Tricyclic Antidepressants Work for Me

[RuralRick]

I have had CFS for 40 years. Or something similar to CFS. I awoke with it one morning and it stayed with me for 4 years. I saw a lot of doctors who were unable to diagnose or treat me, had a lot of tests which were all normal. I gave up trying for a long time. Then one day I decided to try out seeing a psychiatrist. He diagnosed me with depression, of course, and because it was 36 years ago 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. Since then I have been on and off TCA's my whole life, depending on whether the symptoms recur or not. They have always worked for me and because of that I've been able to have a normal life all of these years. So I want to share with you how I use them in case its of any help. By the way, I'm not depressed and have never suffered from depression.

So, TCA's are antidepressants that were used in the old days but have fallen out of favor because the newer drugs has less bothersome side effects. They are still used occasionally for depression but more often for chronic headaches, irritable bowel syndrome, diabetic neuropathy, and chronic pain at lower doses. The side effects come from their anticholinergic actions: dry mouth, difficulty urinating, constipation, lightheadedness when getting up from a chair, blurred vision, reduced libido. The side effects are not insignificant and can be a barrier to using these drugs, however, a slow stepwise approach in dosing them can reduce those issues.

TCA's have the following known actions: Serotonin Reuptake Inhibitor, Norepinephrine Reuptake Inhibitor, Acetylcholine Inhibitor, Antihistamine. They work by increasing the amount of Serotonin and Norepinephrine (neurotransmitters) in the brain at the nerve endings.
They come as 10mg, 25mg, 50mg, 100mg. The dosage range is from 10 - 300mg. The dose for depression is 150 - 300mg. The dose for IBS is low.....10 - 25mg a day. Their names include Amitriptyline, Nortriptyline, Imipramine, and Desipramine.

The most common mistake in treating with TCA's is starting with too low of a dose. I find that I need 125 - 150mg per day initially to get into remission. To start on the medication, take 100 - 150mg a day and keep it up day after day. Don't stop. You will want to stop because your mouth will get very dry and you will get lightheaded when you stand up and you will be constipated.....initially. But you have to just deal with the side effects and keep taking it if you want to see if it will work. It will take from 3 - 10 days to have an effect. If its doesn't, I push the dose higher.

When it works, I suddenly feel all of the symptoms just sort of melt away. Its a complete remission. Then I'm only left with the side effects, and they get better the longer I'm on it. After a week or so, I can start to lower the dose and figure out what the maintenance dose is for me...usually 25 - 75mg a day.
I don't know if I have the same syndrome that other people here have, but it works for me. It may not work for you. And you may have different side effects than I have. Or you may have other diagnoses or medications that preclude you from taking these drugs.

My symptoms are: Feeling very fatigued, brain fog (difficulty making decisions, unable to multi-task, emotional fragility), nausea, dyspepsia, weird tingling in my scalp (paresthesia's), and a complete loss of any sense of well being. My symptoms affect every waking moment of my life when they are present and totally ruin my life. The first 4 years, I had no treatment at all and it was a horrible time. I still get symptoms a few times a year when I drop the dose too low, as I did a month ago and paid for it.

So, that's what works for me, for what its worth. I have tried SSRI's and SNRI's and they did not work for me, at any dose.

 

[knackers323]

Do you get any depression symptoms when you try to come off or lower the dose of these meds?

There are a fair few stories similar to yours of people getting good results from antidepressants even though they do not feel depressed.
I myself had a similar effect but it only happened with one antidepressant, Aropax.
I've tried about 20 others and the effect is non existent or not as strong.
I've read antidepressants have antiinflammatory effects and even effects against infections like entero viruses so the mechanism of why it's helping could be many.

There was a theory around a few years ago that CFS was caused by something to do with neurotransmitters with one company identifying two drugs that they felt helped but I never heard any more about it.

For me at least it didn't seem to be so much I ts effects on the feeling of depression but more so what the Aropax was doing physically.

I would be able to tell within a few hours to half a day ( I don't remember exactly now) if I missed a dose. My mental state would be the same but my CFS symptoms would start coming back

 

[RuralRick]

My trigger was a long, sleepless night after an incident that made me anxious. When the morning arrived, so did my symptoms.

I never get depression symptoms when I come off or lower the dose. If I do it too soon, then my original symptoms return. I kind of walk a fine line between having no symptoms and having side effects.

 

[knackers323]

My trigger was a long, sleepless night after an incident that made me anxious. When the morning arrived, so did my symptoms.

I never get depression symptoms when I come off or lower the dose. If I do it too soon, then my original symptoms return. I kind of walk a fine line between having no symptoms and having side effects.

Yes me also. The side effects are a real problem.
I don't suppose you have heard any theory as to why the meds help your symptoms?

Is their any evidence of neurotransmitter problems in your family? Depression, anxiety etc.

 

[Wolfcub]

This is interesting. They obviously alter brain chemistry, even if not used for a psychological problem.
I have wondered about the impact of acetylcholine myself. I have found though (opposite to what has helped you) -that things which release acetylcholine have helped me.
I am not clinically depressed either, but there have been times when I have felt so saddened by what is happening to my life I knew so well before!
I felt so ill. Then I cried. I mean -cried right from my boots! I felt remarkably better for three days following!
That happened three times. I researched it and found out crying releases acetylcholine. Very interesting.

And then of course, there is serotonin, and its sister, melatonin. The gut (the "second brain") has a powerful role in the production of serotonin.
Melatonin and me appear to get along okay. But that isn't the case for everyone with CFS.

So the case for antidepressants working for some is intriguing. I don't think I will ask for them though as I get along very badly indeed with drugs usually. They make me very ill.

There are herbal alternatives which I might explore.

 

[RuralRick]

There are herbal alternatives which I might explore.

Yes.....St. John's Wart.

 

[knackers323]

@Wolfcub what have you used that releases acetylcholine?

 

[Hip]

The most common mistake in treating with TCA's is starting with too low of a dose. I find that I need 125 - 150mg per day initially to get into remission.
...

It will take from 3 - 10 days to have an effect. If its doesn't, I push the dose higher.
...

After a week or so, I can start to lower the dose and figure out what the maintenance dose is for me...usually 25 - 75mg a day.

Interesting that TCAs have put your ME/CFS into remission. Any idea why it requires a higher starting dose to induce remission, after which you say you can reduce the dose?

And does this mean that if you start on the lower dose, that will not induce remission at all? Or might a lower dose eventually work, but it just takes longer for remission to appear?

 

[heapsreal]

I used doxepin for sleep in my early days of cfs which it worked well but over time its sleep effects stopped working. Ive tried other tca's but no effect on sleep. I found i put weight on easy and couldnt satisfy my hunger for vegimite on toast.

Doxepine i didnt find any effect on mood but amitriptyline definitely improved mood, although i was using it to maybe help sleep but mostly for pain which was minimal. Side effects of increased appetite were too much for me but if this could be negated and i need a mood boost, it was pretty good. Purely on lifting mood it was better than any of the ssri's etc.

Ive never really taken antidepressants for mood, it was either to improve sleep with the TCA or energy with the ssri or nri.

 

[Dolphin]

I get 8.5-10 hours sleep on 25 mg of Surmontil (trimipramine). That helps recovery from the previous day quite a lot.

Even though amitriptyline is supposed to be more sedating, I got an hour or less sleep on it.

Having put a lot of weight on weight on Surmontil and then amitriptyline, I have now got my BMI down to 22.1. I am still severely affected, but am grateful for the sleep.

These are both tricyclic antidepressants. I tried an SSRI briefly and only got 4 hours of sleep a night on it.

 

[jaybee00]

@RuralRick

Which TCA works best for you?

Thanks.

 

[RuralRick]

@Wolfcub what have you used that releases acetylcholine?

I wonder this also. Its interesting that blocking acetylcholine may be helping me but the opposite helps you.

Interesting that TCAs have put your ME/CFS into remission. Any idea why it requires a higher starting dose to induce remission, after which you say you can reduce the dose?

And does this mean that if you start on the lower dose, that will not induce remission at all? Or might a lower dose eventually work, but it just takes longer for remission to appear?

I'm not sure why I need higher loading doses. The rule is that it takes 5 half lives to reach a steady state of the drug level. So if the half life (the time it takes to clear out half of the drug from your body) is 24 hours, then it takes 5 x 24 = 5 days to reach a steady state. That might explain the need for a loading dose but when I drop the dose, the steady state drops also which doesn't make sense. There must be something else happening, like I am replacing some neurotransmitter stores that I've depleted. I've always imagined that my triggers (stress, illness) use up these stores and that's why I have an exacerbation. Its only a theory though.

I used doxepin for sleep in my early days of cfs which it worked well but over time its sleep effects stopped working. Ive tried other tca's but no effect on sleep. I found i put weight on easy and couldnt satisfy my hunger for vegimite on toast.

Doxepin was the first TCA I tried and it did not work for me. TCA's do improve my sleep somewhat but they are not a cure all. My appetite is increased on the higher doses but not the lower ones.

I get 8.5-10 hours sleep on 25 mg of Surmontil. That helps recovery from the previous day quite a lot.

Surmontil is Trimipramine which I've never used.

@RuralRick

Which TCA works best for you?

Thanks.

Imipramine and Desipramine. Desipramine has the least side effects so I use that as long as I can get it at a decent price. These drugs used to be dirt cheap ($2 for a months supply) but recently they have gone up in price.

 

[RuralRick]

Yes me also. The side effects are a real problem.
I don't suppose you have heard any theory as to why the meds help your symptoms?

Is their any evidence of neurotransmitter problems in your family? Depression, anxiety etc.

I've never heard a theory as to why it works but I've never talked to a researcher either. We do have some anxiety and depression in the family. Just run of the mill type though, not disabling. They may be on meds....I don't know.

 

[Hip]

I'm not sure why I need higher loading doses.

With the nootropic drug/supplement piracetam (which actually works quite well to combat brain fog), some literature suggests that when you begin taking piracetam, you should start with an "attack dose" which is quite a bit higher than the regular maintenance dose. I don't know if there is any truth to it, but I have seen claims that piracetam may not work unless your prime your brain with this attack dose.

So possibly there might be something like this going on in your experience with TCAs (though outside of piracetam, I've never come across any other drugs that require an attack dose).

 

[RuralRick]

…..
So possibly there might be something like this going on in your experience with TCAs (though outside of piracetam, I've never come across any other drugs that require an attack dose).

There actually are some others that I've heard of. Often its just to get the drug level high as quickly as possible rather than to replace lost stores of whatever. Thanks for your example.

 

[taniaaust1]

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.

TCA's have the following known actions: Serotonin Reuptake Inhibitor, Norepinephrine Reuptake Inhibitor, Acetylcholine Inhibitor, Antihistamine. They work by increasing the amount of Serotonin and Norepinephrine (neurotransmitters) in the brain at the nerve endings.
They come as 10mg, 25mg, 50mg, 100mg. The dosage range is from 10 - 300mg. The dose for depression is 150 - 300mg. The dose for IBS is low.....10 - 25mg a day. Their names include Amitriptyline, Nortriptyline, Imipramine, and Desipramine.

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.

 

[Dolphin]

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.

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.

 

[RuralRick]

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.

I fit the Canadian Consensus Criteria best, although there are some problems with the PEM. It depends on how you define exertion. The exertion that triggers my symptoms is usually extreme emotional stress or physical illness. I'm not triggered by exercise. All of the other criteria I meet well.

A problem with the criteria is that the symptoms are so broad and vague and subjective. Meeting the criteria still doesn't reassure me that you and I are experiencing the same thing or that we have same root cause for our symptoms.

Thanks for your warning about Amitriptyline. It does have anticholinergic side effects which include impairing bowel motility and bladder contraction. I have those side effects but they are not as severe as your were.

 

[cb2]

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

 

[taniaaust1]

I fit the Canadian Consensus Criteria best, although there are some problems with the PEM. It depends on how you define exertion. The exertion that triggers my symptoms is usually extreme emotional stress or physical illness. I'm not triggered by exercise.

I think its the PEM which really "helps" define different things, the different groups. I personally see a person without PEM to exercise probably as not having the same illness as I (even if they do through the same names at things). I do thou think it is quite possible for someone not to have noticable PEM to exercise in the beginning of their illness (my PEM wasnt noticable right at the beginning) and for it to come in later and at which time it becomes clearer where they fit with things.

There is not many illnesses at all which get the delayed PEM symptom to exercise. You are right, a person can still meet the CC CFS criteria who doesnt get triggered by exercise.

thanks.

A problem with the criteria is that the symptoms are so broad and vague and subjective. Meeting the criteria still doesn't reassure me that you and I are experiencing the same thing or that we have same root cause for our symptoms.

Yes.

Thanks for your warning about Amitriptyline. It does have anticholinergic side effects which include impairing bowel motility and bladder contraction. I have those side effects but they are not as severe as your were.

be careful esp if already showing side effects in this area...