Jump to content

tobel17

Members
  • Posts

    13
  • Joined

  • Last visited

Everything posted by tobel17

  1. JJ, I took Pyridostygmine and got heavy migraines, blurred vision and the loss of the use of my tongue, but could not tolerate it long enough to develop weight loss. what dosage are you on, and what other symptoms, if any, are you experiencing? Laura
  2. I recently went to Stanford and was prescribed pyridostigmine, and another med. I tried the other med first, with no success and am anxious about trying the Pyridostigmine. What have the reactions been? I haven't been bruising as much, but truthfully I've not been getting out, its just too frustrating. I've tried so many medications that I almost don't feel like doing any more. Has anyone had good reactions with this med? The pharmacist warned me of salivation, which to be frank, of all the meds we go through seems like a laughable thing to be worried about.. anyone had it and what should I expect?
  3. I've been started on a regimen of Carvidelol (slowly working up to the minimum dose over 4 weeks) after seeing a doc at Stanford. Does anyone have any luck with this drug? It seems to make me restless at night, and I get dizzier during the day (I told her I was ok pushing through that -- but I'd really like to be able to walk in the mountains with my family this year) I guess we have to pick and choose our battles, and that none of these drugs will give us just relief. Any thoughts?
  4. Hi Jump, Sorry you've been having such a tough time with doctors. I have also found that doctors I have encountered either don't believe me, or are unwilling to try any medication. Beta Blockers, for me, were not very effective and it's taken a lot of coaxing to try to find new methods of treatment. I even had my old GP tell me, the week of my second heart ablation before I went in, that no no, it's ok, my Holter Monitor was fine. ...Needless to say, I too was frustrated. My reccomendation is to keep searching for a new doctor. Call local offices and find out if they accept your insurance, and when you go in, make sure that it's to meet the doctor. If your first "visit" for a new patient visit is in the exam room, that should be a red flag. The doctors that I have found that want to help me have taken me into their offices, and let me talk about any expectations I have, any specific medical concerns they need to know, a brief mental health inventory, and their own experience to let me know if they are qualified or not. This is critical. If you have been prescribed Beta Blockers (by an EP? Who prescribed them..) I would ask them to recommend a cardiologist, or a general practitioner that they are comfortable working with to help treat your POTS. I still haven't found a cardiologist to aid me in finding an effective treatment, but I have finally found a GP who respects my diagnosis and is capable of being compassionate to my needs. He was very surprised when I would come in for some other ailment, and he would inquire about my heart, check my bp/heart rate, etc, and say 'well this is on the high end of normal.." and i'd say "yeah, i took my midodrine today." Well, one day I went in without midodrine. He was very surprised! Be patient, and (believe me I know) it's hard, but you'll get there. If you can, ask family members to help advocate for you. It can be very tiring fighting for your position all the time. It makes you feel as if maybe you're crazy, that maybe they are right and you should just push harder to make up for how difficult it is. Don't give up. Keep fighting. There are wonderful doctors out there who can help you. Best of luck write if you want to talk, Laura
  5. I am at a loss. I have been bumped around by doctors for years, now, told conflicting things, that I have no health issues at all by one GP, been mis-scheduled for heart surgery during finals week (I rearranged all my finals and they forgot to write down my name for the surgery roster) ..and It's happened again. I decided to take a stand, and to make sure that my health was in my hands. But I guess that's never really the case. I did research, looking for a doctor out here on the left coast that would be a pots specialist, who could help me get down to the nitty gritty of whats going on in my body. I found, on potsplace, a reference to a doctor at Stanford who was highly recommended. I pushed my cardiologist to refer me, made a request after going over all possible treatment options I've found and him ticking them off one by one going "no.. no.. no..no..no..dont want to try these.. sorry.." I've been waiting six long months for this appointment, after they scheduled me (twice) without my consent (I couldnt just up and leave my 8.5 straight hours of school on the only day the doc was available for clinic without discussing it with instructors first, and the stanford people decided they'd just pick a time and date for me. Thank god I live here, and didnt spend money on plane tickets over and over) And so a week before my appointment I have a message. The doctor has decided not to come in to clinic that day, can I please reschedule. I've changed all my finals around. AGAIN. for a SECOND SEMESTER. and it has been decided that I don't get the appointment anymore. My anger isnt because I don't have a good treatment for my pots going, or that my cardiologist doesnt care, or even that they just chopped the whole clinic day off with no explanation (But all of those are true) It's that I get left in the dust, and no one cares about helping me get through this thing out here. No one. No one is willing to keep my appointment, or see me as a person and not just a bill. I feel abandoned. I want to abandon my own cause. I almost did. But I guess I can't. I want to. I dont want to care. I'm tired of caring. I'm so sick and tired of caring. So wish me luck, i've waited another three weeks, and I'll be going on the fifth. Atleast this time I don't have to drive the night before to get there. Best wishes to all of you guys, Laura
  6. Hi and welcome... I'm sorry it's been so hard, and I hope that you've found some solace in a diagnosis. I know that trying to keep going with a normal life is difficult, and trying to cope with everyone elses understanding is hard. But accepting your own hardship is the worst. For me, I knew something was wrong, but when everyone kept looking at me like I was crazy for being so fatigued, or when others would whisper or even say things to me directly It totally wiped out the confidence I had in myself to keep going. I thought, if they think of me this way, then how hard do I really want to try to keep pushing my niece on the swing, or go up and down the stairs with my nephew over and over because he loves them so much. Its good to hear you have good days, too. I'm sure that your little ones will come to understand that you're not just tired, and that you're helping them. Have you tried talking to them about it, in simple terms? Sometimes I find that telling my nephew that I'm not just tired, but that since I'm such an "old" aunt, that I need his help in keeping me going. He loves it! He loves to help encourage and be a part of keeping up the "play." Please feel free, any time you would like to talk, to do so. It is good to meet new people, and to share in this together. Best wishes, and I hope you have more good days ahead. Tobel
  7. Hey everyone, I just need to vent. I'm so darn tired of people looking at me funny when I go up the stairs to my college classes, because I'm out of breath. I'm tired of my dad telling me, 'everyones heart rate goes up when they do things.' I'm tired of medicines, and feeling like I'll never be able to do the things I want to. I'm tired of feeling like I just don't have the strength to push myself anymore, that I've lost hiking and horseback riding and all the fun things I used to enjoy because I just can't get myself to push through the dizziness and nausea and chest discomfort. The other day was the 1 year anniversary of my first EP study/Cardiac Ablation. I feel like its all been pointless, the ablation didn't fix anything, but it led me to the POTS diagnosis. I almost wish I'd never been diagnosed, atleast when I thought I was just out of shape/crazy I could convince myself that I should just try a little harder. I feel like I've given up on those things that used to be my passion, the outdoors. But I guess I really havent. I'm going to Stanford in a few weeks to get a better diagnosis. Wish me luck.. I'll need it. Thanks for listening Laura
  8. I go to school at the Santa Rosa Junior college and on a whim went to log on to dinet on a random computer in the library.. and to my surprise, someone was already logged in from earlier in the day on this computer! Small world. Computers are reset every night.. so I'm hoping this message will be found. I'm interested in meeting local people with POTS, just to get to know other people who have it. Please give me a message. L
  9. I was on Beta Blockers for a while before I was diagnosed with POTS, and they dont help. The problem, for me, is that I hanker pretty bad to jog, and hike and be active. I want to go on walks with my parents, and hike with my friends, or heck even not have to take the elevator would be nice. I think you guys are right -- it's time to get someone who knows what they're talking about. But I don't want to give up my dream of being active in the things I love. I'm unwilling to just give all that up.
  10. I'm in my early 20's, and doc said that thats the max it should get to for my age, but that its not life-threatening.. I don't know why the EP said to get the bp that high, but his idea was that my heart beats faster (its normal resting, but exercise it gets high within a couple steps of jogging) because its making up for blood to my head, so raising BP is a way to keep it from having to beat too hard when i stand up? I dont know. I dont think he really knows what he's talking about. I've tried Fludrocortisone, but I can't stomach it. My BP is pretty stable, i feel like. He hasnt done a tilt test (he had me lay on the table, do bp, sit up, bp, stand, bp) and said that i fit the bill for pots. He has told me that aside from a really dangerous neurotoxin that has had mixed results (which he is unwilling to try) that we've pretty much tried all the meds he can think of (all two i mentioned) and that he doesnt know what else to do. I don't believe him that thats all there is. Just the meds I saw listed on this site.. there's a ton of them! I feel torn because there are so many options, it seems, but that I don't trust him to make the right decisions. So i'm still putting out feelers for doctors.
  11. im not sure what my blood pressure does when i stand but im very aware of my heart rate which is my major complaint. usually its 50's-70s but if i stand it jumps to 90s 100s and exercise easily it gets to 190s. very frustrating. yesterday resting was 107/70. i guess its just that doc said to get the bp up to mid to high 130s and cap at about 140. i feel somewhat better going up stairs but still cant hike/walk on hills/or jog. thanks for the replies. my primary knows nothing of pots (i just switched from someone who kept telling me my heart rate was fine and that she had no idea why i was always tired but that unless i could think of a test to do, she wasnt going to look into it.) and my ep said that there are no specialists that he is the guy to talk to. ugh! do ther people get that a lot? no one here in california seems to know about it. the potsplace listed a group at stanford, so i guess i'll try to contact them. thanks flop
  12. I had a similar diagnosis. I was told it was a Sinus Arrhythmia, which is corresponding to the specific area of your heart where the Sinus node is. The sinus node is what controls your natural rhythm. You can look up more information on similar things by doing a search on Supra Ventricular Tachychardia. Often with SVT there is extra conductive tissue in the heart (it grows naturally) and so when you get stressed, or when the tissue is active (the conductive tissue sends out a pulse to make your heart beat, much like your sinus node) it will make your heart rate go up, because your normal heart tissue is responding to the request to beat. 165 is not a life-threatening speed, but I would talk to your Electrophysiologist about specific questions. I had two ablations done for extra electrical tissue. Cardiac Ablation is often done for SVT symptoms, and its an outpatient procedure. I had a catheter put up through the artery in my leg that goes up into the Sinus chamber of the heart (its on the right side of your body) and they used a platinum-tipped end to heat up the extra tissue. with the tissue scarred (its a very tiny tip) the electrical tissue can no longer put its message out to make the heart beat those extra times. Its an optional procedure. I would recommend talking with your doctor about what exactly your Holter monitor is telling them, and then do some research before deciding on any course of treatment. Good luck to you Laura
  13. Hi, I'm new to this whole POTs thing, and was diagnosed after two ablations to try to treat my arrhythmia. I've been on Midodrine for about six months now, started at 2.5 and now i'm up to 10 mg 3x a day, but my blood pressure never goes above 125 even though I get chills. It was about that high before i started taking the Mid. Am I supposed to be seeing results? I questioned my EP, and he said he didnt know why it doesnt go up, but didn't seem concerned. Is that normal? When I looked into information about the studies and trials they did with Midodrine it seemed like people had to be careful to get blood pressure up, but not let it go too high. Its been really frustrating having to give up the things I love because I can't do them. Its really nice to find people who have the same thing going on, because for the longest time I just thought oh if I just push a little harder, or try to work more at this maybe I can hike or go up the stairs, I must just not be fit enough. Does anyone have any suggestions? I'm feeling out of my element, and I don't think my doc knows much about POTS, but i'm not sure if there's just nothing that can be done or if he is unsure. Thanks, Tobel
×
×
  • Create New...