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Everything 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
  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 s
  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
  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
  7. I've had many experiences with sticks taking 30 min and IVs taking multiple hours, a neonatal specialist, the area being warmed and numbed, ect.
  8. 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 th
  9. 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 stran
  10. 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
  11. 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
  12. 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. Mo
  13. 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
  14. 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.
  15. 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
  16. I don't have lung issues per say, but often feel like I can't take a deep breath, have shortness of breath, am being crushed, or am drowning in my own fluids and have pluresy-like pain.
  17. 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 beca
  18. 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 har
  19. 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
  20. 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.
  21. I have an expensive omron (wanted to type O-moron) bicep cuff machine. Stupid thing, won't take my stand bp if it is low. Works fine on other ppl.
  22. 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 inv
  23. There are also compression stockings that essentially have a built in garter belt. Basically they are like a pair of waist high, but have a large amount of the "underwear" area cut out, leaving behind the waist and hip area of the stockings (similar to apair of chaps).
  24. 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 stubb
  25. Rama-- I think she is reffering to autonomic dysreflexia-- it is easy to look up, a common issue amongst high paraplegics and quadreplegics or those that have spinal cord injury.
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