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I have had really good results from homeopathy that cannot be put down to coincidence or fluke. The first time I took homeopathy was post surgery years ago and I went from feeling extremely nauseated from a general anaesthetic to no nausea at all the second the remedy hit my tongue. Homeopaths sometimes prescribe homeopathic Arnica post operatively which in its pure form is a poison but in a homeopathic form it is extremely effective post operatively. I have also used homeopathy for my POTS at at time I didn't know I had POTS (as no one could diagnose me). My homeopath prescribed several remedies before we got to the right one. We went through Sulphur, Lycopodium, etc, before finding Phosphorous. Posphorous significantly reduced the horrible chest compression I had and also reduced the tachycardia (both resting and exercising), but only temporarily. Unfortunately my homeopath wouldn't permit me to continue taking the Phosophorous remedy as he works from the principle that if it doesn't cure the symptoms permanently then I needed to go onto a constitutional remedy. The constitutional remedy he prescribed was Tuberculinum (related to Tuberculosis). This made my chest feel heavier and more compressed, and took me off it and sent me to get sacro-cranial work done by a Osteopath as he believes I have some structural/muscular issues in my thoracic region which need to be corrected before the Tuberculinum works. I'm not sure he's onto the right remedy but I am willing to re-try Tuberculinum again once the thoracic issues are sorted out. The bad thing about homeopathy (like any medicine) is that it can make you feel worse if you get the wrong remedy, but the good thing is that there is always a antidote. For example, to counteract the effects of Sulphur you take caffiene. I am currently taking a homeopathic remedy that supports my nervous system and helps with anxiety. I have had good results so far and have gone from dreading the thought of leaving the house for fear of how I'll cope (POTS-wise) once I've left the house to actually feeling okay about going out on my own, notwithstanding there is every possibility I could feel awful once I am out and about. I hope that you have some success from homeopathy if you do decide to try it. But I need to warn you that it doesn't work for everyone. Some people have told me that they feel absolutely nothing on homeopathics, nothing good or bad. So you won't know how you react until you try it.

Sorry to hear so many of you had bad reactions to it. It seems the most common reason people go off it are increased headaches/migraines and increased blood pressure, although some of you seem to have experienced other serious complications from taking it. Thanks very much for all of your responses.

Thanks very much Sallyblooms. I live in Australia and suspect that Integrative MD's go by a different name here. I did a search and this is the closest thing I can find to the type of doctor you are describing. Does this sound similar? http://www.nutritionmedicine.org/patient-information.html

The herbs I use to calm the nervous system are well known nervines prescribed by herablists. These include melissa, skullcap, valerian, passionflower and chamomile. A combination of these herbs really helps calm me down. They do have something akin to a tranquilising effect. I have found them to be invaluable during times of great stress and anxiety and they have in turn helped keep my POTS from getting really bad. They can be taken even if you are not feeling anxious and can be used as a tonic for the nervous system. They also help increase the quality of sleep. There are a number of essential oils that apparently have a heavy sedative effect. These include pure essential oil of jasmine, valerian, jonquil, hops, and some others. They are very difficult to get hold of in retail stores as they are very expensive. I have just made my first purchase of Jasmine which cost me over $100 (on sale). I believe they can be purchased on-line. On another note, just in case you happen to be taking slippery elm powder, I would not take it with medication and would only take it for several hours after taking medication. I was initially taking it with florinef and subsequently found out that it reduces the effect of medication. Good luck, I hope you find something that works for you.

Thanks for sharing your experience and please keep us posted on how you go in the months ahead.

Many member's signatures state that they used to take florinef but no longer take it. Just wondering how long you were taking it and why you stopped, particularly if it was working for you? How difficult was it for you to wean off? Are you now taking something that works as well/better for you? Or are you now feeling stronger and no longer need to keep taking it? I am on 0.1mg florinef daily and I believe it is helping some of my symptoms. I am at the cross roads where I will have to make a very difficult decision about a direction in my life, and if I take one directon, forinef will be off the cards. Any input would be most appreciated.

Just out of curiosity, what is an integrative doctor? Do they have additional qualifications to a primary doctor? How do they advertise their interest or specialisation?

I suspect that Florinef has helped cool me down a bit although I can't say this conclusively because I only started taking it in autumn (March) and it's now going into winter here. This winter I seem to be coping a bit better with warm indoor environments. Last winter when I wasn't taking Florinef I was not tolerating warm indoor environments as well. I have read elsewhere on this site that some people feel cooler on midodrine and mestinon. One person said they felt quite cold while taking midodrine.

I got these every night until I started taking in extra salt. I now take 3000mg salt tablets daily on top of salty food and beverages, etc. My doctor told me this would stop the night sweats for me and he was right. Not sure if you're already taking extra salt, but if you are not perhaps try and see if it helps.

Leize, I go through phases where I'll have a POTS flare, bad tachycardia in a shopping centre or while out walking, or severe shortness of breath or awful pre-syncope while out and about or sometimes all three at the same time, and after the event it takes me such a long time to build my confidence back up to go back out and do stuff in the world. I find it helps if I have a supportive person with me at the time I am attempting to go back out into the world again. I think I read somewhere that your mum has been a help to you. Perhaps you could start by going with her to do something very quick and simple outside the home that doesn't take too long and not too much energy, and then return home straight after, and slowly build on that and keep accompanying her on little errands or trips until you have the confidence to do your own small trips, etc. That's what I've had to do each time I have a horrible POTS flare up. I am usually incredibly anxious the first time I try to do stuff again, but it gets easier over time as I keep trying. I agree with Songcanary that you have to train your brain to be less anxious about going outside by building up either neutral or positive experiences to doing stuff outside in the world.

Good luck Caterpilly, I really hope this gives you some relief from your symptoms and also helps heal at a deeper level. It doesn't seem all that strange to me that colours can heal, given that sound therapy can also help with various conditions. Please keep us posted on how you go.

Elizabeth, sorry you are feeling so poorly. It sounds like you may have a similar problem to me in that you can't cope with temperature changes. I (maybe like you) am much better once I have adjusted to warmer weather but last summer it took me nearly 3 months (all of spring) to adjust! Then in the heat of summer I was the best I'd been for several months. The same thing happened the previous summer. Cooling vests have helped me tremendously when going from a cooler to a warmer environment. I will keep it on until I start to feel cold, then can sometimes take it off. Frugalmama where did you purchase your cooling packs from? My cooling vest is really effective but looks pretty daggy. I'm thinking of sewing my own cooling vest and buying the cooling packs separately. Unfortunately CoolSport has not been helpful to me and hasn't responded to two emails I sent them (I live outside the US).

Hi Mggirl, sorry to hear you are not feeling well after having your blood drawn. Unfortuantely it was having my blood drawn that seems to have triggered my POTS in the first place. I had post viral fatigue syndrome in June 2009 after a virus, but 2-3 months after onset I had to do a fast overnight before getting my blood drawn to test for diabetes and that blood draw together with caffeine and doing yoga (lots of bending over) all in the one day seems to be what really set off my POTS symptoms. I don't remember ever having such severe symptoms with post viral fatigue until that trifector! I remember feeling quite weak and really strange straight after the blood draw, and I have never felt the same since. I did a standing tilt test a few months ago and was already dehydrated before this as I'd had had a one hour medical consultation prior to TT, then did the TT, then had my blood draw straight after. I felt absolutely awful after and had a major POTS flare up for a week until I started back on Florinef. I wish I had some advice regarding what to do to prevent POTS flare ups from blood draws, but I definitely think what you are doing with being very hydrated before going into do this is a very wise first step.

I really feel for you caterpilly, mwise and other potsies who are going through such a hard time with spring going into summer. I wish I had superhuman strength to blow the cold antarctic winds from the south right up to you. I'm the same caterpilly, even in the depths of winter I am not symptom free, but at least I feel a bit more comfortable. I really hope it is not a bad Summer for you guys this year.

Beautiful poem, Kyler's mum, it brought tears to my eye. You express so beautifully the strong and deep love you have for your son. I really relate to this poem as I am a bad in hot weather, better in cold weather Potsie. (It's cold here in the Southern hemisphere where I live and I am loving it). I also find writing poetry therapeutic and transformative at times. I hope that having a medium by which to express your deeply held feelings is a source of comfort to you.

I have been taking Florinef for nearly 2 months now and have noticed that while my resting HR seems more settled, my exercise HR has really been spiking more than is usual for me. I'm trying to work out if I'm just becoming more exercise intolerance in spite of exercise! or whether this could be a possible reaction to the medication. Has this happened to anyone else on Florinef?

Thanks for replying to my post. On discussing this recently with another Potsie I was told that the device helped her OI symptoms, but as she did not have breathing problems specifically she can't say if it would help with SOB. She told me Vanderbilt University is currently undertaking clinical trial on the effectiveness of ITD to treat OI - details as follows: http://clinicaltrials.gov/ct2/show/NCT00962728?term=orthostatic+itd&rank=2

I revived this old thread to see if anyone persisted with the the breathing method described by Simmy and other members or purchased the Impedance Threshold Device? I am still trying to find something, anything, that will help with my breathing and was wondering whether anyone has had good results with this device or a method similar to it and whether it's helped with their breathing? FYI... no one will prescribe me any meds for breathing until I have done first lines of treatment (forinef, then probably midodrine if that doesn't work), which is why I am still looking for alternatives at this stage..

There is a good resource available from the Royal Prince Alfred Hospital in Sydney, Australia that can be mail ordered and delivered on strict elimination diets for food intolerances. They have a website. I decided to go down this path as the blood tests on food intolerances are not conclusive, and I have been told by several doctors that the only way of truly ruling in or out food intolerances is via a strict elimination diet. I have therefore purchased both the book that explains intolerances and the cooking book that assists with a strict elimination diet. It has easy recipe suggestions for gluten free, dairy free, egg free, soy free, and low chemical diets. I have been told by a dietician that you should do the fructose free diet separately as otherwise the diet is too limiting, but she has had clients that have done both at the same time. I am going to start the strict elimination diet in a month or two.

Good on you Lieze for leaving that group. I could see it was causing you a lot of stress and I think it is commendable that you just got up and walked out in those circumstances. I did the same thing very recently with my job which I have held for many years. I freaked out completely in the beginning as I wasn't sure I'd made the right decision, but now I think I definitely have. I am feeling nowhere near as stressed and am starting to enjoy a few things in life again. Don't get me wrong, I am still very limited in what I can do, but I now have the energy to do a couple of things I like doing which I didn't have the energy for when I was working. I am hoping to one day work again but I am going to have to be very careful about picking the right work environment.

Hi Misstraci, I have come to this Post a bit late, but just wanted to share a few things that helpd me. I only recently saw a good POTS doctor, so between my diagnosis last August and seeing the specialist this March due to a long waiting list, I had no choice but to use alternative remedies in an attempt to get some sort of relief from my symptoms. This is what has helped me in the past: Homeopathics really helped for a while before I even knew I had POTS. I found a very good homeopath who treats patients using simplexes. The one that worked for me was phosphorous and it lowered my heart rate (both resting and exercising) and significantly reduced the incredible chest pressure I was experiencing. It also helped a bit with my breathing. The only problem was I was only allowed to take it 3 days in a row, and after about 7 days the effects would wear off. Because my homeopath was a purist, he insisted I discontinue the phosphorous if it wasn't having a permanent effect. I am currently seeing a different homeopath who is not a purist. This homeopathic treats the nervous system. I am taking it in conjunction with Florinef. I am told that because homeopathics work in a completely different way to medicine, it is safe. Don't know that my POTS specialist would agree, but so far I am not noticing any adverse intereactions. Chinese medicine has helped me with my gut issues. Accupressure in particular has been very helpful, but it is a very slow process, and there are no instantaneous results. Finally, sacro-cranial massage has I think helped with the dizziness a bit (prior to Florinef) and also helped ease my breathing issues, but this is a very difficult symptom for me, and it continues to wax and wane, but isn't as bad as it was 4-5 months ago.

That's interesting, please keep us updated on what you Endo finds and how you go off the Florinef.

I wish I could give you some advice but unfortunately I am having exactly the same issues as you and I have been exercising for nearly 15 months now. What is even more frustrating is that during the middle of last year for about 3-4 months I was actually really good with exercise (was able to walk for 30 minutes up and down very steep hills near where I live, etc). But after several relapses, a bout of the flu, etc, I have not yet recovered to that same level. I also have new symptoms, ie breathing issues, which make exercise very challenging. Someone who is doing Dr Levine's exercise programme recommended recumbent exercise which I am about to try, but I can see you are already doing this. Thanks for posting this. I am interested in seeing the responses.

I am having the same thoughts as you... When I first took Florinef it definitely helped lower my resting heart rate (I have sinus tachycardia as well) and with tachycardia generally, but now doesn't seem to be helping with these issues anymore. I am also keen to hear if anyone else is having/has had similar issues. For me, it still seems to be helping with the dizziness and pre-syncope feeling, but not sure if it is worth taking a corticosteroid for just these symptoms when I have so many others. Then again, maybe I've just forgotten how bad I felt before taking it!

Oh Bev, I can so relate to what you are going through now. My husband also has two siblings who do almost nothing to help their elderly mother. My husband works in a stressful full time, has been stressed looking after me, and also looks after his mother who was just diagnosed with cancer late last year. At the same time he was looking after me, he was also going over and taking his mother to radiology and doing a tremendous amount around the house for his mum. His 2 siblings who do not work and have no health problems or other issues preventing them from doing so, did very little to help. My father in law died a few years prior to this from cancer, and again, it was my husband who looked after his mum and dad at that time. The two siblings were nowhere to be seen. I also get angry and resentful and have felt like doing exactly what you have done, but have refrained because my husband still wants a relationship with his siblings, (not sure that your husband still does), and I know that his siblings would not accept any home truths, especially coming from me. So I know the whole exercise would be counterproductive and would just get my husband angry and resentful towards me and result in his siblings never speaking with him again. But I understand why you did what you did, particularly when you have been dealing with your illness for so many years, and this situation with your husband and his family for many years longer. How you are feeling and what you are going through is completely understandable in light of your situation.