Kathy_Ireland

I also can not tolerate any stimulants but have not found the "tea" I am making using the turmeric as spice to cause any jitters. ~EM Thanks very much for that Earth Mother.I might try the tea too while I'm waiting for the supplements to arrive.They'll take up to 3 weeks it seems .

On a Tumeric unrelated note TeaRose that's quite interesting. I was talking to someone recently who also had POTS and other dysautonomic issues and was diagnosed with CFS. She had taken 2weeks intravenous antibiotics once for an unrelated complaint and felt much better after.She slipped back to full illness again shortly though.On the basis of her reaction she saw a Lyme specialist and started on a two year antibiotic treatment and all her CFS, POTS and dysautonomia symptoms have completely resolved themselves. Her specialist told her that patients who responded to any antibiotics course should definitely investigate possible infections as a source of their illness. You might already looked into all that. Just thought I'd mention it as the coincidence in having recently spoke to her and you mentioning that was surprising . I've just bought my Tumeric online too. Can't wait for it to arrive now. I was just wondering if it might have a stimulant effect though? Does anyone know? I find stimulants very hard to tollerate.

Hi Everyone and Macks Mom, Thats brilliant news that you are feeling better. I'll definitely give this a try. Would you mind sharing what brand of supplement you are using Macks Mom? I've been looking online for it but I don't recognise any brand names.Is any paricular brand of supplement that is recommended?

Sounds to me like your normal for POTS too. I find all those things happen to me also although I never have pain or discomfort if my heart rate drops on lying down.I've had a few holter studies now and all have shown runs of 150bpm pulse rates during my sleep.Strangely I didn't wake on these occasions but during bad phases I regularly do wake with my heart thumping like mad and I often can't lie on my side as I tend to slump onto my tummy which makes my heart rate go into orbit too. Another thing I've noticed is that if I lay on my left side when I feel really ill it can slow my heart rate but make me feel very light headed and weak so I can't bear it for long.It's quite bizzare but I'm relieved to find that other people find this too. I think the "postural" in POTS doesn't always just refer to standing up. How do you know if you have hyperadrenic phases as part of your POTS Earth Mother? Are there tests?

Asking for the non adrenaline anesthetic has made a big difference to my trips to the dentist. A few years ago I had just one filling done with an adrenaline injection and the whole process was very uncomfortable. My heart thumped out of controll all the way through and I was very light headed. What was worse was that I was so exhausted after the procedure that I was wrecked for two weeks.I dreaded having to go near a dentist again after it. A few weeks later however I broke a tooth and had to have it taken out. This time I had the non adrenaline injection and the whole process was so much less traumatic than the filling was. I had no palpitations and no dizzieness and I had no recovery time after it. It was a complicated procedure that lasted an hour and I came away with 4 stitches and minus a tooth but so much better off than I would've been with the adrenaline injection. I found no difference in pain relief between both anesthetics incidently. I've had several dental procedures since with the non-adrenaline anesthetic and I've never found going to the dentist has worsened my POTS since. In my opinion it's an absolute must for all POTS patients. Good luck with it AlmostOK. I fully understand how scarey it is going for these procedures when you're genuinely fearful that you're going to be made feel worse. I hope you'll be as fortunate as I was with the choice of anesthetic and also that you'll be FullyOK one of these days!

I have always noticed that I felt much better at night than in the morning...at around 6pm things tend to start looking up a little bit for me symptom wise. I've always presumd it's to do with blood volume too and sometimes wondered if it's related to the fact that I eat a meal with alot of salt at around 5pm whereas my salt intake is less earlier in the day. That said I find I have more palpitations etc if I eat a meal at all earlier in the day so maybe that theory is just potty as opposed to POTSy! I was just reading the health section of Time and came across an article explaining the frequency of morning heart attacks. While it doesn't address our issues at all it does give some insight into how the heart functions in the morning as opposed to the evening so it might of interest to you . Of most interest to me was a part that said that cortisol and catacholomine production peak in the morning. Perhaps that may go somewhere to explaining our increased symptoms. Also the article states that during REM(dream time) sleep the autonomic nervous system goes through a large peak of activity, even more than when we are awake. During very active dreams in which you're running your heart apparently behaves like it is running! (That would explain why I'm usually so wrecked in the morning! )Maybe we have a harder time than others shutting this response down. That may be of no interest to ye but I thought I'd share anyway.At least the fact that it happens with so many of us means we aren't crazy .There must be a reason for it out there somewhere. Here is the link to the article: http://www.time.com/time/health/article/0,...-full-healthsci This is the most insightful excert from our perspective : The cardiovascular system follows a daily pattern that is oscillatory in nature: most cardiovascular functions exhibit circadian changes (circadian is from the Latin circa and diem, meaning "about one day"). Now, a heart attack depends on the imbalance between increased myocardial oxygen demand (i.e., a greater need for oxygen in your heart) and decreased myocardial oxygen supply - or both. And unfortunately, some functions in the first hours of the day require more myocardial oxygen support: waking and commencing physical activities, the peak of the adrenal hormone cortisol [which boosts blood-pressure and blood-sugar levels] and a further increase in blood pressure and heart rate due to catecholamines (adrenaline and noradrenaline), which show a peak when you wake up. All those factors lead to an increase of oxygen consumption but at the same time contribute to the constriction of vessels. So you have reduced vessel size and reduced blood flow to the coronary vessels.

Thanks a million for clarifying that Mellissa. That doesn't sound nearly as frightening as some of the things I've read about IVIG before and I would take your advise to heart as you are someone who is severely affected also. I am feeling pretty awful and bed bound but I haven't been as severely affected as you thank God. I'm able to eat again now. I'm really sorry to hear you are so unwell. I will say a prayer for you. I haven't had any antibody tests yet. I heard from another Dr who had been speaking to my neurologist that he was very keen to try this treatment with me in the next few weeks. My blood tests don't indicate a need for it but I live in Ireland and as far as I can tell our blood testing is quite limited compared to testing in the US. There have been a few tests now that I have thought and other Drs have thought might be important for me but we are told that they are just not available in Ireland. I have a feeling this antibody test you refer to might be the same. I will certainly be asking about it though! Your replies have really helped. Thank you again and I hope you'll improve .

Thanks for all your replies and thank to Mellisa for taking the time to tell us how you got on with IVIG and to you too Meg for mentioning about your cousin and sister. It's good to be informed about these things before you go for them. I'm afraid the thought of pain and the initial side effects kind of scare me too. I feel so unwell at the moment that I just don't know if I could bear to be much worse. More so it's the fear that I'll be in a much worse state coming out of hospital and that it will take me years to recover from as has happened to me before. Lately I have really found the idea of being so sick in a world where no one really seems to know whats going on with us pretty frightening... it usen't bother me nearly as much before now. I think I'm turning into a big wuss

Hi Ernie. Belated happy birthday and a big huge thanks to you for taking the time to share your story. My birthday was the day before yours and I got sick on the 22nd of June literaly over night 7 years ago now. Reading your post is the best thing that has happened to me for a while! I wish you health and well being and happieness for your birthday and the coming year. Know that by posting that you really made a difference :)

You are definitely not alone with these symptoms. For 5 years solid I felt I was constantly in an elevator.... even lying in bed I'd have those weird and sickening lurches and rushes where I felt I was actually bouncing out of my body. I'm also well used to the sensation of the world moving around me. In the first years of my illness I felt the ground was lurching beneath my feet and seemed squishy and unfirm...I felt like every step was like taking an unsteady leap on a bouncy castle that was mounted on one of those spinning rides in an amusement park.I was utterly disorientated and uncoordinated with it. I always felt a bit crazy trying to describe it but I'm relieved to see someone else has had it too. I really hope you improve.

Thank you both so much for your replies. I did a search as you suggested Dsdmon and I have found some info on it alright. It seems to be refeerred to as IVIG here which is probably where I made the mistake in my previous searches! You're both so good to reply though. This is such a great site. It's so nice to have somewhere so friendly to come where people understand what you're talking about and are willing to reach out to you. Particularly so when you're feeling bad and are confused. You both made my world a bit brighter today

Hi Everyone I have POTS , CFS , NMH,(neurally mediated hypotension) and neurocardiogenic syncope for 7 years. After being intollerant of every medication I've now tried, my Dr has suggested I try immunoglobulin IVs as treatment for the falling blood pressure and dysautonomic aspect of the illness. Just wondering if anyone here has any experience of it either good or bad. After so many bad experiences with treatments I'm very nervous of trying anything that will make things worse. I'd be very greatful for any replies or any insights anyone might have. Thanks for reading

Hi Everyone . I just logged onto tonight wondering about this very issue (Ie. would the pill possily help my POTS) . I feel much better during the last 2 weeks of my cycle. Even if I do get some PMS, physically I definitely feel stronger and my symptoms are less severe. I can do things without as much payback which is great! I find things start improving around day 14 and I feel my best around day 23-28. This is the complete opposite to how I was before I became ill with POTS. Its so distinct that if I plan an outting or a visit from friends I tend to pick these dates because I know I'll be at my best. Then conversely my worst days are day 3 - day 15 of my cycle. Im always flat out sick during this time. Its been a very noticable pattern for the 5years I've been ill. Has anyone else noticed this ? Has the pill helped anyone else ? Thanks for reading

Thanks a million for the replies everyone .I will order a pair of Sigvaris tomorrow Dancing Light. I have rang up several online stockists of compression tights and have had no joy finding antything with stomach support. You will probably have saved me a fortune trying different types! Thank you:) I'll try the website you reccomend. I live in Ireland but I think they have international delivery. I have considered something along the lines of lipoinabox too. I might well invest in some.... feeling better and looking more svelte would be no harm! The cycling shorts are a good idea too. I really appreciate you all going to the trouble of replying to me.

Hello again everyone. I recently bought a pair of Mediven Elegance pantyhose . I was measured for them and although there was some confusion over whether Im petite or not I was assured the general size would be best for me. I have just got them in the post however and they really look awful . My legs aren't heavy but in these tights look like I've got a tight elastic band around the top of my thigh which gives the effect of a less than gorgeous bulge. It is so bad that I couldnt even wear them out with a skirt . Its extremely uncomfortale too. Is this a problem many people have experienced with supposedly well fitted tights ? Also these thights provide no support around the tummy/waist which makes a big difference to how I feel .Has anyone else found that some compression around the stomach helps them? Has anyone discovered a brand that provides some degree of support in this area? I have had to get my local chemist to order these tights so I cannot return them . As they don't stock them they know nothing about things like what stomach support is provided in the tights. Their stockists seems just as much in the dark. They are so expensive that I cant really afford to try another pair and find they are a disaster too. I want to research my next buy a bit more carefully. Any advise would be greatfully recieved. Thank you.

All this time I thought it was only me who got that feeling .... I'm relieved to see I'm not alone . I could never properly describe it. The only analogy that comes to mind for me is that it feels as if my entire body has been turned into a tuning fork thats just been twanged. Its a simmilar horrible sickening perpetual buzzing right up through me ... as though all the atoms in my body are vibrating at a low frequency. Anyone who has it has my upmost sympathy . I've only had bad experiences with any medication that I've tried. They've all really exacerbated any of my 'odd' symtoms like the buzzing . The only thing that helps for me is lots and lots of rest.

Hello people , I was wondering if many people are finding that support tights are helping to alleviate their POTS symptoms? I have tried several brands from my local chemist shop but havent found them to be of great use. I think that maybe they arent strong enough . Is there any brand that anyone would recommend ? Thank you Hope evryone is having a "good" day

Hi Everyone , I'm new here. This is my first message . Its great to have found some fellows POTS sufferes as I know nobody else who has it . I'm 26 years old and I've suffered from POTS as a symptom of CFS (or perhaps a cause.. who knows!) for 5 years now. I have been completely bed bound for all that time . Recently I had tests and found that my thyroid was slightly underactive. I tried 25mg of Eltroxin (thyroxine) but after 3 weeks I became very sick . My palpitations became unbearable and I felt utterly awful. I was told to come off it and have improved since I did . I was wondering if anyone else has had a similar experience with Thyroxine . Is intolerance to it normal in POTS suffers ? Has anyone found any alternative treatment that was useful to them such as Ardour ? Thanks to anyone who reads this or replies ! And thanks also to Mighty Mouse for the help getting started here