cocobean: 2009

Saturday 19 December 2009

generic

Today, the new doctor gave me ritalin to try. Seaching google and the sleep forums on this medication, I found a few interesting links.

" I take about 50mg of Ritalin and also can't take anything else because I need something with a generic." one user posted.

I've not a clue of all this stuff. I'm still learning. But the ' something generic ' got me thinking. Call me dumb, call me blonde...I don't know what the difference is. So if I've studied it correctly, it's the cheaper version of the good stuff, that probably doesn't work as well as the patent version.

I was also googling xyrem and found this link.

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4114251.pdf

http://www.scottishmedicines.org.uk/smc/files/sodium_oxybate_Xyrem_(246-06).pdf

http://www.addforums.com/forums/showthread.php/showthread.php?t=18700

Monday 14 December 2009

14th December 2009

Woke up 7.30am.
Fried egg roll. Using organic extra virgin olive oil.

9.30am tired. I've had my usual x2 200mg provigil. No supplements yet.
Just away to take them now.

I hate taking them. There's a lot. It's a full time job in itself, just keeping on top of this sleep disorder.

Doctors, hospital

Bloody hell. Changed doctors. Seen two.
Both, wouldn't discuss anything of the sort until my medical files arrived.

I sent the hospital a letter along with symptoms current and a tongue lashing for the serious lack of communication between them and the doctors.

June 2008, had my overnight study. At this time, I was already on x2 200mg of provigil from the neurologist/doctor. Hospital sent a letter to the doctor after my overnight sleep study, recommending I take x1 200mh provigil.

December 08/ Jan 09, disputed current x3 200 mg provigil was working. Doctor re-wrote to the hospital recommending giving me x2 200mg provigil.

So, I wrote to them myself. Stating their lack of communication.
The only thing is, because the pharmacist gave me a lecture stating provigil was not
licensed for more the 400mg, asking how long I had been given 600mg a day. I was dubious to state this is my letter to the hospital.

First of all, I didnt want to put my doctors back up. Secondly, it would be hearsay.
Although he was giving me x3 a day 200mg. The prescription stated two.
I certainly was NOT having some pencil pushing pr*i*c*k telling me I was lying, insinuating I had some sort of need for it.

That's the thing. I DO have a need. To be awake! Provigil gives me some wake time.
The brain is willing, but the body is not able. Previously sleeping 18 hours a day. With provigil, i'm sleeping between 10-14 hours a day. Pending previous night's activities.

Still fearful

With the excitement of getting the infrared sauna, and probably the belief that I will be all better soon, I pushed myself to hard, to fast, to soon.

I'm glad i've kept notes of what I was doing, and taking. I certainly need to refer back to it, as i'm hermitted again in the house, half zombified.

Now, from my recollections. I'm sure, I cut down on some of the pills/supplements I was taking. Good bacteria ( £10 for 40 tablets ), and the parasite cleanse tablet
( forgetful, and probably don't like to admit to myself that there maybe parasites lurking ). But, that's not going to help me get awake, so, am going back to taking them.

Saturday 31 October 2009

21st October

21st October
Last night, heartburn and sore stomach, went in a salt water bath, 10pm
I think I was sleeping my 11.30pm, after sitting up a few times to heave up, what felt Freddie Krugger dragging a knife up the insides of my body.
Awake 7.30am.
Today. An organic pear. D-Ribose finally arrived.
X1 scoop of that mixed in with a half mineral water, half real fruit smoothie, most fruits organic with the exception of the tinned pineapples, and the Marks and Spencer’s Raspberries.
X2 provigil
X1 pregnancy multi vitamin
X1 prebotic
X2 fish oils
X1 magnesium
X1 p cleanse
X1 b12
Got the Post Office to go to, and going to try a wee sesh at the gym. When I was out, made an appointment to see the new doctor, got one for my daughter, got the info for the stopping smoking clinic to!
STOOLS NORMAL AGAIN TODAY!
1.45 pm til
2.30pm lay down in bed, snoozed 30 minutes
An hour on laptop searching more ‘ get better ‘ info
Made our tea, 5pm left for Falkirk, then to East Kilbride ti pick up the infrared sauna I won on eBay.
What a bargain!!! Brand new in the box. 3 seater, with cd player, radio, lights and 6 heaters.
Home 10pm, build by 11pm.
20 minutes on a low heat until I affirm safe heats.
( tea I made cheesy pasta, as was in a hurry to get away for sauna. With chips, with skin on, and baked beans ) Later I had a few chips with sweet and sour chicken from the Chinese. Stomach is ok. Few burps, but nothing painful and no heartburn

Bloody hell, I’ve achieved a lot in one day. Previously, I couldn’t.
Christ sake, it’s took me 6 months, just to change my doctors! It was easier to face the concept of driving to the old doctors to pick up a repeat prescription, than to face the emotions and energy of changing doctors, filling our forms, mingling in public ( looking like a dead women walking )
But as I feel better, I feel easier at facing tasks as such

20th October

I’m 35 yrs !!! On my next birthday. L , It’s not the age that bothers me!….where the bloody hell has my life went. Freaking sleep. The last birthday I recall was my 30th and 32nd.
My heaving, moaning, and doubled up in pain, is very little and here’s hoping my stomach is on the way to recovery. I’ve had very little need for the omeprazole or nuxium, or tramadole for stomach ache
20th October
Fell asleep last night at around 11.30pm. I’ve got so set in ways of being up late with a sore stomach, I’m finding it hard to adjust. I’m concerned that if I go to bed at 9.30pm/10pm, I will wake up at 6am, or even earlier.
Woke up threw the night dreaming, was half awake and remember recalling a dream. Mumbled and went back to sleep
Up 7.10am, breakfast, multigrain bread x2, one with expensive jam on and the other with manuku honey 10+. Update a website, whilst watching telly, had the same again for lunch.
I know I shouldn’t have to much bread, but it’s much easier than standing peeling fruits and cooking.
With it, both times, I had cooled down boiled mineral water, with lemon juice and teaspoon manuku honey
1.30pm.
Q10 x3
Pregnant vitamins ( asda ) x1
B12 x1
Vit D x 1
L-Carnitine x 1
Omega 3 x 2
X1 prebitic
2.30pm stomach sore, and got heartburn!!!!!
9.15pm and my old familiar sounds are back. Burning , sore stomach. FUCK ! Healthiest bread on the shelf and most expensive. I thought it would be gentler for digestion, spreading the manuku on. Will have to melt it in tea from now on

Vitamin hunting

19th October

19th October
In bed last night 11pm, bit sore belly, sleeping approx 12.30am.
Woke 7.10 am. X2 provigil. Tired by 10am.
Breakfast fruit smoothie with org pears, org kiwi, tin pineapple, Marks’s Satsuma’s
With 2 table spoons of tescos milk shake ( various vitamins in it )
A tablespoon of manuku honey 10+, lemon juice, mineral water, scoop whey protein, and green tea
Whizzed together, drank first half for breakfast, second half, 11am.
1.10pm Chicken wrap. Mark’s N Spencers prepacked chicken wholemeal wrap, lettuce, spring onions, pineapple slice
Gluten free mayo, org pepper, garlic salt, splash of fruity sauce, salad cream, extra virgin olive oil, sprinkle of fennel seeds with sea salt.
Ready to pass out at 1.30pm

Supplements took today at approx 11.30am
X2 omega
X1 B12
X1 L-carnitine
X1 magnesium
X3 Vit D3
X1 Vit C
Supplements at 5.30 pm
X 2 Q 10
X2 Vit c + zinc
X half L-carnitine
X1 prebitoic
X1 bowel cleanse

16th October

There's wasn't much noted on this day and I can't remember why.

16th October
x2 provigil. Got prebotic x 2 and stomach was a bit better, even ate mintrels, revels late last night without a sore stomach
Scrambled egg roll,….woke up 1am…..sleepy….1pm….going for a sleep at 2pm

15th October

15th October
Had a rough two/three nights. After eating potatoes! Baked potato last night, night before, organic chicken bread, org carrots, tinned peas, mashed potatoes.
So, gonna have to try a gluten diet. Mind you, I did have soft cheese with chives mixed through the mash, so could be dairy ?
Trials and errors for diet begins.
X2 provigil. Up 7am. Slept noon til 1pm. Nipped to Marks and Spencer’s for tea tonight, at 2.30pm. Had x1 provigil and x4 proplus to try and give me a bit of energy to get to shops. Home 3.20pm and ready to sleep again.
Today. Fresh fruit drink for brekkie. Organic apples, org kiwi, tinned Satsuma’s, tinned pineapples.
Had nurse today the kids and I. Have to see the nurse to check we're not diabetic and blood pressure before they will register you within the surgery ? ssshhheesssh, and had no energy to prep anything when I got home, and was feeling bad so had Doritos and a galaxy. Burping bad, and heartburn sore. Catch 22, can't fatham energy to make good food, so I eat more bad stuff. I need to stop cherry picking.
Supplements today = prebio 7, x 1 morning, 1 afternoon
B12 x1
Q10 x2
D3 x2

13th October

13th October 2009
Back on supplements now. Hasn’t been consistent. I could barely remember to brush my teeth at one point.
So, here’s today’s take. I haven’t felt good enough to keep a diary for the last 10/14 days ( can’t remember when I started taking the supplements ) some tablets I break in half, due to my whole body burning red, like I had been burnt and a high temp.!!! The mixture of all the tablets….I would have over dosed on Vitamin A and others, with high content.

13th October, woke up at 11am. Organic milk with Kellogg’s rice krispies. Supplements 12pm as follows
Vitamin C and zinc combined - three tablets
Vitamin C = 100.0 mg
Zinc = 15.0 mg
………….
Vitamin B12 = 1000 ug one tablet
Vitamin D3 = 10ug two tablets
Q10 = 30mg x2 tablets
Vit B complex - B1 7mg, B2 14mg, Niacin 4.5mg, B12 25ug, Protease 10mg. X2 tablets
Magnesium ( oxide ) = 250mg x1
Vitamin C slow release - 500mg x1
P-cleanse x1
ABC Plus multivitamins and mutli minerals . ( add content of this later )
* Binned B3 . Was burning up red badly, and realised B3 is Niacin as described in multi vitamins

8th of October

Diary
8th October - slept 3.15 til 5.30 pm. Tired and bed at 9.30pm. ( took cupcake* to college, went to bookers, charity shops, home lunch, sleep )
9th October - 10.30pm - done nothing today, tired, sore, and slept at 13.10pm til 14.20pm
Eating extra virgin oil, almost all organic, healthy eating
Eat rice, oat, popcorn as apposed to chocolate crisps
Having sea salt hot water baths
Eliminated cleaning products - only washing up liquid, shampoo left

*coco - partner
cupcake - oldest daughter
fudge cake - youngest daughter

Sunday 11 October 2009

Saturday 10 October 2009

Liver, Stools

Whilst in Spain I noticed my stools were better! I thought it was the sun. But remember drinking in Spain. So tried a few drinks and my stools were normal.

I think between the health benefits of the sun and the alcohol , it's kicked my liver into doing it job. ? Who knows.

I believe parasites are lurking within. I've read this many times on my research to finding resolution. Helicobacter Pylori is definate and re-curring. I recall the doctor saying my liver was slightly swollen. Sounding like a true blonde, I replied, but I don;'t drink alcohol. Doh. And there I went, researching into swollen liver.

I'm now drinking lemon juice and eating more apples and pears. And have some gut tablet things that has woodroot, blackwalnut, cloves and other stuff combined. I just need to remember to take the damn stuff !

http://www.drmyhill.co.uk/article.cfm?id=441

http://www.drmyhill.co.uk/article.cfm?id=269

Hermit

I thought I was on the mend. Had a nice few hours out window shopping the other day, and have been sore ever since. I'm desperate just to live! Sort out my bomb site house, and see a bit of historical sites in Edinburgh. I'm so sick of being a prisoner in my own home.

I'm eating well, majority organic. Taking my supplement. Although I don't have all of them. I'm aiming to get dressed and ready to go out tomorrow to buy them, on route to a Spa farm place that sells infrared saunas.

I'm hoping to rent out my house and this will enable me to clear the credit card bills that keep mounting with the financial pressure of spending on solutions to get some resolve.

There's a sauna on ebay. I'm hoping I get that for a good price, and won't get carried away with bidding. It's pick up only and a 800 round mile trip to pick the damn thing up.

Friday 9 October 2009

I'm awake

I have disputed the effects on my 6 weekly B12 injection with the nurse for long enough. Finally got them to agree to retest my levels.

She stated I had to withdraw taking my supplements ( I could be poisioning myself, she said )

This has had a terrible effect. to the point, for long enough, I could barely get out of bed. I was lucky to maybe have 3 days a week , with ' spoons ' to use. Even at that, it was for food shopping, paying the bills etc, I used my available spoons for.

I've had my results back from Dr.Myhill, and i'm kinda starting with her reccomendations.

Kinda you say >? Well, with all my spoons depleted, concentrating on reading long enough to understand the reply, is just about all the energy I can use. But I get the jist of it! Q-10, B12, multi vits, Vit D3, folic acid, Vit c, Zinc etc etc

My vitamin stock isn't up to the full list, but over the last few days, i've been taking the above.
I've been out window shopping for the first time in months! Bought a few books at the charity shop. The atkins diet. High protein. A protein diet I use was what I was on many moons ago, and was awake!

So, I've just had x4 free range eggs, x4 organic cherry tomoatos, org spring onions, sea salt+fennels seed. Mixed together into an omlete.

I'm removing dairy from my diet, and breads and i'm off to try home made sorbet.
Irecall having a small bread roll with my veg soup yesterday, and there it began, burping and farting! Sheeesh. No more bread! This will be hard. How am I going to manange with my pizza treat at the weekend. French toast.

Using fruit juice to replace milk on cereal. Gluten free corn flakes. They're passable and getting use to them.

Tuesday 6 October 2009

result 4

result 3

result 2

result 1

Daily diary is not happening

Who am I trying to kid! There's no way I can fathom enough energy to keep a diary of my hopefully, fingers crossed, recovery and maintainance of this disorder!

So much to do and where to start ? Diet, supplements, pacing. Did get myself a blood test to measure levels of this and that by Dr Sarah Myhill. The results back up what i've suffered and been complaining about for 20 odd years!!! The doctors either don't care. Have a financial interest on keeping you on prescribed medication, concerned about lawsuits ( and so they should be ! ) Their incompetence is ridiculous.

Oh you have post natal depression. Then just plain depression. Tested for under - active thyroid, over active thyroid. Diabetes. Eventually at the aged of 30yrs. One doctor tested for B12 levels. Ultra low they were, at 122 ! Normal levels being between 500-700. Low if they were at 400.

Re-curring h pylori, I investigated. Stopping smoking will help prevent it coming back, due to a lack of blood flow in that area, due to smoking. I asked the doctor to assist me with stopping smoking.
He response!!! ' You're not ready to stop smoking just yet'

Bloody hell, even the nurse at the stop smoking meeting, freaked.

I comprehend, it would be silly to stop cold turkey, seeing as my whole central nervous system is fucked!, but hey ho, I'd like to give it a go. I believe if I rid of the stomach issues, I can manage my disorder a hell of a lot easier.

So, do I try gluten free, diary free diet. 'No', the doctor said, 'it's not that'.
' Ok, what can I do to help get myself better ' I replied in dismay.
'There's nothing you can do, you're on these tablets for life'

Another time I went to see him. After realising the reason I was always looking so good and well, was because my appointments to see him and get my provigil always coincided with an appointment briefly after seeing the nurse for my B12 injection! I always felt a bit better for 7-10 days after getting that jag.

So, I made sure my next appointment was not after so. I went in, looking like death, pleading with him. To be told, ' You have to work with me, I can't help you if you don't work with me '

What the hell!!! I suggest I want to try changing my diet, stop smoking, healthy life style and all I get. Told to eat lots of veg, and no it didn't matter if it was organic.That's all I've been doing all my life. working on trials and errors to rid myself of this horrible disability.

So there it began. Jan 09, I started keeping sleep diary's, food diary's, continued using every waking moment to investigate how to better myself, myself! That's when I came across Dr. Sarah Myhill's website.

Friday 2 October 2009

02/10/2009

8.10am woke up, had a B12 vit.

8.40am small portion of Kellogs rice krispies with lactose free milk and a small sprinkle of brown organic sugar.

9.30 am x2 slice of french toast. Used free range eggs. No healthy bread in the house and yes, dare I say it, used the white stuff.

10.15 am had a hot salt water with magnesium in it.
Bloody hell ! my whole body is red, I could hear my heart pounding fast in the bath when I lay my head back in the water. It was strange but good I think. Could see the blue veins easily. Good to see colour in the lower half of my pale white body. I could feel the pulse beating in my knees, legs and bum cheeks.

So I'm semi awake. What do I do ? I'm anxious about starting housework or anything of the sort, incase it sends me back into a zombiefied state. So here I am on the computer, surfing a bit and updating this.

Almost 1pm. Going to eat.
Oh, I recall a big burp after the bath. Must be the white bread!

CFS test results back 02/10/2009

I have Sarah Myhill's test results back. Yesterday I tried to implement the diet reccomended.

8.30am x 2 200mg provigil
8.50am Kiwi
9.10am Kiwi
In between eating the two kiwi's. Boiled eggs, prepared extra virgin olive oil, lemon juice, ginger root and mixed herbs dressing.

10am, egg salad breakfast. It was all I could hustle together from the fridge and cupboards.

I'm dreading starting this regime. But I will keep at it, and keep these notes for submitting a diary for future reference.

The phone went at 11am, and I was busy from there. Dealing with trying to rent out my house. The council, emailing.

Head was sore by 2pm. Switched off the laptop, phone, had a kids portion of tesco microwave macaroni. I know I shouldn't have, but two hours of faffing about making breakfast, I couldn't contemplate making lunch. Had half a banana and some pistachios as well, with cranberry juice.

Had a snoze at 5.40pm until 6.20pm.
6.50pm bath and dressed, rushed to Argos.
7.45pm purchased an electrical blanket
11pm magnesium, vit C and zinc. Blanket on off to sleep.

8.10am woke.

Links to various articles

Various articles i've searched for and read at almost each waking moment I've had spare, in a desperate bid to solve my disabled body.

http://www.ei-resource.org/illness-information/environmental-illnesses/chronic-fatigue-syndrome-cfs-myalgic-encephalopathy-me/

http://www.health.com/health/condition-section/0,,20187915,00.html

http://www.pubmedcentral.nih.gov/tocrender.fcgi?journal=369&action=archive

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Craig%20Robinson%20Paper%20-%20Biolab%20ATP%20CFS%20function%20Study.pdf

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=14757

http://www.afme.org.uk/res/img/resources/IA%2038%20antibiotics.pdf

http://209.85.229.132/search?q=cache:mZs9VvanKpEJ:www.shropshiremegroup.uwclub.net/statement.doc+dr+myhill+recommends&cd=10&hl=en&ct=clnk&gl=uk

http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=3381&postdays=0&postorder=asc&start=0&sid=7a593eb24159bfad54c5cc283679b26e

http://www.drmyhill.co.uk/article.cfm?id=264

http://cfspatientadvocate.blogspot.com/.

http://www.afme.org.uk/res/img/resources/IA%2052%20MCS%20and%20ME.pdf.

Saturday 13 June 2009

Clinical

http://www.clineu-journal.com/home

Exercise

Me personally, have found 10/20 mins aerobic treadmill and rowing machine followed by a stretch, then weight training, a warm down then an intense swim works for me, or cross trainer/cardio
Keeping it consistant with healthy eating and sleep hygiene.

Very difficult though!

http://www.pponline.co.uk/forum/talk-performance/post-exercise-malaise-chronic-fatigue-syndrome

Melatonin

http://www.frimleypark.nhs.uk/gps/sharedcare/Melatonin.

http://en.wikipedia.org/wiki/Melatonin

http://www.frimleypark.nhs.uk/gps/sharedcare/Melatonin.

http://clinicalevidence.bmj.com/ceweb/conditions/sld/2303/2303_I1.jsp

http://www.crd.york.ac.uk/CRDWeb/ShowRecord.asp?ID=12005008266

http://www.ahrq.gov/clinic/epcsums/melatsum.htm

Strenght training vs Cardio

I find a

http://www.brianmac.co.uk/articles/scni47a6.htm

http://www.myfooddiary.com/resources/ask_the_expert/aerobic_vs_anaerobic.asp

http://www.arthritistoday.org/nutrition-and-weight-loss/weight-loss/weight-loss-guide/exercise-weight-loss.php

http://www.bodysculptfitness.co.uk/Articles/superchargeyourmetabolism.html

http://chronicfatigue.about.com/od/fmsglossary/g/cortisol.htm

http://chronicfatigue.about.com/od/whatischronicfatigue/u/ChronicFatigueSyndrome.htm

http://www.brianmac.co.uk/enduranc.htm.
http://www.health-spy.com/acidosis.html.

Articles

I'm always researching and saving information regarding the sleep issues I have. So I thought, what would be a better way to access them all at once. Hence my blog.

I first read about this hormone in the book ' Why Mars and Venus Collide' and it always pops up on searches for solutions to aid my sleep disorder.

http://en.wikipedia.org/wiki/Orexin