Forum

LDN: I've finally taken the plunge!

Did I pass?

Pat x

Hi gang…

I took my first 1ml of LDN about an hour ago.

Just putting on my running shoes… tehe only kidding…

I do feel a bit bright eyed and bushy tailed… but on other hand I did have a good night after a few bad nights (btw roadworks have finished).

Weather in London is beautiful… clear skies and sunshine…

Have a good weekend my lovelies,

Pat x

Hi Pat,

Thank you so much for the information. I have now taken the plunge (kinda)…they only deal with your application to join E-med on week days so I will have to wait until then to hear from them.

I hope you’re doing okay with your first lot.

Oonagh

Xxx

Hi Nina,

I’m not expecting miracles but it sounds like you’ve had very positive results :slight_smile: Thank you for the luck and as soon as I get started I’ll update you all with any improvments. Thank you Nina.

Oonagh

Xxx

Hi gang… well I’ve just taken my second dose!

Yesterday I felt very ‘awake’ in a sense that colours appeared brighter etc… actually as an old hippie who smoked pot for years, I’ll be honest and say I felt stoned.

I went out to the shops and felt a tad anxious… BUT of course this might have had nothing to do with LDN… I’m a bit emotional after losing Huguette so it’s possible it’s more to do with that than LDN.

By yesterday evening relaxed and had an extremely good night’s sleep… better than usual in fact.

One thing that is worrying… my bloody tinnitus! It’s bad this morning… worst than usual. I had to come off Gabapentin and Topamax because of same problem… so I’m really hoping it’s not the LDN that’s made it worse (and trust me it’s usually bad enough!).

Well… time will tell…

Have a great Sunday darlings… and well done Oonagh!

Pat x

Pat I’m glad you’re doing well and finally able to sleep again. Very overcast here in the Lakes, very thick mist. Going out to a posh hotel as a Christmas treat from a friend. Enjoy your day.

Cath xx

Pat, you take it during the day? I tke mine at about 10 ish in the evening, the doctor told me to take then.

Not 100% sure on the pros & cons of timing but I think most people do take it in the evening :slight_smile:

Sonia x

Hi Sonia, I’ve read a bit about it.

It’s best to take it in the evening but so many people find they can’t sleep that they take it in the morning. Anything can interfere with my sleep so I decided to take it in morning.

For optimum effect it should be evening.

Do you sleep ok on it? When you first started it, did you have trouble sleeping?

I’ve had a nervy, agitated sort of day and the elf is playing up… think it’s too early to blame it on ldn… I’ll just blame the elf…

Pat x

Yes Pat you passed the test! Seriously my iPad was playing silly beggars and I was checking it worked. I think it was just mucking about on facebook! Hope the LDN proves to be of benefit! Teresa xx

Frankly, I was expecting Pat to have run up Alexandra Palace at least twice today, but perhaps it’s still early days.

I hope that nasty problem settles down soon.

Pat,

I take Amitriptyine, so no problems sleeping at all and wake up feeling fine :slight_smile: I’d imagine if you take anything to help you sleep, you’re unlikely to have any problems with it :slight_smile:

Hope you get on ok with it and elf behaves :wink:

Sonia x

Hi Sonia, I also take mine in the morning. I started as per instruction leaflet, taking it at night. I have terrible problems sleeping at the best of times…even with sleeping tablets. A week after starting the LDN I’d had so little sleep I was contemplating stopping but my husband emailed the chemist that sends it to me and at their suggestion I started taking it in the morning. I think I’ve said before that I’m really pleased with it …bladder and bowel problems had become a total nightmare…now although they’re not perfect there is nevertheless a world of difference. So in my case…and hopefully in Pats…it didn’t cause a problem. Take care, Nina x

Hi Pat, I really hope the tinnitus getting worse and your off day are down to the elf…we know how stress and emotions can cause the little creature to run riot! Think it was 2 maybe even three weeks before I saw any improvement and maybe three to four months before it became a mega improvement. Hang on in there if you can but if you have any qualms maybe you could contact Dixons as we did? Take care, Love Nina xx

I’m hanging on in here folks.

Couldn’t get to sleep last night till about 3am… but I do have nights like that. Even with taking Amitriptyline I get a night like that about once or twice a week.

I’m feeling not too bad this morning and tinnitus is at a lower volume than it was yesterday and at lower pitch.

I’m not going to give up on this…

Thanks all for such lovely supportive messages,

Have a good Monday… very grey and damp in The Smoke,

Pat x

Hi Pat

Your sleeping pattern sounds very much like mine, we could be owls in another life!

Hope your ldn proves a benefit for you, so hang in there. At the moment I am trying to hang in there with propranalol, but I cant see me ever getting to the amount the ms nurse wants me to, but hey ho,if nothing else I will have done my best.

Misty, damp and not nice down here in Gloucestershire today, take care.

Pam x

Pat I’m glad you’re getting some effect. Tinnitus would drive me mad, I’m really sensitive to noise and can’t cope with crowds, or where there’s voices or noises from different sides. Every sound gets magnified and stresses me out. It must be a huge relief for you. I hope you can get into a regular sleeping pattern.

I’m worth noting if I don’t get my sleep, I see you struggle too Pam. Is it an ms problem do you think or just the way you are?

Cath xx

Hi Cath,

I reckon is a ms problem, cos the vibrating jerks, spasms etc is always worse at night for me, and that seems to keep me awake. Its almost like switching a light on when bedtime coomes, I put it down to being able to find distractions during the day, but cant do that in bed.

The ms nurse and gp want me to increase ami and baclofen as well as this propranalol, but I dont tolerate medication very well, so at the moment I am trying, but it is difficult. It would be lovely to have medication that gives no side effects, but I think that is only a pipe dream.

Hope your doing ok, take care.

Pam x

What dose of amitriptyline are you on? I take 50mg at about 7pm and am usually ready for bed at 10ish. I had insomnia a few years ago and still keep in mind what I learnt then e.g. no tv, book etc in bed, that’s for sleep. No computer, games etc before bed, you need at least an hour doing something quiet to relax. If I’m not asleep 30 mins after going to bed I get up, sit and read and then try again.

It sounds daft but the longer I stay in bed awake the more stressed I become. Since I’ve been ill I only get sleepless nights if I’m in pain. It’s not surprising when you see how much medication I take. I had CBT though and that’s where I learnt better habits. A regular bed and rise time and very rare afternoon naps help.

Hope you get sorted. Cath xx

At the moment I take 20mg at 8pm and go to bed approx 10.30 but quite often I am still awake at 12.30. He wants me to get up to 40mg but when I increase I feel like a zombie next day, so its a catch 22 situation.

I will try again, but not until I have got my body used to taking this propranalol. I just hate all this medication, wish I had a majic wand! lol

Take care

Pam x

Glad you’re sticking with it Pat :slight_smile:

I take 35mg of the Amitriptyline a the mo. I get 25mg & 10mg tablests I have a bit more control over dosage and at the weekend or just if I’m extra twitchy, I have the option to take 45mg, I take mine at 8.30

I’m down to 10mg a day of Baclofen so I want to speak to my doctor about something else, the weakness is a problem for me.

Hope everyone’s well :slight_smile:

Sonia x