kerrilyn

That's interesting. I just had a pelvic CT scan that showed I have multiple hyperdense areas on my liver, presumed to be cysts. My serum liver values are all fine though. I've always had issues with my hormones and hormones are processed through the liver so I figure it's important to support the liver. Which I may not be doing enough of. I wonder what fatty liver would show up as on CT also?

Thank for this info. I've wondered if they were just different names for the same thing and I wasn't able to find information that really cleared it up for me. After reading what you have mentioned I think I fall more into the NMH category because I get that really sick feeling and feel like a immediately need to lie down. I usually get some sort of warning. However, twice in the last year I did come very close to fainting and it seemed to come on quickly without much warning.

Hi all, I've not been diagnosed yet but I'm having my first Tilt Table Test soon with a specialist that is listed on the main site. I was just wondering, is a TTT strictly just a diagnostic tool? Or does the information gathered from the test help to determine a cause of POTS or OI? Can it determine where blood is pooling primarily, such as the legs or the abdomen? I don't think it's going to be a fun experience and I have an idea of what to expect regarding the test itself but not what it could mean. Thanks.

I have endo too. Never thought it could be related, but maybe it is.

I had that for many years, would bring me to my knees and take my breath away. I always thought it was linked to endometriosis, but now I'm not do sure. I think more likely it involved pelvic floor muscles. It's interesting that Sophia mentioned the pudendal nerve. I'm having more nerve pain now. The pudendal nerve is linked to Interstitial Cystitis / Painful Bladder Syndrome and Vulvodynia. I've had symptoms of vulvodynia for many years, before docs knew what it was and the pain 'must be in your head' sort of thing. Now they realize it's a neurological disorder, but many docs still have never heard of it. The pudendal nerve and vulvodynia are mentioned here: http://www.obgyn.net/women/women.asp?page=/cpp/vulvodynia I think there is also a hormonal component to these contraction like pains. Since I started using bio-identical progesterone cream, my intense period cramps (including these really horrible contraction ones) are gone. (((I'd would have included quotes in the thread, but I haven't figured that out yet)))

Hi, I posted about pelvic congestion syndrome (varicose veins of the pelvis) last week http://dinet.ipbhost.com/index.php?showtopic=14921 I have endometriosis too, and have not had children either. While multiple pregnancies is more common with PCS, it's not the only time it can occur. It's something I've been reading about lately as a possible connection to my pelvic pain. I have a CT scan at the end of the month. Not sure if it will show anything because if you are in a supine position the veins will not be as swollen. My pain could also be nerve related and I did have an dx of degenerative disc disease in my early 20's. I don't know a lot about EDS. I didn't think it's something I could have, but now I'm not so sure. Hope you get some answers.

Yes, thanks for the link. Sounds like a great doctor. He was educated near here, maybe there is hope there will be another great doc from around here who stayed in this area. (((Wishful thinking))). When doctors are listed in the physician list on the main site and it says "Will treat children 13 years and older", do you think that means they ONLY see adolescents?

I don't think it gets enough recognition from doctors yet (and neither does POTS), and is easily missed on traditional testing. My doctor is sending me for a pelvic CT, hopefully something shows up. I'm not sure if it is related to POTS, but I'd like to rule it out. Hormonally something is going on, and that can affect POT symptoms too which seems much worse lately. I went to my GP today and I took a list of all my symptoms, including my poor man's TTT info and she admitted this is not something she understands but will try to send me to someone who will. YAH! Maybe I'll get some help, at least a start in the right direction.

Hi, I've not been diagnosed with POTS, but I've had many symptoms, which worsen in hot weather, for about 20 years now. I'm finally starting to piece some things together. I'm 40. In my 20's I had severe leg cramps, mostly in the evening, which got worse in the summer. But I had no signs of varicose veins, spider veins maybe. I also noticed if I drank alcohol I would get the same horrible leg cramps, and a friend who was a nurse said it sounded like blood pooling in the legs. In my late 20's/early 30's pelvic pain started and I was diagnosed with endometriosis. About a year ago I started getting a different kind of pelvic pain. It burns, similar to nerve pain, occurring in the evening/night, and happens primarily when estrogen is highest in my cycle. I've read that estrogen can cause veins to weaken, I've always been high in estrogen. So, now I've come to strongly suspect this is Pelvic Congestion Syndrome, which is basically varicose veins of the pelvis, a pooling of blood in the pelvis. So first it was the legs and now the pelvis. I didn't even know what POTS/NMH was until recently, but I did a poor man's tilt table test and my HR raises 30 bpm when I've stood for 10 mins, if I stay standing I feel like I will faint. Also, my diastolic pressure bounces around in an attempt to keep me upright. If I do an activity or exercise that raises my heart rate I feel like I will faint, that's been going on about 10 years. Between the pelvic pain and the light-headed/dizziness and pressure in my head it is becoming increasingly difficult to be upright for more than 5 mins at a time, or I will pay for it later. My doctor has never been helpful and I don't want to be sent to a GYN because I have pelvic pain, when I think it is primarily a vein problem. Have any of you experienced similar pain? Can you give me more info about vein dysfunction in regards to POTS/NMH? And what sort of specialist should be seen? Thanks in advance.

I do that too. I remember first my mother and then later my husband often asking me, 'What are you staring at?' I didn't even realize I was staring, usually looking right past them for some reason or slightly up at the ceiling. Just me 'zoning out', but I was still aware of my surroundings. Huh, I never knew why I did that. I mix up my words all the time. Sometimes speaking and sometimes when I type. It's frustrating but it's good to have to have a sense of humour about it.

Thanks for the info! Now, so many things including not being able to exercise, much worse in hot weather or having to lay down after a simple BM and recover finally makes sense I have a lot of the symptoms listed on the main site's POTS page too. I can't imagine not fainting if my HR got as high as I've read with some POTS patients. I'm surprised it went up 50 just standing still, I never thought it raised at all - D'oh. Chaos, I do seem to develop NMH (or something like that) the longer I stand still, within 20-30 mins usually. My HR and BP drop like a stone and I sure feel like I will faint if I don't lay down immediately. With NMH I read that the systolic should drop 20 or 25 and diastolic 10 (may not be remembering that correctly). My diastolic drops more than that because it increases first, not sure if I'd met the 'technical' requirement with that. I suspect low blood volume. But I also read in the archives that people mention trouble with automatic BP monitors. I'm not the only one! I usually get an error message with ours, but works for my husband every time. It's possible my systolic does drop and that's when the machine errors OR because I get an error and I keep retrying and maybe I'm pushing my levels up more than they normally would be? Don't know if that's possible. At any rate I'm done testing myself for a while. I feel absolutely horrible for days after these tests.

Hi. I've had a lot of POTS symptoms for 20 years (what I know now are POTS symptoms anyway) but I didn't think I had it because I don't have chest pain, palpations or always feel light headed immediately upon standing. My symptoms are delayed and I've never thought my HR was an issue. There is so much I want to learn/read about now. Yesterday I bought a HR monitor (watch with chest strap) and did a Poor Man's TTT. Supine my HR was 60 bpm, immediately upon standing went up to 95 bpm very briefly and then back down to 75. Gradually it climbed again. At 10 mins it was back up to 95, and I was having symptoms (light-headed). At almost 20 mins standing it maxed out at 109 (symptoms were really increasing and I had to force myself to stay standing) and then it started to fall rapidly and within a minute it was down to 66 and I had to lay down immediately because it felt like I would faint (symptoms included more dizziness/headache/vision/hearing disturbance to name a few). Even laying down it bounced back up to 95 bpm and then gradually came back down to 65 and I started to feel better. Does this sound like POTS? Recently I tried a PM's TTT using an automatic blood pressure cuff to track BP and HR every 5-10 minutes while standing. The machine is a little quirky for me - doesn't always work, but results/symptoms were similar, although not as dramatic because I didn't stand as still as yesterday's test. It showed my systolic level didn't really change but my diastolic pressure increased 23 points immediately upon standing (110/51 to 112/74), it fell again (110/63) and by 30 mins standing had increased to a max of 109/80 (HR maxed at that point too) and quickly dropped to 108/63. Again that was the point I felt I had to lay down right away. I'm interested in info or suggestions about the fluctuations in diastolic pressure in particular - anyone know what this could mean? Info I find about NMH and/or delayed orthostatic hypotension says systolic must fall or they fall together - but mine doesn't seem to. I can't find where I fit 'textbook criteria' for either diastolic hypertension or diastolic hypotension. If I'd only taken my BP supine and again after 30 mins it wouldn't look like there was much change, but it's the rise and fall of the diastolic and HR inbetween that seem to cause me to nearly faint. TIA