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friday

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Everything posted by friday

  1. 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
  2. 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 wa
  3. 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
  4. 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
  5. I generally don't have problems with bowel movements, unless gassy and constipated. I suppose adding some fiber might help. Sue
  6. 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 sa
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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. Lighthead
  13. 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 thi
  14. no, i haven't been tested for that. i will ask the doc about it. thanks. sue
  15. 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
  16. 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 circul
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. This is what I was talking about in the last post. It's seems like us patients want a better understanding of why this is happening but docotrs are just concerned with normal limits. Although like I said. This doesn't seem normal at all. so why doesn't that matter to them? I could see if you're feeling perfectly fine, but if you're having symptoms that are affecting your life it should matter what's going on. That's how I found out I had POTS to begin with. I kept having low normal blood pressure readings. Then I looked up low blood pressure symptoms, and it was exactly what i felt. So I got a
  24. P.S. this is interesting. I will have to chart myself and see if that is true in my case. Susan
  25. That's the thing. They always think if it's in or around the normal level it's fine. Like our only concern is whether it's life threatening. Sometimes I think maybe the fluctuations themselves aren't normal and I would like to know if that's effecting the way I feel. Like maybe if they were more level I might not get those days when I suddenly get exhausted out of the blue or about a hundered other things like that. I think what they fail to understand is this effects the quality of life, and I feel the more I understand what's going on, the more I can help myself. Unfortunately most doctors d
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