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Mare

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    medications: fludrocortisone, Propanalol

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  1. Thank You @bigskyfam and @statesof! I really appreciate you advice and support. I do take my own car, so I can leave early and on my own terms, and I always have fluids and salt with me, That IV before activities sounds great, and one doc recommended I get IV's weekly, but my current doc disagrees. I feel like I am becoming a bit burned out on putting in so much effort to do simple and not so simple things, and its a lot of work, with not always great results. I am sure that many of you know this. I try to put up a good front, so friends and even family sometimes don't know that often that trip to the grocery store, or going to the Post Office, or other simple activities are a challenge. I never tell them that when I am at someones home, and I go to use the restroom, it may be to lay on the floor for a few minutes and breath. It ***** sometimes. I skipped the formal dinner last weekend. I was truly exhausted from just getting back from flying to Boise to visit a good friend with 3 small children. That in itself was a challenge, and although it wasn't perfect, we still had a great time. My husband attended the party and reported back that even if i was feeling good, it would have been difficult. The house was too warm (ugh) , and the dinner was too long. I am so relieved to have had a really good reason to not attend. Today, I went to the birthday party, and I did really well. Not only did I survive, I had a good time being with family and friends. Heat intolerance was not an issue, and my symptoms eased off for today. ( I think that I am in some sort of waning phase) I needed this success to keep going and not giving up on being somewhat social. I am still figuring out this POTs thing, and I am thankful for this forum, to check how others deal with symptoms and adjustments. Thank You
  2. Hello, This POTS thing can be so exhausting and annoying. I continue to try to be social, but it isn't easy. I have terrible heat intolerance, norephinephrine surges and low aldosterone at times. I take fludro which helps with the hydration at least. After experiencing being overheated and sweaty, tiredness, tachycardia and not being able to eat much of the food a host may serve, I am becoming quite anxious at the thought of having to attend sit down, more formal dinners. I have 2 dinners coming up, one I cannot get out of. The first is with my husbands colleagues ( which I bet many people dread in general ) The host is from India, and is excited to be serving us all Indian cuisine. I live in Silicon Valley, and I do like some Indian foods but some of it is very spicy. I have no idea how this will affect my heat intolerance, But just the thought of sitting at a table, joining in the discussion with people I have not met is already making me anxious. I used to enjoy this sort of thing, but I never know what my body may throw at me to deal with these days, whether its being flushed and sweaty, super tachycardia which then leads quickly to exhaustion, or will it be fuzzy brain? Maybe I will glide right thru it all, with just a touch of easily adjustable symptoms. I have a prescription for Propanalol, The heat has really been a factor for me. For instance, I seem to need air circulating even in slightly warm conditions, as I found myself in while visiting a friend who had a newborn. The room was slightly on the warm side, but the air was very still which caused overheating and sweating. This is uncomfortable and makes it hard to focus outwardly at whom I am visiting. I recognize that I must try to forget about focusing on me, but its so hard. The formal dinner party I must go to is that of future in laws. I adore them. However, they are from Rome, and host 5 course meals that are ridiculously filling, and long in duration. One course is always a bowl of pasta, and that's a meal unto its self. Any suggestions on how to get over my anxiety and survive these things? It is sad that often I feel like i am surviving an activity, which could be making it thru the grocery store, party, airplane trip, etc. I have made a lot of progress in managing my symptoms, and I continue to push myself towards being able to do more and more when I can. But after several uncomfortable episodes at parties, including my own, I am just dreading them.
  3. Hello, I have had a long history of UTIs. So much so,that I developed allergies to almost all antibiotics except the penicillins. I had been on Cipro,sulfa drugs and macrodantin. I had to do something because I know that someday I will need antibiotics,and there are few left.( also allergic to erythromycins). I cannot afford to risk more allergies,as I may need antibiotics for pneumonia or some other scary infection. I heard about mannose from a friend, who stopped having recurrent UTI with it. I reviewed Pub Med literature on mannose and discovered that it is used prophetically in paraplegics who have frequent UTIs from cathertization,and that it was successful in treating them. I have taken UTI Vibrance, sold at the Vitamin Store and Whole Foods for about 10 years with amazing success. ( I use the powder) Once I switched to this product,I stopped requiring antibiotics. Only once in that time have I needed antibiotics. Before,I was on antibiotics several times a year. Knowing the risk of kidney infections, I monitor my ph and do chem strips of my urine,and I do go get checked if I think I need to. But the urinalysis comes back negative if I have been taking the mannose for a few days, and start it at the first sign of possible infection. Even last month I feared that I needed antibiotics for a UTI. My urine was more alkaline (meaning that it was more favorable to bacteria), and my chem strip had trace proteins. I had a urinalysis which did show trace amounts of ketones. The doc wanted o start me on antibiotics, even though I was borderline. I kept up with the UTI Vibrance, and it worked. I was able to stay off antibiotics. For me , it really does work. The mannose coats the bladder and sheds the bacteria. But I am also very aggressive in monitoring my urine, and starting it as soon as those symptoms hit. It works for me, Im not sure if it works for everyone. Plus,no doctor would ever recommend it over antibiotics. do your research,but this stuff has saved me from antibiotics.
  4. Hi Circuscat. I just saw Dr Friday at Stanford. She was great and spent about 90 minutes with me I officially have Pots, as my body passed ( or flunked depending on how you see it) the poor mans tilt. Real tilt test in a week. She was very knowledgable and gave great guidance. It took 3 months to get an appointment with her. I sent you a message, not sure if you got it. Let me know when your down here please!
  5. Thank you all for your insights and articles! This does help me to understand that meditation can at the very least, help me to relax, maybe accept my situation better and possibly improve, especially when stressed. Thats what I am hoping for, protecting me from myself in times of stress. Thank you Sunshinegirl for your thought provoking post. I think that Western "modern" medicine is beginning to accept and add "Eastern Philosophy as treatments. Our insurance pays for acupuncture. But your right, in that most docs don't view the entire connection to mind and body, not even counting doctors like the first one I saw who told me this was all in my head even though my aldosterone was low and I was admitted for 3 days in the hospital. Katybug, thanks for sharing that article and your experience. It really is helpful to know how others practice meditation, and even if the meditation isn't the cross legged, humming "Ommmm", it sounds like it really helps. I have tried meditation but I think it needs to become a habit. Kkb1216, I will download the music too. This is all so helpful. I start my 2 week commitment tomorrow, as I just returned late last night from visiting my daughter on the east coast.Talk about stress. A cross country flight will do it. I did do the "tapping" several times on my journey, and I found that it was a simple "brainless" activity that really does work, if only briefly. Meditation takes effort, but with practice I hope to ratchet down my anxiety and help to manage my stress so I stop further damage. Sunshinegirl, I am still in the process of diagnosis, so I don't know what I really have, except isolated low aldosterone, and all of the symptoms of Pots excluding the stomach issues. My endocrinologist referred me to neuro and my tilt exam is in 2 weeks. My endo doc really thinks Pots is the defining diagnosis for me. My pulse will soar and I feel lightheaded after anywhere from 5 min to 40 min standing. I know that I have about 40 minutes (at most) before I have to sit. I do grocery shopping in 20 minute these days, when I can.
  6. I had this recently, after bending down. Also, when I quickly moved my eyes, the dizziness came back. Scared, I called my doctor and they had me drink a liter of gatorade. I had not realized that I was dehydrated (again!) An hour later, I felt much better and the dizziness went away. Then I happened to mention this to my brother, an Ex-Marine. He said that when the marines train in hot climates, they do a "tilt test" throughout the day. They bend over, on one foot or something like that, and if they are wobbly, they immediately run over to the medics for a bag of IV fluids. But since our bodies are not normal, the dizziness may also be the autonomic nervous system lagging? Just today, I became dizzy taking a fast elevator down 40 flights quickly. I was assuming I need more fluids, but maybe I need to accept this as the new me. ugh
  7. Thank you all! I think that I will make an effort to try meditation for 2 weeks, and see what happens. Perhaps it could be useful during certain periods when I know that I will be experiencing more stress, like holidays when my house has always been Holiday Central for our family, ( maybe not next year) It's interesting that @helenhz, meditation actually increased her heart rate, while @sunshinegirl, it did seem to calm her. From what I understand (and I am a newbie) , when our blood volume begins to decrease, tachycardia starts, because epinephrine is released, the flight or flight response to raise blood pressure. Is it even a good idea to attempt to meditate then? I sure feel like I need to try to calm down. We need that kick of epinephrine and unfortunately, anxiety comes along with it. But mediating while feeling okay I would think would be helpful in combating stress, and I think help the body heal. But its interesting helenhz, that as you deep breath, your heart rate increases. I took a meditation class years ago, and someone was taking it to lower her BP. If a person with Pots lowers their BP, that could cause tachycardia. As with everything else about this strange syndrome, everyone is unique. Thank you Sunshinegirl for the specific advice on the deep breathing. I am pretty good at imagining a wave rolling in and out, but I was holding my breath for a few seconds after inhaling. I will try not to, and see if that helps. I can see meditation helping with the overall anxiety. Making meditation a daily practice will take effort, and I have not been great about that. I do know that my anxiety is much, much lower when I have a more normal homeostasis. I will try it for 2 weeks, but it doesn't sound like itcould reverse Pots and make it go away, thats the naive thought I had. My therapist suggested that I try the "tapping solution" technique, and I have to say that it really helps, if only briefly. I used this on my recent flight, and it did calm my nerves when I really needed it. Its super easy to do, but its a quick fix, not like meditation which I think the more you do, the better benefit you get.
  8. Hello, Is this a dumb question? We don't exactly know what caused my symptoms, but I think pushing myself beyond what I knew was healthy probably contributed. So I am wondering if I make an effort to meditate every day as a treatment for stress, will it help? I have been in a symptomatic period for several months, and wishing it would get better. Thanks, Mare
  9. Thank you Circuscat. That is a very smart idea about having hypnosis to help you make changes. I never thought about hypnosis in that way. I am trying not to be obsessive about my illness, but its pretty difficult not to obsess when it is so unpredictable and requires adjustments all the time. Listen to your body, as my doctors say, but don't obsess about it! I live in the south bay, just a few miles from Stanford. I think that I will be seeing Dr Miglis. Good to know what you think of him. I am also seeing Dr. Friday in cardiology. She is an expert in Pots as well. My endo doc originally sent me to her, but it was taking too long to get an appointment so I am being seen by neurology after my test. That is interesting about your tilt test being borderline. I am worried mine won't show much. My symptoms wax and wane, and being on the fludro will affect it, even if I skip a dose. Part of me wants the test to show nothing, the thought being that I don't have an autonomic problem, or they will tell me that. I have terrible heat intolerance, flushing, fatigue, all the dehydration issues, brain fog, low B12, and much more. Thankfully I do not have the abdominal issues as they sound just awful. I have suffered from insomnia as well, and think it is a contributing factor. My brother was worked up for Marfans, but although he has some features of marfans, he has tachycardia caused by an extra sinus node. Is the Marfans clinic at Stanford? Good luck to you! I hope they offer new insight and treatments at the clinic
  10. Hi Circuscat, I too am new to Pots, although I have had symptoms most of my life. I am also being worked up at Stanford and have a tilt table test in a few weeks, and I am turning 60 this year. I am new to this site as well, and find it to be a wonderful, supportive group with lots of knowledge and advice. It has been a depressing year for me. I was hospitalized for dehydration with cardiac changes a year ago. I have no cardiac disease, and was discharged without a diagnosis. After repeated trips to the ER for IV fluids, a Stanford doc discovered I have low aldosterone. Now they believe the underlying illness is Pots. I have had symptoms for years, but now I seem worse but after a year of suffering, I am frustrated that I seem to be only partially diagnosed. I do not have the abdominal problems that you suffer from, which sounds just awful. I seem to not be able to hold onto salt, and am constantly using the bathroom to urinate volumes of water and salt. I hope that you can get better treatment so that you can resume a more normal life. I started to see a therapist who works with people with chronic illness, as I have been grieving the loss of my once active life before my hospitalization, and onset of symptoms I could no longer ignore. This has helped me cope, and now I wait for the tilt table and neuro workup. Good luck to you, and lets hope you feel better in the future!
  11. Thank you katybug and Momtogiuliana for your thoughts. It never occurred to me that I could have low potassium, but it seems that everything gets out of sorts with flying. I will never go thru Denver again, as I am sure that the altitude is just one more insult I can do without. I now have compression stockings, so that will help. I have yet to ask for a wheelchair, as this is all new to me, but I know that I will. It is what it is, (my life) and anything to make the trip better is worth it!
  12. Hello, I was restarted on Fludro this week, and probably should never have gone off of it, and I am already feeling more in control of my hydration. Yeah! ( .05mg/day) But, I am flying from San Francisco to Penn in a few weeks to visit my daughter. I have done this trip twice since having this illness, once on Fludro, and once off of it. I have not read in the forum about what happened to me, so I am hoping for some suggestions and insights. At the time I did not wear compression stockings, because my docs had not realized that I had Pots, only isolated low aldosterone. I am sure the compression stockings would help. Flying is so scary for me, and I have gone to the airport, and cancelled my flights, once on the jet bridge when I realized that I was to dry for the 5 hour flight. But I have flown, and I survived. My first weird and scary problem happened on the flight from Dulles to Denver, and then on to San Francisco. (I was taking .1mg of fludro) I felt really good in Dulles, and walked, stopping to rest, through that ridiculous airport. I felt fine on the flight to Denver, and I was drinking fluids and had salty snacks. Landing in Denver, I layed down on the floor to rest. I then got an awful, awful headache. And I became super thirsty. I felt like I needed water, not gatorade. I felt awful. I ended up drinking a liter of water. I still had a bad headache when I boarded the next flight, however, I think that I used to get headaches ( much more mildly) when I flew through Denver in the past, so I felt that I was better to get the heck out of there. On the plane I continued to drink more fluids, like I couldn't get enough. Nobody drinks this much on a flight! The headache eased some, coming and going in intensity, but never went away until we landed, at which point, it was gone. I must have drank about 2 liters of water. So somehow I must have had too much salt, right? On the way to Penn, I changed in Chicago. I had no problem on the flights, and I felt like I needed extra salt in Chicago, and the McDonalds fries with a bit of extra salt revived me. I know that you loose about a cup of water an hour with flying, and that you naturally loose sodium, to keep the electrolytes balanced. If Fludro keeps you from loosing sodium, then what happened to me makes sense? I have not read about anyone else experiencing this. On the Chicago route, I had only had half a pill (.05mg) , and took the other half later that day. On the Denver flight, I had taken .1mg in the morning. The next time I flew, I was not on Fludro, and obviously, in a better place, but still needing extra salt. I had no problems on the trip out, changing in Dallas, as I am too scared to do a 5 hour flight. On the return, I experienced an intense thirst on the second flight. It didn't last long. I drank gatorade and water, and I had no headache. This is causing me anxiety. I won't go through Denver again. The headache and severe thirst started there, after I was fine on the 3 hour flight getting there. Any insights, suggestions would be greatly appreciated! Thank you all! Mare
  13. Hi, I am new to this too. I am being seen at Stanford. A cardiologist, Dr Friday ( long long wait list) seems to have extensive knowledge in Pots. The neurology clinic also has an dysautonomia clinic which I hope to be able to get into. Good luck, Mare
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