thejohnsongang Posted October 25, 2006 Report Share Posted October 25, 2006 I was recently diagonised with POTS/NMH in September of 2006. I am also currently being treated for Polycythemia Vera and Hemochromatosis. I joined this group to find support and understanding of my condition. Does anyone else have problems with Polycythemia or Hemochromatosis with their POTS/NMH?I have been searching for years to find the reason for my chronic fatigue. I was treated for years for depression with no results, treated for bipolar disorder with no results, had a partial hystercotomy (spelling?) and had my gallbladder and lump in my breast removed. I have continued to get worse and I finally got some answers from a wonderful cardiologist in VA that my PCP sent me to for tilt table test. I have started on medication and am feeling better, but the chronic fatigue is still there. I sleep 14-16 hours a day some days and then other days are good and I stay awake most of the day. Is this normal with Pots/NMH? My Dr said the fatigue will get better as my treatment progresses. I sure hope so. I look forward to talking, sharing and reading this post. Would love to hear from everyone. I live in MD outside of the Frederick area. Is there anyone close?Nolie Quote Link to comment Share on other sites More sharing options...
jenwclark Posted October 25, 2006 Report Share Posted October 25, 2006 Welcome. I also had chronic fatigue for many years before being diagnosed, and by the mid-90s I think I had tried every major class of anti-depressants on the market at the time. Interestingly, the SSRIs were the only ones that helped at all, and now I know that was probably treating the POTS, not depression.Good days and bad days are par for the course with these conditions. Sometimes you can tell what sets you off (stress, a cold, overdoing it), and sometimes it just seems completely random, and you can drive yourself nuts trying to make sense of it. You learn to roll with it. (At least, you try. )Hope you find some help here. And congratulations on finally getting a diagnosis.spike Quote Link to comment Share on other sites More sharing options...
Laura Posted October 26, 2006 Report Share Posted October 26, 2006 Oh boy, Nolie... no wonder you are so fatigued. To have hemochromatosis, Polycythemia vera, and Pots/NMH must make you completely exhausted. There are alot of people who suffer with very bad fatigue as a symptom of Pots/NMH, and to have your other conditions along side must be very tough. Hopefully your doctor is right and as you go along with treatment some of the fatigue will lift. You'll likely still have fatigue, but it will hopefully be more managable for you and to a much lesser degree. Hemochromatosis has just been found to run in our family so we are all in the process of getting tested. You'll find wonderful support here and caring people to help you out! Laura. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 26, 2006 Report Share Posted October 26, 2006 Welcome--I hope your treatment will help with your fatigue. I was also very weak and fatigued with POTS prior to treatment.What are Polycythemia and Hemochromatosis?I am also from MD, BTW.Glad you found us.Katherine Quote Link to comment Share on other sites More sharing options...
thejohnsongang Posted October 26, 2006 Author Report Share Posted October 26, 2006 Katherine,Where in MD are you? Polycythemia is a blood disorder/blood cancer (depending on the dr). This disorder is a mutation of the bone marrow that makes it overproduce certain cells. Mine overproduces red cells. I see a hemotatologist on regular basis and the only treatment at this time is phlebotomies. I have to give blood, about 1 pint, every couple of weeks/months depending on the time it takes my bone marrow to reproduce them. The greatest risk is from blood clot and stroke. This is due to the blood being thick from to many red cells. As long as we keep it in check I can live a regular length of time with it. Sometimes it can go into blast and over produce to rapid or can turn into leukemia or another type of blood cancer that woud require chemo or Bone marrow Transplant. I am no where near that point but it can happen, so it will be a lifelong learning curve.Hemochromatosis is another disorder of the blood that causes your body to overproduce/store iron that is in your red blood cells. Your major organs store the extra iron and it in turn damages the organs. Most people that are not diagonised or are caught late end up with liver damage, spleen damage, liver cancer, or Hep C. Mine was caught very early, when they found the polycythemia, and the treatment for it is the same. You have the excess red cells removes thru phlebs. They continue to do this weekly until your iron stores are at anemic levels, then they just maintain your low levels to keep the organs safe. You have to watch your diet for iron intake. I am the second person in my family with Hemochromatosis and the first with Polycythemia. The Factor V Leiden also runs in my family, but I was lucky enough not to get it. I am the baby of 6 kids and 3 of them got the Factor V. I am the first diagonised with POTS, but I truly believe my mother has it. Her cardio is not familar with POTS, so we are getting her PCP to send her to one that is. Hopefully she will find some releif from her symptoms..I have learned alot from this site as well as a list that my cardio gave me. It's nice to know finally that it's not in my head...I feel redeamed.My cardio is a member of the Children's Heart Clinic and I see a lot of kids in his office with POTS. He said this can run in famlies. I wonder how often that happens? Now this is one more thing I have to worry about handing down to my kids.Anyway, thanks for the welcome and I look forward to talking to you again. I hope the information above helps you understand a little more. Quote Link to comment Share on other sites More sharing options...
AJVDK Posted October 27, 2006 Report Share Posted October 27, 2006 Hello! I wanted to drop a line and say "Welcome" I am glad you found the site! I hope you will be able to find many answers and support here!Hang in there! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 27, 2006 Report Share Posted October 27, 2006 Nolie--thanks for the explanation. I am sorry you are faced with this as well as POTS. I live in Berlin--on the eastern shore--close to Ocean City.Katherine Quote Link to comment Share on other sites More sharing options...
thejohnsongang Posted October 27, 2006 Author Report Share Posted October 27, 2006 Thanks to all of you that have responed. Katherine...I love the eastern shore. Chrisfield is one of my favorite areas to see as well as Ocean City. We used to visit every summer, but will have to play it by ear for next year. This year was out. Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted October 27, 2006 Report Share Posted October 27, 2006 welcome to the forum. i used to stay in bethesda at the nnmc. now i just go back for appointments and such. i hope you find a lot of answers here!dionna Quote Link to comment Share on other sites More sharing options...
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