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Posts posted by Elfie

  1. I generally don't have an issue with this but occasionally I will have a bad period or episode that will really freak me out (fainting and then not regaining consciousness, loosing time) which usually happens only a couple of times a year. Unfortunately I don't have anyone that can be with me, so I just have had to deal with it. It can frustrate me when people in my life try to impose limits on what I do because of my health, since I often end up in situations where I could be in serious trouble on a regular basis at home, but the people I live with and other people that care about me can't be bothered to come home on time, keep in touch, or stop in to check on me.

    It does keep me from moving away from my family though. I've passed on jobs because I would be a few hours too far away from family with no support system with this illness. I was particularly devastated when I got passed over for a contract renewal at my last job because the living situation was very unique (essentially living on company property nearby work, with a support staff that was responsible for taking care of regular services like snow removal and "emergencies" like transportation breakdowns, lockouts, and tracking down people not showing up at work, and a caring boss). Having that well-developed support system and people that care and are guaranteed to come check up on you would be essential for me to be able to move away from my family again. I had a horrible episode where I fell in the shower and laid there for a very long time and then wasn't ok to drive when I last lived alone, and another time when I had a dead battery in my vehicle and no one to call to help me (I couldn't walk to a place nearby, definitely couldn't carry the battery, didn't have access to public transportation, and didn't have a friend with a car to call).

  2. Linj-- that is really tough. I can't imagine trying to do all you are doing. I was in the position of being a full-time student trying to finish my degree, maintain friendships and a relationship, plan a wedding, and deal with POTS. I can't say I have good advice, since I wasn't able to do it. I did finish my degree with a lot of difficulty (it was worth it) but I eventually couldn't live up to people's expectations and most of the demanding relationships went kaput and I got very ill. I've had to take a different approach.

  3. This is a hard one because I am a very fit POTS patient compared to many and never quit exercising or being active and continued to work or go to school. I do faint, but over 5 years I've gotten quite good at compensating and sensing/avoiding faints, at least in public (I find it harder to do at home where I "risk" more to keep my family at a temp they can stand, walk around despite meds being at their lowest, shower, and am more relaxed).

    That said, I've almost given up on going out and doing things only to spend time with other people or for enjoyment. Standing and going out still makes me sick and it has gotten to the point that I no longer am enjoying myself because I walk around miserable or out of my head the whole time I am out. The cognitive stuff for me kills it, because I have issues processing what I am seeing/experiencing when I am out of it, and therefore am not enjoying things or sensing much of anything. I also can't form opinions or hold a conversation when I've been standing. It is super difficult because no one can see why I'm not enjoying myself and I just seem like I am acting aloof, bored, ect.

    If you find yourself not enjoying yourself or not wanting to go out or always missing out on things (really hard when you are a young person that shouldn't have to miss out on experiences), I would be tempted to take advantage of aides if it means that you can do more.

  4. I'm having a bit of this issue. I've recently ruined a date and an outing with my mother because they could tell I was not enjoying myself, despite trying to make the best of it. I feel bad, but I've also gotten to the point where I'd rather not go than to spend the whole time miserable and feeling extra badly because I can't help make decisions or keep up conversation. Either way I have to be the "no fun" person, but at least one way I don't have to feel extra sick.

  5. Ugh! I can totally relate. I hate getting told about how grateful I should be because I'm functional enough to get out and do things! I don't go and do things I enjoy because I don't have the support there (because I'm not sick enough) to help keep things "more ideal" and allow me to enjoy them. Sure, I technically could probably go to a museum, but I don't SEE anything. I walk around sick, trying to keep from falling down or puking, I sway and I have tunnel vision and my brain sits there and screams "zombie zombie zombie-- PAIN PAIN PAIN". I don't enjoy things and it has nothing to do with my mindset-- I'm getting very little sensory input through the fog of low BP and have the "extreme discomfort and danger" siren going off in the forefront the whole time.

    I'm literally out of my head, not experiencing the things I see and feel and I am not likely to have memories of them either . . . but because I am physically present going through the motions or seem fine others don't seem to get it.

  6. I do go swim/soak in the hot springs or sit nearby. There are tons of natural hot springs that are undeveloped (but those tend to require a bit of a hike and can be very hot) and then we have some that have been turned into resorts. I like to go to the resorts because they have the temperature posted and keep pools at different temperatures by monitoring how quickly the water cools and adding more natural spring water as needed to maintain the temperature. It seems counter-intuitive to go sit in a pool of hot water with POTS, but there are plenty of pools that are on the cooler side (more like a swimming pool temp, or a warm but not hot bath) Also, I find I can tolerate the hotter stuff for a short while because 1/2 of my body is still experiencing the 34 degree winter air. The pools also tend to heat up the rocks and air around them a bit, which means I can sit on lay down on the side or nearby and stand to have skin exposed to the sun rather than being bundled up. I always bring a friend just in case I would get dizzy or feel faint, but the staff is pretty experienced with people overdoing it and the signs/people fainting (this is the only place where you are normal if you act POTSY) and there is always a cold shower or cold pools or at some places the river nearby to quickly vaso-constrict if you need to.

    I also know a lot of people have muscle or joint pain relief and relief from dry winter skin or skin conditions because of the mineral water and heat.

  7. Sorry that you are dealing with this. I went through all 4 years of college with extreme fatigue and both the aching pain and sharp nerve pain (got so bad at times that the pain itself was making me vomit). For me it was related to my ANS being out of control-- the extra stress triggers fibro-type symptoms. Stress can be regular life pressure or ANS dysfunction. On one hand I wish I hadn't stayed in school because I might have avoided some pain and stress and been taken more seriously by family and doctors and gotten answers and treatment quicker. I also missed out on a lot of opportunities that mean a lot not just to the experience but also to gaining knowledge and helping to get work.

    That said, Is it your last semester or are you mostly done with this semester? If so, I would really try to battle it out. These things aren't always easy to fix and pushing for a short time beats out having to come back, or not being able to come back for 1 semester. Life tends to only get crazier and it is really hard to go back to school.

  8. I've had issues with this, you can also get a antibiotic in tube form that you mix with warm distilled water to use in a neti pot. Last year I only had 1-2 sinus infections, but the year before that I had chronic infections for almost 9 months. It was a huge drain. Finally after lots of antibiotics (including very strong ones) and MRIs/catscans and getting scoped I passed a huge blockage that the ENT swears wasn't there. Since then I've been doing better with the sinus infections, but on the downside I possibly have damage to my sinuses or septum which has caused me to inadvertantly make strange sounds.

  9. I've never had an issue with anxiety or panic and for the most part you could have put me in a dangerous situation in the past and I'd be the calmest person (alert but calm) there. There are a couple things that used to make me nervous as a child that no longer make me nervous but still bring up all of the unpleasant symptoms of nerves now that I have POTS (talking on the phone/making "official" phone calls can cause cold sweats and shaking, for example).

    I was always an extremely happy person, and for the most part laughing, joy, and excitement still are all mostly positive emotions that don't bring up many symptoms, but can occasionally cause crashing later. Sexual-type excitement can cause painful flushing, shaking, ect.

    For me sadness and anger are the biggest deals. This is the type of stress that affects me the most. Sure, the "I'm busy with more things than I can possibly do" stress is hard on me as a POTsie just for the exhaustion factor, but emotional stress is the worst. Two of my worst flares and my most recent flare were caused by emotional hurt-type stress. It is one thing to be able to put stress and bad things into perspective as part of life, but when you are dealing with death or people that are supposed to care about you significantly or constantly hurting you it is very hard to separate yourself from it and POTS can really impact normal coping mechanisms, IMO.

    Midodrene seems to be related to how quickly anger or hurt flares up in me. I'm getting very good at holding my tongue until I can cool down or process what I'm feeling to make sure it is truly justified and not just a flare. On one hand, this is positive since I'm not hurting those around me, but it also means I'm not cutting things off at the pass when someone does something uncalled-for to me. This can leave me with emotional hurt that has gone un-aired while the other person has moved on.

  10. It is possible to suffer from Seasonal Affective Disorder or non-clinical forms without being deficient in Vitamin D. These disorders an the non-clinical forms affect mood and fatigue/energy. Docs often treat patients with light boxes, but they don't work for everyone--- I have family members that aren't vitamin D deficient, but suffer from SAD. One in particular is under doctors' orders to tan in short increments often. I live at high elevation in a state where it is almost always sunny and definitely DO NOT have vitamin D deficiency (I get my rays for Vitamin D production just from taking my dogs to potty!) but experience a similar boost. Here in CO I often go to the local hot springs to get sun without freezing during our long,cold winter. The strength of the rays matter to me, when I lived somewhere lower in elevation I felt an increasing need to strip down and get some sun even though it was freezing!

    However, I would warn you about going somewhere reputable-- I know some places don't change their lamps enough to keep them producing the type of rays needed to produce vitamin D-- some are just baking you and causing damage. Also, as POTS patients you probably don't want to visit the standing beds, but horizontal beds need to be cleaned really well to avoid spreading infections and I know some of us struggle with immune issues.

  11. Peregrine, I appreciate your reply. I really dealt with similar issues in my last relationship. Although I worked very hard to keep POTS from affecting him and what I did for him in the relationship, he did not want to comfort me when I was feeling ill and did not want to have to plan ahead when it came to things he wanted to do together or wanted me to do making me sicker in ways that easily could have been prevented. It got to the point where I was pretty sick all the time from pushing myself and then our relationship fell apart when I had to lay down the law about what I needed from him. Most of the stuff was just common courtesy or making an effort to plan ahead, but it was too much for him.

    The new guy and I aren't in a partner-type relationship yet, but we are slowly moving towards it. If at all possible I'm trying to avoid getting my feelings hurt and dealing with extra stress from another man who doesn't want to deal with POTS or isn't willing to put in the effort. I'm trying to be clear about my needs from the very beginning (or so I thought I had done/was doing) and start things off positively by not creating expectations I can't live up to in the long-term. That said, I also recognize that he has needs and things he wants from me and a life with his own stress and times when he is tired or feeling poorly. I don't want to over-burden anyone either. Basically, I'm trying to figure out where that line is.

    I'm a good listener, good sense of humor, good conversationalist, intelligent, a good problem solver, a good planner, always interested in learning, a hard worker, affectionate, give good backrubs, enjoy cooking for people (even with POTS), very caring, always thinking about other people, and enjoy getting out and doing and seeing things. As far as ladies go, I'm not particularly emotionally needy or demanding/high maintenance.

  12. I'm not a newbie at POTS/dysautonomia, but I am trying something new--- really multiple new things, since I'm also trying to find full-time work for the first time since POTS (I was a full-time student and have worked temporarily or part time since POTS).

    I was in a serious relationship when I came down with POTS and was later diagnosed; and we were together for several years while I was sick. The relationship went south, but not before practically killing me (or so it felt) with the stress and expectations that weren't compatible with POTS.

    After almost 3 years I've started a new relationship, only to realize that I really have no idea how to negotiate having a healthy relationship with POTS! In my last relationship I was always the one that had to make sacrifices and work for our relationship and I was still resented for the burden my illness put on him.

    I'd love advice from all of you that have dated, have a relationship, or have had POTS affect your marriage.

    On one hand it is very hard to maintain what feels like an "equal" relationship. On the other hand I know that even if I am not as able to make big gestures and put in the effort to be the one that always does the planning/driving ect, I have a lot to offer someone. I'm also struggling with working out how to deal with all the extra work and planning that goes with making sure I can feel decent and enjoy myself when doing things and balancing that against the desires of another person.

  13. I usually deal with shortness of breath or chest pressure and pain (for me they tend to be related) in the evenings and at night and it makes it difficult to lay down or sleep. I also have it when I'm on my feet to much or when my heart rate drops when I've been standing (like I'm moving around, I pause to catch my breath and the shortness of breath gets worse). Sometimes eating will trigger it, but not one food. Heat can be stifling and trigger it.

  14. I don't seem to have the severe GI issues (I've had bouts in the past but luckily the longest was about a month and they have never coincided with the hair loss or within a month or two of it, so I don't think they are related for me).

    But yeah, I'm not super happy atm. I have a a big picture of me prior to POTS wearing my hair naturally and you can visually see that it is almost twice as thin as it was. This week is when it really started coming out again and not only is there a significant difference looking at me, but there is a carpet of hair all over my hard floors and little piles in all the corners. My dog has been having fits because he keeps geting it in his mouth or sucking it up his nose when he is snuffling around and even folding the clean laundry means I've found hundreds of hairs on the other people I live with and in food, ect.

  15. I have issues with hair loss that docs attribute to POTS and the decreased blood flow to my scalp. When I'm under stress or in a huge flare (both which make my symptoms worse, obviously) I will have huge amounts of hair loss. The stress goes away or my symptoms lesson and it slowly grows back. Right now I am going bald, or at least that is how it feels. My hair was just recovering from my heart failure scare just over a year ago and now I am down to just slightly more than 1/2 of the hair I normally do. I've lost probably about a quarter of my hair in a week. It is probably more stressful because I'm a woman and having scalp showing and shedding long hairs everywhere is not a common look and I can't just cut it super short or shave my head--- not when I'm job hunting.

  16. Thanks ladies, I didn't mean to hijack the thread. I just wanted to make the other's feel that they weren't alone. I feel pretty much like I am in exactly the same place as the original poster (finances not withstanding-- I'm not in debt, but I never have any money of my own to do anything with and am constantly worried about how I am going to pay for medical bills and trying very hard to "earn my keep" and stay on the good side of the family that I live with and am feeling pressured to find work despite knowing that it is probably not going to be something I enjoy or in the field I worked hard to get into and will probably make my symptoms worse and further cut down on what I can do). I think it can be a very hard place to be in if you don't have a great support system. Not everyone has a loving support system that helps them get out and do things with their good days, or a home that is a sanctuary, a spouse that is willing to support them without guilt, a job with an understanding boss doing something they enjoy, ect.

    Personally not being able to make positive changes for myself and not having others that are willing to help is very hard.

  17. You aren't alone.

    I'm lucky that I have in some ways greater financial support, but it comes with a hefty emotional price and hasn't gotten me better care.

    It is absolutely crushing to have to get out of bed everyday feeling horrible and try to lead a full life work and ADL-wise. I've been able to do it for the most part, but it means that I don't have any energy left for relationships, hobbies, furthering my education/career . . . for anything enjoyable. It is crushing to be in constant physical pain and discomfort, to never do anything but work or housework or be in bed in pain and so messed up you can't even follow a TV show. To be surrounded by no one that understands, and no one that can make an effort to show they care or treat you kindly, but instead say cruel things. To be told that you aren't ill enough for disability, for help doing ADLs from partners or family, and not ill enough for more agressive treatment. Basically you torture yourself all day long every day with no hope of respite. It is all good and fine for people to say you would be better if you pushed yourself or you exercised (I've never stopped doing either in the 5 years I've had POTS, yet have no improvement) or that you need to be more positive. Yes, I'm lucky I can get out of bed. I'm an extremely positive person that has been regularly evaluated for clinical depression and I don't have it. However, standing up literally makes me sad. All the lovely things I appreciate about being alive dissapear as my senses leave me and all I get is pain and disorientation from pushing myself. This illness literally impacts who you are on a personality level as well.

    You lose everything, and no one cares because you keep getting up and dealing with your invisible illness.

    I'm a giver too, and forging new realtionships is hard for me because I've had to set up boundaries for how much I am able to give without running myself ragged. I've been dating a man for 3 months now that I am probably going to get dumped by. He acted understanding and I gave him alot, but I finally had to draw that line in the sand this past week. I haven't heard from him since.

    I currently am not eligible for disability, but have been looking for work for 9 months and haven't found a job that I could do with POTS.

  18. I've posted before about getting sick a ton since POTS and not having my body kick the bugs. My symptoms are always bad when I'm ill and particularly bad when I've got something viral. Never been a smoker, wasn't sick much as a child, rarely exposed to secondhand smoke, and with no diagnosed immune syndrome.

  19. I agree that it would be nice to have some better P.R.-- that said, innacurate P.R. that paints all POTS and dysautonomia patients as people that recover completely and fast with things like exercise or as teens that "grow out of it" could very well be more damaging to individual patients than no P.R. at all. At least prior to all these POTS telecasts and news articles, I could inform people about the condition and their internet searches would bring up places like DINET, rather than studies and articles that make light of what a lot of patients deal with.

    I personally feel like I can't be involved because I currently don't feel I can be "out" in my local community about having POTS. I work in a field where word of mouth about POTS would make employers less likely to hire me, despite the fact that I do the work sucessfully without incident with POTS. I handle delicate and valuable objects and being the local spokesperson for a disease that involves fainting would not be a positive career choice. In fact, it doesn't seem that any employer wants to hire someone that could faint because of liability issues.

    As far as POTS being serious, I have always been told that I have run-of-the-mill low blood pressure causing viral POTS that I would recover from. I'm young so lots of doctors have not taken me seriously or have grouped me with the "teens that will grow out of it" despite my case not fitting that mold. I have worked with POTS, been a student, and plan on both working and being a student in the future. I don't faint when I sit, so my doc allows me to drive at my discretion. I do faint, and am very limited in the work I can do and the conditions I can do it in and I have issues with several ADLs. I have fatigue issues, chest pain, and cognitive symptoms. I don't seem to have a genetic connective tissue problem. Many wouldn't consider my POTS serious as I am not currently on disability, don't have EDS, am not frequently hospitalized for POTS, am not bedbound, ect.

    That said, I also think there is more to be said about the fatality and seriousness of POTS. Despite having "non-serious" POTS, last January I went into Congestive Heart Failure caused by dysautonomia. Although the guidelines on CHF have recently changed to say that it cannot be "cured"-- I have seemingly recovered without permanent heart damage. Maybe this does have to do with the fact that there wasn't any "cause" for my heart not to be able to keep up with it's work except for my nervous system not functioning properly, and because the cardiologist I see caught the problem right away because I was seeing him 1-2 times a month during that time period and he corelated my sudden weight gain with an increase in fatigue and shortness of breath and knew what to test for. Maybe there is some weird dysautonomia thing that exactly mimics a build up of fluid (20 pounds worth) around the heart and lungs caused by the heart's inability to handle the workload. Either way, I'd consider that fairly serious. CHF is fatal, and if POTS can cause CHF, even in rare cases then I think that it is important that people know.

  20. I am also someone with a penecillin allergy. Docs typically give me a z-pac for things like bacterial sinus infections, ear infections, and strep. I don't really have any issues with the z-pac and POTS symptoms, nor other common antibiotic issues like nausea. However, I am surprised that they gave you it for pnemonia. Around here, they typically go straight to the "harder" antibiotics for something like that. It is also possible to have a doc prescribe azithromycin so that a person take the same number of milligrams as a z-pac but over 3 days instead of 5, which sometimes will knock out stubborn bugs-- we have done this for me before. I have had both doxy and cipro because we weren't able to eliminate chronic sinus and staph infections I was having with the 'zith. Both doxy and cipro are really hard on your system, or they were on mine. I dealt with nausea on both, as well as a drop in BP and increased POTS symptoms. I believe I also had minor issues with Clindamycin-- more than with a z-pack, but it would have been worth it to me if it had taken care of the infection, in my case it didn't. Of course, I was doing oral.

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