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Everything posted by IDreamInColor

  1. Yes, I have been thru extended periods of not eating. The longest period went for 6 months, I barely ate anything, food repulsed me, I tried to force food, but I couldn't. I can remember my family getting excited if I was able to eat half of a cracker.
  2. Seen my doctor today and he seems to think I may have a connective tissue disease, ....as if POTS and graves disease weren't enough! gah!!!! Does anyone else here have a connective tissue disease? I'll be going for more testing and all that, but in the meantime my symptoms seem to fit the Sjrogrens form of the disease. Is anyone here familiar with this disease?
  3. Just before I was diagnosed I was horrendously sick and ended up in the ER, my diagnosis was "dehydration" they kept me for two days and released me. Well, they were correct, I was dehydrated, little did they know I had pots. I am constantly dehydrated despite drinking fluids all day long, lots and lots of fluids. Sometimes I am so dry I can't swallow, and at the same time I am bloated from all the water I drink, I feel like I should slosh when I walk around. This might be TMI, but I pee very little, for as much water as I drink I should be pee'ing every two hours! SO here is what does not make sense. I drink from the moment I wake up in the morning until the time I go to bed. If I am not pee'ing it out where is it going? It's certainly not hydrating me, and it's not coming out of me, so where is it? I seldomly sweat so I'm not losing it there either. Doesn't make sense.
  4. It just came out of the blue one day, all of a sudden I had the urge to chew ice,,and I'm talking all day long every day,,as in fill up a large mixing bowl with ice and just chomp chomp chomp. It's like an addiction, a need. I googled it and learned it's called PICA, and is usually caused by an iron deficiency. I had my iron checked and it was fine. The doctor said it could possibly be any number of vitamin deficiencies. Just curious if anyone else has had this?
  5. If I only knew what was causing it I could deal with it alot better. But the not knowing is what makes it scary. It's a horrible feeling. Makes my head feel so messed up.
  6. Wow, I really didn't expect for that many of you to experience this same thing. I guess I should chock it up to POTS. This and the nausea are my two worst symptoms, blah!
  7. Dx'ed with POTS 6 years ago, but I've had this monster since I was 15, I'm now 46. I have many many symptoms, the nausea, the chest burning, the blackouts when you stand up, and all those common symptoms but I have this symptom which comes and goes and frankly it scared the doopy out of me. It's a horrible feeling in my head. I don't know if this is related to pots or if it's something completely different going on. To me it sounds like something neurological, I'll try to describe it the best I can. When I get this symptom is lasts anywhere from a couple days, or as long as a week or two, and then it will subside for a while, only to come back again. I feel it in my head, it's not a lightheaded feeling, it seems to be in connection with eye movement. It almost feels like when I move my head my eyes are trying to catch up to the head movement. It feels like my eyes lag behind and constantly trying to catch up to the head or eye movement. And it makes my head feel horrible, just a very "off" feeling in my head. Gosh I'm having a hard time describing this. And also, at times while having a flair up with this particular symptom I also get leg jerks. All of a sudden I get a more intense horrible feeling in my head and within seconds my legs make a sudden violent jerk. I can deal with all the other symptoms, the nausea, chest pain, blah blah blah,,,but THIS particular symptom scares me, it seriously makes me want to sit and cry. I went about 3 weeks without this symptom, but it came back this past Sunday, and has not let up since then. I have been to two neurological doctors, and neither one were of any help, they weren't familiar with POTS, and of course blamed it all on anxiety, grrr!!!!! I'm currently searching for a different doctor. But in the meantime, can anyone relate to this? Is this a POTS symptom, or something completely different?
  8. I'm in the exact same sitchy as you, I have pots and graves disease, my tsh is .005, and I've lost half of my hair. My doctor said its most likely caused from either of the two diseases. He said either my blood isn't getting to my hair follicles enough because of pots,,or,,my antibodies are attacking the hair follicle.
  9. For the past few days the veins in my hand will protrude and get very itchy, it's driving me crazy. Is this a dysautonomia thing? Or something else? Anyone else experience this?
  10. <Raising my hand> I was diagnosed with graves disease/hyperthyroidism back in 2004, shortly after that the POTS hit good and hard.
  11. I seem to have inflammation all thru my body, my entire digestive tract, my sinuses, even my gums, as well as female parts. I can't help but wonder if its all related to the dysautonomia in some way. In August when I was hit hard with the dysautonomia is when all the inflammation started. The inflammation lasted for about 2 months, then subsided, but now it's all back. Does anyone have any insight or answers to this?
  12. I experience 37 separate symptoms, but the two worst ones are the dizzyness, and the nausea.
  13. Symptoms since I was a teenager, but never had a diagnosis, but not debilitating until this past August, it came on with a vengeance. I had just taken a shower, and layed down on my bed for a sec to catch the weather report. After that I got up to take the towel off my head and was instantly extremely dizzy and felt funny all over, and my body began shaking uncontrollably. It scared me so bad hubby called for an ambulance and I went to the ER, where they kept me for 2 days and insisted I was just dehydrated, then sent home feeling worse than when I went in, I continued to worsen and became bed-ridden.
  14. Yes, when at my worst I have zero appetite. I've lost 50 lbs in the past year. Right now I'm doing better and my appetite is back with a vengeance,lol
  15. Wow, I'm so glad you all said that general is better than twilight, it eases my mind. However, I am worried about the nausea after general, did anyone experience that? The surgery is scheduled for Jan 12. They actually wanted to do the surgery earlier, Dec 22, but I told them too many Christmas have been ruined by health problems, so I decided to wait.
  16. I have an appointment today and will learn wether or not I will be having surgery. The surgery doesn't scare me, but the anesthesia does. I had an endoscopy this past September and it was done with just the twilight sleep, and it took me 3 hours to come out of it, and when I woke up there were 3 nurses around my bed telling me they couldn't get my blood pressure up. I've had twlight sleep in the past before the POTS hit hard and I was fine, no problems. But with this surgery they will be using general anesthesia, not twilight, and it's scary to me, what if my blood pressure bottoms out? Has anyone had any experience with gen anesthesia with having pots?
  17. I've mentioned before how I have myoclonic jerks in my legs. I'm seriously thinking it is some kind of seizure activity. I've been having this strange feeling in my head, it's not a dizzyness, just a strange hard to describe feeling. And then just seconds before my legs jerk the strange feeling in my head gets intense. The strange feeling in my head can last for hours, or days on end, sometimes I get a day or two break from it, but it comes right back. I don't know if it is seizure activity or not, but it sure seems like it to me. Any thoughts? Or advice?
  18. Yep, it was nothing but a dirty joke. As evening progressed, the dizziness, nausea, legs jerking, headache, and lightheaded popped back in and said..."hey, did you miss me, here I am." And then it let out a very sarcastic laugh. I knew it was too good to be true. Guess I spoke too soon
  19. I've been bed ridden since the beginning of August, unable to do anything. But for the past 3 days I've been feeling like my old self again, aside from a few minor symptoms. I just finished cleaning my kitchen, including standing on chairs to wash windows, and I was fine. I went from a bazillion debilitating symtpoms and unable to stand up for more than ten minutes, to back to my old self overnight? Is it possible that I'm going to be ok? Or do you think this is just a bad joke and I'll go back to my bed tomorrow? I would hate to get my hopes up only to be shot down. Also, I am having a new symptoms, and wondering if anyone else is experiencing this. I am having a severe pain in my left temple. It only lasts a few minutes to an hour then goes away. Any idea what might be causing it? It feels to me like vein pain right in my temple.
  20. I'm just wondering about those where florinef works, what symptoms does it alleviate? In what ways does it help? What symtpoms does it improve?
  21. The dizziness is one of my worst symptoms, I have the hardest time dealing with it. I tried meclizine for it, but it doesn't seem to help in the least. How do you cope with your dizziness, have you found anything that works?
  22. I've had pots symptoms since I was a teenager, but they were manageable and never diagnosed. At the age of 40 I got horrendously sick for 8 months but no diagnosis here either. And now I'm 45 and the worst I've ever been and was just diagnosed with dysautonomia this past September. I'm wondering if perimenopause has anything to do with causing dysautonomia to really grab hold.
  23. Oh boy, it sure did!! I've had symptoms since I was a teenager, but it was nothing severe. And I had an 8 month long episode back in 2005 that was never diagnosed. But then on August 6th and completely out of the blue I fell apart. I had just taken a shower and was laying on my bed to catch the weather, after that I got up to comb my hair out and I had instant vertigo and nausea, mixed with loss of balance, and a terrible feeing in my head. It scared me so bad, hubby called for an ambulance, and while at the ER my blood pressure dropped to 70 over 40, and my body wouldn't stop shaking. I was diagnosed with dehyrdration and kept for 2 days. I was released feeling just as bad as when I went in. Two weeks later I was feeling even worse and went to see my family doctor, who completely blew me off and said I was completely fine and told me I need to eat better and exercise and sent me on my way. I continued to decline with new symptoms every day, until I found myself lying on my bathroom floor sobbing with bad nausea, tremors, dizzy, and weak and feeling hopeless. It was at that point I drove myself to a different hospital where they discovered I was having postural hypotension, and admitted me for 5 days and ran all kinds of tests. But still no diagnosis. A few weeks later my cardiologist ran a tilt table test and I was diagnosed with dysautonomia.
  24. No I don't normally sweat, even when it's 90 degrees. I'm not sure they would be hot flashes, because I've talked to other women about them, and they don't seem to have the nauseous wave or the graying out vision. They just describe it as an overall warm feeling that comes over them. They scare me everytime they happen, you would think I would get used to it happening, but they still get me everytime.
  25. I haven't experienced any sweating with it. Do hot flashes cause that wave of nausea and the vision graying out for a few seconds? I don't feel hot after it happens, its just a very strange feeling.
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