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

I benefitted greatly from octreotide. I didn't have blood pooling.

I didn't have to stay in hospital for monitoring.

I learned to give the injections (every few hours at home) - no problem. Eventually, I could use the monthly long acting octreotide.

I was getting great results. Eventually I had to stop because of high blood pressure and gall bladder problems. At that point my endocrinologist and my internist did not want me to continue.

It was fine while it lasted - about 10 months.

Blue Cross covered the cost of the injections.

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

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

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

guess what I am saying is that there is probably a margin of error in our responses here because some of the questions ask us to infer which signs of POTS we have from which symptoms we have. As many responses state or imply, actual testing or medical screening for hypovolemia, EDS, Raynaud's phenomenon, etc. has not been performed. I think perhaps one of the most fascinating conclusions you can draw from your questionnaire is that despite having symptoms of these diagnoses, POTS patients are routinely bypassed when it comes to actually being tested/diagnosed for these conditions.

One thing that you didn't ask, which I would like to see people answer, is how many people have had one (or more) of their doctors give them a classification for their POTS. My doc never even mentioned the different types of POTS to me, and I honestly don't even know if he's aware of them.

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.

Ive been on the phone today talking to my friend who is a medical researcher in other fields about POTS. He has developed quite an interest in this area now that Ive gone downhill in the last six months. His field of expertise is indigenous health and diabetes II but he knows his stuff and is a pretty smart cookie.

He and I have been doing lots of research on the current medical opinions of the causes of POTS and we just wanted to see if these different opinions seems to pan out in terms of particular symptom profiles. To do this we thought we'd just ask you guys ten questions to get some anecdotle info or a Poll on some quick questions.

Dont be fooled into thinking that this in anyway some sort of proper medical test - as its just more an exercise in anecdotle information gathering. So I dont expect that anything gathered will provide us with anything concrete but it may just help my understanding of the condition a little.

Ill ask the questions now - if your a POTSIE like me please take the time to help out that would be great but I cant promise it will demonstrate anything useful.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? legs and stomach

2. Have you ever been diagnosed with EDS or suspect that you may have it? yes dx

3. Do you experience symptoms when lying down even after a night of sleep in your bed? yes

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? no

5. Have you ever been informed by a doctor that you have low blood volume? yes

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? yes

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? no vasodilate...but cold hands and particularlyfeet

8. Did your POTS arrive suddenly? yep

9. Is your skin pale? yep

10. Please the top 6 worst symptoms that you experience with POTS:

tachy, syncope (when not on meds) dizzy,nausea, fatigue pain in ankles/feet

Thanks heaps for your contributions!!

how do they do the blood volume test... and what is the henodynamic test?? Gwen

\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!!!

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

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...

I just looked up this med on the web and it seems interesting--and also quite related to the other post on resting heart rate. This med lowers heart rate using a different means than other meds like beta blockers. Apparently several studies have shown a link between high resting heart rate and heart attacks, so doctors are focusing on heart rate in addition to blood pressure. This medication was developed to help reduce heart rate in healthy patients and patients with established heart disease.

The controlled studies on the drug showed good results and few side effects, but those didn't focus on POTS patients. There are a few medical reports of individual POTS patients doing well with this drug--lower heart rates and improved symptoms. But those are just a few isolated reports in journals, not more general reports. Does anyone else know about this drug? It's new and, from the reports, it looks like it might have caught on in Europe and Australia ahead of the US. But it seems like something to find out more about. When I looked back at my son's medical reports I was amazed to see how high his resting heart rate is--and that's before he stands up. Yikes!

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

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

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