abnel

oooh, I'm sorry to hear that. It's so frustrating when doctors promise much and deliver so little. I would feel doubtful too of everything he's said about the machine and his experience given his contradictions. You can only do what you can do at the moment, so if it's off the cards, he'll just have to wait for a long time before getting his machine back while you decide if you want to try it.

Hi Caterpilly, I sometimes like to drink packet Miso soup. It is usually very high in sodium (800mg) and you get a huge hit of sodium from just one packet. I don't find it tastes terribly salty compared to other foods. I can buy it from my local supermarket but you can probably also buy it from specialty Asian food stores. How did you go with the light therapy by the way?? (sorry, I've forgotten the name of it).

Sallyblooms, do you know the name of the neurotransmitters test you had done and where the testing took place? Was it a blood draw or urine test or a home test? I am still thinking of taking L-Carnetine but wondered if I should have a neurotransmitters test done first.

It's a bit worrying really. I wonder if the consequences could be different for us compared to the rest of the population. I know we're told to increase our salt intake but my POTS specialist admitted that the long term consequences of a high salt diet in POTS patients is currently unknown. He would prefer it if I could get to the point where I no longer need as much salt as I currently take and in the same breath said the amount I take would do little therapeutically to help me anyway. I currently take 3000mg of sodium chloride tablets and add salt to my food. I am fairly sure that some time ago I read that there is a higher rate of stomach cancer amongst the Chinese in China than in most other countries. I think the authors speculated in that article that it could be related to the fact that some population groups in China eat a lot of fermented food, like fermented soy beans, etc.

PetuniasMom, I had exactly the same problem all last Summer (November/December/January) and it was utter torture. I can really empathise with what your daughter and you are going through. It was an unusually humid and tropical Summer where I live. The air felt so heavy with water vapour I couldn't breathe it in. My lungs felt like they were going to collapse and my breathing was no longer automatic. Breathing was bad even indoors with the air conditioner on. Back then I was working and I really struggled. I felt like I was going to pass out leaving my air conditioned car to walk to my air conditioned office. It was truly the worst summer I've ever had. On a positive note, last Summer I found I coped better and better as Summer went on. It just took me a very long time to acclimatize to the weather. As I was working I had no choice but to force myself to acclimatize to being outdoors. I had to walk to my car, park my car, and walk into the office. I also continued to force myself to go outside and do walks every day (usually when it had cooled down a bit at night and early in the morning). I've recently been through another breathing crisis so not sure if heat/humidity are the sole culprits anymore and whether there are other complicating factors. Sorry, I wish I had some magical solution I could offer you. You are doing the right thing keeping the air conditioner on for your daughter to help keep her as comfortable as possible. She might find a cooling vest helps also. It definitely helped me when I was overheating last summer, and perhaps eased my breathing a little. If heat/warmth are what troubles her breathing, then she will hopefully get better over winter as I have. I've been so much better this Winter with breathing and with POTS symptoms overall, until this latest breathing crisis.

BellaMia, I am truly sorry you are so unwell at the moment. This is a crazy illness and it really tests each one of us in different ways and for reasons we cannot understand. You made me laugh the way you described the hurricane - it certainly sounded like Mothernature at her finest! You have a lot of strength to get through what you do on a daily basis. It's lovely that you have family and beautiful grandchildren that love you. I hope you get better every day and get the medical help you need very soon. xoxox

I just wondered if it could also be an intolerance to "glutamate" as soy sauce is high in this natural amino acid. Other foods like cheese, tomatoes, mushrooms, stock cubes are also high in glutamate.

...and Mack's Mom, it's really good to see you back! Sorry to hear about your ordeal over Summer but glad to hear things are going okay now.

Thanks for your responses. I mentioned Singulair to my pulmonory doctor but he told me it is only available to children in my country (Australia) and because it's not on the PBS scheme it costs $90, so he didn't want to prescribe it. But I've heard good things about it from you and on other forums so it sounds like it is worth a try, even at that cost.

I had a nasty infection that started 6 weeks ago and which lasted for 3 weeks with complications that landed me in hospital several times, triggering my latest breathing "crisis". Out of desperation I have been experimenting with small doses of over the counter Mast Cell meds to see if my breathing issues could somehow be linked to overactive mast cells, not simply "idiopathic" POTS. Previously nothing has worked, (ie, asthma inhalers), and all my pulmonory workups have been normal. I got tired of being sent away by doctors and being told I simply have a sensitive response to the "sensation" of shortness of breath, in other words, we can't find anything wrong with your lungs so it must be in your head. So I bought some over the counter stuff, Claratyne and Zantac. I did my research and I contacted a MCAD specialist who very kindly gave me some tips. I started taking these meds last Monday and I don't know if it's coincidence, but my breathing has definitely improved of late, although it's still not great. My respiratory specialist suprised me the other day by taking what I said about MCAD seriously and prescribing Intal Inhaler (Sodium Cromoglycate) which is a mast cell stabiliser. I took it today and it made my breathing much worse, almost back to square one again. I discovered that the inactive ingredients in this inhaler are providone, macrogol 600, and 1,1,1,2,3,3,3-heptafluoropropane; something that's used to extinguish fires! That kind of freaked me out. I have wondered whether I should perservere with it or whether I had an allergic reaction to it. I still don't understand my "POTS" body that well even after 2 years when symptoms keep changing on me so much. I think I read somewhere about mast cells sometimes being stirred up in the first few weeks of taking new meds, but then settling down after a while. Has this been the case for any of you? Has anyone ever taken Intal/Sodium Cromoglycate and had a bad reaction to it? Would love to hear your stories and/or advice.

((((((RockiesGirl)))))) Big hugs. I am so sorry for what you are going through. I am thinking of you and hoping you find strength and serenity in this difficult time xoxox

For me it is the debilitating shortness of breath. It's been very bad lately.

Thanks ABC. I wondered if there is any type of exercise and heart rate zone you could recommend people start doing before going on the exercise protocol. I'm fairly exercise intolerant at the moment as I'm going through a pretty bad POTS flare, and I could imagine the protocol would be a real shock to the system. Also, does the exercise protocol gradually increase in intensity and duration for the 3 months or does it hit you like a truck from day 1? I realise it might be different for different people but it would be great to get your perspective.

Thanks so much for posting and letting us know how you're going. I'm really glad to hear it's worked so well for you and that you are feeling more functional than in the past. I appreciate your honesty in sharing your view that while it might reduce symptoms dramatically for some, it's not a magic cure. I have a query about the protocol that I hope you can answer. There are times when I exercise where I find after (or sometimes during) that I have pushed myself too hard and I have a flare-up immediately. When this happens, are you meant to continue the programme whenever you are scheduled to do it next, even if you are still in the midst of a flare-up? What does Dr Levine think of this? Does he have a theory about pushing through? Have you ever done this yourself when you've had a flare up and pushed through anyway? Did you feel worse or better? This is probably the one aspect of the programme that I am most concerned. I usually give myself the opportunity to recover from a flare up. I don't mean that I stop exercise altogether, but I modify it and make it easier for the next few days until I feel strong enough to do what caused the flare up in the first place. I hope to hear from you again.

I've just endured 3 weeks of a gastrointestinal bacterial infection and boy can I relate to what you are saying. While I might have had the infection for only 3 weeks, it seems to be taking me an inordinately long time to recover. In fact I am currently in what could only be described as a POTS hole right now and am the most exercise intolerant and housebound I have been since coming down with this condition (although I do have other complications like low potassium presently which in itself is almost as bad as the gastro). The worst part is that it takes such a long time to build back up to where you were before the illness hit. Does anyone else find this?? For example, last year after having the flu for 3 weeks, it then took me a good 6 weeks to get back to where I was prior to having the flu, possibly even longer.

Thanks for the tips re avoiding Yoga with fast positional changes. Having experienced a style of Yoga where we were doing lots of transitions from what felt like a push-up position for much of the class, I'd have to agree with you. I might check out the different poses you guys seem to be able to tolerate and see if they are the sort of thing I might be able to build up to.

This is an interesting topic and thanks for raising it. Unfortunately I am one person who has not responded well to Yoga. In fact Yoga was one of 3 things that triggered my fully blown POTS symptoms in 2009. I am not familiar with styles of Yoga, however the one which set off my symptoms involved considerable bending at the waist with face/chest down towards the floor, lots of floor work but holding quite difficult positions over the floor, etc. Immediately after the class (and at times during the class) I felt very strange, my BP was all over the place, and from that moment on I slipped into a POTS hole. That's why I find it interesting that some of you say that Yoga actually helps stabilise your blood pressure, as the opposite has been true for me. I tried to do a type of Yoga called "Dru Yoga" several months ago, but the room was very hot, no air circulation, incense was burning and I really couldn't breathe and felt light-headed. I then saw a Yoga practitioner for a one-on-one session and she had me practise a pose that me feel worse after and I had another relapse. For those of you who can do Yoga, is there a type of Yoga that helps you/other Potsies? Are there particular styles that those with POTS would be best to stay away from initially?

They really are life savers aren't they? My ice vest was invaluable to me last summmer, and enabled me to be more functional than I would otherwise been been. The only problem is that mine is very obviously an ice vest and I get looks and comments from people when out and about. People say to me "are you hot? It's not THAT hot!". My vest has bead crystals in it that need to be soaked in water then the whole vest needs to be frozen for hours before it is 'charged'. It's the same type that sportspeople and anthletes wear. I like the look of yours because it looks like an ordinary vest. Do you mind giving me details of the supplier, cost, etc?

It's interesting how we're all so different. I can't make rhyme or reason of my exercise abilities. I am usually okay'ish with stairs (at my fittest a few months ago for exercise I would walk up and down my flight of stairs 13-14 times), but I cannot walk up steep hills at the moment. I have great trouble walking for more than 20 minutes, but on a good day I can do my Tai Chi class for 1 hour with all the lactic acid burning in my legs from holding positions/postures, with only two to three breaks. Yet I cannot stand still for more than 5 minutes on a good day. I cannot run at all. I really understand what you mean about being able to do exercise but still feeling like crap. I seemed to have more exercise tolerance last year, but felt worse when I wasn't exercising. This year I feel better when I'm not exercising. It's all very odd.

Hi Katybug, I'm glad you've found out about the potassium issue as hopefully you won't have to go through what I've been through. It really irritates me that some doctors who prescribe Florinef don't even bother to check potassium levels when low/high K levels can be life threatening if left untreated. Every time I ask for my K levels to be checked, my family doctor tells me Florinef increases potassium, before I remind him it's the other way around!! Bren I hope you're feeling better now.

I can totally relate and have the same difficulty swallowing but usually only during flare-ups of my breathing problems. For some reason excessive salivation, difficulty swallowing and breathing problems all go hand in hand for me. I tried explaining this once to my pulmonory specialist who put it down to our ANS not functioning properly as these functions are partly controlled by the ANS. I find that the worse my breathing problem is, the worse the swallowing problem. It can take me 10 times longer than everyone else to eat my meals, swallow tablets and drink - I have to really focus on my breathing, then swallowing, not choking and not disgracing myself by drooling!

Hi Bren, I also had to go to the ER twice this past week for severe shortness of breath and a very slow heart rate (in the 60's which is unheard of for me). I felt extremely weak. My blood pressure was also fluctuating. I am also taking Florinef 0.1mg daily but the complication for me is I have had a bacterial gastrointestinal infection for the past 3 weeks causing electrolyte loss. Did they check your potassium levels at the ER? Have you got your bloodwork? If so, check to see what your K and magnesium was. My potassium was 3.1 which is WAY too low for me. My ECG was not normal which they attribute to electrolyte problems. Normal K levels for me are 4.1. Hypokalemia (low potassium) can cause brachycardia or tachycardia, breathing issues, heart rhythm problems, etc. I am now taking huge hits of potassium each day to build up my intra-cellular level of potassium. I am starting to feel better although am still very weak and decoditioned from the 3 week bout of gastro. I know you haven't had gastro, but potassium levels can get very low just by being on Florinef. I always have to supplement anyway. Just because you have a normal ECG with low potassium, doesn't mean potassium isn't the culprit causing the problems. I also had to go to ER earlier in the year because potassium was too low due to the Florinef but had a normal ECG. As soon as I started the potassium within a week my breathing started to get better. If ER didn't test your K levels I would definitely get your family doctor to do it asap to check what's going on with your potassium.

Shortness of breath is my worst symptom. There are 4 things that help me: 1. fanning air on my face with an electric fan; 2. staying cool - wearing my ice vest if necessary; 3. wearing compression hosiery. 4. time and staying calm; ie trying not to panic. Compression hosiery works for me because I think my SOB sometimes relates to low blood pressure. So if you have a tedency to be hypotensive (especially after exercise, food consumption, hot weather, etc) compression hosiery might help. Unfortunately ventolin and asthma medications have only given me very short term relief (we're talking say 20 minutes relief at the most), but they may work for you. I really cannot recommend holding your breath. This will undoubtedly play around with your blood pressure too much and may not be good when you are in a breathing crisis. If blood pressure has anything to do with breathing issues (which it may do for some of us), I don't think holding one's breath would help. Best of luck - I really hope it eases up for you soon.

I love the HR monitor watch and the bracelet. Would you mind explaining to me what the physician alert ID bracelet is and how it works? I tried finding information about it on the website but couldn't seem to find anything.

Hi, I just wanted to share my experience with TTT and poor man's tilt tests. My TTT in 2010 showed a sustained 24 BPM increase in HR over 10 minutes with HR only doing around 100 and no major increase or decrease in blood pressure. Even though 100 isn't a high number I was very symptomatic, felt very tachy and felt every heart beat. I had facial flushing and nausea. Even though I didn't quite fit the criteria for POTS they still diagnosed me with it based upon my symptoms and history. During the poor man's tilt test this year my HR increased more than the 30 BPM and my blood pressure kept climbing. But I felt better than during the TTT, although I did become short of breath as the test went on. Although clinically you have to have an increase in pulse of over 30 BPM within 10 minutes of standing from the supine position or a HR of over 120 within 10 minutes, I think an experienced doctor should recognise that a patient's history could lead to a POTS diagnosis, because some POTsies can pass a tilt test or poor man's tilt on a good day, or even on a not so good day (as happened in my case). Similarly, if someone is failing a TTT but has no symptoms, the patient's history has to be critical in diagnosing POTS.