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janiedelite

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Everything posted by janiedelite

  1. Thanks. We haven't given up hope entirely, but we're trying to be thankful for what we have right now too in case my health keeps declining. We've been investigating our options as far as adoption or even fostering, but some days I can't even bathe or cook because of dysautonomia symptoms. We're praying for a good treatment regimen at Mayo in 2 weeks. I haven't really been to any dysautonomia expert yet. Thank you for your encouragement. Janie
  2. My mom has metastatic cancer and her Cobra just ran out. Her old health plan said she could not be insured under an individual policy. She has been on social security for several years, and is eligible for Medicare. She has opted to stay on her husband's employers insurance, but her other option is to get Medicare (she has the medicare that pays for inpatient hospitalization, but not the other plans). If she chose to be covered by Medicare, she is then eligible to purchase a Medicare supplement policy for a few hundred bucks a month from any other private insurer. They do NOT usually check for pre-existing conditions for these policies. At least my mom's old insurer said she could purchase the supplement plan without a problem. When she was approved for SSDI, she initially declined the more comprehensive medicare coverage because she wanted to keep her Cobra coverage. It's now several years later, and if she wants to add medicare coverage they have open enrollment only a certain time of the year (I think November to December). Just something to investigate and plan for if you are going to add medicare. When she was initially denied coverage by her old insurer they said she could apply for coverage under Oregon's high risk insurance pool. But I hear that you aren't guaranteed coverage that way either.
  3. When I first lower my arms or legs, they will turn a solid reddish blue. But if I leave them down for a minute or so, I get distinct patches of white mixed in and the white patches won't even blanche. I know I have problems with not just pooling but also vasoconstriction because I'm proned to raynaud's symptoms also. But I've read that mottled extremities are somewhat common in POTS I think. Janie
  4. So well said! I'm 35 and have only been married a couple years, but it looks like dysautonomia might be taking childbearing away from us. My symptoms keep worsening, and we don't know if my body could handle the stress of pregnancy. My husband was really depressed but came to the point where he said that I was more important to him than anything else. When I'm feeling my worse, I ask him what he still sees in me because it seems like I can give nothing back during those times. He says he'd still choose me anyway. We can't go camping or hiking anymore like we used to, but two nights ago I felt up to a shopping trip and he pushed me around the mall in my wheelchair. We went out to dinner too. I think time spent together is even sweeter now because we each appreciate how much the other person works to make it happen. My mom has metastatic cancer, and has an amazing, hopeful outlook. Yesterday she said that sickness doesn't have to rob us of our time, relationships, or hope. It doesn't matter if you are bedridden or housebound because if you are committed to making your little world a more cheerful place, often the people around you forget that you are sick. Keep hoping and trying. Janie
  5. Thanks for telling us your story! We are all somewhat different, but in a lot of ways the same also. Especially in regards to the emotional struggles with dysautonomia and dealing with this disabling illness. I haven't had a tilt table yet, but can they do the TTT without giving you meds? I laughed when you talked about previously being "long-winded." I am short of breath just talking on the phone! But this forum gives us a good outlet.
  6. Overall my BP is lower. It still goes up (160's/100's) if I'm up for too long, but it doesn't stay up like it did before. HR is higher now, of course, but that comes with POTS. I have an appt at Mayo's autonomic dept 1/28. Also, I don't know if I was just in a bad episode, but I can talk and do little things without my BP going up with the accompanying chest pain. Felt like I was dying and couldn't do anything about it. I really appreciate all your help!!! Janie
  7. Just wanted to let you all know my BP's are somewhat improved, but most important I don't have that crushing chest pain and headache like I did. I'm down to 0.05mg florinef every morning, and will hopefully be off it entirely by the end of the week . Thanks so much for all your advice!!!!!!! Janie
  8. I haven't had any family members with aneurysms, although my mom and her sister have terrible vericose veins and I had a vein on my neck blow once when I was carrying trays as a waitress. I have all the other symptoms Julie mentioned. I hope Mayo will consider testing me for this. Thanks for the advice.
  9. Female. 5'5". 140 lbs. 35 years old. First documented tachycardia (in the hospital) when I was 32 but I've had mild transient OI symptoms since adolescence.
  10. Me too. I'm very pale-skinned, but when I'm elevating my arms or legs my limbs will be very pale. When I put my hand above my head, my doc commented how pale my fingers and palms were. If I'm standing or have my arms lowered, you can see blue veins everywhere and they bulge, amd my skin will be a combination of mottled red or blue depending on how warm or cool I am.
  11. I haven't been diagnosed with MCAD but I having distinct flushing episodes with increase in burning skin, burning mouth, worsening pooling, and rapid onset diarrhea. I have all of these symptoms constantly (except for the diarrhea, usually the opposite), but I get a distinct increase in symptoms under any form of emotional or physical stress. My mom has Carcinoid Syndrome, which is another disorder associated with histamine release, but all the women in her family have had various histamine-related skin problems too. So I first started by recognizing when I was having an "episode" and I would immediately take a benadryl. It took about 2 hours for it to work for me, but it usually decreased my skin and mouth burning, and even the horrible fatigue, by about half. I've been taking Protonix for reflux and thought I might switch to an H-2 blocker like zantac 150mg twice a day., and I added 10mg zyrtec with a prn benaryl. I DID CALL MY PCP FIRST. She said I should be fine. I also had a routine appt with my rheumatologist who also touts himself as an allergist (I saw him originally because my docs thought the chronic frostbite I get was autoimmune-related). He said his patients with MCAD or mastocytosis get symptom relief on one zyrtec and an occasional benadryl! This doesn't jive with what I've heard about mast cell disorders, as I've read there are all type of other mast cell/immune inhibitors that are used for these diseases. My hubby and I decided that if I was diagnosed with a mast disease that we'd find another allergist. I had a skin biopsy last winter when a dermatologist diagnosed my chronic frostbite (I wasn't out playing in the snow , I wasn't getting proper circulation to my feet for 4 1/2 months for an unknown reason. I still get these symptoms when I get the slightest bit chilled. It's not Raynauds. My guess is it's the dysautonomia) I called the dermy and asked him to check my biopsy for mast cells. Unfortunately it wasn't stained with the recommended stain, but it came back normal. I have noticed a decrease in my constant feeling of burning skin (like a constant sunburn) and burning, metallic mouth since I've been on zyrtec and zantac. Just my two cents! And I still take benadryl when I notice an increase in my burning symptoms with noticeable relief. I do plan on being off all antihistamines when I'm at Mayo in a couple weeks.
  12. Dr. Bell's article: http://www.pediatricnetwork.org/medical/CF...ry/oi-intro.htm Jennifer, excellent article! I think Dr. Bell really explains the mechanisms behind OI in plain English. I forwarded it to all my relatives. Janie
  13. Yesterday morning my standing BP was 110/96 pulse 104. Pretty short of breath, chest pain, etc. When I wear my compression hose, my pulse pressure usually goes up to 30 points or more. I do think it is blood volume-related.
  14. Oh! I hope you can get this thing fixed soon! Thanks for keeping us updated. Janie
  15. I think each of us probably has different standing tolerance. I know mine can vary somewhat from day to day. I'm always dizzy, though, from the moment I sit. Today I was able to vacuum the floor (in one room) for the first time in over a month. If I stand too long, vision shakes, head pounds, get sharp chest pains, and can't take a deep breath. I have pretty bad pooling, though, I think. I can even see mottled skin on my side when I'm laying with that side down. Arms and legs are veiny and purple. I had my first episode of tachycardia over 2 years ago, but have only had disabling symptoms of OI for the last 7 months, and I seem to be getting worse every month. Compression hose have helped somewhat. The only thing that helps me is laying down with my legs up, dim light, not much noise. If I rest like this for a few days then I might be able to use a wheelchair and go on a short outing. I can sit for maybe 10 or 15 minutes with the compression hose that go up to my abdomen until I start feeling really wasted. Just my experience. I'm curious to hear what other people's experiences are because I'm so new with this! I don't really have a frame of reference! Janie
  16. I've been complaining to my docs that whenever I get stressed, too hot, or exercise, that I flush, have burning skin and a burning awful taste in my mouth, followed shortly by more pooling. So I started taking a benadryl whenever I noticed my symptoms get triggered and the burning skin and mouth taste went down by half! Since I've been taking zyrtec and zantac, I've noticed less skin pain and mouth symptoms somewhat. My pooling still seems to be getting worse every week, stress or no stress. Definitely a connection there!
  17. Thanks Pat57, but I'm not on any beta blockers. I'm going to just keep resting and wean off the florinef. Although my hands and wrists are often mottled with white patches surrounded by pink or blue skin. They turn colors whenever they're below my heart. My husband and I sing the "Star Spangled Banner" when I get out of the bath because my calves are blue, ankles are pink, and toes are white! I called the cardiologist's office again today with BP readings and florinef concerns. He left a message with his receptionist asking why I haven't gone to Mayo yet! I told her to let him know that my appt isn't for 3 weeks, that I need to be off the florinef by then, and that it would be nice to have his help dealing with the orthostatic hypertension if it hasn't resolved in 3 weeks so that I can travel safely. He's already admitted that he doesn't know what's really going on with my body, but he needs to know I need to get off this drug! Although, I think I'm already noticing a little improvement since I'm on half the dose of florinef. Thanks guys.
  18. Julie, I love the help! Bring it on! This dysautonomia thing is SO crazy. It seems one day I have too little blood volume and then the next day I've got too much! This website has been such a blessing. Kind of my oasis in the desert, so to speak. It's so great to read your posts and realize that someone out there can relate, especially after seeing so many "specialists," hoping for answers, then only to spend the appointment trying to convince them my symptoms are real or explaining dysautonomia to them. I think my husband is also glad that I've got an outlet, as he's been through the frustrations of this last year with me. He often asks if there are any interesting posts lately. He'll be taking me to Mayo and pushing me around. I'm on 0.1mg florinef twice a day. I cut it in half today, and will try to go off in a week or so. I was on 0.05mg twice a day til November, then my symptoms worsened so we upped the dose to 0.1mg. May 2009 bring everyone peace and joy! Janie
  19. I'm really thankful for my disabled parking tag. I don't care what people think... I have to save my energy! I usually just end up using my own wheelchair or holding onto my hubby until I can get into an electric cart at the store. Mine was free. I just have to have my PCP fill out the DMV form. My mom was going into a store when some guy stopped and yelled at her at the entrance about not looking sick (she has metastatic cancer), and he left and was too cowardly even to hear her reply. She told a store worker who was heard his comment that most days she doesn't even feel up to getting out of the house. Ignorant people - ugh!
  20. Well, I will need to be off the florinef prior to my autonomic testing at Mayo, so I might as well try to wean off now. Thanks!
  21. Wow! Thanks, guys, for your advice. I would be concerned about the florinef, except that if I had too much volume my BP laying down would be high. It's usually normal, and sometimes even on the lower side. MomtoGuilana, I agree that BP's aren't always accurate. I usually take my BP when I notice more chest pain and difficulty breathing, which has worsened lately. It's usually been high when I've been upright. My BP sitting at a dr's office last week was 168/88. When I try to slow my adrenaline by breathing deeper, just the excess work of the abdominals to take deep breaths makes the "adrenaline" feeling worse, raising my BP. Mack's Mom, I have been seriously researching the role of histamine in my symptoms. I do get flushing episodes, accompanied by more pooling, tachycardia, worsening burning skin and mouth, nausea, diarrhea, etc. My whole body turns pink sometimes. I've started taking zyrtec and zantac daily which helps the indigestion/heartburn, pink face, but I'm still easily set off by stress or exercise. I do take a benadryl right after I notice an episode coming on and it helps with the burning skin and mouth (I have read that excess histamine can cause burning skin and a painful mouth, as well as pooling, diarrhea, etc.). But my BP still shoots up and I still feel wiped out. My mom came down with carcinoid syndrome when she was my age, and my brother recently had a neurofibroma removed, so I really think there is a genetic component in my dysautonomia. Ramakentesh, I've been wondering if I have the hyperadrenergic type of POTS. When I mention my rising BP to my docs, they first don't believe me til they see the readings in their office, then they don't know what to do. I should have mentioned earlier that my pooling has been progressively worsening also. In June, it was only in my feet. In July, you could see mottling up my calves. In September, pooling was visible up to my groin and in my hands. In November, my arms would be mottled pink-purple up to my shoulders whenever they were dependent. Now, I can see and feel the pooling however I'm positioned (if I'm laying on my right side, my right flank will be pink and hot and mottled). So, in my case I am hypovolemic, even though I do have the actual blood volume. I think raising my arms returned some of the blood to my core which is why my chest pain eased for a bit. I tried midodrine but it made my feet dusky and cold on 2.5mg tid, like when I get the chilblains. Has anyone else had this kind of progression in their venous pooling??? I told my primary care doc, who is the only one who hasn't thrown in the towel, that I feel like I've turned into the human blob! Thanks Pat, that's a great idea about having my PCP contact the cardiologist. Today's standing BPs: 134/92, after 1 minute 140/102, 2 minutes 150/104, 3 minutes 160/106. Then laying down 163/93, after 1 minute 153/86, and will be normal in an hour or so as long as I don't move, talk, hear the phone ring...
  22. Wow! That's a crazy blood pressure! I'll take your advice regarding the flight. We already have a wheelchair requested at least! I stood and checked my BP with my arms raised and it was 112/71 (pulse 95)! I put them down and it was 138/97. Crazy! But I actually had some relief from the chest pain and tightness with my arms elevated. Thanks. Thanks again, Janie
  23. Thank you, Firewatcher and Carinara! Firewatcher, I do believe that blood volume plays a part. I used to just be able to salt load and drink this summer and keep the high BP, chest pain and pressure at ease. Then I began taking florinef and I felt even better. But then it seemed to "wear off" and the symptoms returned. So we increased the florinef and I began wearing compression hose. I felt really good for about a month and then it seemed to wear off again, and the high blood pressure, etc. came back. I wear the compression hose night and day now. My chest still hurts all the time, but when I take the hose off it feels like a stabbing pain and I can't even stand up straight. BP also spikes. So, yes, I definitely believe hypovolemia is triggering these adrenal responses. The problem is that the hypovolemia keeps getting worse no matter what interventions I take. I can't even get up to use the bathroom without my diastolic and systolic BP each going up 30 points. The longer I'm upright, the higher it goes! Even talking makes it go up now and I feel that stabbing chest pain. I haven't lost weight, although I believe that I consume way more than normal amount of calories considering that I'm practically bedridden and can't exercise at all. My weight has stayed the same for 2 years. Carinara, thank you for directing me to the other postings! I really enjoyed reading your post about your experience in the hospital. I totally understand that everyone's BP fluctuates regularly and I'm not terribly worried about stroke or heart disease yet because my BP does normalize overnight. It's just that it takes so little stimuli to cause my BP and chest pain to spike (like I wrote above, just talking or walking 10 feet to the bathroom) and it keeps rising until I lay down and then it takes at least an hour to return to normal range. I'm not even sure what meds I could be put on because my BP is low-normal when I've rested awhile. And I have this worsening headache and nausea after my BP shoots up that advil doesn't help very much. I just feel so miserable. I'm trying to just wait it out, though, til I go to Mayo because they'll want me off my meds anyway for the autonomic testing. I guess if I start having really scary symptoms I can go to the ER for short-term treatment.
  24. Hi everyone! I'm new to this forum, and would really appreciate any input you have. I was diagnosed with POTS/general dysautonomia this summer although I've had mild symptoms all my life. Because the fatigue, pain, BP problems have worsened so steadily and drastically over the past year, now my docs are suspecting that the POTS might be secondary to another "unknown" illness. I have an appt at Mayo Rochester at the autonomic clinic in 3 1/2 weeks. I've been having chest pain since this summer and have had EKG's, chest xrays, even wore a Holter monitor for a month a couple years ago for episodic tachycardia and chest pain, and no heart problems were seen. I've also noticed over the last couple years that my BP would easily jump up if I was stressed in any way. For the past month, my BP's laying down first thing in the morning are normal (120's/60's, pulse 50's). Then as soon as I do any activity, EVEN TALKING, it jumps up. This morning my first standing BP was 156/94 pulse 84. Last night my mom came over for a visit and after talking with her for 1/2 hour I noticed increasing chest pressure, pain, and tightness so that I was gasping for air. My BP was 170/100 standing, 168/96 laying down. 2 hours later it was 168/86 laying down and my chest was still painful. It seems to me like my sympathetic nervous system is constantly on hyperdrive! The only thing that brings it down somewhat is wearing compression hose (even at night), laying down constantly, not even answering the phone. And even then it takes hours or days to bring the BP back down. I called my primary care doc a couple weeks ago and she wanted to put me on a beta blocker but wanted me to talk with my EP cardiologist first (who originally diagnosed my POTS). The cardiologist hasn't returned my call in over a week. Should I keep bugging him for some help? I'm concerned because it's still several weeks til I get to Mayo and my BP keeps rising. I have to fly for 4-5 hours to get to Rochester too, and am concerned about flying safely if I can't lay down for several hours. Maybe I'm just making a mountain out of a molehill, though, and this is just another crazy POTS symptom and should I just keep taking pain meds to make the chest pain bearable and do what I have to do??? I've read that some of you guys have high BP also and how do you treat it? When do you treat it? Thanks so much for any help! Janie
  25. Oh, I'm so sorry!!! I was hit in a car accident (lady drove through a stop sign into the side of our car), and I had hip pain afterwards. 1 and 1/2 years after the accident a surgeon found a ruptured ligament that was missed during the first surgery and MRI's. In the meantime, I'd lost my nursing job because I was in so much pain I could hardly stand or walk. It still took over 9 months of physical therapy after the second surgery to reduce the pain enough so that I didn't have to use a cane. It still hurts to some degree all the time. What can be done for you now? I'm so glad your new ENT is finally getting you the treatment you need. Will you need surgery? It sounds like a big deal to try to fix with now because of all the overgrown muscle, cartilage, etc. I so enjoy reading your posts. Your humor in spite of your illness has inspired me to hope and dream in spite of my dysautonomia. I really hope that you can get some pain relief and get this fixed!
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