ana_22

yep i am the skinny obese! I am 55 kg and 157cm tall. i am 33.26% fat. I had this test done by a DR where they stick something to your hand and measure impulses or something like that. to try correct this im eating and drinking alot of protein. im also doing resistance training (cannot tolerate being upright to do exercise) im doing this by doing very very very slow repetitions of movements using weights and rubber tubing. ive always been skinny obese, i remember having a gym assessment done 5 years ago (pre pots) and my body fat was 30%, they measured it a different way (i think the pinch test).

Wishing you start feeling better soon. Your in my prayers. xxx

My prayers are for you!

hi, i have developed a new symptom, my ears have become quite sensitive only not to loud noises. its the little noises that seem to bother them. like i could hear the door opening down stairs and my left ear will prick up and kind of have a small stab of pain. can anyone relate? does anyone have any ideas what could cause this? could this be a nerve thing? its quite annoying and has the potential to become quite painful. thanks for your input/suggestions! hope everyone is as well as they can be xxx

Did everyone that is using this cream successfully have a test to see whether they were b1 deficient? If so, were you very deficient? and how long did it take for the cream to have some effect? thanks

yeah not sure i just know that Dr Byron Hyde and his team have done alot of study into it and it is def diagnosable with SPECT. (i should really ask my sister the technical differences, shes a radiographer!!) This is DR Hydes site http://www.nightingale.ca/ out of interest, has anyone read any of his stuff and what do you think?

I was just about to post something on this Linda Joy!!!!! I have been doing a lot of research as my dr now thinks this could be by diagnosis... ME is not what most people refer to as chronic fatigue syndrome. It is so much more than chronic fatigue. I haven't got my head around everything yet but i do think it has something to do with your body not being able to fight off a virus that then manifests into ME (not sure about that though). What i do know is that is diagnosable through TESTS and it is not really a diagnosis of exclusion. The SPECT MRI and vEEG are the best tests, there are some blood tests that you can do prior to these that can kinda put you on the right track. Im seeing my DR next week and we are going to go through some of the tests and see what we can do. I have already been diagnosed with POTS and it is true something like 95% with ME have POTS and most are orthostatic intolerant. The reason why i think its so important to test for ME is that research has shown people with ME need to REST and that exercise harms and exacerbates the condition making it worse and the chance for recovery much slimmer than it already is. When i was diagnosed with POTS, the DR that diagnosed me said i should try and exercise as much as i can. So it makes it quite a tough situation, i don't want to exercise and ruin my chances of recovery if it is primary ME. But i don't not want to exercise and ruin my chances of recovery if it is POTS cause deconditioning makes POTS worse. Also apparently ME is acute, which my POTS onset kinda was ( a month of lower back pain and nausea and then wham 6 months bed for me!!! and still mostly in bed) www.ahummingbirdsguide.com is an excellent source of information about ALL things ME. Just wondering has anyone had a SPECT mri of the brain, i think they may be called MRA or something? I would love to hear what others think once having a look through the site!!!

Thank you to everyone for your replies! i am going to ask for a sleep study next time i see my dr. thank you for the meditation offer earthmother, i will pm you if needed. i am currently using a white noise meditation and also have another meditation by ian gawler. ill see how it goes! thankas again!

just wondering what kind of visual symptoms people get? when upright (and sometimes supine) i feel as if my vision is pulsating, very mildly. When reading the newspaper i feel like words are moving, not the words im looking at but the words on the edges if this makes sense. Sometimes i also get a dimming thing happening. it feels like someone has dimmed the lights for a second. can anyone relate?

Since i got sick with POTS earlier this year (MARCH) i have had a problem with sleep. At the start i was having trouble falling asleep, staying asleep and waking up very early (5am) At the moment I have a little trouble falling asleep, but my main problem is staying asleep, i wake up every 2 or so hours. no matter what i do i cannot get a full night of sleep without waking up. Pre-pots i had no problem staying asleep! i would sleep the whole night through, sometimes even up to 10 hours. Its so annoying because this happened overnight, just like the rest of my symptoms. Early on my dr gave me diazapam, even taking this the most i would sleep is 3 hours, so i stopped taking it due to its addictive tendencies. SO its been almost 7 months without a proper nights rest!!! I think this could be impacting my bodies healing process as i know your body does its healing while you are asleep. Does anyone else have problems similar to mine? is this indicative of a certain 'type' of pots? has this resolved for anyone? what has helped? I am not on any drugs that would interfere with sleep. i only take 15mg of avanza before bed (this is meant to make you sleepy) and anyway i had the problem before taking avanza. i have tried hot baths, hot milk, chamomile tea and alot of other things i cant remember! thanks

***Happy Birthday***

I've had a better read of the Marshall Protocol.....still not a thorough one though! Like Firewatcher i too have alot of questions! I'm a firm believer in looking outside the square and delving into alternative treatments. Alot of POTS/dysautonomia patients are left disillusioned by conventional dr.s & therapies that i guess its only natural to search for answers elsewhere. Im in Australia, so i guess theres even less accessible specialist knowledge! When i first went to my cardio he didnt even want to test me for POTS (i told him i had been bedbound for 4 months, had a couple of bouts of tachy, had severe constant nausea & constant dizziness, and generally did not feel well standing!) I had to insist on getting tested for POTS. When it came back positive he simply advised my gp to up my water and salt & said he would not need to see me again!!!!!!!! He even admitted hes only seen 2 cases of POTS in his whole career, imagine having cancer or diabetes or a stroke and hearing your dr has only treated 2 cases EVER! would you think he had all the answers? Im glad that people are theorizing, experimenting & taking risks in order to find answers! I've had a quick read of what Dr William Davis has to say about the mp but then again whose to say hes not pushing his own agenda? he's written a book, maybe VIT D pays a big part in "tracking your plaque" (the book he's written) Idont know i havent read it or researched it. Also i bet i could find a negative criticism about any kind of treatment on the net! The fact that DR.Marshall has lectured at Melbourne Uni (one of the most prestigious in Australia) and the fact that your OWN GP needs to be a part of the team administering the MP is a positive. I think i read somewhere that these trials are part of some process of getting it to be approved by the FDA. I'm not saying that i think the MP has all the answers (far from it in fact), Im just saying i'm glad that there are people looking into alternative theories (because lets face it the current theories about POTS are not really much HELP) I don't even know enough about the MP to endorse it or rebut it, all I'm doing it saying 'hey look heres a new way of looking at things, what do you think?'

I was googling on the net and saw something called the MArshall Protocol, a program that has helped ppl with Lyme, CFS, Fibro, etc. It lists POTS as one of the things it can help with. Ive kind of speed read through it and it looks interesting to say the least. I just wanted to know if anyone has tried it? heard of it? have any personal experience with it? http://www.marshallprotocol.com/ I dont think theres many costs involved apart from your meds and test and stuf done through your gp, so it doesn't sound like a scam thing. Im pretty sure your gp / pcp needs to read the manual and kind of manage you while youre on this program. This is the only review i could find so far with someone with pots: Jun 4th, 2006: I have been able to leave the home several times a day etc,etc. I had a birthday and can remember last year's very well [4mths on MP]. Girlfriends took me out to lunch. I was very ill and barely able to sit there, took days to recover. I keep thinking last year what I would be like this birthday!!!!. Well it went like this......Didn't do the kitchen before I DROVE myself to my friend's house, then she drove me and other into the country to an old pub/guest house, we had a great lunch, lots of laughing and talking. Come back to her house, DROVE myself home.. it was NO effort. Then I took daughter to have her blood tests. Husband was struggling , because of birthday he tried to do a bit of house work for me. I COOKED a simple dinner for everyone. Husband then practiced the art of breaking a lot of MP rules (he is on MP). He become quite ill into the evening. Thrill of all that I was able to do.....took only a half the next day to recover!!!!! I still have a way to gooooooo, but heading in the right direction Grace November 2006: My POTS was really bad with BP dropping when standing and then the heart and adrenalin pumping madly trying to bring BP up. I have no POTS now, only get a bit light headed if crouching down for a while and stand up too quickly. My CFS is becoming more like a bad memory as I just keep getting better!!!! January 2007: Things are just getting better all the time. The last few days I have been doing a big clean up around the place. The last 7 years I didn't have the mental, emotionally or physical ability to sort and get rid of stuff. Although I have had enough of it now. But it has been fun and productive. I have been able to cook the odd meal like the good old days {before cfs}. CFS headache comes and goes, I will be really glad when this finally leaves for good. I have been doing some heavy {for me} gardening with lots of breaks. Before MP I would have been flat out lifting the mallet or even going to get it. Slowly, slowly I am starting to be able to multitask again and able to think through more complex matters. I notice the car radio doesn't annoy me as much or as often when I am driving. The latest muscle improvement has been the top of my neck. At the worse of CFS I could have worn neck brace when been driven, as when my DH drove I couldn't support my head properly with his braking and accelerating. As he gets better I am sure his driving will too, as mine has. Member in Phase 3 More than two year now on MP, boy what a ride. I couldn't never have imagine ever being able to do what I am now doing . Although I still have a way to go, I just keep moving the goal posts. I still have to rest and sit more than I like I have had a small break out with 'shingles' for the third time, was on my left arm, all ok Pre MP- the muscles in my back had become so weak that I had rotated my pelvis and it had locked out of place when getting out of a swivel chair. An osteopath had to unlock it. With MP the muscles involved with this injury have been herx . Late last year I was doing a bit of light gardening and it did it again. Not near as bad. Again the osteopath fixed it. But this time what was really happening was that the herx was re aligning the spine and pelvis as the muscles healed. Pre MP-I could on a 'good' day sit up in a straight back chair with effort, dizziness. feeling faint. pots etc. On a bad I was unable to sit up all. Now - I never lay on the couch or recline. Pre MP-I had become so weak that I was looking at getting a wheel chair, but knew that I was too weak to be out at all. The few metres from the carpark to my doctors was getting harder, with even using the wall as support. At times I would lie down while waiting to see him. I could not walk against a bit of wind. I had no leg muscle strength or shape. I could only lift my feet just enough to clear the flat smooth ground and place my foot weakly and flatly on the ground. At the mall I moved from seat to seat. Going through the check out was a nightmare. I would be willing my self "Don't faint, don't faint, hang on to some thing". Now- I can walk swiftly,stop, turn around etc. Do it with out thinking. I go on short walks now and again when my BODY tells me that it wants to move more between herxing. Pre CFS -I would wear out 1 or 2 pairs of shoes each year. The last 7 years I have not bought any shoes, except for slippers and light canvas ones to block summer sun, and I threw out my heels. HEAR THIS everyone, I have just bought a pair of proper cross trainers . I needed the extra support because the AMOUNT OF TIME I am now spending on my feet. I know its long! opinions please!

Just thought I would share this info. Looks like the yellow wiggle has set up a research fund with the Baker institute. Good news!!! http://www.bakeridi.edu.au/support/greg_page_fund/ http://www.gregpage.com/ I only wish more research was being done! EDITED to add this: i just found a link to a recent interview he did! http://blogs.abc.net.au/grandstand/2008/01...rview-greg.html i just listened to the interview.... very interesting!!! Looks like he has made somewhat of a recovery, or is at least doing better. An interesting theory about the cause of OI for him and when the specialist thinks he will recover!

CONGRATS!!!! i'm so happy for you!

Since I have got POTS I havent really been able to leave the house much, apart from dr's appt. Mainly because if Im walking for too long (5 mins) i get light headed and dizzy and feel as if though im going to faint (although i never have) and ussually get tachy. Because of these bad experiences, i avoid going out. But sometimes i wonder whether i'm being to soft. Should i persist? should i go out even if its for a couple of minutes (ie. accompanying someone to the store) Just wondering why other people don't go out? thanks hope everyone is doing as well as they can

yes! sometimes when someone is talking very close to me, i feel almost on edge because their voice is hurting my ears!

thanks for your replies! i guess im just really worried because i have a dizziness that does not seem to be related to bp, that just wont go away. it is almost always there, its been 6 months. and ive read about other people on the forum that have had this and then go on to have a form of mito. most times my head just feels so heavy but light headed at the same time. i also havent had an appetite for 6 months and have had extreme nausea which has subsided a little in the last few months, but still there on some level most days. im wondering whether its worth mentioning to my dr and asking whether i can do the blood tests (lactic acid etc.) ?

thanks for your answers! well im still pooling alot, i mentioned it to my dr and the dr said well as long as they're not purple, and i said well actually they are turning purple! then the dr kind of laughed and made a joke about my legs falling off and disregarded the issue. which wasnt very helpful. i dont thing the dr understands the severity and im kinda getting really worried. what does everyone elses pooling look like? my legs go red about after a minute of standing or sitting in a chair and then after about 2-3 minutes they start going a deep purple, sometimes they are more mottled, sometimes there are purple like veiny shaped things, and sometimes there are little white dots in some areas. they only go back to white when i am lying down. they also pool less when i am walking around the house, but as soon as i stand still they pool again! can pooling be dangerous? thanks guys

my pressure is more like someone is squeezing my nose, would this be vasomotor rhinitis?? my nose is neither runny or blocked.

thanks you so much for your replies! is this the same for pooling caused by denervation in the legs....(or am i totally off track now!) im just trying to link my symptoms, drs havent really found a reason for my POTS, and it feels like nor are they interested (Im from australia so far there havent been many Drs that have seen this condition, nor are there mega specialist hospital like mayo or vanderbuilt!) my symptoms are intermittent nausea, alot of burping sometimes reflux, constant dizzyness/light head (that isnt bp or ear related) pooling, vision disturbances, heat sensitivity and of course tachy on standing!. so i thought maybe the nerves are damaged or something? what kind of tests would i need to investigate this? by the way Macks Mom, i too am following a special diet.....no dairy, the only flour i can have is rice flour and barley flour (would this constitute a no wheat?) i make a yummy bread out of boiled potatoes, rice flour and barely flour!!! im hoping this diet will help. how long did it take you to notice improvement? and what kind of symptoms did you have?

ok, so ive gathered that autonomic neuropathy is because nerves aren't working well. i think that i read on here that nerves can grow back but can take up to 3-5 years to do so. i cant find this info now.....can anyone clarify this? so basically if your not sweating in some areas, potentially if the nerves were to grow back you would sweat in these areas again? thanks!

hi everyone, ive been trying to figure out what is causing my pots (as most of you!) so ive been going down the list dinet provides and trying to rule things out. now with mito ive been researching it on the net and looking up past post on the forum. a few things have struck me, and i have a few questions that i hope you guys can help out with! when looking up mito most of the symptoms correlate with pots, fatigue, muscle weakness, GI stuff especially, losing ability to sweat or sweating too much, brain fog. so why dont drs suspect mito? i guess what my question is is why and when do they suspect it? are there any blood test results that may arouse their suspiscions? and if so what are the tests? (i know that muscle biopsy is the standard test) i guess im kinda freaking myself out abit. but as you all know you can help but freak out sometimes.....especially when all your dr does when you tell them your new and exsisting symptoms is write them down and try and normalise them. im sorry but blood pooling is not normal, neither is feeling like you cannot hold your head up, neither is not having an appetite or having nausea for months! its like ever since i got this pots diagnoses any symptom i have is ' yes that may be pots and it should subside' (this is from a dr who only thought pots caused tachycardia before she saw me) i guess thats a little off topic and should be left for another post!!!! thanks for your relpies guys!!!

hi, for the last 2 weeks i've been getting a pressure like in the middle of my nose.....it happens while im standing or sitting.....rarely does it happen when im laying down. blood pressure is normal while it happens. i mentioned it to my dr, she doesnt know what to attribute it to. just wondering does anyone else experience this? thanks for your replies!!!

hi Do you know what type of blood test this is? my neuro ran a whole lot of blood tests and i was just wondering whether this was covered. thanks