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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by bleauberry on July 26, 2009, at 5:21:03
Started Nortriptyline 5mg mid June for pain and depression.
Pain relief immediate and 90% improvement. Dysphoric first week, but not more depressed, then one week of hints of sporadic improvement, then got more blah and down.
Increased to 7.5mg. More depressed, more nervousness.
Increased to 10mg, depressed to the point of crying bouts now. The adrenaline rush that used to hit me at 3am is now back full force, with a crazy waking insanity nervousness thing. Think about hospital or suicide a lot.
Side effects:
Much increased depression.
Constant worry, anxiety, nervousness.
No appetite. Weight dropped from 132 to 123.
Slow thinking, slow walking, slow sloppy guitar.
Wanting to die.
Crying. Deep dark sadness for no reason.Benefits:
Best pain reliever on the planet.
Relaxed bladder.Excellent med for pain or bladder problems.
I was in bad shape before I started, and am now a shell of who I was. The road back looks like a hundred miles away.
I am terrified of the withdrawals. I can feel an opioid mechanism in Nortriptyline, which I believe is what provides a significant role in the pain relief and the bladder relaxation.
This is going to be nasty. Will probably try 2.5mg and feel it out from there.
Not cool. Hanging on by threads.
Posted by SLS on July 26, 2009, at 6:09:28
In reply to Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 5:21:03
> Not cool. Hanging on by threads.
Is there any possibility that using such a low dosage of nortriptyline is producing paradoxical effects such that they would be reversed upon reaching standard therapeutic dosages?
I imagine you will be too scared to try raising the dosage at this point, and I would hate to recommend something that is going to make you feel worse. Which other drugs have produced this same syndrome?
- Scott
Posted by Phillipa on July 26, 2009, at 11:04:00
In reply to Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 5:21:03
Blueberry I'm so sorry. Have you contacted the doc? Not to be unsupporttive could it have anything to do with the antibiotics know to cause depression just a thought. This is very distressing to hear. Love Jan
Posted by Sigismund on July 26, 2009, at 14:43:18
In reply to Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 5:21:03
Geez, BB, you've been so much help to so many people I wish there was something helpful I could say to you.
You certainly seem to have a very touchy system.
You might be right about the pain relief thing but what about the bladder?
I don't know anything about that either.
Posted by linkadge on July 26, 2009, at 15:46:31
In reply to Re: Nortriptyline Bust » bleauberry, posted by Sigismund on July 26, 2009, at 14:43:18
Hmm. Hard to say. You could try increasing as SLS suggests. Perhaps low doses have all the side effects but no theraputic effect. Alternatively you could keep the dose low and see if it mixes with say escitalopram.
Linkadge
Posted by Zana on July 26, 2009, at 16:02:22
In reply to Re: Nortriptyline Bust, posted by linkadge on July 26, 2009, at 15:46:31
So sorry to hear you are in so much pain. Everyone else may know this already but what medications have you tried in the past? It sounds like the depression is the primary symptom right now. Is that right? Has anything helped in the past?
You are so much help to others and such an important voice on Babble. I hope we can help you now.
I'll be thinking of you and watching for your posts. Please keep us up on what is going on with you.
Any idea what precipitated these symptoms?
Zana
Posted by linkadge on July 26, 2009, at 16:19:30
In reply to Re: Nortriptyline Bust, posted by Zana on July 26, 2009, at 16:02:22
I am personally learning towards the notion that the TCA's are just generally not all that safe.
WTF is it so hard to ask for a drug that works and won't leave you a zombie or give you a heart attack.
Linkadge
Posted by SLS on July 26, 2009, at 17:15:00
In reply to Re: Nortriptyline Bust, posted by linkadge on July 26, 2009, at 16:19:30
> I am personally learning towards the notion that the TCA's are just generally not all that safe.
What are your concerns?
- Scott
Posted by Sigismund on July 26, 2009, at 17:46:59
In reply to Re: Nortriptyline Bust, posted by linkadge on July 26, 2009, at 16:19:30
>WTF is it so hard to ask for a drug that works and won't leave you a zombie or give you a heart attack.
Of course. All the obvious plants got refined into drugs of abuse the control industry has to deal with, leaving pharmaceutical companies to develop the toxic ones. Just civilization.
Posted by bleauberry on July 26, 2009, at 18:04:57
In reply to Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 5:21:03
Well, still alive. Thought I would answer a few questions while I still am.
Other meds that worsened depression tremendously starting with the worst ones at the top of the list working down to the least worse, but all deserving of hospital time or suicide compared to baseline:
Wellbutrin
Adderall
Cymbalta
Lexapro
Lamictal
Nortriptyline
5HTP
Zoloft
Paxil
Zyprexa
Seroquel
Trazadone
Klonopin
Abilify
Amisulpride
Memantine
Depakote
St Johns Wort
Xanax
Serzone
SAMePositive:
Ritalin. Drawback: Leads to rage and paranoia within a few days.Doxycycline+Ultra low dose Hydrocortisone (one day miracle of total remission)
Ocassional DMSA heavy metal chelation (usually 3 out of 6 days are remarkable improvements followed by quick deterioration)
Neutral:
Deprenyl. Drawback: Leads to irritible rage, sexual dysfunction, and hellish body odor of strong ammonia.
Parnate. Tiny dose. Drawback: Extremely sore tight calf muscles, hurt bad even sitting, hard to walk, no appetite. Something scary neurological going on here.Remeron: Highest dose was 15mg years ago as add-on to Prozac when it used to be tolerable. Was a good sleep aid. Don't know what it would do on its own.
Milnacipran. Good start, but the side effects were way too intense to get to a therapeutic dose.Not tried:
Buspar
Effexor (No, trust my instincts, won't do it)
Lithium
Risperdal (Very distant maybe, but really a no)
Ziprasidone (No, trust my instincts, won't do it)
NardilMaybe I'm one of those people that would do well with Ritalin and something else soft to balance it(but NOT an antipsychotic, aint going to that town ever again)
Things on the watch list:
1. Remeron solo. I generally do not view highly of this drug, but it never hurt me bad except withdrawals were hard and prolonged.
2. Remeron + ??? (Milnacipran maybe???) (and Ritalin???) HHmmm. That has possibilities.
3. Buspar solo (saw at askapatient.com it worked for someone's sensitive treatment resistant depression by surprise. I like its receptor targets, despite the drug's poor reputation)
4. A supplement called Deproloft. It has many of the natural ingredients I have tried, but all in very small amounts and all synergistic, versus the solo trials I have done.
5. I guess Nardil is a distant maybe, but at this moment the hard pharmaceuticals have me terrified.To me it looks pretty obvious. The symptoms are caused by Borellia, the infectious organism called Lyme disease. How exactly, don't know. I just keep thinking there has to be a way to hit the right receptors or the right neurotransmitter to bridge the roadblock.
Somehow sulfur is also tied into it, as anything with sulfur gives the rock-hard tight extremely painful calf neurologic crippling (DMSA, Parnate, SAMe, all antipsychotics). Somehow anything with fairly strong noradrenergic action produces that aweful unique odd pungent very nose-biting body odor (ammonia), with the lone exception of Milnacipran.
Heavy metals were confirmed 2 years ago on provoked urine lab tests. Lyme is all but sure, with symptoms, history, several bites, and the most telling band on the Western Blot was my band 93, which is "the DNA and genetic material of Borellia".
Longterm is obvious. Gotta do antibiotics and antifungals and periodic low dose frequent dose chelations. The problem with all of them is the vicious Herx reactions, which take someone with no elbow room in the depression department and sink them deeper. I need depression support to endure the treatments I need. Most drugs we all know of are far worse than my Herx reactions. I feel so trapped.
The suicide rate of the Lyme population is about 35%. I can see why.
Whatever damage has been done, whether some environmental insult, genetic, Lyme or whatever, has left me in a situation of sensitivities to foods and chemicals, and with paradoxical reactions being the norm rather than the exception. With that in mind, maybe I need something that almost always causes someone to be depressed. That just might work.
I am brainstorming.
All ideas welcome.
Maybe will be back tomorrow, no guarantees. Goodbye Nortriptyline.
Posted by bleauberry on July 26, 2009, at 19:01:40
In reply to Re: Nortriptyline Bust, posted by SLS on July 26, 2009, at 6:09:28
> > Not cool. Hanging on by threads.
>
> Is there any possibility that using such a low dosage of nortriptyline is producing paradoxical effects such that they would be reversed upon reaching standard therapeutic dosages?
>
> I imagine you will be too scared to try raising the dosage at this point, and I would hate to recommend something that is going to make you feel worse. Which other drugs have produced this same syndrome?
>
>
> - ScottDeeply increased depression is not a side effect, as I see it. The dry mouth, lack of appetite, those are side effects. Deeply increased depression tells me wrong drug wrong person.
Picture a bone thin significantly underweight person at 132 pounds 6 feet tall. Now picture them 6 weeks later at 122 pounds.
Since the weight loss has been so severe in an already frail skinny patient, we'll never know the outcome of what might have happened at higher doses, except that the patient might have died from anorexic conditions trying to find out, if suicide didn't do it first.
Posted by linkadge on July 26, 2009, at 19:39:55
In reply to Re: Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 19:01:40
>Picture a bone thin significantly underweight >person at 132 pounds 6 feet tall. Now picture >them 6 weeks later at 122 pounds.
Hmm. I am 6,2 ft tall and 135 pounds.
Linkadge
Posted by Phillipa on July 26, 2009, at 20:03:51
In reply to Re: Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 19:01:40
Known to be depressing? Klonopin in my experience. Phillipa
Posted by floatingbridge on July 26, 2009, at 21:46:10
In reply to Re: Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 18:04:57
Hi Bleauberry,
I'm sorry this is happening to you. I have little advice or experience. You said parnate was 'neutral'. I have known people who have taken parnate temporarily in a crisis until they stabilized (so, short term). Could other mao's be used this way? emsam, nardil. I know they are scary to someone as sensitive as yourself--to me too. Just a thought. I'm hoping the best for you and soon. Are you drinking any liquid meals? I found a great rice protein, anti-inflammatory powder that tastes mildly good. Sometimes I drink it twice a day hungry or not--it helps. I'll send the name if your interested--and the ingredients list.
please keep posting your progress,
fb
Posted by SLS on July 27, 2009, at 4:56:43
In reply to Re: Nortriptyline Bust » linkadge, posted by SLS on July 26, 2009, at 17:15:00
Linkadge:
> > I am personally learning towards the notion that the TCA's are just generally not all that safe.
>
> What are your concerns?You have been avoiding TCAs, presumably because you have concerns over cardiac function. I hate to see you skip right over an entire class of relatively safe drugs. A number of things about your case point to TCA as being possibly effective - more so than the SSRIs.
Do any of these apply?
1. Melancholic
2. Weight loss
3. Early morning awakenings
4. Worse in the mornings
5. Male
6. First degree relative responding to TCA
7. Areactive
8. Psychomotor retardation
9. AgitationGo get yourself an EKG before starting a TCA and then several times afterwards to screen for conduction problems.
- Scott
Posted by SLS on July 27, 2009, at 5:15:04
In reply to Re: Nortriptyline Bust, posted by bleauberry on July 26, 2009, at 19:01:40
> > > Not cool. Hanging on by threads.
> >
> > Is there any possibility that using such a low dosage of nortriptyline is producing paradoxical effects such that they would be reversed upon reaching standard therapeutic dosages?
> >
> > I imagine you will be too scared to try raising the dosage at this point, and I would hate to recommend something that is going to make you feel worse. Which other drugs have produced this same syndrome?
> Deeply increased depression is not a side effect, as I see it.No, but it could be part of a cluster of other symptoms that represent an untoward drug reaction syndrome. Knowing this might yield a clue as to what to avoid in the future.
> The dry mouth, lack of appetite, those are side effects. Deeply increased depression tells me wrong drug wrong person. So you did experience these other things?
Yes. I have never had a drug start off making me feel worse and then go on to make me feel better. However, at such minute dosages, perhaps there is just enough NE reuptake inhibition to turn off synthesis and release via presynaptic receptor stimulation without producing enough for postsynaptic neuronal concentrations to produce action potentials. I believe that presynaptic autoreceptors are of a higher affinity for ligand than postsynaptic receptors. Just a whacky posit...
As with Linkadge, I hate for you to miss out on TCA. The notion of a biphasic reaction to TCA is really wishful thinking on my part.
> Picture a bone thin significantly underweight person at 132 pounds 6 feet tall. Now picture them 6 weeks later at 122 pounds.
Which drug or drugs have produced this kind of weight loss?
> Since the weight loss has been so severe in an already frail skinny patient, we'll never know the outcome of what might have happened at higher doses, except that the patient might have died from anorexic conditions trying to find out, if suicide didn't do it first.Understood.
> 2. Remeron + ??? (Milnacipran maybe???) (and Ritalin???) HHmmm. That has possibilities.
Sounds hopeful.
Good luck and keep thinking.
- Scott
Posted by linkadge on July 27, 2009, at 15:54:21
In reply to Re: Nortriptyline Bust, posted by SLS on July 27, 2009, at 4:56:43
1. Melancholic
2. Weight loss
3. Early morning awakenings
4. Worse in the mornings
5. Male
6. First degree relative responding to TCA
7. Areactive
8. Psychomotor retardation
9. AgitationWell yes, actually every single one of those appplies. I still do intend to continue with the nortriptyline trial - but I just keep reading bad cardiac crap about the TCA's.
Linkadge
Posted by SLS on July 27, 2009, at 16:31:09
In reply to Re: Nortriptyline Bust, posted by linkadge on July 27, 2009, at 15:54:21
> 1. Melancholic
> 2. Weight loss
> 3. Early morning awakenings
> 4. Worse in the mornings
> 5. Male
> 6. First degree relative responding to TCA
> 7. Areactive
> 8. Psychomotor retardation
> 9. Agitation
>
> Well yes, actually every single one of those appplies. I still do intend to continue with the nortriptyline trial - but I just keep reading bad cardiac crap about the TCA's.I think it is important to determine the probability of an untoward event, and not solely focus on its possibility.
Sure, AV block is a possibility, but just how probable is it? I don't have the answer to this question except to say that I have not yet seen it described on Psycho-Babble, and none of my doctors ever brought it up as an issue. I think it is critical to identify high-risk individuals, though. Is there any history of conduction abnormalities? The elderly should probably be screened for and monitored for such things, including the Brugada syndrome.
I hope nortriptyline comes to be your "magic pill".
;-)
It is going to necessitate a leap of faith on your part to view your elevated heart rate as a relatively benign side effect. Historically, I have seen my HR decrease from 120bpm to 80-90bpm with continued TCA use.
At the very least, I encourage you to use nortriptyline as a biological probe. As an experimental trial, you don't have to commit to taking the drug for the rest of your life. How much damage could it do if you were to take it for two months? If, during those two months, you experience a robust antidepressant effect, it might provide clues for you to use other agents polypharmaceutically to simulate the properties of nortriptyline.
I truly hope you find something that works for you, whatever that may mean.
- Scott
This is the end of the thread.
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