blueskies

Hi Puppylove, In my experience with physical therapists they are very careful and go slow. (Nothing like a personal trainer). It's all about building up strength slowly. Tell them if anything starts to feel uncomfortable and they should back off, is my experience. All my pt was done on the floor. They can give you exercises for in bed, too. Must get back to see mine and practice what I preach. blue

Thanks Issie, I have to stay away from glutamates (as well as salicylates -- I can only eat low level -- and amines). According to Royal Prince Alfred hospital (Sydney, Australia) allergies and food intolerances diet 'failsafe diet.' citric acid should be fine, along with dextrose and rice syrup. I can eat dairy and do and strangely have been eating mostly non fatmilk for the past couple of years (weight issues) and my skin reactions ('sunburned' when I've not been in the sun) have been getting worse. I'll start by switching back to full cream milk and see if this makes a difference. I had suspected citric acid was a problem and mosty avoided it. blue

Thanks rama, I'm in Sydney Aus and I'd like to know too. blue

no connection between vaccinations and pots, for me. I had a whooping cough vaccine a couple of months before my granddaughter was born but I checked with my allergist first. She said that it should be okay as it was not a 'live' vaccine. And I was okay, just felt a little off for a couple of days afterwards. However, I have not had a flu vaccine since I was diagnosed with pots 7 or so years ago. I believe they are 'live' vaccines and have just had a gut feeling that I should avoid them. However, I'm in Australia and apparently we are in for a huge flu season and I'm going to see my allergist to see if she thinks it's a good or bad idea to have one and and if indeed they are 'live' vaccines. It's a toss up, possibly get sicker from vaccine or sicker IF I catch the flu. Essentially, up until now, I have been gambling that I don't get the flu each winter season and so far I've been right. Perhaps that's in line with the theory that our immune systems don't recognize viruses etc until they start to get better -- or so I've read. blue

Hi, I'm extremely sensitive to light. I also have chronic daily migraine (treated but body is adjusting to meds and I'm getting more breakthrough pain. I've found it best to stay away from the computer as much as possible (it's a new one and has a less hard to look at screen) and when I do ignore the fact that spending hours on the comp. makes my migraine problem worse I pay for it. I wear sunglasses most of the time. Always when outside, in stores etc. When migrainous I often wear them inside as well if I can stand the pressure of the arms of the glasses on my head. Just recently I read that polaroid sunglasses are the best for migraineurs. Not sure if this is just someone's experience or been scientifically tested but it does make sense because polarised sunglasses really cut out a lot more glare -- eg. when at the beach you might see an expanse of water but with the polarised sunglasses on you can see through the water to the rocks underneath. I know this because I did have a pair once and was amazed by how much I could see that was hidden by glare when wearing very good but also nonpolarised glasses. I'm foggy today and keep thinking that 'polaroid' is the wrong word. But I'm pretty sure it is. blue

Thanks for that Bella Mia -- much appreciated Issie, the link Bella Mia provided powdered sodium cromoglycate but also mentions it's available OUTSIDE U.S. -- I'm in Australia, so that explains it. Smiles to all today (it's one of those cry or smile days for me today so I'm gonna try to smile)_Red rash reaction came back as the day wore on yesterday and I woke this morning flushed with itchy rash on face and facial edema. I've had about 3 days free of this since I can't remember how far back so I know it can be controlled but can find no difference sometimes between days when skin is good and when it's bad ? Maybe stress caused by adrenalin surges. But that answer is attributable to just about anything and not much I can do about it. blue

Hi Bella, Can I ask what your skin symptoms are? And how do you go about putting the gastrocrom in cream and do you do it daily, a few times a day, or just when you have skin symptoms? any input is appreciate Blue

Thanks Christy, And I hope like crazy this med helps your son. blue

Thanks Issie, I'm in Australia and oral sodium cromolglycate is no longer available at just any pharmacy. My allergist wrote a prescription for it and I had to send it off to a particular pharmacy who make it up, in powder form in a capsule, and before they made it up for me they rang me to question me about my allergies and sensitives so they could decide what type of capsule to put it in and what fillers they could use. I've worked out (think it was you who originally told me about the different forms of this med -- nasacrom, gastrocrom etc, and so I just used the word Gastrocrom in the title because it is the oral form. We have a number of meds that are only available like that. I used to go through the same procedure for a migraine med. I think sometimes it's when a drug is pulled from the market by it's producer as it's be superseded by another one or something and these special pharmacies order it in from overseas. Thanks, I'll do some research on ketotifen. There are so many medications that do by different names here in Australia. I just can't understand why names can't be 'global' at least in English speaking countries. blue

Hi Weatherman, I have had many years of panic attacks and anxiety. After I was diagnosed with POTS the panic attacks mostly went away. The anxiety however did not. I think the panic attacks were caused by not knowing what was happening to me. I can still have a panic attack but not nearly so often. I'm on Xanax and yes it's a highly addictive drug of which people usually need more and more to get the same effect as time goes on. I'm 57 so I don't worry so much about taking Xanax -- I figure at this age what's the difference. But if I was young like you I'd have avoided taking it if I could. I only agreed to take it, pre-POTS diagnosis, because I was so over 20 years of panic attacks. I've also dealt with OCD in my life but it's never been to a crippling degree. Really for myself, I have found that the only answer to fear of leaving the house and being around other people etc is to keep telling myself that it doesn't matter what other people think of me (and that they aren't giving me much thought anyway). When I was falling down from POTS and was finally diagnosed with it some years back I went through a stage where I could not leave the house. Then I thought, stuff it I'll do what I need to do to get out. So I learned to sit down in the street (on the footpath/sidewalk of course) when I felt those pots falling feelings coming on and I learned to sit on the floor in supermarket lines and bank lines etc. Whenever I found myself having to stand in line I'd sit on the ground if I have to. It became amusing to watch other people's reactions. Some would edge away from me like I had the plague (their problem) and others would ask me if I could help and I'd tell them I had a balance disorder and needed to sit but otherwise I was fine. And it really made such a difference to me, I was able to get out and about a bit more because I gave myself the permission to react rationally to my symptoms rather than try to grit my teeth and try to fight them. Unfortunatey 2 years ago I had to have spinal surgery and age and damage to the spine makes it hard for me to get off the floor once I get down so I'm finding I'm having trouble with standing - I've been going through the sweating, feeling sick while standing and waiting, but more often just staying home. Which is not helping my dysthymia (ongoing long lasting low level depression occasionally punctuated by severe levels of depressioh -- that's the diagnosis and I'd agree). But Only last night I remembered some exercises that someone told me about on another pots forum a few years back. She told me when I find I have to stand, to cross my legs and tighten my leg muscles and sort of push one leg against the other. The idea is to keep the blood from pooling and make it pump upwards avoiding the lightheaded "I'm gonna fall' feeling. Maybe this will help me. Just thought I'd mention it to you to. I'll be trying it next time I'm out. I think it was jet pilots that she said use techniques like these to stop from passing out at high speeds. Not sure but worth googling, probably. Summer is hellish for many pots people. I wonder if the word hellish will get through the censor. LOL. blue

The only exercise that is comfortable for me is swimming and it has to be in the sea. I'm allergic to chlorine. The water has compression qualities that help the muscles pump blood around the body. When I'm swimming in my comfort zone I am fit and feel good for up to a few hours after I get out of the water. Unfortunately these past two summers in Australia POTS has made it hard for me to get to the beach so haven't done much swimming. My walk 4 times a week is not much more than a stroll but if the weather is cool, break the walk up with a rest half-way I am certainly not getting superfit and it's not doing anything for my overweightness but it does make me stronger physically. I'm looking forward to the winter in Australia so I can do more walking in comfort. Since my early 20s I could never keep up with gym classes or other people's pace. It always had to be at my own pace. In gym classes when we had to stop and take our pulses mine was always so high they'd make me stop the class. Now, with my POTS diagnosis I can look back to then and know that although I was extremely fit (and I was -- doctors used to say how strong I was) I could only exercise, even way back then, by pacing myself. Kenneth Cooper, who I believed invented the word aerobics said in his first book nearly 40 years ago that you needed to reach the equation of pulse rate mentioned above. But he also said that if you can exercise for more than an hour any exercise then becomes aerobic. Not sure if this 'science' still holds true but maybe.worth looking into. blue

Hi I tried a capsule of gastrocrom at 10am yesterday. I was itchy by evening but put that down to anxiety because could not see any redness or rash. I did have a lot of lower gut pain at that time too. I woke during the night a number of times with hot sore skin (that's what happens to me with sensitivities etc.) and this morning I was very red in the face and neck and had some slight odema of the face -- odema also common when I've ingested something of the many things I'm intolerant to. It's 26 hours since I took the capsule and my skin is losing the redness although the odema is still present. So, I'm thinking that the gastrocrom is not going to work for me. Although I probably will try it again further down the track just to be doubly sure it was the gastrocrom I reacted to. I've tried singulair in the past -- but it made my migraines as bad as they ever get. I've tried zyrtec and zantac, The zyrtec does make me feel a bit more comfortable and helps keep most of the hives away but the zantac, which does help too, both of them together are more effective - makes my constipation much worse and is not an option. Has anyone any imput into this for me? Also I've read about a drug here called keti-something. Wondering what it is and if it helps people with allergies and intolerances. I'm seriously thinking of going onto cortisone full time as it does stop most of the worst reactions. But it does have a lot of very bad side effects for me -- mood swings, (lots of anxiety), weight gain -- already a problem for me, and sleeplessness etc.. Any imput would be appreciated. blue

Hi Shelley, I have allergies to quite a few medications as well as intolerances/adverse reactions to many of them as well. I also agree with Lyn that you might want to talk to your anesthesiologist about your issues. I would, and have done a number of times. It's nice to meet you. I hope the surgery is as easy as possible and your recovery quick and easy as possible. blue

I'm 57. At 47 pots symptoms got worse. Although no official diagnosis of peri-menopause my age at the time certainly supports it.(Actually, it just came back to me that a few years before I was showing elevated FSH levels and told I was menopausal but I was in my early 40s then and turns out those tests were either wrong or my body was just weird. (I think my body is weird because I've also been blood tested for anaemia one month and iron levels were so low I qualified to have the pill camera test for gastro system for free (It cost about 2,000 dollars a test in Australia then unless patient was very anaemic -- if very anemic the test was paid for by govt.)But suspicious that my body was not always telling the truth when it comes to blood tests I asked for another blood test just before I was scheduled for the test and I was no longer anaemic. (Weird I know, but gut instinct is pretty dependable, at least for me). Anyway, I believe that the menopausal transition was a big factor in symptoms getting so much worse that at age nearly 50 I was diagnosed with POTS. At 51 it was official, I was post-menopausal. Very elevated FSH levels (although I'd had a light period a few weeks before??). At first I was dealing with hot flushes without the sweating. I had lost ability to sweat, although 4 years ago ability to sweat came back and now I can sweat a river and do so many times a day.. All symptoms got worse with menopause. Some have now eased off a bit, some have got worse but my hope that I'd get better once the menopause transition was finished for me is pretty much dashed. I once had a conversation with a pots person on the old pots site that shut down virtually overnight -- can't remember it's name but it was very popular. Anyway, this patient was in her 40s and had Dr Grubb as her pots doc. She was doing really well then but he did warn her that she could see an increase in symptoms once again when her menopause transition started. I fully believed my symptom increase was menopause related but my hopes that when I was finally menopausal that my symptoms would go away did not eventuate. At one point I went to a public hospital menopause clinic and saw a very good specialist there. She prescribed livial for menopausal symptoms (synthetic form of hormone replacement that is different from traditional ones) that was only available in Europe and Australia that I knew of. I did so well on it for 2 months. Full of life and a lot of my symptoms seemed to go into remission. However I put on about 30 pounds on it in just the two months I was on it so I had to be taken off it as it's not good to go through menopause too overweight. Unfortunately I never did lose those 30 pounds. I tried but it's like the livial stuffed with my weight for good (as have a few other meds). Symptom wise it was good for me for pots but weight wise I just could not continue on it as I kept on gaining weight. Then I tried the traditional hrt / hr medication and found that although hot sweats/flashes improved nothing else did and I believed they made migraine worse and I felt kind of nauseous on them. So, no more hormone treatment for me. Although if my sweating problem does not calm down this coming winter (been a hot hot summer in Aus) I'm definitely off to see an endrocronologist. I just can't stand this excessive sweating. When I go out for more than a walk to the shops I often take a change of clothes because I'll end up looking like I've been rained on. blue

Thanks rmamkentesh.

I did have an MRI done on my neck and there was nothing they could see but as they said, that doesn't mean there isn't something wrong there.

Pink, my husband is much like yours.<br /><br />Spinner -- I'm going to remember that. If anyone ever asks me what it's like to have POTS I'm going to say, 'it's about as much fun as dodging sharks.' It cracked me up. Or the next person that asks me what I do all day, I'm going to say, "I've been dodging sharks. You?"<br /><br />I'm so over trying to explain this illness to people who really don't believe in it.<br /><br /><br />I have one sister who is very kind to me and has made an effort to understand this stuff. She has a gastric band surgery about 5years ago to lose weight but things went wrong and she's developed digestive problems much like my pots ones. So she sort of gets that part of my illness and tries to understand the rest. In turn I give her support for her digestive systems problems and try to listen hard when she expresses her fears of maybe needing to have her ankle fused. (She was an athlete and did her ankle in and one operation just made the problem worse). Essentially if they fuse her ankle it means she'll have one leg shorter than the other which will probably lead to all sorts of problems, not the least her gait. Anyway, that sister and my psychiatrist are the only ones who 'get' it.<br /><br />I've been very unhappy over the years, and also bitter as well, that so many of my loved ones choose to believe I'm just not 'really' sick. Now I'm starting to feel like I couldn't care less. I guess at age 57 I am finally learning that I don't give a **** about what other people think of me. I do give a **** about how they treat me and speak to me though. I'm getting pretty bolshie when I answer them now -- although the habit of apologetically explaining the virtually unexplainable to people that aren't really listening anyway is a hard habit to break but I'm finally changing the habit step by step. I no longer beg for their understanding. Which is what I was essentially doing before and getting no real lasting response.<br /><br /><br />blue<br /><br />

Hi Joann, Yes to the neck problems. When I was in my late teens I had an accident that hurt my neck. Although I had migraines when I was younger, about half an hour after hurting my neck I got my first classic migraine. Now that you mentioned it perhaps the need to sit up when I have a migraine (in a high back chair with something behind my neck)comes from neck problems. I had not thought about that. Thankyou. I used to be like most people and lie down when I had a migraine but in the past decade or so this has changed. Perhaps my neck problems have been made worse by age. I've already got disc problems in my spine.(I'm 57) My migraines are the worst of my symptoms. Migraine can get so bad that even when in hospital nearly 2 years ago after a back operation the second day I got a migraine (not unusual for me to get migraine post anaesthesia) and I could no longer feel my back hurting my head was hurting so bad. When the migraine finally backed off I could feel the post surgical back pain again. Plus, they had me lying flat after the surgery and that was probably what contributed to the severity of the migraine. blue .

Hi, 7 months ago we moved to a new house where I have to use a flight of 19 stairs many times a day. I started off slow and don't exactly run up them now but I don't get any tachy from climbing them now. I feel quite strong when climbing those stairs -- so improvement there. When we moved in here I was not daunted by the stairs (which have been a problem for me) because my walking and standing had improved so much. However, I'm almost back to square one when it comes to walking. Mostly I need my cane now and a walk to the shops which takes most people about 5 -10 minutes takes double that for me. And I get very tachy and can feel pulse points in different parts of my body throbbing wildly. I hate the sensatation. It's a slight walk uphill and downhill coming home but both make me feel bad. Stopping to pick up a few things from the shopand standing in line is ****, again. I feel like I'm going to fall over very quickly now. And have now started using my cane agaIN which helps a bit but not much. I arrive home in sweat soaked clothes with a pretty elevated heart beat. Just having to stand to open my front door with a key is the last bit of torture before I get inside to the lounge and collapse on it. I'm not back to actualyl falling down but I sure feel like I'm close. I'm hoping that the intense summer heat we've had in Australia this year has been the trigger for my backslide in this area. It's cooler today but I know it's going to take a few cooler days and nights to feel better. I'm worried that I'm not going to feel better. When I was first diagnosed with pots about 7 years ago I experienced an improvement in some symptoms -- the walking and the standing -- although the migraines, the allergies/food chemical intolerances, bowel problems (constipation -- severe), flushing etc, brain fog, etc have mostly gotten worse. But With some on-off improvement with bowel problems. I'm so **** tired of the fear that my walking problems getting worse again And Im back to not being able to stand for long in one place. eg. the day before Christmas eve I started cookiung desserts for Christmas day, Standing bought on a migraine. Christmas eve I cooked more with a killer migraine. So Christmas day was spent trying to smile through migraine and intermittently excusing myself so I could go upstairs and rest (sitting up -- I can't' work out why sitting up with a migraine is better than lying down -- it used to be the other way round and is strange given that I have to recline to eat or I get terrible gut pain and that sitting, normaly, for an extended period of time can bring on a migraime?????) All so weird - especially that sitting upright for extended period of time can bring on breakthough migraine pain but when I get a migraine I have to do just that????? blue

cool -- not cold -- showers help me enormously in the morning. I realized about 10 years ago that suddenly a warm shower made me feel awful. This is the 10 yeas time line when pots symptoms suddenly escalated (I was not diagnosed then). I used to be have to shower sitting on the floor of our tub (shower is over tub) but now can shower standing up. I only take short showers, though. I also can now wash my hair in the shower, lifting my hands and arms long enough to get it done. A year ago I was having to get hubby to wash my hair sometimes because I just couldn't manage to lift my arms to do so. When it's warm weather (as it has been in Australia -- way too hot, actually) I let the water run over my hair too. Something about the water washing through my hair helps with the allergic rhinitis and general itchiness. My sister who does not have pots, but does have allergies wets her hair too whenever in the shower as she gets a similar relief from her allergies -- that and zyrtec when needed. BTW, when drying myself after a shower I pat dry as rubbing will often bring up hives -- although they don't last long they are unpleasant and I get enough unexplained hive outbreaks that I am careful how I dry myself to avoid bringing on a bout of hives.

Hi Godsgal, Thaks, very interesting about the numbness. I get daily migraine -- somewhat controlled by medication -- but I do get breakthrough pain. Very often one of my pre-migraine signs is numbness, on the face, usually around the nose. And as crazy at this sounds one of my fingers will sometimes go almost completely numb. These sorts of aura -- as well as visual, sometimes, or phantom smell etc is, I feel, more evidence of pots, mast cell activation problems and migraine all being connected for me. blue

Thanks people, for all the info. I'm finally about to start on oral sodium cromolgylcate (I'm in Australia but I think it's known as GAstrocom in the u.s.) My allergist has prescribed it and after nearly7 months I've finally got around to getting the script filled by a compound chemist. I've got a phobia about new meds. I've experienced anaphylaxis to aspirin (docs and I think aspirin was the culprit), anaphylactiod reactions to various things, "adverse reactions" where I thought I was dying for sure but was not, and the usual rashes, urticaria of all types including dermographism, flushing, hyper sweating, and skin that feels like it's sunburned at time and can feel like this for many days at a time. Weirdly I don't get diarrhea, but rather have a constant and sometimes servere constipation problem????. I have allergies and food intolerances as well as intolerance to many chemical smells -- daughter bought a new car recently and the smell was horrendous and I felt very potsy for days after riding in it All of it's got so bad over the past decade that I'm absolutely phobic about to trying a new med. Last single tablet of an antibiotic led to a feeling of dread, a hour and half of vomiting (finally stopped with a Zofran Zydis wafer) only to be followed by a couple of hours of ice cold feelings and body jerking (shivering so hard I was jerking). So, each new med I try takes me a long time to finally get up the nerve to take it. But after the reading I've done here and similar topics I realize how very unalone I am with these problems. I've been slowly making my way through all the MCAD MCAS etc., topics and have found a lot of info that I can relate to. So once again thanks. There was some mention of epi-pens on this topic. I just wanted to mention that I have an epi-pen too and although I've never had to use it (I feel like I'm tempting the gods even writing that) I have carried an epi-pen for quite a few years now.I discovered some time ago that epi-pens have a used by date so I make sure that mine is not out of date. They don't last as long as I would have thought they would. I was surprised by my first one that it was past its use-by date when I read the side of the container one day. Don't know why I had assumed that the thing would be always good till needed. It's a medication and reaches use-by dates like any other. Also I've been instructed that if I need to use the epi-pen I should call an ambulance after injecting myself because one might need more and any reaction that needs treatment with an epi-pen means that one needs to go to hospital afterwards. That one is not necessarily out of the woods entirely for some hours afterwards. Can't give definite times as I've forgotten. I'm sure it's worth checking this all out of the net. Sometimes I get a bit muddled about things. I now tend to forget a lot of what I once knew clearly. Exhausted brain as well as body. I know you all would 'get' this. blue.

loved this. I find myself smiling broadly. can this pots town be on the coast? I want a house right on the beach so I can roll out of bed into the sea. water has fabulous compression qualities. sometimes after a swim in the sea I don't feel like I have pots all for a little while. blue

if ive had a bad physical reaction to a smell I only need to think of the smell to feel the reaction. (this only happens with 2 odours that I can think of) but its nowhere near as bad as the original reaction. I get phantom odours too which is quite weird because I can rarely smell anything.my strongest phantom smell is fire,too, often,but not always. sometimes the smell of fire heralds a migraine. sometimes not. I can go weeks unable to smell anything and then I might have a day or a few hours when my sense of smell returns. at those times you'll find me sniffing things like fresh oranges etc. usually I don't want to hear about dr oz - not a fan - but this stuff is interesting. blue

I employ a cleaner fortnightly. I am no longer capable of physical effort to clean. house is not spotless. the day to day stuff like making beds is tough but I manage. cooking is the thing that does a real number on me. standing too long brings on brain fog (and often trigger migraines) and makes me dangerous to myself. burn myself with hot water or on hot dish from oven or, my favourite - walking into the open cupboard doors ive forgotten to close after getting something out of them. blue