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About Alizee

  • Birthday 03/11/1978

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    Christianity<br />Bible Studies<br />Video games<br />PC games<br />Music (French pop at the moment)<br />Sims 2 modding<br />Costume Jewelry<br />Discovery Health Channel<br />TruTv<br />Little House on the Prairie<br />Golden Girls<br />Unicorns/Griffins/Mermaids (anything mythological)<br />Mr. Bean<br />Sleeping<br />Dark Chocolate<br />Dan Active Drinks<br />Laughing<br />Huggies<br />My fur-baby Gizmo!

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  1. Yes, I have gotten weak legs to the point where they have given out on me and I use to teach aerobics for many years! I am not sure why I would get it either. I can happily say I haven't gotten it in a long time. I remember though sometimes my legs and arms would feel like they were burning, like a lactic acid overdose, that's what it felt like in my muscles, but my rheumy told me it was due to my fibromyalgia. Interesting that you bring that up and I'm sorry you have to deal with that it's scary when your legs give out when you're trying to walk. It's like you're telling your legs to move but they won't listen Hey villen, What type of POTS do you have? Awesome link by the way pat57 :^)
  2. Yes my Grandmother and Aunt insisted it would work miracles on me, and this was years ago. I took every morning for 3 months, liked the taste but I didn't noticed any improvement other than a sugar rush followed by a crash probably resulting from my hypoglycemia problem
  3. You know I don't have anything really great to say other than this topic has made me feel less guilty Hugs to everyone here <3
  4. Hey cardiactec, So sorry you need surgery! I had to have a hysterectomy last February due to severe endometriosis. Make sure you tell the anesthesiologist that you have POTS (and if they should get that puzzled look on their face that tells you they have no clue explain it to them and make them aware). My neurologist told me to have them call him if they had any questions but I knew that would be near impossible to get a hold of him on the day of surgery. Also another tip I learned last year if the nurse keeps messing up on inserting your IV, you can ask he/she to numb the top of your hand or arm to ease the pain of being a pin cushion :^) I was severely dehydrated because you couldn't drink anything 12 hours before so my veins were very hard to find. Also in case the anesthesia makes you nauseous, there is a pill you can take before they wheel you in that will help with nauseas when you wake up. Any ways sorry you have to have this done. I definitely love having no more periods, heavy bleeding and horrid cramps!!! Hope it goes well. Hugs
  5. Thank you for the encouragement. When you were talking about your visit, I had SEVERAL flashbacks to doc visits that went the EXACT same way and I had the EXACT same feeling. I have to just keep telling myself I'm NOT CRAZY and there IS something wrong! you were exactly right when you said some doctors have an ego problem. In Dr. Grubb's book, it talks about how docs MUST be humble and willing to throw everything out the window and start over when dealing with POTS (in so many words). Anyway thanks again. Hey kansasgirl8605, No problem, I am glad my re account of my recent bad experience helped. I have to check out that book by Dr. Grubb Hugs to ya Hey Tammy, I totally understand, even though I wish we didn't have to suffer it's good to know we're not alone and we're certainly not crazy Hugs to ya
  6. Hey kansasgirl8605, I am so sorry that you had a breakdown! I wish I could of been there to give ya a hug. But your post made me feel not so alone. I had a breakdown, a couple of weeks ago...only embarrassingly, for the first time ever it took place in front of someone and it happened to be a Doctor, who thought I was mental! He started asking me a lot of questions he looked through his laptop skimming for answers to DX me in a matter of minutes. He first said maybe my combined medications were the cause of all my problems, I thought maybe that's possible I was hearing him out. Then he wanted to do an examination of me. After that he looks at me funny and then he went back onto his laptop and said maybe it's psychological. He says my symptoms mimic panic attacks. I said I don't have panic attacks I have HPOTS. How could panic attacks cause me to have severe endometriosis, cause my thyroid to die, cause me to be chronically dizzy, cause hypertension, cause my face to turn half red and my toenails blue all in a matter of years when I was in prime condition before this and taught aerobics everyday got an awesome job, got married, bought a house and living a great life? Then he said you're probably depressed and you just don't realize it. I was like what!? He said I have a rare depression that even when you're sleeping it will make your heart race. Then he concluded I must have mass depression! I could feel the tears well up in my eyes but I was determined to remain unaffected, calmly make my way out of the office never to see him again. Instead I started to get angry, snot and tears started coming down my face, I said "I'm not crazy, I'm sick, but I guess I'm just really depressed because after all I'm crying right now and I must be enjoying this because I want attention!" Then I apologized and said I'm sorry, and this is embarrassing. His receptionist wanted to get me and my Mom out of there so I wouldn't "cause a stir". Silly thing was, I did feel depressed after going to him! Anyways a week later I had another Doc appointment, I was preparing for the worst. But the Doctor actually listened to me and told me I wasn't crazy and that many Docs have ego problems and don't like patients that they can't cure. He says it eats at them and a lot of times they get tired of dealing with that patient and hope to pass them to someone else or hope they just go aways. He actually did some tests which were for cortisol levels. So my hope for Doctors went back up. I know you're not suppose to let people control how you feel but it's sometimes. Dealing with a chronic illness makes you feel so alone at many times. It's true there could be worse things we'd have to deal with but when it comes down to it, the cross you or I have to bear doesn't intensify less when you're going through that exact moment. Anyways about taking new medicine, my personal opinion is don't take it, if your body is reacting to it badly. Might be the wrong thing to do, because corina stuck with it and it worked for her. For me personally, I rather be safe. If you look at the tiny print on the medication sometimes there can be side effects that never go away even after you stop taking the medication. Sometimes it's like the lesser of two evils, like will I be in pain or live with weird tingling sensations but have no pain. Glad to hear the water exercises are going well, let me know how it effects you in the long run. Hugs
  7. Also I overheat even in the dead of winter I could be outside with no jacket on and I still overheat. I wear summer nightgowns all year round if anything when I go to bed
  8. I am sorry if I've missed anything in your post as I'm going through a bad flare right now and it's hard for me to think straight but yes for the last year I've been having horrible intolarence to heat. My room, right now my AC is going, I must have it at least 60 degrees or i get sick. My face will start to get flushed starts with my nose and then spreads to my hands. It looks and feels like a fever, I only get 2-4 hours of sleep a night due to my body being hot but my feet could be ice cold and start to hurt, I'd rather have the ice cold painful feet than the flushing problems that never go away and then with that can come with nausea, tremors and of course insomnia. i recently say a new doc last week and I asked him is there anything he can do to get rid of the temperature problems he said not really but they would test my cortisol levels so right now i'm waiting on that test. I can't say I've ever had a drug overdose or done recreational drugs but I traced back through my medical records back from 2001 and during that time I kept getting sick like every month which was unusual for me, I'd always been healthy before then. Anyways my family Doc put me on some strong antibiotic for months that I thought read somewhere on the net that it can potentially cause autonomic damage. Anyways I feel for you, it's so horrible having your body too hot. Hugs
  9. So sorry you are going through this, "eat pickles, um sure". That Doc definitely was not helpful in the least! I wish I could write more on here but i'm going through a major flare lately, hard for me to think but know I will keep you in my prayers and that we believe you are not crazy! Sending love, hugs and prayers to ya
  10. Hey Casper, I am so sorry you are feeling so blue. You know POTS and other chronic illnesses that cripple the body are like a living death. Your body feels like it's shutting down but it somehow keeps on going. The majority of people don't believe you, Doctors might not believe you and your own family might not believe you're even sick, but there is someone who does. Not to preach at you either because I know that's highly annoying. Personally for me the only way I can deal with my chronic illnesses is knowing that there is a creator of the universe who loves me beyond comprehension, He has a plan for me. Just as He has a plan for you. Your life is very precious! I believe in Jesus Christ, referred to as Christianity but it's not a religion it's a relationship. Don't stop fighting that darkness you feel, I know it well and where it comes from. Feel free to PM me, if I don't respond right away I'm most likely in a bad flare You're in my prayers, Alizee
  11. Hey Radha, Maybe it's just one of those crappy things that comes with hyperadrengic POTS? I have hyperadrengic POTS as well and get flushing a lot, real warm and then sometimes nauseous but not as much nauseous like last year. I actually never vomited either from my weird nauseous moments. I only experienced it after my surgery, it was due to not being able to eat for a day in prep for the surgery that triggered my non stop vomiting for a couple of hours. One of the nurses kept trying different anti-nauseous medicine to stop it but finally zofran did the trick and then I used that in later months to ease my nauseous attacks. Rachel has excellent advice. The only other thing I can think of is, maybe you should get your gallbladder tested. I can only say I understand and I am so sorry you have these nauseous attacks.
  12. Thanks for letting me know kansasgirl8605, I am sorry too that you have to suffer with this. It is so horrible, I dread the spring and summer because it's hard to escape the heat. I am the same way with the blanket I can't really fall asleep unless I have it over me I flip them off then the fan makes me cold on some parts of my body and then I flip them back on to get warm but then I get hot in different parts it's a weird feeling definitely enough to drive ya crazy!
  13. Hey kansasgirl8605, No problem, let me know how the swimming exercises go and do make sure you bring your Mom or hubby with you too. Sheesh it is weird how so many people get POTS that were previously very athletic! I even thought at one time maybe that had something to do with it? but all the Docs I've seen say there are no possible connections. Thanks Rachel and MomtoGiuliana for all these other exercise tips, I need to try them
  14. Hey kansasgirl8605, I feel for ya!!! I want to exercise so badly but I get so weak easily and my legs eventually give out and I have balance/dizzy issues and this is coming from an Aerobics instructor over 7 years. I was fit as fit could be, I taught around 10 classes a week during college and now I can hardly make my bed without getting weak and lightheaded. My heart doesn't race as much now on toporal XL but I feel, as I said before extremely fatigued. Before I was diagnosed with POTS I went to a dizziness rehabilitation center recommended to me by my ENT. The people there said they didn't know if they could help me but they'd try. I went there for many months and tried my best but the exercise therapy just made all my symptoms worse. I was starting to use all my leave at work and had to stop going because I was so much more dizzier. I am in the same spot as you, I really want to start doing some strength training for my muscles but just about everyday I struggle to keep my stamina going, it's like do you want to make your bed or make a meal I can't do both. I use to teach regular Cardio/Strength training Aerobic classes as well as Senior citizen aerobic and strength training classes. There was a routine I'd do called sit and be fit for Senior citizens, I learned it from the Sit and be Fit series I guess it was on TV? Anyways I saw it on youtube if you want the link just let me know.
  15. Hi lina, YES!! most definitely, I get flushing usually starting from my nose and then sometimes my whole face, half of my face then usually it branches out to my arms and hands and it's so annoying it feels like my skin is burning from the inside out. I actually can't get to sleep because of it. I never use to have it in my hands before but since October my hands have decided to become annoying, they burn and turn blood red and they also get puffy too, the skin feels tight as well. It's weird because as a child I always had problems with my feet being hot sometimes during the day and usually at night. In my early 20's my Doc told me it probably was Reynalds syndrome. But I guess it's really from the POTS? Anyways anyone here suffer terrible insomnia from it? Any relief other than ice-bags, sleeping with arms over your head, AC and fans that help?
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