Pregabalin, Ativan and Abilify

[leokitten]

@Martin aka paused||M.E. @hmnr asg @jaybee00 @GlassCannonLife @Hip

If drugs like high dose gabapentin and pregabalin help for tamping down ME overstimulation and brain pain etc, what do you think about stronger anticonvulsants like lamotrigine and topiramate?

I’ve wondered if lower doses of these anticonvulsants could help with ME overstimulation and related symptoms

 

[Hip]

If drugs like high dose gabapentin and pregabalin help for tamping down ME overstimulation and brain pain etc, what do you think about stronger anticonvulsants like lamotrigine and topiramate?

I tried lamotrigine in doses of 12.5 mg daily for a few weeks. It had a several good effects, but I found that in spite of producing a better mood, it was also paradoxically increasing suicidal ideation (as anticonvulsants are known to do), so I stopped taking it.

Here are my lamotrigine test notes from the time:

Thursday 18 December 2014

Effects of Lamictal (lamotrigine) 12.5 mg:

I noticed that my desire and ability for doing medical ME/CFS research, and my desire and ability to lateral think about these medical subjects was quite diminished, and instead I wanted to do more simple and physical organizational tasks around the house, like moving furniture, organizing my desk, or house cleaning.

I feel a mild increase in energy levels, less fatigue, and perhaps less brain fog.

Lamictal seems to have a good antidepressant effect, although it did not improve my anhedonia, but has improved my emotional flatness. Sociability seems much improved. Libido also increased a little.

A negative effect of this drug is an increase in sound sensitivity.

I seem to need an hour or so less sleep, I wake up much less groggy, and in a happier mood in the morning. Dreams during the night are more vivid (perhaps this means I get more REM sleep)?


Saturday 20 December 2014

There definitely seems to be a noticeable increase in the spontaneous desire to chat and socialize with people in the house, in place of my normal desire for social withdrawal and solitude.

And the constant ME/CFS irritability and annoyance I get towards people has been largely replaced by tolerance, and even affection.

The increased sound sensitivity problems initially induced by Lamictal have now disappeared today.


Monday 22 December 2014

Lamictal (lamotrigine) 12.5 mg does seems to be increasing suicidal ideation a little bit. This is a known side effect of this drugs, especially in people that have had such suicidal thoughts before.

 

[jaybee00]

like lamotrigine and topiramate

I tried topiramate and it didn’t work—also didn’t work as an appetite suppressant. There have been 2 reports of people improving on phenytoin (Dilantin). I’m currently trialing phenytoin, only one week in. I’m taking 100 mg three times a day. I’ll try to update.

 

[leokitten]

I tried topiramate and it didn’t work—also didn’t work as an appetite suppressant. There have been 2 reports of people improving on phenytoin (Dilantin). I’m currently trialing phenytoin, only one week in. I’m taking 100 mg three times a day. I’ll try to update.

Thank you keep us updated, I’m willing to try almost anything if abilify doesn’t work again. Trying to plan ahead, that’s why been wondering about anticonvulsants lamotrigine etc since maybe could help with ME overstimulation, light sound sensitivity, etc, which might be a contributing factor in my sleep disturbances and severe gut issues I’ve been having at night if it’s not due to MCAS (which it really might be, the symptoms line up… I’ve been taking antihistamines, montelukast, and occasional cromolyn and it appears to help some but not enough)

 

[GlassCannonLife]

Thank you keep us updated, I’m willing to try almost anything if abilify doesn’t work again. Trying to plan ahead, that’s why been wondering about anticonvulsants lamotrigine etc since maybe could help with ME overstimulation, light sound sensitivity, etc, which might be a contributing factor in my sleep disturbances and severe gut issues I’ve been having at night if it’s not due to MCAS (which it really might be, the symptoms line up… I’ve been taking antihistamines, montelukast, and occasional cromolyn and it appears to help some but not enough)

Are you on the discord? A member reported he went to remission or thereabouts on Parnate (tranylcypromine). Seems interesting

 

[Zahr82]

I tried lamotrigine in doses of 12.5 mg daily for a few weeks. It had a several good effects, but I found that in spite of producing a better mood, it was also paradoxically increasing suicidal ideation (as anticonvulsants are known to do), so I stopped taking it.

Here are my lamotrigine test notes from the time:

I'm on 400mg of lamotrigine. Long covid. It helps with mode and depersonalzation quite a bit. Don't know about physical symptoms

 

[Zahr82]

I'm on 400mg of lamotrigine. Long covid. It helps with mode and depersonalzation quite a bit. Don't know about physical symptoms

12.5mg won't be enough to help anythings i doubt

 

[lenora]

@hmnr asg.....I sure hope I'm not doing anything wrong! It's not intended that way.

Pregabalin: I've been on the same dose (fairly low) for at least 8 yrs. now. I'm fine and will continue with it. I was around when we had nothing for pain....and then wonder of wonders! gabapentin came along. It helped many people, but it left me completely out of my mind for 3 mos. Still, it finally kicked in and the pain levels decreased significantly. Pregabalin is from the same family....and I easily lowered my dose of gabapentin and went on pregabalin. For me, there weren't as many side-effects. In the beginning there were no real guidelines in the way of doses, etc., it was a matter of trial for both the Dr. and patient. Some very small women were on extremely high doses and actually returned to work.

In the end, it all depends on the patient and how the body responds....it takes time and effort to figure this out.

Bromocriptine: I suffered from a pituitary tumor and it was treated with bromocriptine for many years. Problems disappeared and I had no problems with reducing dosage and then finally stopped. Again, a fairly low dose. In my case, it had no effect on pain levels. Yours, Lenora

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. @hmnr asg @jaybee00 @GlassCannonLife @Hip

If drugs like high dose gabapentin and pregabalin help for tamping down ME overstimulation and brain pain etc, what do you think about stronger anticonvulsants like lamotrigine and topiramate?

I’ve wondered if lower doses of these anticonvulsants could help with ME overstimulation and related symptoms

Topiramate did nothing for me.
It gives me energy. And I think the rest (stopping overstimulation etc.) is just a consequence.
I think that is how it works:

 

[leokitten]

Topiramate did nothing for me.
It gives me energy. And I think the rest (stopping overstimulation etc.) is just a consequence.
I think that is how it works:
View attachment 47881

Thank you for the info. Did you refer to lamotrigine in you second sentence?

 

[Martin aka paused||M.E.]

Thank you for the info. Did you refer to lamotrigine in you second sentence?

No. Pregabalin