Question: For Those Who Have Had Pots A Longtime.

[willows]

Now here's a question I'm interested in knowing the answers to .

I've had POTS since I was about 13 years old , now in my 50's I've been tested 3 times :

1: When I was about 18 years old in London I had a TTT, but they didnt know what I had then just strange happenings on the machines.

2: In 2002 in Plymouth by a Doctor Battle , who after hearing all my strange happenings asked if he could test me TTT , when he came back into the ward afterwards you'd have thought he'd won the lotto !!! as he was almost dancing about with joy waving his paperwork around shouting ' I've cracked it , I've cracked it ......you've got pots , your TTT was positive' which given the fact I was so ill at the time must have been interesting .

3: Then I was seen in London again but having spent 3 days laying flat out with nothing to do I was then taken and given a TTT, and nothing happened I wasn't given the stuff Mike was given to make my heart beat slow down .............and (this is where I get cross) at the time I was on the highest does of Clonidine I've ever had to take for the sweats , yet the doctor placed an arm patch on me with pink sweat detector in it saying that if the TTT showed nothing my reaction to it will show up on the sweat test ..................ER excuse me Clonidine ?????? so I didnt sweat either ( this TTT lasted all of 25minutes)

Having taken me back to my bed to await another test ( a scan this time ) within about 30 mins I was having an attack ............head pain , flu pain all over , dizzyness , vomitting all over everyone ..........including visitors for other patients in the ward who came to my aid as the nursing staff ignored me completly to the point that they wouldnt even give me my own drugs that I needed to help the attack

When the porter came to take me for a scan I sicked on him ...........all the way to the scan room on the floor ..............in the reception of the scanner and then all the way back to my bed as the staff thought it was some sort of a joke so send me in such a state!

So now here I am back at another new consultant and guess what ?

He wants me to have yet another TTT and every single test like all bloods , scans, those painful nerve test etc again

And I feel that after over almost 40 years of constant testsing for this , that and the other I've just about had enough of the pain and all the side effects that these tests bring with them .

If this consulatnt cant except the letter from one doctor to another ( Doctor Battle ) and all his findings ,then why are we all sent to different consultants for testing in the first place ????

This new consultant seems to think that just because I've had a TTT test that has shown nothing ,I now dont have POTS ................ yet after reading all my parework on my medical problems he cleary stated to me that I do have pots

May be its me who's being thick beacuse if he is saying I have POTS, but then ordering all the tests to show I have POTS doesnt make sense to me , why I am now being asked to go through all the tests again ...................Tell me ,do you have to have all the tests done again if you change consultants each and everytime ?????

I dont know about you but I find that even if having a blood test doesnt give me probelms 'at the time' probably because I must have had in the region of 1000 or more by now , but give me a couple of hours and I'm suffering with flu syptoms , tired , giddy on my feet etc.

Having yet another TTT test makes me worried as I will have to travel a good 2 hours to get to the hospital and then 2 hours back , if Mikes test is anything to go on ...............OMG he was so ill and just so awful afterwards .

And finally , wait for this little gem the new consulatnt said .............he asked if anyone in my family had POTS , to which I replied 'yes, my son Mike ' .................'No 'he said' someone else , like mother or father as its passed down from them '

So my question to him was , if POTS is passed down from mother or father to child and we know Mike has it and I've already been tested once with full Autonomic Nreve Dysfuncation ............why ...oh ....why are you putting me through this **** and back again , when you know I have it becuase I've passed it on to Mike '???????

Quess what ?????...............he ignored me

Mike on meeting this consultant for the first time took an instant dislike to him and I had to talk him round to going back ( this wednesday ) saying it may be just because he doesnt know how to talk to teenagers.

But now it appears he doesnt know how to talk to anyone !!!! Mike said to me after the first meeting he came away feeling like this man felt he was lying to him and was making it all up even though his own doctor had sent many letters because she was so worried about him .

And me , well I felt the same , I got the distinct impression that even though my husband Mark had come into the consultation room to 'back me up' on things when I've blacked out and cant tell him what I'm like then ............he didnt belive Mark either .............what on earth is wrong with doctors today are there so many people out there who are intent on makeing out that they are ill ( for **d knows what reason ) that doctors tar everyone that come into there consultation rooms as liars and cheats until they prove other wise.

Sorry this has been such a long post but I'm angry , I've just had three-four days of feeling so unwell , unable to go out , sleeping none stop , sweatting like a boxer again and having the most awful digestion problems and every time I've been sick I've wished it was on my new consultants HEAD !

Ami xxxxxxxxxxxxxxxxxx

P.S. and now my spell checker has done stupid , so excuse any silly spellings as it will not pick anything up .

[Ernie]

Hi,

Here we only get tested once, when we do. Then when we change doctors they ask for the files and they don't retest. It's a social medicine system and they want to save money as much as possible so they consider one test is enough.

I had many other TTTs but as a rat lab not as a patient.

[Rachel]

I have rarely been retested for things. New doctors go over my medical history and look at my old medical records. Some tests I have had re-done over the years, but only when a new symptom indicates a need for the test again.

How frustrating to have to keep going through the testing! I'm sorry your doctors are being so difficult.

Rachel

[iheartcats]

Willows -

Can I ask you something, if you don't mind?

Since you've had POTS for so long, do you think you have the hereditary (non-virus/other cause version?

Also - before you knew you had POTS (before it was a 'real disease' that doctors could diagnose) how did you function?

Have you been able to live a somewhat normal life? Family? Working? Etc?

I'm asking these because I was diagnosed almost a year ago and I'm going crazy dealing with it. I have no choice but to work right now and it's hard. Sometimes that takes most of my energy and other things slack (friends, family, cleaning, hobbies, etc). It's hard. Since you are a long-time sufferer of this horrid disease, do you have any advice for us who are just starting out?

I don't know why they keep testing you in the UK. You'd think with socialized medicine they'd want to do as few tests as possible. They obviously know what you have. It's well documented now! That's frustrating.

Thanks much for any advice/help. I'm so sorry you've had to suffer for so many years, and the many, many years no one knew what was wrong with you.

[momofsara]

Sara has had 3 TTT's. Originally, here in Alabama, and 2 times while she was living in California. All 3 were positive. The cardiologist she has now said when he first saw her there was no need to put her though all that again if even one was positive. I cant see doing it over and over, especially if the first one was positive. Just my opinion, as I see the pain and exhaustion Sara suffers from all the repeated testing shes gone through. Susan

[ajw4790]

Hi,

I haven't been retested, but my actual diagnosis was like a year and a half ago... I don't understand retesting close together or less there is a DIFFERENT test they want to do or the technology has greatly increased to show something new and different. But, I could MAYBE see testing again (TTT etc) 5-10 years later after original diagnosis or major change to see if the body's response to the test is very different. Even with this I am not sure that this would often change treatment? So, would it even be worth the retest? Not sure? I guess it depends on what they are looking for? If it is the same thing that was tested before, I don't see why those results would not be acceptable?

Good luck!

[Csmith3]

Yes, this is my experience. My local hospital is only small, so I tend to get referred for certain tests requiring more expensive equipment to the next biggest town, and then when they haven't got certain facilities, get referred on again until you get somewhere like Queen Square. And at each stage, everything is retested. I think this is the protocol to ration the most expensive facilities, but I find it incredible that no one looks at individual cases and pre-empts those that are likely to require several on-referrals.

I think some of the retesting occurs because the hospitals won't share the test data (only general correspondence like letters written to GPs etc). Most only keep test data for 10 years in any case, so I have also been retested at the same hospital due to 10 years lapsing from an original test. It is so annoying and, particularly for anything neurological, has very long waiting times. Perhaps there is a good reason, but I agree it comes across as if they don't trust their colleagues and have to prove everything from scratch.

I would go as far as to say that in some cases I think it is a sign of sloppy practice, and I have stopped certain inappropriate retesting by (politely) challenging their clinical reasons for retesting with the same fact pattern. If there are good reasons I am open to hearing them, but equally this innocent question has shamed a few of my doctors in the past who couldn't come up with any reason.

[flop]

I agree that is seems to be a UK thing, each doctor has their own way of doing tests and wants to see for themselves what is going on.

My local cardio did my first TTT in January 2005 - clearly POTS, no syncope but HR of 170 and BP 96/90.

In May 2006 when I was still very symptomatic I was told (by the same cardio) that my symptoms were now psychological and that I had "learned to feel ill", I was taking a beta-blocker, fludrocortisone, slow sodium and midodrine plus wearing knee high compression so "you must be well". He repeated my TTT with me on all my meds, wearing stockings and well loaded with fluids, to prove that I was no-longer ill. (I think that he thought it would be a normal TTT proving my psychological illness). Despite all the meds I still got my HR up above 160. After the TTT he made out that there had never been any question of my symptoms being anything but real!

At that point my local cardio had no further ideas for treatment options. I asked for a referral to Prof Mathias at the National Hospital for Neurology and Neurosurgery (NHNN) (otherwise known as Queens Square) for a specialist opinion. My local cardio told me that there was no point in sending me as he wouldn't add anything to what I was already taking.

I saw Prof Mathias in clinic in August 2007 and he arranged for me to go to NHNN for (you guessed it!) further testing. I had my TTT in London on some of my meds but off beta-blockers and midodrine. Although it was another TTT I almost wanted to have it done. They did much more detailed testing in London than I had had locally. My BP was continuously monitored by a special cuff on my finger (rather than having the tech push the button on a BP machine every 3 minutes). London also had me do things like valsalva, deep breathing and cold pressor tests that I hadn't done before. I had TTT on 3 consecutive days in London - day 1 an extended TTT lasting 60 minutes, day 2 a 10min TTT fasted followed by a liquid meal lying supine and after waiting supine for an hour a repeat 10min TTT, day 3 was not quite a TTT but lying supine then standing HR and BP for 15 mins then lying down whilst peddaling an exercise bike followed by a supine rest then repeat standing for 15 mins.

Prof Mathias confirmed that the tests show POTS. But only after doing his own tests did he write to my doctor to advise a new medication.

Flop

[willows]

Thank you all for your replies.

Flop , you are so lucky to have had such detailed testing in Queens square , as I said they really didnt care a bit about me when I was there and I was so ill after the TTT that I just heaved my whole stomach out all over the staff . I couldnt get one nurse to help me and as for getting my drugs , well it was ridiculous and my local doctor when I got home wrote to London and complained as even after 3 days I was still looking and feeling so unwell from the sheer neglect I had whilst under the care of the National Hospital.

Cat Lady, in the begining when I was just 13 years old I was looked on as some sort of silly girl who was attention seeking by my local hospital and doctors , it wasn't until my legs started to give way and I kept falling down swaetting with chest pains that the doctors actually felt something was wrong with me , but before than I was sent to see a psychiatrist who (thank goodness it was a very nice lady) told the consultants that I was ill and that she could see by just spending time talking to me how my whole body changed at times and how my blood pressure kept playing games ( up & down ).

I tried to work in my late teens but spent so much time off work I had to give up in the end at the grand old age of 17 years old as the leg pain, headaches, fatigue and just plain falling down got the better of me , but I did do a degree partly by post and partly by going to night school in my mid tweenties from a wheelchair as some of you are now in ( two years wheelchair bound)

I did have children , I had 7 pregnancies in all with three sets of twins , but only one of two sets of twins survived and only one other baby , Ali my eldest daughter , Emily my middle daughter and Mike my son , I had the most awful time with all three and nearly died with two of them , but I just wanted children and would go through this all again if I had to in order to be a mum , being a mum was the best thing thats ever happened to me and I thank god for every minute of every day I have with Mike my wonderful (almost ) 18 year old son .

The doctors now think that I inherited POTS probably from my late father , unfortunately I didnt know him that well as we had been kept apart for nearly all my life by my mother , but I did get to share the last 4 years of his life and came to understand that he had major health problems with blood pressure, heart problems, pain etc ..............most of what I have now.

With Mike having just been diagnosed with POTS I do wonder if my two daughters have it and have left messages for them to get a TTT done as soon as they can as I seem to remember my eldest passing out a lot in the past , but then its up to them to sort it out , thats is they actually believe me or not , they like my ex husband seem to want to live in this dream of an ideal world ( dont we all ) and do not want to except that Mike or I are ill , a case of sticking thier heads in the sand and hoping it will all go away and things will be all nice and happy again ............some hope !

If I have one bit of advice to give to you all who have been diagnosed with POTS in the past year or less its this:

Never give up trying to do that thing you've always wanted to do with your life .................it may take you longer , it may cost you pain , sleepless nights, worry and physical hardship , but in the end you will have proved to yourself and others around you .........that anything is possible.

I was told I would never get a degree in a hundred years .............. I proved him wrong.

I was told I would never be able to run a company of my own ....................proved them all wrong.

I was told I would never be able to have a child , let alone two or three...................wrong , wrong and wrong again.

I was told I would have to stay in a wheelchair for the rest of my life ................hello , I'm walking with sticks , but I'm walking .............wrong again mate!

I was told that as a disabled person I should make the most of what I have and not wish for the things normal people have or can do as it was a waste of time dreaming of things that will just not happen ..................

But I was not willing to sit around doing nothing for all my life and did do the things I wanted to do like :

travelled around the world, sometimes on my own , had three children, run two companies, helped raise money for the sick , needy and poor people of this country , got a degree, fought off two attackers in London who left me with no memory for 4 months, , come though two horrendous car crashers , one in which I was cut out of the car and survived a maniac ex husband who wanted to finish me off .........................so who's' the poor disabled person and who's the poor normal person ..............If I can be strong , so can you.

YOU are the one who can do anything you want with your life , being in pain , having terrible bouts of fatigue , headaches, falling down , sicking up over everyone and everything , loosing the ability to stand and walk is just a hiccup in your life..............YOU CAN DO ANYTHING YOU WANT and dont let anyone tell you differently .............I wasn't prepared to listen to the doctors who said the words 'YOU CANNOT' and at the age of 50++ I'm still tackling things I want to do , slowly and surely hitting them head on ..............and boy , oh, boy does the world know I'm here!

I'm still writing my books ( three on the go at this time ) still painting , still doing floristry and arts and crafts , mostly mornings now as by 2pm I have to rest on the bed until 6 pm to re-boot my energy and stop those awful sweats I get 24/7 but it can be done if you really want to make something of your life , its a case of thinking hard just what you can do well ...........and then go for it .

Kind regards to all Ami xxxxxxxxxxxxx .

P.S. anything else you want to know just ask .

[Megan]

Ami,

Thanks for sharing how much you've fought to have... It reminded me that I shouldn't give up, and that I deserve all the things any "normal" person might have.

Meg