In the last few weeks I have noticed a gradual improvement in my stamina. I think there are a number of things that are potentially contributing to this improvement, which is great whatever the reason, though I would like to know what exactly is helping so that I can continue with it!
About six weeks ago I went to see the POTS specialist and had a list as long as my arm of current and pressing issues – she (rightly) could not deal with them all and it was not a successful appointment (for that and other reasons) and it upset me, but I could not pick and choose between all these issues as I was just overwhelmed by various issues which were all severe. These included: Sleep, Neuropathy and Trigeminal Neuralgia, Muscular Pain and Tension as well as other pain issues, POTS (this was low down the list so you can see how bad the other stuff was!), as well as medication issues.
She gave me a new medication to try for POTS (Diltiazem). I did not start it for the first few days as other outcomes from the appointment were that I should stop taking my sleeping tablet (eszopiclone) to see how I am without it, and also I had only just increased my dosage of Gabapentin (for Neuropathy) over the previous few days, so I did not want to confuse things by doing it all at once.
Also around this time I was having massages of my back, neck shoulders and head which were pretty intensive as the pain and tension there was really getting unbearable. My head felt so tight and painful and my scalp was really tender to touch in places (always is a bit, but was getting very bad and more widespread). My neck felt very painful and weak and was clicking in a very disturbing way low down my cervical spine. Shoulders and upper back, well, the usual. A couple of days after the third massage I felt the tension really lifted and I no longer was taking painkillers every single day. The clicking was also much less frequent – I think the muscles were not clamped so tight around the joints. This was also the time that I started taking the Diltiazem, but I did not think it would do anything and apart from the pain/tension improvement I did not feel any different. A few days later I had my first acupuncture appointment.
It was another couple of weeks before I had the second appointment and did the Tai Chi (and “broke” my back). Then another week until the third, when I started to use the Alpha Stim (see previous post).
During the last few weeks I have noticed a gradual increase in what I can do in the day. I am certainly more active, particularly mentally. I am also sleeping much better and dreaming vividly all the time! I have taken the sleeping tablet again briefly when my mum was here and it confirmed what I thought. It does help me get to sleep but once it wears off in the early hours I feel more awake than I would have done without it. Very odd. As it is I am sleeping much more deeply than I have for a long time with no drugs at all. I am still getting up several times for the toilet but am just getting back into bed and back to sleep easily. I am also sleeping deeply most days and later in the day than I was. It is working for me despite being bad in theory to sleep late in the day (sleep hygiene blah blah). I think the higher dose of Gabapentin is helping to control my nerve related pain and discomfort which used to flare up every time I got out of bed (or in!). It is still there but milder and as long as the bedding is smooth and flat underneath me (a constant battle) it is usually ok. I think with me Gabapentin takes a few weeks to reach it’s maximum efficacy. When I first took it, although there was some improvement it was not for a few weeks that it really felt more consistent, and the same has happened with the higher dosage.
I think perhaps the added activity is also helping the sleep. I am being careful not to overdo it, though some days it is hard to stop pottering about with little things, as they all add up. I have at times got that “wired” feeling of having over-stimulated myself, but I am also recovering more quickly. I have had the odd bad day but overall it’s a very positive trend.
I even went out into town (being pushed in wheelchair). We went to three shops one evening and I did practically all my Christmas shopping. Then we went for an Indian meal before returning home! It was really great to have a meal out and I felt pretty good throughout.
I hate department stores (it was only them that opened late) but I did not get over-hot and being in the wheelchair made it much better for obvious reasons (like being able to go fifty times further!) but also in terms of navigation, which I am rubbish at in shops. It is so nice to allow someone much better at it than me to push me around: she knows where the lifts are, where the exits are, how to best get from one shop to another etc. So much more relaxing!
I also find the decision-making hard but as the shop was not too busy or noisy and I had a list of people to buy for, I just stayed calm and focussed and got through it in no time. Such a relief and great to avoid lots of deliveries coming to the door at random times when I am in bed in the day.
The most amazing thing – yes I am getting there, waffle waffle – was the payback… or should I say LACK OF PAYBACK!!! I rested the following days, but was still pottering around more than I felt I should following such a big trip out. Day three I really felt it would hit, but it didn’t really. This is unheard of in my world. I was only saying to someone more moderately affected than me a few days before that unlike her, I am rarely surprised by how ill I feel, as it is predictable: do something slightly more than usual, second day, bam – feel awful. I take a few more days to rest, then carry on with the usual routines. Even my IBS did not flare up too much after the meal out, which again, it usually does even if I am careful about what I eat.
So I was on cloud nine about that. It really made me feel that the improvements are solid, even if I have not felt quite so strong since then. I feel an upward trend again at last. I am kind of hoping that most of the improvement is down to the new POTS drug. It has been about a year since I felt any real improvement in function from Midodrine, the other drug I take for POTS, which has plateaued really, despite some dosage increase. I also tried Ivabradine which I was not sure about in terms of improvement as I had such severe neuropathy at the time I was in a lot of pain and not sleeping well at all, so I could not tell. I could not get a prescription for that in the end anyway.
If the acupuncture is helping too, then all to the good. If I can get a decent improvement in pain through that then that will help me hopefully to move and relax my muscles more and increase my function again. I like to think so anyway. I feel a little hope creeping in…
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November 25, 2010 at 3:33 pm
Jo
This is great! Wonderful news. Long may it continue. 🙂
November 25, 2010 at 10:19 pm
upnorth
Wow, this is great news….I really hope this slight increase in stamina lasts. When I’m crashed I often appreciate only then how much I WAS able to do in retrospect….so it’s great that you’re getting a little more active and not paying.
I also think it’s best to compare ourselves to ourselves mostly. I get most depressed when I compare myself to healthy people my age – then I see this great contrast and realize how low I function.
Sometimes it’s so hard to pinpoint what caused the improvement, so it’s nice that you have an idea.
November 26, 2010 at 12:45 pm
ashysheela
thanks both of you. i think i have jinxed the good sleep as the two nights since i wrote this have been less good! Ahh well, swings and roundabouts… Yes upnorth, i think comparing ourselves to ourselves is very wise. If i compared myself to healthy people this improvement would be negligible really!
November 26, 2010 at 1:59 pm
alvason
LACK OF PAYBACK!!! … I feel a little hope creeping in… So good to hear! I always read your posts with keen interest and it is so heart-warming to hear such good trends …
take care, Adam
November 26, 2010 at 7:50 pm
ashysheela
I always appreciate your enthusiasm for my posts!
December 1, 2010 at 9:24 am
rachelcreative
It’s about time you had some relief! So pleased to hear it.
I’m a little muddled – do you think it’s the increase in Gabapentin that’s the key or the massage or the alphastim or these three combined?
Remembering Teitelbaum saying improvement can come if we get pain, sleep and hormones under control – but also the feeling (with the NHS) of how the hell do I do that?!?
Sounds like you may have found a way to boost a couple of these. Fab.
Much like the effect I’m finding with LDN I think. Yeah 🙂
December 4, 2010 at 11:26 am
ashysheela
Hi rachel, yes i think the gabapentin is reducing the disturbance when i am in bed from nerve pain, though it is still there enough to be quite annoying at times! I am sleeping better and this must be a factor in that.
I think the new POTS drug is helping a lot as that is exactly when the slight changes seemed to start, and also the acupuncture/alpha-stim i think have consolidated this effect and helped with back/neck pain a lot, as it was getting unbearable.
My acupuncturist has been away so i have not had an appointment for 3 weeks and gradually things have been less good, so we will see what happens after i go back on monday (if we can get there with this weather!).
Yes, that was when i got frustrated with Teitlebaum, no way to tackle the hormone part especially, but i think he is right about tackling various issues and seeing an improvment as this last year I have felt no improvement as certain symptoms/issus have just been so dominant, namely pain of varying types and sleep issues. It cannot be under-estimated how much these can affect our functional abilities, mood, and well everything really! I sometimes kind of felt that my underlying energy was not as bad as my symptoms, if it would be given half a chance.
I am just trying to hang on to this slight improvement, while not really understanding it. i hope it will become clearer over time what is going on.
The one thing i also have changed that i did not add above, is that the last couple of months i have been taking my vitamins/minerals religiously. I stopped taking most of them for qute some time as I was not sure if they were making IBS worse. Maybe they are helping the general “effort” too!
When I get to know a GP better I think i will bring up LDN… I also have an appointment with the “CFS” specialist in February, maybe I should ask him about it.
May 20, 2011 at 6:34 pm
Fiona B.
Glad to hear you are doing better!
Are you still taking midodrine? Have you talked to your doctor about going back on ivabradine again? There have been studies about it, and I heard of doctors prescribing it:
http://www.theheart.org/article/1113617.do
And doctors in the UK prescribe it for POTS:
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome