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

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 julie,

One of the reasons for being tested first is to help motivate those of us who need a lab report

to remind them of why they need to be gf. I definitely benefit from seeing this in writing.

The other reason is to see if you have celiac disease. I wasn't tested until I'd been gf for 17 months

but I still had substantial damage. My pathology was negative tho.

My gi determined that I was a celiac based on my dq2 gene, the amont if damage he saw and my

reaction to the gf diet. My stools show gluten antibidies too tho.

Being diagnosed as a celiac also ensures that if I'm hospitalized, I won't be given any gluten.

Fwiw, I see a lot of people who try eating gluten for the sake of being tested but they get too sick to

continue so be careful if you decide to try this.

The celiac expert I saw post gf told me that in order to get a good biopsy on me I'd need to eat gluten. But based on the fact that my

ataxia had gone away by then I could tell that he didn't think it was a good idea. I really

appreciated him for making that clear to me ...

Fwiw, even tho there is a wide variety of gf foods on the market now, most of them aren't healthy.

From what I've seen, many celiacs are addicted to these foods and have a tough time giving them up. Me included . .. part of that could be from a candida overgrowth but part of it is just out of habit.

Candida can be treated via diet and suplements. I've yet the break the drooling reaction I get from seeing

processed foods .. Lol ..

Tc .. D

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

hi serbo,

I know what you're going through .. I've been doing my own research for 6 years now

and it's still overwhelming.

Fwiw, I was more allergic to my dog who had a chronic yeast problem. He refused to

let me clean his ears so I really couldn't get a handle on it. If I bathed my dogs in dawn

Dish soap every 7 days or less, it helped but not enough. My vets groomer recommended

this ..

I have to wash my bed linens every week too. Once my pillow cases get soiled, I start

waking up with sticky eyes.

Just out of curiosty, are you getting outside in the sun everyday ? I can't always do this and it's not easy for me to do, but it sure makes me feel better. I stay out for 2 hours normally. No sunscreen. I moved to the beach back in june and can't get enough of it ..

I had a non stop runny nose, sneezing, post nasal drip, etc before eliminating my known food

intolerances. Funny story .. I have a freind who sneezes non stop is she eats dairy.. Lol .. Now

there's a clue you can't miss ...

Tc .. D

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 (

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.

Vsl #3 has traces of gluten, dairy and soy ... Yikes, what are they thinking ? I know this probiotic

is popular in the autism community so I'm sure they know this too.

I take megaflora and it was helping my digestion but the last bottle I bought didn't have any live bacteria.

I noticed that it wasn't helping my digestion so I tried fermenting it in warm sugar water.. But nothing grew.

I would've thought out of 50 billion bacteria, some would've lived.

I ferment red cabbage in salt water for probiotics too but was trying to get more variety with the

Megaflora.

Um, if you're interested I have a wild suggestion on the diabetes insipidus. I used to go all the time too

but after takin Azo with probiotics for a few weeks in a row this stopped. I now only take azo as needed.

We have bacteria, or should gave, in our urinary tracts and this may be able to fix that problem. It

worked for me ...

Julie,

Thanks for explaining allergic reactions. That sounds like it could explain low blood volume too.

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

just a note...it's not uncommon to get more symptomatic after starting a probiotic. The die-off from bad bacteria can wreak havoc. Sometimes you have to go through the "unpleasants" to get real results...it can actually be an indication that you're doing the right thing for your body.

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

I started seriously going gluten-free today Happy to see that it's been helping you.

I can offer am idea HOW the gluten is affecting your overall health- although I'm not sure how DDAVP plays into it all. If you experience an allergic response or hypersensitivity to anything (like gluten) your blood vessels DO tend to become more permeable and dump plasma. If it is significant, you actually experience anaphylaxis/anaphylactoid symptoms. Dizziness, nausea, faintness, etc. are all a part of this.

For my son, his trigger is milk protein, and even trace amounts will affect his blood pressure, GI symptoms, etc. Dr. Rowe (from Hopkins) explained that your body relishes the lack of the offender and dramatically reacts to even trace amounts after a period of abstinence. It is like you established a new healthier new normal and your body, in an attempt to main homeostasis- revolts. Maybe try a different probiotic. We have to order Culturelle that is dairy free.

Julie

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

not sure what pene stands for, but i have EDS and POTS. I try and walk for 2 hours every night, and do a 30 minute walk @ lunch where possible. Often it's just pacing up and down my street at night for 2 hours listening to an audio book, boring but it helps. If i have a bad day I do walking circuits around my living room rather than going out. My Dr Recommends using a squash or stress ball and squeezing for 30 seconds and then releasing every so often to keep BP up when standing. I kind of do this anyway when walking, i take a 2 litre bottle of water with me and have got in to the habit of curling it which helps. I searched for squash ball on the forums and got no results, does anyone else squeeze a sports ball of some type when walking around to keep BP up?

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