friday7

Thanks Katybug and Angelica. I was worried that it was a requirement to faint for a positive test result and so I would fail. It's nice to hear form people that have had it done that it is not required. And you're right if it does give the info to help me it will have been worth it..I'm still freaked out about it .LOL It's just the fear that I'll have to go through that feeling that the life is leaving my body. But actually I don't even know if it'll get that bad .If it does I'll have to keep telling myself how this has happened before and it's always been okay, and I know that my heart is okay. I just got tested. So that's good anyway. I just have to remember to keep this self talk up..cause you know it's easier to say this now.LOL I also have an appointment with the doctor this coming week so I'm going to talk to her about it more. Thanks, Chaos. Wow six TTT's. Whew! I feel bad complaining about one. LOL Yeah Most of the fear is what if I'm very symptomatic and the other fear is what if I'm not symptomatic enough.But if it might help me .I guess I'll have to do it. I do want to talk to her first though.I think that might help me feel better about tit. Thanks everyone for posting your experiences.

I just started with a new doctor a cardiologist who actually knows what POTS is. I've been to so many doctors that just thought it Orthostatic hypotension. Anyway I'm glad I found this person. But now she wants me to take a tilt table test. Not really to diagnose but to get an idea of what kind of POTS and symptoms I have so she cant test it better. Okay But i do have a problem with that. One thing is I'm afraid.LOL the other is i don't faint easy. In fact I've never passed out except one time I did going into the ER..Wasn't really because of the POTS I was very low on electrolytes and eventually by the time i got to the hospital I halfway passed out. I was still a bit conscious. It wasn't a sudden thing. So all of my experiences with fainting have been like , I'll feel sick and dizzy and like all of the life is draining out of my body. Sometimes my vision will get dim..that's usually a signal that I need to lie down fast. What happens is I usually lie down and I feel it pass over. I can feel a pressure go through my head and even a low rumbling. So that's what I experience instead of fainting. I'm glad I'm not an easy fainter. But being like this isn't much better except i don' t have to worry about hitting my head. The whole experience is horrible when it happens really bad. It's scary. I don't like the idea of going for a test that is designed to make me faint. And the thought that I might not faint but just experience these feelings of the life draining out of my slowly. And, on the other hand I'm afraid of fainting.It's never really happened to me before so I don't really know what that would be like. Has anyone ever had a tilt table test without fainting? I heard that a positive test is when you faint.Or that they do the test until you faint .So the purpose is to make you faint... Also I have heard of false positive and negative results. I'm thinking I don't want to go through all of that just to have someone say you're fine. Since i don't faint I'm afraid that will happen. Then Instead of getting a new doctor helping me I get someone taking away the diagnosis of POTS? After all these years I don't need that. I mean if it were true, great, but i know it's not. I just don't need someone else putting it into my mind that I'm not really sick. It's just nerves or some junk like that. I don't need to go through that it must all be in your head thing. Iv'e been through too much crap to start going through that again. Anyway I'm really upset about the whole thing. I want to go and take it because mayeb it will help her treat me, on the other hand ..well what I said above. I felt bad enough about the whole thing and then I read from several sources that it's got this known false positive /negative thing. What reasons did your doctors give for giving you the TTT. Was it to diagnose? Do you feel it helped him or her treat you better? Has anyone ever gotten a false negative test? I'm just really confused about what to do.

I don't know if I'd count out hormones. I have also been through Menopause. I had my ovaries removed five years ago I got baad hot flashes at first , got on Hrt due to not being able to sleep because of the hot flashes and mood swings It got better after that for almost two years then it started coming back .Mostly the moods. So they took me off HRT and that helped that. Haven't had hot flashes in years. All of a sudden a few weeks ago I started getting hot flashes again. I have also been getting mood swings and breast pain (something that was always a signal that my period was coming). So I'm thinking maybe my hormones are unbalanced . It's been like five years since i went through Menopause. But I am definately going the gyno to find out what they think.

HI. I have had times when I got much more fatigued than normal. It usually turned out it was a new diagnosis like Hypothyroidism or Iron Anemia or even Low vitamin D. I always get super tired when my Vit D is low.

Depends are you Diabetic or Hypoglycemic? I have Hypoglycemia and I used to get bad drops when I didn't know how to eat right. I still get that feeling from timeto time. I'm pretty good at not only eating right but noticing the signs before it gets too low. But still sometimes I feel like it's low. I get that sudden extreme hunger and I'm nervous for no reason. Most of the tiem this happens it's about 70 something on the meter. Which isn't technically Hypo. But I had read that sometimes you feel symptoms based on how fast your sugar is dropping. So I chalk it up to that when I feell that way. i just usually get some fruit and nuts to make sure it stays up. This is jsut me though.

Yes.I was more or less bedridden when I was first diagnosed.. I've had ups and downs since then but much better off now. I can get out. I can't work ..yet. But sometimes I can drive and go to stores and volunteer to take care of the cats once a week at Petsmart. I went to a few concerts in the park this year. I even got up and dancded for one song(my versionof dancing.I can't move my feet , just my body or I'll falll over.LOL) I think at this point i have other problems such as an inner ear disorder that also keeps me from doing things. If iI didn't have that I'm sure i'd be much better. I still can't do all that I used to do but so much bettter than 7 years ago. Mostly what helped me is the salt loading, and getting my BP up. And also I got my overies removed. I had a major problem with my POTS symptoms when I had my menstural cycle.. So in my case it's helped a lot.

Thanks I'm glad to hear that you do well there! I will PM you.I'd love to talk about it.

I was just wondering if anyone had a job that they could do at least partially from home? Has anyone started working from home after you became disabled? Did you get any help? I am at the poiint where I feel it would make sense to do something from home that I can make money at..I know not that easy. I'm not talking about medical billing or any of those things.I know there's a lot of scams out there. Not really looking at that stuff. I have a background in art and crafts. I feel I can make something out of it but need help. I used to sell at art shows and craft fairs but that's no longer an option. Used to teach art at night school...No longer an option. I know there's Ebay and Etsy. I've tried selling art on Ebay..not an easy task. I tried t shirts and stuff on Cafepress, Again not an easy job.A lot of work for very little profit..and sometimes no profit. If anyone out there has a successful Etsy or Cafe press site I'd love to talk to you. Hope that didn't sound sarcastic, I really mean it. I tried talking to vocational rehab about it hoping they would help me, But they just kept blowing me off .She kept repeating they help with "competitive employment". So no help there. I'm not even looking to "making a living".I would be happy to make a few bucks each month. I have enough skills to do a lot of things. I'm just not sure what direction to go. I've been thinking lately about selling Clip art and 3d models, stuff like that. Creating the stuff people need to create their own art. I know a lot of people create stuff and put it on a disc and sell say 50 designs in a package. But I don't have business savvy. I have a real hard time selling myself. At least I'm aware of this, but I need to learn how to sell, how to create a product and put myself behind it. How to price, how to look professional etc etc. I just need some help or some place to learn. Anybody know of any resources for disabled or people with a chronic illness and starting a home based business?

I think it depends on the person so it's hard to predict. In my case I am much better. I didn't have my uterus removed just the ovaries. The things is with me the reason I had it done is because the fact that I was having more and more issues with my period being irregular and PMDD. And when I would have my period It would increase my POTS symptoms to the point where I could not get out of bed. Every period it was getting worse and worse.I had suspected hormonal issues causing some of my problems for a while and it was becomming intolerable for me. After trying several things over the course of a few years, The doctor suggested a hysterectomy, but he wanted to take out the uterus and leave the ovaries. To me it didn't make since because although it would stop the bleeding every month I'd still have the ovaries so I'd still have the hormones causing problems. So I started looking up alternatives to hysterectomy.I read about a drug called Lupron and from what I read on it it sounded like it was right for my problem. So the doctor thought I had a good point ( this is the only doctor that ever really worked with me like this . I wish they all were like him) He also thought since the Lupron mimics Menopause since it lowers your hormone levels, it would be a good test to see how I'd do with Menopause. I would have just stayed on Lupron but you can only take it for like 6 month at a time and then you have to give it a rest for 6 months. So anyway, After I took the Lupron I felt great. My POTS symptoms were greatly reduced at that time of the month. I was also much calmer since the irrgualr periods would give me such PMDD. So after a 6 month test we decided to remove the ovaries and keep the uterus. I of course went through Menopause. I had hot flashes and some mood swings. But not bad compared to before the operation. And the POTS improved. For a while I had more anxiety and bad hot flashes were I couldn't even stay asleep. So I went on HRT for a while. A small dose. That settled things down .I got off of them about two years later. All in all it was good for me. I had some ups and downs but nothing compared to what I went though prior to the operation. So, that's my story. I would really do some research if i were you. Go to surgical menopause sites and talk to others. read about it on medical sites. Find out exactly what you're symptoms are. I really had to get a lot of information before I would consider the surgery. I had tried everything else I could first .But nothing helped until the Lupron. I'm not recommending it as the cure. For some people it helps and some people it makes things worse. It all depends on your situation. In your case you are considering the operation because of Cancer, which is very different from my case. For me it just happened to work but everyone is so different when it comes to hormones, so research.

Well my vi.t D was low too. And I think that's common with POTS and CFS. It didn't' "cure" me but I know I feel a lot less energy when my vit. D level is low. So it does help me a lot to take supplements.

I understand you're point lemonsintolemonade. You found something that worked for you and you're wanting to share that. I think you have to understand that a lot of us here have been through a lot and are very sensitive to people saying you have to push yourself and things like that. It's just a lot of us have had people very callously say things like us to us. It makes you feel like you're somehow causing this or like you could get well if you'd just push yourself. And when people say this, well it just produces feelings of guilt and frustration. I do get it though. I don't' think it's you're intention was to hurt anyone. I just know this is a sensitive issue for me.

Haven't seen the cooling towels but I use the bandannas. They help . When i go in my own backyard I just soak myself under the hose. I dont' care if i'm sopping wet it helps. It also helps for me to use a mister when I go out. I take a cooler with ice packs and bandannas and the mister to keep wetting myself. It doesn't help if it's ridiculously hot like over a hunderdd. I'm better off staying in then . MY car has no air conditioner so I would get so sick if i go out in that heat even with the cooling items.

I think it's pretty normal for us to be traumatized by these symptoms. Not only are they horrible and scary but people ignore them or tell you it's in your mind. It's hard enough experiencing scary symptoms again never mind feeling like no one will understand. My mom just doesn't get why I get so panicky when I get bad symptoms..or rather even sympotoms familiar to times that I have had a horrible experiences. And she's the most understanding person I have around me. I don't know if it's PTS, but when I get the symptoms of a certain kind i know I do get stressed out due to the past experiences.

Thanks everyone for your input.:)Lemonsin2lemonade, I'm curious, In what ways did it make your POTS worse? I 've been feeling more weak and dizzy lately and much less energy. If I do too much I get sick. This is after a very long time of feeling pretty good. So it's kind of a drastic change which I usually don't have unless there's something causing it.

HI dizzy. thanks for answering. The test did have only one band that was abnormal. It was "IgM p23 Ab". It says "present" and abnormal. I'd really like to talk to someone because ,even if it's not Lyme,then what is causing that abnormal result? I have had increased symptoms lately..the ones you described so I'm trying to find out what's causing it. Oh my BP has also dropped drastically lately..That hasn't happened in years since i started to take salt tablets. So It's not "normal" for me. Thanks for the link . I'll try and look at it when I'm not too dizzy.

I'm just curious if anyone has been diagnosed with Lyme disease? I had a test done and I have one abnormal result. I have no idea of what this means. ( I can't talk to my doctor because she left without disscussing the results with me and I have to wait until I get a new doctor to find out what it means. I'm not even sure if she saw the test results before she left.) I'm just wondering if anyone is familiar with Lyme testing.

Oh my Gosh I know just what you mean. The stupidity of such smart people amazes me. I had three abnormal test results . My doctor ordered the tests. I got the results in the mail from Labcorp. So I wait to hear from her. Nothing. I call the office and ask to speak to her about it...nothing. I call again..nothing. Next time I call, she's left the office..for good. I have to see a new doc and wait until the 1st to talk about my results? I am so sick of doctors. I mean I know there are some good ones out there but there are sooooo many jerks. After years of it it makes you so, well, sick.

"This is what chronic illness looks like" I like that one, because it's the truth. They think you can't look like a regular person and have terrible symptoms to live with every day. We do our best to do what we can and look the best we can and our reward is insensitive comments. I had a doctor that used to say to me. Well, you can't be perfect. I'm like who said I wanted to be , I just want a life again! I swear I'm not sure what that means when they say "you look good". Are they trying to say I look good so I should feel that way? Or I must be exaggerating? Plus I don't' look good a lot of the time. I think wow, they'd think I was gorgeous if they saw me when I felt good.LOL And really, why would I care about how I look if I feel like crap?

I am on Prozac and was wondering in anyone has had issue with it lowering or raising blood pressure? I have been trying to figure out a cause for my recent raise in blood pressure (for six months) then very recent lowering of my blood pressure. I have stopped two drugs already that seemed to be the cause but things are still not normal..well normal for me. I have also greatly reduced Seroquel from 400 mg to 100. I am still having problems keeping my pressure up. I normally took four salt tablets a day, to keep my BP up. Then six months ago I had to stop taking it all together because my pressure was already up without it. For the first time in five years I was not on salt tablets. I figured this was either due to Seroquel or Prozac since I had started these both at that time. Now all of a sudden this past month, my pressure has dropped. I have to take from 8 to 12 salt tablets and still have low BP at times. Something has suddenly changed but I have found no help form the doc. I did recently take some blood tests and had 100 fasting blood Glucose... which isn't bad but it is above normal. And I had a high Ferritan level. It wasn't that high...250..but again it's high. Problem is my doctor, after taking these tests, left. She was an intern and I knew she was leaving but I called to ask about my tests results. She never answered and the next time I called I was told she left. Now I have to wait until August 1st to see this new doctor who knows nothing about me..More than frustrating! So I started considering Prozac. I noticed that it said some people take Prozac for Neurally mediated hypotension which is basically POTS. Well for me it is. I just thought maybe it has the opposite effect on me? I'm just lost. So again, anyone take Prozac and then have trouble with their BP or symptoms?

Just wondering . If you feel relief from being in the pool I'm wondering if it can effect your wellness overall if you swim weekly. Like is it that we feel better just while we're in the pool or does it provide some benefit afterwards also. Just wondering if gong to a YMCA pool weekly would help symptoms overall.

HI I had been taking salt tablets for a few years and it has helped me a lot. My blood pressure is normally around 120 over 80 and that's where I feel good. I would take four to five tablets a day. But since January I have been taking Seroquel to sleep. I have taken this med before without any problems but this time i went from 100 mg per night to 300 to 400 mg a night and slept much better. I noticed about a month after starting that and Prozac at 40mg my blood pressure was up without the need for salt tablets. I figured it must be the seroquel that somehow increased my BP. So I stopped the salt tablets and it still stayed around 120 over 80. Since i felt fine and didn't have to take the salt I was fine with this. But about two months ago I started feeling extra tired and then a little lightheaded. I went to the doctors office and my BP was around 99 over 60. For me that's usually not good. So I wondered why the drop. I kept an eye on it with my home BP monitor and it kept staying low, getting really low when I lay down for a while. I also checked in the drug store on their BP monitor with the same results. I have started taking my salt tabs again but I now take about eight a day and my BP goes up and down. It wont' stay up steadily. So I am now questioning my Meds. First off there's the Seroquel. I noticed that the dizziness and lightheadedness increased about half and hour after i took my seroquel. So I started taking my bp and it would drop at that time. But I'm not sure if it was the time of day or the meds. I'm confused why it would raise it for 6 months and then go the other way. I have lessened the dosage. From 3 to 4 hundred a night, to two hundred, then one hundred and then I only took 50 mg last night. but i still am having trouble with my BP being low. I don't know if it's still in my system perhaps? Also i started a nasal spray. Flonase, two months ago. So I was considering that maybe that could have caused a drop in my BP? I also have started using Clobetasol Propionate fro the past month...which I just looked up and that is also a synthetic corticosteriod, same as Flonase. Since I first noticed the fatigue and then the lowered BP this past month or so I was wondering if that could be the cause of all of this. I know the heat is making me feel rotten...don't know if it's the cause though. I think it's just not helping. How do you get a regular GP to look at this . Every time I go and it's low they tell me that's good! I told them i have POTS and all but most of them just ignore that. ANy ideas?

HI. I've been taking Seroquel for sleeping for a while but recently my doctor increased it to 300 to 350 for sleep. Since I was having a lot of trouble sleeping. I had tried trazadone before that and woke with night terrors. So he also prescribed Minipress which is a blood pressure med. I was a little concerned about that but figured I could alter my salt tabs..maybe add a tab to keep my pressure from lowering. I also figured this would be temporary, since I am not taking the ttrazadone anymore. I just haven't seen him yet to see about discontinuing the minipress. I was also recently put on Prozac. Anyway, I just wanted to ask if anyone had trouble with any of these meds and raised blood pressure. See the thing is normally I take four salt tabs and load my food with salt to keep my pressure around 120/80.That's where I feel best. But since taking this combo, My pressure has actually raised? I've very confused since I thought most of these drugs could lower the pressure. I was wondering if the minipress was similar to a beta blocker , where POTS patients are known to have the opposite effect and have their pressure raised rather than lowered. I do have a doctors appointment later this week. But i'm just curious if anyone has been on any of these meds and had your pressure raised.

thanks Katybug, for telling us what you doctor said. it's great that you have at least one doctor that understands. i was wondering if there is anywhere on the web in any studies or anything written by doctors that mentions low body temp and POTS...or at least low body temps and CFS. I feel like if at least there's someplace official in some way that states that it is common for patients with POTS or CFS to have a low temp..at least that would be something to show the doc. I looked at potsplace to see if it listed it under symptoms and it did not.

Katybug, I'd be interested in what your docs have to say. So far I havne't found one that will really listen as far as the temp goes. I've had a temp of 98 or higher every night this week and I feel terrible. I had an ear infection so it makes sense but I've been taking these ear drops for two weeks and I Feel worse now and I'm thinking maybe i should have gotten oral antibiotics instead. so I 'm goign to see the ENT next week. I'm hoping this will clear up by then otherwise I have to explain the low temp thing to yet another doc and I just get so nervous cause I'm afraid of the brush off, and I know I'm sick..I turn red every night. And I dread having to explain the low temp thing to yet another doctor.

I also have trouble shopping . Sometimes it fatigue , or dizziness or the fact that I can't walk too long without sitting. or I can't stand in lines. I got a disabled card from motor vehicle. which isn't hard to get if your sick. So that helps. I also used to use the motorized carts they have in the grocery stores. But when my Mom got a rollator, or walker with a seat , she found she didn't like it as much as her cane and gave it to me. That's been great. I can walk and lean on that a little, and whenever i feel the need to sit there's always a seat. It's a bit hard with food shopping being that there's not much room for food storage. but for small shopping trips it's fine. It has a little basket I can put on front. And I also take a small store basket with me and put it on the seat. I fill up the outer basket first and when that's full I use the other basket which I keep on the seat. and if i need to sit i jsut take that put it on the floor and my seat is free again. It is also good for shopping in stores like Walmart. I often sit down when there's a long aisle that I want to look at and push myself along with my feet. so instead of the extra walking i have a little sit while I am gliding along and looking at things. If it's a real long walk to the back of the store, I put my knee up on the seat and push with my other leg, giving them a chance to rest off and on. It really increases the amount of time i am able t o shop and gives me piece of mind knowing there's always a seat around. And for standing in line it's fantastic. I just sit down and have a rest, where before I'd wind up leaving my stuff because I could not stand in a line that wasn't moving. I just got a new one through medicaid, but they are not too expensive. You can find them around 45 bucks if you're lucky. If money is an issue you may be able to find a used one online.