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Rachel Cox

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About Rachel Cox

  • Birthday 09/25/1974

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    Auckland, New Zealand

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  1. From the editor: The following is a turn from the style and intent of our usual content . This is a creative writing piece about the sensations and experiences of one woman living with dysautonomia I hear footfalls, voices. Light shifts the shadows on my eyelids. But I cannot move. I am suspended, somewhere between asleep and awake. Is it night? No, I can feel the warmth of the sun, a band of warmth pinning my legs to the bed. It slides through the window, deceptively light. How does it imprison me here, a concrete statue, prone? I try to lift my head but it won’t move; my mouth will breathe in, breathe out, breathe in, but will not make words. I cannot cry out. I try to calm myself by listening to my heart; it is panicky fast, I try to slow it down with my mind. Count it out. Calm down. Settle, girl. You’ll be alright. I listen, numbed, to the sounds of people who cannot hear me. The air is heavy, thick with exhaustion. Gravitational pull beckons me deeper into the mattress, further into the earth, I am sure I can feel the world turn, I am deep enough in to hear the thrum and lullaby of life itself. I acquiesce. The grey forgetfulness of sleep is soft around me. The morning waking is difficult, always a transition of struggle. At first I become aware of myself again; the feel of the sheets against my skin, the ambient sounds around me. I check to see if I can move. And then I am wading out into the waves of waking, pushing my legs against the tide of light and life. Daylight foams around me. The cold air smarts against my skin. I am fighting to stay upright on the shifting sands, eyes open, forging forward into the wakeful time. Into the white light of morning. “How are you today?” he asks me, hopeful. Hopeful that today might be one of the good ones. I always know, in this moment. If the waves of wakefulness break high and the sea spray drowns out his voice, I know that I am in the path of the storm for another day. If the seas are calm, and pushing into the day is easier, I might smile, roll onto my back and float into the sunshine. Becoming vertical takes time. Walking the short distance to our bathroom is like controlling a marionette from the rafters. The strings are loosely tied and my gait comical. My legs are heavy and unresponsive in the mornings. The messages seem to take so long, the feet on the ends of my legs don’t feel like they are owned by me. They drag. I walk by employing a swing and heft of the hips. I keep my head down, hobbled over, reaching for the walls, doors, furniture. As fast as I can I swing and shuffle myself into the bathroom and sink down onto the toilet seat; head on the bath to still the oscillations of vertigo and nausea. I have learned to take the mornings slowly. To find the gentlest pathway into the upright world. It isn’t easy to stay afloat among the surging tide and rush of a busy family. They are preparing to cast off from the jetty, speed boat engines revving. I tread water, take my medications, open my arms for morning snuggles before the children eat and dress. I manage my horizontal hairdressing duties and tie adjusting. I am the director of movements while my husband shoulders the load. I am the strident voice of mother; teeth-brushing reminder, final inspector. And then they are gone and I sink into the peace of my quiet house, letting the day arrive on my time scale. Letting what will be, be. When finally, my head has given me more clear stretches than dizzy, I swallow back on the nausea and swing my legs out of bed for the second time. I sit there for a bit, bracing for the stand. I am surrounded by the water. It swings strong around my legs, trying to pull me under. I kick, cycling against the current. I will not drown in the wake. Not this day. Image credit: Ivan Aivazovsky (Armenian Painter) 1895
  2. From the editor: The following is a turn from the style and intent of our usual content . This is a creative writing piece about the sensations and experiences of one woman living with dysautonomia I hear footfalls, voices. Light shifts the shadows on my eyelids. But I cannot move. I am suspended, somewhere between asleep and awake. Is it night? No, I can feel the warmth of the sun, a band of warmth pinning my legs to the bed. It slides through the window, deceptively light. How does it imprison me here, a concrete statue, prone? I try to lift my head but it won’t move; my mouth will breathe in, breathe out, breathe in, but will not make words. I cannot cry out. I try to calm myself by listening to my heart; it is panicky fast, I try to slow it down with my mind. Count it out. Calm down. Settle, girl. You’ll be alright. I listen, numbed, to the sounds of people who cannot hear me. The air is heavy, thick with exhaustion. Gravitational pull beckons me deeper into the mattress, further into the earth, I am sure I can feel the world turn, I am deep enough in to hear the thrum and lullaby of life itself. I acquiesce. The grey forgetfulness of sleep is soft around me. The morning waking is difficult, always a transition of struggle. At first I become aware of myself again; the feel of the sheets against my skin, the ambient sounds around me. I check to see if I can move. And then I am wading out into the waves of waking, pushing my legs against the tide of light and life. Daylight foams around me. The cold air smarts against my skin. I am fighting to stay upright on the shifting sands, eyes open, forging forward into the wakeful time. Into the white light of morning. “How are you today?” he asks me, hopeful. Hopeful that today might be one of the good ones. I always know, in this moment. If the waves of wakefulness break high and the sea spray drowns out his voice, I know that I am in the path of the storm for another day. If the seas are calm, and pushing into the day is easier, I might smile, roll onto my back and float into the sunshine. Becoming vertical takes time. Walking the short distance to our bathroom is like controlling a marionette from the rafters. The strings are loosely tied and my gait comical. My legs are heavy and unresponsive in the mornings. The messages seem to take so long, the feet on the ends of my legs don’t feel like they are owned by me. They drag. I walk by employing a swing and heft of the hips. I keep my head down, hobbled over, reaching for the walls, doors, furniture. As fast as I can I swing and shuffle myself into the bathroom and sink down onto the toilet seat; head on the bath to still the oscillations of vertigo and nausea. I have learned to take the mornings slowly. To find the gentlest pathway into the upright world. It isn’t easy to stay afloat among the surging tide and rush of a busy family. They are preparing to cast off from the jetty, speed boat engines revving. I tread water, take my medications, open my arms for morning snuggles before the children eat and dress. I manage my horizontal hairdressing duties and tie adjusting. I am the director of movements while my husband shoulders the load. I am the strident voice of mother; teeth-brushing reminder, final inspector. And then they are gone and I sink into the peace of my quiet house, letting the day arrive on my time scale. Letting what will be, be. When finally, my head has given me more clear stretches than dizzy, I swallow back on the nausea and swing my legs out of bed for the second time. I sit there for a bit, bracing for the stand. I am surrounded by the water. It swings strong around my legs, trying to pull me under. I kick, cycling against the current. I will not drown in the wake. Not this day. Image credit: Ivan Aivazovsky (Armenian Painter) 1895
  3. A couple of years ago, I was at a function. I was talking to a doctor acquaintance about life, the weather, and Dysautonomia, as you do. Well, when you are me, you do! I never, ever pass up an opportunity to answer questions about Dysautonomia. Because the more people who know; the less people will suffer through years of mis-diagnosis and lack of understanding. If knowledge of this spreads through the community (both the medical community and the general community) there will be greater understanding towards people who suffer from it. It’s one of my missions. This guy, like many doctors, was a very intelligent person. He asked probing questions, wanted to know who we’d seen and what the current situation was. He was sympathetic about the road we had travelled. He mused that ‘medicalised’ people like me were sometimes seen by doctors as a concern, especially when they look well. Looking ‘well’ is a bit of a feature of Dysautonomia, so not something we can change. I was interested in his reference to ‘medicalised’ patients. The term is not something I had encountered before, or heard from others about. The attitude he spoke of was familiar to me, but not the expression. Have you watched a doctor ‘think’ this before? A patient who talks the talk? Who has been googling? (insert eye roll) Could it be a case of somatisation? Somatisation is when people believe something is physically wrong with them for which there is no definitive evidence. Psychosomatic illness. Hypochondriasis. There are a range of psychiatric disorders which follow this pattern. Sadly, for people with Dysautonomias, many of the symptoms commonly present in somatic disorders are like our own. Dizziness, chest pain, abdominal problems. This is why, for many people with Dysautonomia, the road to diagnosis may have included earlier mis-diagnoses of anxiety, depression or somatisation before further investigations uncovered the facts. Recently, the term ‘medical literacy’ came up in my readings. It reminded me of that social encounter with the doctor and his word ‘medicalised’. I thought I would look into it, because people like myself, who have been ill for a long time, do develop a different type of jargon than the average patient. We use the correct medical terminology for things, because it is the most efficient way to explain what has been going on. It seems far more practical to fast forward through all the translations between doctor speak and layman’s terms. Especially when consultation times are squeezed into just a few moments, a few moments to describe a month’s worth of symptoms. Also, have you noticed how many letters there are in medical words? Phew, acronyms were invented for a reason! We also talk with one another online. Among the patient community, the use of acronyms and medical jargon and abbreviations is commonplace. So much so, that new members take a while to learn the lingo. For the newly diagnosed Dysautonomiac, to become medically ‘literate’ means incorporating a knowledge of the autonomic nervous system, the various types of Dysautonomia, the range of treatments or medications used for various types (and how they work), recent research findings, the big players (in terms of doctors and medical institutions) and an understanding of the very wide range of symptoms that can be implicated in our conditions. In New Zealand, ‘Health Literacy’ is the term we use in place of Medical Literacy (I believe the latter is an American term). The Ministry of Health’s report into health literacy in this country defines it as: -- Kickbusch et al., 2005; Kōrero Mārama, 2010 Just like literacy with language, being ‘literate’ in a medical, or health care, sense, means being able to respond to the data provided to you in an analytical way. Literacy really means being able to make sense of information in context. For people without science based or medical degrees, it can take some time! For me, learning what was wrong with me felt like floundering in a morass of confusing information; I was at a loss to know how to even begin to ‘make sense’ of my diagnosis. My cardiologist could tell me about what was happening to my heart, but this was only part of the bigger picture …and it didn’t include why it was happening to my heart. My artsy brain wanted the philosophical lowdown! Over time, I have assimilated so much information. There is more than just the condition to understand, there is also the wider health system, the politics of the consulting room, the process by which your needs are met and the differences between our health system and that of our fellow patients overseas. I’ve seen countless conversations in various patient groups, where good information is redundant, simply because it doesn’t apply to the way our health system works here. It might relate to my condition, but not to what is possible for my treatment. These factors can be so daunting to a newly diagnosed Dysautonomiac, or anyone with a chronic, rare or invisible illness. Developing this ‘literacy’ is crucial to your health plan. Simply having the jargon without the contextual understanding will compromise your care. Particularly if doctors see you as a well-looking ‘somatic probability’ just because you can ‘talk the talk’. Your use of medical terms must be accurately supported by a contextual understanding, analytical thinking… a fully literate comprehension of the subject at hand: your health. This is a key component to getting the help you need from the professionals who are qualified to help you. Here are four ways you can improve your health literacy: Ask questions Don’t be afraid to ask. A specialist recently mentioned Occam’s Razor to me, assuming that I understood the reference. I didn’t. It’s a med school 101 reference. I was confused, so I said “Can you explain? I don’t understand …Occam’s what?”. Occam was a monk a very long time ago who put forward a problem-solving principle: “among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better”. (thanks Wikipedia for saying that better than I could remember it). He was explaining why he believed I had one disorder over another. It was the more likely choice. The important thing to remember from this story is that asking is the short cut to the understanding you need to have, particularly in discussions with intellectual giants. In my experience, most doctors like to be asked questions, particularly for clarification. Read all about it Use Google and Google Scholar, sign up for newsletters run by organisations who specialise in your diagnosis. Use the excellent resource websites that are proliferating on the web, many have sections full of pertinent research documents and medical journal articles. Follow the Facebook pages of your not-for-profit organisations; timely information is often added, particularly after large symposiums where all the experts gather to discuss their ideas. Search for blogs written by people with your condition. They will have access to information too. Read it all, even if you don’t understand it. If you like print copies, print things out, highlight, circle terms you don’t understand and find their definition. If you read something scary, suspend your judgement about its pertinence to you until you have discussed it with your doctor, other patients in your support group, or until you have identified the relevance of what you are reading. There is a great deal of pseudo-science out there that can trick unsuspecting readers. Run it by someone with more knowledge than you before freaking out. Find your Tribe Facebook and the internet abound with groups, forums and news boards that bring people with the same conditions together. Look for groups with a strong set of user guidelines. Read them and see if you agree with their code of conduct. There are some awful groups where bickering and mindless trolls like to stir the pot. Avoid those. If you find yourself in one, leave. There are much better, well run groups of like-minded people out there. It took me a long time to find a group that I consider to be responsibly administered. When you find your ‘tribe’ you will learn a great deal more from them than from any other source. The experience of other patients is invaluable, particularly with a condition that is not common, or not commonly understood. Finding your geographically relevant tribe is good too, because then all the information will relate to your experiences. Delve into your Data Get hold of your medical records. In New Zealand, you can request these from your GP and your District Health Board. Organise them into a file and refer to them. Examine your results and look for patterns. Knowing (for example) what your iron levels or heart rate has been like over time means you can discuss these things knowledgeably with your doctor. Knowing ‘thyself’ also helps you to see if there are any trends or significant changes in your condition. Why does it matter? If you, like me, suffer from a condition which is poorly understood by many in the health sector, being your own advocate, managing your own chronic condition and taking the leading role in your own health plan will be necessary. Without strong health literacy, the likelihood that you will be able to take this responsibility on will be lower. Not sure about that? This is what the Ministry of Health had to say about people with poor health literacy: The only person who will ever care about managing your health plan properly, is you. Literally. Return to newsletter table of contents
  4. A couple of years ago, I was at a function. I was talking to a doctor acquaintance about life, the weather, and Dysautonomia, as you do. Well, when you are me, you do! I never, ever pass up an opportunity to answer questions about Dysautonomia. Because the more people who know; the less people will suffer through years of mis-diagnosis and lack of understanding. If knowledge of this spreads through the community (both the medical community and the general community) there will be greater understanding towards people who suffer from it. It’s one of my missions. This guy, like many doctors, was a very intelligent person. He asked probing questions, wanted to know who we’d seen and what the current situation was. He was sympathetic about the road we had travelled. He mused that ‘medicalised’ people like me were sometimes seen by doctors as a concern, especially when they look well. Looking ‘well’ is a bit of a feature of Dysautonomia, so not something we can change. I was interested in his reference to ‘medicalised’ patients. The term is not something I had encountered before, or heard from others about. The attitude he spoke of was familiar to me, but not the expression. Have you watched a doctor ‘think’ this before? A patient who talks the talk? Who has been googling? (insert eye roll) Could it be a case of somatisation? Somatisation is when people believe something is physically wrong with them for which there is no definitive evidence. Psychosomatic illness. Hypochondriasis. There are a range of psychiatric disorders which follow this pattern. Sadly, for people with Dysautonomias, many of the symptoms commonly present in somatic disorders are like our own. Dizziness, chest pain, abdominal problems. This is why, for many people with Dysautonomia, the road to diagnosis may have included earlier mis-diagnoses of anxiety, depression or somatisation before further investigations uncovered the facts. Recently, the term ‘medical literacy’ came up in my readings. It reminded me of that social encounter with the doctor and his word ‘medicalised’. I thought I would look into it, because people like myself, who have been ill for a long time, do develop a different type of jargon than the average patient. We use the correct medical terminology for things, because it is the most efficient way to explain what has been going on. It seems far more practical to fast forward through all the translations between doctor speak and layman’s terms. Especially when consultation times are squeezed into just a few moments, a few moments to describe a month’s worth of symptoms. Also, have you noticed how many letters there are in medical words? Phew, acronyms were invented for a reason! We also talk with one another online. Among the patient community, the use of acronyms and medical jargon and abbreviations is commonplace. So much so, that new members take a while to learn the lingo. For the newly diagnosed Dysautonomiac, to become medically ‘literate’ means incorporating a knowledge of the autonomic nervous system, the various types of Dysautonomia, the range of treatments or medications used for various types (and how they work), recent research findings, the big players (in terms of doctors and medical institutions) and an understanding of the very wide range of symptoms that can be implicated in our conditions. In New Zealand, ‘Health Literacy’ is the term we use in place of Medical Literacy (I believe the latter is an American term). The Ministry of Health’s report into health literacy in this country defines it as: -- Kickbusch et al., 2005; Kōrero Mārama, 2010 Just like literacy with language, being ‘literate’ in a medical, or health care, sense, means being able to respond to the data provided to you in an analytical way. Literacy really means being able to make sense of information in context. For people without science based or medical degrees, it can take some time! For me, learning what was wrong with me felt like floundering in a morass of confusing information; I was at a loss to know how to even begin to ‘make sense’ of my diagnosis. My cardiologist could tell me about what was happening to my heart, but this was only part of the bigger picture …and it didn’t include why it was happening to my heart. My artsy brain wanted the philosophical lowdown! Over time, I have assimilated so much information. There is more than just the condition to understand, there is also the wider health system, the politics of the consulting room, the process by which your needs are met and the differences between our health system and that of our fellow patients overseas. I’ve seen countless conversations in various patient groups, where good information is redundant, simply because it doesn’t apply to the way our health system works here. It might relate to my condition, but not to what is possible for my treatment. These factors can be so daunting to a newly diagnosed Dysautonomiac, or anyone with a chronic, rare or invisible illness. Developing this ‘literacy’ is crucial to your health plan. Simply having the jargon without the contextual understanding will compromise your care. Particularly if doctors see you as a well-looking ‘somatic probability’ just because you can ‘talk the talk’. Your use of medical terms must be accurately supported by a contextual understanding, analytical thinking… a fully literate comprehension of the subject at hand: your health. This is a key component to getting the help you need from the professionals who are qualified to help you. Here are four ways you can improve your health literacy: Ask questions Don’t be afraid to ask. A specialist recently mentioned Occam’s Razor to me, assuming that I understood the reference. I didn’t. It’s a med school 101 reference. I was confused, so I said “Can you explain? I don’t understand …Occam’s what?”. Occam was a monk a very long time ago who put forward a problem-solving principle: “among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better”. (thanks Wikipedia for saying that better than I could remember it). He was explaining why he believed I had one disorder over another. It was the more likely choice. The important thing to remember from this story is that asking is the short cut to the understanding you need to have, particularly in discussions with intellectual giants. In my experience, most doctors like to be asked questions, particularly for clarification. Read all about it Use Google and Google Scholar, sign up for newsletters run by organisations who specialise in your diagnosis. Use the excellent resource websites that are proliferating on the web, many have sections full of pertinent research documents and medical journal articles. Follow the Facebook pages of your not-for-profit organisations; timely information is often added, particularly after large symposiums where all the experts gather to discuss their ideas. Search for blogs written by people with your condition. They will have access to information too. Read it all, even if you don’t understand it. If you like print copies, print things out, highlight, circle terms you don’t understand and find their definition. If you read something scary, suspend your judgement about its pertinence to you until you have discussed it with your doctor, other patients in your support group, or until you have identified the relevance of what you are reading. There is a great deal of pseudo-science out there that can trick unsuspecting readers. Run it by someone with more knowledge than you before freaking out. Find your Tribe Facebook and the internet abound with groups, forums and news boards that bring people with the same conditions together. Look for groups with a strong set of user guidelines. Read them and see if you agree with their code of conduct. There are some awful groups where bickering and mindless trolls like to stir the pot. Avoid those. If you find yourself in one, leave. There are much better, well run groups of like-minded people out there. It took me a long time to find a group that I consider to be responsibly administered. When you find your ‘tribe’ you will learn a great deal more from them than from any other source. The experience of other patients is invaluable, particularly with a condition that is not common, or not commonly understood. Finding your geographically relevant tribe is good too, because then all the information will relate to your experiences. Delve into your Data Get hold of your medical records. In New Zealand, you can request these from your GP and your District Health Board. Organise them into a file and refer to them. Examine your results and look for patterns. Knowing (for example) what your iron levels or heart rate has been like over time means you can discuss these things knowledgeably with your doctor. Knowing ‘thyself’ also helps you to see if there are any trends or significant changes in your condition. Why does it matter? If you, like me, suffer from a condition which is poorly understood by many in the health sector, being your own advocate, managing your own chronic condition and taking the leading role in your own health plan will be necessary. Without strong health literacy, the likelihood that you will be able to take this responsibility on will be lower. Not sure about that? This is what the Ministry of Health had to say about people with poor health literacy: The only person who will ever care about managing your health plan properly, is you. Literally. Return to newsletter table of contents
  5. Hi Andy. I hope the SPC will bring you some of the freedoms you are hoping for! I have had an SPC. It wasn't ideal for me and it was removed. I am now using intermittent self catheterising. For me this is better, but the male anatomy is a different situation... it sounds like you really have tried everything before this. I also want to applaud you for working towards your goal with your wife. What a beautiful thing to strive for. I sincerely hope the SPC helps you. For me the SPC was a mixed bag (pardon the pun!). It was awesome to be able to see exactly what was going on, and measure easily. It didn't fall out and was tolerably comfortable. But I did have infection problems. The infection problems weren't within the bladder but at the site. We tried lots of different ways around it but it kept getting worse until it was removed. My cousin's husband is a quad and he has an SPC, has for years. His longer term issues have been with bladder infections and blocked caths... he is a big fan of having silicone catheters only; he uses a syringe flush when he needs to. I think the key to any indwelling catheter is management. If you are on to the management you can make anything work, the urologist and nurse will be able to give you the best advice and training. I also recommend increasing your fluid intake if you are using an SPC. All the best and let us know how you get on! Keep your eye on the prize, Andy!
  6. Oh, Racer, how awfully irresponsible of them! This kind of thing makes my blood boil. If your PCP could live for a day with your bladder they would be trying a lot harder to find you some solutions. Yes, a neurogenic bladder is a neurological issue, but it is also a urological issue and any urologist should be able to consult with your neuro to find some better solutions. 'See if it goes away'. Yikes.
  7. Oh and just as an aside, I came off the midodrine because of urinary retention. Midodrine was one of the more effective drugs for my other problems and I was devastated. I am now back on it, after my body proved that in my case, the urinary retention and incontinence cycle are a symptom of my dysautonomia, not a side effect of the midodrine. Just thought I would share as it isn't always wise to throw out the baby with the bathwater... better to take a methodical approach. Just my thoughts...
  8. Hi Racer, I hear you! I also have problems with retention and involuntary voiding. I have a really great urologist who has been very helpful, so I agree with Hanice, first, find yourself a new urologist. I hope you don't mind me sharing how I tackle these problems, so you have some context for the way it is treated in our part of the world (sorry, not sure where you are from, but I am in New Zealand). My urologist had a home care nurse come and teach me self-catheterisation. When I am retaining, the pain can build to such incredibly intense levels. I know, now, when it is starting to happen. It took a while to train myself to be mindful of the signs. For me, mild headache, flank pain and irritability are the key factors. I have catheters delivered to home and a pretty good system, I made up a catherisation kit which lives in the cupboard next to the loo. Most people wouldn't know if they were visiting that me "going to the bathroom" was a bit more of a manual experience. I have got the 'knack' now and it is fast and a huge relief. I catheterise in the morning and at night and in between when I feel any of the warning signs. It has stopped me going to hospital on numerous occasions and I am incredibly grateful for having the power of management returned to me over this issue. After a while, you get used to your typical bladder volume and you can judge whether you have fully emptied or might need a return to do it again in short order. It's not nearly as awful as it seems. Having a catheter in for a fixed period of time is much riskier. I had a supra pubic catheter for a time and the issues it caused were far more destructive than it was worth. I am a huge fan of independence. When my autonomic nervous system 'swings' me the other way, into incontinence, I take a pill called 'Vesicare'. It doesn't stop the voiding altogether, but it reduces the amount of times I go in a day and that helps me to manage things. I also use continence products, there are some pretty good ones coming on the market. All in all, I feel like I have control over the management of my bladder, if not over the bladder itself. That is a beautiful thing, to feel in control, to have a system. Once you have found yourself a new urologist, ask them about the possibilities of these approaches and if they will work for you. There is hope and I know you feel really awful right now. Hope you find the answers you need real soon.
  9. Hi Amber, Parkinson's disease includes autonomic dysfunction in it's later stages, so you may well find quite a few symptoms in common with her. My specialist doc said that the odd thing about dysautonomia in my case, is that it would be an expected collection of symptoms in someone with later stage MS or Parkinsons, but I have no obvious disease to cause it. Try asking your rellies about people further back in your line, aunties, uncles and cousins. Lots of people on here have turned up interesting facts about their family health connections.
  10. You might need to get your intraocular eye pressure tested. I was on fludro and began to develop glaucoma from it. My doctor discontinued my use of it straight away. Glaucoma can make you blind so this is not a side effect to just muck around with. Have you had increasing headaches and blurriness too? Please get it tested. Any optometrist can check eye pressure and will tell you straight away if it is dangerously high. Then talk to your specialist who prescribed the fludro as soon as you have your pressure results. Take care s-pot!
  11. Hi Clair, I suspect it is the high temperature of the water. You were in for half an hour which is a long time in that kind of heat. I know I would feel all those things you mention if I spent even half that length of time in water that hot. My body just can't thermoregulate effectively and it takes a very long time to get over it. Do you have a similar experience after a bath? I suspect it is about how your body handles heat. It is so frustrating when well meaning people suggest things to help that trigger other issues. Hope you find another solution. R
  12. Hi Natops, I have found a combination of Pyridostygmine and Domperidone to be the most effective drug therapies for me so far. It's not perfect, but so much better than before. Good luck with finding what works for you, these symptoms are such a big part of the overall experience, if you can improve them, quality of life is so much better. Take care!
  13. As hard as it is, I think we have to strive for balance between the inward focus on what is wrong with us, and the outward focus of getting on with as much as we possibly can. Over the years, I have found that I have to monitor how much time I spend here, and elsewhere online, reading and thinking about research and the nuts and bolts of my condition. It's true that it is my own research that has driven the best treatments I have received to date, but I find for me, it's important to have other distractions for my mind. When it becomes all I am talking about, I take a break from the forums and pages for a while and try to focus on other things. I never get to take a break from the experience of what is wrong with me, but I have learned to practise a different habit of thinking. I think it is really good for me to force myself to push through. I do it for the sake of my kids and my man. I strive to create great memories with them, often at big personal cost, but nothing is more worthwhile. I often think that I have been given a gift. Of conscious awareness of the preciousness of health. I observe the health of my family with such gratitude and try to find vicarious joy wherever I can. Sometimes that is impossible, but it is a happier mindset than being inwardly focused. I hope you find the pathway that works best for you and get to find some happiness in there too.
  14. I know, right?! I wish someone would do a research study with a split group of dysautonomiacs, where they give IVIG to half and placebo to half and see how the dysautonomiacs respond.
  15. Charlotte, for me florinef was worse than useless. I have never hated a medication so much. But midodrine made an immediate difference to my peripheral blood flow. Midodrine and Mestinon can be given in conjunction. I have a very cautious doctor, he took some time to research and decide but felt the two together would be beneficial. So far so good! This week I taught again for the first time in seven months. It was certainly trial-by-fire as I was given a year One class for the morning. Oh my. I managed and I have to attribute that to the meds!
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