blueskies

Hi a eris, interesting that you did an aspirin challenge test and was found to not be the cause of your anaphylactoid response. Did u have it done in hospital? I did a test some years ago to see if I was fine with celebrex -- a nsaidl, albeit one that is least likely to cause problems, and found i was okay with that, only problem is it doesn't seem to be much use to me for pain. I am thinking asking my allergist for a challenge test for aspirin, although it is salicylic acid and I am intolerant (although not allergic) to foods with more than a low level of salicylates in them. I have erthythromelalgia and aspirin can be helpful for some people with this skin/nerve problem (a substantial amount get the result of resolving flares of EM with aspirin and I would so like the chance to be one of them. My erythromelalgia (EM) did not show up until I had an anaphlactoid response to aspirin (it was an educated guess by doctors that aspirin was the cause). I often wonder if, because I was taking aspirin quite regularly for migraine, (and combined with codeine it was just as effective as the opiates I now have to take) I may have been treating the Erythromelalgia that I had not yet realized I had. was your aspirin challenge test done in hopspital with a cannula inserted waiting to be hooked up to rescue medication should allergic response recurring? Blue

Hi tammy Kay I am really sorry to hear of your loss of your dog, Max. When our dog had to be put down years ago I experienced grief that overwhelmed me at times. Our pets are so dear to us, such grateful comforts who never criticize us in any way. True unconditional love. My thoughts are with you. blue

Hey Sarah, I hope your appointment goes well. blue

Hi future hope, I hope this is your answer. Thanks for passing on this info. Blue

I get the tight diagram feeling but feel it is to do with gi symptoms in my case. Sometimes I get so out of breath it was an effort to talk. It used to happen quite a bit and I got used to it. I never even mentioned it to a doctor and I should have. But I have seen this problem/symptom addressed a number of times on the forum. It doesn't happen to me that often anymore, knock on wood. blue

Hi bell girl, thank you again for your response. I have written and lost two posts to you this morning. It's a pots fog day. I'll try again later. Basically just wanted to say that you always have meaningful experiences and information to share. And that I appreciate it. blue...... now to post without losing it......

Hi gjensen, and I agree, you do have bragging rights. Distance is great but I think you are right to back off a little, especially in the heat. And walking where you have good cell reception is also a good idea. I would take my mobile phone in the water with me if I could, lol. I sometimes feel like ET in my determination to be able to 'Phone home' should I need it. blue

A eris, Was it the aspirin? Blue

Bumping this as I should have put POTS in the heading. Maybe more people would be interested. The young woman with pots explains the difficulty and fear in regards to trying to be employed. Blue

Thanks Imapumpkin, Your explanation of MVP and murmurs, (sorry couldn't spell murmurs yesterday to save my life and auto correct ain't helping,) makes sense to me. I have an aunt with MVP ( just found out) but I have long thought she has a form of dysautonomia. I mentioned that to my mother only recently and her response was quite distasteful. Told me that her sister was always sick and rolled her eyes. I guess that's what my mother thinks of my illness too. It was an uncomfortable moment. Blue

Hi Kim, Thank you again for your input. Nine years (prior to my diagnosis) a cardiologist did not pick up either POTS or MVP although my POTS symptoms were very evident. A neurologist did not pick POTS up around that the same time (I was seeking treatment from him 4 migraine) and when I told him I had been diagnosed with POTS HE immediately said I could have PAN and questioned who diagnosed POTS but backed right off when I told him the doctor's name.. I wish I could ask for my money back from both the cardiologist and that neurologist. lol. I can see now that MVP or not have been present. Just 2 months ago my POTS doc heard it through a stethoscope and ECG Confirmed it . Thank you for the detai you put into your posts. Blue

Hi Lisa, A lot of my POTS symptoms ramped up in intensity with the menopausal transition, everything you mentioned sounds familiar to me. In my experience,Menopause can see an increase in POTS SYMPTOMS and you are that age. I trust that you are under medical care. I find reading and posting to the forum helps a lot. A ton of info to be found here, and people are kind. Blue

Hi lfreem, i sometimes get that rocking vision too. You described that well. I don't get that symptom much anymore. I used to experience it a lot. Hopefully the neurologist can explain it. I never thought to mention it to anyone -there were always other symptoms to address first. Blue

There is a young woman with POTS, ME, and a connective tissue disorder on the program. The program is a panel and discussion program. I can't directly link the show as I'm using my tablet and have no idea how to do it, but try searching: Insight SBS Disability and Jobs. Add in Australia, maybe. If you are interested. I just think the more we 'see' discussion of POTS, the better. And I think the woman with POTS did very well, especially given that she had to sit upright with feet down for an hour or so. If someone else searches for the program and can put up a link, that would be good. I was glad I watched the entire program. Blue

Hi bellgirl, early on in the article it mentions that POTS used to be known as Mitral Valve Prolapse Syndrome (I think it said 'syndrome'). I now have mitral valve prolapse . Something that was not detected until very recently. I was diagnosed with pots about 8 years ago and was astonished that I would develop MVP after pots symptoms but not before. I'm confused. But have to wait until October to talk it through with my pots specialist. I see you were diagnosed with POTS and MVP in the same year. I'm wondering if my pots specialist missed my MVP. I'm no medical giant, that's for sure. But a very well regarded migraine neurologist hear a 'murmer' in my heart about 14 years ago. But nothing was made of it and I just accepted I had one. Then when I first saw my POTS specialist before he diagnosed me (it took a month of tests after first seeing him until he gave me my diagnosis), after he listened to my heart I mentioned I had a murmer apparently and he said I didn't. One specialist disagreeing with another. Okay.... But now, 8 years later he finds I have MVP? This has been playing on my mind, -- I did have a mummer, I don't have a murmer, but now I have MVP? But I have to wait until October to bring it up with him. I thought a 'murmer' could indicate MVP? Any observations about this would be appreciated. blue

Thanks for the list, Spinner.

Blurry vision happens to me for quite a number of reason: anxiety, migraine, and it just happens. I find meditation a little disconcerting at times because my eyes will be blurry afterwards for a while. I'm noticing that my eyes are more often blurry these days and have decided it's time to make another appointment with an opthamologist, even if it's just to be reassured it's dys., or in my case maybe 'getting older' and nothing else. I have all sorts of vision problems and it's time I had my eyes rechecked by a proper eye doctor blue

Hi lfreem I have 'sluggish' pupils, (not talking uneven pupil size) first noticed by my specialist before he diagnosed me with pots. Years ago, when I started getting migraines, though, I looked in the mirror and found that one pupil was much more dialated than the other. This continued for some years although I haven't seen it in a long time. It could still happen occasionally but I don't look for it anymore. I had my eyes checked by an opthamologist -- I really need to wear multifocals now but I can't get the right prescription ( I tried so many times) but my vision changes so often that it's impossible to be prescribed a pair I can wear all the time. I use reading glasses for close work but I'm missing on seeing a lot of stuff now, that goes on around me. My opthatmologist told me with my dys/ and changing vision problems that I should forget trying to wear multifocals. But every now and then I pick out a pair from the draw I keep my selection in and try to wear them as I worry that I will one day need to wear them to drive (at the moment I don't) and I don't want to have to stop driving because I can't manage glasses. I think it's a good idea to see an opthamologist, at least once for a check of the eyes.. Not just a optometrist. As opthamologists are highly trained doctors who find rare eye problems.

I think the RPAH allergies and intolerance clinic here in Sydney, Australia, recommends the vanilla flavoured ensure because it is likely to cause less problems. I'm far from a complete fan of the clinic's food progam because I now belong to one of the 'small' group of people who become more sensitive to foods that they have elimated on the diet, than when they were first advised to go on the diet. Just putting this out there but maybe you would want to run this suggestion by a doctor. Cyproheptadine aka Periactin(a first generation H1 anti-histamine) makes me very hungry when I take it and I feel less nauseous. It is used for people with anorexia and also anorexia nervosa, sometimes. It can help with migraine control (that's why I took it for a while -- mostly it helps teens with migraine control but it did help me for a while when I took it and I was entering my 50s) but will probably stop or dramatically slow down your digestive system if you have constipation problems (that's one of my gi problems). I doubt that would be a problem for anyone who has diarrhea, it could help. I'm no medical expert, actually I'm almost a complete ignoramus when it comes to all knowledge medical so if the cyproheptadine suggestion makes any sense don't take my word for it but see a doctor first. Just thought I'd pass on this info. I have seen a you-tube presentation by a pediatric dysautonomia specialist (sorry I didn't keep a link, but you'd probably find it if you did a search on you tube for it) who uses cyproheptadine as well as other meds in his teen patients. blue

Hi Vermee, Expectation that one in four will be allergic to meat. Yikes. I wonder if the meat industry are responding to this and scrambling to find out why? Hmmmm.... blue

Hi Katy, Hopefully your migraines will resolve. My fingers are crossed for you. If I could cheer out loud at the moment I would -- it was great to read about your improvement with temp. dysregulation and heat intolerance. Yay! That's good news. blue

Thanks Mike, I've sent you a PM. Ta, for the offer to share your info. blue

Hi mike, i am glad you found an interested doctor and got a diagnosis and treatment plan. I injured my neck when I was 20. There were no Mri machines way back then and although I had tremendous head pain following the injury no doctor even thought to X ray it. That was 38 years ago. My pain specialist believes my neck is a major factor in migraines and vertigo like symptoms and I agree with him but nothing to do with my neck problems has shown up on an Mri. Your post was very interesting. Blue

Hi Katy, I am glad to hear the surgery helped with some symptoms. Did they surgery help with your migraines? Blue

I was so fit before I was flattened with pots that my resting pr was in the 50s and also the ekg showed patterns that led the doctor to ask me was I an athlete, did I compete? I was a 40 year old mum of three at the time who did a lot of exercise. So much for Levine's theory.