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AllAboutPeace

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Everything posted by AllAboutPeace

  1. I like this idea, blue, thanks for sharing it! You are inspiring - you all are inspiring! I will try to smile more often, too. Last week, I was at my doctors office waiting for him to come in the room. I haven't seen him for a long time, so I knew he'd be asking me the dreaded 'how are you?' question and asking for a progress update. I've grown weary of the same response. I can get up everyday, appreciate what I have and live life as it is, but I dread having to sum it up and describe it out loud. It deflates me at the beginning of the appointment. My instinct is to be positive and upbeat, but In order to give the doc a clear picture, I can't do that. That morning, I was feeling particularly awful. I hadn't been able to eat for the three previous days, still had nausea, shortness of breath and worse than usual tachy. Anyway, he came into the room and asked how I was doing. I looked at him, paused, then said, "Can I lie to you? I really want to lie about it". He smiled and told me to go ahead. So I said, emphatically, "I feel great!! So amazing!!". Even though it was an absolute lie, I was surprised at how good it felt to even say those words. Also, he got the point right away and even better, it resulted in us both smiling. And, ironically, he was more empathetic than ever before. He might just as easily have thought I was crazy. Lol. blue, the comment you made about your expression making you feel weaker, not stronger really made sense to me. I hadn't really thought about it before, but that is how I feel when I'm sitting in the doctors office answering the 'how are you' question. Weak. In a way it does feel like this illness has all the power at that moment. Well...no more...now that I've discovered how effective lying can be . {kidding, of course}.
  2. Hi foggy My doc noticed this as a symptom of mine early on in my illness. He checked me for other things, but in my case it was attributed back to dysautonomia. I was really symptomatic at the time, so I couldn't connect it with any particular symptom (like migraines). I do recall hearing about others with Pots over the years having it. It was never something I noticed myself, so I'm not sure if it still happens. I agree with others and am glad you are getting it checked out, though, especially if it's something new for you. Peace
  3. Thanks for posting, Enid! It's great to raise awareness. Chaos - I hear you! It doesn't feel the least bit "benign" when you are living it! lejones - you made me laugh with your comment "...kind of prefer my quality of life standard to be higher than "not dead" Exactly!!!! That's what it amounts to a lot of days...
  4. Ha ha - cute! I love movies too. It *is* funny to think of our Pots lives as a movie. The first thing that came to mind for me was "the Exorcist"...
  5. Wow, good idea to post that YouTube video! I never would have said I experienced this, but as soon as I saw it, I recognized it. I have it sporadically. MakeMeErised - is it possible that your worsening symptoms have something to do with your chiropractic treatments? It seems from your posts that things got much worse after that. I could be totally wrong about that, but I thought it was worth mentioning - just in case you haven't already ruled it out. Wondering if possibly with the adjustments, there is pressure where there shouldn't be or something like that (??). I hope you are able to find some answers soon.
  6. Every positive story is worth bumping for everyone to see
  7. Alison, Wow, good for you!! That is a huge amount of change in your diet all at once. I haven't taken the leap yet to go gluten free, but I still think I'll try it one of these days I know what you mean about the prep time. It can be a lot and requires more focus and planning when you have dietary restrictions. Here are a few things I have found helpful. - nuts, seeds, avocado, coconut oil, etc. are a great way to include healthy fats in your diet - (especially if you are not looking to lose weight.) They are great, as an extra boost, in smoothies. - I take full advantage of my freezer. Fresh veggies (organic) is ideal, but realistically too often the stuff decayed in my fridge because I didn't have the energy to wash/prepare it at mealtime. Frozen veggies (broccoli; cauliflower, etc) are the next best thing, nutrient wise, to fresh and is much easier to deal with. I also chop and freeze onions, green peppers, etc, or combinations for spaghetti, etc., so I just have to toss them in the pot or slow cooker. I'll also make a few batches of soup and freeze it in smaller portions. - I love green smoothies, too, but if I had to prepare it in the mornings, it would rarely get done. So, I choose a time ( when I have the energy or help to do it), usually on the weekend, when I can wash up all of the veggies/fruit for the smoothies and put all of the ingredients for each smoothie into individual bags/container. All you have to do when you want one is take one bag out of the freezer, add whatever liquid, mix it up and you're done. Most veggies, fruits and nuts and seeds can be frozen. There is no waste that way either. You could also just store each veggie or fruit in the freezer separately and take from each container to make up your smoothie. I prefer the less work option - I find it helpful to use one of the free on-line food trackers because many of them (if not all) tell you whether you are getting enough of the various nutrients. - without meat protein, it's important to eat a good variety of foods. It's sounds like you are doing well with that already! Dairy and eggs are a good source of protein- if you are eating those. The protein from veggie sources are generally not 'complete' proteins (meaning they are missing at least one amino acid), so you need to make sure that you are getting those missing ones from other food sources. It's not usually a problem if you are eating a variety of foods and they don't have to be eaten in the same meal. Quinoa is a complete protein, so it's great that you are eating that already. - This is a great website for food analysis http://nutritiondata.self.com . You just have to type in whatever food you want in the search bar at the top of the page. It will give you options to narrow it down (raw/cooked/salt added, etc) then when you select that, it gives you your analysis. It will tell you the glycemic load, calories, inflammation factor, fullness factor, etc. It also tells you the protein quality - so it will tell you which amino acids are missing and give you some examples of foods that will provide the missing ones. *for some reason I can't get the full analysis on my tablet, so you may need to look at it on a computer. I hope you find what works best for you
  8. Hi Anne, I'm sorry to hear that your daughter is having a rough time. The unpredictability of Pots is soo frustrating. Something jumped out at me when I was reading your post. Just disregard if you are already aware of this You mentioned that your daughter is taking both Florinef and Licorice root. These two are generally not recommended to be taken together. "Generally, you should avoid or limit the consumption of licorice if you are being treated with fludrocortisone for more than just a few days." "MANAGEMENT: Patients receiving prolonged corticosteroid therapy should avoid or limit the consumption of licorice-containing products. Even relatively moderate doses of licorice may be problematic in susceptible patients when ingested regularly for prolonged periods." http://www.drugs.com/interactions-check.php?drug_list=1100-0,2383-0 Part of the problem is that both of these have the potential to lower potassium. Hopefully her docs are keeping a close eye on her levels.
  9. Wondering how you're doing, too... I hope everything went well
  10. I have significant with claustrophobia too. A radiology tech suggested to me to put a facecloth over my eyes and put it on before they move you into the scanner. I did that and do think that it may have helped. I had to really focus on the music they were playing and do meditation/self talk to help me get through it. The techs doing the scan told me I should have gotten something (Ativan, Xanax, etc) to help me through it. When my doc scheduled me for a second one, he wrote a Rx for me. It's fairly common for docs to Rx 'relaxing meds' for people, with claustrophobia issues that need MRI's. I did get through the first one without meds, but I probably wouldn't do it again without meds. I think it depends on how significant an issue claustrophobia is for you. The face cloth over your eyes may be enough to help.
  11. You will have to be still for the MRI. I had a persistent cough on my wedding day and had to keep sipping water, too. My friend (a nurse) told me to take Tylenol/acetaminophen to ease the cough. She said she wasn't sure why it works for cough, but assured me it does. I was skeptical, but had nothing to lose and didn't want to hack and cough my way through the vows. It worked for me. I got through the whole ceremony without coughing. Later in the day, it was back in full force, but it got me through that window of time. So, that may be an option to look into.
  12. I'm glad to hear things are a little better. Saline is awesome! I'm sure it was refreshing for them to have a sober patient. Just a thought when you're talking about the eating issues - do you take Florinef with food? I remember the pharmacist suggesting I take it with food to avoid belly issues.
  13. Fainting goat, I hope you're starting to feel a little better. Have your symptoms started to subside at all?
  14. Fainting goat, I just saw your note. That sounds like a good plan - I hope the change in dosage will help you feel better!
  15. I have not had issues with potassium at all since starting Florinef, but that may be because of the lower dose. I did have issues with low potassium when Pots hit, but not since Florinef. My blood pressures have only raised within 10 points (both systolic and diastolic), which brings me up to better levels. I don't know how long you've been taking it, but for me, it wasn't until the fifth week that I felt maximum benefit. Then when I stopped and started again (to try Midodrine) it took 6 weeks to maximum benefit. So it can take some time. From what I understand, that is typical. I did start noticing little improvements up until that point, but not really significant until it fully kicked in. I know the trial and error part of things can be very frustrating at times and feeling awful in the process isn't fun either... It is worth it when you get it figured out though!
  16. Fainting goat, I'm sorry that you are feeling so awful! My experience with Florinef is that the dosage needs to be just right. We are probably all a little different in what works for each of us. I've experimented with the dosage a lot over the past year and a half and stopped for a month in between (to try another med). The right spot for me seems to be .1. If I go even 1/4 of a pill higher I get lots of headaches and bloating, but at .1, I have no side effects - only the benefits. That 1/4 of a pill makes a huge difference, so I can't even imagine what .3 would feel like! That is quite a high dosage for Pots, typically the guidelines indicate up to .2. I have heard of a few people being on higher dosages because of their individual situation, so maybe you fall into that category. I will bump a forum poll on members dosing amounts, in case you haven't seen it - just to give you an idea of what has worked for others. It's a good sign that you saw benefits in the beginning. Were you on a different dosage then? I hope you are able to figure out what works for you!
  17. Hey, That's great! I'm glad things are going well for you so far. I think it is probably helpful that you started low and are moving up incrementally. I had a few little adjustment effects the first week, but maybe because I started out at .1. It's a good sign that you are seeing some positives already. I had minor improvements the first week and full effect after 4 weeks. Fingers crossed here for you, too!
  18. Andy, I don't recall ever hearing about Florinef lowering HR. I did have that effect from Midodrine, but not with Florinef. My resting HR is low - averages right at 50, but it's been in the 40's sometimes while up and around and sometimes 'sticks' there - even exertion will not help. That lowering of my heart rate over time happened without me being on any meds at all and long before taking Florinef. Interestingly (& thankfully ), I recently started Wellbutrin and it has raised my resting HR and blood pressure and as a result is giving me more energy.
  19. Florinef helped me with lightheadness, dizziness, fatigue, visual floaters, cognitive function (the ability to process information), helped with mornings to get me out of bed (prior to that I was completely lethargic in the mornings), helped me stay on my feet longer, increased my exercise tolerance, gave me back the ability to drive - which I hadn't been able to do for 9 months since onset. I can't give you an answer on the standing HR because I think I had stopped monitoring it while upright by then, so I don't have the before and after comparison. I never had BP spikes on Florinef. It raised my resting BP within a 10 point range, so 90's/50's to averaging100-110/60's. A few things I've learned...(based on my own experience) * dosage needs to be just right - I've adjusted dosages several times 0.125, 0.1, 0.075, 0.05, with drs approval to do so. Too little and it's not enough to be effective over time and too much brings on headaches and bloating. *adjusting dosages, either up or down, needs to be done incrementally to avoid side effects. *it took 4 full weeks to see maximal effects for me. *I did have unpleasant side effects over the span of the first four or five days while my body adapted to the med - extra dizziness, mild abdominal discomfort, extra heart fluttering and a worse-than-usual headache. When I had the headache, I took half my dose the following day and my headache resolved. The next day I went back to the initial dosage (0.1) and the headache wasn't an issue again. Starting out at a lower dose may help with those early adjustments. Florinef definitely improves my quality of life and when I stopped it for a month last summer (for an unsuccessful trial of Midodrine),I couldn't wait to get back on it. My only regret is that I didn't try it sooner. It definitely doesn't work for everyone, but when it works it's really helpful.
  20. I get this too. You described it really well "like a swelling in your chest that just explodes" because it feels completely involuntary. I have noticed, at times, it coincides with my HR going into the 40's and sticking there for a bit. Other times it's just very brief then back to normal. I've had it happen while resting, but for me it happens more when I'm up and around. In my case, it seems dysautonomia related because I never had this before.
  21. I understand your frustration with your doc for making a comment like that. I always think - would they give up that easily if it was their mother/daughter/significant other, etc. ?? I think not! Or if they, themselves, felt what we feel for even an hour they'd certainly be motivated to action then. Here is an article from 2012 - a brief overview of Pots. It talks about volume expansion. For me, extra salt and water was helpful and IV saline was helpful (on the occasions that I had it); so, it was assumed that I had issues with low blood volume. Florinef helped me to hold onto those fluids and I had improvements in many of my more extreme symptoms. It's very individual though and while it works for many patients, it doesn't for others. There are some patients in which salt may not be recommended, so it's best to check with your doctor for approval based on your individual situation. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/ I did gain the weight back over the next several months. I think the salt/water was helpful to get my body somewhat stabilized and back to my baseline weight. I went through a lot of Boost (meal replacement) for awhile. Feel free to PM me if there is ever anything I can be helpful with
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