Saturday 29 December 2012

2mg

Last night I upped my dose to 2mg. I was previously at 1.5mg. I did struggle to get to sleep, but once asleep, I slept for 8 hours and also dreamt.

I am very tired today. I feel as if I could sleep for a few days. I do find I need to allow for this with dosage increases, and I still get bouts of the headache/nausea combo. I wonder if the headache/nausea is some form of detox reaction, as it seems similar to reactions I have had when juice fasting.

I have been doing a lot more and I continue to make improvements on LDN. I am still hoping that I will continue to progress over the next few months. I am optimistic, as so far this drug has given me the best quality of life in years for the least effort. Prior to this I had improvement last summer on the modified Hippocrates Diet, with 1 tbsp of E3live per day. This 'clean' eating and flooding my body with nutrients did have a noticeable impact, but it is hard to sustain. You have to grow salad and wheatgrass, and sprouts. Then juice to make green juice and wheatgrass juice. It's more achievable for me in the summer.

Tuesday 25 December 2012

3 weeks

I have reached the 3 week mark of taking Antaxone, which is a Spanish branded liquid version of Naltrexone. Yay! I am still at 1.5mg. I am happy with this, but I plan to increase either on Friday night or on Saturday night - I have to wait until then in case I get side effects, as before then I have things to do.

At 1.5mg, I am holding up well. The most notable benefits:

Increased stamina
Decreased pain (I still have pain, but it is less intense)
Some nights of better sleep (I would love this to become every night)
Periods of less brain-fog (e.g. some days my word recall is better than usual, and other days it is poor)
Mind/brain feels generally sharper
Mentally - a feeling of wellness, desire, optimism

I did have a bad day on 24th December, as I awoke with a migraine and nausea, but overall I am doing a lot better.

So far I am really impressed with LDN. Low Dose Naltrexone seems to be doing something MAJOR to me, and as someone who doctors have given up on and who has been so debilitated for so long, this is life changing.

Thursday 20 December 2012

Officially.... TIRED

Urgh!

I am so TIRED. I have been so tired that my eyelids are actually drooping and closing of their own accord.

I believe that perhaps a little natural drowsiness from my body's response to the LDN is being compounded by the sleep issues. Last night I was unable to get to sleep until maybe 2.30-3.00 a.m. and I awoke at 7 to take Nature-Throid, then went back to sleep and was awoken properly at 9.10 a.m.

The night before was DELICIOUS... because I slept so well for a nice 6 hour chunk. I really hope that with time I will be getting more chunky sleep nights and less insomnia/fitful ones.

In good news, I still feel way better in the mental health area...

I feel LESS ANXIOUS! Yay! This is pretty amazing, as since AI thyroid issues, I have really struggled with bouts of anxiety that seem to be linked to some kind of cortisol/adrenaline misfiring. I also still feel less apathetic and yesterday/today I actually experienced:

JOY and OPTIMISM...

I was reading the Quarter Life Crisis forum yesterday, and instead of it triggering me, I felt quite calm. I felt there was some hope for me and my life.

Wednesday 19 December 2012

1.5mg

I upped my dose to 1.5mg of LDN on Saturday night and braced myself. It was fine... I didn't get any nausea or headache reaction, which highly amazed me given my reaction to lower doses. Of course I was very pleased.

I do seem to have picked up a stomach bug, which has given me a headache and nausea yesterday and nausea today. Other members of my family have it too.

My sleep is still erratic; it follows a pattern of something like 2 nights poor sleep and 1 night of better sleep. On the night with better sleep, I seem to get something like 6 hours of straight sleep. This is still not a lot, but it is far better than never getting a chunk of sleep.

One thing I have noticed is that I am very tired. I feel very sleepy! In the morning, I am able to get up - even a bit earlier than pre-LDN - but after breakfast I feel very sleepy. I also feel like that late afternoon and in the evening. It reminds me a little of how I felt when I was on Tegretol, but without the intense brain fog. My mind feels slow, yet clear and I just want to close my eyes and nap. I don't actually totally mind this if I can rest, but it it is inconvenient and annoying when I have to do things!

Sunday 16 December 2012

Improvements!


Good news...

I managed to go from Thursday to Saturday inclusive without a headache or a bout of nausea. Even better, I felt improvements on both Friday and Saturday. It is SO hard to quantify, but the two things that leapt out at me were:


  • Apathy receeding
  • Brain-fog clearing


Those of you with autoimmune thyroid disease will know that the hypothyroid element - Hashimoto's disease - can give you a sense of apathy like no other ever experienced before. I honestly have never been an apathetic person, even when I felt at my lowest over the years with M.E., I still had a lust for life and a sense of desire. Autoimmune thyroid disease took all that away and not in a depressive sense, as I often was not depressed at all, but I just felt totally apathetic... exhausted without a sense of care or desire. When you know this is NOT your 'self', it is very upsetting to feel that way. I have always been a happy go lucky type of person who would talk to anyone, help anyone and try things with a sense of adventure, but over the years of chronic health problems, this has gradually been eroded. When my thyroid nosedived, it was like a final nail in the coffin.

Since taking LDN, my sense of desire has started to awaken. I can feel myself having a tiny glimmer of hope. A tiny sense that maybe this is not as good as it gets, and maybe there is a chance I can do something with my life that is more than what I currently do. The feeling is not massive, but it's there and it seems strong enough that even when I am crashing or experiencing side effects, it's not overruled by the awfulness I am subjected to.

As for the brain fog - another bane of my life. I have lived with this for over 20 years, and battled against it to get my education and to have meaningful relationships with people. I could definitely do without it. I am aware of a new sense of clarity. I am not saying I will be cracking out the algebra tomorrow, but I noticed in my class on Wednesday that for the time of day, I felt far more alert than normal and I had not even had a coffee. I just felt that things in my brain - yes very technical description. - were connecting better than before. So I was not observing everyone else as if from behind a misty pane of glass with ear muffs on.

Energy-wise, I have more energy. However, the energy comes with a warning... While I might have the spark of energy to do something, it does not necessarily mean I should or that I have enough to finish whatever it is I chose to do without depleting myself/crashing. In short, feeling I have the energy is quite different to actually having the energy and not paying for it later with a PEM (post exertional malaise). So what has happened is that I have done the typical thing of:

Oh I feel a bit better... Let's rush out and do x, y, z that needs doing...
Wham, bam, thank you ma'am... CRASH.

I feel as if I have been doing - active/crash, or active/active/crash. Obviously, this has to stop. I need to go back to M.E. 101 and start pacing. So what if I feel a bit better? I should really do what I would normally do without making myself worse - my baseline - and then use the extra energy time to force myself to rest and potentially heal. I am going to practice that this week. I am in bed as I type this and going to lie down now.

Thursday 13 December 2012

50/50

Yesterday was a 50/50 kind of day...

50% good and 50% bad.

I am still suffering from very disturbed sleep. I randomly get to sleep - there is no regular time, and then I wake up, sleep, wake up, sleep, wake up...

Yesterday I had to wake up early and get myself out of the house, as this academic year I had challenged myself to attend a class. I thought: at least one class out of the house, activating the brain and meeting people; attending a class will do me good. It's been tough, and I do think has impacted me - set me back ability wise, but having had these health problems for most of my life, I sometimes feel that I just have to 'do' something, even if it comes at more than just a financial cost to myself.

The good - hopefully LDN related - news is that I felt cognitively more functional. I felt a lot more alert than normal. I felt slightly more energetic especially considering that I had had poor sleep.

In my typical hopeful fashion, I started to think I had turned some corner after my dose increased. Yet, by 2pm, I was LDN sick again -  with a bad, bad headache and terrible nausea. It was so bad, I could not do a thing and had to spend all afternoon and evening in bed. I also developed a runny nose. Feeling so unwell and so incapable, I just went back to feeling desperate and miserable.

So last night, I decided to take a 'drowsy' allergy pill. Usually that would make me have a fairly good night of sleep, once I actually fell asleep. Not last night, which was another night of disturbed sleep. Somehow LDN overrode the tablet!

Today I woke up feeling not too bad - quite exhausted, but not crazily fatigued to the point of bed or chair bound. I decided that if today is headache and nausea free, I will be very happy. To have a good day without those side effects would keep my spirits up! I managed to go for a walk... And although that did make me feel unwell in retrospect, the fact I even managed to do it in such cold weather, was a miracle really. I keep on hoping.








Tuesday 11 December 2012

1 week in - humps and bumps along the road.

Today is day 7 of taking LDN and day 6 of feeling the effects - as I take it at night, you are always a day behind feeling the effects.

Yesterday was great. I had a good night of sleep. I felt so much better than Sunday, which was not particularly hard as it was awful. I had more energy, more stamina and felt brighter. I went out, had lunch and did some grocery shopping. When I did crash, and yes I did, it was very sudden and I realised it probably had more to do with dehydration than anything. I drank a bottle of spring water with lemon and lime juice in it (as this was the healthiest thing the store was selling at the kiosk on the way out) downed it and felt better quite quickly. In the evening I felt very tired, but nothing beyond what I would normally feel. I thought I had passed the hump... and was pleased it had only been a day.

Last night was not so good. It took me ages to get to sleep, and when I did, it was fitful and not restful. I had dreams, but they were all stressful and horrid. I awoke with what I am terming the LDN headache, which is the mild/threatening kind and enough pain to be annoying. Previously this had disappeared by say 11 or even 10.30 a.m.; however, today it has remained. I feel wiped out. Accompanying the headache is nausea, deep down nausea and I have started to lose my appetite. I have accomplished nothing today, beyond sitting in a chair by the fire with my dog on my lap. I had plans, but they have been abandoned. I hope I feel better tomorrow, as I have a class first thing for 2 hours. I cling to the memory of yesterday.

Sunday 9 December 2012

LDN ~ Low Dose Naltrexone

I decided to try taking Low Dose Naltrexone in the hope it might help me.

A little background - I have been chronically sick since 1991. I suffer from mixture of problems, but the main ones I am hoping might be helped by LDN are autoimmune thyroid disease and M.E. (CFIDS).

LDN is typically taken at night. I take mine between 10.30-11 p.m. I started with 0.75 mg and am now taking 1 mg. It seems as if when I take a new dose - i.e. initial dose and this increase to 1 mg - I end up having a day of intense exhaustion. To the point where, with this increase to 1 mg, I have spent the day bedbound feeling very unwell.

Despite knowing that LDN can promote initial herx reactions, I never expected to become completely and utterly incapacitated by it. I thought herx might mean headaches and nausea or something along those lines. This total crash is horrible, as on a normal, good day I usually get up for a bit and get something done, and spend then rest of the time up (as in dressed and downstairs), but either seated or lying down.

Obvious reactions -

The obvious reactions I had with my initial dosing were:

Night sweats
Mucus shifting
Feeling bouts of extremely hot or flushed (despite it being actually very cold)
Headache the first night

Goods signs:

Couple of nights with deeper sleep and only waking up once!
Managed to do more for 2 days

Bad signs:

Extreme exhaustion
Fitful sleep
Lead weight feeling

So, I am hoping that once my body acclimatises to this 1 mg, I can have some more of those 'doing more' days. If I can get to next Saturday having recovered from this feeling and be back to my normal with some additional energy, I will be VERY pleased!

Back to lying down for me now...