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Everything posted by Stace915

  1. I just did a search for yeast infections and this old thread came up.. so I never had a yeast infection in my life, until about 2-3 months ago. I called my gyn because I had severe itching down there... but no other symptoms. She told me over the phone that it was a yeast infection and recommended an over the counter med. I bought what she told me, had a miserable week but it cleared up after that... She mentioned a lot of women get them right before their periods due to hormone changes etc. Well... lucky me, now a few months later, I have that wonderful itching again. I didn't bother to call the gyn again, we haven't changed laundry detergents or anything so I just assumed it was the beginning of another infection and I ran out earlier and got monistat. Of course I read the box where it says frequent yeast infections can mean you have HIV or a compromised immune system... gotta love the warnings on different products. So now I am wondering, although I don't have an autoimmune deficiency, does POTS on its own compromise our immune system? I know sometimes if there is a stomach virus going around my office I don't get the stomach virus but instead I get a major POTS flare up so I have always just assumed that I am more susceptible to catching things... but I just thought it was weird that I went 29 years with 0 yeast infections and now within a matter of months I am now on my second one. Ug... not fun!! I figured I will discuss it with my gyn on my next visit, but everyone on here always seems to be more knowledgeable than most of my doctors anyways!
  2. Hello everyone, If you haven't had a chance to check it out yet please be aware that the Spring newsletter is now posted for your reading pleasure!! In case you don't know the newsletters can be found by going to the DINET home page, there is a link to "Newsletters" in the column on the left and I am also including a link: http://dinet.org/newsletter.htm ...the newsletters are published quarterly. The next one will be the Summer edition and will be published around August. Please take some time and read each edition, they are always full of new information regarding POTS and some great stories etc from our members and please remember DINET runs on support from volunteers! Happy reading smile.gif
  3. Hi there, I just sent you a private message about this
  4. I also like trader joes green tea, I get the regular one, I don't know how much caffeine is in there but I don't feel any effects when I drink it. Personally I do one tea bag and one sweet and lo...and its good cold too! Lipton also makes a good green tea, it is green tea with honey lemon and that doesn't need any sugar or sweetener it is good on its own (my bf who doesn't like tea actually likes that one!)
  5. I am not exactly how to describe it but before I faint or when I have a bad episode and I am able to prevent fainting my ears don't buzz, everything around me just started to sound garbled, almost like in the snoopy cartoon, like womp, womp, womp... I can still hear but it sounds like this weird language that I can't quiet understand...almost like slow motion mumble. I also get REALLY hot, I mean I all of the sudden start sweating profusely and my vision blurs, my hands and sometimes the lower half of my face get numb/tingly oh and this is a weird one but I start to yawn like crazy out of no where. The whole thing is such an awful feeling and scary, no matter how many times I go through it I hate feeling so out of control of my own body. The first time I fainted I was 12, and my mom was standing next to me, I grabbed onto her arm because I was so terrified, I had no idea what was happening and I honestly thought I was dying. 17 years later it is a much much more common occurrence for me to deal with these episodes but still scary even though I know what is happening.
  6. That is really bizarre, but let me throw a wrench in this theory... although I oddly enough now live in Ohio... I was born in MA, grew up in NJ, moved to NY which is when I was diagnosed and got sick... and a few years later I moved to OH... I am going on 4 years here (wow, time goes quickly). Although living in Ohio has not helped my health in anyway, it has not made me any worse either. Its so funny though, as an East Coaster and a New Yorker especially I had never in my life been to the midwest, as a matter of fact (and yes I know I was very very naive and stupid), I just always assumed Ohio and all of the surrounding states were all farm land and a bunch of hicks (again I apologize for my ignorance!!!), Ohio was what I always considered a fly over state, meaning why would anyone come here, but you had to fly over it en route to other places lol... I can now say I am a happy resident of Columbus, and everyone from the East Coast who visits me is shocked to see that I actually live in a city and loves it here. Sorry I went off on a bit of a tangent! But I will say I have found the low humidity in California seems to play a big part in how I feel day-to-day, we are going there again for vacation in a few weeks and this time I am going to keep a detailed journal of my symptoms...and who knows maybe at some point will move there.
  7. Hmm... I am another one with POTS and EDS and now I am wondering, all my doctors including the wonder Dr. Grubb, have always just told me POTS, they haven't told me a specific type. Is finding out more specific information in anyway helpful for treatment, as far as different drug therapies are suggested for different strains of POTS?
  8. I have 2 episodes of House saved on my dvr that I have not watched yet... now I know what I am doing as soon as I get home tonight (that is as long as I don't fall asleep as soon as I have a chance to sit down... I am known for evening naps on the couch!).. but I am excited to watch this episode now!! Thanks for sharing this
  9. Wow, this is awesome! I keep track of some of this stuff and keep it in a little notebook that I always have in my bag but this is so much more detailed and organized. I am at work so I don't have time to register and all that good stuff but I am excited to sign up for it tonight (and I am sure my doctors will be super dooper excited when I hand them a print out at my next appointments!)
  10. If you are still looking for a doctor in NY, I recommend Dr. Marc Pecker. He is at Columbia Presbyterian... next to Dr. Grubb he is the most knowledgeable doctor that I have seen regarding POTS. I either found him through DINET or through the NRDF, if you go a search for him he should come up.
  11. Sue thanks for posting that picture. My "dots" don't look like that and there are only a few. I guess I will go back to not worrying about them again (until another doctor notices). I feel like every symptom that I ever have seems to get blamed on POTS and the dysfunction of my autonomic nervous system... so again I will chalk the red dots up to POTS!
  12. I have red dots, they almost look like a tiny red spot of blood... they are really small and are only on my chest. There are not many of them, maybe 10 and they are spread out but I have noticed lately that a few more popped up. The only doctor who has ever mentioned them was the geneticist who thought they were a sign of Fabray Disease, after months of extensive and expensive testing I am negative for Fabray. He never mentioned the dots again, and they don't bother me so I never thought about them again until I read this post... Can anyone give more info about what the scurvy dots look like, I googled it but didn't find anything. I take 500 mg of vitamin C a day to help reduce the severe bruising in my legs from EDS.
  13. What is an implantable loop recorder? Is it anything like a pace maker... I am wondering if it is something I should ask my doctors about!
  14. I am at work and in a rush but a few weeks ago I had a very similar scenario happen to me, my doctors response surprised me so I will be back later to fill you in! Feel good!!!
  15. Without going into the crazy details of the strange thoughts I have been having lately (my bf turns 30 this week, which has me thinking about turning 30 in September... I am pretty sure I am having a minor mid-life, or early-life crisis of some sort!), I just wanted to give everyone a pat on the back for WHATEVER they have accomplished today. No I haven't lost my mind, but I was just thinking, today I got up, I took a shower, did my hair, drove myself to work, even walked the dog alone... now I am at work. I feel like ****, my body aches, I am lightheaded, dizzy, fatigued, my head hurts and I am trying so hard to push through it and make it through the rest of the work day and not leave early. And you know what, me taking a shower this morning (with my shower seat and all) took so much more energy than anyone in my day-to-day life realizes. Most people don't have to struggle to blow dry their hair, and lay on the floor while they do it because the heat makes their bodies sick. Most people are not sitting at their desks in severe pain and not saying a word and trying their absolute bests to make it one more hour... We are all (un)lucky enough to be living with this illness, and although I think everyone on here has very different symptoms, cases etc. and some of us are more disabled then others, this dumb illness effects everyone in some way and makes life that much harder. I couldn't help but think this morning, wow just making it to work was so much work and took so much physical and emotional strength... so, um... why doesn't anyone say thank you? No, I am not saying that I want special treatment because of my illness, but I guess some sort of appreciation for what I go through. In the real world, no one thanks you for coming to work, because that is what you are supposed to do. Wake up, go to work etc, etc., but most people have no idea that while they have woken up and gone through their day to day motions and coming to work is just part of a routine for them and don't give it any thought that by the time I get to work my body has already worked so hard and done so much. Not many people at my job know about my illness, but my boss and close co-workers are aware and I guess I just feel like it would be nice for someone to say, hey I know how much you go through on a daily basis and how hard it is for you and I just wanted to say great job that you got out of bed today! And great job for driving yourself and not get getting a ride today, and not staying in bed! My point in all of this rambling is, that whatever you have accomplished today...no matter how big or little..even if your biggest accomplishment was feeling well enough to sit up in bed instead of laying down, I wanted to say that I know how difficult it is to do anything when you are fighting your body and feeling like death with this illness, and I wanted to say to everyone that it is great and awesome that you were strong enough to do it and that I feel like everyone needs and deserves a pat on the back sometimes to keep going.
  16. LOL... I got the email and I read it to a co-worker and said there is no way this is real, I forgot about it until I just saw your post but I am glad you got it straightened out!
  17. Hello everyone, For those of you that have not had a chance to check out our most recent newsletter, please note that the Winter DINET newsletter is now available online for your reading pleasure!!! Please go to the DINET main page and to the newsletter column on the left and it is the first one listed or go to this link: http://www.dinet.org/newsletter.htm Thank you and enjoy!!!!
  18. This has been happening to me lately. I will be up for 2-3 days at a time and I am SOOOO tired! I lay in bed but nothing... it is so frustrating, then I ended up with a day where all I can do is sleep. My sleep schedule is beyond screwed up... If you need someone to talk to in the middle of the night, I am usually up!
  19. This will probably make everyone in the UK laugh, but what is a "twiglet"? The name made me giggle and made me really curious!!
  20. Julie, That is really interesting, makes me think I am really weird lol! I can not handle coffee it makes me feel worse, unless all I drink is a half cup and drink it slowly (I am talking about over the course of a few hours) but I do not get that way from the adderall or midrodrine. I guess I never thought about the fact that I can't tolerate caffeine but tolerate the meds... weird! I guess I should know better than to question anything that has to do with POTS!!
  21. Oopps, I forgot to mention. I take the adderall in the AM and then when I feel like it is starting to wear off, which is generally around 1pm depending what time I take it, I start to take midrodrine 10 mg and continue that every 3 hours for the rest of the day.
  22. Hi there, I take adderall xr (extended release) 10 mg every morning. I was a little hesitant when the doctor mentioned it but it was Dr.Grubb who put me on it and I figured he knew what he was talking about! I have been on Midrodrine from probably 4-5 years now and I take that every 3 hours. He explained the adderall and the other meds in the same family are the same basic composition as midrodrine but the adderall has an added stimulant. I can not start my day without it, I have probably been taking it for about a year now and it does make a big difference for me. I wouldn't say it helps with the dizziness or brain fog, I really get the most relief from fatigue from it and it helps to keep my VERY low BP elevated. From what I was told Concerta is very difficult to get insurance companies to cover. Grubb said I needed to try adderall first, if for some reason that was not helping then I needed to try something else (can't remember the name), and finally if that still didn't help then we would try Concerta but that we had to prove to the insurance company that we tried the other options first. Maybe since it is for a child you will have any easier time getting it paid for? Is your son taking cerfolin nac? If not that is something I would highly recommend for brain fog. It is a prescription strength of some sort of folate vitamin. It is generally used to help treat Alzheimers and dementia patients. I started that around the time that I started the adderall and the combination of the 2 have made a significant improvement in my day to day life. I still feel like **** a lot of the time but I am a lot better off than I was, I am able to focus better, and the biggest change I have noticed with the cerfolin is that before it I spoke backwards all the time, for example if I wanted to say "Can you look in the cabinet for cereal", it would usually come out "Can you look in the cereal for cabinet"... lol... I don't say things like that or find myself searching for words nearly as much!
  23. I just wanted to let everyone know that Alexia, "worththewords" gave birth this morning! Mommy and baby are both doing well, I am sure she will not be online for a few days but I was so excited and happy for her and her husband that I asked if I could share the wonderful news with everyone here. The baby is beautiful and healthy, and from the photo it looks like she has a full head of hair! Congrats Alexia!!!
  24. I am sooo jealous of you POTSies that are able to exercise! I tried swimming after my doctor recommended it, I did great in the water but after swimming for 20 minutes I had to sit down for at least an hour after I got out of the pool before I was able to stand... I decided it wasn't worth it. I was going to get a recumbent bike but I tried it in the store and could not even handle biking for one minute...I have also tried a beginner Pilates DVD and again had no luck. It *****, I was never very athletic in my past healthy life but I did jog and go to the gym and I miss that so so so much. I know that in a way I am lucky that after 5 years of doing zero exercise that I have not gained a ton of weight but between all of meds and being so sedentary I have gained about 20 pounds (I think getting older has played a part too), I just feel really mushy! I would love to just be able to be more toned and lose a few pounds. Sorry I just needed to whine for a second, I pledge that if I ever get healthy enough I am going to be an exercise feign!
  25. That seems logical, it scared me the first time but now I know it wears off so I try to not freak out and like you said I have started to say oh it must be from POTS, everything I ever mention to the doctor they tel me it is part of the autonomic nervous system yadda yadda so I guess I have just started to assume that any new symptoms are also just part of the autonomic dysfunction!
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