abnel

I am going to suggest something that you don't have to ingest and it's one of the few non-medications that help when I feel quite nauseated. I rub a few drops of pure ginger essential oil over my stomach in a clockwise direction in a circular motion several times and it honestly gives me so much relief. The other thing that really helps me is to get my husband to give me a foot massage and to press in the arch of my foot where the pressure points for digestion and stomach are located. The points where it hurts the most are usually the right target and sometimes I feel an instant sense of relief. There are also several pressure points that help if you massage them. There is one located on either side of the leg below the knee on the lateral side of the body. There is another located in between the thumb and index finger in the fleshy webbed part of the hand. It's probably best if you can look this up on the internet for Chinese accupressure points for the stomach and for relieving nausea. Incidentally this particular pressure point also helps with dizziness and really takes the edge off for me when I am both dizzy and nauseous. I realise that none of this may be strong enough, but hopefully in combination with the right meds it will help.

Hi Naomi, I also take pure Sodium Chloride 600mg at least 5 times a day. I was told by my doctor not to try any of the other types of salt formulas as they can cause even more gastric upset than the plain sodium chloride tablets.

I have hypotension and I am always running hot (as in I always feel hotter than everyone else). I think my body temperature is also warmer than most, even though I don't have a fever.

I only salt load in the morning and have never tried to do so in the late aftgernoon or at night. At the time I started this regimen I was okay upon waking but from 10am onwards I'd slowly deteriorate to the point where by 1pm I was very tachy. My doctor told me something about needing extra salt in the AM due to the production of hormones for the day waning by around noon, which is when the extra salt can really help. Sorry this is so vague, I wish I could remember exactly what hormones he was talking about! I find that if I salt load in the morning, I don't need to take much more in the afternoon, although I will still eat some salty food for lunch and dinner. Maybe try to salt load in the morning and see if this helps? It can take your stomach a while to get used to the increased concentration of salt, especially in the AM(in my case about 3-4 weeks) but once I was used to it I didn't have tummy problems since.

I used to have the night sweats every night which woke me at 1, 2 or 3 am every morning, then I couldn't get back to sleep for hours. Ever since I have been taking my salt tablets (5 a day) plus increased salty food and water I have not had this problem, although I still overheat sometimes, but not as badly as pre-salt tablets. In fact the salt tablets have impeded my ability to sweat, which is not always a good thing in summer when your body needs to cool down. with regard to the difficulty breathing, I can really relate, except that my breathing problems are often more problematic during the day. I find that my breathing might not be too bad at first, but as soon as the anxiety kicks in it is much worse. So while the physical problem precedes the emotional one, the emotional one amplifies and makes the physical so much worse, to the point of panic sometimes. The one thing I have found that relaxes me before sleep, and helps me sleep better, is a herbal tea called "RElaxing Tea" by Red Seal. It contains Chamomile, Passion Flower, Valerian, Catnip, Scullcap, Strawberry leaves and peppermint, some of these ingredients being well known by herbalists as 'nervines'. It just seems to take the edge off the sleeping problems for me and I take it when I know I'm going to have a bad night. The nervines are meant to calm the nervous system. A family member who is a naturopath gave me a potent herbal formula of the nervines - passionflower, melissa, scullcap, and valerian - which I took during the day. It made a big difference for the first week, but after the first week it started doing the opposite. I've read that valerian can have the exact opposite of the intended effect if taken for too long or at too high a does. I can also relate to the increased heart rate upon waking. Sometimes just before waking I can sense my heart is finally 'settled', but the moment I open my eyes and become fully away, it takes off. I am sorry to hear you are having a hard time and I can also relate to the fear of going to bed. I used to fear it too because when I first got sick my heart would start to gallop the moment my head hit the pillow. Very strange in a condition where being supine is meant to be better for us!

Thanks everyone for your advice. Very interesting regarding the gluten/grains as I have come up negative to these in food intolerance tests. Ashleton80, I do short walks outdoors for exercise although in extremes of heat or humidity I use a treadmill. I have been following what people have been saying about recumbent exercise and am thinking of buying a recumbent bike or rower machine. When I've used a rower at the gym, I've always noticed my heart rate has been lower than when I walk. Good of you for being able to exercise at the 160 zone! I struggle when my heart rate gets over 120 these days. I get really out of breath. People tell me it's my fitness but I just can't seem to push through that range without feeling like my heart is going to pop out of my chest and I am going to strangle for lack of air. The highest exercise HR I've been able to tolerate since having POTS is in the 140 zone in a temperate rainforest where I felt fantastic because there was so much oxygen. I often think if I could live in a rainforest I would be much better off.

For those of you who can tolerate some exercise, have you had any success increasing your level of exercise (in duration/intensity) in spite of breathing problems? Breathing has become one of my biggest problems, particularly during exercise. Usually this happen while my HR is within acceptable limits set by my exercise physiologist. I am so frustrated as I want to be able to increase my exercise but I can't do it while I find myself gasping for air. I feel like I have been stuck doing the same exercises for the past 12 months without much improvement. Has anyone had a similar experience and been able to push through? Has pushing through made you feel better or worse in the long term? I would love to know whether those who have had some success with Dr Levine's exercise protocol have had breathing issues.

I got sick with POTS in the second half of 2009 although I didn't know it at the time. It started off very gradually with heart palpitations that would wake me from a deep sleep and a feeling that the floor was giving way under my feet. Over the months it became much worse with palpiations during the middle of the day, chest compression, giddiness (blood presure all over the place), difficulty breathing, etc, etc. My GP thought it was post viral fatigue syndrome but I new it was more serious. My POTS was the worst in November/December 2009. Then in January/February in the hottest months, once I started walking, I started feeling much better even though I still wasn't tolerating the heat that well. Looking back, I was able to stand on a beach at my sister's wedding in 34 degree heat (celsius) [that's around 93 degrees farenheit] It was 34 in the shade but 44 degrees in the sun where we were standing! It was awful, but I somehow managed. I was also able to walk to meet friends for lunch in the city in 36/37 degree heat(celsius), something I would not dream of doing now. I can now barely tolerate a 27 degree day! What I can't understand is that all my other POTS symptoms feel better now than they were back then, except for this heat sensitivity and breathing problems. Anyone else had this experience? Has anyone been able to acclimatize themselves to heat by gradually exposing themselves to the elements, or is heat avoidance the only way to get by? I am just wondering whether the fact I had to expose myself to heat (ie had no choice in going to my sister's wedding on the beach) someone forced me to acclimatize even though it was an extremely uncomfortable (almost dangerous) experience.

My current treating doctors are all very well intentioned and kind people but have very little experience with POTS. I can't see Dr O'Callaghan at Austin for several months as he is completely booked out and Dr Esler is no longer taking new patients. To tide me over, I was hoping to find a GP who has some experience with POTS. Can anyone who lives in Melbourne or surrounds recommend a GP who has experience with this illness? I am struggling to work, breathing and summer heat is a real issue, and I am hoping a doctor more experienced will not look at my constellation of symptoms as being unrelated and irrelevant. Any suggestions much appreciated.

Hi Sarah, I totally sympathise with what you are going through and I know exactly what you mean about breathing no longer being automatic. I find this to be one of the most frustrating symptoms of all and am finally going for a lung function test and to see an immunologist to sort these issues out. When I posted last month about my breathing problems, someone kindly explained to me that a defect in the acetylcholine receptors can be the mechanism that causes breating difficulties in some POTS patients. If this is the mechanism that causes breathing difficulties, then substances like Mestinon and (strangely enough) nicotine can apparently help. I really don't know what this all means but thought I would share it with you in case it is another piece in the puzzle you are trying to solve...

Re my last post.... I should have said "MAY" give some clue as to the underlying condition. Unfortunately many of us are still searching for answers even after extensive testing, medical exams, etc.

Hi there, from what I have read and understood from other posts on this forum it is useful to try and understand what type of POTS one has as this will give some clue as to what is the underlying cause of the disorder in that individual. Another reason is that certain medications are contra indicated in certain underlying conditions causing POTS, for example, I think I read that beta blockers are not recommended for people who have Mast Cell Activation Disorder. I am also in a similar position and wish I knew what was causing my POTS. I am finally being referred to a specialist who has some interest in POTS and related conditions like ME/CFS. I am hoping that he will be sympathetic and refer me for further tests if he doesn't know what kind of POTS I have and whether there is an underlying condition present.

The only thing that has helped when I get that feeling (and I always get it if I stand or sit for too long), is to change postural position. So if it happens when I am sitting, as awful and uncomfortable as it to get up, I have to force myself to get up and walk around and then sit back down again. Similarly, if I get it from standing for too long, I need to change postural position and either sit down or lie down. I have found that as I have increased my exercise tolerance over time very gradually this lead feeling has lessened somewhat. Generally the more exercise I can tolerate on any given day, the less troublesome this heavy lead feeling is.

Hi Julie, Thanks for sharing your experience regarding the mall! It's amazing the stuff that goes on inside of us - while we are looking perfectly normally we are feeling anything but! Regarding my appointment: my doctor thought my breathing difficulties are caused by tachycardia and so gave me a very low does of valium to slow my heart rate down. I felt awful on taking it. My resting heart rate is normally around 85 BPM but it went down to around 75 BPM. This also had the consequential effect of lowering my blood pressure which I only finally managed to increase after going on salt tablets (it went from from 60/90 normally to around 75/115 on salt tablets and back down again after the valium). So stopped taking the valium straight away and started taking an asthma preventer. My breathing has been a bit better in the last few days but I am not sure if this is because of the preventer or the fact it has become a bit cooer and drier in the past few days. I will find out no doubt once it heats up again!

Hi, I am half Caucasian (1/2 Scottish and 1/2 English) on my mother's side and half Chinese on my father's side. I have tried to find out whether any of my Asian relatives have had anything like this and so far no one has. I am positive this comes from my mother's side of the family as she also had some brief episodes of tachycardia in her 30s. I would be interested in whether any other persons of Asian descent have this condition.

Hi Mack's Mom, no I have never used an oxygen pulsometer but I will mention it when I see my specialist this afternoon. Two doctors I have seen have ruled out the asthma and allergies by doing a simple examination of my chest and back, listening to my heart and lungs using a stethoscope. One of them said that if it was asthma the breathing would be worse at night and in the morning. I didn't feel that this was a particularly persuasive argument, but not having any medical background I really didn't know what other testing to ask for. I don't actually know what kind of POTS I have. My specialist didn't mention it and I didn't know what to ask when I was first diagnosed. I will be seeing her this afternoon for the first time since I was diagnosed and hope to get some more information regarding diagnosis, treatment, etc. On the topic of MCAD, do any of you ever feel like you have magnets pulling at the back of your head or your body in different directions and all at once? I don't have this all the time but I do have this periodically during the day. On my very bad days it feels like there are magnets pulling at me all day long in different directions. It's worse if I stay in one position for too long. Thanks so much for your suggestions and also thanks to Sarah, Nela and Dianne for sharing your experiences. It helps so much to know that I am not alone in this.

Summer has arrived here with a vengeance and I am really struggling to cope with the heat and humidity. Worst of all is my breathing which has deteriorated rapidly. Normally I do short walk every day outdoors but now I can't even manage leaving the house without having major breathing difficulties. Inevitably anxiety kicks in, making the whole episode even worse. I am taking huge lung fulls of breath but it feels like I am not getting enough oxygen. During these episodes I don't feel I can shallow breathe at all. Breathing is a real struggle. Two doctors I have seen have ruled out asthma and seasonal allergies. One of them has talked about beta blockers. I have read on previous posts that some of you have found beta blockers have helped with breathing. But does this only work because you have tachycardia at the same time? My breathing difficulties start at around 10am every morning and last until 3/4pm. I usually have tachycardia from noon and this lasts until 2pm. So I'm just not sure that beta blockers will work if tachycardia is not associated with the breathing difficulties. I haven't started any drug treatment yet except for salt, as I was only diagnosed with POTS 3 months ago after being symptomatic for over 12 months. Any ideas you have regarding medication would be greatly appreciated. Thanking you in advance.

Thanks so much for all of your tips. Glad to hear I am not the only one as sometimes I feel so alone. My doctors have asked me to take salt tablets first before trying any meds and so far the salt has helped a bit with the fatigue and dizziness, but not greatly with the chest pressure. If this doesn't improve I will take your advice and raise it with my doctor next time I see him. Sincerely, Lotusflower

Hi everyone, I was diagnosed with POTS in August this year and was wondering if anyone ever experiences the same symptoms as me. I almost constantly have a very uncomfortable feeling in my chest, like a gorilla has my chest in a vice and is squeezing as hard as it can, making it difficult to breathe. Recently I had to move offices where I work and I noticed that constant repetitive bending and lifting heavy arch lever files made my symptoms much worse, such that my chest felt like there was a heavy ball of lead in the centre, weighing me into the earth. Consequently I had a major relapse in my symptoms that seemed to last for 3 weeks, with little or no improvement. Does anyone ever experience these symptoms? I would love to know if this is "normal" for POTS sufferers, although "normal" could never be a word used to described what we all go through!! Thanks for any help or advice you can give!!!