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I also have issues with weight - both gaining and loosing it. For the last year, I have been constantly putting on weight - I started off at about 80 kgs, and in the end weighed 100 kgs. Then for no apparent reason (no adjustments to my diet or activities), maybe just a bit of stress, I started to suddenly loose it, and am now 75 kgs - which is great! Now that I can't tolerate cardio and weights, it's great not carrying around those extra kilos. I don't eat much at all either, I never have - I am a vegetarian, and haven't eaten breakfast since I was about 12 y/o. I stopped eating lunch about 1.5 years ago, as it was making me feel 'sluggish' for the rest of the day, even if it was just a green salad. I now only have one meal a day in the evening, after I have done everything I have to do for the day, and can relax. And that is normally salad and cheese, or curried vegies and rice, or even just an avocado with lots of salt on it etc, . I don't eat any chocolate - it gives me a nasty headache, don't eat any sweets - for some reason I can't stand the taste of sugar - ever since I gave up having sugar in my coffee/tea. Maybe the weight gain people are experiencing is the retained fluid from the increased fluid intake along with a salty diet, or florinef etc??

Hi All, I think that the sensation of falling (which normally wakes you up), and sleep paralysis are fairly common - not just for people with POTS, but everyone in general - most people I know have these sensations - I too have them. I don't know if it is 'normal', since most people now days take some form of medication for something, i.e. antidepresants, calmatives, blood pressure medication, anti-inflammatorys etc. I know from experience that many medications can interfere with sleep, and cause unusual dreams. I find both the sleep paralysis and the falling sensation quite scary, as I am sure most people would. It maybe worth mentioning it to your doctor next time you see him/her. All the best.

I can relate also. My hands and feet go numb for weeks at a time - especially my right hand from my middle finger to my pinkie and that half of the hand - generally there is no feeling there at all. It started about 6 months ago - my neurologist isn't quite sure what it is, but believes it is related to the Autonomic Nervious System somehow. It's annoying, but I've learned to live with it. I play the pipes, and it is frustrating, as I can't actually feel the holes on the chanter with my right hand - so I have to rely soley on memory, and just hope that my fingers do what I want them to do. It's a real pain - I hope you can get relief from it soon.

Oooh, now, do they compare with a long haired, dear headed chihuahua?? LOL I think whatever dog you can look after is fine. For me a chihuahua is great, as they don't need a lot of excercise, eat very little and are so affectionate. You've got to remember that you'll have this dog for about 15 years, so it is an important undertaking, especially if you are thinking of a larger breed that requires more excercise and food.

If it's any help, I use a Chinese based vocal chant to help me meditate. | Chiao | Cheng | Kung | Shang | Yu | | Wood | Fire | Earth | Metal | Water | In Japanese of course | Moko | Ka | Do | Kin | Sui | In Japanese there are other pronunciations, but I use these for meditation (as they correspond to the days of the week {Getsu, Ka, Sui, Moko, Kin, Do, Nichi - Youbi}) The rythemnic work helps to calm the mind, and aid in focusing the mind. Well, in my case anyway (most of the time). Lately, I have incorporated "Om Mani Padmi Hung', a Tibetan chant for Compassion. (In Buddhist belief, if you have a mouth, you must recite it. (Ref: Lama Zopa Rinpoche).

Hi Lizzy, I am no expert in this field at all, however, obviously your dog cares for you a great deal. I am sure someone else on this forum can guide you in the right direction.

That's fantastic news! And so inspiring as well! I'm thinking of getting a bike to ride to work over winter (winter in QLD, Australia isn't that cold), and it would only take me about 10 minutes by bike to get to work. I've seen one in the shop that is electric as well - just in case you don't feel like peddling - I think I'm gonna get one of those! Ohh. and it has a baskety thing on the front that my little dog can ride in!!!

I don't think that my little Chynna has been traumatised by the fact that I am ill at times. She seems to love to help. Actually, if the truth be known, if I wake up not feeling well, she seems overjoyed, as it means she will get to spend the day in bed with me, rather than be home alone. I'm so lucky to have her. And, just some of the things she does are just so funny, like the way she decides if I need blankets on me at night, and she pulls them up, or pulls them down. She knows my routine so well - when my alarm goes off, I always push the snooze button - those last 9 minutes have to be the best bit of sleep I get. Chynna pulls the covers over my head, and leaves me alone, and then when the alarm goes off 9 minutes later, she pulls the covers off me, and jumps all about. It's so cute, and so funny. I take her to the vet regularly for all her worming etc, and they tell me that she is a very happy little dog. So, I don't believe she is tramatised at all. I think she likes the fact that she helps me.

I meditate pretty much everyday, and have done since I was about 16 yo (12 years now). When I started to get my POTsy symptoms a few years ago, I moved the cushion that I normally sit on against a wall, so, I have the support on my back, and don't have to support my back as much during the 30-40 minutes that I meditate. I know that getting through the pain of being in the same position is part of meditation, but I believe there are limits - and I adjusted my meditation area to accommodate my POTS as well! Once I am into my meditation, I don't get too many symptoms, but I have had many occasions where I haven't been able to meditate as I am too symptomatic, or simply can't relax enough to focus my mind - it just jumps from thought to thought. You would think after 12 years of meditation I should have far better disipline and control over my thoughts. Anyway, I hope the meditation helps you. It has worked wonders for me, not just for POTS, but for all other areas of my life. Daniel

I think it's a great idea! I have a little chocolate chihuahua, and she really does look after me. I have fairly frequent fainting episodes, and usually come around with her licking my face. After reading this topic, I thought I would give her a little test to see what she would do if I didn't come around - when she wasn't looking I laid on the ground with my eyes shut - she quickly came running in and started to frantically lick my face and nudge my head - then she stood on my chest and barked as loud as she could - then ran outside and barked at the top of her little voice to the neighbours - when she did that I went and gave her a treat and a cuddle. So, apart from the fact that she is my best friend and looks after me (lets me know when it's time for me to go to bed, wakes me up in the morning and pulls the covers off the bed), I have complete faith in her that if I ever did faint and god forbid knock myself out - she would quickly raise the alarm. She amazes me, she seems to know if something isn't right with me. If I have a headache, she likes sniffs my eyes and then gently licks my eyelids and then falls asleep either on me or beside me. I don't know how she knows that I have a headache, or especially the fact that the seem to come from my eyes. Even when she was a really little puppy, and we went to puppy school, they were amazed at how attached to me she was, and espcially how protective of me she was and still is. I should look into seeing if I can get her registered in some way, so that she can be with me all the time, that would be a real treat for me (and her!). She's my little gaurdian angel. Little Chynna, the Chocolate Chihuahua!

Last week I went out to dinner with some friends, something I tend not to do to often, but, this time I felt great! I was having conversations with everyone, rather than sitting there and being quiet and wishing I wasn't there. The dinner was great, and then everyone wanted to move on to a bar, which I did, as I was having such a great time - only drank water all night. Got home at about 11:30pm, and I was restless - I couldn't sleep, couldn't relax, and didn't end up going to bed until 4:30am. Got up to go to work at 8:00, and struggled to get to 5:00pm, went home feel asleep on the sofa immediately, woke up at 10:00pm, and felt awful, I couldn't stand up, my whole body was in pain - got into bed and had to stay there for 3 days - everytime I got up, even to go to the loo, my heart rate went off the scale, everything was greying out, and my body was just so sore - it seemed as though even my hair hurt! I had chills (even though it is in the high 30's here), but no other signs of the flu or anything. No sore throat, no runny nose. On the third day of being bedridden, I got up to get some water, and felt fine again, no aches or pains, no lightheadedness, no nothing. Is this what you would call a 'surge'? It was really bizarre whatever it was.

I also tried it for several weeks, and have tried it off and on since, but I get the GI tract problems - that are just too severe for me. I also suffer from headaches - pretty much all day everyday, so doubt I would have noticed if it was causing them. I also have very vivid and bizarre dreams, so again, couldn't comment. But definately the GI tract problems...

Dr. Pamela McCombe Neurologist St. Andrews Place 33 North Street Spring Hill, Brisbane, 4000 (Australia) Ph: 07 3236 9960 She is my neurologist, and has an interest in dysautonomia.

Great topic! Mine is nothing special - my initials are DG and the 47 in between correspond to their place in the alphabet (D=4 and G=7).

Thanks Corina, I understand. I only wanted to know just in case there was another 'arm' to dinet and I might be missing out on some vital info. I seem to find all the answers I need here. I too am not in the US... Australia, by way of New Zealand, UK, Tokyo and Hong Kong.

I have to agree with Ernie. I took it for a couple of weeks - I felt great afterwards, but then had terrible stomach upsets and diaherra (Spelt wrong, but I am sure there is an 'h' in there somewhere). I believe it can work miracles for those that can handle the side effects. The best of luck with it.

What's a 'linebacker'?

Hi corina, Is NDRF associated *** DINET at all? For me, Dinet is a fantastic resource, if this NDRF is part of Dinet, I might be interested. How do I get to it if it isn't. If it's like one of these alt.binaries - I'm not interested, too many flamers. - Sorry to be off topic of of 'POTS an overwhelming endurance', just I have never heard of NDRF, and wonder who and how it is affilated with DINET since one of the moderators is posting there - and I don't know how to get there...

I'd love to give advise, but I have never heard of it, sorry....

Hi Michiganjan, I would like to add that I had you in my daily mediatations yesterday (I am in Australia, so today in your time). I am not of Christian faith, but strongly believe in miracles and divine intervention, and truly hope that everyones positive thoughts for your partner worked one of **** ******* miracles. Obviously, if Christian faith is allowed on here, my mantra to you is OM MANI PANDME HUNG - it is a mantra of compassion and understanding, and yesterday I dedicated it to you. I know you asked for prayers, I hope in my case this is acceptable for you. It is as strong as a prayer for me. I truly hope all works well for you and your partner, not only in the next few months, but for this new year as well. Truth, Compassion, Empathy, Daniel

I might sound ignorant MightyMouse, but what is NDRF???

Hi BriBri, Welcome to the forum. I can only say that what you have been through seems to be fairly common if you read the posts on the forum. My case was somewhat different as I have both an anxiety disorder and a heart condition - but the prescribed meds didn't seem to be doing what they should - and only by luck was a referred to a neurologist as my doctor feared I may have a brain tumor - the neurologist he referred me to has a special interest in dysautonomia, and apart from testing me for everything under the sun also ordered a tilt table test, which picked up the POTS immediately. And once I learnt a bit about POTS it explained a lot to me, and helped explain the strange symptoms I had been having. My GP and cardiologist had never heard of the condition, so I printed out the info on the DINET website for them, and also gave them the site address - I now have the leaflets to give to anyone that I need to explain it to. In my experience, it is a strange disorder, and in my case I can feel fine one minute and terrible the next. The symptoms for me can come and go and change very quickly. If you can give your doctor some info on the condition, and see a neurologist, you may get some clearer answers. There are some medications available to help with the symptoms of POTS, which you would need to discuss with a specialist. I wish you the best. You will find that this forum is a God-send for helping with everyday questions etc. - Daniel

Happy New Year Everyone also. Thank you for everyones kind comments and advise during the past few months. I myself am planning to find more balance in my life, and to try and remain as peaceful as I can. I hope everyones wishes come true for 2006. Daniel

I posted a poll on here, and have had a message from one of the moderators saying they had to remove it some people found it offensive, and that it was 'rubbing salt in a wound'. I am truly sorry if anyone found it offensive. It was only an attempt to lighten things up, it was never intended to hurt anyone in anyway. Please accept my apologies if you were offended.

Hi Julia, I can totally understand what you are talking about. I think this time of year brings out the strangest things in people. I myself had a falling out with my brother over Christmas for something I don't know about. He lives in New Zealand, and I haven't seen him in 7 years - he has married and had a daughter in that time, and I have never seen his wife or his daughter in person or in photos. I did talk to my brother on the phone about once every 2 weeks, and in our conversation he told me that he managed to complete a four year IT defree in one semester - being at uni myself, I told him I that thought that was highly unlikely - and knowing that he is prone to exagerate a lot, I told him there was no need to do so. He got a bit shirty, and then started to talk about the brand new BMW he had just brought (which also isn't true), and then hung up the phone (for some reason he has always felt he is in competition with me, and resorts to lying for some reason - to the extent where he once called me and told me he had a fantastic new job and was earning over $120K p/a, and had just brought this and that, but could be borrow $10K from me for a while...??) Anyway, on Christmas Day he called me shouting abuse, and told me that if I ever refer to his wife a Shrek again he would come over here and kick my head in, and he no longer wants anything to do with me. Now, why he would think I would call his wife Shrek is a complete mystery to me, I don't have any idea what she looks/acts like. Anyway, there is another old saying that I find helps me "You can't choose your family, but you can choose your friends". I have a feeling my father has told my brother that I said this, as it is something my father himself would say, and it is in his nature to play people off against each other. Although your situation is different, I can empathise with how hurtful family members can be. I trust it will all come out in the wash.