Tricyclic Antidepressants Work for Me

[taniaaust1]

Sorry to hear this happened you. May I ask whether you had constipation/IBS-constipation before taking the drug? In my case, it slowed things down but that suited me as my bowel had become overactive. I developed this a few years into the illness when my illness was getting worse (I was undiagnosed).

This type of drug has improved my quality of life and I satisfy ICC, CCC, etc.

Yes I probably did have some IBS-C before taking this drug but my bowel still functioned fine and responded to normal things eg I could take some metamusil or extra fibre if I had a bout of consitpation and it would work. After this drug laxatives didnt work on my bowel, at one point I ended up taking 3 different ones at once 2-3 times their maximum doses in desperation with no effects on my bowel).

It wasnt that this drug just gave me constipation but it destroyed my bowel peristalsis and my bowels ability to response to nearly everything. eg it then also didnt respond to glycerine and olive oil laxitives etc etc. There was NOTHING at the chemist except one kind of enema I could get a bowel response too even when overdosing on the things. I ended up in real trouble with this and the GPs didnt know how to help me and I'd tried everything they could think of and suggest. (by this point I was manually removing faeces from me daily with my fingers etc as it was impossible to go)

A further complication of that drug after it ruined my peristalsis, was that I ended up developing a bowel prolapse due to the severe constipation issue it caused. I almost had to have SURGERY as an after affect of this drug, all from a less then 2 week trial of it.

Id be wary if anyone is also thinking of using this drug to help IBS-D as what happens then when if the cause of the diarrhea is found and fixed and you go to stop this drug and only then find out its affects say there with you and you now have an issue which cant be fixed.j

this drugs affects on our bowels and bladder can be unpredictable and once there it may be too late. I know of no other drug which has caused such severe issues for some ME/CFS patients.

 

[RuralRick]

how did you get the dr to go along with this? how does one determine if it's the right TCA or if need to increase dose, as you mentioned the first one did not work for you? I have some amitriptyline i could experiment with.
thanks

After the initial diagnosis and treatment by the psychiatrist many years ago, there has been no issue continuing to get the drug. I usually tell new doctors what I am dealing with and that this has always worked for me. Its not a controlled drug and as I've said, its used for other chronic issues such as Fibromyalgia, Chronic Headaches (migraine and tension), Diabetic Nerve Pain, Insomnia, etc so they are familiar with using it. They have nothing to offer me if I say I have CFS other than what is already working for me, so they agree to continue it. After awhile they get used to me dosing it up and down, as long as I don't go over a certain amount.

As for choosing a TCA, its all trial and error as it is with any antidepressant. One might be wise to first take a very low dose to make sure there are no terrible side effects. As for dosing it, the range is 10mg to 300mg. I have no experience with anyone else having my symptoms and taking it. I would guess a good experiment is to try to get up to at least 75mg a day and higher if you can tolerate it. And then you just keep taking it for about 10 - 14 days wafting for an effect. You would be wise to run this by your Dr. They might be willing to support you in trying a TCA and they can watch for drug interactions and help you with side effects.

I have used Amitriptyline in the past but found it to be too sedating. And taniaaust1 has had a bad experience with it. Its not the best one to choose for high doses in my opinion.

 

[Hip]

he started me on a Tricyclic Antidepressant (TCA). The first one did not work but about a week into the second one and....all of my symptoms went away. And they stayed gone as long as I took the medication.

This is a question I often ask when recovery or improvement stories are posted: before your TCA treatment, where were you on the ME/CFS scale of very severe, severe, moderate, mild, remission? Obviously after treatment you moved up to the remission point on this scale, but what was the severity of your ME/CFS before treatment?

 

[RuralRick]

This is a question I often ask when recovery or improvement stories are posted: before your TCA treatment, where were you on the ME/CFS scale of very severe, severe, moderate, mild, remission? Obviously after treatment you moved up to the remission point on this scale, but what was the severity of your ME/CFS before treatment?

Thanks for including the link to the scale in your post. Based on that, I would have been Mild. I continued to go to school but tried to get out of as many social engagements as I could. Even in the Mild Category I felt as if I were only going through the motions of life, carrying this ball and chain around my foot. The difference between Mild symptoms and Remission is enormous in my experience. I can't imagine what it must be like to have Very Severe symptoms.

 

[Hip]

The difference between Mild symptoms and Remission is enormous in my experience. I can't imagine what it must be like to have Very Severe symptoms.

I think every level on that scale has its own challenges, because you are always up against a barrier of limitations, just different barriers at each level.

 

[frozenborderline]

Isn't there a decent amount of research on serotonin and CFS? Not that this would validate the central fatigue idea or a BPS model, since serotonin has roles in the body, far beyond just centrally active.

Also many TCAs are also antihistamines, right?

 

[RuralRick]

Yes, TCA's are antihistamines also. As far as Serotonin and CFS, there seems to be a lot of research but no conclusions.

 

[Snow Leopard]

I don't respond well to TCAs but it's interesting that some people do.

Desipramine is a somewhat specific norepinephrine reuptake inhibitor, which suggests that the people who respond to this drug have an issue with the adrenergic system.

 

[David_101]

Hi RuralRick. Im curious if you fit the Canadian Consensus critera for ME/CFS or the International ME one when you were sick? I cant tell from how you described your illness.



A big warning to those who fit the CC criteria or the international criteria. Amitripyline for some of us can cause permanent damage as experienced by several of us who used this forum over the years.

It can leave bowel paraylses or urinary paralyses in us. For myself just less then a couple of weeks trial of it at a "low dose" caused my bowel to completely stop working so I could no longer go. I then was having to have daily strong enemas and had to see a bowel specialist as even all the laxatives and things I was trying wouldnt even work.

It took a year or more (I cant remember now how long but it was a very long time) for my bowel to recover from the affects of what the Amitripyline did to my body (I ended up finding out the only thing I could take by mouth which would work on my bowel was food grade Epsom salts and at that point was able to stop the daily enemas I'd been having to do since the Amitripyline trial).

Others here for years later after taking this drug (and I suppose still do) had paralysed bladder from this drug.

It didnt help any of my symptoms and just gave me long term major issue!!. I highly recommended anyone with CC defined ME/CFS or Internationally defined ME to avoid even trialing Amitripyline.

@taniaaust1 incidentally I was in the ED a month back and a lady there complained about Amitripyline causing her to not be able to defecate.

I have the opposite problem. I had increased urgency without cramps. Feels like stool passes to fast through my body and would come out loose. The more I went the more I felt the urgency as nothing is blocking the stool from being processed.

My stool quality has been improved but I still have a watery trail towards the end. If I go too much then I reach the liquid part of my stool and it burns my rectum causing an urge.

I also feel like my sphincter is open 24/7 and is pushing downward when I lay or sit down.

A doctor prescribed me Nortriptyline 10 mg. Only took it for 3 days so far. Would this cause issues you described?

 

[taniaaust1]

@taniaaust1

A doctor prescribed me Nortriptyline 10 mg. Only took it for 3 days so far. Would this cause issues you described?

I have not heard of anyone with ME/CFS mentioning permanent issues with "Nortriptyline" so I do not know anything about that drug.

Best luck at finding something which helps.

 

[MrMuffin]

I tried one microdose of amitriptyline at around 9 PM, woke up at 3 AM, stood up, passed out.. had weird heartbeat and anxiety for a few weeks after. Has anyone had a similar experience?