LDN Low dose naltrexone

[Renwick1]

Hi everyone I was wondering if anybody has tried LDN low dose naltrexone which seems to have good results for a lot of things,I welcome your reply and wish everyone of you suffers all the best in life because this fnd is a terrible thing to try and live with.

[thinkin]

Hi,

There is not enough research on it generally for it to be recommended. Unfortunately there is no panacea for FND. If the research is promising I'm sure our consultants will recommend it or considerate for clinical trials. We always have our eyes and ears open for something that will help. Unfortunately there's no short cuts and we have to treat our FND from a holistic approach.

[Renwick1 in reply to thinkin]

Ye that’s true but how long would 1 wait for gps to prescribe what’s out there when most sit on the fence ,any thing that works is better than nothing.i also am at the end of my tether with this fnd thing.

[thinkin in reply to Renwick1]

Is it for pain relief or generally? I think it's a difficult thing to get from a GP, even though it is proving mostly harmless. Mind you it's hard to get a GP to prescribe/do anything once diagnosed. Mine didn't even suggest anything when I was suicidal, the Prof said it was for my GP or A&E. Fell right between two stools so that I began experimenting with myself.

What's bothering you the most?

[Renwick1 in reply to thinkin]

So many body agitations going on and getting worse so I knew about this LDN for 2 years but every med professional wouldn’t take me on ,but after a lot of research I’ve been accepted for prescriptions out with my own gps and am going to give it a try as I’ve exhausted all other avenues

[thinkin in reply to Renwick1]

Well I suppose if they will prescribe it it certainly won't do any harm at least and with the placebo effect it has a 50% chance of working to some degree. I hope it helps you. If you do have some improvements I wouldn't do too much. I've had my chances ruined by thinking I'm cured/ getting better, done too much in my enthusiasm and ended up back at square one.

Have you made sure your GP has checked your vitamin B12 and D? They need to be above 500, but GP's report "normal" when they are not high enough for us. I've also found that a high dose of B6 helped my mood as it helps form serotonin which I take with the whole range of B vitamins as they work as a complex and taking more of one can lower the levels or efficiency of another. Sunshine also helps form serotonin and helps regulate sleep.

Also if you have migraines or any other conditions they need treating to an optimum level. I found CBT for sleep helped me a lot. Sounds really basic and to tell you the truth I thought that I'd never get a sleep routine back and now I can easily see how a bad nights sleep really impacts on my FND.

I'm five years in and I've had start from scratch about a year ago, stopped going out, really made myself pace. Not easy for a chick as hormones just add another element. I've taken supplements for my thyroid, aspirin for my migraines (I don't get headaches which doesn't help spot them and I mostly have them in my sleep which you wouldn't think would be a problem, but I wake up hallucinating or because I've stopped breathing), I take vitamins sublingually as I've gastritis and don't absorb them through my gut. I've had to look at every element and be really strict with myself.

Prepare yourself mentally incase it doesn't work. I hope it does, but you sound frustrated and that comes from depression. There is no one answer, you still need to take a look at everything. Good luck and let us know how you get on.

xx

[Renwick1 in reply to thinkin]

Think it’s still worth a try,can you enlighten me as to how you know you’ve got migraines with no headache and what symptoms they produce, thanks

[thinkin in reply to Renwick1]

Hi,

I've had the migraines for donkeys's years without headache and I got misdiagnosed with MS and on second opinion I saw a Prof who diagnosed me with basilar type migraine. I did get them to clear up after 15 years of misery, but taking 5HTP to see if it would help my depression seems to have triggered them again.

The hallucinations are common in migraine, but people are too afraid of being thought mad to discuss them. On waking in the night they can be anything from fuzzy blocks that look solid, to someone standing by the bed, marching on the spot. Or sometimes I get kaleidoscope images. When they have candy crush sweets in them I know I've been playing it too much Usually there's a pounding in my head with it like my blood is pounding in my ears. Sometimes it's a flickering in the corner of my eyes or if I am awake a fuzzy spot in the centre of my vision. Occasionally I get the classic flickering zigzag lines, but not very often.

I have nausea and irritability. I don't get the hemiplegia that I used to get, but I do get a right sided trigeminal numbness that I used to get. It can really make my mood drop or it can completely floor me. I have swallowing problems and I have trouble breathing so it takes me more effort to inhale, if that happens at night I wake up feeling I'm being suffocated.

It responds well to aspirin thankfully. I just wish the FND would go away that easily. I should have realised when the Prof I'm seeing now said that not all my symptoms were distractible that I had actual neurological changes on examination, but I hadn't had them for so long I didn't realise. I do have FND, but I also have migraines. Migraines make you more prone to functional problems. Oh joy.

Have a look around the internet about migraine without headaches or silent migraines. Good luck with your LDN.

[Sorta]

I have been on LDN for 9 months now and it has changed my life tremendously! I really don't know what I have... Went to the Mayo Clinic and was diagnosed with fibromyalgia and CFS and possible functional tremors. Anyway I did research on LDN and its effects on patients with fibro and CFS in case study showed that it has a significant Improvement in pain levels in fibro patients. I'm lucky enough to have an awesome primary doctor who is willing to read research that I bring her. She had never heard of LDN to treat these types of diseases but she called the compounding pharmacist and found out that it's often used for other autoimmune diseases like Crohn's disease and even lupus. So she was willing to give it a try. It took about 6 weeks for me to notice improvements but my pain levels decreased dramatically, I sleep much better, and my crashes are much shorter. My post activity crashes used to last two to three days and I would be bed-bound and now after a busy Sunday morning at church... I am a pastor... I come home and take a 3 hour nap and I can function again in the evening. I would say that LDN has probably improve my Quality of Life by 40% from where I was a year ago. If you can do your research and find some of the studies done by the NIH and show it to a doctor who is willing to listen to you and work with you. It really has virtually no side effects, it is fairly expensive and I am amazed by how much I has improved my life. Good luck!

[Junebeatle]

Hi,

I started ldn for Autoimmune disease, but it did give me remission of my FND for 19 glorious months! I thought I was cured, but end of April I got a GI virus from my kids & a cold the same week which left me with SIBO. I’m not sure why it happened, but boom involuntary movements back (mine are like tics) anxiety, depression, no ability to think or plan. Good luck! 🍀

[Renwick1 in reply to Junebeatle]

Hi sorry to here that ,did you continue using LDN or did you stop

[Junebeatle in reply to Renwick1]

I’m still using it as it keeps my autoimmunity in remission. 3.5mg is what I take nightly at 9pm. I think my gut being a mess currently is responsible for a lot of what’s going on with me. After treating SIBO with antibiotics I had acute gastritis that I had to go to ER for. I see GI this week for follow-up.

[Justdrea81]

I know this post is older, but I just found it. I'm going to start ldn for my auto-immune stuff, and hope it will help the fnd stuff as well. I start my first dose tonight, but I know it can take a month or two in order to take effect.