Archive for the 'Treatments' Category

Alternative Low Dose Anti-Depressants to Amitriptyline

138/365 amitriptyline 30mg

I currently take low dose of Amitriptyline (30mg) for pain and migraine relief.  I’ve been looking at alternative low dose anti-depressants for use in ME/CFS to help with pain and if possible aid sleep also.

I apologise for lack of links to evidence for my findings. I compiled this document for personal use as I researched but it struck me it may be useful for other people, particulalry with ME/CFS, to see the list too. Where I found a tricyclic was not sedating or had a bad reputation heart wise I didn’t research it any further.

If I were to switch tricyclic I’d like to try Doxepin or Trimipramine. Doxepin is supposed to be effective for IBS. eczema, chronic pain and to aid sleep – all useful for me. Trimipramine is good for chronic pain and very effective at sedating without disrupting REM sleep.

Amitriptyline works well for me but I do have a fast heart rate. My GP does not think this is due to the amitriptyline as it’s such a low dose but I’ve heard from other ME/CFS people that even a 10mg dose can effect heart rate.

TRICYCLICS

Tricyclics like amitriptyline are sedating and good for pain. But side effects can include heart problems, although many doctors say this is not so on low doses but some patients (particularly ME/CFS patients sensitive to medications) say it does.

Tricyclics can interact with morphine, tramadol and antibiotics.

Amitriptyline is cheap and very commonly prescribed. Alternative tricyclics include:

  • Doxepin (Sinequan, Aponal, Adapine, Deptran, Sinquan)  Sedating so useful as an aid to sleep. Can be useful for IBS (lessen gut activity and secretions). Used for insomnia as Silenor. Good for chronic pain & tension headaches. Used for eczema. Helps with itching.  Used in fibromyalgia. The typical dose is 10-50mg daily.
  • Trimipramine (Surmontil, Rhotrimine, Stangyl) is the most sedating tricyclic. More effective sedation as aid for sleep than amitriptyline and it doesn’t suppress REM. Good for chronic pain. Typical dose is 5-75mg daily.
  • Duloxetine (Cymbalta, Ariclaim, Xeristar, Yentreve) sedating. Has been studied in use for ME/CFS and a study for FMS at 60mg study showed good results. Duloxetine is thought to enhance the nerve signals within the central nervous system that naturally inhibit pain (in diabetes feet, leg and hand pain). Might cause high blood pressure and OI problems. Can cause sexual dysfunction which can persist after treatment has stopped for months or years. 
  • Trazodone (Desyrel, Molipaxin, Trittico, Thombran, and Trialodine) (SARI) Is sedating so good to aid sleep. Typcially has less side effects than other tricyclics. Effective for sleep but less effective for pain. Sometimes taken in conjuction with sedating tricyclic like Nortriptyline.
  • Dothiepin (previously known as Prothiaden, Dosulepin) Sedating so could aid sleep but danger of long term toxicity to the heart
  • Imipramine (Sormontil, Antideprin, Deprimin, Deprinol, Depsonil, Dynaprin, Eupramin, Imipramil, Irmin, Janimine, Melipramin, Surplix, Tofranil) Is not sedating.
  • Nortriptyline (Pamelor, Allegron) Is not sedating but good for pain so can be effective combined with another sedating tricyclic.
  • Protriptyline (Vivactil) Is not sedating.
  • Clomipramine (Anafranil) Is not sedating. Can’t be combined with SSRI.
  • Despipramine (Norpramin, Pertofane) Not for patients with a family history of dysrhythmias.

New tricyclics which generally have less side effects but are more expensive:

  • Gamanil, Lomont (lofepramine) Is not sedating
  • Motipress (Nortriptyline + Phenothiazine)
  • Motival (nortriptyline + fluphenazine)
  • Triptafen (amitriptyline + phenothiazine)  Only tends to be prescribed short term.

SSRI’s

SSRI’s like Prozac are  not as effective for pain but do energise.  But this can be problematic with ME/CFS possibly due to abnormalities involving serotonin transmission. Dr Cheney urges against the use of SSRI’s and other stimulant medication as it effectively fries the brain and “taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders” . But another study showed SSRI’s are effective in improving numbers of natural killer cells.

Sertraline (Zoloft) in some studies show major improvement in ME/CFS. Prozac, Zoloft and Paxil (paroxetine) have been shown in controlled, blinded studies to improve autonomic function.

Prozac, Zoloft and Paxil are most likely to suppress libido.

OTHER LOW DOSE ANTIDEPRESSANTS

Venlafaxine affects serotonin and noradradrenaline levels. It activates energy levels but may interfere with deep sleep. May be effective in increasing pain levels. May possibly reverse immunological disturbances involving natural killer cell activity but other studies have shown it has little benefit for ME/CFS.

Wellbutrin increases dopamine. It can be taken alone or with another antidepressant.

MAOIs raises levels of noradrenaline, dopamine and serotonin but need major dietary restrictions that can otherwise produce a potentially fatal reaction.

USEFUL LINKS

Sleep in CFS – Dr David Bell

Using Antidepressants to Treat Chronic Fatigue Syndrome – Dr Charles Lapp

Treating CFS Sleep Dysfunction – Sue Jackson

Trazodone in Chronic Fatigue Syndrome (ME/CFS) Treatment

Doxepin helps itching, why;?

Amitrityline – Mingraines (useful info about side effects even at low doses)

Amitriptyline – Netdoctor

SSRI and Stimulants: Frying the Brain – compiled from notes between Carol Sieverling & Dr Cheney 2000

High Heart Rate (POTS)

55/365 heart rate monitor my normalThe idea of Pacing By Numbers is an interesting concept but a little controversial as some health professionals think it’s a bit obsessive. To those trying it they find it a way to quantify when and how much effort to use and it gives a clear signal when to stop.

Basically you wear one of those heart rate monitors used by people at the gym and try to keep your heart rate below your AT (anaerobic threshold) which is when you start to use energy you don’t have. For me using the calculation that’s 106.

Having bought my HR monitor I started to wear it to observe what my heart was doing when I was resting, sitting using the laptop, getting up to the loo, preparing lunch or a cup of tea, going up stairs and so on.  I discovered my average sitting around doing things like watching telly was between 97 on a good day and 108 on a bad day.  When I got up to do things, gentle things like make a cup of tea, it was up to 130-140. That’s higher than most people get when they work out. My maximum heart rate is supposed to be 160.

When I went on high doses of tramadol and high strength co-codamol it was even higher and at one point walking from the car up a few steps to my brother’s front door my heart rate hit 162 at which point I stopped looking at the monitor in an attempt to relax as much as possible!

Having done some research about POTS (Postural Orthostatic Tachycardia Syndrome) especially in M.E. I made an appointment to see my Lovely GP to discuss whether it could amitriptyline causing it or whether we might be looking at a POTS diagnosis.

I saw my Lovely GP today and she says it’s very very unlikely the highHR is due to amitriptyline as the dose is so small.

She hadn’t heard of POTS but I had printed 3 articles, a testing sheet (with CD copy) and a list of specialists for her. She was very interested to learn a little about POTS and keen to read up.

Happy World Heart Day!

By Robinn on Flickr

I’m going back on the 17th May at the end of her surgery to do proper POTS testing so we have lots of time.

She took my pulse sitting which I guessed right was 104 (she was impressed I could guess my heart rate but I didn’t tell her I’ve been wearing that heart monitor a lot!). Then I stood for like 30 seconds and she took it and it was 116. Not a POTS test but enough to both satisfy and equally fuel her interest. She said 97-104 as my average sitting rate isn’t totally surprising as I’m technically unfit from the sedentary ME thing but when I told her if I lie down and do deep relaxtion it doesn’t change she was a bit surprised and intrigued. I have an effective deep relaxation track which almost sends me to sleep and it lasts 30 minutes but even with that lying down my heart rate doesn’t seem to dip below the low 90’s.

I’m booked in for an ECG tomorrow morning with the practice sister to rule out heart problems.

My GP says since the NHS funding cuts and being in the new world the system is all very confusing again and it seems very difficult to do the “Book and Choose” of before where you could pick any specialist you wanted. So seeing an out of area specialist may now require an application for special funding or perhaps referral to local cardiologist then on to POTS specialist. Seeing as how most docs don’t know about POTS that seems like a long shot to me.

Atenelol

By deartistzwei on Flickr

But I did tell her that I have friends online with POTS who are being treated by their GP using beta-blockers (Propanolol being the one of choice for POTS and ME) so we could maybe do without a specilaist referral.

Am stupidly excited at the prospect of trying Propanolol as I think my high HR is responsible for a lot of my “stamina” issues – why I can only stand for a few minutes or walk very short distances. I’m excited about Propanolol because I know a lot of people in the ME/CFS pacing with HR monitor Facebook group have had good success with it but not with other beta blockers.

She does have a good article on POTS (from John Hopkins CFS clinic) which lists drug therapy options (including some notes from me! Like how stimulants are not advised by ME experts and the beta-blocker recommended isn’t tolerated well by ME people) so she can do her homework on other options she might think are more appropriate or not.

She was apologetic she couldn’t fit me in next week so I re-assured her my heart has been fast for a long time so it can wait a little longer. And I only have to wait 2 weeks anyway! Suits me well as I have the phsyio specialist next week with my back which is a 45 minutes assessment so that’s my big task for next week.

I’m relieved I don’t need to stop the amitripyline as it is very effective for pain control especially my chronic back pain and migraines.  I have a little seed of doubt as to whether it could be triggering POTS but it is a relatively small dose and as it’s effective if the POTS can be treated successfully then it’s not an issue anyway.

UPDATE 4th May 2011: Had my ECG today which was fun thanks to a lovely Sister even if my heart rate was a bit scarey! Hitting 129bpm just sitting down I think due to getting up early, washing, dressing and walking from the car to the consulting room. She tried to do it standing up but the signal kept cutting out so she took one sitting and one lying down. When I lay down it went from 129bpm to 108bpm but then climbed again. Not a good indication of POTS or not because I never got relaxed enough and was recovery from moving around. But definately showing my fast heart rate in action! I guess I’ll find out if there’s any underlying cause from the ECG when I see my doc again in 2 weeks.

Meanhwile I’ve been told by a ME friend that just a 10mg dose of amitriptyline was enough to take her resting heart rate from an average 70-80bpm pre-amitriptyline to 100bpm on the tablets.  So I think when I see the doc our first line of action should be to withdraw the amitriptyline to see what effect that has.  Unless she thinks we should treat it anyway as amitriptyline has been so effective for pain and migraines for me. Plus there are other tricyclics with less side effects I could try (which are more expensive) which is something else to throw into the mix. Doxepin and Trimipramine being my shortlisted favourites to try (in that order). Doxepin is good for migraines, chronic pain and IBS and eczema as a bonus and it’s more sedating so could help more with quality sleep.

I’ll have to see what the Lovely GP thinks!

Ha! I knew it. No miracles there.

I love this story in the Daily Mail by Esther Rantzen about her daughter’s ME because so often she’s been used in the media as proof positive that the Lightning Process cures ME and is somewhat of a miracle.  This story shows it’s simply not true.

Not only does Esther’s daughter admit that she was having to force herself through exhaustion to function after the Lightning Process and we’re told that it helped but it didn’t cure – but she’s now discovered she’s been an undiagnosed coeliac all this time.  A condition which certainly seems to account for some, if not all, of her ME symptoms. LP didn’t make her healthy again.

In the years since my recovery in 2006, I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it’.” Emily Rantzen – Daily Mail, 12 February 2012

Dragging yourself through life and faking it to you feel it doesn’t qualify as cure in my book yet LP have continued to herald this case over the years as proof that LP cures ME.

Emily had severe symptoms and it was carefully managed hospital treatment and pacing over many many years that got her to a point where she had improved enough to be able to walk.  Only at that point did she try LP and although it gave her an improvement she still had to pace carefully with relapse always a constant threat.  That doesn’t qualify as cure to me and it doesn’t qualify as anymore a successful treatment than using pacing perhaps with CBT which you can get for free.

“… she was imprisoned  –  bed-bound, lying in a darkened room, unable to read, write or even to speak.

At that point she went to hospital, where they pushed her by baby-steps, one word at a time, one more minute of light each day, until she progressed into a wheelchair, and then on to her feet…

And she continued to improve  –  slowly, year by year. But it was through management and willpower, not treatment and cure. As with many families battling an illness for which there is no known treatment, we were offered countless ‘miracle cures’….

Since neither she nor I are attracted by unproven complementary mumbo-jumbo, we politely refused. But when a friend and fellow ME sufferer told us about the positive results of the Lightning Process (a form of cognitive behavioural therapy or neuro-linguistic programming), Emily decided to try it.

It worked, for her, brilliantly. It showed her a way to combat the symptoms that were overwhelming her. So now, at last, she has the energy to catch up on the education she lost, and she is hugely enjoying studying for a degree in psychology. She still has to pace herself – tiredness is a constant background to her life, carrying with it the dread that if she exhausts herself, she might relapse again.” Esther Rantzen – Daily Mail, 12 February 2012

That coeliac disease has played a major part in her ill health and nobody had tested for  before is staggering.  But then we know we’re not routinely tested for such things either as ME sufferers.

It’s not clear yet whether coelic will prove to be the root cause of all Emily’s problems or a contributing factor.  For her sake I hope she finds it is the answer as she can get on with her life knowing her to manage her condition.

But it does raise questions about how many other people have underlying treatable conditions that are just not looked for or noticed.  And how many of those with their ME mis-diagnosis respond well to treatments, therapies and research trials therefore skewing results. I’m not going to get into that right now as I’m not wanting to start off on the “faith in my diagnosis” dialogue again.

What I really want to take from this article though is that LP can’t uphold Esther Rantzen’s daughter as cured by the process any longer.  I guess it won’t stop them from trying or from using it to show they can cure any condition now she has a different diagnosis.

For me after all those in your face articles saying this could cure people like me I’m so pleased to see proof that it didn’t in fact cure her either.  It helped, but it didn’t make her well.  And it didn’t take her from being bedridden to active – the NHS, many many years passing and her own determination did that.

 

Just in case you want to leave a comment saying LP or related therapies are wonderful please note I won’t be publishing such comments so don’t bother. I’m not interested in therapies that want me to risk what little function I have with no proven results and which pays no attention to the physical strains and risks their therapy exposes me to.  My blog, my decision.

Making My Own Tummy Remedy #2

I’ve been successful with making my own tummy remedy.

I’ve been using:

  • 1mg Sodium Bicarbonate
  • 0.8mg Potassium Bicarbonate
  • 0.5mg Citric Acid

I started with less citric acid (0.2mg) which was enough to help disolve the other ingredients with effervesence but left a lot to be desired in the taste department.  More citric acid makes it taste a lot better and sort of refreshing.

The tub of Sodium Bicarbonate I bought is packaged for medicinal use which is handy as the directions suggest (for adults and children over 12) “Take 1g to 5g in water every 4 to 6 hours (a level teaspoon holds about 5g)”

Of course this is not for those on a low sodium diet and it also has warnings for “heart, kidney or liver problems, are taking other medicines, or are pregnant. May cause abdominal cramps and flatulence“.

My homemade tummy remedy seems to be effective but I’m still not sure it’s as good as Resolve.  Which is odd because it’s the same but without the paracetamol.  Although it’s also missing 30mg of Ascorbic Acid Ph Eur, 153mg of Anhydrous Sodium Carbonate Ph Eur, plus colouring, saccharin, glucose and sucrose.

I’m pretty much persuaded to ditch Eno though for all but maybe travelling with as it’s basically Sodium Bicarbonate with some Citric Acid.  Plonking half a teaspoon of sodium bicarb in a glass of water is far cheaper than buying sachets.

I can remember laughing at an old movie where the guy is always asking for some bicarb for his stomach but it seems old wives tales are not always tales!

I have a 1ml measuring spoon in my drawer and confirm that is the same as 1mg of sodium bicarbonate.  Which is handy.

I’ll keep trying the home remedy as I think it’s pretty effective – but I will check out what those other missing active ingredients in Resolve do just in case.

LDN for ME/CFS

I take 2.6ml of LDN each night and 2.6ml each morning for ME/CFS.  It definately helps me.  It is not a miracle cure and I am not 100% but it does give me a significant improvement. This is a summary of the information I have about LDN so far.

I started LDN in December 2009 but it took a while to find the right dose.

My sleep is more sound and deep, my brain /cognitive function is better, my energy levels and stamina have improved slightly, my recovery from exertions is better.  When I overdo it I still get wiped but I don’t think it’s as bad as it would be without the LDN.

But some experts recommend that people with ME/CFS take it in the mornings as they have poor sleep already and LDN can disrupt sleep.  I tried taking it in the morning and it made me a spaced out and made my symptoms worse.  For me it helps me sleep, both getting off to sleep and with the quality of sleep I get.

I have tried higher doses but it has not agreed with me.  I started on 3ml which made me feel quite ill and brought a lot of symptoms back.

With LDN a higher dose doesn’t necessarily mean better results.

The guidance on starting LDN and adjusting the dosage I have had is:

The introductory dose is 1.5 mg of liquid LDN for the first 2 weeks of treatment, increasing by 0.5 mg every 2 weeks until the individual find the dose that suits them best.  If there is an increase in symptoms when taking a higher dose, it might indicate that this dose is too high.  Lower the dose, and improvements should become apparent. The maximum dose is 4.5 mg which most people find effective and stay on that daily for maintenance.

The 2.5ml dose has been optimum for me. If I try to go to 3ml I start to feel very nauseous after a few days. It’s a tiny increase in dose but doesn’t seem to agree with me – bringing back my ME symptoms.

Here’s how I got hold of LDN for ME/CFS:

My GP is supportive of my ME but her practice would not allow her to prescribe LDN for ME/CFS on the NHS due to ‘lack of evidence’.  There may never be a lot of evidence as it’s a cheap drug to make so big pharma companies aren’t too interested in funding trials.

Unfortunately unless you have a GP or a specialist who is willing to write a letter confirming your diagnosis and saying they are happy for you to try LDN the following method is not going to work for you.  There are other ways so see the links at the end for further info.

  1. I contacted www.e-med.co.uk to tell them I was interested in trying LDN for ME/CFS.
  2. They emailed me back to say they would need a letter from my regular treating physician (eg consultant or GP) confirming my diagnosis and stating that they are happy for me to try LDN. (I know this will be a sticking point for some people wishing to try LDN).
  3. I spoke to my Lovely GP on the phone who was happy to write a letter in which she gave my diagnosis as Chronic Fatigue Syndrome (CFS), said she was happy for me to try LDN, explained why she wasn’t able to precribe it for me (because she’s not allowed by her practice) and that this was due to a lack of evidence of it’s use with CFS. It took about a week to get the letter.
  4. I scanned the letter and emailed it to e-med.
  5. I registered with e-med (cost £20 for a year) filling out a short registration form where I was able to briefly explain my health problems. Within a few hours I had my PIN and password by email.
  6. I was then able to fill out the online LDN prescription request form. That was in the evening outside of normal working hours but within a few working hours of the next day they had confirmed my prescription. You can ask e-med on the form to send you the paper prescription, send it to a pharmacy of your choice or they will be send it to Dickson’s Pharmacy in Glasgow who specialise in LDN prescriptions.
  7. I requested the prescription be sent direct to Dickson’s Pharmacy who are able to supply LDN mail order for around £15 £17.50 a month for liquid or £27 (now more in 2011) a month for capsules. Be careful if you choose to use a local pharmacy – best to ask them to check the cost first as often it can be much more expensive.

When I need a repeat prescription I fill in the online form using my membership details on e-med’s site.  The prescription covers 3 months and costs £15 which is automatically paid for off my credit card.

I request on the form that the prescription be sent to Dickson’s Pharmacy.  They send a new bottle of LDN by registered post once they get the repeat prescription, then 4 weeks later and 4 weeks after that.  I’ve given permission for them to hold my credit card details on record so the LDN is paid for automatically when they dispatch it and it costs me £17.50 a bottle.

With the yearly membership of e-med, the prescription cost and the cost for each bottle of LDN it works out as £22.70 a month over the course of a year.

You can also access LDN through www.prescribe4me.co.uk – I understand they will do a consultation with you that may mean you do not need your own doctor or specialist support to start taking LDN.

LDN Information Links and Resources

If you want to read up some more about LDN here’s some of the sites and resources I’ve used:

ME/CFS Specific

Dose Timing

Campaigning for LDN

And here’s a dictionary entry that gives a sound file on how to pronounce Naltrexone http://dictionary.reference.com/browse/naltrexone

UPDATE 15 August 2011: I’ve updated the dose and prices in this blog post. I’ve been taking 2.5ml nightly since Dec 2009 and I have seen a significant improvement. It is not a cure, I am not back to a normal life but it has given me some relief and is worth it.  I have more energy, I recover from exertions quicker, my communication and cognitive function is greatly improved, my sleep is better (deep and sound).  For the first 6 months I felt a lot brighter and like I had more energy but my body struggled to keep up with the energy I thought I had. Slowly my routine changed and I became able to do a little bit more. It is hard to quantify the improvement which for many healthy people might seem inadequate but LDN has been the one thing that has offered routine improvement and slowly I am getting stronger.  It does not make me immune from crashes, overdoing it or flares with things like a virus – I have had a couple of setbacks.  But recovery has been easier and I am soo back to enjoying better levels of heath and ability than I was before LDN.

I continue to get my LDN in liquid form from Dickson’s who have been very good.  I had to have a break from LDN while I took strong painkillers for a back problem around May 2011 and that let me see just what difference LDN makes to my condition. I wouldn’t want to be without it.

UPDATE 16 January 2012: I’ve updated the doses in this post. I’ve been taking LDN in the mornings as well since Dec 2011.  Currently at 2ml each morning and 2.5ml each night.  I’m not able yet to quantify if that is helping but I’m not getting any side effects. I have just had a cold/virus which lasted for 3 weeks but for my husband lasted 3 days. However in the past a virus like this has lasted for 3 months so maybe there is some immune strengthening. It’s hard to know. I continue however to feel the benefits previously described. I’m looking to increase my dosage once I can get my GP to write a supporting letter for me as e-med will only prescribe up to 4.5ml daily without a letter from your doctor.

UPDATE 19 February 2013: I have been double dosing for a year and my current dosage is 2.6mls morning and night. Over the last year I have focused on trying to maximise the on the improvement LDN has given me.  I am stronger and able to do a lot more (relatively).  My ability to recover from exertions is better as well as being able to exert myself more, and push myself a little knowing I can recover better.  I still have to have rest days and plan activities but these can occur more frequently and doing more.  My suspected OI problems limit intensity and I think without treatment for that I’ll struggle to do anything that gets my heart really beating.  After doing regular exercise my heart rate at harder levels of exercise has not improved at all which adds to my theory that there is an element of OI at work.  But there’s no denying that the LDN has given me a significant and very good increase in function if within limits.  All my symptoms except for IBS are better.  I can still crash and when I overdo it symptoms come back quickly. But day to day LDN have given me much more life to enjoy.

LDN – It Helps To Read The Instructions

When I ordered my repeat (3 monthly) prescription for LDN I saw a notice on the order form telling you exactly how to find the right dosage. 

I don’t remember seeing it before and was following the guidance on the external info sheet they linked to.  Maybe this is proof that the LDN is helping as I actually noticed the instructions this time!

The introductory dose is 1.5 mg of liquid LDN for the first 2 weeks of treatment, increasing by 0.5 mg every 2 weeks until the individual find the
dose that suits them best.  If there is an increase in symptoms when taking a higher dose, it might indicate that this dose is too high.  Lower the
dose, and improvements should become apparent. The maximum dose is 4.5 mg which most people find effective and stay on that daily for maintenance.

Now that’s pretty straight forward! Oh dear me. I blame the brain fog.

So I could try going up 0.5ml to 2.5ml in a couple of weeks if I want to. We’ll see.

By the way the 2ml has been agreeing with me and although I’m finding it very difficult to quanitify any effects of LDN I do have the feeling that it’s helping.

LDN Day 58 – I’m Back to 2ml & In Other News

It seems my 2nd attempt to increase my LDN to 3ml resulted in me feeling pretty awful again.

I increased from 2.5ml to 3ml last Sunday (Day 50).

In the next week:

  • my pain (particularly neck, shoulders, face/jaw, glands) increased day by day
  • I got a bad pre-migraine head for the first time in months and that has hung around for a week
  • my IBS flared, I had stomach cramp & a couple of espisodes of exploding bum, meanwhile alternating with my constipation getting worse and by the end of the week I had some nauseau coming on

On Saturday (Day 56) my pain was “argh”. I reduced the dose back to 2ml on Saturday evening.

On Sunday (Day 57) my pain was “urgh”, my IBS was a little better. Today, Monday (Day 58) my pain is a low “derrr”.

It seems to be settling, hopefully, although I’m not clear of the pain just yet. The 3ml does seem to now agree with me too well.  So my rough plan is to take a longer term view and stick with 2ml for a while.  Maybe look at slowly increasing the dosage but not to increase whilst I have any side effects with the current dose.

It’s certainly not easy finding your optimal dose.

I’m hoping the 2ml will help me be a little more stable as I have work (art) I need to do.  I have a painting to finish, a new piece of work on a logo for a new client, some cards to make for friends/family and I want to make some Valentines cards to sell if I haven’t left it too late.

Plus make some birthday cards, wedding cards and so on to sell.  Try and keep a little trickle of income going as I still haven’t had a decision from DLA and so have been relying on my art sales to fund my suppliments, medication and so on since October.

In 2 weeks I am going to my cousin’s birthday celebration all the way up in Cumbria (about 3.5 hours from here).  They are having a  ceilidh and whilst I won’t be dancing it will be nice to meet up with family. 

I also have a dentist appointment the week before – a routine checkup but later than usual as my wonderful dentist has been on maternity leave.  My problem tooth has a chip in it which is worrying as we’re overdue and last time she filled it she said it might need root canal work if this fill didn’t work. Eeek.

Then I have a doctors appointment with My Lovely GP the Monday morning after our weekend in Cumbria to ask about treatment for something I’m not going to blog about right now, to see if she will give my Celevac on prescription as I now use it everyday with my IBS and to update her on LDN.

So you see I could really use a couple of weeks of not feeling as grotty as I have been with this 3ml of LDN!

In other news my clutter busting angel is to become my angel sister-in-law in August! She and my brother got engaged a few weeks ago and it’s all very exciting.  To celebrate at out last clutter busting session she put my wedding dress into it’s special storage box (just three and a half years after I had first intended to do it).

We are still house hunting for a new rental place.  Some of the pressure is off now we have spent the worst of the winter (fuel bill wise) in this draft energy innefficient house. Not only that but probably the worst winter we’ve ever had weather wise since living here! So having swallowed the heating bill the urgency to move is less than it was.  But we do still want to go.  The next problem is that the garden will start to grow and I can’t afford to pay anyone to come and tame it this year.  If I ever get my DLA the plan is to offer my sister in law a bit of paid work doing cleaning and gardening but I’d rather be focusing energy on a new garden.

We’ve seen a few places but none have been right.  House hunting is more difficult now not just because it’s so knackering for me but because I’m looking for a place to spend 98% of my time in.  Finding a house that is nice but a bit dark, or a bit claustrophobic, or with not much of a view of anything, is suddenly more problematic to me.  I swear I am not being super fussy!  So many of these places have such tiny bedrooms or weird layout or dodgey looking renovations or are really expensive.

Hopefully the right place will come along at the right time.  Seeing as how there’s still a lot of clutter and still a massive car boot stash of stuff to sell it’s probably a good job we didn’t see somewhere before Christmas.  It would have a lot of hard work.

There’s some ME/CFS stuff floating around for me this week which may or may not result in some wobbliness.  This is not going to be helped by probably being hormonal this week too.  But I don’t want to go into the details here and now.  Needless to say it’s the usual upset & head spinning from the quacks taking advantage of ME/CFS being in the news recently.  Whether I will keep a straight head or not I don’t know.  I did cry (a lot) at the end of a heart wrenching drama last night so I am guessing there will be a mini crisis this week at some point.  Oh well.  Hopefully there won’t be a shed load of pain to put into the mix too.

LDN Diary

6 Dec 2009 – Day 1: Begin 3ml LDN in morning Dozey, v bad brain fog, IBS/tummy problems.

9 Dec 2009 – Day 4: Switch to night time dosing of 3ml LDN Side effects lessening by Day 9 but still some brain fog, tiredness/weariness, dry mouth, blurred vision and gassy tummy. By day 14 still tired/sleepy, some brain fog. By day 18 concluded energy reserves very low and recovery not as good.

22 Dec 2009 – Day 18:  Reduce to 2ml LDN nightly Perky in the 1st week. Settled & optimisitic, ticking along at Day 30. Then by mid January wondering if lacklustre & unproductive feeling means the dose needs increasing (or is it just because of January?)

15 Jan 2010 – Day 41: Dose up to 2.5ml Slightly more tired but hard to tell as it’s January

24 Jan 2010 – Day 50: Dose up to 3ml Pain, migraine & IBS increase over the next week

30 Jan 2010 – Day 56: Reduce to 2ml nightly Extra pain begins to decrease first couple of days.


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Push It 11 Sep 2011

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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.