So, i went to see the POTS specialist this morning for my 3 month review and this involved setting my alarm for seven am… i have to take my midodrine then wait half an hour before rising so i lay there until half past trying to convince my body to rouse itself… it was hard. I had a little breakfast then my partner drove us to town. As it happened the rush hour was lighter than usual and we got there quite quickly, but happily i was seen a bit early too.
I was told last time that she may give me another drug to try on top of Midodrine when i go this time, but had not told me what it may be. I had a bit of a nightmare thought a few days ago that it may be SSRI anti-depressants as i have read they can help with POTS, and also i know that beta-blockers are used too (they have side effects which don’t seem good for a pwME). I started remembering all the side effects and experiences of being on anti-depressants and started to worry about what to do if this was her next plan for me. One the one hand, if it would help the POTS is it worth trying again, despite my negative experiences and associations? I was not sure.
But thankfully all she suggested was upping my current dose again and taking more of it earlier and not bothering with any at tea time. I am happy with this as although i have not felt great the last three months and the first two months after upping the dose last time i really didn’t think it had made a lot of difference, the last few weeks i have felt stronger in myself and think at last it could be midodrine having a positive effect. Month two was plagued by wedding recovery and virus, so that could have delayed any awareness of it working being apparent.
I did ask her what the other drugs may be that we may try in the future. She reassured me it would not be an SSRI, but a new drug to slow the heart, or Florinef, which i have heard of. So i am happy to hear that.
The meeting was over pretty quickly and i came away feeling like i had not said something. I often feel like this though, especially when i have been building up to a meeting for ages then it is over so quick and i don’t trust my brain so much these days to remember everything either.
I did not mention the urine test i took, but more importantly i did not mention the muscular pains and tensions, headaches and skin tenderness that continue to plague me. They are more ME related than POTS related but who should i talk to about them (if anyone)? I am no longer seeing the ME specialist as he said i didn’t need to see them both and the POTS specialist deals with ME patients/diagnosis etc. but when i see her she doesn’t ask about those things. My GP would probably not have the specialist knowledge about ME and I have never got much useful out of them about specific symptoms before. I no longer see a particular GP, i just take lucky dip when i go as i have given up on the one i used to choose and have not settled on a new “favourite” yet. I only really go for sick notes anyway as my employer still wants them(!). I think i will see if these symptoms improve over the next three months and if not i will make a mental (and paper!) note to mention them next time i go. Life would be much more pleasant and productive if these symptoms were not so often present… I think the POTS specialist thinks that all my symptoms will improve as the POTS is treated and improves – this has largely been the case, but has affected a few dramatically and some not so much.
We shall see, as always…
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July 10, 2009 at 2:55 pm
cusp
Well sounds like quiet a productive appointment anyway and at least you don’t have to take SSRIs. Good idea to write down your questions – I always do now: have a piece of paper next to the bed and jot down stuff as I think of it and write it out ‘in best’ ;0) so I can take to doctor. It was invaluable when I went to see my GP on Tuesday as I wasnt feeling at all well or with it (turns out it was a cold on the way) so I coudl just read off my crib sheet.
Even so I still came away with a prescription for an SSRI because he said ‘It’s all we’ve got’. Surely, somewhere, there must be an NHS doctor in the UK who will just look outside the box and enable PWME to try other treatments. No ???? Didn’t think so.
Have a rest now and recover for the appointment and enjoy your weekend ;0)
July 10, 2009 at 4:07 pm
ashysheela
Yes i also have paper by the bed as when a thought has gone, it often is really gone these days – got to catch them while we can
I always take a list if going to the GP for more than one thing – has been very useful in past, as you say, when speaking/thinking mechanisms break down. Also i find the “what can i do for you” always makes me want to say “oh nothing, sorry to trouble you” and having things written down makes me more likely to say them somehow – not that it usually does a lot of good, as you say! I think that it is more than their job’s worth to go “experiemental” with us (i.e. try to help) ah well. I am so lucky to be getting some help from the nice professor…
Have a good weekend yourself
July 10, 2009 at 6:23 pm
Rachel M
It was nice that you got to the hospital without hassle and safely came home.
As for the treatment progress, we just have to be patient…, as we tell each other. I hope the increased dose of Midodrine will show positive improvement in time for your holiday. But it would be asking too much, I’m afraid.
Let’s keep hanging in there.
July 10, 2009 at 6:41 pm
ashysheela
thanks rachel, i am planning on taking the full new dose right away rather than gradually so that hopefully i can get any side effects over with in the next few days, that will be something… it is meant to have a fairly immediate effect but i have found it takes a while for me to feel much benefit, i am still happy to be recently feeling what i think it the benefit of the last raising of the dose three months ago
I hope you can feel some benefits of your medication soon.
July 13, 2009 at 4:25 am
alvason
Hi Ashy, glad your trip went quite well and that none of these feared drugs were suggested. It is so difficult to remember everything and I too feel like a bludger (in the Australian vernacular) when often doctors just don’t respond and seem not to want to know about symptoms – I had nerve pain in my feet for a year before anyone took any notice.
I tend not to mention cfs any more as it just gets the brush-off. I think friends and folk we know with similar unwellness are the best source of help. I don’t even bother scouring the Internet for solutions as I used to on a regular basis. If something developed, I am sure we would hear of it in the media.
You have a great attitude of perseverance. Best wishes!
July 13, 2009 at 5:48 am
ashysheela
thanks adam, it’s hard to know when to persevere and when to save your energy isn’t it?
I am not sure i always have the right balance. I certainly don’t search for a cure as such any more among all the grand yet empty promises that are bandied about (that is empty as in empty pockets too!), but i cannot help but fight for what is within reach, or should be: some treatment for (or easing of) my most difficult symptoms (ie some sense of a quality of life) and fair treatment and due attention from medical services.
I have realised i am a fighter, not sure if it always works in my favour!!
Thanks for checking in on me
July 14, 2009 at 6:11 pm
Eve
Hi,
I have suspected POTS and was wondering were abouts in the UK you are. I asked my cardiac consultant to refer me to a POTS specialist if this is what I may have and his reply was ‘their arn’t any’!! Any information you could give me would be greatly appreciated.
I am unsure whether I have this as they have found an adrenal tumour and are questioning whether this is the cause (Addisons and Pheochrocytoma cause POTS symptoms) . I am experiencing no postural intolerance at the moment just don’t feel well. When I had the tilt table test my hr jumped from 90-140 and my bp rose. I was in hospital for 7 weeks really unwell, having hypoglycemic attacks, chest pain, rapid pulse, palpatations, t-wave inversion, weakness, nausea…the list can go on!! They found out I have ceoliac disease to. Because of how unwell I and weak I was I don’t know if this affected the Tilt test. I am now on fludrocortisone and am feeling much stronger (they put me on this as it treats POTS and adrenal issues). I have no tachycardia. My bp never drops although I still feel dizzy. Throughout all this I feel ill when laying down as well as when i’m upright, and have woken many times from my sleep with symptoms!!
It is comforting to know that there are people in the Uk with experiences of this condition.
Kind Regards.
Eve
July 14, 2009 at 7:45 pm
ashysheela
hi eve, sorry to hear about all your health problems. I live in the North East and am only getting treatment as part of research, so your consultant may be partly right as i don’t think anyone gets treatment as it seems it is not properly recognised or researched in the UK as yet… all i can suggest is look at the physician list here: http://www.dinet.org/physicians.htm
and see if there is one near you. Mine is listed there. If you live nearby to one you could see if there is any research study you can take part in, which is what i did, but your case seems quite complicated so i am not sure if you will easily fit criteria
Best wishes and i hope your cadiologist or someone else can help you with your distressing symptoms.
July 15, 2009 at 1:18 pm
Eve
Thanx for getting back to me. I live in the North West (Liverpool) and will contact the dr’s on that list as I will travel…anything for some help
x
If I get a definate diagnosis I will leave you a post. Once again thank you for your reply.
Eve x