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sue1234

Experience with Mestinon or LDN?

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I am going to my internal medicine doctor tomorrow, who is also a functional medicine doctor.  She manages my thyroid meds for me, because they end up making my TSH look low and hyper, but my free Ts in the normal range.  She gets that that is my "normal", whereas any other doctor thinks I'm hyper and wants to lower my thyroid dosage.  I've tried that before and become so sluggish.

Anyway, she is kind of open to trying things, even though I haven't tried anything in over a year.  I've come to the conclusion that I think my POTS is most likely autoimmune based.  I was wanting to try LDN to see if that would help that aspect.  The only thing is I read it can cause insomnia, which I have chronically, so take a low dose of Xanax at bedtime to help.  Does anyone  of you have experience being on both Xanax and LDN?

Also, I would like to see if Mestinon would help mainly my sluggish g.i. system.  I stay so bloated, I cannot stand it anymore.  It is like blowing up a balloon and then placing it inside my abdomen.  Which, is kind of what happens.  Apparently I make a lot of gas, but it rarely comes out.  I wouldn't mind the bloating except it pushes up onto my rib cage and diaphragm, causing me to be short of breath and tachy sometimes. When I do have a few days where whatever is allowing me to pass gas, I feel so much better(one of the very few benefits of staying home most of the time alone!).  I just need something that will allow things to move on through on a consistent basis.

So, any advice on which to ask to try first?  I may eventually try both at some point.  I'm thinking of trying the LDN first, and maybe that will alleviate whatever is gripping my intestinal system and keeping it from working.

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I cannot speak to LDN but I have tried Mestinon for my gastroperesis before. It worked really well for about 6 weeks and then fizzled out unfortunately. While I was on it though I actually had audible bowel sounds, something that had not been heard in almost a year. It did speed up my GI system but I had extreme migraines from it that made me not feel like eating, which was kind of the whole point lol! All in all I'm glad I tried it just was not the drug for me. I find Domperidone to be a better motility drug for me at least. I hope you are able to find something that will help you.

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Thanks!  I saw my doctor this morning and I am going to try Mestinon in a couple of weeks.  I'm hoping it works long term.

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Hi Sue

My son and I have both been on 3 mg of LDN for almost a year. My son had no troubles with sleep but I did. It only lasted a week and then I started sleeping through the night. It does work with the immune system and helps with autoimmune diseases. It has not made POTS symptoms worse for him. After being on it for 8 weeks, my son had no more chronic pain issues, no severe scalp pain or daily headache. He has been pain-free for a year.  I started taking this medication last October for pain. I learned that I had a high ANA and high inflammation markers. Recently I found out that I have ortho arthritis and this is most likely why I was in so much pain. BTW my son takes Extended Release Clonidine for sleep. The LDN was no help with sleep issues for him but for me it was a different story. I sleep like a baby. LDN is a medication that I think we will both always need. 

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Thanks, Looneymom.  I will keep all those benefits in mind when I try it in the future.  I will be starting Mestinon this weekend.

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A concern about Mestinon is that some people do not have the gene to metabolize it and it then causes acute neurological symptoms.... including peripheral neuropathy.

All American service people serving in the Middle East were given this drug prophylactically to guard against nerve damage from toxins.  All 100,000+ victims of Gulf War Disease were found to lack the gene, where no veterans with this gene had GWD!

Took decades of research with a concerted infusion of funds to determine this.  So, be cautious. Also think about what a similar effort might do for the understanding and treatment of dysautonomia.

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Sue,

How goes it with the Mestinon?  I'm on it but it hasn't affected my bowels at all. I'm prone to diarrhea and my bowels moving too fast and this med hasn't caused anything to get worse. It does help me a bit with my hear rate for 2-4 hrs per dose. I'd like to hear how you do on it. I hope it's a good weather report! ☺

Katie 

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I've taken it yesterday and today, so far.  I was prescribed 60 mg. once a day.  I took 15 mg. x 2 yesterday, just to make sure I had no weird reaction.  Today, I took 30 mg. this morning, and 15 mg. this afternoon.  So far, nothing different that I can tell on any front.  Possibly it makes me a tiny bit tired, but that could just be me going through a phase not related to the medicine.  I usually have side effects to EVERYTHING, so this is kind of strange to notice nothing.

Because I am a constipated type, I was hoping it would speed the bowels up, even a little, but no difference yet. 

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I take Domperidone for my Gastroparesis. It is the only thing that works for me. I follow a low fat diet, eat small meals and take Domperidone 4x a day. The unfortunate thing is I have to get it from Canada as it is not approved in the USA. I actually take Mestinon 3x day for my Orthostatic Hypotension Dysautonomia. It helps a little to keep me upright, but it is actually Midodrine that keeps me walking.

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On 22/07/2016 at 2:54 PM, Sylvie33 said:

A concern about Mestinon is that some people do not have the gene to metabolize it and it then causes acute neurological symptoms.... including peripheral neuropathy.

All American service people serving in the Middle East were given this drug prophylactically to guard against nerve damage from toxins.  All 100,000+ victims of Gulf War Disease were found to lack the gene, where no veterans with this gene had GWD!

Took decades of research with a concerted infusion of funds to determine this.  So, be cautious. Also think about what a similar effort might do for the understanding and treatment of dysautonomia.

what gene is that?

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Could you update us on how the Mestinon is going as far as benefits and side effects.  Has it affected your sleeping in any way?  What is LDN, I am not familiar with that medication?  Praying that you are having good results.  elizabeth

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valiz- LDN is low dose naltrexone. I haven't had any poor effects on my sleep from the mestinon although I'm still on only one dose in the AM. I see the neuro at the end of the month and will likely increase the frequency after that. 

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Hi all

I have been on various amounts of Mestinon for over a year now - anywhere from 60-120mg per day, currently 60mg. It helps a little with keeping my BP up, helps some with muscle fatigue in my legs which were giving out quite a bit prior to starting it (Mestinon originally used for myasthenia gravis), and also helps some with GP although I still use Mirilax as needed and find myself somewhere between terrible constipation and worse IBS (only possible with Dysautonomia?). Mestinon never had a negative impact on my sleep.

Good luck!

kaitlyn

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Looneymom, are you and your son still taking LDN? Trying to get input from a few here on this site. I’d like to take it for pain as you are (were) doing, but I’m not sure how it would effect my autonomic issues. What type of doctor gave you a prescription?

Thanks for any input you can provide.

Terriann

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Terri, I take LDN (2.5 mg per evening) and it helps me quite a bit, and I dont know why. I have primary autonomic dysfunction ---I saw a doctor who thought that there was an autoimmune component and put me on this.  I saw an integrative doctor --any doctor can write for this. 

 

Good luck!

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On 7/22/2016 at 11:54 AM, Sylvie33 said:

A concern about Mestinon is that some people do not have the gene to metabolize it and it then causes acute neurological symptoms.... including peripheral neuropathy.

All American service people serving in the Middle East were given this drug prophylactically to guard against nerve damage from toxins.  All 100,000+ victims of Gulf War Disease were found to lack the gene, where no veterans with this gene had GWD!

Took decades of research with a concerted infusion of funds to determine this.  So, be cautious. Also think about what a similar effort might do for the understanding and treatment of dysautonomia.

Can you tell me more about this?? Or how to get more info on it? I had terrifying nerve problems on a mestanon trial, and some of the symptoms have continued. Have been curious about it ever since. I have wondered if it was an indication that the underlying issues for my autonomic neuropathy were neurotransmitter driven... but perhaps it's something like this instead??

 

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