stellaluna

If you don't mind explaining...why did gastrent. say avoid bananas? I also see a gastro. for a non-POTS related issue.

aPPendix 12. SELECTED FOOD SOURCES RANKED BY AMOUNTS OF POTASSIUM AND CALORIES PER STANDARD FOOD PORTION food standard portion size calories in standard portiona Potassium in standard portion (mg)a Potato, baked, esh and skin 1 small potato 128 738 Prune juice, canned 1 cup 182 707 Carrot juice, canned 1 cup 94 689 Tomato paste 1⁄4 cup 54 664 Beet greens, cooked 1⁄2 cup 19 654 White beans, canned 1⁄2 cup 149 595 Tomato juice, canned 1 cup 41 556 Plain yogurt, nonfat or lowfat 8 ounces 127–143 531–579 Tomato puree 1⁄2 cup 48 549 Sweet potato, baked in skin 1 medium 103 542 Clams, canned 3 ounces 126 534 Orange juice, fresh 1 cup 112 496 Halibut, cooked 3 ounces 119 490 Soybeans, green, cooked 1⁄2 cup 127 485 Tuna, yellow n, cooked 3 ounces 118 484 Lima beans, cooked 1⁄2 cup 108 478 Soybeans, mature, cooked 1⁄2 cup 149 443 Rock sh, Paci c, cooked 3 ounces 103 442 Cod, Paci c, cooked 3 ounces 89 439 Evaporated milk, nonfat 1⁄2 cup 100 425 Low-fat (1%) or reduced fat (2%) chocolate milk 1 cup 158–190 422–425 Bananas 1 medium 105 422 Spinach, cooked 1⁄2 cup 21–25 370–419 Tomato sauce 1⁄2 cup 29 405 Peaches, dried, uncooked 1⁄4 cup 96 398 Prunes, stewed 1⁄2 cup 133 398 Skim milk (nonfat) 1 cup 83 382 Rainbow trout, cooked 3 ounces 128 381 Apricots, dried, uncooked 1⁄4 cup 78 378 Pinto beans, cooked 1⁄2 cup 122 373 Pork loin, center rib, lean, roasted 3 ounces 190 371 Low-fat milk or buttermilk (1%) 1 cup 98–102 366–370 Lentils, cooked 1⁄2 cup 115 365 Plantains, cooked 1⁄2 cup 89 358 Kidney beans, cooked 1⁄2 cup 112 358 a. Source: U.S. Department of Agriculture, Agricultural Research Service, Nutrient Data Laboratory. 2009. USDA National Nutrient Database for Standard Reference, Release 22. Available at: http://www.ars.usda.gov/ba/bhnrc/ndl. sorry I know this is huge but useful chart from US dept of Ag. I tend to stick to bananas often because convenient to grab in AM (portable breakfast/snack) and pick other foods here and there. I also like whole foods vs. supplements as others have said. I agree with others who have said be careful of too much of a good thing--potassium overload can affect heart. When my Potassium was low in ER, they suggested banana as an easy quick fix though gave me a pill because I was in ER.

Goodr, Hope this is the one that will bring you some relief. So much trial and error with this thing. Well Wishes, Stellaluna

Walking: a good thing! I don't share often my diagnosis but met with a previous coworker the other day. I tried to briefly explain and what it meant for me at work, personally. At one point I mentioned how I CAN walk. I saw the look on her face.. It is so hard to share, explain the feelings and symptoms that are possible under the umbrella of dysautonomia in the challenge of walking some days; vertigo, nausea, fear of passing out, tachycardia, feet of cement blocks, ... I could go on though I did not with her. I tried to assure her I am okay. Something I was always watchful of is "rebound headaches". I suppose more so before I was on Topamax but even now if I use my rescues too often I think about that. After teens and young twenties drinking lots of diet pop/cola and coffee, the only caffeine I consume is exactly two cups of coffee each day. That has seemed to help also. I didn't realize Paxil had effect of lowering BP--good to know. Makes sense not to attempt something new when you are in flux at same time hard to function in that state I know. I hope you find some relief. Thank you for your well wishes-the same to you, Stellaluna

Kaitlyn, When I first started Topamax (after trying MANY other rescue migraine drugs and a few daily migraine drugs...), I did think I was at 50 mg ( 25 mg in am and 25 mg in pm) though you have to build up to that (per my dr.). We did a few days with 25mg only and worked up to the 50. Soon, I was at the 100mg I am at now and have been for 8-9 years and have doing well. I take 50mg in AM and 50mg at night (though again we worked up to that over the course of a week or so when switching from the 50-100). I had a huge decrease in my number and severity of headaches when getting on Topamax. Likely at some point I will need to get off of it and see how I do, if my body has changed at all... not looking forward to that. Yes, I would look at the research and data about Paxil, Zoloft, Prozac and others (hard to find specific data/info concerning POTS/dysautonomia info. I came across one the other day (don't have it right now) but was saying Prozac most effective and least risky (for teens/young adults) vs. others (not specific to POTS) Yes, I look at half-lives too... It takes time and commitment but marking down a headache/symptom log might help you see what drugs/treatments are affecting/or not. Sometimes I think there are too many factors to write down. I believe my "migraine brain" (that I have been dealing with since childhood) as my neurologist calls it and as he can see on my brain MRI is connected to my dysutonomia though no doctor has ever expressed that. all the best, Stellaluna

Kaitlyn, I think I know how you feel--I would love to find that thing that helps but so scared to deal with even more symptoms. Just from word of mouth from a few friends, (non POTS) brain zaps can be something fairly common with this class of drugs (or maybe time to try another) I suppose when a drug causes so much unpleasantness the balance scale is certainly tipped and that particular drug is not worth it, right? (unless of course if life-saving) I wish you the best with your plan and decisions with your treatment. Such a puzzle and trial and error this dysautonomia... On trying a new med. I have tried drugs and quickly know and quickly get off when I know it is not going to work in my body though some drugs need that adjustment period. Check with doctors of course, but I believe many SSRI antidepressants would need 2 weeks for efficacy. But would that be for POTS patients too and what if the side effects were so unpleasant before those 2 weeks were up? Not sure. Question for medial professional I guess. I mentioned the other day about Topamax that I have been on for MANY years (afraid one day they will say time to get off? is 8 yrs too long? 9?) and many people say it takes 6 weeks to get past some side effects (tingling in extremities, odd taste sensations with carbonated beverages). My topamax side effects were VERY mild but if I hadn't waited the weeks to get past them, I wouldn't have gotten to this quality of life concerning headaches and past debilitating migraines that I lived with for crazily nearly 20 years. I occasionally have what I call "word retrieval" issues where I say "whats that word...?" but I function in a professional job, do genealogy research for fun, and so it is not that bad. I suppose my "brain fog' could be POTS related, age (I am young 40s), or something else but I like to just blame in on the Topamax and take a min to figure out the vocab word or let someone help me.

I would love to see the study/research if anyone gets ahold of it or link. I posted about a frustrating experience at my cardio EP (who I was referring to as my POTS dr... closest thing I have to one I guess). Previously, we had talked about trying an serotonin antidepressant to see if that would help. At this appt, he said Zoloft would be the one. I again said I wasn't sure yet ( I am medically sensitive, had trouble with a few different meds in past, not looking forward to this esp. if I don't have a positive outcome but anyway and if I have issues it may take days/weeks to get out of my system, etc. BUT I am trying to keep an open mind and am considering this as a option to help my symptoms...). I mentioned I wasn't sure about Zoloft because an immediate family member could not tolerate it and switched to Prozac and what about another drug in same family or for same serotonin purpose (we had had this exact conversation months before-he had agreed). This day he said no, the Zoloft is the only one that "works" for POTS. Yikes...

I feel for you trying to figure this out for your daughter as well as going through the emotions of seeing your daughter struggling. You (and your dr.) may want to look into depo's long list of possible side effects. I never tried it because of it sound like.. too much for me though I know it works and seems a perfect fit for many. Regarding migraines (and perhaps I am an outlier), I did NOT get relief when on the pill and tried a few different ones over the years. I struggled with migraines from age 10ish (as I can remember) until finally diagnosed in my 20s and finally started trying medications around age 27 (I am in my early 40s now). My neuro is highly respected in his area and was one that believes (of course drs. all have their theories/perspectives within accepted facts) hormones have little affect on "migraine brains". I never noticed a change in my migraine patterns whether I was on different birth control pills, pregnant, or nothing at all. I tried several rescue drugs and preventatives under the direction of the neurologist and finally relented (didn't think I needed this "anti-seizure drug") to try Topamax and have found it to be life-changing headache wise for me. I'm surprised to hear about lethargy. I didn't realize that could be a possibility however I know I am often medically sensitive and of course others here can be affected too. I also tried elavil(Amitriptyline) but found no relief and it made me too sleepy.

Goodr189, I can understand the question that is this worth it? A grab bag of symptoms added in to in place of supposedly helping one huge symptom. That sounds pretty awful. I don't know if I would have lasted 3 days but some people say you have to get past that adjustment period... For me, I usually know pretty quick if a med is going to work for me. ( or not, though of course I follow doctor's directions too...) I am on one drug as a migraine preventative that I take daily and it is typical for many to take 6 weeks to get past some side effects. Most people experience them (mild, tingling in extremities, intolerance to taste of coke/pop) however if I had not decided to wait out those 6 weeks, I would not have been able to enjoy a quality of life that this medication for migraines has allowed me for 8 plus years now. I wish I would have tried this drug so many years sooner when doctors first suggested. That said, these side effects were VERY mild. A while ago, a neurologist talked me into trying something ( I agreed to give it a try against my better judgement). I did not tolerate well and I felt like I was jumping out of my skin. I think I lasted about 2 days but I felt it took longer than that to get it out of my system. I was on propranolol many years ago (before diagnosis of dysautonomia but perhaps some same symptoms; related to Mitral Valve Prolapse MVP). I was on it for two stretches of a year or more each. I eventually got off only due to pregnancies. I found it helpful for heart rate and BP. Of course every "body" is different but the only side effect I remember (and I tend to be medically sensitive...) is it made me quite tired but I functioned well > I was either working many hours with many young children or mother of at least small child at home if that puts things into perspective. It was not that incapacitating for me. ( again before major onset of POTS/Dys. symptoms and diagnosis). For the BB propranolol, the benefits outweighed the slight negative side effects for me. I don't remember the dosage I was on--it was time release. I think I took brand name Inderal LA at the time. Obviously consult your doctor but I wouldn't give up right? Keep trying. There might be a BB that would work for you or at lease give you some relief or at least something else to help... Wishing you the best, Stellaluna

Sarah, Thank you for taking the time & care to respond. Yes, I guess I knew what my possible syncope plan should be. Silly of me not to plan on going to hospital if I pass out. In my heart, I feel it will just be a simple blood pressure/heart rate thing but not worth the risk to go unchecked and I WILL go get checked out if and when it happens. Just so tired of medical bills and the SAME tests redone with same results but such is the story for many here. Money should not be a consideration when it comes to medical care...I will do what needs to be done. At the beginning of some of this when I was much more pre-syncopal (if that's a word?!) my potassium was very low. So I've been diligent with bananas and other nutrition supplements; one reason why yesterday's EP's lack of knowledge on that was esp. upsetting/annoying as I've been careful with that. Yes, good reminder Florinef can "mess" with electrolytes and something to watch for. Thank you. I knew the doctor list here on dinet.org wasn't a recommendation or screened list per say but thought at least it was a good sign that this cardiologist (EP) had experience / knowledge treating POTS/Dys. patients. And I have to say, in comparison to many other doctors that I have left in tears or have been hugely or nearly comically misdiagnosed, this doctor was an enormous improvement. He just might not be the best or right one for me. side note: For a totally separate issue-my gastroenterologist (not POTS stuff) that I really like, that I have been "worried" for years would be gone or retire (He just looks very old, not sure how old but very good bedside manner and I trust he knows his stuff); Well, I just got the call that my next appt would have to be adjusted because he is retiring...AARGH! I've long felt I could use a life assistant just to make apts, make calls, maybe interview doctors! Just a dream... I tend to be more than a little cautious when it comes to the internet, social media and sharing personal information. I don't do Facebook and for twitter and others always use fake names, rarely to never share my location. I have shared here that I am a teacher and as of late I am increasingly concerned that my health situation or the perception of my abilities may affect my employment. Working with some school boards is contentious. Some school systems would ask you to go to their doctor to clear you to ensure that you are fit to perform the job. I'm probably being overly cautious. There are many other pieces to this I could go into but this would be much longer--I tend to be wordy! My point is that I'm not sure I'm comfortable sharing my area in order to find a doctor --even though I have not used my real name. I will have to think about this. I have thought about making a trip to a large center/hospital that specializes and many people have good experiences there though this would not be a location I could go to more than twice a year. It also may be complicated with insurance. Again, thank you for your posts and for listening. The process of me typing as well as hearing other thoughts is very helpful in me organizing my thoughts and putting things into perspective.

Thank you both... This is a EP cardiologist found listed on Dinet.org. I initially had such high hopes and again MUCH better than last few (one had misdiagnosed heart failure!! not!) cardiologists AT LEAST he does have experience and some knowledge of POTS/dysautonomia. Yes, I forget doctors can have bad days too. I am a teacher of young children so I feel I have to try so hard to be patient, "on", attentive to 20-some individual-needs, and aware of all things at all times every day when I am working; It's hard for me to be forgiving with a doctor who just needs to focus on just me for a few minutes. I'm sure I don't know all of a doctor's stress and pressures. I have to work on forgiveness and empathy in that regard. ( I guess I'm acting like the kids I teach, a bit ego-centric right now) However, I may start the search again for another doctor.... We'll see. He didn't want to see me back for another 8 months. So unless I have a need/crisis-- I have time to think about it or switch if I can find someone else. I never even got to one of the questions I wanted to ask the dr.--I am often pre syncope though Florinef seems to be helping with that. I have never passed out. I want to have a plan in mind if I ever do faint. Do I need to go to urgent care/ER/dr? If I feel well and my BP and heart rate normalize, would it be important to go anyway since this would be first incident of passing out and also is it important as documentation in case some years in the future I need to apply for disability if my situation changes drastically? (I am still able to work now). Obviously, I am not asking for medical or legal advice from anyone here. I'm asking hypothetically and asking about personal experiences if you are willing to share. My subconscious motto is often "Plan for the worst and hope for the best". I really have become more optimistic as time goes on in life but I do like to have a plan in my head and then I feel like I can handle anything that comes my way if that makes sense. I feel like a dr. would always say--go get checked out--due to liability and worse case scenarios. I'm just wondering what others have done with their first syncope episode or what you think for documentation purposes... Thanks again for listening to my appointment rant yesterday. It feels better just typing it out. It is so comforting to know I have this outlet with listening ears that can understand and empathize.

I went back to the doctor today.... one listed here on and the best I have encountered so far and the least frustrating HOWEVER... Today he seemed to contradict some recommendations for medications/changes and predictions for the future and wide generalizations vs. the last visit 6 months ago. (I won't go into all that...) Despite taking little time with me, he seems to sum up that my triggers for what he called today my neurogenic dysautonomic dysfunction/POTS... not sure exact or even if I have an exact diagnosis yet (only TTTs, EKGs, ECHos and verbal histories) but he thinks my "cause" is-- stress. I quickly tried to reexplain what I have come to understand as my triggers (heat, too many weeks with only a few hours sleep, not keeping up with water/salt) and what I believe what the initial major catalyst was 2 years ago but his body language and lack of eye contact showed me he was done with the conversation. I'm sure I appear to be doing much better today. I woke with energy and able to function well. In the office I was not upset nor visibly "stressed" as last time though I am under extreme stress right now--just lost immediate family member unexpectedly last week, another is terminal and two others very close are in very upsetting and stressful situations, among the other general life challenges I'm sure we all go through--and I am also under duress at work. If stress were the major cause of my POTS/dysauto. triggers., it would seem I should be in crisis /flare at the moment. Though florinef that this dr. prescribed seems to be having a positive effect, I mentioned that the other very hot humid day, my heart rate shot up to 220 just walking slowing down a hall-never had it been this high and I felt VERY sick, while other times it is going very low ( 49/50s resting or sitting) and though I don't quite have a normal, lately one normal is 85-120 sitting walking though that can vary of course. The dr. had nothing to say about this except the heat will be very difficult for me and stay out of the heat and drink gatorade. I have long told him that the nausea prevents me from keeping down many of the electrolyte products including gatorade, powerade & coconut water. I occasionally do a few powders, drink lots of water, doing well with salt, and do what I can otherwise and generally eat healthy. When discussing the need for potassium, the dr. said there is actually not much posstassium in bananas ( I had been eating 1 per day for this purpose) and gatorade is better for that. What? I just looked it up and bananas have 420mg of Potassium while gatorade has 42mg of Potassium so I would need to drink 10 gatorades to get as much Potassium as one banana. Also, I eat other healthy things such as avocados often which have a good amount as well. I know for a fact that doctors get little nutrition training but this day was SOOO frustrating today especially when I think of this 10 minute consultation and med refill as a service that I pay so much for out of pocket as well as someone I look toward for problem-solving. Thank you for listening. I long for a dr. that is willing to take more than 10 minutes with me and look at the whole picture. Or maybe I should just "long" for or wish for resolution and cure...

I am normally on my feet much of the day indoors but sit often for quick breaks. This week I had an unusual day outdoors where I sat seldom and walked many miles in the 6 hours of my day (70-78degrees) It was too much of course and am still paying for it. I noticed pooling which I don't have often or don't notice often and when I do have it---I think it would be considered mild. Two days later I noticed a very large odd bruise on my calf as well as a few smaller ones. Does anyone link bruising with pooling or know of this?

I was also on amitriptyline --that's elavil right?, as a migraine preventative attempt for a stretch of time more than 10 years ago. I can't remember the dosage but I do remember that it made me very tired and it really didn't do a great deal for the headaches. (this was before huge POTS jump in symptoms and well before diagnosis) I have tried many medications for migraines both preventative and rescues over the years ( imitrex made me nauseous worse than the migraines!) Of course every person/body is different, but for me, the most life-changing migraine-wise has been topomax. I have been on it for many years and wish I would have tried it sooner. Though there are some side effects to get through in the first weeks--

I don't have one--but this looks like it is using the idea of acupressure (vs. acupuncture) but I wonder how it would reach specific acupressure points/places. I use hard foam yoga roller tube thing that has raised bumps on it. I lay on it to put pressure on my back and helps sometimes with certain pain. Same idea as mat I think but using stretching too maybe ?

When I wear my wrist/ chest strap heart rate monitor I can often see jumps in HR during the night also. (not related to nightmare, getting up, etc.) Mine will jump from 50s to 100s seemingly from movement/rolling over or other unknown cause. In the past I have also had Holters, Echos, etc with nothing too alarming and have an EKG every time I see my dr (hate the bill....). I do find stress seems to overload my system sometimes. Xanax (alprozolam) will sometimes keep HR more even during night but not consistently lasting entire night. EP dr would like me to try an antidepressant as some POTS patients respond to the seratonin and see relief in symptoms. I am putting off adding another med. I had thought taking my Florinef in pm was making an impact on my HR and sleep quality but my doctor asked me to switch to AM dosing and did not think this was true. I hope your situation changes soon. Rest makes such a difference.

I occasionally use EmergenC packets to mix in water (the regular ones not specifically electrolyte one as some others here do). It sometimes gives me a little burst to get some things done. I'm not sure if it is the electrolytes in it, the vitamins I may be missing (B, C,...), or what... But it helps me. They come in a few flavors and I think rec. to mix in 8oz water.

I have been thinking about this thing...a cane with a small fold-down seat. I am not in need of a cane for walking but having a seat in certain circumstances sounds wonderful (instead of sitting on a curb, the ground, squatting, etc.) Has anyone tried one? Is it light enough to be useful without cumbersome? I have found one for about $40 including shipping online with a foam handle that is aluminum but does not list its weight.

While I know each POTs/ Dys. patient can have diff issues and react differently to medications, etc... this has really got me thinking. The dr. recommending switching to AM dose is an EP found here on Dinet. I trust him more than other doctors thus far for dysautonomia-related knowledge but even he says "this is difficult to treat". A bit depressing. Yes thanks for mentioning concern: I am having less headaches now. I am being monitored for BP in office occasionally and at home (edit::with a home BP monitor and often continuously with an HR wrist/ chest strap) and salt is dr. coordinated. Since the Florinef, my BP is only slightly higher (in normal range and not the "wow you are low" I used to get pre-diagnosis) and my heart rate is lower often (often not the crazy highs) though occasionally still the erratic orthostatic jumps So, concerning the change of timing of Florinef, I looked up the half-life. Even though it does build up in the system, here is the half-life: The approximate plasma half-life of fludrocortisone (fluorohydrocortisone) is 3.5 hours or more and the biological half-life is 18 to 36 hours. I suppose that makes sense why my card. EP is saying I should try AM for awhile. It sounds like perhaps the big effect could be the first chunk of the 24 hours I take it. Still not sure it will "work" for me. I hope I don't need to try 2 doses .. or if I do... hope it is helpful and not more harmful as some people experience. Here's to hope.

I have been going for acupuncture treatments for two years for many different medical issues (long before suspected POTS though some POTS symptoms I suppose). I go every 2-4 weeks. I would love to go weekly but it is expensive. I go to at TCM -tradtional Chinese Medicine Practictioner and receive a massage after the treatment. 15 minutes is included in the price of the acupuncture treatment though I splurge when I can for a 1/2 hour. They use a mix of acupressure, deep tissue, and many other techniques. I find relief for many issues (insomnia, joint pain, fatigue, migraine --though the day of the treatment wipes me out, and sometimes helps countless other things I mention and sometimes have needles inserted for.) Some treatment days I notice more relief than others but I think it is an important part of my treatment plan of a mix of eastern/western medicine. I use the time with the needles in to meditate. It is surprisingly often relaxing. Most needles inserted to are unnoticeable-don't hurt at all. Laying perfectly still and relaxing while the needles are in, you will likely not feel anything. If you try moving around on the table, it will be uncomfortable. Occasionally at a supersensitive spot like inner wrist that they sometimes do on me for I think insomnia or anxiety I think---it is not pleasant going in but only lasts a second or two. My sensitive spots are my elbow but due to my joint pain issues. On the whole, it is painless and an enjoyable experience. I recommend it--worth a try.

Thanks for replies. For me, the Florinef seems to be slightly raising BP and lowering heart rate. (this had seemed to be a good thing for my body and racy heart in helping me calm and sleep). However, I am also earnestly adding salt and keeping up with water so hard to say if it is def. Florinef, a change in my dysautonmia cycle or something else affecting symptoms. Anyway... Unfortunately, now that I have switched my once daily dose from evening to AM, my sleep this week is a wreck again. Daily symptoms are not relieved as much as I would like with AM Florinef. Doctor and I are not wanting to go to two doses ( am and pm) of Florinef.... I will give it a bit longer and see how things go.

After three months on .1 Florinef once per day ... I went back to EP. Some relief possibly though hard to say if it is Florinef or other modifications/ changes. I HAD been taking Florinef in PM and had noticed considerable improvement in my insomnia (ability to stay asleep and fall asleep due to less racing/ tachy). I have been also able to see this data also on a wrist and chest strap HR monitor. EP did not seem to think this could be the Florinef making this change in nighttime HR. He suggested swiching to AM dose of Florinef to help with day symptoms. I am on day one of AM dosing and huge headache. (though I am a migraine person, perhaps just coincidence) I 'm hoping better in a few days. Anyone who is only only 1 daily dose have experience with difference of AM/ PM dosing or notice change?

Unhappy about this. My doctor suggest a 2nd TTT today. My first was quite unpleasant though positive (no pass out). One reason he stated is that he doesn't use nitro or anything for that matter because anyone will react in some way to it. He needs more information for our course of action... Here we go again. Also I had a bad experience with the staff, process and this next TTT will be in a diff. location. I am on Florinef and asked about this. He said stay on it for the test. I wonder how this will affect the results.

So funny. Love it!

I don't know about insurance... The pair I have is non-medical grade. But the reason why I want to mention it is that them is they are toe-less, so much easier to get on than a full pair of socks/stockings. I'm thinking flip-flops might work with them. I've only worn them around the house. They go up to (just below knee). I bought on amazon and were less than $30. Now that I think about it--glad I saw your post...I will include them in my non-refunded medical costs/equipment on my taxes. I have seen a style pair on pinterest that is knee (under not above) to ankle; interesting style.