Hi all, I’m on 10 mg of Amitriptyline in morning and 25 mg at 6.30 pm.
Day 3 of LDN report: (1 ml in morning)
Extremely bad fatigue meltdown in afternoon. Couldn’t move. Was really bad.
Later I googled and found one forum that said it can happen at first and that it’s a good thing as means the LDN is making an impact (hope so).
Legs feel weak, I’m light-headed and balance is wobbly… but hey that’s pretty much daily stuff anyway.
The best news is that today… all day… my tinnitus has been of much lower volume and pitch… hasn’t been this ‘quiet’ for years! Noticed the difference as soon as I woke up.
The important thing is to get to tolerate the drug first and you might benefit from a slower approach, so if you continue to feel worse don’t hesitate to reduce the amount to .5ml. While it is possible to plough on and come out the other side ok, why struggle unnecessarily?
Not sure what sites you are reading, but best to steer clear of the American ones, because they think differently about ldn over there.
Nice to hear the tinnitus has settled down and hopefully, it was unconnected.
Thanks… Whammel I’ve had the tinnitus for years… started about 7 years ago & gets worse when symptoms are bad… is one of my most distressing symptoms actually so getting reduction in volume and pitch is really something.
If fatigue is bad tomorrow I’ll go down to .5 ml. Thanks for that. The doctor said to start on 1.5 ml but I took your advice and glad I did.
Far too many people have given up on ldn over the years, because they have difficulty tolerating the drug, when simply slowing down the introduction can often help. I wouldn’t suggest it now, but if the problems persists, it might be worth taking the drug at bedtime and see if you sleep through the dodgy effects.
Fortunately, introductory symptoms normally settle down after a couple of weeks, or so, and hopefully, it will be the same for you.
Pat, I took 1ml to start and increased by 0.5 ml every week to ten days depending on how well I felt I was tolerating it. So pleased about the tinnitus hope it continues to improve …it must be a nightmare. Hope fatigue is much better tomorrow. Nina x
I tried 3ml again for a week or so, and dropped back to 2.5 again yesterday - I don’t intend to budge again
2.5ml is enough, simple. Whammel’s right some of the Americans are a little uncompromising about things they’ve heard… not necessarily from reliable sources! (Whammel, I’m guessing we use some of the same groups on FB)
Yep, you are quite Sonia, although I do get a bit of friendly fire from across the pond occasionally and rarely bother to post these days. They tend to have very fixed views on use with DMD’s and timings, which is simply not backed up by the medical professionals in the UK. Since there is no hard evidence either way, I am inclined to believe what users tell me works. Fortunately, ldn is highly unlikely to do any harm and experimenting a bit is often the answer.
Glad to hear you have settled on a dose that suits you best.
Unfortunately woke up with tinnitus back up to high level and has remained the same all day.
Had bad but brief episode of ‘hug’ this morning & still got some tightness around ribs (a regular symptom for me).
No gasto intestinal trouble which doctor said I might get (I take med’s for acid reflux), but am constipated more than usual.
Otherwise not too bad… and no more major meltdowns. Fatigue levels pretty normal.
Mood quite good.
Whammel… I was going to wait till Saturday to go up to 1.5 ml but I’m now thinking of doing it tomorrow… would like your advice? Wait till Saturday or do it tomorrow? (I started last Saturday).
Pat, if you feel that the drug has been tolerated ok then the chances are you will be perfectly fine, as most people are unless sensitive to medication. Personally, I would stick to the plan and look to increase on Saturday, because there really is no rush.
Should you increase too early and start to feel worse, just stop taking the stuff, or reduce the amount, so can’t possibly do any lasting damage.
I took the plunge two weeks ago. The first week on 1.5 was encouraging I was energetic and cheerful. The second week mmmm not as good taking the same dose. I have increased the dose to 2 this week as directed on the bottle from Dicksons. I feel ok but not as good as the first week. Maybe it was a bit of excitement that I had found something I was comfortable with as all the information I had read was positive. I also read a book "Talking back to MS by Eliabeth J Rhodes …worth reading. I am glad you have taken the plunge I will follow your progress
I took the plunge two weeks ago. The first week on 1.5 was encouraging I was energetic and cheerful. The second week mmmm not as good taking the same dose. I have increased the dose to 2 this week as directed on the bottle from Dicksons. I feel ok but not as good as the first week. Maybe it was a bit of excitement that I had found something I was comfortable with as all the information I had read was positive. I also read a book "Talking back to MS by Eliabeth J Rhodes …worth reading. I am glad you have taken the plunge I will follow your progress
The instructions on the bottle are only a general guide and how you feel is far more important. Try reducing the amount to 1ml for a couple of weeks before looking to increase by .5 and see if that suits you better.
A slower introduction is often the right approach.
Yesterday was great. Felt really good. Went out on scooter round the shops and had good time… although tinnitus was still loud. Didn’t feel so great in evening… but it’s never my good time.
Today not good at all. Very weak and buzzy all over. Very poor mobility. My sister came over… bless her… and went out and got us fish and chips. I wasn’t up to anything. Still feeling rotten now… but strangely tinnitus is a bit lower.
Really just feels like a normal ‘bad MS day’ so don’t think I can blame LDN.
Still going up to 1.5 tomorrow and see how I feel.
I spoke with my neurologist yesterday on the phone about the rotten time I’m having with Baclofen… during general chit chat I told him I have been taking LDN and whilst only really time was going to tell that I felt it as the kindest drug to my body and that I would continue with it as there were so little, if any, side effects.
My neuro is quite conservative but he did end up agreeing tht I was right in saying that it was a “kinder drug” than most of them, so that did make me smile.
Pat, I hope you feel good over the weekend with your new doseage
