blueskies

Hi Chaos, I didn't hear him say that about MSA -- although the volume of his voice was so low on my computer I was straining to hear him anyway. However, I had read of the 10% statistic. Right back when I was diagnosed with POTS about 8 years ago, maybe. (I'm now sketchy on my diagnosis date -- brain fog or what! I could look it up but am staying lying down today). However I haven't read it since. Then again I haven't thought to do a search for it. blue

Thanks Tachy, A most thorough overview, for a presentation, on the treatment of symptoms of pots available. I have severe constipation issues and can't work out why I have not been offered a try of mestinon. Something to ask my pots or gi doc. Was interested to hear the doc's take on tilt table tests. Sometimes needed, but not always necessary -- if I got that part right. blue

Katybug, You've just confirmed something I always suspected. Only the other day I said to my daughter how much I hate tonic water and now I know the reason why. Thanks for that! blue

Water is supposed to be a great place to exercise because it has compression qualities. It helps keep the blood pumping around our bodies. Not sure that a bath would be deep enough to have the same but it's a possibility I guess. If you choose to swim for exercise, just remember that it's advised to have someone watching you when swimming in case you faint or feel weak. Years back there was a good article on this site about compression qualities of water written by a doctor but it seems to be gone now. Perhaps out of date. I'm still not swimming at the moment but I promise myself nearly every day that I'll try to go soon. However I have to have someone to take me at the moment and that's not possible. I feel at my best when I swim but it's been so long now I've grown unfit again. blue

Hi Chaos, Yep, to the first paragraph And my experience with a food elimination diet (a very well respected one) has been that my sensitivities are getting worse and worse and the groups of food I can eat has grown smaller and smaller. My skin is now as sensitive as it was just before I went on the diet although I did see initial improvement -- that was what kept me on it. I should have left the elimination diet alone. I had a normal healthy relationship to food just over 10 years ago. Now there's nothing normal about how I approach eating. In some ways the diet has messed with me physiologically and psychologically. (Of course I'm not counting those people who are, say, caeliac for example or those who have allergies, etc. Their need to not eat certain foods is unquestionable). blue

Every one has given great advice. Only thing I would offer is that semi-sparkling mineral water helps me quite a lot with nausea - it's something to try before you the day of flying. Try to stay hydrated as it's most important and if you throw up 1). you have something to throw up and aren't dry retching and 2). that's what the airsickness bags are for -- remember plenty of people throw up when flying. I actually have a fear of throwing up in public (almost a phobia) and carry a plastic bag with me for reassurance. I only needed it once in many years when I was on a car trip and had a migraine. The other thing that has helped me when flying in the past is to ask for a window seat -- being able to see out seems to help me with my balance quite a bit - in my case it helps take away the sensation of roller coaster quite a lot. But I realize some people don't like to see out. blue

I didn't sweat for nearly 6 years and then it swung the other way and now I sweat too much. I do believe menopausal transition had something to do with the ability to sweat kicking back in (athough I did experience the first year of hot flushes/flashes with no sweating which was very uncomfortable as I'd get hot but body could not cool itself). At any rate I still sweat profusely with the slightest exertion at times but also have periods of feeling overheated -- like my body is too hot inside but no sweating occurs. I use a fan and airconditioning. Both help a lot. It's summer here in Australia at the moment but we've had some milder days recently and only need to run the fan near me. I especially need to use it at night. It helps stop the sweating, the heat, and calms erythema (and rosacea that erythema has triggered, imo). I also use a fan in winter too -- whilst I'm under the bedcovers. Just having it blow gently on the back of my head helps keep me cool. Of course, Sydney Australia has some cold nights but nothing like parts of North America have and I have no idea what I'd do if our nights were freezing. blue

So much of your post reminded me of how I felt for years before being diagnosed with POTS. I'm glad to hear you have perservered and seen a pots specialist and will be tested. blue

You have my sympathies. I was a regular visitor to emergency for migraine pain for years. Now I take opiate medication and this has been helpful. Not always (had a killer last week for 3 days and must admit was very distressed and depressed) but the opiate regime (low dose, now, for 7 years) helps and keeps me out of emergency (as we call it in Australia). I've tried everything else. The one thing that helped me with dehydration when I used to visit emergency was a iv saline solution. I feel for you, blue

Wonderful to hear. Blue

They just took brand name Xanax off the market in Australia so I had to switch to a generic band. I reacted badly -- red, burning skin, weird medicinal taste in my mouth. When I looked up the in excipient ingredients (the extras) Xanax had 7 and the generic brand I tried had 9. Neither my psychiatrist or my allergist thought this was weird nor 'all in my head.' Thank God. blue

Hi all, I'm getting smashed trying to stand in line or when I'm walking -- again. My vision whites out, I feel nauseous, I get extremely dizzy and feel like I'm losing my balance and then I start to feel panicky (although I've been like this before -- many times and can't think why it's causing me to panic unless the panic is just another symptom that I get when I force myself to stay standing. I also will often get migraine, start sweating profusely OR have dry hot skin etc I'm back to using a walking stick but can't help wondering if I'm not at a place where I need a walker I can sit on or more securely, I wheel chair. This would be giving in for me. I think I need to change that attitude. Perhaps I'll be forced to give in. It's so hard to know if I'm making things worse by forcing my body to stand when it's doing everything short of syncope to tell me to sit/lie down. I'm having a bit of a crisis of 'finding/knowing' what my limits are. blue

I'm going through an extreme period of this at the moment, Aimes. I stand in cool breezes (hard to find at the moment in summery Australia), have lots of cool showers (but not cold ones as they will decrease my core body temp and then it will ricochet back and overwharm me. ie my core temp will go high). I spend a lot of time in airconditioned rooms and in front of fans too. Night is worse. I get into bed and warm up and it gets really hot unless I've got the airconditione up high or a strong fan on. Swimming in the ocean will stop the heat for at least 2-3 hours but going out in the sun to go swimming is a trial. I often just feel too hot in the sun. I must try lying down on the cool tiles. I don't always go red uniformly with this but will get pressure urticarial blobs of red on my skin. blue

At the moment i'm using a carefully constructed mound of pillows to keep my head elevated. Most nights I manage to stay there but it's far from a perfect solution. I've tried elevating the head of my bed some years ago but found I would slip down the bed (and this when the bedhead was only elevated by about 4 inches) a bit and it would wake me and I'd have to 'climb' up to my pillows again. I have a new bed and mattress (the other one was so old and lumpy) so perhaps it's time to give elevating head of bed another go. blue

hi, no, I've never been offered ketamine by any of my docs. And yes, I've tried acupuncture and although great for dealing with a stiff neck I had no good result with it for migraine -- in fact one time it caused a migraine to come on. I'm in Australia and medical marijuana is not available here yet (although maybe it is available in one of our states, not sure. Am sure however it is not available in the state I live in. But good to know for future reference I want to add that my migraine are often made worse by lying down too. Plus I can go to bed without a migraine and wake a couple of hours later with a very painful one, too. Too much loss of sleep causes me to get that slightly manic feeling -- more of a feeling of being overstimulated in my case and then I find I can't go to sleep if I want to. My pain specialist has emphasised the importance of regular sleep and regular meals. At times I've been able to accomplish the regular sleep but for some time now strong prickling of my skin that makes the bedsheets feel a bit like sandpaper and muscle twitching has caused me to sleep very badly. Thank you for the exchange of info. blue

When sitting up for anything longer for a few minutes I have to put my feet up or I will feel very potsy: dizzy, sick, can't concentrate, migrainous. I was like this for decades -- long before I was diagnosed with pots. I can't stay on the computer for long no matter how I'm sitting, lying. Looking at the screen makes me feel potsy as well. blue

Hi Naomi, I have chronic daily migraine. I've tried ALL the preventative meds with no positive response. About 6 years ago I was hospitalized for my migraines and after a week of observation was put on opiates. I've since tried a number of them (having become allergic to one -- norspan it's called in Australia -- and finding another caused me more problems than I could cope with (morphine sulphate). Now I take Targin (oxycodone 5mgs and naloxone 2.5mgs) in divided doses each day with endone for breakthrough pain. My dosage has increased by 5mgs over the six years and I'm still on a low dose. Up until a year and half ago I was getting great relief from my migraine pain but since then I've experienced more and more pain and it's changed in how I would describe it. Not sure what I'm going to do . The opiates still help. They just don't seem to do as much to help this new type of migraine pain that has evolved. Apparently I'm experiencing allodynia, now. blue

migraine is one of my symptoms. My migraines have gotten worse (more painful, last longer) in line with my pots getting more debilitating. Lately I have a new sign that lets me know I'm in for a bad migraine -- I get very dizzy and lightheaded and my blood pressure reads high. blue

Thanks everyone, Your imput has been helpful blue

Mostly my feet are way too hot, like the rest of me. But then suddenly they can become painful cold. It doesn't happen often but it's disconcerting when it does. blue

Just speaking for myself, acgraham, I think anything that wreaks havoc with the enteric system could affect serotonin levels. That's my completely medically uneducated opinion.

I got a urinary tract infection after I was catherter-ized in hospital post a back operation. I know it's not a bladder infection. But I too have a real problem with taking anti-biotics. I haven't taken one that agreed with me in 12 years. But just wanted to say that my allergist worked out that if I take sodium bicarb (in small amounts she worked out for me) it might clear the infection. So if you're having a problem with anti-bs perhaps there is another way to approach it. My allergist is extremely smart and although sometimes she can't help me, other times she's a mine of information. blue

I don't think it's really that strange. People with POTS are unlikely to be majorly active outdoors and are often on restricted diets. Therefore the main sources of vitamin D (sunshine, food) maybe out of whack. Dave, I think your are right in a way. I think low vitamin d (due to lack of exposure to sunshine) and weird diet due to food intolerances could be a factor in why I'm not getting better from pots. (But I don't think it's why I got pots in the first place). Those with problems tolerating vitamin d: For those that have adverse reactions to vitamins it could be because of something else that is in the multi-vitamin pill. It would seem it could be the same with vitamin d. I can tolerate multi-vitamins but only a few different brands. Luckily most of the food intolerance studies have been done in Australia so in this instance I am able to buy the ones without things in them to which I'll react because they've already been 'passed' by Royal Prince Alfred (RPA) Allergies and food intolerances Clinic. For those of you who are struggling with food intolerances and problems with vitamins the fedup.com.au site with Sue Dengate is a good place to start. Just keep in mind that it's really unwise to put yourself on the strict elimination diet without guidance from a dietician and also going so strict can cause one to become even more sensitive to many foods -- as happened to me. Grr. RPA Allergies and Food intolerance Clinic is supposed to be a world leader in this allergy/intolerance field. But not sure if that's their opinion or the opinion of docs in other countries. LOL

Hi ShinerKitty, I'm so sorry to hear about your oldersister. And with your youger sister also having a melanoma I understand why you would not be tanning. Hi Jon, I think medicine has such a long way to go, too. I was at my allergist's on Monday trying to work out how to have some teeth removed by the dentist as I've become allergic to the local anaesthetic and twilight reaction (we've decided on general anaesthesia which seems like overkill but with my allergies I don't have a choice). We were talking about an anaphylactoid reaction I had about 4 years ago and I mentioned how my body had broken out in itchy urticarial redness that covered half my body but not straight down the middle of my body. It was on a smaller part of my back for example, and a larger part of my front. How they gave me meds for it and it disappeared but not long after, and before I was discharged it from hospital, it came back, only it was all over the other parts of my body that had not been covered the first time. I asked her how the body knows to do this, why the body does this, and she just shrugged. It seems it's a mystery. It happens but they don't know why. Since my pots journey started some 11 or 12 years ago that's pretty much the standard opinion of most docs. Things happen, they aren't sure why, they may or may not be able to treat different symptoms. Just not enough is known about pots and so many other illnesses. It's a pain in the butt that's for sure. blue

Hi, I'm in Australia and often our blood tests are measured in different ways -- often making it hard to work out what is 'normal' on a mostly American site -- Thanks Beforethemorning for making that clear -- now I know the difference, at least in regard to vit. d My gp ordered a full blood workup. Thanks everyone for your imput. I'm not surprised that vit d. (which is really a hormone, not a vitamin -- something l learned yesterday) levels are low for a number of us. There's a couple of a youtube videos I found interesting. I don't know how to link to them but the first is called: Dr Stasha Gominak Discusses Sleep and Vitamin D (you can watch it in 5 parts or all at once. The second one is: Vitamin D: The Original Source - How to use it Sorry I couldn't put up the links but you will get to them if you search you-tube. I learned a lot. Missed more than I learned due to brain fog. But it was very interesting. I take all this info with a grain of salt blue