Tuesday, 29 July 2014

Lots of updates! Various appointments plus last few weeks

I promised an update on my other appointments, so here goes... (There's also a general update at the bottom)

Maxillofacial unit
My facial pain is bearable at the moment, having increased my pregabalin fairly recently, so we're leaving things as they are for now.

Asthma review
Peak flow was 390, which is really good for me. Agreed to keep medications the same.

GP (PCP)
Appointment went well. Among other things we discussed my rib pain and he thinks it's my intercostal muscles. I am trying some ibuprofen (alongside my other pain meds) to see if the anti-inflammatory properties help; he said it was what he'd use for 'normal' patients so it was worth a try. I said I wasn't keen to try anything stronger than tramadol and he agreed that they would flatten me.

Immunology/CFS Consultant
Appointment was really constructive.

I said my balance had got even worse, and he suggested I got a wobble board to practise my balance.

I said my temperature was all over the place and he said it is a common problem with CFS but nothing can be done.

I mentioned that I was concerned that my hands have been shaking at times, normally in the evening, and asked whether it was likely to be due to weakness. He agreed that it was, and suggested I squeeze a stress ball and/or use a gyroscope exercise ball to strengthen my hands and wrists.

I said that I've been having some speech problems. He says stuttering is common and he wasn't concerned but if it starts causing major problems I can be referred to speech and language pathologist for vocal exercises. He said that he felt there were other things more important to focus on at the moment.

I mentioned that a GI consultant had said that he thought it was possible I have gastroparesis, but said that my nausea etc hadn't been so bad recently so I wasn't keen to go ahead with testing at the moment. He said that if it flares up again, there is someone in a nearby city who looks into neurological GI problems that I can be referred to.

I mentioned my rib pain so my vitamin D is being checked and I've been on folic acid a while so my folate levels are being checked.

Most importantly we discussed my plans for returning to Uni and he agreed that a return in September can go ahead but that I should only do 3 afternoons per week to start with. I was VERY happy to get the thumbs up to start back, even if it is only part-time to begin with - yay!

Update
I coped remarkably well living with friends for a week at my university city while I went to appointments. We had some lovely days and evenings out. I feel a bit more at ease with the idea of going back having managed relatively ok while I was there.

I wasn't managing to help out with anything really, and I feel bad relying on friends so much but I'm sure we'll work something out. I felt very aware that I need a lot more help than I did a year ago, and I also (ideally) need help that I'm not willing to accept. I muddled along ok though- I managed to keep my hair washed regularly and everything like that, which was an achievement. I've had a shower stool (for at the sink) and a bath stool (for having showers in the bath) delivered ready for September, and they helped. I was also pleased that I made sure I spent plenty of time resting.

My mobility and balance have deteriorated recently and I felt a bit unsteady getting around the flat- I need to find all the places to grab hold of/lean on and get my confidence back, but hopefully that will come with time.

I then went back to my university city a second time for my tilt test, and two trips so close together in addition to the tilt test itself, knocked me back a bit. The last week has been a bit rough.

I can't believe I've been diagnosed with Neurally Mediated Hypotension for a week already. I've been trying to look up information online but it seems to be sparse and there is real confusion in terms of terminology. I have come to the conclusion that Neurocardiogenic Syncope and Neurally Mediated Syncope are the same as Neurally Mediated Hypotension. I believe that these aren't the same as Orthostatic Hypotension; I think NMH/NMS/NCS involve a drop in heart rate in addition to a drop in blood pressure, whereas OH is only a drop in blood pressure, and it seems OH is generally seen in older people. Orthostatic Intolerance is different again- that's an increase in symptoms when upright, frequently seen in CFS patients, but it's a symptom rather than a condition. Vasovagal Syncope refers to simple faints- NMH makes Vasovagal Syncope more likely/frequent. Postural/Positional (Orthostatic) Tachycardia Syndrome is a condition similar to NMH; it is also a form of dysautonomia, but the heart rate increases by 30 beats per minute on standing- it causes similar symptoms but whereas NMH can lead to fainting, POTS doesn't. Not sure if that clears anything up for anyone and I'm not 100% sure of the accuracy of any of that, but they are the conclusions I have come to. It would seem there are probably some inconsistencies between specialists to be honest.

I've been tired this week. I've had a few nice days regardless, but have had some rough ones too. My rib pain has eased off a little but my facial pain is twinge-ing a bit, so swings and roundabouts really.

Emotionally I haven't particularly struggled to come to terms with my NMH diagnosis. It feels positive to know that I have it, because it opens up more treatment options.

The 2.5 litre per day fluid intake is really difficult. It's still a struggle every day, but I'm doing it. I'm finding it hard to find foods to put salt on, but I'm trying to have at least 1 high-salt thing per day. Tilt training is really tough- it makes me feel really rough and makes my legs really painful, they shake and my knees threaten to give up, but I'm determined to persevere. My tilt training times seemed to be rising quite significantly early on but they're fluctuating a bit now. Considering my first time was 4 seconds, I'm quite pleased to have broken the 10 minute mark a couple of times in the last few days.

I have no idea whether I should have seen an effect from the increased fluids and salt yet (apart from increased trips to the bathroom); I'm still hopeful that these will help, and am (sort-of) looking forward to my compression tights arriving to see whether they help too. At least I know that there are further options to try if these things fail to improve my symptoms.

Tuesday, 22 July 2014

Tilt test and additional diagnoses: Neurally Mediated Hypotension and Vasovagal Syncope

A while ago I was seen by a consultant who suspected that I had Neurally Mediated Hypotension from my symptoms, but she said a tilt test was needed to confirm the diagnosis. An appointment came through and my mum and I headed off for me to have it done yesterday.

I got called through by my consultant and she explained that I would be wired up to monitoring equipment and we would see how things went- I would be stood up for 20minutes and then if I felt able to be stood longer I would be given a spray of GTN (to dilate blood vessels) and then stood for a further 15-20minutes. She asked whether I thought I'd manage the full 40minutes and whether I was happy to go ahead with the test- I said that I would see how things went, I couldn't predict how I would cope with it, but that I was happy to give it a try.

They pulled the curtains round and I lay on the tilt table, which just looked like a bed with a platform at the bottom. My feet were against the platform ready to be stood up. I was wired up to an ECG machine (just 4 leads) and blood pressure monitoring equipment by a lovely nurse. I was then strapped to the bed and a table was put across to rest my arm on once standing.

The nurse said to let her know if anything was digging in or if I was getting pain both because they wanted me to be as comfortable as possible and because pain would decrease the likelihood of the test working because it would cause my blood pressure to increase. She also said that I should let her know if I was experiencing any symptoms and that we wouldn't be able to chat once I was upright because me talking could affect the readings and it could also distract her and she needed to be watching the screen.

They then started monitoring with me lying down. There was some difficulty getting readings on one of the pieces of equipment (because I have poor circulation and cold hands) to start with, but once they were getting reliable readings on the monitor, they stood me up.

It's a peculiar sensation, because you're sort-of standing but you're supported by the bed and the straps. You're almost, but not completely, upright. I felt some symptoms to start with, my heart was pounding and I felt quite light-headed, nauseous and hot-and-cold-prickly, but then things eased off and waxed and waned.  The nurse checked with me that the straps and everything were ok. Once stood up I found it quite difficult to speak and could feel increasing pressure (presumably blood pooling) in my feet and legs. The nurse watched the screen intently throughout and made occasional notes and my consultant popped her head in a few times to check everything was going ok.

20 minutes arrived and the nurse said that she'd give me a spray of GTN under my tongue. She explained that it might feel uncomfortable in the base of my mouth, might make my heart race and there was a 1 in 20 chance of it causing a headache. She explained that it's only in the blood system for about 10 minutes, so it wouldn't have long-lasting effects. I agreed to go ahead and she said it didn't taste very nice and she was right. It's a very strong taste that sort of takes your breath away.. I can't really describe it, but it's not nice.

The nurse said not to be disheartened if we didn't get a positive result this time and that it's difficult to try to get the blood pressure to drop when it's not what it wants to do. But then she asked me a knowing 'are you starting to get an increase in symptoms now?'. I had been feeling pretty rough but wondered why she asked.... And then I knew. She had said previously that she'd probably see my blood pressure dropping before I felt myself going- she was right. Soon all I could manage was a few grunts in agreement that I wasn't feeling well, I'm fairly sure an alarm of some sort went off (though it could have been a tinnitus-type noise), and then I was out.

Passing out is a fairly indescribable feeling, but very familiar to me. The heat and cold washes over me, I feel ridiculously nauseous and acutely unwell and then I normally lose my sight and/or my ability to speak before losing consciousness.

The next thing I knew, I was coming round from a dream that I cannot recall, but remember was strange, to find about 4 people (including my consultant and the nurse) stood over me. I remember someone saying "Jessica, you're in the hospital", a feeling of confused panic, followed by some vague recollection of what was happening. I remember my consultant saying to wiggle my feet around to help me come round quicker, and someone else advising me to move my legs like I was on a bicycle; I remember just trying to work out where my legs were- I twitched around a bit (completely uncontrolled) and they seemed satisfied. I remember someone saying they would put a cold cloth on my head, and then being taken by surprise because I hadn't processed the words yet. I remember feeling totally disorientated and confused. I was offered a drink of water and caught the straw in my mouth but it took me a few seconds to work out how to suck and then a few more to work out how to swallow lying down. I was asked whether I had someone with me and their name, and just about managed to force out some one-syllable answers, but it was hard. I was still just trying to come round.

My mum was brought in to sit with me and I was still wide-eyed and fairly unresponsive, but was getting there. I had some more water which I managed better. I noticed for the first time that I was no longer strapped to the bed, the table for my arms was gone and my legs were raised on a big cushion- all changes made while I was totally out-of-it.

The nurse and my mum chatted briefly while I came round a bit more, and apparently I had looked like a rabbit in the headlights. I have a habit of fainting with my eyes open, it's apparently a bit freaky, but I don't have much choice in the matter.

The consultant came in and said that my blood pressure dropped dramatically which caused me to lose consciousness (and we were shown the traces). She said she was confident that I have Neurally Mediated Hypotension and resultant Vasovagal Syncope (fainting). She said that I'm getting blood pooling in my legs when I'm upright which is causing too little blood to get to my brain, heart and muscles which results in light-headedness and fainting, but is also probably a contributory factor to my fatigue, nausea and other symptoms.

I've been advised to squash the blood out of my muscles before standing up (eg. By crossing my legs), drink 2.5 litres of non-caffeinated fluid per day, increase salt intake, wear compression tights and do tilt training (stand 15cm away from a wall and lean against it until symptoms arise twice every day- the amount of time should increase with time).

None of this is going to exactly be easy, but if it helps to improve my symptoms then it will be totally worth it. There is no cure for Neurally Mediated Hypotension but there is symptomatic treatment. If the above methods don't work, I can be given medications, but they don't fix the underlying problem, they increase the blood pressure so that it drops from a greater level and therefore hopefully doesn't then drop low enough to cause symptoms.

After discussing with the consultant (which basically involved gentle grunts from me in what seemed like the right places- I was still pretty out-of-it), I was disconnected from all the monitoring equipment and started working towards sitting up, managed to get onto my scooter and left once I felt safe to sit up and scoot home.

I got something sugary to eat and a big drink in the hospital cafe and recovered quite well. I was extra-tired and needed to be flat a lot of the rest of the day but didn't feel too bad.

NMH is a form of dysautonomia, which means I've got a problem with my autonomic nervous system which controls everything that happens in the body automatically. The signals between my brain and my heart aren't working correctly.

It hasn't come as a huge surprise but you get so used to things coming back 'normal' with CFS, and you get so used to things being not only incurable but also untreatable, that I almost didn't dare believe someone would find an often-treatable problem that they think could be a significant contributory factor to my condition. I don't think I can come round to the idea that any new diagnosis is exactly 'good' but it sort of is this time because it's something major but potentially treatable, and treatable is most definitely good!!

PS I have had other appointments that I haven't updated about yet, but I will do. They went fine and there were no other new diagnoses, just advice. My main consultant did say he was happy for me to return to Uni for a few hours per week in September though which is exciting. Will explain more soon.


Thursday, 3 July 2014

03/07/14 update: health, Uni, medical leave

It's July. Already?! Eek. Where on earth did June, May, April, March and February go?! Wah! It would seem time in fact flies regardless of whether you are having fun..

I'm heading to my university city for a whole week soon to see a few doctors and sort out prescriptions and have my asthma review.. All exciting stuff. It'll be nice to see some friends who are still there though (some won't be around which is a shame). I'm not quite sure how I'm going to manage everything I've got planned, alongside serious challenges including getting washed and dressed, but I'll give it a go. What's the worst that can happen?! Ok, don't answer that actually..

How have things been since I last properly updated? Well, much the same really. I'm struggling to varying degrees with things I wish I still took for granted. I have been out and about a few times and have seen a friend though which has been nice.

My sleep schedule is still rather.. unique. I recently had to fill in a sleep diary for hospital which basically showed that my sleep is a mess (my analysis, not theirs). On average I got less than 6 and a half hours of sleep (range from 2hrs45 to 9hrs20) and it took an average of 200 mins (3hrs20) to fall asleep after lights out (range 2 hours to 5 hours 10 minutes). Yeah. Normally I sleep from about 2 until about 10, but it varies a lot.

Pain. Well, it hurts. I went to the cinema recently to see A Fault In Our Stars (good film, but tears are inevitable) and I remember them quoting 'pain demands to be felt'. So very true. 50mg Tramadol is now about as effective as swallowing a smartie and hoping it will help. My pregabalin (Lyrica) dose has now been increased to 600mg total per day.. The maximum dose. I'm not totally sure this is safe long-term as I'm only relatively light (and several doctors have pointed out to me that dosages should really be dependent on weight). It seems to be helping to some extent thankfully, but my pain levels are far from ideal. My ribs have been agony in particular- they never used to give me much grief, but the last few months my ribs have given me more grief than most other body parts.

On the subject of only being little, I'm significantly less little than I was- yay! I'm still about half a stone lighter than I was when I was well but I'm quite happy with how things are going. My weight is creeping up nicely. My ribs are still horribly bony yet my tummy is big and swollen (ok, partly IBS-related)- typical- you really should get to choose where the weight goes!

On a closely-related matter, my nausea is still ok. Not going to talk about this any further incase I jinx things ;)

Fatigue is still a nightmare. I still have to lie down a lot. Doing anything vaguely physical is pretty much a no-go. I can go out on my mobility scooter for a day (well, a few hours) and I'll be shattered but I can manage that ok (not every day, but some days). Bathing/showering and dressing and washing my hair (the absolute worst!) are much, much more of a challenge.

Walking is a real challenge. My balance seems even worse than it was..

My mood is variable, but it's been ok. The pain levels have been difficult to endure at times and that wears me down. I've also been stressing a bit at the idea of starting back at Uni, because things are far from how I'd hoped they'd be at this point, but it's exciting to think I'll hopefully be back with my friends and doing what I want to do. The lack of progress is frustrating. Going weeks at a time without seeing anyone your own age is strange. Relying on others and losing any sense of purpose is soul-destroying. But mostly I muddle along ok, and stay relatively happy. I enjoy the little things, and they keep me going.

My brain feels very mushy and I get mentally fatigued as well as physically which is frustrating. I can't always manage (and when I can, I often forget) to reply to long messages (sorry everyone currently waiting for replies) and I can't always manage to update my blog which is why posts are sometimes rather infrequent. This is a bit of a concern considering I'm hoping to return to university in September. I also get stuck on sounds sometimes (sss, lll, rrr, www) and can't remember specific words when I'm talking which is really annoying.

It's become clear to me that Interruption of studies/Medical leave(/being stuck at home chronically ill for any reason) is far from the 'easy option'. The challenges while struggling at Uni are different to those while on medical leave, but neither circumstance is an easier experience than the other. I dream of being back at Uni, but I dream of being back AND well- I don't miss the constant administrative nightmare of juggling everything medical with studying, I don't miss trying to do pieces of work or revision through flares, I don't miss never knowing how I was going to drag myself through the next day, I don't miss trying to get my screaming body through to the end of the week and spending the weekends recovering enough to face the same onslaught the next week. When I was struggling at Uni time off certainly appealed, but I definitely didn't hope for this reality- time out from Uni, with little you are able to do, too ill to go out regularly, and few friends around to visit, is isolating, depressing, mind-numbing and incredibly frustrating; nobody would 'wish they got to lie around all day like me' if they took into consideration the amount of pain I'm in, the lack of choice I have in the matter, the fact most daily tasks are a huge challenge or impossible for me most days or how horribly ill I constantly feel. When I was at Uni I wanted a holiday- but from Uni AND my illness, primarily the latter. Basically, I just want rid of this illness, then even the holiday wouldn't be necessary, although it would still be nice!

I had no choice in swapping from struggling at Uni to going on medical leave because I was too ill to stay studying, but I have a choice (to some extent) about swapping back and I still want to try and study again, despite the challenges. I'm going in with my eyes wide open- I know it's going to be hard- but it'll be worth it. I can't do the job I want without getting through my course first, so although it would be great to enjoy every second of my course, right now just getting through it is the aim. I love my course, and I just hope it doesn't feel like an ordeal this time round. I'm not a lot better than I was when I left, but I want to give it a try. I'm paying rent anyway, so I may as well try and live there! I won't do anything stupid though, there's lots that needs to be taken into consideration. If I don't feel able to meet the demands of my course, or my condition relapses, I will have to retreat.

This is all presuming I get the go-ahead from my consultant to resume my studies.. I think it's going to be a close call to be honest. I could obviously influence the decision hugely if I wanted to, but I want him to be able to make an accurate assessment of the situation and advise me accordingly. Balancing my health and my ambition isn't easy, so in a way I'd like someone else to be making the decision.

Going back would risk aggravating things, and could possibly trigger a further decline in my condition. I'm not sure I feel able to cope with an even greater level of illness and disability. Obviously that would be worst case scenario but it's perfectly possible..

Living with a chronic illness seems to involve constantly walking fine lines. It's often hard to know what to do and actions always have consequences. You can't always prioritise health, because you could end up mollycoddling your failing health and getting nowhere in life. Sometimes pushing boundaries to some extent is a positive thing. Pushing them too far, however, risks disaster. You do have to know when to step away but at some point you have to try dipping your toe back in the water again, but knowing when it's safe to do so isn't always easy.