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Posts posted by snakeshoes

  1. The chest discomfort feeling sounds similar to what my wife goes through. She describes it as a feeling like it's not hard to breath, but it's hard to make the muscles and bones of her chest move when she wants them to. Hers is more drawn out and less episodic than what some of you are describing though.

    One interesting bit of insight that we got the other day from her neurology visit is that her breathing tends to be more rapid and shallow than normal. Because of this, the CO2 level in her blood is lower which changes the pH of the blood and reduces its ability to carry oxygen which tricks the brain into thinking she can't get enough air so she breathes faster which perpetuates this cycle. He thought it was very likely just another symptom of the autonomic system being out of kilter and that the chest discomfort could be genuine muscle discomfort from overuse or a trick of the nervous system. The good news is that it is something that can be worked on with breathing exercises and such. Might be worth talking to your doctor about. It's called (not surprisingly) hyperventilation syndrome if you want to Google it.

    I wouldn't be at all surprised, knowing how strangely the brain can be wired, that the anxiety and 'get up and go somewhere' feelings are some how related to the brain getting screwy signals telling it you're not getting enough air. It could also be why walking around helps it - it changes cell metabolism which puts more CO2 in the blood while also changing your breathing rate.

    Just a random thought. It could be that what you're experiencing has nothing to do with this and I'm just playing a decent game of pattern matching unrelated things. Still, worth a look.

    Good luck and be well.

  2. Wow! If I didn't know any better, I'd swear you were telling my wife's story almost exactly. I'm sorry that you had to find your way here, but this is a very good place to be if you have to. My wife has gone through a lot of similar problems and difficulties with the medical system - everyone tells us how lucky we are to be in Boston with the best hospitals in the world, but they never seen to figure anything out.

    I'm afraid I'm not going to be much help with looking for a diagnosis as we're currently lost in the same forest you are. However, I'd suggest pushing for MRI scans of her spine if they haven't yet and haven't found anything in the brain as some nasty things can be caused by problems in the spinal column.

    As for medical specialists, my wife and I are waiting to get in to see Dr. Fischer who has a local reputation for being a guy who likes to figure out strange/difficult cases. His address is 830 Main Street, Melrose, MA. He's a neurologist and comes highly recommended. A quick Google search should give you his phone number as I don't have it handy here at work.

    I can really sympathize with the difficulty of balancing all the issues of life as I'm going through the same thing right now. Feel free to PM me if you want to talk coping strategies for work, home, life, and everything or we could start a new topic here.

    Best to both of you.

  3. Tammy,

    Don't feel alone. Since January, my wife has not been able to leave the house for anything more than a doctor visit. In that time, she has varied from being able to walk around the house and take the dogs out in the yard unassisted to needing a cane to get around and needing me to come home in the middle of the day to walk the dogs.

    True, her mobility problems are not as bad as yours currently are, but we got very close there for a while and I've seen others on here who are in a similar boat. Everyone's on a spectrum of symptoms and sometimes it can feel like you're the only one feeling bad right now because people come here to share their victories as well as their problems. If nothing else, this forum as reassured me that my wife and I aren't alone in this and that the adjective "typical' really can't be applied to this sort of disorder. Hopefully you can take that same reassurance.

  4. This thread seems a little strange to me as the attendance policy for most of my classes as an undergraduate was "the class is so big no one will miss you if you're not here for the entire semester, but it's your job to pass the exams at mid-term and finals". In short, no one took attendance or anything like that. Now that I'm in graduate school and have some smaller classes, they do take attendance, but it's still rather informal. I guess they have my money either way and it's up to me if I use the service they are providing.

    Now, in the workplace I can see it mattering more because then my employer needs to get something (work) out of me instead of the other way around.

    The director told me it was my right to chose to disclose or not to disclose to my teachers. However, if I disclose, I am on my own if the discriminate against me. In my opinion, I should tell my instructors about my condition. I already have the paperwork from the disability office to back me up. I doubt any of my teachers are prejudiced against people with POTs! However, I really do not know what type of services to request from the disability office and how to go about talking to my teachers. Does anyone have any advice?

    Here's what I did with my professors during the past three semesters of grad school. I made an appointment to meet with each during office hours or immediately after class (or conversed via e-mail in the case of one) and explained that my wife had a chronic health condition that goes through irregular periods of worse and less worse symptoms. I explained that, in some of those cases, it would be necessary for me to miss class on very short or no notice if she was having a particularly bad day and needed me at home for health and safety reasons because of the illness. I assured each of them that I would try to keep such absences to a bare minimum and that I would be very proactive about letting them know if I felt like I was slipping academically.

    I asked each of them if they would be able to meet me half way by allowing me to submit assignments electronically if I was not able to be at a class when an assignment was due (provided I e-mailed it on the same date) or to take make-up exams should I need to miss an exam. In return, I offered to provide documentation should they need it for their records to justify to the university why they were letting me take make-up exams.

    So far, it's worked well too be up-front with them and clear about my limitations. Also, in all such cases, I have not had to go into detail about the exact nature of my wife's illness or symptoms. Hopefully a similar approach will work for you and you'll have a good semester at school.

  5. Congratulations! You've uncovered one of the aspects of your illness. That's a huge hurdle in itself. Good luck with your new meds and water intake...And buy something cool for yourself with all those saved TP $$.



    Don't worry there. If it means I'm making less than daily trips to the grocery store for cases of water and Gatoraid, I'll be buying her something nice with the savings too. :)

    The doctor was great today, but I think we confused him a little. Clearly, he thought he was delivering bad news and wasn't prepared for us to be so happy to hear it. Finally hearing "the test was clinically significant" will do that to you though.

  6. I think this story could be a little biased.

    A little biased?! Did you see the site the story's from? That place is full of more crackpots and conspiracy theorists than you can shake a stick at. I believe there's something on there somewhere about FEMA ordering millions of plastic coffins delivered to concentration camps in the US in preparation for the illuminati plot to reduce the global population. In short, a lot of fear mongering.

    The facts are that the Swine Flu in 1976 (which is not the same virus as is currently being called swine flu today) prompted mass vaccinations. Any vaccine has a small (but measurable) risk of an adverse outcome just like there's a small chance that any person here could have a bad side effect or allergic reaction to a new medicine prescribed for POTS symptoms. In 1976, this meant that about 40 million people got vaccinated and, of them, 500 got Guillain-Barre syndrome and 25 died. Yes, that's more deaths than were attributed to that strain of the flu that year. Still, the simple math is that that's about a 1 in 800,000 chance of developing Guillain-Barre syndrome from the vaccine back then compared to a 1 in 700,000 risk of being struck by lighting. The risks are not specifically known for today's vaccine as not enough people have it yet. Given that regular old seasonal flu kills 250,000 to 500,000 people every year, I think that might be a risk worth taking.

    Also, it's important to note that CDC routinely sends out such warning/reminders to physicians as these possible problems are very rare conditions and can frequently be missed by doctors who aren't clued in to the possibility because they are so rare. That should sound familiar to anyone who's played the merry-go-round of specialists trying to work out what might be causing annoying symptoms that eventually, after many wrong diagnosis attempts, are finally found to be due to dysautonomia.

    Further good reading on this and many other subjects: http://sguforums.com/index.php/topic,22365.0.html

    Bottom line, don't fear just based on a fear-mongering story. Talk to your doctor about these things and discuss the risks as each of us has our own risk/benefit equation to work out here. Also, there may be certain factors that would exclude people from getting the vaccine because they are more at risk of problems from it.

  7. Adoption is so expensive and it's unknown as to when we'd even be able to consider that option.

    I don't want to talk you out of trying to have a child any more than I would want to talk someone out of choosing not to have a child. However, I just wanted to point out that my wife and I were considering adoption for a while (before we decided to remain child-free for our own sakes as well as that of any potential child) and the cost of adoption is only a drop in the bucket compared to the cost of a child. Seriously, do you know how much money you'll go through in diapers alone in the first year? :o It's astounding.

    All that's to say that you shouldn't give up on having a child if you can't get pregnant right now there are many options and they're not as bad as you think.

    To the original poster, don't let anyone pressure you one way or the other on this. If you've been thinking about it for some time, I'd suggest scheduling a sit-down with your doctor to talk about options that are available to you and the pros/cons of each before you make a decision and move forward.

    As far as potentially meeting someone in the future who wants to have children, you still have options there too but don't feel like you have to have a child just because he wants one. Having a child or not is a major factor that can play into the decision to get married - I had a friend who called off an engagement after he and his fiancee had a frank talk about their different opinions on starting a family. They were mature enough to know that neither would be happy if either one changed his/her position (but not feelings) on the matter just to please the other. Either way, best of luck to you.

  8. So currently curled up at my feet purring like a freight train is...Polly. She is a black and white beauty. And best of all for my financial resources, since she is a rescue from the vet she is spayed and totally up to date on all her shots and vaccinations. I feel perkier already, and more motivated to take care of myself than I have in a week. So hurray for Polly!

    Sandyshell, I'm so sorry to hear of your loss. We have two dogs that are our little furry children so I know what you are going through. I know it feels too soon, but I'll echo your "hurray for Polly!" Hopefully she'll help rescue you just as much as you've helped rescue her life by giving her a new home.

    With the obligatory caution not to slide down the slippery slope of becoming the neighborhood's "crazy cat lady", I'd suggest that you might even want to look at getting a second kitten some time in the near future. The reason I say this is because we lost our oldest dog just before Christmas last year and I think having our younger dog around to hug was the only thing that kept my wife and I sane sometimes. It completely confused and freaked him out, but he helped us get through the worst of the loss until we were ready to adopt our new dog who came home early this year.

  9. Wow! This sounds familiar. Janey, it sounds like you're in the same boat as my wife. She's been known to utter such phrases as "I wish I could go to work and sit in a boring meeting" and "I wish I could endure the drudgery of grocery shopping". The fact of the matter is that for her, and you by the sounds of it, those tasks are just not possible at the moment. The hardest part is coming to the realization that what you should be able to do without thinking about it is now very difficult. The second hardest part is bringing yourself to ask for help with such things.

    I know it's hard as we've been down that road. My wife hasn't left the house much at all this past year except for medical appointments or very brief outings on good days. I pick up the medicines at the pharmacy, buy the groceries, cook the meals, and clean the house. We've both been very self-reliant people up to now so I know it drives her crazy not to be able to help me with these things. In fact, I come home from work some days to find she's feeling terrible because she over-exerted herself - wiping down the kitchen counters never used to be a physically demanding task.

    Take it from someone who's been there - ask for help or contract for it. It was the most difficult and awkward thing for us when I finally broke down and hired a cleaning service to come in to clean the house. I felt like keeping the place clean was the least that could be expected of responsible home owners and that "maid services" were for the rich and lazy. But, the fact of the matter was that I was trying to do everything and things were getting ahead of me and I was driving myself nuts spending all my time that I wasn't at work trying to do everything around the house. Something had to give.

    As others have said in this thread, ask for help from family or friends. Or, if you don't feel comfortable doing that, check out home delivery of groceries. It will feel strange, but it will save you peace of mind (and your health) in the long run. You can spend your energy trying to do light exercise or something else to build your body up gradually instead of halfway killing yourself getting a carton of milk.

  10. Hello everyone,

    I'm new to posting here, but I've been lurking for the better part of a year. My wife has been on a time or two. Her user name here is Shoe. We're in our thirties, we've been married for 13 years (no kids but a couple of dogs) and she's been suffering with various symptoms for the past 6 years. It was only this year (since Christmas) that things got massively bad symptom-wise, but we've also gotten closer to dealing with it. The doctors have diagnosed what's going on as some form of autonomic dysregulation but haven't specified as to a particular type, a root cause, or even a particular mechanism yet. In the meantime, we deal with the pain, fatigue, mental fog, high pulse rate, sweating, needing to drink massive amounts of Gatoraid, headaches, vertigo, and anything else that crops up. I take her to all her doctor appointments as she cannot drive and it helps to have me there to confirm symptoms or remember things for her.

    With introductions over, here are my questions:

    1. Are there any other spouses on here? It's been great to read some of the threads here and realize that she's not the only person in the world with these symptoms and that the picture does actually fit together, but I'm also looking to find others in the boat with me. I've visited over at wellspouse.org but that seems to mostly be spouses dealing with terminally ill people and a lot of end-of-life stuff that's a little too bitter and depressed for my tastes. I'm hoping to find others to share advice/support on dealing with the ways that having a wife with an invisible chronic illness throws all the rest of both people's lives into a blender of stress and frustration.

    2. Anyone out there have some good advice on dealing with the medical establishment? WE've finally got doctors that are willing to work with us, but the administration is a pain in the butt. My wife's doctor wants to admit her to the hospital to take her off all the medicines she's been prescribed over the years to manage symptoms to get a clear picture of how bad all the symptoms are and to run tests that won't be thrown off by medications. The problem is that the only code that fits for that on the insurance forms seems to be "medication detox" so the insurance and the hospital keep trying to send her to a drug treatment center instead! She's not addicted to anything and doesn't need to go to AA groups, she needs to be in a hospital with medical support in case of adverse reactions and where testing can be done rather rapidly. The worst part is that she's not well enough to put up with the stress and fatigue of fighting them and they refuse to talk to me because I'm not the patient and thus they can't discuss anything with me due to medical privacy issues. We're waiting on a healthcare proxy form to filed so that they have permission from her to talk to me.

    So, an introduction and two topic questions all in one. Anyone have any advice, suggestions, horror stories to share, etc.?


  11. I didn't think to request a generic name (my insurance only covers generic). 10 of the 90 pills in this RX were different so I picked them out. I'm still frustrated!

    Are you sure it's a different generic brand? A few times, my wife or I have had the company alter their tablets even though it's the same drug from the same manufacturer. Each time, our pharmacist has been very good about pointing out "hey, they changed the pill, it's now white and oblong instead of round and pink but it's the same stuff by the same company" or similar.

    If it truly is pills from two different manufacturers in the same prescription, I would be upset too and would want them to fix the problem and make sure that my doctor specified a manufacturer on the prescription from then on. For myself, it would just be the principle of the thing, but I know some people who are sensitive to different mixes of the carriers/binders in different brands of pills.

  12. Hi Everyone,

    My first post here. Some of you may have seen my wife on here - Shoe. She's got the dysautonomia condition (still not specified exactly what but at least we're in the right area of medicine now) and I'm just the guy who gets her to all the appointments and plays walking memory/advocate when the brain fog takes over.

    I'm sorry to hear all the stories of bad experiences with doctors who don't understand, but at least I know my wife and I aren't alone. She's been to see so many specialists and generalists over the past few years that, when they fail to see anything on a standard lab test, declare that "maybe you just have depression" instead of looking for something more. As my wife would say, not only is that insulting to her to dismiss her condition, but it's VERY insulting to anyone who actually has real clinical depression as it's much more serious than they make it out to be.

    Unfortunately, the only things that have worked for us are persistence and getting over the mystique of doctors. They fall into traps of thinking just like the rest of us. If you haven't read it yet, I highly recommend How Doctors Think as a good guide to getting into your doctor's head and learning some ways to prompt him/her to look down new paths. It's often very difficult to get a doctor to understand that the anxiety and depression came AFTER the symptoms and are not causing them, but it's a wonderful thing when it finally happens.

    One thing that may help practically is to bring someone else along for the doctor visit. My wife usually has me come in with her to visits to her doctor so that I can help her remember things that she forgets to talk about and so that when the doctor looks doubtful I'm there to pipe up and say "yes, I've seen this happen and it looks serious to me, she's not exaggerating to you". Even with that, we sometimes get a bad doctor who doesn't listen/understand/work with us. Then, we just have to remind ourselves that we're paying doctors for a specialized service, just like a plumber or mechanic and thus we shouldn't put them up on more of a pedestal than those other professions - especially if they're not living up the the standards of taking us seriously and providing quality service that we would expect of those other professions. We've fired a lot of doctors before we got the great ones we have now.

    Good luck and hang in there.

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