gwensvilla

have to second macks mom....just been to london to see our pots specialist, Prof Mathias.. my daughter he referred to a gi expert, and she was prescribed erythromycin small dose and domperidone also..plus another one.. will need to look it up... and that has sorted the motility, stopped the nausea... and now from the forum, I know how and why!!!! Gwen

my daughter is 19 and is now about 120 lbs approx 5 ft 7 she is eating no sugars, next to no carbs and we are doing low gI stuff at the moment.. cant control the nausea or light head at the moment.. she was doing great on the octreotide, but we have hit a bump at the moment..awaiting the insulin results ..the sudden hunger really gets to her!!! gwen

Endo has reviewed results and has now said she has impaired glucose tolernce and low vit D and a high pth ??? 52.8 when norm is upto 50... whatever that is.. we await news of insulin and adrenaline.. Gwen

My daughter did a 5 hr gtt test... endo says results are normal.... pathologist thought they were weird.. sending them off to our prof..but cant until insulin draw results are ready. early a.m 2hrs before test only med taken test start pt. 96 fasting (5.30) went to 238 after an hour (13.4) then 230 after half hr (12.6) same med taken between this 12.6 and before 9.7 then 170 -do- (9.7) then 140 -do (7.9) then back upto 201 after half an hr (11.2) then 154 after an hour (8.6) then 92 after an hour (5.2) then 64 after an hour (4.0) does this really look normal??????????????? she was ill the entire time from taking the glucose..nauseous.. symtoms varied with high and low readings.. these are our tests results.. which were in line with pathologists..awaiting confirmation took the gtt as she has been getting light headed, , nausea and bad heads.. but now she has developed a sudden ravenous hunger.. at times.. followed by a light headed feeling as if she hasnt eaten in days.. the hunger doesnt go away when she eats.. she is ill if she has sugars, carbs are now a problem again, which we had been managing.. any ideas??? (on food or results!!)

hi there, just my 2 penneth... watch very carefully what you are eating and the reactions to it... we found sugars were the worst offender... followed by the white carbs ..white bread, potatoes, white rice ... by cutting out sugars.. my daughter had an immediate improvement in symptoms..then when we eliminated the bad carbs,, further improvement..we found that her best time of day was 1 a.m when no eating was being done..or it had been a while since she last ate.. we informed our prof of what was happeneing he ran a batch of autonomic tests, blood tests etc, and taking into account her new diagnosis of eds..he decided to try octreotide...(to try and prevent so much the blood pooling in the abdomen...particularly around meal times) this has proven a turning point in functionality...big style...she for the first time is no longer bed bound..she can get around the house and we are now trying to increase her mobility... he also upped her ivabradine to help control the tachy, she is on fludrocortisone to bump up bp and blood volume..and she fluid and salt loads.. since you mentioned food and after food reactions, I thought this was worth mentioning..since the octreotide she can tolerate some carbs a little better... but sugar is a no no still..

I think it is about time we had a PURE POTS set up in the UK... it is an illness over here which the doctors are happy to send you home and forget about you. They havent heard of it, dont know what to do with it, so they mostly do nothing, I have been fortunate, from my gp to our profs.... but I gasp at times at what I see/hear people flailing about trying to get some sort of help.... As it is not highly diagnosed over here... very little help is available.. there is very few knowledgeable people dealing with the illness..... Stars is the only widely known body that has in-put... they are great and also have sessions at the arythmia alliance conferences which are WELL worth attending... CFS/ M.E manages to get some assistance for their people,ME North EAST helped us greatly. eds has managed to get a forum etc going...(another illness with few experts in) Maybe its something we need to consider....as there are now a few of us on the forum. Gwen PS persephone... you have a p.m. thanks!!!

were the gall bladder problems from the octreotide??? and was the long acting one as effective as the daily injections???my daughter is on 3 injections which gives her a time span of function 10-12 hrs... (at the moment she is still too fatigued to extend to a 4th dose which the prof says she can try... Gwen

does the compression help to stop the swelling in the ankles??? or blood pooling??? my daughter currently isnt wearing any (conflicting medical advice) Gwen

Yes Prof Mathias admitted us, Flop you are right he wants it done initially in a monitored environment... he has a great autonomic nurse also..who gave us loads of practical tips aswell...Lianne also gets 2 doses out of a phial and unlike me (needle phobe) she has no problems injecting herself... ref the month long version... would this actually work..for this application... we are well pleased with the current situation with the octreotide, as I said previously atleast she is functional now.. a transformation to the bedbound, non functional situation we were in.. now trying to contend with the swollen feet situation, its always one step at a time.. Gwen

Octreotide rocks!!! see my other posting on the changes it has helped my daughter with.. to become functional.. not back to normal (deconditioned badly from bed bound..) but functional!!! Gwen

when I was in florida I bought a pair of shape ups (skechers) as I was told (rightly or wrongly|) they are a similar idea to the mbt shoes.. they were $109..as I take the same size as my daughter we both may try them.. her for circulation/ pots me to get fit.. I spoke to a lady customer in the shop and she had taken them and showed them to her back specialist, as she had told him how they had alleviated her back pain.. he was well impressed and was going to recommend his patients to try them!! will report back on how we find them.. Gwen

My daughter has POTS and she also went to see her fabulous consultant at St Marys, did various tests, also diagnosed with eds.. the consultant was fairly sure which route he wanted to go. We had to return to the Neurological Hospital in London for further tests (and of course a further 6 hr each way ambulance ride.. as my daughter could not sit up without fainting..) He started the OCTREOTIDE 3 times daily and she is now FUNCTIONING!!!, she can walk a bit, (round the house, to the car, sometimes even from the car around a shop), she can stand, sit and she can now eat, and even sleep.. the improvement was virtually immediate and she is now trying to recondition from the bed bound..(struggling trying to get to a physio who understands the condition, and we are about to invest in a recumbent bike..) she has a big part of her life back. She had worked out that it was food orientated and in particular sugars and carbs. (We need to thank a member of this forum for helping with us on that, she knows who she is... and thanks) We have worked out a diet of safe foods, which along with the octreotide is proving amazing. I would recommend anyone who feels there is a connection to eating or post eating or abdominal pooling to give this a whirl.. my daughter could not tolerate midrodine as it made her really ill, so we are grateful for this.. it gives her 10-12 hrs of a day.. and we are hoping to extend to a 4th dose and try to byild up strength and stamina (carefully because of the eds!!) We have a huge thanks to give our Professor in London!!! Gwen

How or in what form of pots would histamines be useful??? Gwen

My daughter is mainly a stomach pooler, with discolouration in her legs/feet, but only small amount of swelling in the feet...which flow is she likely to be...?? Prof says because she has EDS 3 it is likely vasodilation of veins in her legs.. she has low bp. she reacts quickly/badly to heat/ cold.. she is on octreotide for her abdomen pooling and it has taken her from non functional bed bound passing out, to being able to walk around the home getting out and about with us in the car, she can do some walking out (restricted, but trying to get reconditioned and build her strength/stamina up from deconditioning whilst bed bound) we also supplement with her wheelchair... it has been ABSOLUTE turnaround in functionality.. she is on ivabradine for tachy... and fludrocortisone and fluids/ salt tablets...I guess for blood volume or fluid retention. EDS in the UK is STRONGLY linked with POTS and I believe there is research going on into it... Gwen

my daughter had a few sporadic faints during exam times mainly,then we flew to the usa via germany..she passed out in germany and again in florida and then just started fainting every day sometimes several times per day, until she was hospitalised and reached the point where she couldnt sit above a 30 degree angle...she has since been diagnosed pots in the usa and then was seen by a UK expert and diagnosed as pots and eds...Gwen