Archive for the 'FeelingIll' Category

POTS Negative, Possible Other OI – Postural High Blood Pressure

So my Lovely GP administered a proper POTS test in her office as promised for me at the end of her surgery so we had enough time. My ECG hadn’t shown anything abnormal, other than having a very high heart rate (about 117-122bpm resting sitting down).

I was careful not to over exert in the morning before we arrived so that my resting heart rate wouldn’t be too bonkers to begin with and the increase all the more dramatic.

Except when we did the test my heart rate did not spike as dramatically as I had thought it would. It raised from a resting rate of around 107bpm to 116bpm standing after a few minutes and then there it stayed for the next 10 minutes. My heart rate was consistently high, but not high enough or a large enough increase in bpm to confirm a POTS diagnosis.

11oct2007 swirly headWhat did happen however was that my blood pressure climbed from lying resting to standing. And it continued to climb over the next 15 minutes. It’s a little high when resting for my age but once I was standing it was a cause for concern and further investigation. My GP took bloods there and then, then requested they be repeated once the results came in.

I’m going to have a 24 hour blood pressure monitor from the surgery next week when they’ll also take the repeat bloods for testing.  I’m trying to work out a timetable for the day so that I can get a variety of measurements as it goes off every 30 minutes during the day and every hour while you sleep.  So I’ll need to have some reading sitting relaxed and then for others begin standing or moving around a few minutes before the monitor goes off.  Otherwise I’ll only show fairly normal readings for the sitting down and sleeping parts, when it’s being upright that seems to make it climb.

I repeated the POTS test using my home blood pressure monitor the day after I saw my doctor (BP monitor very similar to the doctors) and I pretty much replicated the results of the previous day.  My heart rate did climb bit only to around 115bpm over 10 minutes of standing still, while my blood pressure rose and then after 3 minutes of sitting back down my blood pressure dipped.

RESTING  Start of test:   BP 128/96, Pulse 96

STANDING 3 mins:          BP 130/92, Pulse 106

STANDING 10 mins:       BP 132/95, Pulse 115

RESTING 3 mins:              BP 112/84, Pulse 90

Out of interest one weary evening I measured my blood pressure having climbed the stairs at bedtime. I felt shattered, my heart was thumping inmy chest (which it doesn’t always do when my HR is fast), I felt headachey and light headed. When I measured my pulse it was 124bpm but my blood pressure was up to 137/99 compared to 87bpm and 127/87 sitting on the sofa.

Postural Hypertension or Orthostotic Hypertension (high blood pressure on standing up) does exist but is even less well known that Postural Hypotension (low blood pressure on standing up) which is not particularly well known itself!

Unless my blood tests reveal an possible underlying cause, or perhaps even if they do, a referral to a cardiologist is likely the next step. Unfortunately my Lovely GP doesn’t know much about local cardiologists so doesn’t have someone lovely in mind she can send me to so it might be a bit of pot luck. If the cause is OI related will I find a cardiologist who knows about it or is willing to be open minded?

Dr Bell defines 5 kinds of Orthostotic Intolerance

There are five separate abnormalities than can occur during quiet standing:

1. Orthostatic systolic hypotension where the upper number (systolic) blood pressure drops. The normal person will not drop BP more than 20 mmHg on standing up. One patient I follow with CFS had a normal BP lying down (100/60) but it fell to 60/0 on standing. No wonder she was unable to stand up – a blood pressure that low is really unable to circulate blood to the brain. In any ICU [intensive care unit] they would panic seeing a BP like that. And she was turned down for disability because she probably was a hypochondriac.

2. POTS stands for postural orthostatic tachycardia syndrome. A healthy person will not change their heart rate standing up for an hour. In a person with POTS, the heart rate increases 28 beats per minute (bpm). Some experts say the heart rate should exceed 120 bpm to have POTS. But either way, this increase occurs frequently in CFS. I think the increase in heart rate is linked to the decrease in blood volume. (Orthostatic intolerance has been called Idiopathic hypovolemia in the past.)

3. Orthostatic narrowing of the pulse pressure. The pulse pressure is the difference between the lower number of the BP from the higher number. For example, a normal person with a BP of 100/60 would have a pulse pressure of 40. It is actually the difference between the upper and lower number of the BP that circulates blood. If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out.

4. Orthostatic diastolic hypertension. The lower number of the BP often reflects the systemic resistance, and while standing many persons with OI and CFS will raise their lower BP number (diastolic) in an attempt to push blood up to the brain. Sometimes this is dramatic. One patient being followed with CFS had a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself…

5. Orthostatic diastolic hypotension. This represents a fall in the lower number of the BP, and seems to be the least frequent abnormality in patients with CFS I have tested.

My variations in BP are not as dramatic as the patient Dr Bell talks about but they’re enough to give me concerns. Especially with an illness where many experts already believe that the heart is under a lot of strain.

20080224_selfIt might account for why since I’ve been taking LDN I’ve felt I have more energy but haven’t been able to maximise on that – probably because everytime I am on my feet for longer than a few minutes my BP is rising and my heart rate is too fast (I’ve measured my HR on the go up to 160bpm just doing very light physical activity like climbing a few steps slowly).

Of course the high heart rate could be as my Lovely GP suggests due to enforced sedentary lifestyle and a bit of deconditioning but it doesn’t feel like it to me. I’ve stayed relatively mobile and over the last year tried to gently increase activity but keep hitting brick walls that I feel are down to tachycardia.  I can’t prove it because I can’t exercise my way past my high HR :/ And of course the high BP could have an underlying cause not yet diagnosed but the postural/OI thing is somewhat intriguing.

Hopefully the 24 hour monitor will demonstrate some juicy results.

This is a good research paper on postural high blood pressure (one of the few I’ve found) in PDF about Orthostatic hypertension: when pressor reflexes overcompensate by Joshua Fessel and David Robertson – or here is a web page version of the article

Since I’ve not presented in the clincial test with classic POTS  I’ve sometimes felt in danger of other ME/CFS people saying I haven’t got real ME because I don’t have POTS or a drop in blood pressure like Orthostotic Hypoptension. These are classic signs that typically accompany ME/CFS. But Dr Bell’s article re-assures me that there are different forms of OI and a rise in BP is as valid in an ANS autonomic sense as a drop in BP or big HR increase like POTS.  Standing up sure can have some odd effects on ME/CFS people.

Noise Brain Explosion

As some of you on Facebook might have seen I had an intense noise sensitivity reaction yesterday.  There were sudden bursts of squealing grinding drilling from workmen next door – and by that I mean effectively in the rooms next to our bedroom and lounge (pretty much where I am 98% of the time).

I haven’t suffered badly from noise sensitivity for a while now.  Sure some things still bug me and some things rob me of all concentration and focus but on the whole it’s been pretty stable.  I can even have the telly on and read at the same time which is amazing compared to a couple of years ago.

So not only did I react badly to the noise but I was shocked and scared by the extreme reaction. It seems ridiculous but I was crying and shaking and absolutely desperate to get away from the noise.  It didn’t help that I was just at the point of doing something that used my brain and my computer was on a go slow so I was frustrated too plus tired/weary from poor sleep/IBS flare earlier in the week.

I sat at the top of the stairs with my ear defenders on (still able to hear the noise but somewhat muffled) trying to finish the task I had started, shaking and snuffling.  The stairs is the furthest point away from our neighbours side.  What I really wanted was to be able to go out and escape.  So of course that makes it worse because I can’t go anywhere.  I am stuck and suddenly feel the weight of that.

The noise didn’t last very long and there were just a few bursts through the early afternoon.  My neighbours are wonderful and usually warn me about work but I guess as it was the middle of the day thought it would be ok or forgot this time.  And it’s not their fault.  How could they know my ME would make me react so badly when I couldn’t have predicted it?  And how can you fit windows without making noise?  No it’s the ME that has me miffed.

I felt like a wild animal startled by something loud and alien.  I wasn’t in control of that intense reaction and it left me exhausted.  My throat was sore and my glands were throbbing which is what I used to experience with the slightest stress when my ME was a bit worse.  I think this combined with other clues has to indicate that my ME is worse at the moment than I’ve realised.  Usually it’s fatigue and brain fog that are my first indicators of a flare or crash but this time it’s other things. Perhaps that shift is due to LDN which has helped the fatigue and the brain fog. Though I did struggle to read a book last night that I was skipping through the day before so cognitives are a bit mushed.

There was I am sure a good reason why I started to blog about this but honestly I’ve forgotten.  Completely gone. Brain exploded and sensible thoughts have hidden away in dark corners.

Today, with continued banging, tapping and electric tool noises I’ve had my MP3 earphones in with ear defenders over the top.  It’s been quite effective but the ear defenders make my head squashed and hurty after a while.  And there’s only so much music I can take in my ears no matter how lovely and calming it may be.  Now the sun is out I’m wishing I could just go out even more.  Especially as I think my neighbours went out for the day to avoid the noise.  I don’t often feel like I’m imprisoned in my home but today I kind of do.  Hey it’s only a day or so.  And it is the exception to the norm.  So I shall be grateful that the norm is so good and just suck it up.

Low Energy Reserves

 

disability shadow

I’ve been on low energy reserves for weeks now and it’s starting to get a bit frustrating.  I have work to do and clients waiting.  I am doing little bits of things – watering my plants, feeding my tomato plant, a bit of baking – but it’s very wearing very quickly.

I tried to do some painting a couple of weeks back, thinking perhaps I was low motivation not low energy.  I got a little bit done but soon I was messing up really badly and realised just how exhausted I was.  Still not sure how I’m going to fix the mistake I made but I’ve been too knackered to think about seriously.

Paul says I shouldn’t underestimate what effect our holiday had on me as we did stuff everyday – more stuff than I had done in at least 6 months before.  Plus the hot weather has an effect.  Plus hayfever does too for me.  But I feel like a bit of a failure for being so tired day after day and not being able to kick the exhaustion.

beside the seaside

I still maintain that the LDN is helping.  Although it’s hard on days like these to see that is when I feel so wiped.  But I suspect without the LDN things would be very bad indeed.

Really I should be used to going with the flow on these things.  No point trying to force it when the body says no.  You just lose more by pushing it.  But I feel riddled with ME and I don’t like it.  Goes to show that the LDN really has been boosting me more than I realised.

It could be this latest downslide is due to being back on eating wheat, despite testing negative for celiac.  When I started eating wheat everyday again in prep for the blood test I started to feel sluggish.  I don’t know if my body got past that or whether sluggish became part of my normal everyday parameters.

So I have to kick wheat again.  Hard now I’m enjoying all that wheat has to offer.  But if it is contributing to the knackeredness there’s no question of the benefit of sacrficing lovely tastes.

i'm reading grave sight

I’ve started reading again.  I wonder if the reading is contributing to the exhaustion.  Small things can add up and even mental stimulation is exertion.  But I do find even when the body feels wiped at the moment I can read a bit of an easy fiction book.  So it’s hard to know if that it turn is making me knackered or a welcome distraction from it.

my garden 'relaxer'

What I do have is my chair for the garden in which I can recline.  I can be lying down (just about) and supported and secure at last.  I decided to look at it as an investment of disability equipment and paid a bit extra to get a better quality one with a super squashy cushion and sturdy frame.

The only problem is I’m struggling to give in to relaxing.  A lot of the time all I want to do is eat or sleep.  So my auto response is to get busy to prevent me from sleeping in the daytime (something programmed into me when I was very young I think and so hard to break).  As a result I find myself wiped and restless at the same time.  I need to relax but I want to pace.  Of all the times it should be easy to let go and nap *this* should be the easiest time to do it.  Sigh.

K-nackered

It might be a while since I last posted but it doesn’t feel like much has happened.  Or has it?

I stayed up all night to watch the UK election results come in – and I’m still tired.

20100506 4am election night

Made Paul a birthday card and celebrated with his family in South Wales for a long weekend.

paul birthday popup

Blogged for International ME/CFS Awareness and collated a list of awareness blog posts at http://meaware.wordpress.com

20100512 me outside

Did some artwork in Journal #4 of the Creative for a Second travelling  journal project.

Spin ME 02

Tried to start eating more healthily (mainly lots more fruit), despite having discovered a love of baking and having made a few batches of biscuits (one for us, one for neighbours and one for my brother/sis-in-law-to-be).  And despite deciding in the last week to reintroduce wheat and gluten to my diet with the intention of taking celiac blood test in 6-8 weeks (which is leaving me bloated, gassy, knackered and feeling rather rough).

20100522 peaches socks and fly

Started a new commissioned painting (a secret for now) and done more work on the web site illustrations I have yet to complete for another client.

secret commission double r

Tried to spend some time outdoors in the fresh air getting some proper daylight and if possible warming my bones.  I also got 2 tomato plants and a broad bean plant from my sis-in-law-to-be which I am trying to tend to without much experience in these things.

me and fly

Also I’ve started reading books again, mainly at bedtime. I’ve finished a John Grisham, read Sh!t My Dad Says (very short book) and am starting on the first on the True Blood books as I loved the telly series.

Plus 1 haircut (at home with mobile hairdresser), 1 viewing of a house, 4 cleaning sessions and 1 gardening session by sis-in-law-to-be, 3 visits from parents, 1 new bottle of LDN chased/received and several early nights. Inbetween that lots of surfing, sleeping and feeling a bit crappy.

Paul, along with my brother and sis-in-law-to-be, bravely took the clutter mountain to a car boot sale last weekend and fabulously they made us £150.  I didn’t go along as it would have been too much for me.  We have about half the clutter left but that can start to go to the charity shop(s) bit by bit.

I still feel confident that LDN is helping despite having felt consistently tired and generally crappy especially this last week.  I’m also feeling fairly certain that gluten and/or wheat makes me feel pretty yucky when I have it everyday. 

At the weekend sis-in-law-to-be is coming over to watch Eurovision and poke fun at it with us. 

I’m also hoping to get out to one of the good farm shops with Paul so I can buy some jelly to hopefully stop my yearning to make my own (too much effort for me right now).  I’m very keen to taste rosehips and honeysuckle, but any kind of jelly would be good especially fruits I can’t really eat due to my IBS.

I’d also like a trip to the garden centre to buy canes to support my broad bean (being optimistic it will grow enough to need support!).  I might even buy some pretty plants for the garden if I can make my mind up as I am a bit clueless in this regard but have a willingness for some colour and to help the bees.

Oh and of course I must get some rest. Hmmm. Yes, rest.

Lurching, Lumbering & Surviving

I’m still struggling with the lingering effects of this cold/virus/bug.  I’ve been in the can’t-quite-shake-it-off stage for 2 weeks now I think. Sigh.

Managed to get a  bit of work done but that, combined possibly with the LDN leaving me a bit low energy, is impacting on my ability to DO.

Good news is that now I have my DLA award in place I can afford to pay my brother’s fiance (the clutter busting angel) to do a couple of hours cleaning each week.  She did her first session this week and she’s made a big difference to a lot of grime and dirt.  I expect it will take a few weeks before she’s gotten throught the backlog and is able to get into a routine where she can keep on top of things.  But it’s already loads better.

It’s Easter weekend, meaning a long weekend off work for Growler.  Seeing as he is still struggling to shake off The Bug too the plan is for lots of lazing and chocolate. 

I did manage to implement my plan to get my photos taken for my driving licence renewal. Than god they gve me nearly 2 months to organise myself!

Yesterday I had an assisted bath so today I could look half presentable. 

Growler drove me to the train station where they have a photo booth.
20100402 lichfield train station lens flare

Crazy lens flare and distortion from my mobile phone!

Got my pics taken. Urgh passport photos!

20100402 photo booth pics

A quick stop off by Growler at the supermarket for supplies while I waited in the car.

20100402 waitrose disabed parking

Then we drove back past a couple of houses which are up for rent – one we are waiting to do a viewing on and the other we’re not sure about as the area is not so great.  Nice little house but still not sure about the area having driven around a bit.

Nice to be out and have a chance of view. And did I mention the sun came out?  Lovely.

Now I’m knackered and hoping to  have a need to move from the sofa for most of the rest of today!

Feeling Crappy In A Good Way?

 I read an interesting personal experience about LDN with ME/CFS on a forum:

As this drug modulates the immune system, after a few days at a higher dose the immune system usually finds some neglected jobs to do (like working on low-grade infections) and I feel a bit sick till it clears up the mess. So I am now waiting for the “what next?”

But, I like this drug and so far so good.

Sushi

http://forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&highlight=Naltrexone

This US focused discussion thread has a lot of activity many reporting good outcomes with LDN, some finding it not suitable for them.

Sushi goes on to say:

Each time I’ve raised the dose–and I am creeping up much more slowly than most–I have noticed these effects for a few days, then my immune system (which has been severely hypoactive) attacks something–usually for me low grade sinus and ear infections that have been there for years–and I feel like crap until that stage of the clean-up job is done.

My hope (and some others have reported) that eventually when I get up to the targeted dose, the immune system will clean up all the back-log and the “feel-normal” effects will become more stable.

Sushi

She’s now at 4.5mg having increased the dose very very slowly over a long period and no longer feeling ill effects.

I had wondered if it was possible that my recent lingering headache, tummy trouble & feeling like I have a virus (without cold symptoms) could be due to LDN boosting my immune response and maybe finding nasty things in my body to fight.  This personal experience of the user on this forum would seem to suggest it’s possible.  Another user reports feeling very similar to me – improved sleep, less pain and more energy but sort of feeling fluey and run down then not knowing if she overdid it with the new energy or if it’s something to do with the way LDN works.  Yet another user is reporting a mild headache and tummy ache.

I also recall that when I was on 2ml dose previously I felt great for a week to 10 days then felt sort of run down and listless for a couple of weeks (when I then upped the dose and triggered bad side effects).  So I might of sort of been here before.  What’s going to be interesting is what happens in the next couple of weeks – if the yuck feelings go, stay the same or worsen.

I’ve held off voicing the idea that maybe LDN is sorting out my immune system and then fighting off bits of infection as it goes – because it falls into that idea with many therapies for ME/CFS that you have to feel worse before you feel better.  Then you get the counter argument that how do you know the feeling worse isn’t actually a poisioning of the system rather than dejunking it?

There’s a lot of knowledgeable people over on that forum thread.  They are talking about scientific stuff I can’t compute like a connection for one user with rapid weight loss using LDN:

One of the things LDN does is lower TH17. Now TH17 is important for gut immunity.

It’s my hypothesis that in those of us with major yeast/dysbiosis issues the LDN causes malabsorption. My advice would be to stop the LDN for a few weeks (you have nothing to lose) until your weight has come back up to normal.

I’m telling you this because a) I might have a major yeast infection (but not the weight loss) and b) this isn’t like when I tried the garlic tablets to cure ME/CFS there’s some serious scientific stuff and research going on that I don’t fully understand but which I sort of trust.

Ironically Low Dose Naltrexone’s shorter term blockade of the endorphin receptors results in increased endorphin levels in the brain. This occurs because LDN’s blockage of these receptors tricks the brain into thinking endorphin levels are low causing it to compensate by increasing endorphin levels.  Endorphins, which are known as ‘natural pain relievers’, are produced by the HPA axis during exercise, excitement, pain, sexual activity, meditation, acupuncture, massage therapy and by eating spicy foods and chocolate. (The “phin” in endorphin is a take off of morphine). The ‘runners high’ is believed produced by high endorphin levels in the brain after extended exercise.

Endorphins effect the immune system by enhancing natural killer cell response and reducing B-cell (antibody) activity and LDN’s effectiveness is being tested in several autoimmune diseases.

LDN appears to effect the functioning of the regulatory immune cells in the central nervous system called microglial cells. Upon activation by infection or cell damage micoglial cells produce pro-inflammatory cytokines, reactive oxygen species (free radicals) and nitric oxide. Microglial cells may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection. Some researchers believe that microglial cells are chronically turned on in ME/CFS and fibromyalgia. LDN appears to block a receptor on the microglial cells thus inhibiting their activation.

http://www.aboutmecfs.org/Trt/LDN.aspx

Ummm ok then 🙂 Sounds good to me though!

I don’t have answers  I’m just sharing what I’m uncovering and piecing together as I go on this journey.  And this is just another possible reason I’m feeling crappy at the moment.  I may know more with time.

Wearisome

Five days on and I’m still weary with a background headache verging on migraine threat, a very stiff, painful neck and an uncooperative stomach.  I thought I had to choose between feeling hungry or feeling sick (having eaten) but it seems I can now do both at the same time. Oh joy.

Fingers crossed it’s a virus, or unusually lingering payback and not a step backwards or caused by LDN.  Trying to remain optimistic & wait for this to pass.

Of course it doesn’t help that I have a couple of clients waiting for work and that now is the time I could do with making a bit of money to keep me ticking over.  Last night I had a (typically weird) dream but was carrying a large painting around with me everywhere I went.  I needed to finish it but stuff kept getting in the way. Pretty clear what that dream was about.

Yesterday I idly looked at the blog posts from the first month of posting here, which was back in May 2007.  Although ill to a larger or lesser degree for 18 months, I had been diagnosed for 6 months then and off work on sick leave for as long.  I was coming to terms with crushing debilitating chronic illness.  I do see some improvement in how I am day to day from then to now. Improvement is good and I am better able to cope with living life chronically.  But I want more. Of course I want more.

Deep down I now know I’ve always had the feeling that this, all of this, is temporary.  That one day I will feel better.  Maybe not forever but that some level of remission will come.  Even to get to the level of ill I was in 2006 (ill but not this ill) I’d consider remission.  I’d consider relief.  Here I am nearly 3 years after starting this blog with only a tiny improvement and a lot more knowledge.  I’m living with the idea that this might be as good as it gets.

Back in May 2007 I was talking about the massive adjustment not only I, but my family and friends were having to make too.  The losses and grieving of what may never be.  I’m realising for the last 3 years those things have indeed never been and that adjustment has become somewhat more permanent.

I still have that belief that I’ll get better, I’ll recover some day to day function again.  But there’s a fear in my stomach because I don’t know what the catalyst to that recovery is – other than doing the best I can and waiting to see.  Waiting, waiting, waiting for how many more years?

When I got diagnosed I said to Growler “I’m going to beat this”.  Back then I didn’t fully understand the nature of the beast I was setting out to beat and in many ways learning to accept my illness and limitations whilst maintaining hope of recovery seems in many ways to be the definition of beating ME/CFS.  Will I always be this shattered and messed up?  No-one can tell me for sure.

So I’m getting a mental picture of the porta-cabins at my old school.  Portable classrooms to fill a temporary gap that have stood so long moss grows up the sides, the paint starts to peel and no-one can remember what the fields looked like before the porta-cabins arrived.  Everyone accepts them as part of the school but they could still get loaded onto the back of a lorry tomorrow if made to. 

ME/CFS is growing moss up the sides.  This level of ill is temporary somehow but it’s been with me so long it’s my familiar day to day and it’s hard to know what life was like without it.  I can’t just shift it because I feel like it – I need a crane and a lorry, or a team of people with hammers, or someone to burn it to the ground – but no-one can tell me or sure the best way to get rid of it or if it will stay gone.  Well that prota-cabin analogy works to a certain degree anyway 😉

I realise of course that this has all come into focus again because I’m on a new medication which I hoped (hope) might be the catalyst to improvement and perhaps recovery.  And here I am in a big old crash which I just want to say a lot of swear words about.  No quick fix for me.  I also know that this will pass and I just have to be patient (insert more swear words). 

Some days I just want to be free from it.

There’s nothing like a crash to make you look for answers and find more questions.


Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.