Griffin

I have tachycardia and hypotension. I saw my heart consultant last week and he decided to put me on Fludrocortison to raise my BP (and keep the salt in my body) and Ivabradine (Procoralan) to lower my heart rate. I was over the moon at having a strategy at last. Today I received the letter from him in which he said he was putting me on the Ivabradine (Procoralan) to lower my heart rate but NOT the fludrocortisone as he had reservations about it. I was kind of devestated to read this as I thought it was all agreed and felt at a loss as to why he hadn't discussed this change of mind with me. I don't really understand the mechanics of it all. My immediate thought was since he describes the raised heart rate as compensatory for the low blood pressure wouldn't lowering the compensatory raised heart rate make my blood pressure even lower? I've had a lovely PM from someone who reassured me, but wonder what experiences anyone else might have had and if anyone can help with my confusion.

I am wondering if anyone knows of a POTS specialist anywhere I can get to. I am well placed in West London just north of the river. I can get to central London, South West and South central London, West and North West London. I could also get to anywhere in the Home counties. I have a heart specialist who specialises in hypertension (but I have hypotension) and he is being reasonably helpful with the tachycarida but he doesn't seem to know about POTS or some of the drugs mentioned on this board. I'd like to get a second opinion from someone who knows a bit more about it all.

I had a gastroscopy which showed I have a "nutcracker oesophogus". This is a condition where the oesophogus goes into spasms which causes problems swallowing. My mother has this too which I only found out after diagnosis. Nothing to do with POTS. Always best to ask a doctor !!

Reclining is my best position. I need all parts of my body supported so I don't use up the little energy I have. I can sit in a chair with really good support (slouchy armchairs are best) but usually get delayed exhaustion from it. Oddly, my car seats are brilliant, really good design for my needs, and I just hope my car keeps going for many years as I don't want to lose the seats ! Also have the can't bear standing still trouble.

My consultant is going to start me on fludrocortisone soon plus some other drug which I don't know the name of at present and it's been helpful reading all your comments. I asked him about midodrine and he had never heard of it, looked it up in his "book" and it wasn't there. Is it off label?

I'm London UK too. I take 2 slow sodium 2 x daily. Use a Casio watch which can programme several alarms. Casio LW-24HB-2AVHEF. You can get even more alarms by also using the hourly alarm. Vey useful. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ On a diferent note as I can't seem to start topics at present. My heart specialist, says next step to try fludrocortisone and that on no account must I have beta blockers. a) Why not beta blockers. -would beta blockers lower heart rate but leave it still trying to raise blood pressre by 0 fighting the beta blockers - I read somewhere that people felt better on beta blockers. than on fludrocotisone . more normal, more energy . Any info on that?

Hi Brianala I get where you are coming from on diagnosis not making a whole lot of difference - provided whatever is going on is recognised etc. One of the reasons I feel strongly about it is the lack of understanding I get from all around me regarding my illness. For example, I am constantly told by well-meaning friends I should get some exercise and that will sort me out, my family think I am just being lazy or something, and I get very fed up with it.... sometimes when I am really low I start believing they are right. Since I have been told now since the diagnosis that going to the gym is a big no no etc I feel it would be helpful to my social and family environment of there were a label (ie diagnosis) that would mean something to them. Until all this is recognised and understood in the UK generally, many of us will continue to have pressure put on us which is inappropriate and often downright dangerous. Hi Willows I am glad you have a good understanding GP. I empathise with the researching it yourself and all of that ending up knowing more about it than most doctors. Again, as I said to Brianala, until it all becomes more mainstream medicine our problems getting properly diagnosed, and therefore properly treated, will, in general continue. Of course, this is nothing new. I always look back on the history of Multiple Sclerosis, which took years to become a proper and properly understood diagnosis, as an example of how hard it is to get things recognised.

Hi Steph I am newly diagnosed too. I've been told to take 2400 mg sodium daily and to come back in three months, doing self monitoring of pulse and BP over that period. The reason given to me for the long gap in appointments was that it takes a long time for the salt to permeate all the cells in ones body. My consultant also said he expected it could take two years to get everything right enough for me to be active again. So, disappointing news, as I thought salt might be "magic" but good to have a diagnosis at last and a doctor who is on my case.

With me the anger is more a kind of frustation and despondence it comes and goes with varying shades of disability. I have several different chronic illnesses, as it seems so do many others of you, so what often triggers a bout of frustration is a feeling of illness overload in terms of having to deal with day to day living and hospitals and doctors. I am in a major round of changing meds, with the usual side effects making it all but impossble, and that frustrates me. What usually happens is I will suddenly emerge from the frustration and despondense into acceptance, but I have no idea what really triggers the change as it is not as striaghtforward as just feeling better physically. Personally I think these feelings are normal. Or at least, not abnormal. It's only when they are extreme, or get in the way of living, that I think they matter. I like others, find that focusing on "can do" or " will do somehow" rather than "can't do" helps a lot. But I find it harder when feeling depressed. Or do I find I get depressed when the "can't do" gets overwhelming? I am not sure. It fluctuates and I think that is normal too.

Thanks Cath. Very informative. And clear. It would be good if NICE got something right ! I found the doctor who finally diagnosed my Tachycardia and Hypotension via a referral from another doctor in a different specialty who chose him as he specialised in Tachycardia and Hypertension...... I think the theory was if he specialised in hyper he must know lots about hypo too...... luckily he did. He seems very thorough and has been really good.... it is such a relief. On a more general note, linked to causes for missing diagnoses, I think another reason is doctors are so pleased wih low blood pressure, because high is so bad, they don't really listen, or perhaps just don't take it seriously, when one relates how it is affecting one so badly. With my Tachycardia they all seemed to think it was a one off when they found it..... it was only me who added up the times it was found and thought hey! is this constant rather than episodic? and then had to push for a doctor who would listen to me.

I have just been diagnosed with hypotension and tachycardia. Although they are not new problems it has taken blood sweat and tears, constant dedication to pursuing doctors, and years, to get them diagnosed. I have had so many doctors dismiss the symptoms with stuff like "you are anxious", "get support stockings", and so many just not making the link between the two and it's really only been me that has kept a history of how often a doctor has found my heart racing and dismissed it, and how often I've almost passed out with people wanting to call ambulances etc etc. I also recently had a cardiologist tell me to go away and get fit which is quite alarming given I've now been told, since a different cardiologist has done the appropriate tests, that whatever I do, do not go near a gym !! I'm sure many of you recognise this only too well. I have one question regarding salt. I've been put on 1200mg slow release sodium tablets twice a day and told to come back in three months - the reason given being it takes salt a long time to permeate all the cells and also the doctor is concerned not to miss anything else along the way by treating too aggressively at first. This sounds sensible to me although I am disappointed it will take so long. Is this fairly usual ? My other issue is I haven't actually been formally diagnosed with POTS or Dysautonomia - just Hypotension and Tachycardia. Describing these to others (non-medics) I've been told it is POTS and also I noticed in David Bell's article "The Relationship Between Neurally Mediated Hypotension and CFS" (I have CFS and I am auto-immune +ve with Sjorgen's Syndrome too) that POTS fits both my symtpoms and the doctor's findings - being number five on Bell's list of definitions (and I think at least one other of his to do with the diastolic). Article @ http://www.pediatricnetwork.org/medical/CF...ary/nmh-cfs.htm. Is it a silly question to ask why the UK seems not to recognise these health issues, doesn't make the connections unless the patient pushes for it, and finally doesn't actually diagnose it as POTS or Dysautonomia?

I've finally been diagnosed in my late fifties with hypotension and tachycardia. I've had hypotension all my life and at a guess tachycardia for much of my later life. I also have a diagnosis of Chronic Fatigue Syndrome and have noticed there tends to appear to be more young than old people with that. Personally I think older people don't get these diagnoses for several reasons: 1. they are old so it doesn't seem to matter so much (to the doctors!), 2. the conditions get missed with other diagnoses hiding them, 3. older people expect to feel some level of deteriorating "wellness" so don't complain... etc I'm sure there are more.

I gained weight due to having to rest all the time which I always attributed to my Chronic Fatigue Syndrome. I have probably had hypotension & tachycardia all the time as well which is in itself either causal or result of CFS.... so who knows which it is really attributable to !!