friday

HI. I have been dealing with POTS through my CFS doc who I honestly haven't seen that much. He charges 200. bucks a pop and I just dont' have the money to see him much. anyway he's the only doc that i know that knows about POTS but he's kind of treating me for so many things we're not really focusing on the pOTS. What I would really like is a Nuerologist that knew about POTS. Or just a good doctor that had good knowledge of POTS. I have seen the links to doctors but it only lists NY and that's kind of far for me. And they definately wouldnt' take my insurance then. I was hoping someone here might have a good doc in NJ. i know it's a long shot but I thought I'd ask. I get tired of having this thing that no one will treat me for. everyone acts like it's just a matter of geting dizzy when I get up. I know there's no cure but I would really like a doctor that would actually see me specificaly for the POTS. Also if anyone knows of a chronic illness group in NJ. I know there wouldn't be a POTS group. I would gladly start one if i had the ability . Unfortunately if people are too sick to run one nothing ever gets started. Any help appreciated. Sue

I know, by asking, that a lot of you guys get the blood pooling and red or purple feet. And I uderstand that some of you , like me , also get blueish tints sometimes, and cold feet. Now I've got a new one. Does anyone get a darkish color to thier feet. It seems lately I get this dark color along with purple and then a white tinge on top. Very weird. It actually looks like my feet are getting dirty. I start out with nice clean light feet and then they look like they are dirty. I have PCOS and I know that insulin resistance causes a dirty look to your skin, but I think it generally stays, once it's there..I think. This comes when my feet are still on the floor for a minute. And goes back to normal once I pick them up. I'm just trying to figure out what's going on here because I also can't walk much without this squeezing pain in my legs. Te more I walk the worse it gets. Until I get faint, and nauseous. I don't know if it's the POTS or maybe another kind of circulation problem. My doc was gonna send me to a doctor for circulation( forgot the name when he first saw the odd color of my legs. Then the next time I saw him, they just turned red, so he said, Oh It's okay, you're getting blood to your feet, so you don't need a circulation test. I told him sometimes they get weird colors but he just brushed it aside. Now I'm mad I didn't force the issue. They just have this way of confusing you sometimes. Any feedback appreciated. Friday

Linda. Don't split the pills with a pill cutter if you take time releasecapsules. Somehow it just will just increase the dose of the medication. I learned this the hard way. An overdose can be quite horrible. Actually you may be experiencing a slight overdose now. The symptoms that you describe are similar to the way I felt when I was splitting my pills and getting too much. If you feel sick because of this dose you don't have to drop it all together,Maybe it was just too much at once. You might want to try taking the 180 timespan and then a 60, later on and see how that goes. Then you can go up 60 at a time. I had to get off of the time release because of digestion problems, so now I take 60 three times a day. You can also get liquid if you prefer. Now I'm thinking of bumping it up 60 more. After that overdose I want to move slow. My doctor had told me that some people are very sensitive with this med, so it's best to build up slowly.By the way. If by any chance you do feel horribly sick and you think it's an overdose,( look up side effects on the net, and it'll tell you) The medicine will be out of your system in 12 hours, so dont get worried. Sue

Interesting. I also have to eat about every two hours. It was really bad the first few months. It's be 15 minutes and I'd be starving. I usually eat very little, because I know, no matter what i eat or how much, In a little while I'll be hungry again. Plus I don't really even have an appetite for meals anymore. Thanks for your reply. Sue

Whoa, with those numbers?! Well that's why I don't like doctors that just go by the numbers, they don't always coincide with the way you feel at the moment.It's kind of what happened during my worst hypo attack. I was helping a friend move, and only had breakfast, worked four hours solid, with nothing in my stomach but orange soda..not sugar free. (duh!) I was fine the whole time, until we were aleady in the diner eating and then, bam, it hit me like a ton of bricks. Logically it shouldn't have happened because I was already eating and my BSL was 68 by the time I checked it, but that attack was just due and the food wasn't geting there in time. Anyway, this was a long time before I learned how to treat hypo so you can bet I'm not being so stupid now. It's like I was asking for it.;)Thanks for the reply. Sue

I had just read someting about POTS and Hypoglycemia. I was wondering if anyone here had Hypoglycemia or blood sugar problems of any kind? I have been Hypoglycemic for about three years now. I've gone on the diet..no sugar, no white flour, no white rice.etc. Although I've gotten rid of the sudden drops that make you feel like you're dying, I still have symptoms. I've noticed all of my real problems had started after that. I had CFS and Fibro but it was manageable and came and went. But the past two and a half years have been ****. Now i found out i have PCOS, which has a strong connection to insulin resistance, or Hyperinsulima. Then I just read something on a POTS site saying that a lot of people with POTS are Hypoglycemic. I'm wondering if Hyperinsulima could be what's made my health worse. I've now started to get Nueropathy symptoms. Well I've had some for a while, vision problems, numb toes, zips and zaps, but now I've got burning sensations on my skin. Not like a fever but, like a sunburn, and I haven't been out in days.. Kinda scares me cause they say it's hereditary, and my dad is a type two Dieabetic and has Nueropathy. Before telling him what I felt like, I asked him what his Nueropathy felt like..and he said "like a sunburn". I was always given the impression that Hypoglycemia is okay to have as long as you control it with diet. Now i'm reading that signs of Neuropathy can show up before diabetes is even diagnosed. Great. So they dont treat Hypoglycemia but I have a very good chance of having my nerves damaged if it is turning into insulin resistance, because no one will treat me until I get to the magic number..even then they'll probably give me a problem... Anyway, I'm just frustrated, and was wondering if it's true that people with POTS sometimes have Hypoglycemia. Sue

Well, I'm kinda sick rigth now so i can't read all of these replies, So, forgive me if my suggestions have already been mentioned. First you mentioned you weren't an artist. Well, I am, and I am telling you, you don't have to be "good"compared to other artists to do artwork. It is just a way of expressing your creativity, and it's personal. It's like music. Everyone enjoys singing even if they are not great. What is fun about art is the doing. It's fun if you're good, but there are some very primitive artists out there that are very well respected. Also the impressionist artist Cyzanne, as he got older, had crippleing arthritis, and couldn't paint anymore. Instead he would make art by cutting out colored pieces of paper and forming designs to create his art. He needed to create. Even if he couldn't be the same artist he once was. Anyway after that speach. I was going to mention, If you want to color but not kids stuff, they have all kinds of art coloring books in the book stores. Like Da Vinci, Michelangelo etc. They also have all kinds of coloring books that have grown up images. You can try these sites: http://store.yahoo.com/doverpublications/048643334x.html They have loads of other interesting colring books at that same place at: http://store.yahoo.com/doverpublications/b...ring-books.html http://www.fontcraft.com/dcb/ http://www.hearthsong.com/hearthsong/product.do? section_id=0&bc=1005&pgc=373&country=0&occ=1005 the thought of coloring these pictures in makes me sick, but I can't take patterns. http://www.awhitehorse.com/coloringbook/ This site has images you can print from the web. If you use colored pencils they will come out better. If you do buy colored pencils, be cure to get them at a art/craft store. There you can get a brand like Prismacolor, Faber Castell, Rembrandt Lyra. the reasons I'm suggesting more expensive pencils is because the cheaper ones like kids use won't be as easy to draw with. These are softer, not waxy and blend easier, and produce much better results. Or you can try most brands in the store by buying them singely,or two or three at a time. They also have pastel pencils which produce a pastel like drawing. If you have a photo program on your computer you might even have a filter that can turn a normal photo into a coloring page. (You might need help with this if you have trouble operating photo programs) Like mine has an outline setting. ( another program called it, a photocopy filter..same thing) It just traces the photos major lines in black ink. This way you could use your own photos. Do a picture of someone you love or, even take your own photographs put them into the computer, (again you might need help with that, but it's realitively easy once you've got it down) you could even cut out the bad parts by cropping them, and make your own coloring pages. You can even use actual drawing paper, or pastel paper, cut to fit your printer, and use colored pencils, or thin pastel sticks, called "NU pastel". It would be your own then. You could create great works of art.;)Can you tell I'm getting excited by this idea?LOL It always helps me , if I'm stuck home to create things for gifts for other people. Or decorations for the house. That way it gives me the incentive to get it done. If you can work a computer from bed, there are all kinds of software that you can use to create things. To me crocheting is easier than knitting. A simple granny square is pretty easy once you learn the lingo. There are some places online that have free chrochet lessons for beginners. If you want to learn anything for that matter. There are always free lessons on the internet. I have some free drawing lessons for beginners on my own site. If you would like to look at them email me. I don't want to put the address of my site up because I don't want to seem like I'm advertising. Oh, There's something I started recently called Incredimail. (Incredimail.com ) It's free, and it's pretty trustworthy..doesn't screw up your computer with a bunch of junk. Anyway, It's stationary for email. You'd have to see it. But I recently got the letter maker.Which was resonably priced, and you can create you're own stationary with your own designs, for use in email. There are plently of sites that have this now, and clubs online, that make and share stationary through emails. So you'll get a bunch of pen pals through that.;)It's kind of fun to do if you have the energy to learn the program and all that. Hopefully some of this may have been useful. If not I'm sure I could come up with more.LOL Sue

I generally don't have problems with bowel movements, unless gassy and constipated. I suppose adding some fiber might help. Sue

Thanks for the reply. Hmm it seems not a lot of people that have POTS, have that squeezing feeling. I do know that two of the meds I'm on have side effects that might possibly explain this. I've been on Mestinon for a while. That could cause GI symptoms. I didn't think that was it, because I ever really had a problem the first few months, but when I was reading baout it, it says it can build up in your body, so maybe.. Also I have been taking Seraquel, at night, to help me sleep. I have read that can cause muscle cramps..I don't know if that's similar to squeezing or not. My CFS specialist said she got a note that said elderly patients could have cardiovascular problems with that med. She said even though I'm not elderly , maybe it was bothering me because of the symptoms I already had with POTS. Anyway. I cut down on that, and now am cutting down on the Mestinon to see if that has any effect. I think the worst part is playing this guessing game. Is it this med or that one..is it something I'm eating, whatever. Thanks again. Sue

I have asked about the squeezing in both the arms and legs. They weren't too concerend at first because of the fact that it did it on both sides so they didn't think it was a blod clot or something like that. But this last time I went to the GP, I showed him what he called a "neat little trick"..which was basically just standing in one place for a few minutes while my feet turned a purply red. I think it finally got it into his head, that it was real. Anyway, he said he could send me to another doc for a doppler test I think it's called. To check out the circulation. In the meantime I was just wondering if these squeezing feelings might have to do with the POTS or GI symptoms since they seem to coincide with the squeezing. Thanks fro the info. Sue

I was wondering if anyone else had noticed any association between having intestinal gas and incresed POTS symptoms...feeling very weak , unable to walk, dizzy, difficulty breathing. I have noticed that lately I have been getting different sensations also like a squeezing feeling in my arms and legs. I think I remember having that a while ago when I had bad gas problems. Now i seem to have to have been getting more gas, and not being able to bring it up.(burp) It seems every time I've had a bad spell of those symptoms, I also have gas problems. anyone else? Sue

thanks for that info. i've been on it for months and haven't had a problems, but i just went from taking it in liquid form to taking it in tablets. i used to take it in liquid form because my system was having trouble absorbing the time release capsule. Then they found out i could take in pill form three times a day instead. i had just changed from the liquid to the capsule a few weeks ago.so maybe these tablets are causing a problem then . thanks. i guess i didn't think it would cause a difference but maybe my body can't take it in pill form. thanks So much for pointing that out. Sue Sue

well, it's just a general support group, not specifically for illness, but it's better than nothing. I think i am going to see my doctor, cause like you said it's been a while and it's still bothering me. i just hope they're of some help. i'm so tired of doctors not listening. i don't think it's irrational to want an answer to this. thanks Sue

Thanks for the suggestions. I do think Ishould get his checked out. I guess i'll make an appointment with my doc , and I'll mention this stuff. I could be young for it, but I have found that I have pcos which is associated with insulin resistance. IR is associated with peripheal vascular disease. I'm not gonna jump the gun and say that's what I have but I'd really like to make sure. thanks. sue

HI. I?m still having squeezing feelings in my legs. Right now it's my right one. I don?t think it's a blood clot or anything because last week, it was in both legs and arms. What I?m having a hard time with is figuring out what the **** to do. I mean two weeks ago, I had my period. During that time. I was in a day program. Group therapy. It?s really the only ting I can do where I socialize because Medicaid will pay for the taxi. Anyway. I get there around 9;30, after the first part we walk across the street. I usually can handle that. Then during the next session I start to get sick. Lightheaded, just kind of weak. I usually keep my feet on a chair while I?m there so I don't get the blood pooling. So anyway, at lunchtime, I get up and feel so weak, and my legs are squeezing me, and I feel hardly able to walk. Seems the more I try to walk the worst it gets. Then I went home and lied down. I had a lot of gas, so I took a pill. That helped a bit. I thought maybe it was because of my period, but next week I was feeling better. Not great but able to stand up etc. So I go back. Same thing happened. Only not as drastic, cause I didn't wait as long to lie down. I also was in the movies for the first times in months last week. Had my feet up on the seat. Got sick halfway through. I was able to stick it out but I felt really lousy. So today I get the squeezing again in my right leg, and I went to the store but couldn't walk around much. I really never had this before to this extreme and I don't understand what's happening. I mean. I thought maybe the sitting all day was too much for me. But it never was before. Plus, sometimes when I walk it makes it worse. So I don?t' know what to do. , Sit, walk, lie down? I do know that today I tried using an ace bandage. (Because I don't have compression stockings.) On both legs to see what happened. It feels good on both legs both had different reactions. The left one which is feeling okay. Would get red without the bandage, the right one, redder. Then the left with the bandage seems to stay a more normal color. SO I think it's reacting the way it's supposed to. But the right foot gets red with or without the bandage. So I don't now what the **** is going on there. I don't know if it's lack of circulation or blood pooling, or what. I just don't know what the best thing is to do at this point. The only thing similar between the day I left program and the movies, is my feet weren't up on a second chair, they were perched on the same chair I was sitting in. it never seemed to matter before. Plus today it's just bothering me in any position, and I can't walk too long. I want to be able to at least go to this program I was going to. I mean at least I was getting out of the house, and have some support. I know this is a big confusing mess, but does anybody have any ideas? I am already on mestinon, and salt tabs. My salt level is normal too. Thanks Sue

Thanks for the info, It helps. So it seem like there's problems with the veins contricting and then dialating. I thought it was just the dialation, or just getting too much blood that was the problem. Yeah, the doctor that wrote that was Stewart. I'm wondering if anyone ever gets help with this, or do doctors just make up stupid reasons, like it's growing pains, or it won't kill you, so don't worry about it. I know my father has peripheral neuropathy which made his feet burn. He went to a nuerologist, and they eventually found a low dose anti depressant, that lessened it a great deal. If this is nuerological I would think a nuerologist should treat it. I tried going to one once but he was no help. He had no clue what pots was...and didn't really care. I guess it might help to have my doctor send the next nuerologist i try, some information about my case before seeing him. That way it's not like he's just taking my word that i have circulation problems. Sorry, just thinking out loud here. thanks again for the info. Sue

no, i haven't been tested for that. i will ask the doc about it. thanks. sue

actually at first it was both sides equally but then it turned into mainly the left leg. it was wierd because i tired standing still for a bit to see if that blood pooling thing happened, and the left leg turned a totally different color than the right, so i do think it's something with circulation. i just know i don't like this feeliing at all. thanks for the help sue

I had started a thread about this called circulation problems, and received helpful answers about the fact that other people did also have times when they have had cold feet with a blueish color, besides the blood pooling. i didn't however mention in my original post, about the strange squeezing sensation in the legs i get also, and sometimes pain. i do not know if this is something other people with pots experience and was wondering if other people have also had this problem. i'm a bit confused because when i read about vascular problems, they don't ever mention pooling, just loss of circulation, blood clots, and hardeining of the arteries. this bothers me because this does mention a squeezing sensation and pain. i don't seem to have this problem all of the time though, sometimes my feet will get the blood pooling, and get very red. the thing is i was supposed to see my doctor friday but she had to cancel my appointment and i haven't been able to get in touch with her, so i was just hoping someone here might have an idea if this is a typical pots thing or something else. i had read this following information on a page about a study on pots. i'm noticing that it mentions venoconstriction producing venous pooling. this makes me think that there is a constriction in the legs and that might explain the squeezing but that's just a guess. i was hoping someone here might understand the vascular problems of pots better than i do.here's an except from the page; ----sorry if i'm totally clueless about this stuff but my doctor never really looked very deep into the pots issue, just gave me meds and salt. now i would like to get a better idea of what is going on so i can have it treated better. any help appreciated. Sue

i am supposed to see my doctor tomorrow. i will ask about Raynauds. What I was wondering is if other people who have that get the blueish color and coldness also have that squeezing sensation around the legs.thanks Sue

thanks all. that's interesting. I was just reading about PCOS(which i just found out i have) and that it is strongly thought to be caused by insulin resistance. I also found that insulin resistance causes vascular problems- seems mostly lack of blood flow in the legs, similar to what i was describing,(forgot to mention i aslo get a squeezing sensation in the legs) also orthostatic intolerence is seen in PCOS and insulin resistance. Seems like this is worth questioning the doctor about. thanks Sue

I know people with pots often have blood pooling in the legs when they stand( as i do) had anyone ever had the opposite happen? I had my legs down while sitting and they turned blue, were freezing, and started to get numb. it wasn't like when your foot falls asleep because I was sitting at the doctors office and my feet were not still. i usually have cold feet when i'm lying down, but when i stand or sit for a while it usually gets red, due to blood pooling. This happened once before ..turning blue and cold i mean, i was wondering if this happens with anyone else? Sue

Have you felt the anti depressants have caused any other side effetcs? And have they helped with your depression? I know how it feels to be afraid to stop an anti-depressant for fear of getting worse. However I never really thought mine were helping me. The doctor I was seeing for years just kind of brainwashed me into thinking I shouldn't stop them. So I was taking Anafranil and Zoloft for years. I later found out that Anafranil as well as other tricyclic anti-depressants can actually cause high heart rate and orthostatic Hypotension. So with the help of my therapist I got off of it. I haven't really felt a difference in any way. I have also heard Zoloft can increase heart rate in some peoople. I have since lowered that. I think the problem is that although these drugs can help people they can also have lots of side effects. I think you have to weigh how much they are helping you with how much you feel they might be hurting you. You really shouldn't have bad withdrawel effects if you taper off them slowly under a physician's supervision.

Well, what I mean by changes is my BP is under 90/60 at one point in the day and another time in the same day it'll be a little high. I know normal BP fluctuates a bit but it just seems to go to extremes. When I first noticed the symptoms of POTS it was always increase heart rate upon standing and lowered pressure. Then for some reason it got all turned around and it was the opposite. THink this was due in part to Mestinon overdose. Now it just varies wildly. Either way the BP goes too low at times and the heart rate goes high. I was diagnosed by a CFS specialist who also treats POTS. He didn't do a TTT but based it on my findings at home + my symptoms, and then he's been checking the BP, and heart rate stand/sitting/lying himself as well. Sue

Well, I don't know if it directly affects it, but I do know that I get more out of breath, when my heart rate is higher. I have also noticed SOB seems to get wrorse when I am very tired, not matter what the heart rate. Susan