sj75

Thanks for that sue. I just wonder if some of the more annoying symptoms I'm getting is down to low oxygen levels as when im feeling faint my O2 levels are often in the low 80's??

I suffer with intermittant low blood oxygen levels which can really affect my functioning. When i have been in hospital i have always been put on oxygen. Does anyone here have oxygen at home when things are bad? if so how did you go about organising it? Im in the uk so would be particularly interested in how the process works on the uk for anyone with pots.x

Im afraid i cant help with any answers but just wanted to say i find the results very interesting. The result of having the nitro is shocking! but makes perfect sense. It would have been really interesting to see though what your bp and pulse would have continued to do without the nitro. on my ttt the bp and pulse kept going up and up until right at the end.x

i have H-pots to and my consultant was reluctant to put me on anything vaso constricting due to the surges in my bp. I am currently on bisoprolol, citalopram and clonidine for pots (have other meds for other symptoms to ). The clonidine is supposed to be good for autonomic issues as it works on the brain rather then directly on the vessels apparently. Im currently building up my dose as the aim (i think) is to get to 400 mcgs per day for optimum affect.x

i have pretty much every time of atrial arrhythmia. Had an ablation in 06 which made everything 200x's worse.x

im probably not much help as im also female but just wanted to say that medications can effect these things too. Off the top of my head i know some bp meds can affect mens erectile function and sensation and some ssri's are know to affect libido and abilty to orgasm. I was put on prozac a few years ago and completely lost my libido. I guess its logical to think that anything that affects blood flow and vessel contraction/relaxation and nerve reactions can affect the sexual organs to.x

its been suggested by my consultant that i try these and i was wondering if anyone has tried these and if so how they found them??x

my father in law has dilated cardiomyopathy and has a right ventricular ejection fraction of 11% (up from 5% originally!!!) and he still works, although he has to pace himself now. I agree that it could be an error for it to drop so suddenly. Let us know how he gets on Monday.x

ive got the report somewhere so will have to try and find it. My pulse and bp shot up really high if i remember correctly but the minute my o2 dropped to 80% they abandoned the test (think that was somewhere between the 5 and 10 minute mark). Interestingly i didnt feel to hideous at that point although it was 3 years ago and i expect my tolerance is less now. Would have been interesting to see what would have happened if they had kept it going but i guess its a bit dangerous to do on a treadmill.x

i dont buy that but these cardiologists are really great at sticking their heads in the sand! my consultant requested my o2 levels were monitired during the test and there was no problem with it? the sensor was micropored to me finger so it couldnt fall off and it worked perfectly??

mine does this regularly and they have never pinpointed a cause other than pots so i will be interested to see what your cardiologist makes of it. I was adnmitted to hospital with shortness of breath. Everytime i walked around my sats dropped to the mid 70's for a short period and then would climb back up of its own accord. They did blood gases but annoyingly not whilst i was standing. They sent me for an exercise test (the treadmill one)and they abandoned half way through as my sats dropped. They didnt know the answer so just keep skipping over it or fobbing ot off to one of my other drs who doesnt know the answer eaither.x

Me to, well done, long may it continue.

i definitely need to tackle the food issues and will start keeping a diary and eliminating certain foods. Its so hard where the drs are concerned as its so difficult to get ones that are genuinely willing to help. When you finally find one who genuinely wants to help i think you end up going along with anything (within reason) just to try and keep them onside (does that make sense?)

meant to say that after the negative skin prick test he did ask if i would eat a piece of chestnut whilst i was there (i declined).x

i have to say i have always fought against being labelled anxious. He did say that the adenaline release becomes a vicious circle as the stress of illness and fear of relapse can worsen the adrenaline issues which in turn worsens the illness which worsens the stress (if that makes sense) apparently his treatment plan involves cbt and then after 6 months of that whatever symptoms are left are then tackled?? Ironically i ended up in a and e the evening of my appointment as i was itching all over (i had had this for a few days anyway) and the right side of my face became swollen (ironic or what) i had piriton and prednisalone which helped first off but the second dose of prednisalone made my throat swell so i havnt had anymore and ive been ill ever since with throat problems and itching. Im beginning to think im just a freak as even things im given to help me aremaking me ill.x

Well my appointment was very informative but im not really sure where to start!!! i had skin tests and didnt react to the chestnut but did to a couple of other things (house dust mite and timothy hay). I have had some blood tests to test for other specific allergies and to check for mast cell issues. I have food intolerances as well but he feels that the itching and throat issues i have been getting maybe a form of idiopathic angiodoema related to autoimmune/autonomic issues. He told me he thinks i have cfs/fibromyalgia and that if these were better controlled my autonomic symptoms would improve. He is reluctant to give me an epipen until the blood results are back (no good if its idiopathic anyway) as he feels i am releasing huge amounts of adrenaline innapropriately and doesnt want to add to this. He thinks cbt would be a good starting point to help with this and has apparently seen vast improvements with other patients like me and it has meant less medications and improved quality of life?? what do people make of this, has anyone had cbt and if so has it helped with the adrenaline issues??

i have a wheelchair but try only to use it if things are really bad. As thats the case i cant propel myself and would only be able to be out at all for a very short amount of time as my body craves the horizontal position!!

I agree. I wouldnt be able to wheel myself 2 blocks, it would probably cause me far more problems. I wouldnt advise a bike either as the last thing you need is to be taken ill while travelling at speed on 2 wheels. Are there any other mums locally that would be willing to walk your children whilst walking theirs to school?

I would discuss this with your dr as I think viagra is contraindicated in those with high blood pressure but it maybe there is an alternative? Unfortunately those with pots often seem sensitive to medications and react in unusual ways and often smaller doses of medications are needed initially to see what type of effect they have on us.x

thanks guys, its all so complicated but i can understand the pollen relation. Do you think it will just be blood and skin prick tests that they will do? Its minus 11 (minus 19 in some parts) here and we have 7 inches of snow and more due overnight so im hoping i can get to my appointment. The chap im seeing is a professor and apparently quite well renowned in the uk so hopefully im in good hands and he will have actually heard of pots!

mine can generally sit around the 100 mark even if im resting in bed. If things are going ok and im not moving about at all i can get it as low as 70 but most of the time it races away. Beta blockers have helped me but ive had to come off them while i have some allergies investigated (beta blockers increase your chances of having allergic reactions).x

I have my appointment with the immunologist tommorow and they have rung with a few questions for me but still havnt told me what they are planning to do but its making me more and more nervous each time they ring with another strange question or request. I have got to take cooked and uncooked chestnut (this was what 1st caused my throat to swell and i really hope they dont want me to eat it). They have now phoned me this morning to ask if i have had any problems with kiwi fruit or avocados??? does anyone know why they would have specifically asked me about those 2?? are they linked to chestnut in some way or another? or is it for completely different reasons? I wish they would have just told me over the phone what they are planning to do rather then leave me with my overactive imagination.x

thanks Dianne, i have been prescrined citalopram a number of times but am waiting til i see the allergy specialist in a couple of weeks to ask his advice as i seem to react to most medications that i take which puts me off talking them. What happens if you dont take with zantac or take a few days in a row?

beta blockers have definitely helped me with this. My o2 sats when walking around can drop to the low 80's and its useful to have the o2 sats finger monitor to see whats actually going on. We dont have lexapro in the uk, can anyone tell me what it is??

hopefully thats what it is then. im just trying to make a little list of things i need to mention. Chances are he has never heard of pots though and im not sure i know enough about the link between pots and mcad. Will just have to hope hes open minded and willing to learn.x