaborate.. Sue

HI. I'm having a hard time today. I just keep seeing these holiday commercials and crying. I know the Holidays are hard for some people but I was hoping not to be one of them. It's just this year is even harder. I've been dealing with loss since my illness took over. I lost the ability to work, the ability to drive..not all of the time. but I still lost the freedom to just take off and drive whenever I feel like it. I live in Mid Jersey so I'd go to NY or Penn. or down the shore every few weeks. I haven't gone any of those places in years. Haven't even gone to the mall in years. I lost the ability to make plans..I never know how I am going to feel so its hard to make plans with other people. So I've e had these losses. Then 8 years ago just when I lost all of this I lost my brother. We were close. We'd go out and he'd drive which was great. And he'd even understand if i had to go home because i felt sick. He still lived at home since he wasn't married and didnt' want to love alone. So, that actually provided me with company. And someone to laugh with. I miss that a lot. My brothers I were always close and we'd go out together a lot. My other brother's wife never really wanted to come along but then my niece would go. And I had this little social group..and it was a fun one. We'd laugh all of the time. We'd make fun of everything, including ourselves. It was something I could depend on. Then I lost Allen my brother in Jamuary 2001. I had a hard time for a while because like i said he provided company, laughs, and a way out. He was my friend. At the same time I was dealing with the other losses in my life that I mentioned. This was a really hard time and even though I grieved for him a few years later I was grieving all of the losses in my life. I even went inpatient for therapy,and then outpatient in partial hospital. Eventually I found my way through it. And I even felt that I had learned something and gained strength in a weird way. I continued to feel better about things and felt like I could deal with things. then this past year..not a good one. I'v e been sick a lot..Meaning I've had a lot of infections. Bacterial and fungal. My Dad's been sick for a while. We were told he had Dementia but they never really explained what that meant. Other doctors disagreed with the diagnosis. On short he became horrible to live with and took a lot of of my Mom. I always had her to talk to when things got bad and more and more that wasn't possible. I of course Am an adult and need to learn to live without my Mommy.. but its' hard when you're sick yourself and have no one else. But I had my niece for company . we were always close and since she had moved only a block away from us I got to see her a few times a week. It's great when you're e not up to going out, to have someone in your life to talk and laugh with, that's so nearby. Plus she brought life to the house. Then this year, she got a boyfriend. She' 18 now. I expected to see her less and that's okay. But she just dissapeared. The thing is my father was getting worse all of the time so I know she didn't like being around that. I think it was a combination of things. I understand, but still it hurt. And it's still a huge loss. Now, my Dad has gotten worse. They finally realized his liver is failing. That was what ws causing the eposodes of Dementia. ( he has liver cyrrosis caused by diabetic drugs he was on) So now he is home, in a hosptal bed, we have Hospice coming daily to help take care of him. He cannot get up or talk he just sits and stares and sleeeps . I feel i've been losing him for a whie since he has not been like himself for a few years. But he was stil there yknow? Now he's gone for hte most part. He's gone my brother Allen is gone. I feel like my niece is gone. And my Mother is so wrapped up in taking care of my Dad and she's getting older herself that I feel I'v e lost a lot of her as well. I just feel like my whole family is gone. And i have no one else. Aa an adult I never had close friends except for my brothers and niece. I did have one friend that stayed with me afer I got sick. And he really only sees me if i can go to him. He has no car. So if I dont' feel good I dont' see him Plus he's not the most fun. And he's not much support....He's just someone to pass the time with. I just see these commerials and I can't help but remember how it was jut a few years ago. I remember a Christamas with a house full of family laughing and me feeling like a part of something. I feel like it's all gone now., I feel so much loss. I feel it's loss i can't replace. I can't get out and find new people to fill my life. I can't even get out! And even if i can it's so hard to make friends nevermind when you'r e sick all of the time. Plus I always had a problem with shyness and found it hard to get close to people. I Just don't see a good future. it scares me. I feel so much is lost. I get scared when I see my dad I get scared that one day I'll be like that only I'd be alone in a place with strangers taking care of me..poorly. I have a therapist. and she tells me not to think about the future to concentrate on now. But I can't help it it' s in the back of my head. Plus now is not that great either. I feel all of this loss and i don't know how to handle it. I miss my family, I miss my life, I miss my freedom, I miss feeling that I can have a future with good things in it..I dont' see how now. And these stupid Christmas commercials keep reminding me pf all I used to have . It's so hard because I only talk to my therapist once a week for 45 minutes, I need so much more. I'm sorry to sound whiny or whatever I'm just trying to get all of this out. Hope you understand, Sue

I was just wondering how many of you have sinus issues? I know a lot of people with POTS have dizziness and it's probably related to blood pressure. Although I do get lightheaded when my BP is too low . My BP is pretty good now but I still feel lightheaded and dizzy most of the time, or rather just off balance. The thing is I have had one ear infection after another for the past two years. And when it' s not an infection I just get fluid in my ears. I am supposed to have tubes put in..yet again. But it only partly solves the problem. I think maybe it has to do with constant inflammation of the Eustachian tubes. I've tried all kinds of meds for sinus and allergies but nothing seems to help. I'm just wondering if other people hear have chronic sinus issues or inner ear problems and if they are related to the POTS at all. Sue

I think that's an interesting point. We all learn things differently. Me I'm a visual person. I always did well with flash cards. And I always do better by actually trying something rather than just reading about it or watching someone else do it. I think I"v e got to keep this in mind when trying to figure out how to learn new things..What works best for me. For example I've been trying to do a tutorial for paint shop pro, online. I really should print it out. For some reason I just like to have it in front of me. Then I can also write notes or questions I have on the paper as I'm doing it. Writing things down also gets things into my head. thanks for jump starting my mind. Susan

thanks for the advice. It really helps. And it helps to know I'm not alone. Susan

Well I'v e never really tried compression garments. I had this doctor once that didn't feel it was a good idea? I dont' remember why but i guess it kind of scared me out of using them. I guess this is the time of year that it would be a good time to try. When you say garments what other than stockings do you mean? Sue

I've had problems with brain fog for a while. Sometimes it's just misplacing things..And I dont' mean I forgot where my keys are. I mean someone will hand me something and I will have no recollection of what I did with it. Or of them even giving it to me. I have have my Mom come to the doctors with me as my back up. So I dont' forget what she says to me, and to give my Mom all of my prescriptions or any notes from doctors because I know if they give it to me it'll be lost in a minute. I'm not bad all of the time but often It's little things like switching words with other words or sometimes I"ll switch the first letter of one word with the first letter of another. Like If I were to say Happy Birthday, I might say Bappy Hirthday. It's hard because people don't realize what a problem it is. It sometimes make me uncomfortable when I talk to people. I also have a hard time absorbing things when I read. I sometimes have to reread things. I guess it's really frustrating for me because I was always pretty sharp. Learning came easy to me and I always did well in school with little or no effort..Not that I'm bragging but It's just that I 'm used to being able to read something and pick it up right away. And I'm used to being pretty articulate and fast with my words. Now sometimes I say something and I'm not sure if I said the right thing. Or I get lost in the middle of a sentence. I get embarrassed and dont' know what to do. then it usually makes me tense which then I'm sure make things worse. Then I find myself forgetting every other sentence. It kind of effects my self esteem. Right away I feel stupid. I know I'm not but i just get frustrated with myself. It scares me. I dont' want to get worse. And I know that this usually happens with age but this is different..I'm not that old.LOL I'm only 43. this is not normal 43 year old stuff....plus I worry about what will happen as I get older and the age thing makes it worse. I always liked learning new things and so I kept my mind busy. I know that's good. But lately when I don't feel good I dont' feel like learning new things or complicated things. It jsut stresses me out. I do play a lot of shockwave games. That's sounds funny but I do think it does help work your mind muscles. I particularly like the strategy games. Anyway, I was just wondering how others deal with brain fog. Have you found any supplements that help? What do you do to work your mind muscles? I was thinking of trying to start my own exercises. I mean I know if you have a neurological problem that sometimes have therapy that helps you recover. Or I even remember in school that they would have Speach and reading class for those kids that were a little behind. I think of that and think maybe there's things I can do to exercise my mind. I don't know if there are any websites specifically for this purpose. I'd appreciate it if you know of any to let me know. I was thinking of getting a large type book out of the library and practice reading out load. Like we used to in school. I'm trying to think of other things I could do . If you have any suggestions or anything that helps you , please let me know. Susan

I'm so happy to hear of your good fortune! It should help others to here about it. I have improved since first being diagnosed. I'm still having problems but your story gives me hope. Enjoy your life and school:) Babu

No. I actually only have one friend that I had before I got sick. And since he hasn't had a car for the past year I don't see him. I used to talk on the phone with him but it always wound up being a discussion about how we could get together or trying to make plans with me. He just didn't get that I couldn't do it, and It would just be nice just to talk on the phone. So I haven't called him for a while . I got fed up with it. there was really no point. I just found out I have an ear infection ...again, so at least that explains why i felt extra tired lately. Hopefully when i get rid of it, I'll feel a little more up to trying a volunteer thing. thanks Susan

Thank you all for your thoughts. I really appreciate the support. Susan

I've been here before but that was a while ago. SO I thought i"d introduce myself again.HI my name is Susan. I'm 43 and was diagnosed with POTS about five years ago. I"ve been unable to work and most of the time i can't drive. I'm alone a lot because of this. I'm living with my elderly parents, and my father is severally sick, and also has Dementia. My mom takes care of him and it is taking a tole on her. It's pretty depressing living here, but I have no choice. I used to have my brother and niece for company but they haven't been coming over as much these days. Its very hurtful. I know they have their own lives and are busy but can't help but feel rejected. especially since I have no one else and all i want really is someone to watch tv with sometimes. But it seems my brother doens't understand. We used to be good friends but these days it seems I can't do anything right. I have gotten better since i was originally diagnosed. I went from being in a wheelchair to walking and using a walker in the stores. But I just have a hard time dealing with being unable to get out into the world. I feel guilty about not doing things and blame myself a lot. I have been reading a lot about mindfullness and that has helped. Trying to live in the moment. But it is hard. WEll that's about it I guess i'm not feeling up to writing any more since i wrote this whole long post before this,and then accidentally lost it somehow:(. I"m also sorry about any typos. But I'm having a hard time reading today and so I can't go back in a proofread right now. Susan