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came across posts by EDSers today that find anti histamines just dont work for their allergies… might adding in (or replacing ppi s with)
zantac or similar possibly make the anti histamines work??????
sorry -oops- just to be totally clear…
do/can I add the zantac (on top of the ppi) or do I take it instead of the ppi?
ello dr d : ) and everyone : )
after years of ‘knowing’ (from being told by my EDS consultant and reading up on things) that I most likely have various autonomic dysfunction probs (pots, orthostatic intolerance,exercise intolerance, temperature regulation probs, and the ‘oddness’ that if I stay sitting upright at a dining table for ‘long’ after eating I will get nauseous, bp drops and/or I’ll get a ‘gastric and circulatory system collapse’)-
I finally have been referred to an a d clinic this year- and yep no surprise early indication shows a d- am currently awaiting tests to find precisely what kind of a ds I have (waiting times for tests… some 8 months…)
and yep adrenergenic pots does sound poss… also because my gastro symptoms seem to fit, diarhoea-like stools are my normal (and I’ve only ever had constipation maybe 4 times in my whole 52 yrs), bloating is normal for me and I have plenty of nausea probs…
(so are we something like houndstooth patterned zebras? lol )
do you with adrenergenic pots also get that thing that when you really push yourself you can really “fly on and on and fly high on adrenaline” (=keep keep going) BUT you then cant really switch off/relax(sometimes for days) until you just ‘crash’ (and stay ‘crashed’ for days)?
(I do try to avoid this state, but life sometimes just wont let you… ; ))
oh I have also since childhood been cyclothemic, may that play a part?- or is my ‘cyclothemia’ poss due to the a pots???
and nope I dont think VEDS is a concern for me, as I was dxed by prof rodney grahame (our UK equivalent of your dr francomano)- I just think that there’s quite a bit more overlap of symptoms poss than was previously thought.
and yep I have read your fab driscoll theory- THANK YOU!- and I will soon try the zyrtec/zantac combo
oh dr d could you please have a look at my “no stereovision’ post- I’ve added some q s there
re the zantac/zyrtec combo… I already take lansoprazole (a ppi) re stomach acid… would just adding zyrtec work re mast cells or do I need to try switching to zantac instead of lansoprazole??
afaiu lanso does work differently than zantac re stomach acid… is that right??
thank you for the nail link!
I have the longitudinal ridges (but they came on and get worse ‘slowly’ over the years, so I guess… the age thing… ; )))) – and luckily I dont have the terry’s redness)- and yes… oops I am a smoker… but my mum who’s never smoked in her life… also has them
my nails actually grow v fast, but are v weak (but I’ve always been a nail biter- though always a ‘bite hem as short as you would cut them”- NOT damagingly short)
and like deb, I have no moons (apart from on thumbs) either
and in the last year or so I’m also getting pitting on several nails… but then… I obviously do have a connective tissue disorder ; ) and I have also had a bout of alopecia areata (brought on as far as I could tell by a 3 week bout of too much physical and mental stress)
and yes, I also have high cholesterol despite NOT having a high cholesterol diet…
me thinks I really ought to try anti histamines…
(might maybe at least ‘cure’ me of my seemingly-allergic-to- sudden- temperature- drop sneezing fits and 10mins of ‘having a cold’ symptoms)
oh owww… hugs for also likely having chiari…
though I’m wondering… (but I dont really understand these things v well… so it is really just ‘wondering’ )- the ‘when swelling/muscle tightness is there= no autonomic probs, swelling/tightness gone=autonomic probs come back”… I’m wondering whether rather than ‘true chiari’ you might have craniocervical instability??? (or …maybe you are cursed with having both???)
the only things I know of that can be helpful with craniocervical instability are to have v good working core muscles in your neck and special neck braces
hope you will find out if it’s chiari/c c instability and hopefully someone will be able to help you with these things-
one american surgeon that seems best informed about EDS/chiari/cranio… (he works closely with dr. francomano) is a mr. fraser henderson.
how’s your shoulder/neck/head posture?
and which muscles are you using to try and have good posture/hold your shoulders/neck/head?
until I saw an EDS understanding physio who found that I was using the wrong muscles and then worked with me on using the little small core ‘stabilsing’ muscles to hold myself, instead of what I ‘naturally’ did using the big outer ‘movement’ muscles- those big muscles were always hypertight=bringing spasms, perma pins and needles from my shoulder to my fingers and even blood flow probs in my arm
and ‘good posture’ of course wasnt really poss like that- but he also had to first teach me where exactly my shoulders were supposed to sit, they were ‘normally’ mostly out rather than in their sockets-
since then, and as long as I keep up with the exercises at least semi regularly… I dont really have those probs anymore ; )
I also have ever multiplying spider veins on my face (and nope I am not a drinker ; )) and legs,
sometimes small blood vessels in my fingers and toes do, I think, just burst- without any reason (no knocks or whatever)- it feels like someone suddenly stabs a needle in my finger/toe and wildly wriggles/stabs it around and then I’m left with a deep and “bloddy under the skin’ bruise that takes ages to go away
( and of course I frequently ‘normally'(meaning without the ‘needle stabbing’ feeling, actually dont feel it at all, bruise ‘without any reason’), my veins are v visible (though I think that’s in part due to my v thin skin)-
and I seem to have a vein that’s maybe kinked or in the wrong place (a very gentle osteopathic manipulation of my shoulder made me instantly pass out, blood flow to brain was interrupted)
and to me my pots and orthostatic intolerance are in a way also kind of ‘vascular issues’ – blood is not able to be pumped as much as necessary to my brain when standing, not fast enough when going from sitting to standing, or after eating, and my heart goes tachycardic…
and sometimes when sitting and feeling all relaxed my body/vascular system(?) or would that be adrenergenic system (?) goes haywire and sends me into a ‘body panic attack’ (which used to, but no longer, also give me a bit of ‘mind panic’) i.e. I get incredibly strong body “fight or flight” responses for absolutely no external or ‘mind internal’ reasons
I’ve had POTS probs since at least teenagehood (and other autonomic dysfunction probs since my 30’s)- but am only now (at over 50) awaiting tests at an autonomic clinic – (but yep initial simple standing/sitting/lying down bp/pulse rate checks indicate POTS)
and my mum sure has potsy probs too- both of us have EDShypermobility type
sorry I’m atm v busy =also v pained and exhausted so I cant search for the particular threads/posts atm- in a couple of weeks hopefully I can.
but if you are v eager ; ) you could search for them on butyoudontlooksick.com/boards/index.php?sid=9946304f8cbfa632d85add2f04c6e53a , hypermobility.org/forum/index.php, ehlers-danlos.org/forum/
: ) xxg
big hug for you beachsandangel!
diana- if you are ‘impatient’ to try and find more peops with both MS and EDS dx- I could send you links to other forums where I have encountered peops with both dxes- they are quite rare though… and there seem to also be peops with lupus&EDS;/ and families where one has EDS, another lupus…
and there are quite a few EDSers where MS has been suspected due to symptomology (even after EDS dx/and by EDS specialists)- but tests didnt show it-
and I so remember one post where apparently some EDSer’s myelin sheath was ‘mechanically’ damaged -due to wrongly moving bones literally rubbing it away… ?????… also bringing MS typical symptoms…
if you and family are sensitive to MSG… maybe also look into avoiding foods that naturally have MSG in them – afaik that includes things like broccoli and chicken for example
re tremors- ime sometimes … they can have a v simple, but all too often overlooked/disregarded cause- posture and ‘holding unnecessary tension’
I’ve had episodes of tremors in arms/hands and loosening shoulder/neck/arm muscle tension and correcting posture can stop them- same for my mum who got dxed with “old age tremors”… yet when she hasnt got her shoulders ’round her ears’… no tremor…
pity enough due to in part our proprioception issues we have a tendency to ‘grip/hold/do’ things with far too much muscle tension- so doing things in a ‘normal/fairly relaxed’ way is quite hard ‘brain work’ (we have to ‘consciously’ do things rather than ‘just do’)
Hi everyone : )
sorry I havent had time/head to do more reading… but I sure will asap : )
re hormones- one of our UK specialists prof howard a. bird (now retired) has written some articles on hormones and hypermobility- cause in his decades of running a ctd clinic he found he was able to ‘predict/tell’ when a patient had gynaecological problems- often before their gynae’s could and that bendy peops who took ‘progesterone rich’ pills could indeed find that they subluxed/dislocated much more frequently after being on it
so he found that progesterone seems to make ligaments laxer, oestrogen tightens it- so quite an important thing to consider re contraception
but also explains why we (and normal women too btw… there is a study on female athletes) so often just before/during (?? sorry foggy head) our periods are more accident/injury prone- progesterone levels are higher at that time
if however you have a gynae condition that is treated with progesterone… you are caught between a rock and a hard place : (
mom- phentermine? had to google that and it seems to be an appetite suppressor that can even be bought online ? and nope, no worries I wont buy it ; ) but would you have a link to that mayo study that suggested the use of it for pain? just out of curiosity… as said my chronic pain levels really have lessened a lot
the “mild hydrocephalus not being so benign and poss prevalent in EDSers with pots” theory could to my mind also explain why we c t disordered peops seem to have such ‘sensitive’ body systems overall- i.e. we seem to often have major reactions to/symptoms from minor ‘imbalances’-
diana- is that a possibility?
re diamox- I will wait till I’m seen at the autonomic clinic again and ask them about it- my gp, in one way luckily, lets me take the lead on treatment options- but I’d prefer some doc input first
oh diana- this layperson is baffled by the seeming ‘paradox’ of taking ppi=lessen acidity in stomach/digestive tract and diamox=raises blood acidity levels ?
could you please explain this to me or point me somewhere?
: ) xxg
saw part one (and started a topic on it- watch out- I do at times also suffer from verbal diarhoea ; ))) ) – but I couldnt see the links to the article- do I need to ‘sign in/log on’ to youtube to see link??
can you take zantac on top of a ppi? I ‘irregularly regular'(also see my ‘head circumference study’ post) take lansoprazole 15mg
oh on an ‘allergic tip’ (dont know where this could fit in in the forum)- and i’ve never come across anyone else with this- a quick and brief temperature change from warm to colder (like in winter getting out of bed and dressed) always brings on a sneeze attack (10-20x in a row) and ‘cold symptoms’ (runny snotty nose) that last 1/2-1 hr and then are totally gone…