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Everything posted by KiminOrlando

  1. They have me on a beta blocker to slow my heart rate. They say for me, once my heart gets going too fast, it causes my BP to drop. I don't know if this is the case for you. Did they do a blood draw and check norepinephrine levels in you? It is usually done after standing for 10 minutes, often as part of a tilt table test. My next med was Northera, but it isn't an option for everyone. It increases norepinephrine - at least, that is my understanding. I'm not a medical person. My doctor said that everyone can't take it because it can be dangerous to put too much norepinephrine in your body. They gave me a serious conversation about monitoring my BP and tracking symptoms before putting me on it. It honestly made me think twice about going on it, but I did. I'm glad I did and it made a huge difference for almost a year. I have recently gone back off of it and will be seeing my cardiologists soon. I guess it is possible your reaction to the med could be incidental and not because of it, but it is HIGHLY suspect. If it goes away and then comes back, that is a pretty good test. My doctors do that to me too. Sorry things aren't going smoothly with Midodrine. Relax for a week and don't think about it, then try it again. Nothing about this disease is for sissies. Keep us posted. Kim
  2. Oh, no! I don't know if you can skip or not. I can tell you that when my headaches started, it took 36-48 of no meds to make it go away. It doesn't necessarily mean that is what is happening to you though. I hope we haven't told you our stories and made you so apprehensive that we (I) caused the headache. Can you call the doctor and ask what you should do? Can you stay on it and make it until Monday when they should be open? Maybe a pharmacist can advise you as to the risks of stopping or skipping doses if your doctor isn't available. I feel for you. These things seem to happen most often on the weekends when help isn't as readily available. Keep us posted. Kim
  3. Hi Mom K. Sorry to hear your daughter is having that much trouble with gastroparesis. I don't have any experience with subcutaneous fluids, but I do have gastroparesis. What kind of gastroparesis meds do they have her on? They put me on Domperidone and it changed my life. I think you have to have a specific kind of gastroparesis for it to work and it isn't FDA approved, some some doctors are hesitant to prescribe it. Maybe you already tried it or maybe her type of gastroparesis doesn't work with this med. I don't know, but I just had to ask. I hope you find something that works for her. Kim
  4. Do you know what company is doing this? I ask because there is a company I am watching that is doing similar research. I heard about them on CNBC when the CEO was interviewed. It sounded promising.
  5. Hi Cat. I'm glad you finally got something to try so that they can start working on your symptoms. My experience with that med was horrible, but it works for some people. It gave me headaches so bad that I ended up in bed, curled up in a ball, holding my head with my hands. I couldn't watch tv, eat, talk to anybody or be around lights. I couldn't even think straight to realize it was the med that was causing it. I was like that for a week before I figured it out. Then 8 years later I forgot it was that particular med that did it to me, and I did it again! It is a med you have to try before they can progress you to other things or insurance won't pay. I don't want to discourage you. That med works fine and has helped a lot of people. I just didn't want you to lay there like me thinking that your blinding headache was something else if that happens to you. And I certainly don't recommend doing it twice! I'll keep my fingers crossed for you. Kim
  6. Before I was put on meds, I could pass out several times in a day. I learned to quickly stop what I was doing and rest flat on my back or I would regret it. It takes me way longer to recover from a full blown faint than to recover from feeling like I am going to faint. I'm so good at knowing how far to push things that I rarely fully faint anymore, but I have the luxury of not having to be on anybody else's schedule- just my body's, so that helps TREMENDOUSLY. If I had to get ready for work and meet deadlines, I would have to push things and end up on the floor unconscious again. I think you can maintain a decent appearing BP and still faint. I'm not sure if that is the one they call 'low flow' POTS or not. I think it can also have to do with the blood flow/O2 to the brain (they may be one in the same). If your cardiologist is out of ideas, you may need to look for an experienced neurologist. I think they are the ones that diagnose blood flow issues to the brain and technically, it could still be other things triggering your episodes. Hope you find some answers. Kim
  7. My finger monitor blanks sometimes too. I just chalk it up to my Reynaud's, especially when I am standing up.
  8. Hi, SScott. Many of us have gastro issues too. I think from there, it depends on what kind of POTS and if you have other issues besides POTS. For me, I have adrenal issues and thyroid. The problem with dysautonomia seems to be that it is an umbrella term and, while there are a lot of similarities, everybody is different and how we respond to treatment is different. Add to that the fact that you can run the same test on us on five different days and get five different results, from the same person. It can make it difficult to diagnose. I hope you find answers. Kim
  9. Glad you aren't alone. Trust me, it is scary to pass out and wake up on the floor in the bathroom with nobody but a cat around - not sure if he is concerned for your well being or if he is calculating who is going to feed him if your dead. ? Don't live alone any more. The cat was not trustworthy.
  10. Ok. You need to keep a log. It sounds like you kinda do what I do, but you need to call the doctor tomorrow and let them make some decisions. They may decide to do nothing, but it needs to be their call. When it happened to me, I googled O2 levels and researched what was 'ok' and what was 'bad'. It was interesting what starts to happen once you get to the mid 80s and how quickly things can spiral out of control. I have a friend that was on a beta blocker to control the tachycardia and another med to control the low side. They ended up giving her a pacemaker because her heart rate kept dropping to 40 and her O2 kept dropping too low. The pacemaker kept her off oxygen. Glad you are better. Kim
  11. Hey. Does anybody have any experience with hypo POTS and taking the pain killer Nucynta? I was reading that it blocks norepinephrine and that just doesn't sound like a good idea. I think I remember my doctor saying either I didn't have enough norepinephrine or that my norepinephrine receptors were blocked and that was the reason for my POTS. It also mentioned that it decreases cortisol levels and since I had an adrenaline crash after my last surgery, I don't think this should be my post op pain killer. Any thoughts or experience you could share would be greatly appreciated. I saw a thread several years ago, but it looked like it was more about hyper POTS, I think. Also, is a norepinephrine blocker the same as a Mu-inhibitor? Thanks. Kim
  12. It could be a problem. Get out your insurance card and see what phone numbers are on there. Some of them have 24 hr nurse hotlines. Try that, but you may need to get some help. O2 shouldn't be that low. Mine drops like that for a few minutes but rebounds. Heart rate is too low as well. You may need the ER so that a medical professional can evaluate you. Bad things can happen if that is a prolonged situation. I would be surprised if sleep turns out to be a factor. I hope you aren't home alone. Please keep us posted. Kim
  13. Hi Starbug. Frustrating is the name of this game. I know they tell you 36 - 48 hours is enough time to be off the meds for that test, but sometimes I think some meds stick around longer than that, of course, I have no medical proof. I'm on Northera and have been having more headaches lately, so I thought I would stop that med and see if the headaches got better. They didn't, but I was off the med for 2 weeks before I tried to pass out in the shower again. Something kept that from happening during that time frame. Makes me wonder if it was residual Northera. I'm back on Northera because my heart rate went back to 130 and I had to take a break and rest before I could finish my shower. Experiment over. Northera has been good for me, but it does elevate your BP. If your BP is not terribly low right now, I can understand your concern. Part of their protocol, at least when I started, was to make sure you had a good BP machine and get you to check it several times a day keeping a log. My doctor had me put the machine on my nightstand so that I checked my BP before I ever even sat up. He wanted to make sure it never got too high. I am on a relatively low dose at 200 mg 3x a day. If you are concerned, talk with your doctor. Northera is a big step. I was nervous when I started it because it came with so many warnings. And if you get some info about alternative treatments for hypothyroidism and adrenal insufficiency, I would be interested. I'm in that boat too. Good luck. Kim
  14. I checked with my friend to find out how they check pulmonary pressure and she said they do an echo. They probably already checked for it when they were doing a cardio work up. If your ratio was less than 1:40, they may just put negative on the test. Unfortunately, the people I know who get tested seem to turn up positive, so I don't have anyone to ask on that one. I am short of breath a lot too, but they determined for me it is the tachycardia. The docs had me buy one of those fingertip O2 meters to track what is going on. They aren't that expensive and maybe it would give them something to work with if you could keep a log. I learned that I am oxygenating ok, most of the time, even though I am out of breath. The only exception is when my heart rate drops below 60 (normal is 93-105), then O2 drops to the mid 80s. We are working on that one. It only happens about once a month. Feeling like your chest is tight and you struggle to get a deep enough breath sounds alarming. I have heard other people say that they felt like their body forgot how to breathe, but nothing like that. I hope you find answers. Kim
  15. What was you ANA ratio? It should be 1: and then another number. If you don't have that number, you don't have the results, you have a report. With breathing issues, I am concerned about scleroderma. My best friend has it and ended up on oxygen before they got it under control. It is fairly rare and unlikely, but I wanted to mention it. Her case was severe and her ANA was positive, but not all cases present that way. For a dermatologist to run an ANA, it makes me think that was what they were looking for. Can you ask them why they ran the test and what disease they were trying to rule out? If they say scleroderma, I would make an appointment with a Rheumatologist. I hope this helps. Let me know if I can help with anything. I don't know a lot, but I have some experience with some autoimmune. Kim
  16. It is the Topamax. I am on it too and have similar headaches. I had to take a med short term that I couldn't take with Topamax, so I had to go off of it. Let's just say it was a painfully memorable experience. Before that, I didn't really think Topamax was doing much for me because I was still having headaches. Now, you better have a darn good reason for me to go off of it, even short term. The docs found that I have a Chiari 1 Malformation which may be contributing to my symptoms. I will see a neurologist next month about that. I assume they have done those kinds of scans on you? It is very rare and probably not part of your problem. Headaches are just part of the experience. You can check with your doctor about temporarily going off the Topamax for like 2 weeks so you can get an idea what it does for you. I wouldn't try it without approval from a doctor. As far as making them totally go away, let me know if you find that answer. I need it too. Did you go to a neurologist or is this all from a pain management doctor? I think a neuro would be better because they are looking for more things like restricted blood flow to the brain and spinal stenosis. I don't know that a pain management doctor has that kind of expertise. I have been through nerve conduction tests on my arm and it was one of the worsts tests I have ever had. They did it from my elbow to my wrist by sticking needles with wires attached in to my joints. As it turned out, I had undiagnosed Rheumatoid Arthritis, so my joints we inflamed and very painful. Everything came back normal. I assume they ran an ANA test on you. Do you know the results? I haven't had the biopsy. I don't know what additional treatment a positive test would give you. I hope you find answers. Kim
  17. For the gastroparesis, have they tried Domperidone? It worked on me. I think you have to have a specific kind of gastroparesis for that med to work, and it isn't magic, but it made things better for me. It isn't FDA approved in the US so it has to be compounded. Some Gastroenterologist won't prescribe it for that reason. If you are not in the US, it is approved in many countries and relatively cheap. Canada and the UK for sure has it. Kim
  18. Hi, Dizzy. I feel for your daughter. When my brain fog was so bad I couldn't remember words to talk to people, they eventually found pernicious anemia in me. I was put on B12 and things got better enough that I could carry on a conversation. Have they checked her for pernicious anemia? I don't know if she has gastroparesis, but pernicious anemia often goes with that. If she does, oral B12 won't help. My brain fog was so bad I couldn't even watch television because I couldn't follow the plot. It was embarrassing. I didn't drive during that time either. I hope you find something to make it better for her. Kim
  19. Hi Mom, Did you get a copy of the results of the ANA test? I only ask because for years I was told mine was "negative", but when I went to someone who did research in addition to seeing patients, he said it wasn't "negative", but really "inconclusive" initially. It wasn't normal, but it wasn't clearly positive. Evidently, there is some gray area with autoimmune diseases. Eventually, it turned overtly positive, but it took many years. My POTS started at puberty, so that is their best guess for a trigger. My Rheumatologist's theory is that dysautonomia caused the autoimmune disease. None of this can be proven. They have checked your pulmonary pressures and it came back normal, right? I'm sure there are answers out there. I just wanted to make sure you knew to get a copy so you could define 'negative'. You may already have a copy and have a true negative. I hope this helps and I hope you get answers soon. Kim
  20. Ok, let me start by saying that there are different kinds of TTT and I don't know what kind you are going to get. You may not get what I got. I have hypo POTS and I was afraid of the TTT too. I had to get an IV and yep, I am also a hard stick. They told me the IV was there in case I didn't naturally have an episode while I was strapped to the table and wired in to all their monitors. If it didn't happen naturally, they would need to inject medication into the IV that would make my chest pound and make me feel awful, but that nothing bad would happen and they would be there with me the whole time. They needed to figure out what was happening to me. The way they described it, it was scary, but I was glad they told me instead of getting there and then they just start doing it. I ended up passing out all by myself. I don't remember if they did a blood draw or not. I just remember being relieved that it was over. I don't know anyone who has been through the 'bad' version of that test, but I am sure there are some on this site. What I can tell you is the fear of that test was the worst part of it for me. However, that test was the first step to being taken seriously by medical professionals and getting treatment that made my life better. Ask some questions to find out what the IV is for. Your test may not be like that at all, but I wanted to say something so you would know to ask. I agree about not driving yourself - if you pass out you will feel terrible. If they give you meds to try to trigger something, you may feel awful. Just the stress from worrying about the test may fatigue you. It is a long road to get diagnosed and treated for dysautonomia- and that first big step can be tricky. I feel like I have just made things worse. You may get lucky and find out they never were planning to give you meds to trigger an episode. I know they don't do that all of the time because I have had other TTT and they didn't. Or I could find out that first doctor just liked to torture me and there really isn't a 'bad' version of this test. ☺ After all of that, his treatment plan was for me to get on a treadmill. I remember thinking, "if I could do that, I wouldn't be here!" Best of luck! Kim
  21. Have your stylist mix sweet and low with your salon hair dye. I have shoulder length hair and use three packets. Test a spot at the base of your neck first and wait a week to see if you react just in case, but I don't react any more. Works like a charm for me. I don't think you can substitute anything else for sweet and low. Hair dye we can buy and do ourselves has too much of whatever burns me, so even though I used the sweet and low, it hurt very badly. I will never try that again! I might feel bad, but darned if I'm going to look bad. It is a daily struggle. Hope this helps. Kim
  22. I have heard of it. I don't know anything about it except to tell you that my Aunt knew someone that had POTS and had one put in. It worked for them. She told my mom this story when I was first diagnosed, but told her she didn't know the person any more to ask them any questions. I don't know what kind of POTS they had or anything else. My info is just shy of gossip. Keep pursuing this, though. It might turn up something good. Good luck. Kim
  23. This is a very interesting question. I live in Florida and can't say that I feel these fluctuations that I hear you guys speak of. I don't know if I am just too obtuse to notice or if I lucked out with pressure issues. In the summer we get terrible thunderstorms, but I don't know if that counts as low pressure systems. We do get hurricanes, in fact, just had a category 3 in October, and I didn't notice a change. With the hurricane, I just assumed there was enough excitement going on with preparations that the adrenaline offset any negative health issues. Can sea level versus above sea level also contribute to it? All I can tell you about dysautonomia and Florida is the heat keeps you inside or in water from early April to Thanksgiving. If I had a nickel for every time someone said, "You live in Florida. Where is your tan?" I would be in a mansion on the beach. ? Kim
  24. I don't get any more headaches than I had before taking the meds. The only thing that happened to me was that my stomach hurt about an hour after taking the med, but it did so much for me, I decided to put up with it. After about 6 months, that side effect went away. There was some speculation that it was effecting my digestive tract because of the gastroparesis (jump starting parastalsis), but nothing was verified. It was all just talk. The dosing is trial and error. No better way to say it. You have to get a good BP monitor and keep a log. They had me checking bp sitting, lying down, standing- several times a day. Once you take the first dose, you cannot lie down because your bp can get too high. I take it 3 times a day. They started me at 100 mg 3x for a couple of weeks. I had to send a spreadsheet of my bp readings to my doc for him to evaluate, then he upped me to 200 mg. Same thing with the spreadsheet. He then upped it to 300 and I took readings, but started to feel dizzy, so he backed me off to 200 and I have been on it for 6 months like that. For me, this med was the right choice, but things can always change. What other things are you concerned about? There is always risk with a med. This is a new med, so there aren't any long term studies on how it will effect us. It comes down to balancing how it makes you feel vs future unknown risks. It all comes down to quality of life for me. As far as how it works pharmacologically, I don't really understand it. Have you been to their corporate website? They talk about droxydopa on there and most of it went over my head. Maybe I should have asked more questions. I don't know if it is a substitute for norepinephrine or what. If that is what you are looking in to, I would love to hear the explanation. Good luck. Kim
  25. I'm on it. What do you need to know? Kim
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