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Everything posted by sarct

  1. Thank you, Naomi. I have an appointment with Dr. Man in Michigan on the 22nd, my birthday. Maybe he can give me some good news. It sure has been a roller coaster over here with all of this coming back to me. Lieze, I'm sorry you had to go through that. How awful. Do you know what exactly caused the reaction? I wonder what exactly caused my whole body to essentially lose it's blood flow, and then have it come racing back? I am assuming that is what happened. Do you think all of our blood just pooled to the lower extremities? Gosh, that's frightening. Sometimes, the things my body does really scares me. Yesterday I got out of the van after sitting in there for an hour reading a book while my son played on the play structure. I took a few steps forward to go call him to the van, and I began staggering. It was like I didn't have proper control of my limbs. I was so embarrassed. I kept wondering if people thought I was a drunk mom wrangling up her kid, and going to go driving off intoxicated. It passed after a time, and I regrouped myself, but it was just awful, and scary to lose control of your body like that, and to be on an alternate plane of reality. Like my mind wasn't all with me for a good 2 minutes.
  2. I had a tilt table test done back in 2008, and I was tilted up for about 11 minutes. Nothing happened, so they ran the adrenaline. Just before they were about to end the test they had said they were about to stop. I told them I was glad, becuase I was beginning to feel sick. Well, that caused them to continue the test. I kept asking them to stop the test, because I got progressively more agitated, sick, and sweating like crazy. I began screaming at them to end it, I remember a state of trying to hang on with everything I had, but nothing would alleviate my feelings, so I went limp. I don't think I fainted. I conciously remember giving up. I can't explain it. Once they put me horizonatal I must have at some point gone unconcious for a spell, because when I came to the techs were in disagreement on what happened. If I had crashed or I didn't. I didn't get to know how this concluded, because all of a sudden I got the sensation of a limb that is asleep waking up, all over my body. I was wretched with pain as blood began flowing through my whole body. My stomach, I threw up. It was a terrible mess. I was in pain for about 10 minutes. I wanted the straps off so I can move my limbs and run away from the pain, but they would not release me. I was in agony. Once I began feeling better the tech looked at me, and said, "well, you failed" So, I thought I failed it. But after going to the doctor I learned that I had passed it. Honestly, it felt like I had died and came back to life. How could I have passed the test? Has anyone ever had this tilt table test reaction before? I just made an appointment for a doctor I found in the DINET physicians list, and I am going to start the diagnoses process all over again. I have been diagnosed with POTS, back in '08, but the doctors I saw didn't really know about the condition. Now that I am getting symptoms again, I want to really delve into what is wrong with me, and try to figure this out.
  3. I get head pressure as well with a change in position. My heart will go crazy, and my head will get so much pressure it will ache. It subsides after a few moments. I am not sure what causes it, though. My BP is pretty low. It rarly ever gets to 100 systolic, and likes to stay on the 50's-60's diastolic. I wonder if it is a BP spike I get from time to time to cause the pressure, but what it feels like to me is a surge of blood flow going to my brain, and my brain reacting to the new blood flow. Like, how your hand throbs when blood rushes through it after it was made numb.
  4. Hi, I use to come here back in 08, and then I became pregnant. I was in the process of trying to figure everything out. I was diagnosed with POTS, rather half hazardly, about 6 months before I became pregnant. Pregnancy was so sublime; not having those feelings. My son just turned two. I am within ten punds of my pre-pregnancy goal weight. I noticed that if I went under a certain weight I would begin having problems. Now I am 5lbs under that weight, and it's coming back pretty substantially, and my heart is just crushed. I am wondering what I should do. Is there even a point to seeing a doctor at all? I mean, they weren't much help before. I was put on Zoloft which created a panic attack that made me feel like I was dying. I had never had one in all my life. I tried florinef (sp), but I had really bad symptoms from that. I had to stop taking it immediately. I began puffing up like a balloon. I don't even know what I really have. I passed a tilt table test just before becoming pregnant, but failed the lie down sit up, stand up bp and hr test the doctor gave me. That was how I got diagnosed with POTS, but I didn't even get that until a friend told me to check out Greg Paige from the Wiggles. He had a video of why he was quitting, and after learning his diagnoses I asked my doctor if I had it too. He said I have POTS, after a quick google search. Sigh!! So, now I am just wondering what I should do. I see the disheartened look on my husbands face, though he is making every effort to conceal it. I know he has enjoyed the past three years of not having to deal wih this. The guilt is setting in. I am thinking of quitting my part time job as a daycare provider at the gym I go to, because I don't want the undo pressure. I have to go to work, but I dreading it, because I am so exhausted. I am so sorry to ramble on. I know I should see a doctor, but going through all that again...I just don't want to. I feel like a dog chasing it's tail.
  5. Thank you for your quick replies. I am so frustrated, because my OB (and he is a great ob) has nothing to say on the matter as he is unfamiliar with the condition, and my neurologist who diagnosed me told me to go online to find info out on pots (offering little input). I did have an appointment set up at u of m with a guy who knows about this condition, but when I went in I saw some grunts instead who had no clue, and was told the guy I had the appointment with had to have surgery and will be out for 6 months. So I am having a hard time trying to figure out where to turn right now to get answers for my condition. I am so frustrated. I do feel great. I worry about post partum, though. Will things com back with a vengeance? That is what happened after my weight loss. My condition has always been tolerable, but when I lost weight I went from just being a person who gets light headed or faints from time to time to a chronic life altering mess. I began my symptoms at age 8, so none of this is new per se. The intensity is much different now. I have been monitoring my heart rate and having some fun with that, actually. My husband and i will perform the same task with the same exertion of effort and he gets to see just how much harder my heart works performing the same task. It has really helped him to understand, and lets just say I am no longer responsible for dishes anymore. My heart rate would go as high as 178 scrubbing dishes. I am still getting tachy when I am standing, but it is not affecting my ability to function and it isn't as high. My baseline bp is also elevated which I think is contributing to my lack of symptoms as well. Now if only I could find a way to stay pg all my life!!! lol
  6. I believe this was the name of the episode, and in this episode a woman was diagnosed with dysautonomia (can't remember her exact diagnoses). In the episode she mentioned that she miscarried her baby at 6 months, and her doctor told her that she probably didn't have enough blood volume. I was wondering if this is something that happens to those with dysautonomia? I am 13 weeks pg, and scared my condition can harm my baby. In the beginning I was still having pots symptoms, but the last several weeks I have been feeling better than ever. I was just curious of the risks involved with pots and pregnancy. Should I be concerned? I am not on any medications for my symptoms right now, so I have no risk there.
  7. Yes my life is harder, but I am still happy to have been born. Just because my life isn't "normal" doesn't mean it isn't worth living. I don''t regret my parents making me. And if my children turn out to have pots I will not regret my decision to have them.
  8. Thanks for the replys. I am glad you mentioned the drinking thing. My son drinks quite a bit of water, and he always asks for very cold water with ice. He will also be engaged in an activity and then out of nowhere he will just lay down, and say he is bored. After a few moments he is back and playing again. I think I will have his ped do a laying to standing test on him. He thinks it is fun to go to his well check ups and get all the tests. He is not scared of that at all. His doctor did mention to me that he has a large lung capacity. She spent a lot of time listening to him breath from his back, because she was impressed with how large his capacity is. He liked that.
  9. Nothing specific has happened, but there are some things that have me wondering. He is 5 years old, and has begun kindergarten. Every morning he has to line up at the door and wait for the bell to ring. He can not stand still in the line. Because I tell him he must stand still to not bump his friends he now sits on the flower bed border thing and jumps up when the bell rings. He over heats when we are in a line or standing or walking. I am currently pregnant and I worry that I have passed my condition onto my child, and now I worry about the child inside me too. Andrew is very well behaved. It is like he physically can't stand still when need be. Does anyone have advice on what I should do? I don't want to run a bunch of tests on him if it isn't necessary. It is just a feeling I get. I was 8 when my symptoms started. He reminds me of me when I was young and going through things very similar. He isn't misbehaving when he is moving. He sways, twists his body, or goes from foot to foot. Not in a add way.
  10. My son is 5 and has never been vaccinated. The CDC has finally admitted the flu vaccine is not effective. http://www.naturalnews.com/024218.html We never have and never will get this or any vaccine until they can stop putting things in it that poison, mame, and kill children.
  11. I have never really gotten slurred speech, but I do put little effort in saying my words and mumble to the point that I am asked "what". I get so mad when I am forced to repeat myself. I just can't put the upmph in my speech at times to get it to the right decible. It's especially bad if we have been walking through the mall, or at the store and I am feeling icky. I am also quite short and snippy at these times, because I am not feeling well and really go into "hurry up to the car so I can sit and relax mode"
  12. and midway you completely crash? I tend to be doing this a lot. I will start something feeling fine, and then all of a sudden I am hit with it, and have to lay down. It's hard for me to guage what my limits are, because they vary so much day to day. And I feel fine until I start a project, like weeding, or cleaning my wall...I will be doing great and then BAM, I am on my back unable to do anything or even think.
  13. I love the "I've done that before" people. I swear they act like one time they fainted and it was no big deal for them, so why am I complaining so much. Try having 10-20 near fainting episodes or feeling bad in some sort of way everytime you stand or exert yourself each day. Then I will be fine with no episodes and people will say how come you didn't do it that time? How come you can do this activity now, but you couldn't last week? Even my own husband. How come you couldn't wash the dishes last week but now you can go shopping. Some days I am fine, but this week has been a blessing, because the temperature has dropped, but most of July and August I was laid up. I have been miserable, and my hubby was starting to wear thin. But before when I was feeling fine I was able to reach for the stars and push myself without consequence, but I noticed this week that on the days I am feeling fine I will get into a project and wipe myself right out. I cleaned my van out, vacumming it and as soon as I was done with the floors I was done altogether. I use to be able to rally and find some reserve to keep plugging through till I finished, but no longer. When I am spent I am spent these days and I can only go lay down till I can recover which takes most of the day or the next day. My windows are still dirty and my interior needs wiping still, but I can't get the energy to finish the job. It's almost like I am developing phobias about doing things. I am avoiding tasks for fear of pushing myself too much and getting sick for it.
  14. I had a very similar experience as you. I was 10 minutes in and began getting kind of sick. My mouth started watering, I began sweating and feeling nauseus. I started telling them to put me down and they said not till I passed out. Now, I didn't faint, so much as quit. I was screaming and freaking out and then I collapsed, but didn't pass out. Then they put me down, and I was cold and hurting. My whole entire body felt like how a limb feels after it's been asleep. It felt like the blood drained from my whole body and when I went horizontal it all came back. Especially my arms and my stomach. I kept telling them I needed to get up, but they made me lay there till I recovered. I do remember hearing the techs arguing. One said my levels dropped one said no. Then one said I failed, but my report said I passed it. I have no idea what happened that day. It was very traumatic for me.
  15. I am not sure if there is a link, but I have always blamed my anemia for my lethargy. The last few blood draws I have had have been normal, and my pots is at it's worse right now, so I don't know what to think.
  16. I BBT as well. We are trying for a baby right now. My normal temp is usually 97-97.5 as well. A couple days before ovulation I begin to rise,then drop back down and rise slightly the day I ovulate. Then I stay there till a day or two before my cycle starts where I drop back down. If BBT is not peaking you may not be ovulating. I would go over your chart with OB. They could tell you if you are ovulating or not. You can still have a normal cycle and not ovulate. Also, the most accurate way to chart is when you first wake up and don't lift your head or move in bed. I wake up reach over for the thermometer and check. Now this may be tmi, but the most accurate way to check is vaginally. Your mouth can vary as well as armipt checks. My OB says to do an internal BBT.
  17. I am really sorry you are in this mess. I would consult a lawyer, and see where you can go with it. Good luck to you. Sounds like this hospital needs to be taught a lesson.
  18. That is really awesome. I fainted on the eliptical and split my chin on it. I am scared of it now. Keep up the good work That is a lot of exercise. Can i ask what you started at?
  19. thank you for your kind words and advice. I feel better emotionally today. I really am the type of person who usually goes at something full force. When I start something I don't stop until I complete it, and I really just get frustrated when I can't do the things I need to do. I have really had to work on making the expectations of how my day should go realistic. It's just I have so much I want to accomplish. I have scaled back cleaning my house, and now hubby has signed on to wash dishes for me since standing for long periods (any period these days) makes me feel sick. I will write up what the report of my tests revealed. Thank you for requesting ambulatory electroencephalography on Christina. She is a 30 year-old woman with recurrent spells of orthostatic presyncope with altered responsiveness and involuntaty movements. She is taking no mediacations known to affect the EEG. This is a 24-hour video electroencephalogram recorded from 2/20/2008 through 2/21/2008. The recording was performed with 16-channel bipolar connections using standard lead placements and and reviewed in a logitudinal bipolar montage. This recording was performed at sampling rate of 200 per second per channel. EEG was recorded at the direction of pushbutton following each event. EEG was additionally stored at the direction of a computerized seizure detection algorithm, automated interctal epileptiform activity detection (spike detection algorithm), and timed EEG samples. Background EEG was sampled throughout the night every tem minutes for 20 seconds. Time-locked video was recorded along with the EEG Summary: This was a very good quality study. The awake EEG contained a very well-developed, well-modulated, symmetric, synchronous, reactive, posterior dominant 40 to 60 mcv, symetric vertex waves, K complexes, sleep spindles, and slow sleep waves. The patient had a total of four pushbutton events. These were described as mild spells of lightheadedness without altered conciousness and abnormal movements which accompany her more severe spells. Video revealed that each of these events occured immediately upon standing. No abnormal motor activity was seen. 'There was no significant change in the EEG activity beore or during the symptoms. She had a resting sinus cardiac rhythm of about 70 beats per minute while supine which increased to 110 beats per minute upon rising during these events. The day I had the test done I had only mild episodes. Nothing to write home about, So I wonder what a full on episode reads. Also he had the privelage of testing me while in the midst of an episode. He had me do the lay down stand up test and when I stood up I had an episode and he kept my upright (basically I was like laying on him while he took my BP and heart rate during it). It was killing me to stand there with all my weight on him. When I was able to sit I was sweating buckets, and had the worst headache of my life. My BP went down to 65 over 38 and my heart rate went to 156. This is the second time I had an episode monitored by him. the first one I am not sure what the numbers were but they were not as bad. I had an appointment to see Dr. Gilman. I got his name from the list here, but he had to have surgery and is out for six months. The associate of Dr. Gilman I saw was really concerned about my low BP. He asked how far I was willing to travel to get treatment, because there is only one person to see in this country for what I am experiencing. He apologized for not having answers for me yet, but ensures he will find help for me. Meanwhile I wait. Sigh!!! I am not taking anything to treat me since going off the zoloft. I was pregnant and had a miscarriage and we are in the process of trying again. I drink a gallon of water a day @ 145lbs. I am 5'7 arge boned frame so I am sure the amount of water I drink is sufficient. I add electromix from whole foods to one 30oz glass each day since I don't care for sports drinks. I have sea salt from all over the world. I have sent good money on good quality salt, because I adore salt. My hubby often jokes I am trying to cash in his life insurance by killing him with salt. lol I like to cook and can't do much these days. I feel guilty for not making the meals I use to. I feel like I am putting my whole family at a disadvantage. My son suffers, because I can't take him to the park lately or play in the backyard or go on walks. These are activities we use to enjoy. I was riding my bike, but since the humidity and heat kicked in that is out. No more of that. I think things will improve once the temps drop. I think that is my biggest problem. I keep having swells of heat like a wave of it wash over me when I am sitting or doing anything. Like I feel my temp rise and then fall in a rush, my heart surges, and I am just so tired. I feel like I am walking through life with gravity boots on. Every movement is taxing it seems.
  20. I'm not kidding. I can't believe how hard life is right now. I am beginning to feel a bit depressed. Everyday I am exhausted before I even get out of bed. I am having non-stop episodes. I am miserable. I am actually beginning to think my episodes are making me dumb. I just can't think common sense thoughts anymore. It's embarrassing. I am being petted by my family, because they will say it's ok Chrissy, we still love you even though you can't think. I feel like such an idiot. I am not on any medicine. The specialist I went to see was out on medical leave so I saw his associate who said I don't have POTS, because people with POTS don't have constant low BP. Mine was 80/52. But my other Neuro said I do after seeing the results of my 24hr eeg monitoring. I am livid. I have no idea what to do next. I don't go back to the specialist who has no idea what I have until October. Meanwhile I am so sick of being a waste of space I decided to scrub my walls today, and I only ended up getting three door trims done and barely made it to the end of the hallway before I was so spent I laid on the couch for 3 hours. UUUUUGH. I hate this. I am thinking I am so bad due to the heat. That is my guess. I mean, it's just terrible. I can't live like this. Sorry I just needed to vent. I am just beyond frustrated with doctors, and people diagnosing me and telling me what to do to help myself. I don't know what to do. I have tried florinef, stockings, midodrine, and zoloft so far. Zoloft messed my intestines up so bad I thought I was going to need some sort of surgery or something. Sad since it was the most effective in dealing with my condition. I heard the tail end of Dr. Grubb on the Dr. Radio on Sirius. I wish I could talk to him. It was the encore show on the weekend, though. He didn't really talk about POTS from what I heard. It was more fainting from needle pokes and pain. He did say one of his patients would actually have her heart stop during an episode. Also he said that spontaneous death can occur too. That was scary to hear.
  21. Thankfully I was taken off the Zoloft a month or so ago. I just found out I am pregnant. The past two weeks I have been feeling really well. I was actually thinking i might be in the upswing of things. Then I found out I was pregnant. I think the excess blood volume might be keeping my symptoms at bay. I have my specialist appointment bumped up to July 7th. You better beieve I have a lot of questions. I am calling everyday to get a sooner appointment. They have no cancellation list in place here. You just have to keep calling.
  22. It's hard to answer your question since I never feel like I am in danger. Maybe since I have been doing this since childhood helps. I had one (what I am thinking is a panic attack) when I first started zoloft. After the first one I had two episodes where i felt like I was going to head into another attack, so I just laid on my bed and did some yoga breathing to calm down. My episodes are scaring me these days since the intesity is increasing, but while in the episode I don't panic. I just get slacked jaw and stare at something till it passes. Then I react to the killer headache i am left with when I can start functioning again. I get scared once I am out of it though. Not in a physical way, but I think about all the differences and wonder if this is going to kill me. My mind doesn't think to panic, so I never have to worry about that. I just sit staring and I don't know what my mind is doing. Kinda focusing on the wave, I guess.
  23. Hey, the hand over head thing worked great. Thanks. They go away almost instantly, but come back once the hand is down. It's so unsightly. This just started yesterday. I am not on any meds right now as the zoloft I was on was causing horrible gastro issues. I think it might me the heat. Not sure.
  24. Is it typical to have th veins in your hands get real prominent? They look kind of creepy. I think it's due to the warm weather right now. My hands feel tight and my veins are huge and right to the surface. I was just wondering if this was a pots thing or something else. My hands just feel real tight and kind of like they would when I am retaining water, but they don't appear to be.
  25. Stairs cause me to go breathless and brings on an instant headache. I hate stairs, but can climb the 4 going to my house no problem. I often wonder why I can do somethings fine and other things cause problems. Also why one day I can do something, and other days I can't do it.
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