Jump to content

gwensvilla

Members
  • Posts

    29
  • Joined

  • Last visited

Everything posted by gwensvilla

  1. 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
  2. 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
  3. 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
  4. 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!!)
  5. 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..
  6. 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!!!
  7. 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
  8. does the compression help to stop the swelling in the ankles??? or blood pooling??? my daughter currently isnt wearing any (conflicting medical advice) Gwen
  9. 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
  10. 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
  11. 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
  12. 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
  13. How or in what form of pots would histamines be useful??? Gwen
  14. 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
  15. 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
  16. I believe dr Julian Stewart has on going clinical trials..you may get excellent help for little outlay, there is no doubting he is a leading expert, dont think he covers follow ups..worth researching the trials...Gwen
  17. looking forward to his questions...its nice someone (read anyone) has an interest.... perceptions can be amazingly different person to person,and sadly many drs dont either do the tests or tell the results..leaving a gap in the patients knowledge. you would really have thought a researcher who had access to this site would be sitting on a HUGE pool of knowledge...and dare I say even volunteers/guinea pigs!!!!! The answers are here ...waiting for them!!!! Finding the cause would help find the cure.. but I guess until then the treating the symptoms will have to do...and its sad that people even struggle to get to that point...Gwen I get your point and you are completely right. I never suggested that the exercise didnt have obvious and sufficient problems - perceptions do not equate to facts. What we should have done is ask specific questions that could not be as easily interpreted. Questions about obvious facts. But even if these is some interpretation involved, if enough patients responded and there may still be a suggestive pattern that might be helpful. As for the types of POTS - most doctors tell me that at this stage they are irrelevant because treatment protocols are the same. What Ive been told by three different POTS specialists and what I think we have proven with this study is that you cannot differentiate a person as hyperadrenergic rather than a blood pooler based on their perception of hyperadrenergic symptoms, because all forms of POTS can present with the same level of sympo-excitation/ANS overstimulation, whether it is the primary cause or secondary to blood pooling. So most people who have been told they are hyperadrenergic simply means that they are presenting with sympo-excitation as a symptom and this does not mean that they have norepinephrine disfunction. The similarities of symptoms described was a bit of a surprise I thought. Again this doesnt really highlight any significance to the break up of POTS into different models as treatments are all still symptomatic. My friend wants to write better questions and then see if its more telling later in the week.
  18. how do they do the blood volume test... and what is the henodynamic test?? Gwen
  19. \karen are you using the midodrine along with the octreotide..and florineff.. I read research on it when our prof mentioned midrodine and octreotide as a combo med... and the 2 together apparently double the effectiveness of the 2 added individually... if you see what I mean...( 1 + 1 = 4 ) interesting research.. I too hear about the new med.. it is on quite a large scale clinical trial... fingers crossed... Gwen Keep plodding on... and call in here.. it is a mine of useful info!!!
  20. we are making a table, to pull the readings together... tried asking our dr, one of our profs and no one wants to look at it..so going to take the info/proof to them...in the meantime cobbling an eating plan together...Gwen
  21. Hoping sandy or any with med info may be calling in.... my daughter has been having awful trouble with nutrition, we noticed (and posted) that when she has anything with sugars her tachy is worse and she feels terrible..it is also carb based aswell... sooo have asked yet again for a gtt test with the insulin draws...no one wants to know, but I am not giving in...and getting louder.... decided to do some hopme testing... todays home test results were starting from a baseline a.m of 4.1 jumped around the day between 7.6 and 8.2 then shot up to 16.4 then within half an hour down to 7.4 then 6.2 and last one 5.0 just before the 16.4 she had an orange...could this do that..???. are these normal...??? seems a bit freaky to me.. she is eating mainly protein and veg and nuts...cut out the sugar, following low gi regime and no dairy... her bp during the day was reasonably stable, her resting hr was around 58-81...she usually hovers around the 60-70 mark... any one any input as to normality...
  22. My daughter is on it... it reduces heartrate a few beats per minute.. I dont think it is holding the hr down anywhere near as much as it needs to..she still shoots upto 154 standing (on the med...) symptoms verrry slightly improved.. dont know if that is the fludro or the ivabradine.. suspect the fludro as, when she started that the syncope reduced quite a bit...Gwen
  23. my daughter has experienced total insomnia since she has taken fludrocortisone...it turned her sleeping world upside down...she is till taking it..dont know how much it helps..maybe this ddvap might be wortha shot..does it do the same job...I willl have a peak at the info...gwen
  24. I know how you feel even though I am not the patient.. as I got fed up of arriving in hospitals to find my daughter was being treated as 'lazy' sleeping all the time and when not being to sit up beyond 30 degrees, she was being asked to walk to the toilets or hop out of bed and walk to another trolley etc etc and was treated badly,disrespected bcause of her condition, as you say the innuendos and the rolling eyes... we all wished she could, no one more than her...!!!!!!!! people dont seem to'get it' even when you repeat it time after time after time.... only now can she sit up for any length of time and is starting to stand up even just for seconds... but no doubt we will be walking the walk of the rolling eyes for a while yet... dont hink I will be holding my tongue though, I can tell you... gwen
×
×
  • Create New...