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I think you sound a very "normal" patient to me for on here I dont know that much about BB's, but maybe some have more of a longer half life than others. So might be worth asking your Dr now you know your not allergic to them if you like, if there is one that stays in your system for longer, so it will see you through til the morning. Anther drug that doesnt get mentioned much on here that my Dr asked if i wanted to try it as they tend to not cause so many bad reactions is this one i have put a link to. Just worth keeping on a list sometimes!! http://en.wikipedia.org/wiki/Moxonidine

I forgot to mention, 5 years ago when my POTS became life changing in the sense i could no longer igonore something was wrong, a whole load of bad things happened to me just before this time which Drs always ask in consultations when they want to put everything down to stress. Some where relationship changes, being on a boat for 24hours which seemed to make me never able to cope with motion in quite the same way, and as well as chronic heartburn and nausea i was taken down with Giardia whilst visiting Egypt. I was very ill for weeks and wasnt given antiobiotics straight away as we all just though it was food poisening. Although i tested negative for Giardia months later, who knows with these parasites "hiding" themselves. It makes you wonder even if the Giardia was simply enough to cause havic with in the body like Lymes etc. Giardia is something worth being tested for if you get a lot of nausea and abdominal problems, you dont have to have the trotts to have Giardia either

I said in a post back a way dont feel pressured into getting the dose up high. It puts stress and strain on you mentally and physically if you do this. How about if you try taking a higher dose each time at night before bed, and not really taking in the day time for a while, could you do this just at night time regime until your body get adjust to the BB, then in maybe 2 weeks or so or however long it takes you as an individual, start to introduce in the day? My Dr suggested this to me with SSRI's.

I was going to say the same thing, i dont do well on new drugs, i take the smallest amount, and if you feel its too much in your system too soon, my Dr suggested to me to miss a day then continue. Sometimes you almost feel a sense of pressure that once you start a new drug you have to keep going. But just take it slow so that any reaction you could have will be minimal.

Anna; Thats really interesting as i have heard of children with dyslexia found an improvement with the same type pf coloured glasses. There are also green tinted glasses i have seen on the internet that are suppose filter certain spectrums of light out to help migraine. Because there seems to be this pattern with oversensitivity with EDS/POTS/Epilepsy/ADHD ect ect it makes you wonder that these transmitters in the brain, like your article get so mixed up confused. Wouldnt it be wonderful if it was just a case of wearing coloured contacts to help with all these similar types of conditions in the future

I am exaclty the same, from around the age of 12 can remember getting out of a lift, and feeling like the floor and your legs were made of rubber. I am pressuming its lack of oxygen to the brain against the extra problem of gravity the lift is causing.

I have read about Pelvic congestion syndrome a lot recently where i have been looking into possible problems with veins and arteries. Might be worth taking a look at.

Hi RamaI don't disagree with a lot of your comments on the fores and against's with issues such as MCAD the being the route cause of POTs rather then a cormorbid condition, how relevant is CCSVI in POTs with the evidence that is out there at present too, but i suppose the point i was making is sort of like Issie atleast Driscoll and her team of Dr's are looking into this, and there are not just one or two people getting mild relief from all of her advice to do with mast cell, cfs drainage, inflamatory cytokines and even early infant stages of research into nerve decompression surgery. If things are stagnant who knows how long many of us will be struggling for. You need brave people to volunteer for these medications and risks surgeries else how do we ever perfect it? Heart surgery was far more risky when it first came about, but becuase they have the numbers to refine the skilss and more money looking into wys to perfect techniques even more, other conditions have a big advantage over us lot on here. No matter what new surgery comes around or surgery in general there will always be cases where poepl do sadly suffer complications, as awful as it is does this mean we just drop it? In my opinion no, obviously if every CCSVI surgery was resulting in death then its a big no no, but i am just basing my opinion on Forums where a lot of MS patients have found improvemnts, placebo effect, maybe??? But is that insulting to them?? I am sure they would think so. I just salute anyoe who dares to go against the majority of advice, even down to taking anti biotics daily for Lupus when others opinion are its not good. It takes bravery to try anything with unknown risk. But if you are at a point in your life you feel you dont have much to loose by trying i can understand that. I can also see how the vulnerable may be sucked into a theory that is a money making scheme, but i dont believe any of what we are talking about on here is that ype of thing. I saw my cardio yesterday who felt that carotid arteries may well cause blood follow issues, but no way did i have that and his words, he would "eat his hat" is there was evidence of CCSVI as he did not believe veins were designed in such a way that they could, clog, bend or kink. Fair enough, but if Drs are not prepared to even look, even to humor the patient how do we ever take that step forward to be able to answer your question like "what evidence is there of ccsvi in POTS?" I think the same goes with the protozoa, as far fetched as some may believe it is the "real MD's" as some would call them laugh every new suggestion off, we are then relying on a very select few fighting to get us better, and surely its better to have more options out there to us? One thing i do strongly disagree with you on though and i think it is a slight injustice to call Dr Driscoll just a "patient" and not a researcher. She is Optometrist which is were a lot of her findings with abnormal blood vessels in the back of the eye started the ball rolling with how EDS/POTS and the blood flow issues really began. I think with the amount of evidence she has collected, whether its right or wrong along side the people she has helped, books that have been published, research that has been published and medical conventions she has spoken at, to say she is just a patient is not fair. She does have Dr's on board with her findings. so does it matter if she herself doenst have a medical degree from Harvard or Yale. She is by no means an idiot and i think adds that personal caring touch that so many Drs lack and thats what is enough to just give people hope at times. IAnyone who losses their lie to pots and is bedridden for years( as to were her small kids, and Drs couldnt help at the time, i think there is not greater incentive to look for a cure than seeing your children missing schooling and missing out on their childhood. For example, i would say out of all of us on here, you would be the biggest rearcher going, you seem to retain facts and figures and have a wealth of knowledge of so many things, that quite honestly confuses the **** out of most of us, but as far as i am aware you do not have letters after your name? But yet you yourself can make a very valid input and i bet you diagnose and categories a lot of us on here better than our so called pots experts!! The trouble with these experts is that that yes of course they play such a vital role in moving things forward BUT pots does not effect their life 24/7, they see patients upset for an hour in front of them for A consultation, or they see the next person coming in to clinic in a wheel chair, but they do not have the faintest idea what this is like to live with day in day out, its seems strange how the more radical ideas of say Paul Zamboni in regards to CCSVI was discovered as a result of his wife having MS, Driscolls entire family suffered with POTS and EDS, so maybe the pattern here is that real people who's personal daily battle leads to more bravery and to take bigger risks and be prepared to take criticism for surgical procedures that are not 100% certain, but as its such a personal battle maybe they prioritize differently to those who research at the Mayo and the like. What i find quite sad is that recently a post was made on here how i think it was the Mayo, they have found anti bodies in pots people that directly attack the heart, i think it was Jangle who posted this, then quite a few tried to follow this finding up and ask "so what happens next?" the response was that these scientists do not see patients and that there was no further plans to investigate this any further!!! Is it any wonder why many of us then try more unconventional methods? I asked my cardio when do you think cytokine biomarkers will be here in the UK to test people, and he had no idea when that could be...... You did make me think about one thing with the Driscoll theory #well lots actually# but one that i wonder if anyone on here knows the answer too. Driscoll states how important it is to take sodium bicarb daily with diamox to keep the Alkalinity in the body, else the Diamox fails to drain the CFS fluid correctly, ok but why then with High intracranial pressure headaches, is Diamox given to again help the drainage of the cfs fluid and there is no mention or necissty to do this?? My cardio did say worrying to me yesterday that no matter how much magnesium you supplement, taking Sodium Bicarb at that amount daily would ruin your kidneys....... Does anyone understand that???? I guess my whole point to this thread is no matter what alternative ideas we post on here, there are always going to be fores and against, and i think its down to how that individual feels about the quality of their own lives if they want to take these risks to try alternative drugs, surgery or lifestyles and diet..... What does annoy me is if a Dr would not even give you that right because its not printed in the British medical Journal, but i guess thats how the medical world works. Oh yes Rama there was one question in regards to the beta 1 receptor super sensitivity in EDS patients, what could possibly be if there are any, possible treatments to discuss with your Dr to help that issue?? I know you are going to baffle me with science now.....

I would like to chip in here and say from an EDS and POTS sufferer, I did not have drastically high NE levels yet having a very fast resting heart rate and other symptoms would suggest hyper pots. I could agree in that high NE levels could be another compensatory mechanism, perhaps this is why beta blockers and in my case clonidine caused such fatigue, obviously blocking the over response of NE when we do stand up. Drs were surprised I felt so tired and worse on clonidine when I complained of tremors and signs of over active response to normal daily stimuli. If you look into Dr Driscolls research at present, she is looking at co-morbid conditions like MS in EDS, where of course CCSVI has been a topic of conversation for MS patients since Paul Zamboni's Angioplasty began as well as Dr Michael Flanagan, who has been looking at these types of problems with the neck and spine for over 25 years. Driscoll has proven that many people with MS develop EDS or vice versa, of course POTS comes into play in this melting pot (excuse the pun)! The theory is that poor venous drainage and CFS from the brain Is a result of CCSVI in EDS POTS people, causes a cascade of problems, ultimately leading to too much pressure on the vagus nerve causing dysautonomia. I know Driscoll herself who has EDS and POTs as does her son, both had CCSVI, many others are now being scanned for it including myself and the numbers are flooding in according to her. She is at present conducting more research into this phenomena and I personally have a feeling that many may find their route cause of the pots by doing this. It's just another avenue and one that makes sense as we all know oxygen perfusion and drainage plays a major part in our problems, particularly with weak blood vessels and veins due to the connective tissue. You just have to see how many of us have headaches to know they are looking in the right area, and with the vagus nerve controlling so many of out autonomic functions I believe there is truth in her claims and yes she does have evidence of POTS people having CCSVI, it's just not common knowledge in our community unless you have read Dr Driscollls research papers. She also has evidence of LOTS of POTS with EDS people suffering from MCAD, it's all part of the inflammation and deterioration of individuals who suffer for years with POTS. I felt I had to mention Dr Driscoll again on here because I have suffered for about a year with chronic "vertigo migraine" and been in agony daily, since reading that I am actually suffering from ex communicating hypothalamus , which has been proven by starting diamox, I have had the best almost pain free week in an entire year, so I am grateful to her research extremely. So I wanted to give her a plug.......sorry........

I was on Metoclopramide for a while, i found it made my tummy churn and pop and made it very sore and painful. It was like it contracting too much which of course is what it does and it makes your tummy and intestines empty and digest fod quicker. I felt Domperidone to be easier on the stomach personally. I wonder if the metoclopramide could be speeding up your metabolism and thats another reason why you are losing weight? Just a idea?

Hi Foggy I started this post not long ago about feeling worse with a lower heart rate but having a high resting heart rate still, here is what some thought................. http://forums.dinet.org/index.php?/topic/22035-pvcs-chest-pain-everytime-you-try-to-lower-heartanyone/

I like that breakdown! Especially noy being able to waste spoons! I have done way too much of that on people!

I havnt had that pleasure of coming off of an SSRI yet, but i think you are very brave to be seeing it through how you are. I agree if you feel it is just too much, or you cant keep fluids down, thats what ER is for. I think many of us think its a hassle going down there as we have to explain so much as to whats going on with our bodies. Only once have i had a Dr in ER know what pots is, but that what they are there for! So dont hesitate to get down there if it gets really bad for you, maybe peace of mind just being monitored there will relax you.

Ahhh Jangle Thanks for filling in the blanks, i meant to say civil war! Can have around all the time..xx

i was told that POTs was first picked up on after the first world war, when men came back demonstrating strange HR and BP patterns. It was given a name back then which i forget now, but it wasnt pots. Must have been the trauma and chemical exposure back then.

Issie that sound really interesting I dont know if you can put links to direct Dr's but i have found what would be needed to have scans for veins and valves etc, in the UK Its called an Itnterventional Radiologist if people want to google it, to investigate this avenue. I meant to ask on here, i dont know if this effects anyone or if it could have anything to do with my Dysautomomia, but i have a pronounced abdominal aorto. If i press on it, it beats extremely hard and hurts to even apply the slightest bit of pressure, could there be a valve problem there or congetion do you thinks its worth mentioning?

Thanks everyone I already half expect that if i do have an echo, chances are it will be ok as the pvc's only happens when my heart is slowed down. It can go high as a kite and feel horrible, but it doesnt beat irregular. My worry is that it is not just blood pooling in the lower extremities, and veins, artories, valves are more to blame. Seattle; it was the same for me, the most intense and painful reaction i had was from a BB. Now i simply think it was because it slowed my heart lower than any other drug. Well that and mast cell issues no doubt. The only med that has helped to reduce heart rate when i was first dx was Midodrine and yes i am on it and its ok for me. Canadian girl; When these PVC's happen, my BP can be perfect and doesnt tend to be low at all when it happens. It is so frustraing though because i cant even get to grips with mast cell H1 AND H2's because they slow my heart too!! Thanks for explaining in simple terms how this allows time for the extra beat to happen. Do you mind me asking are you on any meds? I know you joke about having 10 angiograms, but i am going to push to have a specialist radiologist take a look at the neck are and i have read even the pelvis can have major artories that can be blocked. Can we try and demand that we have like an entire CT body imaging done, but one that consists or Dopplers, fMRI's to check the neck, torso and legs. The legs was not even an area i thought of for faulty valves.

He maybe a med student and knows a lot about biology, but i can tell you now he will make a lousy Dr! He clearly has no compassion or warmth, or if he had, he has lost that from when you first met him thats for sure. What a disgusting thing to say to someone a week before heart surgery. I am really sorry you have been hurt by someone like this. But do not let it get the better of you. Focus on next week and your recovery, thats all that matters. He isnt worth it, try and forget him and like others say surround yourself with people who care more and understand.

This is a similar sort of post to k&ajsmom, in the sense that its about brady,but in my case its only very slight lowering of the heart. I have come to realise over the last 6 months or so that any type of drug all be it CCB, BB'S, Mestinon, SSRI's anything that even starts to begin to lower my heart rate (which i need as it runs around 100 resting) i begin to get pvc's. Even if i slowly increase a drug dosage, as soon as it gets into my system and begins to do what i want it to and gradually gets my heart rate to around late 80's or earlly 90's the chest pain is bad. There is no way i can up the dosage on any of them, when i did try to push through on one particular type drug i almost fainted. I cant understand why i cant seem to get my body to adjust to lowering the heart. It has got me thinking and i wonder if this has happened to anyone else on here and did you find out why? Obviously when you begin to slow the hearts down, the brain starts to receive less oxygenated blood that it requires, so is the venous return impacted enough by a small drop in HR to set off PVC's and chest pain. I had a relaxion massage a few months ago and it must have been so good because my HR dropped below what it normally runs at and off went the PVC's, and thats nothing to do with medication! The only way i can lower my heart rate without pvcs is on oxygen. If this was nuerally mediated chest pain, surely eventually this would ease over time? Mine hasnt, and it means that so many drugs i try, i have to stop, no choice. I am seeing my cardio soon and although i had ECG done only a few months ago and all was fine, things are not at the moment. My stress test and 24 heart monitor where normal last year too. Could this be MVP? Left ventrical dysfunction? Or as i am sure many of you on here have been reading, COULD this be due to a blockage of a sort in the neck arteries or faulty valves. Many have spoken about CCSVI, Dr Driscoll speaks about its coalition with EDS/POTs people. Would it make sense that if you had this type of problem all be it a blockage or faulty valve, when you begin to decrease the cardiac output, you are cutting off even more oxygen to the brain and this what makes me almost faint if my HR begins to drop into the early 80's??? Do we have to except everthing is just POTs and just nuerally mediated and no further investigations happens????

It took me around 2 weeks, but again we are all different. I can remember being so dizzy when getting out the hospital bed when i needed to.

I find that funny that when it comes to asking these dr's for tests we think we need to help out POTs and other undiagnosed conditions, its such a battle to get them to do anything from a simple blood test. Yet you can insist you already have something and DONT need a test, yet all they want to do is spend money and time on ones that you dont in theory need!!! :angry:

I am sorry too that you had such a rubbish appointment. You sit there, and listen to it and then come out of the consultation furious! I think the best you can do is carry out your research on the Dr as much as possible, and try to come away and think if this happens next time this is what i shall say. Have a list or print outs infront of you so you dont get flustered by the Dr's stupidity!! I had a total wasted trip to a geneticist the other week, she was not interested in taking blood or saliva for anything. Basically said in her follow up letter, it wasnt her area to all the questions i asked. Just try move on and on to the next who will be able to help.

Have you mentioned to Prof Mathias about Octreotide yet?

I am exactly the same when i lay on my left hand side! I too wish i could answer why, i think its pressure on the heart as you are laying on that side for sure but other than that i am not sure.

And that makes me laugh too Naomi, they dont seem to understand when you say i am super sensitive i dont want to go on something that is not right for me, i would like a 50/50 chance anyway!Its a bit like they just want you to throw wet tissue paper at the ceiling, keep doing it surely some will stick, never mind the mess you make!