Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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sleep meds - cant get melatonin thro NHS

Discussion in 'Sleep' started by NelliePledge, Jul 20, 2017.

  1. NelliePledge

    NelliePledge plodder

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    having had increasing problems with my sleep over the last several months I finally decided to pluck up the courage for a discussion with my GP

    I currently have a prescription for 1or2 10mg amitryptiline a night. At first about 20 months ago when I just got diagnosed and started taking them I was off sick. It was such a relief to be able to get off to sleep and I put up with the extra zombie feeling in mornings as to be honest I wasnt getting up until late morning anyway. I soon realised that 2 of these things was far too much for me (I seem to get the zombie effect on very low doses of meds eg 25mg pregabalin rather than the normal 75mg tablets) Then I picked up a tip to take the tablet at teatime and I was zombyish until 10 rather than 11/noon. Of late Ive been getting nights where I sleep at 5/6am or not at all. So I tried taking a break from amitryptiline or doing them alternate nights. But doing that hasnt made them any more effective and I still dont sleep well whether I take the amitryptiline or not maybe getting off to sleep 3 or 4 if I do take the tablet. I do have some better nights but it is probably one in three when I have got so tired I have to go to bed early evening and sleep for 8or 9 hours.

    I decided to ask about melatonin because Ive heard from some people on the forums I frequent that it works for them. I looked on the NHS website which says this about melatonin
    Melatonin (Circadin)
    For adults aged 55 or over, a medication called Circadin is sometimes used to help relieve insomnia for a few weeks. It contains a naturally occurring hormone called melatonin, which helps to regulate the sleep cycle.
    Circadin is usually only recommended for three weeks at first, but it can be continued for a total of 13 weeks if it helps.

    Im not actually 55 yet but I will be next birthday so based on the website info thought there could be a good chance that I might get it.

    What a fool I feel - my GP said she has also had someone with Parkinsons asking about Melatonin. But it is -in my area anyway -only available through a specialist. In my area the "specialist CFS/ME" clinic no longer exists and didnt have any Dr attached to it anyway it was Physios/OTs and Psychologists. So I asked about sleep clinic as I know some people with ME have had help- in my area you can only get referred if you have suspected sleep apnea. Apparently the community pain service which is where ME/CFS people’s referrals go these days use a medication called Dosulepin which is for pain but can help with sleep and my GP asked if I wanted to try that.

    Im fuming really I feel like every time I bother engaging with NHS about ME it is a complete waste of time. My GP is a nice enough woman but just doesnt have anything to offer. :bang-head::bang-head::bang-head::aghhh::aghhh::aghhh:


    ok so kind friends I have two questions
    1 has anyone heard of or taken Dosulepin - Ive not yet looked it up so any info helpful
    2 has anyone in the UK ordered Melatonin online from a reputable pharmacy off prescription

    thanks for listening and any advice very much appreciated
    N:grumpy:
     
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  2. Alvin2

    Alvin2 If humans were rational...

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    I assume its not available without a prescription in the UK?
    In Canada its sold in health food stores, and if you can legally buy it online many websites sell it and its not expensive.
    Also black cherry juice is high in melatonin, but i think you have to get the right species of cherry juice, you can google it.

    Finally some of the drugs your taking can be habit forming and can have discontinuation symptoms so you may have to wean off them to determine what effects they are/aren't having and wait till your off and stable before trying something else so you can determine whats really going on. That you will have to google and research as well.
     
  3. Wonko

    Wonko Senior Member

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    The other side.
    I've just checked and amazon.co.uk still have vendors selling melatonin, price seems to have tripled since the last time I bought any (about 5 or 6 years ago).

    Melatonin isn't a long, or even medium term solution to sleep problems tho, at least not in my experience, it only helps for a week or two.
     
    MEMum likes this.
  4. Arise

    Arise

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    I am in a similar situation to you with regards to sleep. I generally don't have too much trouble falling asleep but the quality is poor. I often wake up too early then fall back to sleep but this sleep is very light. I was initially prescribed amitriptiline, what I found was that it often helped me stay asleep a little longer or I was falling back to sleep very quickly and not remembering. The sleep quality in general was still poor, it also had a side effect of causing depression if I were to take it more than two days in a row. One of the problems for me with regards to amitriptiline was that it would leave me feeling groggy/sleepy during the day, this is probably not suprising since I checked the half life to be can up to 50 hours.

    I have now recently been prescribed dosulepin which is another antidepressant. So far it is too early to say much as to how it compares with amitriptiline. The only thing I can say is that it gives a more drowsy/sedatative feeling as opposed to sleepiness if that makes sense.

    As others have mentioned you can buy melatonin without prescription quite easily online, I use iherb they have cheap shipping and because it is relatively inexpensive you won't get hit with tax or handling charges as long as your order value is below £15. I personally tried 3g of melatonin and it had absolutely no effect on me.

    I suspect that GPs are more keen on giving antidepressants if they know about your history with ME or other illnesses that are put in a similar bracket. It may be because that they think BPS factors might be driving some of the symptoms or to keep you away. Of course this is just me speculating so don't take it as truth.


    Hope this helps
     
    MEMum likes this.
  5. maz

    maz

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    Folkestone UK
    Melatonin gives me restless leg syndrome, which I am prone to. I was ok with it until I was 53. I bought it online as mentioned by others. Nytol and phenergan (promethazine) also gives me RLS but used to work. I took amitryptiline for a while a few years back and it was great at first, then it started making me incredibly sleepy in the daytime and i couldn't function. Coming off it was a nightmare - muscle pain, confusion and feeling wired, it was a nightmare! I know not everyone reacts the same, but it's worth bearing in mind. Lyrica can help me sleep and also stops RLS but if I take it daily, it causes the worst brain fog ever, plus lots of odd tender points all over my body, legs and feet. The good news, for me at least, is that 2 or 3 valerian works and so does zopiclone, which my GP prescribes (14 per month). I try to alternate what I take to sleep so I don't build resistance.
     
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  6. mermaid

    mermaid Senior Member

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    I bought Melatonin online for my adult son who had sleep disorder and it worked very well for him for quite some time (like months). I think he had to take more than 3mg though. I think I got his via Biovea UK.
     
  7. Jenny

    Jenny Senior Member

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    London
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    MeSci and Little Bluestem like this.
  9. NelliePledge

    NelliePledge plodder

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    thanks all
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Melatonin from iherb or ebay??
     
  11. Basilico

    Basilico Florida

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    You might want to consider taking a low dose (1/2 pill = 5mg) of Baclofen. It's a very mild muscle relaxer commonly prescribed to MS patients. It doesn't work for my muscle spasms at all, but since it's a gaba agonist, it does help me to have very deep sleep. It's not a sleeping pill, so it won't make you fall asleep. It's generally well-tolerated and doesn't have any abuse potential, so doctors (at least in the US) are pretty happy to prescribe it.

    I take it when I start having restless sleep and it does a good job. I do sometimes feel a bit groggy in the morning, but I've found that the grogginess wears off pretty quickly (more quickly than if I'd taken Benadryl) and I can reduce the grogginess by taking it earlier in the evening, rather than right before bed. Just something to consider.
     
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  12. perchance dreamer

    perchance dreamer Senior Member

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    Baclofen helps my sleep, too.

    With the melatonin, you might have to experiment to see what works best for you. For me, 1/2 MG of a time-released melatonin is best. Some people do well with much higher doses and an immediate release form. I would start low and go slow.

    Here's the one I take. I cut it in 1/2 so that it's only .5 MG:

    https://www.amazon.com/Jarrow-Formu...d=1500658842&sr=1-1&keywords=jarrow melatonin
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Baclofen i find helps sleep quality but not great at initiating sleep.
     
  14. Hilary

    Hilary Senior Member

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    Does anyone know if Baclofen is available in the UK?
    Also, does anyone take doxylamine succinate for sleep? My problem (as so many others have) is not so much falling asleep - although that's sometimes an issue - but staying asleep and getting decent quality zzzs..
     
    MEMum likes this.

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