Anti-convulsants - Pregabalin and Gabapentin

[Helen]

Is choline unproblematic with our ME issues? Or with MCAS or muscle problems?

I just read up upon choline on Wikipedia and it was stated that

Quote: "Methionine and folate are known to interact with choline while homocysteine is undergoing methylation to produce methionine. Recent studies have shown that choline deficiency may have adverse effects, even when sufficient amounts of methionine and folate are present".

I don´t know about MCAS, but I believe it should help to take choline. Wasn´t there a study that showed that PWME are low in choline?

 

[Helen]

Choline is usually high in ME and in FM, so I'm not sure it'll help

Interesting. I didn´t see that. I find all those high and low numbers confusing as we don´t know if the substance is just floating around in blood because of some abnormal conversion or uptake that is happening in PWME. Tissue saturation is seldom possible to meassure. Just a thought. My doctor prescribes me choline for a similar kind of nerve pain. FWIW.

 

[adambeyoncelowe]

Interesting. I didn´t see that. I find all those high and low numbers confusing as we don´t know if the substance is just floating around in blood because of some abnormal conversion or uptake that is happening in PWME. Tissue saturation is seldom possible to meassure. Just a thought. My doctor prescribes me choline for a similar kind of nerve pain. FWIW.

That is interesting. From what I understand, the excess choline appears to be at the front of the brain. I also know that I get significant respite from some anticholinergics.

Perhaps it's like serotonin? Some patients have too much, some too little, and others a 'normal' amount. ME seems to whack everything all in one go, so it's unsurprising to me that lots of things go wrong in different ways, and this really depends on each person.

 

[Inara]

Thank you @adambeyoncelowe for all the information! I will look at it. It's all very helpful.

Also thank you very much @Helen for your hint with choline. Spontaneously I thought "Wait, there was something" - and I recalled my allergy-like (or whatever) reactions to Progestan. One of the components is (amongst oil, titan dioxide and gelatine - yum yum) (3-sn-Phosphatidyl)choline from soy beans. I can only guess that my reactions were due to this choline from soy beans, but if it's the choline itself or the soy beans (-> MCAS) I cannot tell. I can just say that these reactions were pretty bad. So I feel a bit unsure...Although I would probably give it a try.

Honestly, although Pregabaline helped with pain, I don't have a good feeling (don't ask why). So I'll stop it today. If the pain returns I shall try a lower dose (maybe 12,5mg) - because if 25mg help immediately, maybe less will be enough, too. But I am also strongly considering clonidine and probably choline.

@adambeyoncelowe, would clonidine have an influence on orthostatic intolerance testing (via tilt table test)? Or isn't this relevant in case of short-time usage?

 

[adambeyoncelowe]

Thank you @adambeyoncelowe for all the information! I will look at it. It's all very helpful.

Also thank you very much @Helen for your hint with choline. Spontaneously I thought "Wait, there was something" - and I recalled my allergy-like (or whatever) reactions to Progestan. One of the components is (amongst oil, titan dioxide and gelatine - yum yum) (3-sn-Phosphatidyl)choline from soy beans. I can only guess that my reactions were due to this choline from soy beans, but if it's the choline itself or the soy beans (-> MCAS) I cannot tell. I can just say that these reactions were pretty bad. So I feel a bit unsure...Although I would probably give it a try.

Honestly, although Pregabaline helped with pain, I don't have a good feeling (don't ask why). So I'll stop it today. If the pain returns I shall try a lower dose (maybe 12,5mg) - because if 25mg help immediately, maybe less will be enough, too. But I am also strongly considering clonidine and probably choline.

@adambeyoncelowe, would clonidine have an influence on orthostatic intolerance testing (via tilt table test)? Or isn't this relevant in case of short-time usage?

I'm not sure. It might make it worse, as I think it may reduce blood pressure? You'd be best off discussing your personal circumstances with a doctor who's knowledgeable. Sadly, those are few and far between.

 

[Inara]

I'm not sure. It might make it worse, as I think it may reduce blood pressure? You'd be best off discussing your personal circumstances with a doctor who's knowledgeable. Sadly, those are few and far between.

Ah, I forgot I thought that when I heard "against high blood pressure". Especially at night my blood pressure is normally low.

Yeah, discussing it with a doc... see above. I'm gonna talk with another doctor about it in some weeks. Let's see.

 

[Anna]

I have been on pregabalin for around 18 months now. At first, it knocked me out completely. It helped with the pain quite a bit and I was desperate to find something to ease the pain. I felt like I was on valium 24/ 7 at first. I did seem to adjust to it though somewhat and it does not knock me out quite as much as it used to.

The effect did seem to wear off a bit after a while, and a few months in I was back taking co-codamol in addition to pregabalin. The doctor wanted to up my dose but I did not want to as from all accounts it is a drug that you become accustom to and keep needing to up and up to get the same effect.


I decided to give CBD oil a try and that really worked for me and I was able to stop taking co-codamol completely. I now have pregabalin ( sorry can't remember the dose just now) and CBD oil and find I am able to manage my pain better than I used to.

 

[Inara]

Thank you, @Anna!

I have tried CBD oil. What dose do you take? I will try again and "play" with the amount.

I didn't take Pregabalin yesterday (again, experimenting), and it seems the pain is returning, but today very low. Today I feel wired, although I didn't sleep well. It's not a positive "wired" feeling. Hm...

I also spoke briefly with another neurologist about this topic. She, too, told me "it's in my head", i.e. psychosomatic. Well, no, it's not in my head, she said, the pain is most probably really there. Yeah? Thaaaank yoooouuuuu.

I am more and more shocked. This psycho crap is like a parasite that multiplies infinitely and destroys the brain. Because, those people obviously cannot think anymore, let alone think logically. She said it's either psychosomatic (due to the fear I maybe had before the ENG? right. that must be it. It doesn't matter I don't feel fear, it certainly was somewhere in my subconscious, it must have been) or due to my underlying illness - which is certainly right in that sense that the ENG triggered something. Otherwise, that's highly improbable.

Besides believing - which I don't in this case, so I'll leave that out - there are only two possibilities:

Event A: pain due to ENG (e.g. ENG as trigger),
Event B: pain not due to ENG; pain due to underlying illness (here ME), i.e. it's a symptom that would have occurred nonetheless.

Both events are independent and disjunct, i.e. P(A) + P(B) = 1, where P(•) denotes the probability for event A and B, respectively.

Event B means in fact: The symptom occurred right after the ENG, but would have occurred nonetheless. It's just coincidence it happened right after the ENG.

I claim the probability for event B is close to zero, but probably not zero, which would give the probability of event A is close to 1 (but not 1 exactly).

But certainly P(B) -> 1 instead...that makes more sense.

Or psychosomatic...you know...this almighty thing...it can explain everything, it is almighty!

Maybe I cannot think? Somewhere must be an error...

Who needs logical thinking, or thinking at all, when there's all that psycho stuff relieving you from the burden of thinking?

 

[Inara]

Neuropathic pain has many causes. Not all of them obvious

I think something is the matter with the nerves (well, surprise surprise with ME), at least in this leg. And the ENG was this "last drop". I also believe that this neuropathic pain would have come some day, but maybe not before 5 or 10 years.

they're not trying to treat it with CBT

My cool GP isn't. His opinion was, "psychosomatic" makes no sense (because I didn't have problems with that before - I can't have everything ). He's the only doctor right now who's willing to help. Crazy world!

I'm sorry if I've mentioned this before, but I'm sympathising with your pain while you wait for your doctors to catch up.

Thank you so much @adambeyoncelowe

Can I ask why amitriptyline was contraindicated?

I have MCAS. (Opioids are contraindicated, too, btw.) I also have a certain genetic make-up that leads to a worse ability of the body to handle certain substances, e.g. antidepressants. Anti-epileptics weren't included in both cases, so I was willing to give that a try.

Edit: Ah, the magnesium! I am taking magnesium (every 1-1.5h ca. 200mg different compositions, citrate, carbonate, glycinate, threonate) due to a deficiency. Would the malate make a difference do you think?

 

[Invisible Woman]

Was searching for something else and came across this downloadable leaflet from the MEA @Inara, don't known if it adds any other information that might help you. I think it's £0.83 to download:

http://www.meassociation.org.uk/shop/medical-management-leaflets/lyricapregabalin-for-pain-relief/

 

[Inara]

Thank you @adambeyoncelowe and @Invisible Woman!

Malic acid - this has nothing got to do with "apple acid" (vinegar stuff)?

 

[Skycloud]

Malic acid - this has nothing got to do with "apple acid" (vinegar stuff)?

Yes, it does, but I don't know the %content in apple cider vinegar. It's also in other fruits than apples and tastes sour.

 

[NelliePledge]

Hi @Inara i am sorry you’re having this crap from the medics I hope you can find someone who will help you with this pain

I started taking pregabalin 3 years ago I started off on what the Dr said was his normal starting dose 75mg morning and evening. This turned me into a zombie for 3 or 4 weeks. I spoke to dr and was told to reduce to 75mg at night. I was still like a zombie. I returned to the dr and asked what is the lowest available dose which was 25mg tablet. So my prescription was changed to 25mg morning and evening. Which was better but as I was later also prescribed amitryptiline at night for sleep I decided to only take pregabalin when the neuropathic pain is too much. I hate the zombie effect both pregabalin and amitryptiline or more recently nortryptyline have on me I seem very sensitive to this but I don’t think I’m alone in this experience

Going back to when I had been taking a higher dose of pregabalin just after I reduced the dose I was starting to feel less zombified and met friends for lunch in a cafe in my city centre I had a bad fall coming down two steps and sprained my right ankle and my left foot at the same time both were swollen and bruised and it took me two months to be able to walk properly. I can’t prove it but I’m convinced that the effect of pregabalin was a factor in my fall. I wasn’t diagnosed with CFS at that time I think I was being treated by the dr who prescribed pregabalin as Medically Unexplained Symptoms- he laughed at me when I asked if I might have Fibromyalgia and said you don’t get a sore throat with that.

Sorry for rambling on I know some people find pregabalin helpful but I just wanted to highlight there can be issues.

 

[Inara]

Hi @NelliePledge, so you are not so positive about Pregablin, too. Thank you so much for sharing your experience!

150mg for neuropathic pain is pretty high, isn't it? My GP told me it's unisono that 25-50mg are used, but there are certainly country differences.

I think it is a good "compromise" to use Pregabalin only when the pain is too much, and in other cases I'll try the alternatives mentioned here.

he laughed at me when I asked if I might have Fibromyalgia

Woah, I really could hate some doctors...

 

[NelliePledge]

Hi @NelliePledge, so you are not so positive about Pregablin, too. Thank you so much for sharing your experience!

150mg for neuropathic pain is pretty high, isn't it? My GP told me it's unisono that 25-50mg are used, but there are certainly country differences.

I think it is a good "compromise" to use Pregabalin only when the pain is too much, and in other cases I'll try the alternatives mentioned here.


Woah, I really could hate some doctors...

Yes he is at the top of my hate list.

It is weird the different approaches to medication in different countries. I’ve heard of people on higher than 150mg pregabalin a day but it seems to me like the low dose approach your GP talked about was more sensible.

I hope you manage to get the pain under control

 

[Inara]

I’ve heard of people on higher than 150mg pregabalin a day

In case of epilepsy the dosage is somewhere around 150-300mg I was told.

With Pregabalin, the pain is ok. But I reduced to 12,5mg. I will make a brake tomorrow and then I'll see if the pain is gone or at least tolerable.

Yes he is at the top of my hate list.

A very clear statement.

 

[Wits_End]

The BBC is reporting that pregabalin is being reclassified as a Class C drug - I'm not too sure what implication that has for people on here:
https://www.bbc.co.uk/news/uk-northern-ireland-47766520

 

[Inara]

What means class C exactly?

That doesn't sound too good. And what would be the alternatives?

 

[Arnie Pye]

What means class C exactly?

That doesn't sound too good. And what would be the alternatives?

You might find the two links in this post help to answer your question :

https://www.s4me.info/threads/unint...t-legislation-not-important.8904/#post-157171

Certain drugs, usually those which are addictive, have rules attached about who can prescribe, how they are prescribed, how much can be prescribed, and when they can be prescribed. Class A are considered the most dangerous e.g. morphine, Classes B and C are less dangerous.

 

[Sly Saint]

Exclusive: Prescriptions rising for anxiety drug linked to 1 in 10 drug deaths in England

Pregabalin is a prescription drug used to treat epilepsy, chronic pain and anxiety.

It’s regarded by the authorities as an effective treatment, but it can also cause dependency, addiction, and puts people at higher risk of overdosing on other substances – the reasons why it became more tightly regulated in 2019.

Yet figures obtained by Channel 4 News show that, since then, the number of patients being prescribed Pregabalin has risen significantly in England, and so too has the number of fatalities it’s linked to.

https://www.channel4.com/news/exclu...drug-linked-to-1-in-10-drug-deaths-in-england