Seizures in Sleep?

For the last 4 years I have not slept next to somebody. What one doesn't realise is that not sleeping next to another person means you have pretty much no idea what you do while you sleep. Recently I was dragged away to visit my sister as my mum wanted the company. There was only a double room, so we ended up sharing a bed together. Oh my...

... apparently something very odd occurs during my sleep... I seem to have some kind of seizure. It happened two nights while I was asleep. I am completely unaware of the whole thing. I don't snore (which I knew as I have been recording myself during my sleep using a sleep app). Th funny thing is, the sleep app was recording me in the night for apparent snoring, but whenever I listened to the sound recordings, all I could hear was masses of rustling noises as if someone was moving around loads, which I never really could make sense of. Now I am thinking - is that me jerking around during these episodes I seem to be having? It would make sense of the sound recordings if it were. It would also make sense if I am doing this because I have been really struggling morning-wise for some years and the doctors agreed it's not normal; however, they never followed through on the sleep study which one doctor advised another doctor I should have. They thought I might have sleep apnea or something of that nature. I wake up feeling appalling - as if I have gone 10 rounds in the boxing ring, with migraines/headaches, lightheadedness and nausea etc. Now I am wondering, if I can tackle this issue, maybe I would feel a bit better during the day and also be able to function more normally in the morning (i.e. get up without this mammoth struggle and actually be present in the moment rather than off on another planet in a distant galaxy far over there - which is where my morning brain likes to reside).

Took this picture while away of: the beautiful Hampshire Downs

I started doing some research (as usual) and it seems that nocturnal seizures are known to occur in some people with M.E. Hmmm... who knew? Anyway, aside from taking a pharmaceutical (which I would have to find a doctor willing to prescribe), I can try taking L-Theanine. I was taking it before for a while, but when it ran out, I never bought any more. It's meant to be effective in helping prevent these seizure issues, so I shall have to try it again and see how I feel in the daytime.

Poor Millie (my dog)... I think I have probably been driving her insane at night with all this movement (she sleeps in really late these days and also seems tired all day). The irony being that my dog has epilepsy and has woken me in the night to have a seizure... so we're somewhat even.

Argh! Good and Bad

Things continue to be quite difficult. I seem to be going through some kind of personal hell, but there is light at the end of the tunnel...

To cut a long story short, I was suffering that much that I thought I would finally just up the LDN to the 4.5mg. The rationale being: seeing as I already felt so awful, the side effects of my dose increase would be lost in the general awfulness (no time like the present eh?). So I did it. I took about a week to get over the LDN herx (which I am surprised I still got this far along the dose increase), and I am now feeling the better effects of it.

The better effects are:

I managed to do a little sewing yesterday and this morning (on the sewing machine - pictured below). I managed to play Words with Friends (I gave up last week and resigned or whatever it is you do... as my brain was just stuck) and win (by a few points). My sleep has improved massively... in fact this is the biggest difference!!! It's exciting. The time I am getting to sleep has been swinging round quite dramatically (as in quickly) from 2-3 a.m. to 1 a.m.-ish. When I get to sleep, I am dreaming! Dreaming big dreams... that I remember some of the next morning. I also feel as if I am sleeping rather than being in this weird state of semi-consciousness that I call sleep and others would call dozing.

The not so good (room for improvement):

I have been spending every day in bed whereas normally I try to be downstairs for a big chunk and go back to bed around 5-ish. This started before LDN and I am hoping it might go away. Recently on the good days I have manged 1 to 2 hours spread out over the day downstairs eating my meals and doing a wee bit of something (can't even think/remember what), and on the bad days I haven't managed that and actually gave in (probably shouldn't put it that way) and just lay there. I think it's hard not to start to feel down and panicky when this happens. Part of my panick and depressive feelings have been hormonal and part have been just pure fed-up-ness. I sat in bed crying - something I never do - because I am so fed up with dealing with my body and the horrid pain and nausea. I have been really nauseous... and just when I think it's gone, it comes back. I have been through periods of chronic nausea before, so it's not a new thing... just it seems to come in episodes of weeks or months and then disappear for a long time. I don't really know what that is. It seems to happen when I feel worse and have a decreased ability level. Not that my body loses any weight... but that's a whole other issue.

Anyway, I have decided, seeing as this is how my body wants to be right now, I am not going to push it. I am reining back in and giving myself this extra bed time and not making any social commitments even though I promised quite a few people I would see them in November. Oops. I feel A LOT better horizontalish (legs up) than I do standing up or sitting up. It's almost like going back to Pacing 101. I do think this also probably has to do with the autonomic issues as my body's urge to faint/blackout seems to be on a high at the moment and of course when I am more horizontal it's not causing me that issue, which feels a relief.

I'm not going to lie, I've been quite ill...

I am loathe to write this, but at the same time, I feel I should.

While I have made progress in certain areas of my ill health, I am not going to lie... I am still not doing well overall... I am grateful for any gains and small mercies, but if I am honest, over the past few months I have been on-and-off quite unwell. I am not bedbound all the time, but I am having long periods of being bound to my bed and just getting up to go to the loo. Even after all these years I find it hard to always know why... sometimes it's obvious: I did this activity/thing, and the PEM is what occurs later... but sometimes it seems as if I am doing all the right things.pacing well and still suffering. It's hard to know what to do then... because you don't know why, so you can't formulate a plan of attack. I know it's bad when I start fantasising about mobility scooters and those wheely things that have a seat on them that mainly elderly people use.

I see now it's called a: Rollator. This image comes from:
http://www.completecareshop.co.uk/index.html

Being excited by those things also depresses me as it's further away from my goals in life and I feel as if having to rely on them is going backwards towards the wheelchair. I want to be going forwards towards fitness!! I am also scared about deconditioning.

I know for a fact that winter does not suit me - lower light levels (and lower Vitamin D), the cold and damp, all have an impact. I try to remember to use the SAD light when I can tolerate it and I am taking high dose Vitamin D daily.  I have also added in a sublingual Vitamin B complex. The cold and damp I cannot really change except to try and keep warm and to wear my gloves when going into cold situations to stop my hands flaring up.

I also think I have been under quite a lot of stress and pressure over the past few months - for various reasons. Certainly setting up business #1, which as I mentioned before is taking ages, has been taking up energy and I think that I am not pacing myself well enough there. I am either doing it or doing nothing at all... at the moment I am in limbo because I need to get a workstation and the one I wanted suddenly went up in price by about £80! I feel guilty when I don't do work at my business as I need to develop my own income stream and become more independent. I also feel frustrated because I actually want to do it and get it going... I know I can be useful and good at something, but I am always fighting these limitations and sometimes on top I end up fighting viral/bacterial infections or the allergies... and that just makes everything 10 times harder/worse.

Overall, if I am honest with myself, I have been doing more this year and not really realising or properly allowing for it, so then I pay for it by being 'unable' or going backwards or progessively getting sicker. I think what frustrates me the most is that on the LDN, I have had some periods where I felt different - in a way that I haven't felt before... since being sick - and because of that, I took it as a sign I could do all these things... and overall that feeling has now gone. Being a glass half full person, I do acknowledge that at least the fact I could feel like that is a sign of hope... that my body could one day be somewhat better or even have some kind of miraculous 90% cure or 100% cure (I did read about this happening to someone who had been sick with M.E. for 19 years).

I have one more increase of LDN to do, so I am now thinking that I probably should do that, as if it does make me feel awful, then at least it goes along with my current awfulness and I probably won't notice it as much as I would if I were in a good patch. I am hoping this increase might kick start my system again. My concern being that if it does, if I am at the maximum what happens if this situation occurs again (which I suspect it might). I did read of a lady with M.E. who split her dose of LDN when this happened and it worked. So I am going to look into that more and see if that might be an option for me.

The gluten free diet is also having a major impact - now if I eat gluten, I am getting a clear (and nasty) reaction, which in one way is scary and unpleasant, but in another way makes me feel that at least sticking to this might bring about some gut healing and help me overall. It is quite hard to be GF when I do get to go out - and I was unwittingly glutened which made me really ill... so now I am figuring out how to be even more careful. It's far easier to cope with the food element at home (so there is some benefit to being stuck at home most of the time).

Canary in a Coal Mine, Jennifer Brea & a Great M.E. Article.

The other day a lady I met online, who also has chronic illnesses, alerted me to this:

http://www.canaryinacoalminefilm.com/

So far, so good - they are raising money and I hope this film raises a lot of awareness and maybe actually instigates some change.

A view from when we took the boat out - it was the last really nice warm day of this year

Anyway, Jennifer Brea, who had the idea to create this film, was interviewed and helped to create the best article I have ever read on M.E.:

http://blog.ted.com/2013/10/25/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/

This is really a good article to read if you have M.E., and to get your nearest and dearest to read if they don't understand. Reading it made me feel release; sometimes being able to read someone else putting into words what you feel or think is so cathartic. I am finding it hard to write these days... which is ironic for someone who used to be a freelance writer! I just can't seem to get the thoughts out properly, so I shall sign off for now.

Before I go - we had a storm on Sunday/Monday and had no power for a long time... from early Monday morning through into Tuesday morning... so I am behind on work, but the good news is, I slept a lot and caught up on sleep where I'd been having insomnia. Yay!

An Update: Food Allergies & Intolerances, Mast Cell Issues and Earning Money With ME/CFS and Other Diseases

I've been away for a while because I have:

a. been busy
b. not felt like writing/blogging
c. not had the energy to do 'b' because of 'a'

I had an online friend come to stay for a couple of weeks from abroad. It was lovely to meet her and spend time getting to know her in person (we have talked A LOT online), but it was really difficult for me to host someone and I am still recovering. I was worried about this, but then I kinda threw caution to the wind, so to speak.

I have been really battling increased pain a lot recently. I am trying hard not to rely on painkillers and using other methods to help me. I also have been struggling to sleep well, which doesn't help. Anyway, here's my update:

Food Allergies and Intolerances

After I wrote my last post, I continued with the elmination diet. I found that in addition to reacting to the allium family (onion, garlic, leek, chives etc), I also can add broccoli, dark chocolate, and possibly lentils to my list. I need to retest lentils at some point. As I was a fan of broccoli, I was eating it a lot - and thus it was affecting a lot of my main meals. I am supposedly also sensitive to cauliflower (from previous testing), but I hardly eat it anyway so I guess it's one of those things you don't notice easily. With dark chocolate, I again avoid it, but if a wee bit is in something, I can get away with it.

The allium family are my main allegen. I think the problem was that although I knew this, I was not being careful enough about it. I was not avoiding garlic, as I believed onion issues were worse (which they were), but somehow I also seem to have become very reactive to the rest of that family. For example, I made a vegetable/vegan stew and used a tiny (and I mean tiny) amount of vegan stock powder in the overall dish. As soon as I ate it, I started reacting. No more veggie stock for me. Finding stock that does not have onion in it is so difficult...

Eating no onion and no garlic is a nightmare. When eating out or buying a ready made item from Marks and Spencer, everything has some of one of these things in it - even if no onion or garlic, sometimes people put chives in things or spring onion. I went around M&S with my mum and managed to find ONE ready made item I could eat - a salad with smoked mackerel in it. Everything else had onion or garlic in it! The result of this is that I have to eat very plainly and cook a lot from scratch. The problem with that is that I am not well enough to cook from scratch all the time. If I do spend my precious energy on cooking, then I can't get on with anything else as it takes all my energy for that day. As a result, I have found my business life is suffering. I need to use all my energy to focus on getting on with my work and setting up 2 businesses.

The gluten is also an issue for me, but not in an allergy way. It affects endometriosis symptoms I have - very badly. So I am still trialling gluten free to see if in the long term it helps me to control those symptoms. At the moment it's made them far more bearable, although I am still having to take medication and use a TENS machine to help me cope with them... before I was not even able to get them under control at all so to have this improvement feels amazing.

Mast Cell Issues

One of the things I have found incredibly useful from all my mast cell research is finding out that there is a children's liquid form of Benadryl. I know this might be obvious to some people, but as I don't have any little people in my life, I was unaware. The premise behind using it as an adult is that if you are exposed to an allergen you can quickly take it and it gets to work straight away as it is a liquid form. I bought two bottles and now keep one in my bag at all times when I go out. So far I have used it about 4 times. One example being: I was eating out at a restaurant and I started to feel the allergy rearing up, when I examined my food really carefully, I noticed what I thought was parsley stalk chopped up into tiny bits was actually chives! I immediately took a dose of Benadryl. Although I still don't feel great with taking the Benadryl (as it is drowsy inducing), it really dampens the response down so that I can still function enough without collapsing. 


As part of Mast Cell Activation treatment one also can take Quercetin. I started to take it and have found that on the whole it makes a difference to how I feel. I read on Phoenix Rising that other people have taken it and some of them found it very helpful.

Mast Cell treatment seems to stem around blocking histamines 1 and 2 (h1 and h2) and stabilising the mast cells.

H1 can be blocked with an h1 receptor antagonist such as an antihistamine
H2 can be blocked with an h2 receptor antagonist - http://en.wikipedia.org/wiki/H2_antagonist - a popular one being Ranitidine, which is normally used to treat excess stomach acid/heartburn.
Mast Cell Stabiliser - Cromolyn Sodium (but some people use Quercetin or another natural product instead)

Plus -> Slow-release Vitamin C (increased degradation of histamine; inhibition of mast cell degranulation; not more than 750 mg/day)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/table/T5/

Earning Money With ME/CFS and Other Diseases

The above has been a constant problem for me. Since I got sick as a young child, my whole working life has been blighted by M.E. and then additional diseases that decided to jump along for the ride. It's really difficult to earn money or dare I say, have a career, when you are so ill all the time. The problem I have found is that in the past, if I improved a bit, I felt under a lot of pressure to go into the workforce. It's almost as if people forgot what's actually wrong with me and viewed me in the same light as everyone else - so I was being expected to do what healthy people do, when I was not healthy at all.

What happened in the long run is that I then ended up adding another few diseases to my list - as if my body couldn't cope with the added pressure to manage getting up and out and working, so it just broke down a bit more. By the time I got to 2008/09 I was so ill that there seemed no hope of me ever working again. I think that one of my fears has always been, since then, that if I do go back to work, am I going to end up back at that point (or worse) again and so reliant on others. Realistically, as my parents are getting older, they are less able to help me when I am in need of care and they also do not want to be put in that position by me... which I totally understand, but have a hard time processing mentally. It's not like I ever intended to put them in that position, but now I think there is a feeling that if I push myself too much, the result will be worsening of my symptoms/ability level and as I am already quite ill, any worse means I need a lot of care. So, by default, it seems as if I am making myself intentionally sicker by putting myself at risk through attempting to work.


The upshot of all these years of being working age, but struggling to find any way to work, has been that I have had a lot of time to think and try to come up with money making schemes. Most of the people I know who are chronically sick have a better chance of earning money if they are their own boss. It's not that it's easier - because in many worse it's actually harder as you don't get a guaranteed income each month and have to find clients/customers or whoever it is that will be generating your income; however, being able to work from home/bed, working somewhat at your own pace and not having to explain yourself all the time is very liberating. I know that in my case, because I live in a rural area, I have to battle with not just getting myself up/dressed/fed ready to go to work, but also get myself to work and that involves long commutes. I used to find that by the time I arrived at work, it was as if I had done a full day's work already. Long term this is unsustainable. With running your own business, there are many of the things that are involved with working in an office or whatever, but you as the sole trader are able to decide how to approach them and when to do them. You can choose whether or not to take on a job or sell an item to someone. If you are feeling your best at 5pm then you can work then instead of working at 10 am. For me, the ability to harness my best moments of the day would be really helpful as they are too erratic to be predictable and yet, if I do harness them when they come, I find I get a lot done (probably just as much as someone who sits in an office for hours each day).

After much thought about the above, I decided that I wanted to experiment with trying to make life work for me - as in, to be able to generate income despite being sick. I realised that I could do with more skills/honing the skills I do have so that I might be able to use them in self-employment and this is what I have been doing the past year or so: working towards setting up and opening 2 or 3 businesses. I am still working on it - as seems to be the case with these types of thing, it has taken me a lot longer than I thought it would... things get pushed back and when I have been too ill to do anything, I have just had to let it sit while I recover enough to have another stab at it. I am hoping that eventually by this time next year I might have 2 or 3 things going and might be in a better place financially than I am now.

Mast Cell Activation, Allergies and The Elimination Diet

About 2 weeks ago, I started doing some in-depth reading into Mast Cell Activation. It seems that MCA could be a component for some people in M.E. and other diseases. I am always looking for a new piece of hope or a new treatment to try, and if something (usually symptoms described) resonates with me enough, I usually end up doing a marathon of research (and try not to make myself worse by overstretching myself).

One presentation of MCA is in Mastocytosis. I found if I looked up information on mast cells, I kept coming up against this disease. The thing is, one can have MCA without having Mastocytosis - see: http://www.mastcellaware.com/about.html. Anyway, Phoenix Rising's forum has a lot of M.E. specific information and discussion about this... so if you want to know more, check it out on there.

What interested me highly is that, even with Mastocytosis, out of the list of symptoms here:

http://www.mastocytosis.ca/signs.htm

I have at least 42 out of the 58 - so I feel that is is possible there is a mast cell activation component to my illness. I am currently exploring treatment which involves: histamine 1 and 2 blockers, and mast cell stabilisers.

In addition, I seem to have increasing allergies/intolerances - reacting to things/food can be part of MCA. On a Mast Cell Disorder forum, the reactions people were describing were SO similar to how I react that I was really surprised. On that note, I have recently been getting sicker after eating, to the point where I stopped wanting to eat. Yes, Miss Foodie, actually preferred being hungry/starving than eating and suffering the poisoned after effects. It reached a point where I felt that I need to sort this out... imagine if a big component of me feeling ill is related to allergies!

I started on an elimination diet 3 days ago. You can read about it on my other blog: http://theonionfreekitchen.blogspot.co.uk/2013/09/an-update-elminitation-diet-and-more.html

I already am having no reactive episodes after eating this restrictive diet. It will be interesting to see what happens when I start the food challenges. I am a bit scared to be honest, as when I react, I react so badly, I literally feel like I am being poisoned and my body goes into a terrible state. I don't want to induce that, but at the same time, I need to know what to avoid.

As I was doing more allergy research I came across a lady named Joyce Weaver wrote a book called The Gourmet Rotation Diet for Allergy Sufferers - while talking about writing the book she said:

Writing this book was one of the hardest things I've ever done. I was a chronic fatigue sufferer and some days I could hardly get my head off the pillow. It felt like I had a permanent dose of flu. I got no help whatsoever from the NHS, but luckily I found a private allergy specialist.

Having discovered that I had multiple food and chemical allergies and received pioneering treatment, as well as radically changing my diet, I'm now much better, thank goodness. I wrote the book because I just wanted to help other people in similar situations to help themselves.

I almost feel like getting in touch with her to find out who this allergy specialist was/is. Anyway, I think I will get her book and see if it might help me. You can read the whole article here: http://www.freefromrecipesmatter.com/recipes/cookery_writers/articles/joyce-weaver-09-13.html

LDN increased to 4 mg

Looking towards the West Shore, Llandudno

When I finally got back from my travels - after my birthday trip on the boat, I went to see my college friend and her son - I did something that was probably not that wise. In my defence, I had been waiting for months for the right opportunity to do it: a time when my calendar was totally free. I upped my dose of LDN from 3.5 to 4mg. I am now only 0.5 mg away from the optimal low dose.

On the one hand I had assumed that nothing bad would happen as a result of this increase, and on the other hand I had left the free time to make sure if something did go wrong, I would be able to work through it. Of course, despite my optimism I did get a bad reaction. I think this was partially because I had also done so much in the latter half of August, and I was already suffering and trying to recover from that, so the increase just tipped the balance. I was really sick... It took me about 8 days to feel the side effects of the increase lessening. One has to really hold onto the thought that 'this is just temporary and will ease', because the feeling is so bad. I have been suffering really bad brainfog/cognitive impairment, and that doesn't seem to have lifted... blah. I am hoping over time it will improve again.

I have one more increase of LDN to do, and will probably do that in the second half of October. I will be staying on LDN indefinitely. I can't see myself willingly coming off it now, as that July 2 day accidental break was a total disaster.

Now I feel I have experiemented with and realised the value of LDN in my treatment plan, I am moving onto looking into Mast Cell Activation and trialling treatment. I will probably post about that separately next time I write on here.