Serbo

i've even read that EDS 3 patients don't respond to local anaesthetic any way so may swell go with out ttp://jrsm.rsmjournals.com/content/98/2/84.full Local anaesthetic failure in joint hypermobility syndrome Alan J Hakim Rodney Grahame Paul Norris Colin Hopper

I have a 24 hour pH/impedance test on Monday. They basically put a tube through your nose in to your stomach and leave it there to record Ph level over 24 hours. At the moment I am allergic to everything for the 1st time in my life so a bit worried about having a tube in my throat. Has any one had this test before and can tell me about it? i think they give you a local anaesthetic to put the tube in. As a POTS patient do i need less anaesthetic? i'm worried about a reaction to the anaesthetic, or even the tube thats left in. Considering pushing the test back until i have these allergies figured out and under control but suspect i'll regret not having the test. It's not the tube I'm worried about, it's reacting to it or the anaesthetic. Thanks

hard to remember exactly how i was feeling when i stopped gluten. it was a subtle change from daily nausea to none. can only really appreciate it when you are back on the gluten! From memory there was certainly a period of digestive uncomfort and change. However I was feeling so rough at the period i gave up gluten, i would be hard pushed to associate any worsening with the withdrawal. I think you might have hit the nail on the head with: One other idea I had was that this is an MCAD thing. We masties have "Goldilocks" syndrome and thrive on homeostatis. Maybe this was too much of a change too quickly??? I withdrew sub consciously over a period of weeks i think until i realised i wasn't eating gluten any more.

not sure about specific symptoms for males, will have a think and come back on it. When I was not on DDAVP/meds Shaving was hard work. To allow a stand up shave i used to have to down a half pint of water half way through the shave to push up BP. Annoying!

^ - Also back with my parents while i get this sorted so i can relate. I got DI diagnosed via an endocrinologist. You will need to do a dehydration test. DDAVP raises BP so all its a good tool if you need it.

best to get checked for DI. DDAVP can help.

In the past i've taken Zyrtek, messed me up big time the day after. Couldnt stand up for more than 30 seconds without fainting for a day, and most recently taken Loratadine. Loratinde gave usual drowsiness, ectopic beats, and tachy, issues with breathing which kept waking me up.

^ Thank you for info Julie, much appreciated. Saw my Endo today she did a serum tryptase test, and urine collection. I was feeling rough but no had no hives or itchyness at the time so I'm not sure if the tests will be of use. Seeing my Derma in a week, hopefully he will do full allergy testing and repeat tests. There is certainly something not right. I was standing in the same room as my dogs for 3 minutes earlier and suddenly felt like I was about to faint. I do get dizzy with stress/stimulation (normal for POTS!), but never the hives or allergic response as I understand an MCAD patient would. Thanks Aaron

Hi Dizzy - I've probably got the wrong end of the stick but is there a link in gluten free foods and candida over growth? Thanks

Thanks Rich, what are the accepted or recommended antihistamines for POTS sufferers?

seeing my endo tomorrow about this allergy blow up I have had. Going to request MCAD testing, has the testing moved on @ all, or is it still the same 2 tests? Getting annoyed now not being able to walk or go near my dogs.

my work only has glass lifts/elevators on my floor (5th), I find fixing my gaze on my feet when i'm in the lift helps

That's really interesting about it being the yeast problem in the dog that was making you allergic, my family are getting a similar reaction as me to the dog, so maybe it's the dog not so much me thats the issue! I'm militant about the sun, even if it's not sunny I'm in the cloud ( or rain!) for as long as possible. I dont do dairy, but if was sneezing with my morning bowl of cereal i think i'd have to give it up! I saw my friend today who has MS, he's on no meds, in remission and lives a normal life. he swears by the Mc Dougall vegan diet ( ). Thinking I might lay off the Paleo and give this a try minus the legumes and grain and see if it helps with the allergies.

Thanks Dizzy. Your right Mack's mom did answer. I have never had allergies apart from hayfever before so just shocked at the way this sensitivity has come on. After taking an antihistamine last night kept waking in sleep every 30 mins in tachy with hives, felt like I was allergic to the bed sheets and every piece of clothing I have put on. I understand it's all part of EDS but struggling to decide what I am allergic to at the moment. Keeping away from my dogs, polyester and all sorts at the moment. Hopefully it will pass. Appreciate your reply.

Just a bump for this thread. Off to see my Endo on Tuesday as DDAVP seems to have stopped working for me. Only cause i can think of for it is reintroduction of gluten and dairy in to body. Today had a load of goats cheese, followed by big allergic reaction for me and DDAVP still isn't working. Does anyone else have days or a few days in a row where they need an extra dose or so of DDAVP? Endo says this is normal, but i hate not knowing why DDAVP decides to stop working on some days. I googled DDAVP stopped working. Seems some people find the change in seasons can be enough to make them need an extra dose.

I know it's packed with all sorts! Off to research the PBs you mention in your post. Thanks for the DI suggestion, whats AZO? Will also have a look in to that too. Thanks

i thought that might be the case. going to come off them for the time being until i can speak to the doc, maybe in the mean time i'll try and find a gluten/dairy free one. Thanks

Thank you Julie. Insightful post as always . I think you could well be right, these reactions could be a plasma dump. Although it's probably not an extreme reaction in an allergic sense, whatever is happening may be over riding the DDAVP. Good luck with the gluten diet, i hope it helps. Out of interest does your son have MCAD to? I was also allergic to milk protein as a baby, was fine for a while and now can't tolerate it.

just to bump this thread for some opinions please, was going to start a new one but probs not necessary... My Gastro has put me on this probiotic: http://www.vsl3.co.uk/ Meant to be the best one with most good bacteria. I have been diary/gluten free now for about 3 months until starting this probiotic. Since starting it i've noticed that my digestion is better, but POTS has flared up. Getting more random bouts of faint feelings/dizzyness, and Nausea. I suspect i am hyper or hypovolemic POTS, as i have the diagnosis of diabetes inspidius also which i am taking DDAVP for. When i have a "flare up", for me it means DDAVP very prematurely wearing off, body dumping lots of fluid and then all the roughness that comes with it. This happened to me today, and thinking back to my last flare when my body decided to fluid dump it was when I ate some gluten rich bread in a restaurant. So - I am thinking there is a gluten link here, but i can't rationalise how from a hyper/hypo POTS perspective gluten would cause the body to fluid dump or affect DDAVP efficacy. Feeling a bit confused here. Will stop the VSL3 tonight, but it's a shame as made digestion much better, and theres only trace amounts of gluten in there

they will examine you it, hyper mobility, skin elasticity, and other reflex testing. They look @ your history, e.g I have had 3 hernias, and take a lot of things in to account. I think if they suspect you may not be straight eds 3 they will refer you for gene testing

serbo, I've used little bouncy balls that I initially got for g-kids when little. Even a light squeeze with tennis ball would work ir those nerf/soft small rubber baseballs in toy section.Thanks, bought these which seem to help when walking

I bought the same ones in the end from ebay for quite a bit cheaper. Seller is in US and im in UK but still cheaper than the original link i posted, will let you know how i go http://www.ebay.co.uk/itm/200670022270?ssPageName=STRK:MEWNX:IT&_trksid=p3984.m1439.l2649#ht_500wt_1156

Thanks guys. Plan is to wear them underneath clothes. Think I'd look a bit odd otherwise walking round the office at work with those bad boys on!

Does anyone wear these day to day as opposed to medical compression tights? I am a guy so would rather wear something like: http://www.wiggle.co.uk/2xu-compression-tights-ss11/ Than full medical compression. Wondering if these are as good? Thanks

possibly just enclosed spaces causes heart to race, can even be a sub concious thing. i am the same, i even get my head MRI's done here because of it: http://www.uprightmri.co.uk/ Not even really anxious about the tube, just seems to happen