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Everything posted by KiminOrlando

  1. Something that I just ran across and made me think of this post is called adrenal storm. I don't know where you are with treatment or if this was mentioned, but I thought it was strange that I just read this post today and learned about adrenal storms a few hours later. I hope your problem was already solved though. Kim
  2. Hi Katcanny, I used to have a reaction to hair dye just like what you said and I found a stylist who knew a trick to avoid it. Once you completely heal, if you are up for it, have the stylist test a spot on the underside of your hair at the nape if the neck so it doesn't show. The trick is to add a packet of Sweet and Low to the dye for the test site. Let it sit like you would if you were doing your whole head, then wait a week to see if you react. It must be Sweet and Low to get the desired chemical reaction. My hair is shoulder length and when we do my hair, I use 3 packets mixed with the dye. You may need more, depending on the length of your hair and your reactivity. THIS DOES NOT WORK FOR DO IT YOURSELF HAIR DYE. Professional hair dyes only. I thought I would try it myself and I was miserable for about 2 1/2 weeks. It may not work for you, but I thought I would pass along the info. It is one thing to feel bad, but we should at least be able to look good while we are enduring it. Feel better. Kim
  3. Hi Dizzy55, The clothes thing happens to me... shoes too. I know my feet swell from cardio issues, so I have to be careful what kind of shoes I wear. Loose fitting sandals work best for me- thank goodness I live in Florida! Once I got on a med for gastroparesis, my clothes fit a little better, but swelling still happens. My gastroenterologist said that is normal, but if you don't have gastroparesis, I don't know. I just wear loose fitting clothes and, if I have to go somewhere important, I don't eat until I get home, just water. Wish I had answers for you. Kim
  4. Hi Katcanny, I was told by my doctor that .1mg is a 'normal' dose of florinef. He said he doesn't raise the dosage. It either works or it doesn't. That was several years ago, so he may have changed his mind due to more recent research. Interesting how they come to their conclusions. Can you feel a difference with the increased dose? I hope you are feeling better. Kim
  5. Sorry you won't be able to travel to see Dr. Glenn in SC. He just called me at home to follow up on some stuff with my last appointment. Good doctors are hard to find. I was afraid of my tilt table test too. Who knows, you might get lucky like me and pass out naturally, which means they won't have to give you any of those meds to simulate it. Bizarre life we live when we say passing out is getting lucky, huh? Good luck. Kim
  6. I don't know where you are, but if you want to go to Charleston, SC, there is a cardiologist at MUSC who treats exclusively autonomic disorders. If your insurance will let you see him, he will take you without a referral from another physician, just tell them idiopathic hypotension, suspicion of autonomic dysfunction. His name is Dr. James Glenn and he is very good. I had the same trouble in Orlando. Nobody wanted to do any tests, just called it anxiety and told me to deal with it. If you are trying to get seen in Boston, you probably aren't close to South Carolina, but you may have to start there to get a correct diagnosis on your records so doors will start to open for you. I still go there for treatment and still encounter physicians in Orlando that tell me there is nothing wrong with me and I am over medicated. It took me 20 years and so many local doctors I lost count before I decided I had to do something drastic like search out a specific physician who specializes in what I think I had and drive 300 miles to see them. It was SO worth it. I wish you luck. Kim
  7. I heard something about B6 toxicity causing nerve damage and loss of coordination. B6 is somehow tied in to norepinephrine production, so you would think some of us might need extra, but I guess if you take it they need to monitor you closely with blood tests. My understanding is that the damage can be permanent. I initially thought all water soluble vitamins were safe and that you couldn't overdose, but evidently, that is not the case with B6. If you haven't already done so, google B6 toxicity. I know everything you read on the internet isn't true, but it might be a starting point to ask more questions of your doctor. Sounds like you have a smart neuro. Mine didn't tell me this and he knew that I was on a B vitamin complex that included B6.
  8. Did they run the breath test? It tests for overgrowth of gut bacteria which is also regulated by the autonomic nervous system? It is a long shot, but a possibility. I had it, took some antibiotics to kill off the bad stuff, then went on a specific kind of probiotic my gastro likes and things got better for me. I hope you find the answer. I remember those days and I know how much it impacts daily living. Good luck. Kim
  9. I tried both of those meds with no results either. I didn't track my BP as closely back then, so I can't give you correlating data. I have heard it isn't uncommon though. I started Northera in March and have had significantly positive results. BP can, at times, be normal-ish. Heart rate, however, is another story, but I will take what I can get when I can get it. Northera isn't an option for everybody. I also read about another drug in Phase 2 trials right now, so there may be hope in the future if your doctor doesn't think Northera is for you. Keep up the good fight. Eventually, I believe we all will find something that will help us, even if it is only incrementally. Every little bit helps.
  10. Hi, Kaitlyn. Hope you are feeling better. Sorry the neck brace didn't work, but I can't say I am surprised. I was hoping for a different answer though. So, I am back from my doctor in South Carolina and now have a referral to a neurologist for my next visit. They still don't think my problem is the Chiari but suspect a problem with my blood pressure in and around my brain. They are looking to run some tests with the new neuro. I could go back to the old one that ruled out the Chiari, but not sure I should. Speaking of him... I forgot who at Mayo ruled out my Chiari back in 2008. It was Dr. William Cheshire. My doctor just got back from some autonomic conference a couple of weeks ago and ran in to him there. Evidently, he is also one that researches and publishes. I saw some recent articles since I last researched Chiari, so maybe they know more than they did when he saw me or maybe it really isn't the Chiari for me. I haven't had time to read them yet and probably won't until after the holidays. It looks like I was seen by a very good neuro back then. If I get a different opinion from the new guy because of new research, I may try to go back to Cheshire to see if he concurs. Keep me posted to as to what you decide for your treatment. I hope you find relief. I just wish it didn't have to be brain surgery. Take care. Kim
  11. Thanks, Kaitlin. I'm very interested in that info. I always go to my doctor with a list of questions and a pile of research. This is going on the top. I am back in his office on the 10th. I don't currently have a neurologist because I just haven't found one near me and wasn't really sure that I needed one since my cardiologist has been so good at handling this stuff, but I may need to be more proactive because my headaches are getting worse too. My parents only live 2 hours from Vandy, so I may try going back there again. I'lI check back here to see what happened with you next weekend if I have time. I will be trying to clean my house for my parents to arrive. They go with me to Charleston, SC to my specialists. Cleaning at my pace will take 3 days - I'm sure you know how that goes. I can't imagine keeping my neck immobilized as a solution. I hope there is a more comfortable plan going forward for you. I hope they find it.
  12. Hi Kaitlyn. I have a similar story. Chiari, too small to really matter (I don't remember the size), flat MRI, POTS, Pure Autonomic Failure, pain in my neck at the base of my scull. It is bad enough this last week I can barely turn my head. My dizziness happens if I turn my head too quickly, or go from upright to flat or the other way around. Bending over or leaning my head back to look up at the ceiling is also bad. There have been a few times that the dizziness has lasted a couple of days and it was miserable. It was like trying to walk drunk and when I finally made it to a stationary object to sit, it felt like I was on a carnival ride that I couldn't get off of. I was literally holding on to my bed so that I didn't fall off. If I turn my head too far, I start to faint and as soon as I turn back even a little, I get instant relief. Depending on which of my doctors you ask, I get a diagnosis from Minear's disease, some kind of middle ear stones, or that it is just part of PAF. Like you, I never understood how you could see if something was hanging down too much if you didn't look at it while it was hanging down, but I just let it go because I didn't really like the idea of even "minor" brain surgery. I am going back to the doctor in a few weeks and had already decided this is a topic that I want to bring up. The pain is just getting to be too much. I'm very interested in what you learn from your doctor visit. I have a high school friend that had Chiari surgery and is doing great. Evidently, this is more common than I thought. If you don't mind, please keep us posted. I wish you luck in finding the answers. Kim
  13. Yes, this happened to me shortly after I started taking Florinef. My cardio told me it was because that med sucks the potassium out of your body and he wrote a script for supplements. He now monitors my potassium levels. It still happens, but to a much lesser degree. I assume it is just dehydration from not drinking as much over night, but I don't really know. It isn't a big enough problem for me to mention to my doctors anymore, but before the potassium supplements, it was a huge problem. I don't know if you are on florinef or not, or if my experience will help you. I hope you get to the bottom of it. Good luck!
  14. Sometimes they also check SED rate to see how much inflammation you have in your body. Some of us have autoimmune diseases with dysautonomia, but not all. My ANA was positive at first but no specific antibody test was positive. Your question is a complicated one. Sometimes the results of these blood tests do not give you clear answers. Hopefully, you will get answers though.
  15. I had to get an attorney for the SSDI. My attorney told me there is a clock running on these types of claims and once it is up, you are no longer eligible. I believe she told me 5 years was the magic number. For your sake, I hope I am wrong. Most attorneys take the case on a contingency basis and collect a percentage of what you collect, plus expenses. I had to take my case to a hearing before it was granted. It took 3 1/2 years with an attorney. Best money I ever spent, and my private disability insurance ended up footing the bill. Our types of disabilities are too complicated for them to be summarily approved. You have to fight with skilled fighters. My attorney filled out ALL paperwork. I did nothing on my own. They wanted to control the entire process just because it was a complicated diagnosis. Let me know if you want the name of the firm I used. I believe they are national, or at least in multiple states. I wish you luck and speed.
  16. I had foot and ankle surgery on Friday morning. I felt fine the rest of the day, but when I got up Saturday morning, I didn't make it 20ft before I fainted. I have POTS and Pure Autonomic Failure. A long time ago they also mentioned adrenal insufficiency, but seem to have dropped that as of late. When I was on the floor after fainting, unable to get up, my mom checked my bp, but couldn't find one. Normally, with all of my meds, I do have a detectable bp supine. I have had this problem before and they used to give me solumedrol (sp?) for surgeries, but it seems like they just forgot it was a problem. Does this happen to anybody else? Do you get steroids before, during or after surgeries? Who prescribes this? I didn't go to my local ER because I have struck out with them in the past on multiple occasions. It was so bad I couldn't even sit up. That NEVER happens. I ended up taking a prednisone that was left over from an old prescription and calling my cardiologist on Monday morning. (My cardiologist is out of state because I can't find anyone local who claims more than, "I've heard of it" when asked about PAF). By Sunday things were fine. Wish I could say the same for the stool I broke when I fainted.?
  17. Hi. I'm in Orlando and have a good gastro, but that is really it locally. I ended up at MUSC in Charleston, SC because of autoimmune issues and just unloaded everything on them when they went to take my patient history. They got me help. I was referred to Vandy and it was well worth the trip. My treatment is run out of SC with my GP looped in down here. I couldn't find a good Rheumatologist in Orlando and have just tried out a Cardiologist a few weeks ago. He at least knew what I had when I told him I had Pure Autonomic Failure. I have to have minor surgery at a local hospital and the surgeon refused to do it unless I found a cardiologist he could call in case something happens. If you find someone, please let me know. I would gladly drive to Tampa for a good doc. I almost got entubated in the ER one time because my O2 was in the high 70s and I was just dehydrated from an infection. They really had no idea what to do with me even when I told them what I had. Luckily, lying flat in a bed with an IV in my arm brought up my BP, which helped my O2. I wish you luck. Kim
  18. Hi, Becia. I'm sorry to hear you are having such problems and hope you get to a point where you can go home and manage. I too became fully disabled at 34, and honestly, it was a relief. I had to hire an attorney and it took over 3 years. That was over 10 years ago. It is my understanding that a 24 month review is pretty standard. I have gone through several of them and I remember how stressful my first one was simply because of how hard it was to get approved. (I had to schedule a bench trial with a judge.) What I will tell you is to keep a log of what doctor or other medical professional you see and when. Any phone calls about medical stuff, even insurance and prescriptions. My review forms wanted 2 years worth of dates and where I went on vacation- like I had money or energy to take a vacation! Once they realized my life was really about managing my illness, they approved me without question. I make a copy in case they call me and ask me questions about it, I will know what they are referencing. I fill out way too many forms about my health these days. I continue to do this every 24 months. I hope you feel better and I hope this takes a little of the stress out of the review process.
  19. I'm in the U.S., so things were slightly easier for me. It did take 15 years to get someone to believe me, but they did a gastric empying study on me once I got the dysautonomia diagnosis. I was told it is common to have gastroparesis with dysautonomia, but not everybody does. I didn't lose weight because of thyroid and other issues, so that is why they didn't believe me. I had pernicious anemia, which I was later told was a symptom, but again, I don't know if everyone with gastroparesis has that. What I can tell you is that my gastro put me on a med 4 times a day for gastroparesis and it changed my life. It isn't approved in the U.S. so I have to get it specially made. It is approved in the UK. I rarely have to take anti-nausea meds anymore. I'm not sure the rules of the forum allow me to post specific medicine information, so I won't. What I will tell you is to eat like you would normally do when you go to take the test, if they order it. If you get sick there, that is fine. It will let them document what is happening. If you have any more questions, please feel free to ask me. I hope you don't have this because there is no cure. I hope it turns out to be something easy to fix, but if you do have it, it can be managed with the right meds. Good luck.
  20. I had a negative experience at Mayo Florida. I went to Vandy and they helped me. I am currently being treated at the Medical University of South Carolina in Charleston.
  21. And we meet again... yes, this happens to me. I never told Dr. Glenn because I was focused on more important issues and we just haven't gotten this far down the list. I didn't want to overwhelm him. I chalked it up to autonomic too because it controls body temp. What I noticed about me was that when I get sick with something like the flu and run a legit fever, it runs higher than a person without autonomic problems. Then instead of my temp going back to 98.6, it goes to something like 97.2 for about a week. It is like it can't get regulated again for about a week and I can barely walk. Eventually, I get back to 'normal' which is random temps from 99.4 to 99.9. I was even sent to an infectious disease doctor by my primary to ensure there wasn't some kind of latent infection because I am on immune suppressants for Mixed Connective Tissue Disease. If you get a more concrete answer to this, I sure would like to know. I may be at a point with Dr. Glenn where I can add this to the mix without confusing everything. When I first came to him it was like a triage situation-- treat the most important things first to make life more bearable. The fevers were like problem number 87.
  22. Yes, on the therapist. Just go in and be your normal, fatigued, brain fogged self. :>) I did and it wasn't an issue. Denied twice even with a lawyer. Hearing was set, attorney asked for summary judgement from the judge and it was granted weeks before hearing date. Judge wanted to get the easy stuff off his desk. Took 3 1/2 years though. I had disability insurance through my job, so they reimbursed me for the money spent on the attorney. Don't know if you are lucky enough to have it or if they are good enough to make the same offer. Mine wanted to be off the hook for part of the monthly payment, so it was worth it to them. Not sure if it is true, but my attorney told me if I didn't get approved within 5 years of my last day of employment then I would no longer qualify. You may have a clock ticking on this. See if an attorney will give you a free consultation. I would hate for that to be true and you lose out because of red tape.
  23. Dr. James Glenn at the Medical University of South Carolina only does dysautonomia. He is a cardiologist and he is fabulous! I travel from Florida to see him and have for years. He is very hands on and spends time listening to you. He is in the Ashley River Tower building.
  24. My doctor told me your cycle made POTS worse. Something about the adrenals. They put me on birth control to take away the cycle and it made a huge difference. I used to miss work 3 days out of 28 because I couldn't stand up and stay conscious. I wouldn't trade the birth control for the weight gain. I liked being skinny, but I need to be able to walk across my house and keep my job.
  25. Pure Autonomic Failure here. Heat intolerance. No supine hypertension. No response to Midodrine. I just started on Droxydopa. So far, nothing else has worked, but only a couple of weeks with the Droxy. I am being managed by a fabulous cardiologist out of the Medical University of South Carolina. I got no help until I went to Charleston. Unfortunately the Mayo Clinic couldn't do anything for me You said hypohidrosis. Did you mean hyperhidrosis where you are constantly sweating when you stand up? Yes, mine got progressively worse, so that may be happening, or there are different kinds of PAF, is my understanding. My cardiologist only treats cardiac issues with autonomic involvement, so you need to find someone like that. They are very difficult to find, unlikely to be in your town. Most of them are at University hospitals because they are typically involved in research. You may have to search PUBMED (BING search PUBMED home, then when it brings up the page, put pure autonomic failure in the search box). Start reading the physician published articles. It is technical and I don't understand a lot of it, but the more you read, the more you start to understand. My docs contacted a specific doctor who is published on PUBMED and asked him to review my case, he agreed, and then agreed to see me for a consult. I was lucky enough to be seen for a real second opinion at Vanderbuilt. They ran tests and communicated back with my doctor in Charleston. If you can afford it, I HIGHLY recommend Vandy. I don't know if you can call Vandy and get in without being accepted. I hope you can. You aren't alone, it just feels like it.
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