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Faintinggoat

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Everything posted by Faintinggoat

  1. I have been on florinef for a bit now. The first 5-7 days I was on it seemed to be fine, however, I started having issues with eating after that. We increase the dose of Florinef because it does seem to be having a beneficial effect for my hypovolemia and bp, however with the increase of Florinef the eating issues started getting worse. I've never had issues with gastroparesis or anything like that (have had issues with ulcers and GERD but that's it), but basically what is happening is that I am not really all the hungry. I eventually realize that its been 24 hours since I ate anything, so I then force myself to eat something. Almost immediately after eating I feel like I couldn't eat another bite. I am managing to eat/drink just about 800-900 calories a day, which I know is not good in general, and especially not with POTS. I am going to talk to my doctor tomorrow, but wanted to see if anyone else had a similar response to Florinef? I know the response to steroids is typically the opposite (increase appetite). Anyway thanks for the input. -FG
  2. I am on Propranolol 20mg 4X a day for my tachycardia. Without the medicine my resting heart rate is about 90, from sitting to standing is about 120-130, and simple movements and stairs and stuff like that my pulse has gotten close to 180. With the propranolol my resting heart rate is about 60, heart rate from sitting to standing is about 80-90 and walking around is about 110ish. I still can't exercise but can at least get around now, which I couldn't do without fainting before the Propranolol.
  3. I am in university right now. And its certainly been a struggle. As soon as she has been accepted into a university, she should talk to the disability office, even if classes have not started yet. Because that will give her time to gather everything she needs prior to the start of classes. Generally all they need is documentation of the disorder by the doctors. I had a couple of accommodations (right now none of my courses are on campus, so I don't have them at the moment). First, I had a recorder for all of my courses as I sometimes spaced out and what not. Additionally, you can generally get a note taker for the course. I also had a pass to use a shuttle that goes around campus for people with disabilities. I also had permission to miss classes, and exams without any repercussions (as long as I made things up. Another thing, that I didn't have but many disabilities offices will do, is that sometimes they will allow students to take exams at the office or other location in hopes that it will reduce some of the stress. Hope that was helpful.
  4. I know from my perspective that this is hard. And I think that there are a lot of people who can relate to this. My POTS specialist is about 4-5 hours away from me so seeing him regularly is quite difficult. I have a cardiologist and PCP at home (also ditched my Neurologist), but its difficult because they are learning about POTS with me. This has made any treatment that we do attempt more difficult, and much slower to happen (and generally I'm the one who suggests it). Some Clinics and Hospitals that are highly specialized sometimes will do phone appointments, and coordinate with your local doctors after you have been initially tested and diagnosed. So I don't know if it would be worth looking into doctors at those kind of facilities. Did you have a specialist who initially did some of the autonomic workup? or was that your local doctors? If it was a specialist somewhere else perhaps they can try to coordinate with your doctors back home to making an effective treatment for you. Hope that this was helpful, Fainting Goat
  5. Lulu you are correct, I got confused it was the blood pooling test that decreased.
  6. Hello, I've been tested and classified as Hypovolemic POTS. I have had all the tests done that you mentioned, and the most note worthy part of the test was that my blood and plasma volume decreased by about 50% when I went from laying to an upright position. My red blood cells are at normal levels however I had low MCV, MCH, and MCHC (without low iron) meaning that my red blood cells are smaller, and not as well oxygenated as they ought to be. Fainting Goat
  7. lol yeah, it took about 2 days for my mates to start calling me it because they thought it was the most clever nigh name ever, lol.
  8. I hope that things improve for you soon. You are not alone in this, I have had some increase in symptoms and new symptoms since I had started back at university. This has been said already, you can have painless migraines. In fact, when I started see my physician in Ohio, they originally thought that it was migraines, even though I didn't always have the pain part. Though I would agree that it doesn't seem usually to have them painlessly every day. See your cardiologist if they are who you have been seeing for POTS, but it may not hurt to see an ophthalmologist to have your eyes checked and even a neuro. Well wishes, Fainting Goat
  9. Thanks IceLizard. Its been one heck of a process. Deferring (finishing the course later than anticipated) wont work. My professor said that because the course is seminar based, without the benefit of the lectures that it would be difficult for me to get what I needed from the course. I am currently working on getting the class I cannot attend dropped, however, I am out of late drop credits, which I need to drop courses after the first week and a half of classes. I am working on getting some reinstated to drop this course. I also contacted someone about adding a different course (even though its 3 weeks into the semester) that is taught online. If that doesn't work I'll give the financial aid department a call and see if there is any way I can get an exemption if I drop status. This is all just very stressful. I talked to my disability specialist, who sent me to a faculty senate member, who forwarded my email to another faculty senate member, who gave me a link to the worlds most confusing power point. I managed to get from the power point that I should talk to the dean of my college, who finally sent me to my advisor. I was at the point where I was so stressed over just figuring out how to do things, that I was considering withdrawing completely (which is oddly a significantly simpler process of checking a box on a website and hitting enter). Anyway, thanks for your input. Fainting Goat
  10. I have persistent asthma, so sometimes I don't have much choice in the matter of prednisone. I haven't had any adverse reactions to it until the most recent time. I do have accommodations on campus but the extent to which I am missing lately isn't really compatible with keeping up. I have contacted some people in the student affairs to see if they suggest anything. An incomplete is an option, but it has the exact same impact at my university on financial aid as dropping the course. Thanks for your input, IceLizard. I'm just really frustrated atm. Fainting Goat
  11. There are a lot of people that seem to be having issues right now, and it seems I am to be added to that list. I was doing remarkably well with the propranolol, but I started classes 3 weeks ago, and have one on campus. That in combination with having had bronchitis and being on prednisone seems to have triggered a POTS attack. Yesterday it was bad enough for me to go to the doctors. On the way home, I fainted in the pharmacy picking up the meds my doctor had just prescribed for me. I of course ended up at the ER because of it. I was taken in ambulance by one of my former co-workers which was mortifying. I felt better with the saline, but my blood pressure had dropped from 120/80 at doctors office to 100/40 at ER (I guess we know why I fainted at the pharmacy). My doctor added a fourth dose of Propranolol to my regimen, gave me meclizine for the dizziness (which doesn't really help) and is considering Florinef. I've considered asking about IV saline, but honestly, I hate asking about specific treatments/therapies because shes the doctor and I don't want her to think I'm some crazy person who just wants attention (I don't want that to sound offensive, that's just where my brain goes). I think this has been posted about in the past, but anyone how has had IV saline therapy have any input in that particular area? Anyway, I know that there is one other who has posted to the forums about it getting in the way of school, and it seems that may be happening for me as well. I am not at all worried about my online courses, but am quite worried about my on campus course. I am considering dropping it, but that will mess things up a lot when it comes to aid and whatnot. I know that health comes first, but its just a lot to deal with. Anyway, I will go for now. Thanks for reading fainting goat.
  12. My understanding is that Dr. Grubb is one of the best, Located in Toledo, Ohio. I went to Ohio for my testing, but I went to the Cleveland Clinic, instead of Dr. Grubb. I believe I have seen others post about him on the forums.
  13. I would see if you could get another TTT, honestly. My first tilt was supposedly negative. But my POTS dr ordered a new one and it was very much positive. It's like berfore the morning said, sometimes they aren't positive at first.
  14. I am so sorry that you had to experience that! This is always a concern with explaining the problem to other providers. My pulmonologist refuses to do a spirometry on me unless I am having a lot of issues with my asthma because it can trigger the autonomic nervous system. However, they had to fight for that because its standard of care, and protocol, for asthmatics to get lung function tests annually. I have oddly enough experienced the wall of indifference you are talking of with my original neurologist. Basically, when my EEG came back normal, he decided that I must be crazy, and even refused to give me my results of the test (it was my primary that had to tell me all of this). I think a lot of people have experienced this, but I'll let other weigh in on it. I hope that you feel better soon\ fainting goatt
  15. I was on coreg before I was switched to to propranolol. And I had the same issue, I was so unbelievably sleepy. I was probably only awake a few hours a day, and was constantly napping throughout. My doctor kept me on the medicine for a month because it is certainly one of those side effects of bb's, but can also decrease with time. For me it didn't decrease and in fact made me worse and I was switched to propranolol. I had some of that with the propranolol and it went away relatively quickly after my body adjusted to the medicine. Hope for the best, Fainting Goat
  16. Thank you all for your kind words, and input. I am seeing the disability people today like I said, so I will bring it up with them. It definitely feels like a huge feat just to be talking about the idea of graduating after everything. I def don't want to make a final decision right now, rather I would like to sit with it and think about it for a while. Because I know there is a chance that I might regret going on day if I do not. Anyway, thanks everyone again for the comments. Fainting Goat
  17. I have a meeting with the disability people on campus on Tuesday for my semester accommodations, I'm sure I can ask. But I can't see why they wouldn't be able to.
  18. Hello all... I don't know how many people will have input on this but, I am a senior at university right now, and I graduate in August. Lately I've been considering not walking at graduation because of my health status, though this might change between now and then. I go to a very large university (40,000 undergraduates alone), so even the summer graduations are very large (several thousand people) and thus long. There is so much about graduation that screams POTS trigger. Not hydrating well, not being able to take my meds at appropriate times, Sitting still for hours at a time, getting up and walking after long periods of sitting, being around thousands of people, etc. For me it isn't about walking. It's been such a difficult haul for me over the past 6 years that just getting the degree is such an amazing feeling. But I also know that there are many people who have helped me along the way that want to see me walk. I'm not looking for anyone to tell me what I should or should not do, I am simply just looking for input. Fainting Goat
  19. I saw a chiro, and it didn't make much of a difference in anything as far as the POTS goes. He did the electro stimulation of the acupuncture points, but I've never had actual acupuncture done with the needles and all. I have a friend who lost his legs in Afghanistan and he had Acupuncture to help with the phantom limb and he swears by it, so that seems promising to me. If you do go about doing one, it might be a good idea to talk to your dr about it first. Take Care Fainting Goat
  20. IceLizard, have you ever heard of the spoon theory? if not here is an explanation of it. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ I think that it is a good explanation of what it is like to live with POTS. Anyway, I completely understand what you are talking about. I am a senior, I have this semester, and three courses in the summer, and then I will be graduating with my bacc. The past few years of my life have been so hectic that it has taken me 6 years to get to this point, and while I am so looking forward to getting my degree, I have more times than not where I just feel like it would be better if I just drop out, especially with syncope issues. Something keeps me going though. I hope that you have a better day tomorrow! Fainting Goat
  21. My doctors said that she believed that the visual changes were just another symptom of my POTS, so that's a bit of a relief. Its just scary when you get new symptoms, even if you are fairly certain they are part of the POTS. Thanks everyone for your responses.
  22. I am currently a senior in college, so when I saw this it caught my eye. Thought it would be worth passing on. http://www.stanforddaily.com/2014/01/09/hidden-in-plain-sight-disabilities-at-stanford/ Fainting Goat
  23. hmm, so it seems that at least some other people have experienced this. I was unable to get into my dr today, the scheduling is weird, you have to call at 8am for same day appointments, and waking up at 8am for this particular POTSie isn't compatible and I didn't wake up to my alarm. I'm starting to think mine might be related to my migraines. I had the visual issues yesterday, and then had a headache after. though I've never had Auras with my migraines before. Anyway, thanks for the responses
  24. My experience has been pretty much like everyone else experience. I had very long very thick curly hair when I had my normal EEG and they had some difficulty getting one or two of the electrodes to stick, but once the did it was fine. Are you just having the normal, in office EEG? I also had a 72 hours ambulatory EEG, and those are a little bit different than the normal, in office ones.
  25. Thanks for your response. I have been a bit anxious about this, as I have never had this happen to me before. I have had high eye pressure in the past, though my pressure has been normal for the past 2 years. Things are okay now, blue is blue and yellow is yellow, but I am still going to get checked out tomorrow to make sure. I've also had issues with migraines, so idk maybe it could be related to that too.
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