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I agree with Bren. Magnesium has really helped with my resting pulse rate and also makes my heart feel better. Anecdotally, it would seem quite a few POTS patients have been helped by Magnesium. The other thing I take when my heart is going nuts is Hawthorn extract (in a herbal tea). It actually slows my heart rate down and makes it feel better. It is particularly helpful for me when the type of tachycardia I am experiencing is the forceful almost painful heart beats. I seem to be able to take it for days at a time and throughout the entire day when needed. While I tend to have low'ish blood pressure, I seem to be able to tolerate Hawthorn when I am feeling very tachy without it lowering my BP too much. I took Hawthorn before I went on Florinef and after I was on Florinef. It did not interact negatively with this medication. Hope you feel better very soon.

Steven, this probably isn't much consolation but when I first got sick with POTS I also felt worse lying down. I had constant and severe chest pressure whether I was lying, sitting or standing and I actually felt really giddy when I was lying down and any time I changed position. I felt much better when I was moving around but like you I also got very tachy quickly and tired and then had to sit or lie down again. I hope that just like me, this symptoms will improve for you over time. Over time the giddiness slowly started to dissipate and the adrenal surges I had when lying down calmed down too. I still get them sometimes but not as often. In fact now I am quite the opposite to how I started off with POTS. I feel better when I am just sitting still or lying down. I don't know if that is a good or bad thing because I've noticed I am not as comfortable at walking longer distances. But at least I feel more at ease within myself just sitting or lying whereas I didn't have one moment of peace in the beginning.

Slightly off topic, but Issie that's so interesting that you mentioned that hyper-POTS have a tendency to have blood vessels that constrict, hence the purple feet and hands. I have the inappropriate vasoconstriction happening on my extremities but low blood pressure. On Florinef it's much better. Makes me wonder about the various classifications of POTS and how helpful they really are, especially with regard to treatment.

Hi Bren, I wonder what compression you are using? I felt quite agitated, tachy and like my chest was going to explode from extra pressure when I was in 30-40mmHg. It felt like all the blood that normally pools in the lower part of my body had suddenly been transmitted into the top part of my body (which is probably what it's meant to do), but it made me feel mightly weird and I didn't like the feeling. But I seem to be able to tolerate 20-30mmHg. Even the lower compression 20mmHg has some effect for me although not as good as the higher compression. Hope the body shaper help you. Let us know.

That's amazing Jan. It was on the news a few months ago how a dog detected cancer in his owner and kept barking and licking near where the cancer was. I can understand the cancer because it probably does emit an odour undetectable to the human nose, but I can't understand how the dog can sense her BP change. If you find out anymore please let us know.

Tomatoes now set me off. Never did until I started drinking large quantities of tomato juice to boost my salt intake. I also seem to be sensitive to gluten products although that waxes and wanes. More recently I am having trouble with nutmeg and other spices (giving me breathing issues). Songcanary - what food drops do you take? Are they homeopathic?

I'm finding this a hard one to answer emotionally and haven't voted yet. I am wondering if I need to come to terms with a new "normal". Three months ago I was feeling the best I'd been for a very long time. I was getting out every day, walking in the park, taking classes, seeing friends, etc. I was by no means normal (still had breathing issues, tachy) but it was very manageable. I would say I got to the point where I was having 4-5 good days a week which was the best I'd been since getting POTS. Fast foward to now and I'm still recovering from a nasty infestion in August. For the first 2 months every day was bad. More recently I've had a good day here and there, but I'm still too unstable to vote properly. Thanks for posting this Poll though, it's very interesting.

While that may be true concerning advances being made in terms of understanding causal mechanisms, I really don't feel that some of the specialists I've seen are any the wiser on treatment options. I saw another POTS specialist recently and he wasn't convinced that understanding the type of POTS or the cause of POTS was helpful in determining treatment options. In his opinion it was a case of whatever works for the patient is what can be prescribed. He said that at the end of the day, doctors just want us to feel better. I raised Chinese medicine with him and he said as long as it makes me feel better why not try it? I tend to think that if Integrative Medicine helps a patient feel better, then we should consider it given that there is currently no cure for POTS.

Sue, I've come to this topic a bit late but are you aware whether low blood sugar after eating can also cause difficulty breathing?

It took 1 year from the initial onset of POTS symptoms (or 16 months if you include the first 4 months of feeling generally tired all the time and being told I just had post-viral fatigue). I really feel for people who've had to wait a lot longer than this.

I saw something once in Phoenix Rising about Acetylcholine toxicity as being a possible cause for ME/CFS sufferers. I would suggest going onto their website and searching for this as from recollection they may have had suggestions on how to reverse this.

I get this if I bed over and straighten up too often or too quickly. I get the greying out of my vision, I see black and white fuzzy stars and sometimes my vision goes completely. Other times all I see is white. Just like Dani this lasts for around 20 seconds. The specialist I see who runs the blood pressure disorders cinic at a major hospital advised me this is very common in people with low blood pressure. I just wonder if your son suffers from low blood pressure at different times. I don't get this often anymore, but there was one time around 15 years ago when I got this every time I bent over and straightened up. It wasn't pleasant when it happened that often (daily) and it took my breath away.

That's fantastic news Christy. If he's in recovery, can they wean him off his meds (listed in your signature), or is it still too early to say? I've always wondered what people do when they're in remission/recovery - whether they have to keep being diligent with meds or whether they can be medication free until the next relapse.

I probably could work (part time or casually) at the moment if I found the right job (not an easy task!), didn't mind having a poor quality of life and feeling sick a lot, but have chosen not to for the present time. I was diagnosed a year ago now, and after pushing through a stressful job for the first 2 years of my illness I just need a complete break. The last 6 months of my job were at times horrendous when I felt on the verge of collapse. A common theme I have gleaned from this forum is that while many people choose to work, it can come at a price. I really hope to work again and have some sort of a quality of life, but I don't know if it's achievable at the moment given my current health.

I don't know Lieze but my Osteo said that with me I always have a build up in my lymphatic system and she firmly believes that is part of the problem with my POTS. I never knew I had any build up and it certainly is not obvious. If I remember correctly she said that in every human the left side of the body is always more challenging than the right as lymph drains into the left central side of the body (heart, lung area, which incidentally is where a lot of us are affected). I am also affected in my neck too. When a person is sedentary it is even more difficult for lymph to move and drain as there is no "pump" like the heart to pump it around. She believes I need to keep massaging the left area of my body under my left armpit and do left breast massages to stimulate the lymphatic drainage. In fact this is recommended for a lot of people I believe. I've been a bit slack over the last few months and it's possibly contributed to my breathing being much worse. Also my osteo hasn't been doing lymphatic drainage on me for a while because it was so painful the last time, but I think I need to suck it up because it seemed to really help.

Hi Tennille, I'm sorry to hear you've been through such a rough time. This may not be a direct answer to your query but before I started Florinef I swear that Cranio-sacral therapy made a big difference to my overall functioning. It works on the parasympathetic nervous system but in my experience I believe it balances out both systems (para and sympathetic). I would often feel wiped out for 2-3 days (sometimes longer) after these treatments, then I would have around 4-5 "good" days and then I would slowly start to get more symptomatic until my next treatment which would be fortnightly. Before these treatments it felt like I never had any "good" days. In these "good" days I was less symptomatic (not as tachy, not as breathless, less light-headed and feeling like I was going to faint). I usually sleep really well after one of these treatments but I do tend to feel quite tired after, but it isn't the same "sick" tiredness that I get with POTS. It's more a healthy kind of tiredness if that makes any sense! I also feel better emotionally and less anxious. The cranial work is fantastic and I can feel heat and energy in my head and in my brain while she works. I often fall asleep during these treatments as it is so relaxing. Neither sacral and cranial work are rough like physio or any other type of massage. It is very gentle and you hardly feel it at all. You lie on your back the whole time and the therapist places their hands underneath your back while you are lying down. I can elevate my legs if I feel like it and I can also rest my head on a pillow if needed. I was so scared the first time I had this treatment that I was visibly shaking. I didn't know if it was going to make me worse but to my pleasant suprise it has definitely helped. Some osteos who do this type of treatment may also do lympatic drainage and biofeedback therapy. I've found the lymphatic drainage very painful but effective. My osteo always finds a build up in my lymph system and through releasing whatever she finds in my system it seems to helps my breathing more than any other type of therapy. However I'll often get a temporary worsening of my breathing before it gets better. Sorry, this is longer than I intended but I just wanted to put this out there in case it might help. Take care

Dani, I really get what you're saying about running off adrenaline during the day causing the night surges. I also tend to get these at night after I've done too much during the day or at night. I once tried to stay up until midnight because we had friends over and was so exhausted that when I came to bed I had an adrenaline surge and was wired all night. Have you tried ice on the soles of your feet? For some reason it actually helps me when I am having these surges. I usually try to sleep with ice on my feet all night long. I also put a small square pillow under my thoracic area right beneath my heart and lungs and sleep with my chest raised and my head on a pillow. This seems to help with the really uncomfortable thumping fast heart feeling. Sometimes hawthorn extract helps me too. Don't know why. I know this is a traditional herb used for heart health and a good heart tonic.

I used to get a feeling of a heavy anchor pulling down at my chest and this happened in front of my doctor who took my pulse at that precise moment and said my heart was too fast. I didn't even realise it was my heart, just knew something was very wrong. But this was at the very beginning of my illness. I don't seem to get this as much anymore. My adrenaline surges are different to that heavy anchor feeling. Adrenaline surges for me happen at night and they go on all night. My heart will be beating very fast while I'm lying down. I'll be sweaty and shakey and 'wired'. I won't be able to sleep and every time I am about to drop off I'll be woken by my heart doing a sort of "thump". Very hard to explain. Haven't had one of these for a while but they are awful. Sorry you have that heavy pulling feeling in your chest. It's just an awful feeling.

This is very interesting everyone, thanks for the responses and keep them coming. Sallyblooms, I'm curious about your CFS which you had before POTS. A lot of people with ME/CFS also describe having the same POTS symptoms as you. I am guessing you never had the orthostatic intolerance before POTS came along?

I've always assumed that it's normal for our predominant dysautonomia/POTS symptoms to change on a year by year, monthly (or even weekly/daily basis), starting with a constellation of symptoms, and having several of those becoming more pronounced at different times while others take a back seat. But I'm starting to wonder if I'm wrong. I can see very clear phases in my illness, starting off with adrenal surges being predominant; then severe chest compression 24/7 taking over; and now shortness of breath eclipsing almost everything else. But even if the adrenal surges aren't predominat, I can still feel them lurking in the background. Do any of you still have the same symptoms only to have them wax and wane in severity over time? Can you identify various 'stages' in your illness? Or have brand new symptoms emerged as time has gone on? At this point I don't feel I am on any kind of a linear trajectory. I feel like I am inside a lottery machine and have no idea what number is going to come out next. I am still dealing with the same numbers I was given at the beginning, but I'm afraid a new set of numbers could be added to the machine. Obviously this is quite a complex issue because many of us have discovered we have other medical issues at the same time. Throw medication into the mix and that can change things for us too. I'd be interested to hear how you started off, where you were mid-point and where you are now.

Wow Lieze, so do you think Macrocytic Anaemia could have been the problem all along for you? Did they ever check for it when you went to ER all those other times? How do they test for it? Are you feeling better now with the Slow Fe?? sorry for all the question, just very curious...

Hi Shoegal, I know my potassium is getting low when my breathing gets worse and there is no other logical trigger for its worsening (ie, heat, humidity, over-exertion, illness, etc). This breathing crisis is often accompanied by a feeling of indescribable weakness, exhaustion and brachycardia or tachycardia. I'd be interested to see if 20meq twice daily is enough for you. Are you taking Florinef? My potassium got as low as yours and 20meq twice daily was not enough for me. I am now taking 6 Chlorvescent tablets daily (which I think is 84meq potassium daily) and now getting K+ serum readings of around 4. It took a while for my blood serum levels to rise to that level though (around 2 weeks). What were your symptoms that made you need to go to ER? What list of symptoms do they say you need to have to come into ER?

Hi S-Spot, sorry I only just saw your post now, but wanted to say I have had very good results with Valerian so long as I don't overdo it, ie, take too much of it. It doesn't seem to adversely affect my blood pressure or heart rate in any way. A herbalist has made me up a great mixture of Valerian, Skullcap, Melissa (all traditional nervine herbs) and they give me a great night sleep and are also very handy during the day if I'm getting too anxious about something and need to calm my nerves. I haven't heard too many people on this forum say they've had bad reactions to Valerian, and from my search on previous posts it would seem many have benefitted from it. I hope you find it beneficial too. Good luck with your new roster, I would be a bit anxious too about such a drastic change in my routine.

Hi Kate, I'd love to find out more, including their website. Is this their website? http://www.integrativepsychiatry.net/index.html I am not in the US, however some basic information about who they are and what they do might help me find where to look in my own country. Thanks everyone, glad this test has helped you all.

Thanks Tablet and Sallyblooms for the info.