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franziska

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  1. i feel like this too! it's super new for me and really confusing. it's almost as if my body has replaced hunger pangs with dizziness/lightheadedness. from what I've read on this thread, I guess its low blood sugar? anyone willing to comment on if this is something that is super important to get checked out by my dr? or can i just get by eating a snack and not worrying?
  2. Hi! How do you personally decide when your meds just aren't living up to your expectations and that it's time to make yet another dr appointment to discuss changing meds/doses? I've been on midodrine for almost a year now and still dont feel great. I get confused because: what is "great"? what is normal? I've been living with pots since puberty and honestly can't remember what 'normal' feels like. My biggest and most problematic symptom is shortness of breath when standing. I still feel like I can't breathe when I stand. My meds have been upped from 2.5mg 3xday to 10mg 3xday. Today at school I could barely work (I go to school for woodworking, was using chisels today, almost all work is done standing at a workbench) because my heart rate was so high. Clearly the midodrine hasn't cured me of my symptoms. But am I just expecting too much? How do you decide when to talk to your dr and bring up the fact that maybe the meds you are on aren't working? I have a whole other host of symptoms still plaguing me, even though I've been on midodrine and florinef for a while. Thanks for any responses.
  3. not sure if anyone will see this but, I got a call from mayo clinic today. they scheduled me to see the same cardiologist I saw when I was there last, calling the visit a 'cardiology consultation' (where they do all the tests and whatnot), which I've already done. One scheduler asked me if I was trying to go to the "POTS clinic" and the other scheduler I talked to said they dont have a pots clinic anymore. very confusing. guess I will have to follow up monday to see whats going on. thanks for all the input and answers.
  4. Thanks for the responses everyone! I haven't been accepted yet--still waiting on the call either tomorrow or Wednesday. Thanks for the reality check natops. Didn't realize that it is actually a little hard to get accepted by Mayo. I hope I get in!
  5. Hello! I am very excited to say that I just got my referral for the autonomia specialty group at Mayo. If you've been before, can you answer some questions for me? How much say did you have in the scheduling of your visit? >I'm in school right now and it is a very difficult program that makes it hard for me to miss even 1 day. Were you able to schedule your visit for a time that works for you? I understand that these visits take up to a week so that's why I ask. How many hours a day were you 'on campus' at Mayo? >I've been before and understand how the campus is laid out. I live about an hour away (I'm very lucky!!) but will be too tired to drive myself home if I'm there 8 hours a day. Do I need a hotel? So relieved y'all understand this and won't think I'm exaggerating Do you think it's absolutely necessary to have someone with me? Did you have a friend/sibling/parent/spouse with you? Could you have done it without someone? any other tips are welcome. I've been to mayo before for the cardiology panel of tests (ekg, echo, mri, chest xray) so I'm familiar with the itinerary and what not, but anything else would be helpful!!
  6. Hello all! I was reviewing some lab results I got back today and noticed by AGAP (anion gap) levels were low. The dr (not my normal dr; just saw me in urgent care) who ordered the tests didn't call to say anything about it, but I noticed that all my past blood work shows low AGAP. The normal range listed is 10mmol/L-20mmol/L. My result has been was 7mmol/L. The only info I could find on the internet was that high AGAP is a concern for people who are diabetic. If its any help, my c02 was also high, but only by 1 unit (forget what unit of measurement is used there..) I like to do a teeny bit of research before going in and suggesting my dr "missed" something. However, she does not really have much knowledge on the ins and outs of POTS and I have pointed stuff out to her regularly and/or made connections for her ( ex: pain in legs => just started taking florinef=>low potassium) Does anyone have any insight on this or know where to find reliable info? Also: does this warrant me pointing it out to her? Should I just trust that if my doc hasn't mentioned anything, it's okay? i am a pots newbie, clearly
  7. I started taking a salt supplement (of course, after I ran it by my dr), which is basically salt in a capsule. There are a few other electrolytes in it too, potassium etc, which is similar to the salts you find in gatorade. The brand I use is called saltstick, but I've also heard of thermotabs. Theyre usually used by endurance athletes; you might be able to find them in a GNC or vitamin shoppe. I just bought mine on amazon.
  8. Not sure if this has been mentioned, but it is highly recommended to wear a medical bracelet when taking a steroid on a daily basis! (I saw in your signature that you take florinef) from: http://www.drugs.com/mtm/fludrocortisone.html Carry an ID card or wear a medical alert bracelet stating that you are taking a steroid, in case of emergency. Pretty sure this is due to the fact that steroids make your body more vulnerable to physical stress. If you were to faint, for example, it's important for emergency folks to know. The computer med bracelets seem cool, but honestly it seems quicker to look at a wallet card! I feel SO much better wearing my bracelet. It's a great peace of mind comfort kind of thing for me.
  9. Mayo has an amazing wealth of knowledge on POTS, and most doctors, even the ones who aren't POTS specialists are way more well-versed in POTS than other doctors. "Do your research" is excellent advice. Calling the patient services is going to be your best bet, since it seems that there has been a recent change in how the clinic operates. They are so super nice and knowledgeable on the phone and will give you all the information you need. You are looking for the Autonomic Neurology Sub-specialty group > http://www.mayoclinic.org/departments-centers/neurology/overview/specialty-groups/autonomic-neurology I would ask about a consultation, also inquiring on what steps need to be done to be taken as a patient. Be sure to call up your insurance company and figure out if this kind of visit is covered (most cover it, if you get a pcp referral.) When I went to mayo, I was there for 1 full day (8 hours) of testing, coming back the next day for the consultation. I was seen at the heart rhythms clinic (not the Autonomic Neuro Dept). Mayo works out a whole days of testing for you, scheduling each test into a custom itinerary that gets mailed to you. I had blood work, an EKG, an echocardiogram, and a chest x-ray done. My consultation, done on a separate day, was a full hour long in which I saw one-on-one with a Dr who outlined POTS for me and gave me some treatment suggestions, as well as prescribed me florinef and midodrine. In my opinion, Mayo is WAY more holistic than any other clinic I've been to for POTS. I was given a wide range of treatment suggestions including the classics (compression wear, exercise, salt, etc). It is well worth the trip. I am beginning to think about trying to get into the "POTS Clinic" (again, it's not actually a POTS clinic, but rather a specialty group that deals with all autonomic/ nervous system conditions), as my POTS runs a little deeper than what the cardio/hearth rhythms clinic could handle. I will try to remember to post back after I call up Mayo to ask about the Autonomic Neuro Department Good luck!
  10. I know how you feel. For me, it's so hard not to vent to the people close to me every time I talk to them! Especially those you don't see or talk to often. I sometimes find myself thinking, "ok, how many times have I complained about my POTS symptoms around this person?!" It's so hard to be "invisibly" sick and not want to be a downer all the time. POTS is truly debilitating in that sense. The best thing I've been doing to keep my spirits up is to treat myself to things that make me feel good: a fresh haircut, going out to coffee to read a book/draw in my sketchbook, a quick outing to the craft supply store, etc. I can totally relate to feeling like this dx is unfair. The hardest thing for me to deal with is the upkeep--there are so many things I need to do to keep my POTS "happy" and it feels very overwhelming. I often think, what did I do to deserve this?! The fact that it is also an "invisible" syndrome is also very hard. I wear a medical bracelet, which helps it become more visible to others, which has helped my spirits a lot! Not that I want people to feel bad for me! I just want others to have a sense of understanding when I have to sit down all the time, for example. good luck at your dr appointment!
  11. Thanks for all the thoughtful answers. It is appreciated!
  12. Hi! This is my first post. I was diagnosed with POTS last month and just now found this forum, which is so exciting because no one I know has any clue what POTS is! I've spent some time reading the forum here and there is a lot of information! My doctor recommended some treatments to me, which seem to be pretty common: -midodrine (10mg 3xdaily), florinef (0.1mg a day) -compression socks -tons of water -exercise [weight training (legs only, supine positions only) and light cardio (walking, at the most~) My question is this: It seems that there are SO many different methods of treatment, which is completely overwhelming. How did YOU decide on what treatment area to focus on first? For example, I'm not quite sure my meds are working for me and I want to look into possibly upping them, changing them, etc. But I also want to start exercising, which means researching a whole bunch on exercise for people with POTS. But I also want to focus on changing my diet to include less carbs! There are many areas to focus on, and I need ideas and anecdotes on how different people chose what to target at the beginning. POTS treatment seems to work best when a lot of small bits come together in unison. I know the easy answer would be "whatever is most important to you!" but to be honest, I am so overwhelmed that I need some direction! :) Bonus: I am incredibly, undoubtably lucky in that my local, in-network health care clinic is the Mayo Clinic in Rochester. If anyone is familiar, I saw Dr. Osborn in the Heart rhythms clinic. Any suggestions/recommendations/advice on Mayo-specific treatment is very welcome Thank you new friends!
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