bluegirl

Hi thanks for your reply which is what i thought it was.

So one of my new consultants is wondering whether i have automonic neuropathy. have googled it but this potsie brain of mine doesnt seem to understand it. Can anyone please explain what it is, how it is different to POTS and how they test you for it? and what the treatment is? Thanks in advance

Hi all. thank you for your informative replies and for sharing your experiences. I cannot take beta blockers due to raynaulds as they are contraindicated. The verapamil is to treat the irregular heartbeats i get, together with ectoptic beats and was switchd a year ago following an electrophysiological study I had done by my cardiologist. i have been advised that if my systolic figure is higher than 160 i need to be careful with the midodrine as it could increase the bp higher but then the medics are now wondering whether i need a higher blood pressure to actually be upright. oh its all so complicated. Unfortunately at the clinic in Dec my bp was 198/111 which is why they are concerned! I would be interested to hear the updates whilst you are progressing with this medication. in the meantime im awaiting a 24hr blood pressure monitor from my neurologist to see what my bp is doing. Even though i do get the high blood pressure, I still get postural drops with my bp in addition to a hr increase of over 40-50 bpm and thats me being medicated. Thanks again for taking the time to read and post and please post any further comments you have here.

Hi Does anyone have any experiences with taking a medication called Clonidine for PoTS please? My consultant is considering putting me on it as I appear to be developing high blood pressure whilst taking midodrine. I also take Ivabradine, fludrocotisone, and verapamil and numerous other meds for my autoimmune conditions. Thanks in advance

Thanks for that, I knew I had read it somehwere.

Yes I am pacemaker dependant but it was fitted years before I had the ablation as I had complete heart block.

Hi My cardiologist secretary phoned me yesterday to say I need an upgrade of my pacemaker which I have had for some years now due originally to complete heart block and more recently I had an av node ablation because I had Superventricular tachycardia. I also have a number of other life limiting chronic illnesses which all impact greatly on my life, but somehow I do seem to muddle through it all and most of the time I stay positive. My question is - I am sure that when I was with my POTS consultant in May last year that he said if I ever had any medical procedures that I should be placed on a drip to prevent dehydration and wonder if in your opinion that is correct? I am on Ivabradine, Fludrocortisone, Diltiazem, Prednisilone and other meds for my various conditions. My POTS consultant was the one that discussed with my cardiologist the upgrade of my pacemaker so I wondered whether I should be letting him know that I am going to have this upgrade imminently? Also I have been referred to see a specialist in joint hypermobility syndrome and wondered what people's experiences of having this were please? I am due to see the consultant in 3 weeks time. Both these medical things arose only yesterday afternoon so I my mind is in a bit of a whirl to say the least so if I haven't got across my questions clearly then let me know and I will try and rephrase them. I also can't seem to change the heading from the pacemaker thin to a general one. Thanks for your time ...

Hi, has anyone heard of a clinic where you can go in the UK, if you are referred by 2 doctors (which I can get!!! no probs!) to be weaned off medication such as morphine, gabapentine and 18 other drugs I am currently taking. My mum had rung me today and said she has heard of a clinic that can do this and give you help thru it all, as an inpatient, but doesnt know where it is in the UK. Has anyone in the world ever heard of such a clinic because my family wants me referred to that clinic because of all my symptoms and conditions which appear to be caused by POTS and also side effects, as many of you have advised me (as I and my family agree) over the past weeks. My mum has said that it is difficult to get a NHS referral, but if I can find 2 doctors which I can easily out of the 8 I see!! they can get me admitted to this clinic on the NHS and I dont have to pay for it as it costs loads of money. If ANYONE has heard of such a thing, be it here or in anywhere else in the world, or has any advice, view, comments, please please can you help me. I am only 41, my life is passing me by; I want to just be able to pick my daughter up and cuddle her, but I cant because of the pain I am in - she has become my carer and its not fair. I do have a supportive husband but he has to earn the money for our living so during the day I have no one here at all. I am an only child, tho my parents are great, my friends now seem to be taking their distance. The friends I have left all wonder in awe how I cope and dont give in to my illnesses and everyone is so surprised and proud that I study Egyptology at Uni level and have just passed my 1st years degree in Egyptology with distinction, even in my condition. My tutur says I write better essays after a "good anastethetic (sorry cant spell, brain gone awal!). I feel to wretched, my skin hurts like Ive got the flu, I cant think straight; I feel sick and keep falling over and I generally feel yukky! Since I was discharged from hospital on Friday, my right arm has felt heavy and dull and I toldthem in the hospital and they werent interested, neither is my GP. The Dr also says I am low in iron stores, but hasnt put me on any iron supplement. Does anyone thin it would be a good idea to go on a good supplement, and if so, can anyone recomend one please? Can anyone offer me any advice; my drs are all over the place and never communicate with each other, it seems to be different in other parts of the world. Please help me if you can. I know that things will get better, but I just need the "light" at the end of the tunnel to becomea little clearer, if you know what I mean. Best wishes to you all Julia

Hi again to you all and thanks for your replies to my message. The reason I had a pacemaker in 2002 is because I had a 5 second ventricular standstill - that means my heart actually stopped beating and I might have died if it didnt restart!! SCARY!! I have just been discharged from hospital after having spent 10 days in there when it was only a "day appointment"!! They left me sitting in a wheel chair for over 5 hrs and then wanted to do a lumber puncture but they couldnt get me out of the wheelchair as I had seized up!! I have had the lp and CT mylogramand loads of blood tests and am now awaiting all the results. The neuro bods have now referred me back to my neurosurgeon with a view to possibly fusing my back. Since being home I have been alone today for the first time, since coming out of hospital, and have already fallen over and had to crawl up the curniture to get up! The have increased 2 of my drugs by trebelling them overnight and my body is so confused. They say that I have to take these high doses (gabapentin/neurotonin) if I am to have surgery as it will help with the pain, but now my right arm feels like it doesnt belong to me. I am scared and frustrated but glad to know that I have this forum to rant and rave!! Has anyone else gone thru the mill like me; gone from consultant to consultant and given more and more drugs to take? Im sure its their mixing with each other (if you know what I mean)???? Anyway, I just wanted you all to know that I am back home now and let Hayley know why I had a pacemaker implanted. Just as a matter of interest, 2 of the drugs I have been on have recently been withdrawn and I took these prior to my pacemaker being implanted and these withdrawn drugs are responsible for heart attacks/strokes and other problems. Does anyone know what Im talking about??! I want to go and see Prof Mathias again, but the last time I saw him he said he was concrned about seeing me because it was a long way for me to travel (even tho my husband takes the day off from work and drives me to London) and that we should deal with things by post. Do you think it is worth my cntacting him again to be reassessed since I was diagnosed by the tilt table with POTS in 2002. Anyway, best wishes to you all and thanks for your replis Julia

Hi Hayley Nice to "meet" u! Who diagnosed you? Do you have POTS and how does it affect you in everyday life. J http://dinet.ipbhost.com/public/style_emoticons/#EMO_DIR#/biggrin.gif

Hi Susan thanks for your messsage; its nice to know Im not alone. I dont know how many people there are here in the UK and where are you all writing from, it would be nice to know. Mighty Mouse What is Ehlers-Danlos III - you say it is a connective tissue disease; have was it diagnosed and are you living in the UK? To all of you who have replied THANK YOU its so nice to know Im not alone http://dinet.ipbhost.com/public/style_emoticons/#EMO_DIR#/biggrin.gif I wish you all the best and will keep in touch via the forum. J

Hi Katherine & Mighty Mouse (how did you get that picture on the side of this feature please) Wow, I didnt expect to have someone reply so quickly!! THANK YOU. Yes, I was diagnosed by Prof Mathias in 2002, just 3 months after I had a pacemaker put in. He is THE dr in the UK, although I havent seen him for the past 2 years as I have such a bad back problem that getting up to London to see him, he thought was bad for me, so I have been put on the back burner so to speak. On Wed, I am going in for a lumbar puncture, another CT mylogram on my lumbar spine, various neuro tests, conductive nerve tests and another other tests they think appropriate. The trouble is, they dont talk to each other, even tho I have 3 in the same hospital!! You are So right!! my family and my husband all agree that with all the medication I am taking, their interaction could be causing havoc, but nobody seems to want to take responsibility for my body aas a whole person; each Dr just looks at the part that has gone wrong. However, the Dr I saw, who I am being admitted under, his Registrar who I saw in December has worked with and in the fields of medicine that I am affected by so I am SO hopeful that something good will come of this. Anyway, thanks for replying, it was very kind Best wishes to you J

Its very interesting reading through all of this, I went to see a dietician last week and was diagnosed as hypoglyceamic (cant spell it) and have to eat high fibre snack/cereal bars between meals; does this problem o hand in hand with POTS? Any assistance gratefully received please!

Hi, I am new to this sort of thing, but I need to know that there are other people out there who feel the same as I do. I was diagnosed with POTS 3 years ago and have now become virtually bedridden; Im only 41 and have a daughter (10) and I have had major surgery on one part or other of my body for the past 4 years; it seems as if my body is giving up. I am going into Hospital on Wednesday and am VERY frightened as the last time I was in there 2 years ago no-one knew about or had even heard of POTS!! I had to refer them to the web!! It seems that I see someone new and they put me on another drug for this or that and I am now on 21 different drugs and am sick and tired of taking them all. The morhpine makes me feel sick; other tablets have made me gain over 3 stone and with a lumbar spine that is needs fusing that's not a good thing. Has anyone else been diagnosed with POTS and then go on to become chronically ill at all? So far, I have also been labelled with ME, CFS, Fibromyalgia, positive ANA tests, high ESR and CRP, probable connective tissue disease, rhumatological problems (I have to have high does steroid injections for this and need to have bone scans, but now have developed neuro problems that need investigating, hence my admission this Wednesday) and had my thyroid removed in July; have a pacemaker lumbar spine all protruding and I could go on and on. I have got osteapeania because of the steriods but fortunately taking high doses of calcichew D3 has made my bones a little better and the test results last time were better! The reason for going to hospital is now I cant walk in a straight line, I veer off to the right and even fall over or lose my balance; I mix all my words up sometimes; my head feels fuzzy in certain parts, my vision is blurred, and I generally feel weak all over. I would be so glad to hear from anyone who has been diagnosed with POTS and whether they have developed any other conditions following their diangosis. If anyone thinks I have just gone on and on about my problems, Im sorry, but I need to know if Im the only person who feels like this and I also need to know that there are other people out there who can identify with me. I feel so ill so please forgive any rudeness in this posting because the high doses of morphine make me confused. Please can anyone just reply to me, even if its to say hi. With best wishes to you all and thanks J