POTS Specialist – second consultation

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.

holidays and hectic days!

Well, so much has been happening… and now at last time to relax a bit and report back…

Last weekend (end of November), i went to Scarborough! On my own!

Well, it is a two hour train journey and i booked disabled assistance for the first time. It went well and there was (usually) someone to meet me with a wheelchair to push me between trains and to carry my luggage as well. There was no-one waiting for me at Scarborough station, but my train pulled in right by the exit and there was no queue for taxis so i managed fine. When i arrived back to my home station there was a man to meet me but no wheelchair, as they were all in use… not really good enough when i had booked two months in advance! It was not too far to walk to the the station exit and he pulled my case for me, but the taxi queue was long so i had to take out my tiny folding stool and sit on it, but keep getting up to shuffle forwards as the line moved along… not exactly comfortable and the reason i booked the chair was to help me get to the taxi as it is standing in particular that is hard for me… as well as walking for more than a few minutes… well nothing is perfect and luckily i was not feeling too awful, but i could easily have been… he offered to queue with me but i told him could go as he was no use without the wheelchair… so i would say 7/10 for service… I was pleased that i could step off the train myself and was not dependant on them coming on to get me as i would have found that stressful, and i don’t think they are 100% reliable based on my limited experience. I will be travelling by train at Christmas as well, hopefully only one way, but a much longer journey and have booked assistance again. I hope it works then as well!

By the time i got to Scarborough i was really drained and felt very weak. I booked into the hotel (the same place i went last time) and could not really take in what was being said to me as my brain was shutting down… I lay down for a while and felt a bit better though. My feet were like ice and despite an hour and a half with a hot water bottle, when i went downstairs for my first treatment – reflexology – my feet were still not properly thawed out! The woman who was doing it said she couldn’t decide if they were warm or not as they felt so strange! My circulatory system is not well behaved.

I had another lie down then ate at the hotel that evening, and got talking to a really nice couple while i ate. The food was really good and it was nice to chat to new people and i really enjoyed the opportunity to be sociable as i find i rarely meet new people and have the opportunity or energy to talk properly.

The next day i had breakfast brought to me in bed (yes, this is a heavenly place) and then had a shiatsu massage (my first ever and really good – she did a gentle version for me which felt just enough to do something but not hard enough to cause any flare ups or pain – afterwards i felt looser and that everything was flowing better) then another sleep. I felt quite good then so i got a taxi down to the harbour and sat outside watching the sunset!

It was not as cold as i expected (i was well wrapped up) and it was so nice to be out in the fresh air. I wrote some postcards which i got from a shop next door. Once the sun went down and i finished my hot drink i went into a pub to warm up for a bit, (this is the view from inside the pub, of the remains of the sunset)

then went back to the hotel feeling pleased that i have made it out and about, as i feared i would not be up to leaving the hotel much and maybe not brave enough on my own. See my other blog for another picture of the sunset. I ate in the hotel again and chatted to the same couple which was good. I took a sleeping tablet each night i was there to maximise my chances of having good sleep and therefore good days!

The next day I had an aromatherapy facial in the morning which turned out to be more like a shoulder, neck, face and scalp massage with a face mask thrown in (i could have lived without that bit as my face didn’t seem any different afterwards) but the massage part was amazing and she really gave my scalp and head a thorough going over and as my head is always tense and painful it felt as if it released so much tension and got the circulation going really well. I had a nap, then my Mum came to visit for lunch as she was coincidentally in the area! She drove me five minutes along the road to a cafe and we had a nice lunch, then we drove all along the seafront (north and south bays) to get a feel of the place and see the sun setting again before going back for a cuppa in the hotel. I felt a lot weaker than the day before, and quite lightheaded and became tired quite quickly but it was still really nice. I had another sleep before the evening meal again, which i ate with the hotel owner (Helen) as i was the only guest at this point! It was nice of her to eat with me as it would have felt odd to sit on my own.

Got up the next morning very early for my train and Helen drove me to the station as she had time, which was very kind and gave me a big hug goodbye. It is so nice to know that i have somewhere to go for a change of scenery where even if i am really ill and need to stay in bed i will be looked after . I felt a sense of independance in managing to go away and largely felt fine while i was there. I wonder if the new tablets for POTS i am taking helped? Hard to tell. I feel it is so important to keep trying to do things, within reason and with careful planning, or i would miss out on so much and get stuck in a rut of thinking i can’t do anything or go anywhere… As my partner went to both Shanghai and New York this year and i was unable to go due to my poor health i felt it was important to try to have my own holiday as well.

Home again:

So then i got back home and have had a crazy week! I have had to abandon all routines, and have struggled to fit in my daytime naps most days, or have had them much later than i would like. I have had to get up early, then stay up for deliveries and post (the downside of doing xmas shopping online), then be in for the dog walkers to pick up and drop the dog back an hour later, then one day the cleaners came after that (after cancelling last minute earlier in the week, so i had already prepared for them and stayed up). We have had men in to fit new doors… well i use the past tense but they are not finished so we still have gaping holes around the new doors letting in a lot of literally freezing air (and probably snow flakes too!). They were supposed to come back the next morning to finish the job but the man’s axle on his van bent from driving on the ice, then was supposed to come the next day and he broke his little finger by slipping off his icy ladder. So fingers crossed (those that can) he will be able to come back tomorrow! Added to this the boiler broke down so we had no hot water (except the shower that i can’t really use for too many complicated reasons to go into now) and no heating except one electric radiator and a gas fire. Add in many drafts from front and back doors not sealed and sub zero temperatures and you get the picture… So i was ringing around, organising men to come and do these jobs, making numerous cups of coffee, fetching things for them and generally doing things i knew i shouldn’t, but did not feel i really had any choice.

Also my partner’s parents arrived on Friday night for the weekend, and the boiler was only fixed in the nick of time! The house was a tip from having the door men in and it all felt like chaos. The visitors left yesterday and today i am just going to do very little and see how my body is… i feel that i have been running on adrenaline for days and i am not sure what will happen next!  Again maybe the POTS tablets have been helping me cope as i have been more active and largely coping… who knows?! I am certainly still feeling POTS symptoms, but i am not sure if it is maybe less severe. I am unsure what feelings of weakness etc are from POTS and which are from ME, so it is hard to judge, especially when my usual routines have been so broken.

Also the boiler stopped again this morning… it has resumed activity after we pressed the reset button, but i suspect that the problem may not be completely solved, despite a new flue fan… i am hoping for an uneventful week once the door men leave tomorrow, what are the chances?

POTS – seeing the specialist

Yesterday, i went to see the POTS specialist! It was a positive experience, and although i have realised that i have been pinning a lot of hopes on her and her potential treatments for me, i have not lost that hope since speaking to her. It is the first time anyone has really tried to help me with medication (except painkillers/antidepressants which the majority of people will take at some time), which is the way many illnesses are treated and managed, but to someone with CFS/ME it feels very novel.

She said to me that half of those with POTS experience ME-like symptoms of weakness, fatigue etc and about 27% of people she sees with ME have POTS. I said “oh i am one of the lucky ones to have both” in a sarky way, and she said “well yes in a way you are as it means we can offer your some medication to help manage it.” So if they are not completely distinct entities, it could be said that i have the type of ME that lends itslef to POTS and that there are things that can be tried to improve my quality of life… although my first thought was that she was putting a very positive spin on the fact that as i have both it is a sign that my illness is on the more severe side of the spectrum in the first place! Take your pick! 

I had similar tests to those i had before and again my blood pressure was low and my heart rate was very high on standing – it was 152 beats per minute at one point! They always ask me how i feel when this is happening, and it is quite funny, as i feel ok, just a little lightheaded but it is so normal to me now that i think i have forgotten what it feels like to stand normally. I tell them i feel ok, and they look very doubtful! They only make me stand there for two minutes, i think any longer and i would struggle as i do notice i am swaying more as time goes on and my lower legs tingle and feel heavy.

So they did the tests, and then i spoke to the specialist who is really nice (as is everyone in the unit, it seems). She has given me Midodrine, a Vasoconstrictor, at a low dose to start with. I have taken one yesterday and one this morning and so far, no bad reaction! There are not meant to be many bad side effects, especially on a low dose, but i know i am quite sensitive to drugs so i am always worried about side effects. The ones to look out for are all things i experience anyway, so it may not be obvious unless a big reaction. The doctor says that minor side effects should be temporary anyway. Also it is good as i can still take the painkillers and sleeping tablets that i sometimes take as they don’t affect each other… result!

Although this drug is obviously quite a serious drug, and is recommended long term only if it has a marked improvement for people whose quality of life has been greatly reduced by POTS, i feel that it will be so worth it if it helps me. My quality of life in terms of being able to care for myself and get out and about has been so much reduced over the last three years and has felt like a steady decline, that any turn around in that trend is worth some long term risks. I feel lucky that unlike many chronically ill and disabled people i have not had to pollute my body with drugs just to stay alive, or get through each day, regardless of the side effects and the impact that may have later (and i have a prospect of “later”). Because ME is not (seen as) a terminal illness, at least, most people live with it, even severely, for decades; there is always a feeling that we want to preserve what we have got, health-wise and not jeopardise the future by taking risks now, in case we get that miraculous recovery and because we don’t know how long we will have to endure this if we don’t. But it gets to a point where the implications of living such a limited life are also so “dangerous” on many levels that any drug that can help is welcome. That is how i feel now. Not that this one seems particularly risky but it makes me think of these issues. The prospect of taking a drug every day for the forseeable future is strange for me. I only started taking the contraceptive pill recently and that was enough of a decision, although i am so pleased i am on it now. I realise this is a priviledged position, but it also comes from the fact that there are no drug treatments like this for ME.

It is interesting to compare the way i have been diagnosed and treated for two conditions that are very similar in cause (often viral, but may be other factors) and which affect very similar bodily functions (autonomic nervous system). No psychologist assessments so far for POTS! Just go in, have a test, and take some tablets!

It seems that many of my worst symptoms could be attributed to POTS, so there is great potential for improvement, if we can find a drug which works for me…

Top of my list would be: ability to stand up for more than a few seconds/minutes which is variable and unpredictable, ability to walk for more than a few minutes without making myself feel very ill for hours or being worried if i can make it back to the front door/taxi, not having hot flushes many times a day, not having blurred vision, not having such constant pain and tension in neck and shoulders and also bad headaches practically every day… there are many others but that would be a start and don’t want to ask for the moon on a stick… so no pressure then doc?!?

Interesting what she said about pain, as she said i may have trigger points (this is known as myofascial pain, and is what people with fibromyalgia typically have, and many people with ME have it to some extent as well. I have just bought a book about it, The Trigger Point Therapy Workbook, so i hope to work on my trigger points soon as well, once i have found the energy to find them and understand the book!), but she said that there is a pattern of pain associated with POTS which she called “coathanger pain” which is pain across mid back, shoulders, up the neck into the head… this is my exact pain pattern! She says it is caused by the muscles being starved of oxygen as blood flow in upper body is limited by POTS and the larger muscles show most distress. No wonder my brain hurts!! ha ha.

So my brain is literally hurting now and i am sure there is more to say about POTS but it will have to wait. All i will say to close is that i had no idea how much the themes of my first blog post on Hope and Acceptance would be so much the themes of the whole blog, it seems it always comes back to this for me. Now i have some Hope again (the most i have had since early on in the illness when they were still telling me i could recover and i still half belived them) and it is very dangerous territory… but maybe i am becoming more experienced in coping when hopes are dashed? i “hope” so!!!!