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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…

Well, this week has not been good. I have not been really bad, but not well enough to do anything much for long. Some days have been as bad as ever, seeing a return of bad upper back pain and regular headaches among other things. I have had to sleep a lot and have just not felt much sparkle…

Yesterday i went to see the CFS specialist again. He suggested it may be the medication causing this down-turn as he says it is generally not well tolerated (The POTS specialist did not say this to me, who is right?). Up til then i was thinking maybe i was fighting the nasty virus my partner has had all week, but i take his point. Maybe i just didn’t want it to be that, but thinking about it, it makes sense. I have had more problems with temperature regulation again, including goosebumps when warm (particularly on my thighs) and cold feelings on my head when my body is warm. Also a difficulty getting warm, followed suddenly by being over-hot and sweating. Goosebumps is meant to be a side effect, paricularly on the scalp so it kind of follows.

I am going to give it another couple of weeks to see if things improve as my body gets used to the new dosage as it was three weeks before i was sure it was having a positive effect intially. If no better i will ring the hospital and see what they suggest. After the initial success, i don’t want to give up on midodrine too early.

Although i am not hideously ill, i feel pretty much as i have pre-medication which is disappointing. What seemed “normal” has now become “worse than expected” , as i got my hopes up, which is not a good way to see it mood-wise. But i am well practiced with patience and i am trying to just see what happens. I really want to go to a lecture on monday evening that the POTS specialist is giving, and it is my birthday during the week so would like to be able to do something outside the house next weekend to mark the occasion. What we attempt will depend how this week goes… my short-list is:

  • Lunch/afternoon tea at a fancy hotel/country mansion type place up the road (easy ten mins drive for my partner) where i have not been before
  • Go into town to the arts cinema, with optional meal out afterwards if stamina allows
  • Go to National Glass Centre in Sunderland – this is a very long shot and the meds would have to kick in big-time as it is quite a drive and would need to be pushed in wheelchair etc etc – but no point ruling it out til the time comes as I have wanted to go there for years and have never been. There is a really interesting-looking exhibition on called Beautifully Crafted (see above link).
  • Also in Sunderland are the Winter Gardens, which again i have not been to, but i could never do both things at once… it is winter though so must be a good time to visit 😉

Or i may have other inspiration in the week, who knows! I hope i can do something anyway… If not i could become old AND grumpy overnight!

Also, to throw a spanner in the works, my partner has been ill with a virus all week and is still not tip-top, so it will depend on how she is doing by then as well… fingers crossed… again!

Today i went to see the POTS Specialist again. She was pleased to hear that i have been feeling better and said it has made her New Year! I said that it had certainly made mine 🙂

They did not do the tests again so i don’t know if my heart is racing a little slower or not these days. She said it was too early to see much of a difference but they would repeat the tests again in a while.

She has doubled my dosage of Midodrine as i was on a very small dose. I now will take 5mg twice a day, morning and lunchtime. She said she hopes i will see twice the improvement! I like her enthusiasm and her positive attitude. She does not make wild promises but at the same time is optimistic and so enthusiastic about helping me.

I took the first “double dose” at lunch time and my hair went all tingly and i felt a bit shivery like goosebumps when i went for a lie down a bit later. This is the only side effect i had when i started taking the tablets 6 weeks ago and it soon passed. It is not unpleasant, quite amusing really as side-effects go!

I asked her if there was anything else i could be doing, such as leg exercises, as i had read that keeping legs toned was helpful and mine are obviously not in great shape after years of illness and limited activity. She said NO, quite strongly. She said it took years to get into this state (!) and that it will take years to get out of it and that I am not to push it or go “running marathons”… er, well that was not what i was thinking but point taken, doc! So gently does it…

I also asked if i will always be on this drug. She said that maybe i would be but that hopefully with taking the medication and increasing my activity the POTS will improve too. She said i will keep going to see her and she may adjust the dosages as we go along as required, then after a year she will assess if we can reduce the dosage or if we need to continue for longer.

This is promising as i was thinking i would maybe be stuck on it forever. The thought of it actually getting better and not needing any medication one day is beyond my wildest dreams, having only just got a diagnosis and treatment 6 weeks ago!

I am really starting to dare to hope that i can eventually return to the levels of health i had about 3 years ago, when i was working 20 hours per week. (This is a world away from where i am now, however, so it won’t happen overnight). I am certain my POTS symptoms began at this time, although they only became serious gradually about 2 years ago. The last year they have been getting noticeably more and more debilitating and have limited every activity and caused so many of my symptoms. It will be so interesting to see which symptoms are persistent once the POTS symptoms are managed/reduced. I am getting ahead of myself though…

I am getting out and about more and coping well. I still have to sit down and can feel the symptoms if i stand still for even a minute but am learning to read when it is ok to continue and when it is not! I was so happy today after seeing the specialist, as instead of getting a taxi home, i walked down the hill to a chinese supermarket that i used to love popping into and have not managed to visit for at least 3 years. I bought a few things and then bought some fruit and veg from a stall by the bus station and got the bus home! I didn’t feel ill on the bus and felt ok standing to pay in the shop as well. It is such as small thing for a healthy person to walk about for half an hour and get the bus but such a novelty to have the freedom to do that rather than get a taxi home and collapse. I saved £7 by getting the bus, so most of my shopping was free! I did still have a well earned nap this afternoon, of course! I had to stop myself buying everything just for the novelty value as i still can’t carry much without getting aches and pains afterwards.

Yesterday i went ten minutes on the bus to some shops nearby and got a few things and had lunch out, and got the bus back home, and tomorrow or sunday i am planning to go to an art gallery in town with my partner. I will use their wheelchair as i want to relax, take my time and be able to see things that don’t have a chair nearby, but to go out so often in quick succession is something i could not have contemplated 2 months ago.

I am still not walking the dog but hope to build up to doing it on days where nothing else is happening, which will be nice, as i have really missed the fresh air and nature fix that i got on good days where i could go for 20 minutes or so. Also the opportunity to take my camera and record anything beautiful i see. I have not missed the way things had become where i was out for 5-10 minutes and felt like death, sat on a bench across the road and worried that i would not make it back to the door and had to lie down for a long time afterwards to recover. Hopefully i won’t have too many of those days again.

All this hope of improvement comes just weeks before my DLA tribunal, although i may well still qualify for something it has thrown me into a quandry about whether to go or not. I do not want to get ahead of myself in my enthusiasm for change and i am not sure what i can and can’t do on a regular basis as it has only been a few weeks and i have had bad days, of course, among the good. I think i am not in line for higher rate mobilty now, as it was always borderline and i feel more able to get about short distances and more predictably, although i have not really tested it on a regular basis and have only been out when i felt at my best time of day. The lower rate care therefore is all that is left and i think this is probably out as well. It is a shame that i almost definately qualified for that until a few weeks ago, so all that back pay is lost as i am improving at the last minute! I don’t really care any more though, i am just pleased not to feel so vulnerable that i cannot look after myself properly. I am sure i will still need help with cooking sometimes and having my hair washed and other bits and bobs, but i am unsure if it is enough for DLA… I just hope i can improve enough to leave all of that behind… I will just talk to my benefits advisor people and see what they say. On the one hand there is no harm in attending the tribunal and letting them make the decision, after all i have been through to get to this point, but on the other hand i just don’t want to go through it if there is no point. I want to look to the future.

Well, Happy New Year to everyone reading my blog!

It is about time i posted an update about how things have been going… thing is, i have been so busy! Yes, it is time to be definite about the new the new tablets for POTS… they are doing some good, for sure!

Symptoms improved include:

Firstly and importantly, i  have not had to lie down in a public place, near collapse, due to a POTS “episode” (where my heart is beating very very fast, i am melting with heat radiating from me, feeling very dizzy, weak and ill wondering how i will get home), which is very welcome! I suppose this means my heart is not beating as fast anymore… although it still seems to race sometimes… we will see what the machines say at the hospital when they test me on Friday!

Headaches and muscular tension in upper back, neck, shoulders and head – still there but less pain and headaches less frequent.

Blurred Vision – seems a lot better – amazing what a bit of blood to the eyes can do 😉

Temperature control (less hot flushes and icy feet – although my new sheepskin slippers may also be having an effect there!)

Walking speed (short distances obviously!) and ability/speed to get up from sitting both often better.

Recovery period – i have been recovering more quickly than i would expect from such “big” things.

I am feeling better in myself, especially in the mornings and can usually wait til later for my nap if i need to.

I often have more stamina for talking to people, going out, being online or reading etc.

Things i am not sure if improved yet:

Distance i can walk and time i can stand up for: I have done a bit more of these to test them out but do soon reach my limits… have had a couple of good experiences where i felt it was a lot better but in general it is not a lot better so the jury is out on that… i am not getting to the point of collapse as quickly (see “episodes” above).

Things i have been doing over Christmas and New Year…

Travelled for seven hours door to door to stay with my Mum: this was a trauma and i NEVER want to see a train again, the wheelchair assistance helped (once it arrived) and if i had not missed my connection the journey would have been a bit easier… however, although i rested up, i did not feel as bad in the following days as i expected so i was very happy about that.

I stayed at my Mum’s house for a week and spent time with my sister, her boyfriend, my uncle, grandparents, dad and other people that came around and in general felt ok to chat and join in. It was nice to be so sociable!

I went out for lunch with my uncle, mum and sister.

I went into Marks and Spencer Simply Food (my sister drove me to the door and then took me home!) and i enjoyed browsing all the lovely things in there – i had no idea all the nice things they have!

A friend of mine drove me back home in her VW camper van, then stayed for a couple of nights to see in the New Year with us. The journey was lovely, sunny and frosty and so much more relaxed than the train. The seat in the camper van was really comfy and had arm rests and tilted back so that i could doze as well!

On New Year’s Eve we drove to the coast to a lighthouse and i walked a little way and looked in some rock pools, but saw not one crab! Once i went there years ago and there were hundreds so i was a little disappointed… the seaweed etc was beautiful though. We then went to a pub for lunch on the way home! We were out for 3 hours! I then had a sleep and stayed up til 1am to see in 2009 with card games and shortbread biscuits… needless to say i slept nearly all of new year’s day, but happily enough as there was a good reason for it.

Since then i have walked the dog once, a short distance but it was not too hard. I have been out for a couple of hours in the evening to a social meeting of creative people, AND been back to an M&S food shop 😉

Today my main task is to write this, have a bath and not much else as i don’t want to over do it too much and my headaches have been returning a little… all in all though it was been a really encouraging start to the year and although i still have just about all the POTS symptoms i had before they are less distressing and not as bad as they were. I am hoping when i go back to the hospital on Friday we can build on this good start and that this will not be it, as although it is a huge improvement from where i was before, and i am very grateful, i would like a bit more, please! (call me Oliver!)

I do not expect miracles, but have been operating at such a low level over the last couple of years that it would take several hundred percent’s increase to get back to where i could do certain things with any reliabilty, such as drive places and be able to stay there a while/walk a little then be sure to feel safe driving home, go out in evenings/socialise more often, be able to travel long distances to visit my best friends, be able to go somewhere regularly and reliably like an evening class, be able to wander around a little more to allow me to go into shop or visit museums or events more and to allow me to take photos again which usually involves a bit of wandering/standing to get the best shot – this last one has been very hard this year and i miss it but it would not take much improvement to be sometimes  possible again. I would also like to be able to take the dog out again at midday and not have to employ a dog walker to do it!

The other thing that may be coming back is the ability to do “boom and bust”… i know, i know, this is the thing that we are told never to do as people with ME! BUT the POTS symptoms have meant that i have not been able to take advantage of good days (i have not had much variation in my days – maybe operating more in terms of a good half hour!) to do something big, and to then suffer later. While this is not an ideal way to live, it does give us the option to do something we really want to, or to experience something important to us, even if we have to suffer the consequences, sometimes it is worth it!

So it is all good, and i have hope that this year will be a big improvement on the last. Even if this is a good as it will get, that will be a huge improvement. It is so nice to see the downward spiral of levels of health turn a corner and start to rise again, for the first time in maybe seven or eight years! You can see why i am excited!

The only depressing thing is that while I am getting a diagnosis and treatment, so many people are suffering with these symptoms and not getting any such joy. It is only because i volunteered to take part in a research study that i was diagnosed and got to see the specialist, and only because i live in the city i do that i had access to that option. I knew something was not right, that it was more than my usual ME symptoms and that it was seriously affecting my ability to carry out normal day to day activities in a very specific way. My doctor said “I just think your ME is very bad at the moment…” and would not refer me to anyone, so i took matters into my own hands. I was still shocked when my suspicions of POTS were confirmed but so relieved as well to have it acknowledged. I know of two other people with severe ME who almost definitely have POTS (i am no doctor!) but who have no hope of getting properly tested or treated. It is just another set of symptoms that they are needlessly having to cope with on top of everything else.

The drug i am taking, Midodrine, is not even licenced in the UK, so i think i am just getting it as i am part of the research being done at the hospital. It seems early days in POTS treatment in the UK, i hope things improve soon for everyone else as i have a feeling that there are lots of us out there needing help with this…

ME/CFS Awareness

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