![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 18 to 42 of 42. Go back in thread:
Posted by undopaminergic on May 24, 2008, at 15:09:41
In reply to Re: Nardil Nightmare - very very long » undopaminergic, posted by SLS on May 21, 2008, at 8:06:10
> > Also, hypotension can be treated, with fludrocortisone or stimulants.
>
> Which stimulants are better for this purpose? I was under the impression that Ritalin was the most effective.
>I would expect that anything with a noradrenaline reuptake inhibiting action would have the most stabilising effect. An extended release forumulation of methylphenidate would be a good choice unless its dopaminergic properties cause side effects, in which case atomoxetine or reboxetine may be better choices.
Some theories about MAOI hypotension propose that it results from false neurotransmission by endogenous (and dietary) trace amines that are normally deactivated by MAO; these amines may displace noradrenaline from neuronal storage vesicles, and be released in place of the real neurotransmitter; to the extent that they lack adrenergic agonist activity, they would interfer with the normal activity of NA in regulating blood-pressure. Reuptake inhibitors would reduce the uptake of these amines into neurons and perhaps promote a healthy storage and release of noradrenaline.
Posted by 4WD on May 25, 2008, at 14:03:01
In reply to Update - Please read, posted by Phoenix1 on May 23, 2008, at 11:27:10
Phoenix,
I didn't think it was ever actually the Nardil that caused your problem. You were doing fine on it until you couldn't get it and had to switch to Parnate. So then you had both of them in your system at the same time. I thought that was the source of the problem.
If suicide is the only other option, I wouldn't hesitate to try Nardil again.
Love,
Marsha> Thanks for all your support everyone. Without the Nardil, my depression is worsening daily. My pdoc will not EVER prescribe a MAOI for me again, nor would any other pdoc. My pdoc wants me to go on Zoloft, which is totally useless. I've tried Zoloft and most of the other SSRI's, and they usually worsen things, but have never improved my symptoms. Nardil, on the other hand, was a miracle drug for me.
>
> So my question is what would be the implications of me "self-treating" myself with an MAOI? Supply is not an issue. Would my pdoc fire me as a patient, or have me hospitalized as a danger to myself? I mean, many pdocs continue to treat and monitor patients with addictions to illicit drugs, how would this be different?.
>
> I know that this would be incredibly risky given what happened to me previously on Nardil. But life is not worth living the way I am now, so I feel the risk is justified as the alternative would really only be suicide.
>
> I really feel like these are my only choices right now. I'd like to hear other people's opinions though.
>
> Phoenix
Posted by Kath on May 25, 2008, at 20:55:24
In reply to Re: Update - Please read » Phoenix1, posted by 4WD on May 25, 2008, at 14:03:01
I never thought of it like that! You're right - both meds in system/system overload etc.
Thx for pointing that out. :-) Kath
Posted by Justherself54 on May 26, 2008, at 18:07:54
In reply to Update - Please read, posted by Phoenix1 on May 23, 2008, at 11:27:10
> Thanks for all your support everyone. Without the Nardil, my depression is worsening daily. My pdoc will not EVER prescribe a MAOI for me again, nor would any other pdoc. My pdoc wants me to go on Zoloft, which is totally useless. I've tried Zoloft and most of the other SSRI's, and they usually worsen things, but have never improved my symptoms. Nardil, on the other hand, was a miracle drug for me.
>
> So my question is what would be the implications of me "self-treating" myself with an MAOI? Supply is not an issue. Would my pdoc fire me as a patient, or have me hospitalized as a danger to myself? I mean, many pdocs continue to treat and monitor patients with addictions to illicit drugs, how would this be different?.
>
> I know that this would be incredibly risky given what happened to me previously on Nardil. But life is not worth living the way I am now, so I feel the risk is justified as the alternative would really only be suicide.
>
> I really feel like these are my only choices right now. I'd like to hear other people's opinions though.
>
> PhoenixI think your pdoc may be upset with you but as far as "firing" you I sure hope that wouldn't happen..as far as involuntarily admitting you..that's something I would worry about...I am familiar with my own province's Mental Health Act as I've issued many warrants when I was an active Magistrate. You may want to go online and peruse the criteria a physician in your province must meet to hospitalize you. In your reading, remember there is a difference between the words "may" and "shall"..may means there is leeway..shall..no leeway.
I'll try to gather my remaining brain cells together and see what I can find out. Keep us posted..
Posted by blueboy on May 28, 2008, at 8:27:51
In reply to Nardil Nightmare - very very long, posted by Phoenix1 on May 20, 2008, at 20:57:08
> Hi, anyone here still remember me? I've been gone for a while.
>
> Anyways, I started Nardil in December '07 afer failing to benefit from many, many other AD's and combos. Nardil was a miracle drug, and I was feeling better within a couple of weeks.
>
> Everything went smoothly until my supply of Nardil ran out in March or April due to the manufacturers ineptitude. I was forced to switch to parnate for 2 days rather than suffer withdrawal from stopping 90mg Nardil cold turkey. NOTE: this is technically a no-no, but is infrequently done by pdocs under close medical supervision)That is the biggest load of crap I have ever heard.
#1 -- What is a "technical no-no"? You mean, the drug manufacturer states (for a good reason) that it should not be done under any circumstances and you did it anyway and decided to rationalize this foolish action by calling it "technical" and a "no-no" instead of a well-known dangerous drug combination.
Starting parnate directly on top of 90mg/day of phenelzine is a near guarantee of disaster. I don't see why an MD would do such a thing unless he was just tired of having a medical license. Doctors do it "infrequently" because doctors "frequently" want to keep practicing medicine and avoid malpractice suits.
There is no way that the abrupt discontinuation of Nardil risks the same degree of severe damage as dumping Parnate on top of a high blood level of Nardil.
And then, what, you just started taking Nardil on top of the Parnate?
#2 -- How did your "supply of Nardil run out"? Did you not notice that you only had 5 or 10 pills left? I ran out of Nardil once on vacation and it took me the better part of two days to find some more, but I didn't blame the manufacturer. It just isn't THAT rare of a drug.
I am sorry to be so harsh, and I'm extremely sorry about your terrible ordeal and illness as a result of this. But your blaming everyone except the two responsible people -- yourself and your doctor -- means that you are at risk of repeating the behavior.
Posted by 4WD on May 28, 2008, at 10:12:41
In reply to Re: Nardil Nightmare - very very long, posted by blueboy on May 28, 2008, at 8:27:51
I disagree. Phoenix was unable to get Nardil from the manufacturer. He has posted about calling numerous pharmacies, none of which had any Nardil.
I do agree that starting Parnate with a high level of Nardil in your system was a dangerous move. I think that is what caused Phoenix's trouble. I don't think the Nardil is to blame at all.
That's why I said that if it were me, I'd go back on Nardil with no hesitation. I think the whole issue was because of mixing Parnate and Nardil.
The problem is that his pdoc is not going to let him go back on Nardil because he is seeing the narrow view (and probably trying to cover his *ss).
Again, I think Nardil alone would be the best idea for Phoenix. He should be receiving our support and our prayers that he can get back on it. He just needs to explain to/convince his pdoc that the Nardil + Parnate caused the problem, not the Nardil itself.
Marsha
Posted by Justherself54 on May 28, 2008, at 11:14:20
In reply to Re: Nardil Nightmare - very very long, posted by blueboy on May 28, 2008, at 8:27:51
> > Hi, anyone here still remember me? I've been gone for a while.
> >
> > Anyways, I started Nardil in December '07 afer failing to benefit from many, many other AD's and combos. Nardil was a miracle drug, and I was feeling better within a couple of weeks.
> >
> > Everything went smoothly until my supply of Nardil ran out in March or April due to the manufacturers ineptitude. I was forced to switch to parnate for 2 days rather than suffer withdrawal from stopping 90mg Nardil cold turkey. NOTE: this is technically a no-no, but is infrequently done by pdocs under close medical supervision)
>
> That is the biggest load of crap I have ever heard.
>
> #1 -- What is a "technical no-no"? You mean, the drug manufacturer states (for a good reason) that it should not be done under any circumstances and you did it anyway and decided to rationalize this foolish action by calling it "technical" and a "no-no" instead of a well-known dangerous drug combination.
>
> Starting parnate directly on top of 90mg/day of phenelzine is a near guarantee of disaster. I don't see why an MD would do such a thing unless he was just tired of having a medical license. Doctors do it "infrequently" because doctors "frequently" want to keep practicing medicine and avoid malpractice suits.
>
> There is no way that the abrupt discontinuation of Nardil risks the same degree of severe damage as dumping Parnate on top of a high blood level of Nardil.
>
> And then, what, you just started taking Nardil on top of the Parnate?
>
> #2 -- How did your "supply of Nardil run out"? Did you not notice that you only had 5 or 10 pills left? I ran out of Nardil once on vacation and it took me the better part of two days to find some more, but I didn't blame the manufacturer. It just isn't THAT rare of a drug.
>
> I am sorry to be so harsh, and I'm extremely sorry about your terrible ordeal and illness as a result of this. But your blaming everyone except the two responsible people -- yourself and your doctor -- means that you are at risk of repeating the behavior.
I'd like to answer question #2:No, it's not that rare a drug however, the drug distributor in Canada shorted their supply not once but twice...I know because I was taking Nardil at the time. Both Phoenix and I were fortunate to find a meager supply the first time after days of phone calls to pharmacies...the second time I was able to but he wasn't...so it wasn't that he suddenly discovered he only had X number of pills left...he was frantically searching for it...
As to your closing paragraph, IMO you are way too harsh..his post may say 'very long" but it's the Reader's Digest version of how things went down.
What happened to him is terrible...and I am worried sick about him...if you decide to respond to this post, may I suggest that you read some previous posts between Phoenix and myself regarding the shortages before you insert your other foot..if not..at least have some emphathy for his situation...
This is a support forum and your opening line of "this is the biggest load of crap I have ever heard" just blew me away...
Posted by Phoenix1 on May 28, 2008, at 18:09:11
In reply to Re: Nardil Nightmare - very very long, posted by blueboy on May 28, 2008, at 8:27:51
> That is the biggest load of crap I have ever heard.
Wow, that post felt like a slap in the face. I either didn't make myself clear, or else you totally misinterpreted my post. First of all, I'm not blaming everyone else for what happened. Where in either of my posts did I say anything that implied blame, please show me. I do take responsibility for the treatment decisions I made under the guidance of my psychiatrist. I switched to Parnate after very short washout because I ran out of Nardil. I want to state very very clearly, that this WAS caused by ERFA Canada, who was out of stock of Nardil for close to 3 months. I did everything in my power to prevent running out. I called over 50 pharmacies in my city, and was on the phone daily with ERFA trying to get them to ship me some. Nardil is NOT at all common in my geographcal area, so it isn't stocked by pharmacies. Other posters on this board are also aware of the issues with ERFA Canada, and cn vouch for the fact that there was no stock available for a long period of time.
What do I mean by a "technical no-no"? The monograph states that a 15 day washout is required when switching from one MAOI to another. My washout as in the order of 2 days, or 4 half lives. There is literature to support this type of switch in cases where the full washout would be more dangerous than the risk of the interaction of 2 MAOIs. By dangerous, I'm referring to the risk of suicide or return of a full blown depressive episode. This switch was made fully under the supervision of my pdoc. My blood presure was monitored constantly, and never rose to indicate a hypertensive crisis during this time. I was NEVER on both Nardil and Parnate at the sane time, as you state in your post. I'm not sure where you got that impression.
In any event my problems did not start until well after I was back on Nardil and off the Parnate. As far as I'm concerned The PRES was a result of the rapid Nardil withdrawal.
Anyways, I really shouldn't feel the need to defend myself against what feels like totally unprovoked abuse.
Phoenix
> > Hi, anyone here still remember me? I've been gone for a while.
> >
> > Anyways, I started Nardil in December '07 afer failing to benefit from many, many other AD's and combos. Nardil was a miracle drug, and I was feeling better within a couple of weeks.
> >
> > Everything went smoothly until my supply of Nardil ran out in March or April due to the manufacturers ineptitude. I was forced to switch to parnate for 2 days rather than suffer withdrawal from stopping 90mg Nardil cold turkey. NOTE: this is technically a no-no, but is infrequently done by pdocs under close medical supervision)
>
> That is the biggest load of crap I have ever heard.
>
> #1 -- What is a "technical no-no"? You mean, the drug manufacturer states (for a good reason) that it should not be done under any circumstances and you did it anyway and decided to rationalize this foolish action by calling it "technical" and a "no-no" instead of a well-known dangerous drug combination.
>
> Starting parnate directly on top of 90mg/day of phenelzine is a near guarantee of disaster. I don't see why an MD would do such a thing unless he was just tired of having a medical license. Doctors do it "infrequently" because doctors "frequently" want to keep practicing medicine and avoid malpractice suits.
>
> There is no way that the abrupt discontinuation of Nardil risks the same degree of severe damage as dumping Parnate on top of a high blood level of Nardil.
>
> And then, what, you just started taking Nardil on top of the Parnate?
>
> #2 -- How did your "supply of Nardil run out"? Did you not notice that you only had 5 or 10 pills left? I ran out of Nardil once on vacation and it took me the better part of two days to find some more, but I didn't blame the manufacturer. It just isn't THAT rare of a drug.
>
> I am sorry to be so harsh, and I'm extremely sorry about your terrible ordeal and illness as a result of this. But your blaming everyone except the two responsible people -- yourself and your doctor -- means that you are at risk of repeating the behavior.
Posted by 4WD on May 28, 2008, at 18:29:25
In reply to Re: Nardil Nightmare - very very long » blueboy, posted by Phoenix1 on May 28, 2008, at 18:09:11
Phoenix,
I agree with everything you wrote. You did the very best you could in a situation that really had no good solution. I felt like the above post was a slap in the face to you as well. Just consider the source and let it go. Don't let it get to you. Everyone who has posted to you about this is on your side and no one blames you except whoever it was who wrote that post (I can't remember).So know that I support you 100%. I pray for you daily that God remove your depression and that you be able to get back on Nardil or at the very least some drug that will actually bring you out of your suidcidal depression.
So what are you going to do? I know the feeling when the pdoc wants to put you on some drug (you said Zoloft) and you know already that it won't work. It feels like nothing will work and I understand and sympathize and *emphasize* with your suicidal depression.
On thing is clear. You have to get back on something quick. I think Nardil is the best drug for you since you were doing so well on it before all this crap happened. This is just my opinion. You will have to make your own decision.
Know that I think about you every day and you have my full support and heartfelt prayers.
Love,
Marsha
Posted by Deputy 10derHeart on May 28, 2008, at 18:33:33
In reply to Re: Nardil Nightmare - very very long, posted by Justherself54 on May 28, 2008, at 11:14:20
> ...you are way too harsh..
>
>... before you insert your other foot..
> This is a support forum and your opening line of "this is the biggest load of crap I have ever heard" just blew me away...Please don't post anything that could lead others to feel accused or put down, and please follow site guidelines, i.e., if you think there is a civility issue with a post, please use the Notify the Administrators button instead of posting your comments on the boards.
If you or others have questions about this or about posting policies in general, or are interested in alternative ways of expressing yourself, please see the FAQ: http://www.dr-bob.org/babble/faq.html#civil
Follow-ups regarding these issues should be directed to Admin and should of course be civil. Dr. Bob has oversight over deputy decisions, and he may choose a different action.
-- 10derHeart, posting as deputy for Dr. Bob
Posted by Deputy 10derHeart on May 28, 2008, at 18:33:42
In reply to Re: Nardil Nightmare - very very long, posted by blueboy on May 28, 2008, at 8:27:51
> That is the biggest load of crap I have ever heard.
> And then, what, you just started taking Nardil on top of the Parnate?
>your blaming everyonePlease don't be sarcastic or post anything that could lead others to feel accused or put down.
If you or others have questions about this or about posting policies in general, or are interested in alternative ways of expressing yourself, please see the FAQ: http://www.dr-bob.org/babble/faq.html#civil
Follow-ups regarding these issues should be directed to Admin and should of course be civil. Dr. Bob has oversight over deputy decisions, and he may choose a different action.
-- 10derHeart, posting as deputy for Dr. Bob
Posted by Kath on May 28, 2008, at 19:07:12
In reply to Re: Nardil Nightmare - very very long » blueboy, posted by Phoenix1 on May 28, 2008, at 18:09:11
Hi Phoenix,
((((((((((((you)))))))))))))))
What is the ERFA? I didn't know you were a fellow Canuck.
I think it is shockingly irresponsible of - jeez - I'm not sure WHO - for the medication to NOT be available for that long!
I'm so sorry you had to go through all that & I'm sorry about this added stress.
What I am wanting you to know is that you ARE supported & folks care about you. If you feel like saying how things are going, we're here.
luv, Kath
Posted by Phillipa on May 28, 2008, at 20:13:45
In reply to Re: Nardil Nightmare - very very long » Phoenix1, posted by Kath on May 28, 2008, at 19:07:12
Phoenix on your side too as you did the only thing you could do and yes I remember the posts between just her self and you. No nardil in Canada manufacturer had none. Love Phillipa ps glad to you're able to post again.
Posted by blueboy on May 29, 2008, at 7:35:42
In reply to Re: Nardil Nightmare - very very long » blueboy, posted by Phoenix1 on May 28, 2008, at 18:09:11
I apologize for the harsh and accusatory tone. I am, truly, extremely sorry that you are suffering so much. I think I got angry because I was distressed by the awful stuff you went through.
The MAOI-switching was in the past, so my finger-pointing was not constructive. I realize you need support right now, as the deed is already done, not something you're considering doing.
Again, my heart is with you and on your side. I'll just bite my tongue about the rest, as I should have done in the first place.
Posted by Dr. Bob on May 30, 2008, at 2:02:01
In reply to Re: Nardil Nightmare - very very long, posted by blueboy on May 29, 2008, at 7:35:42
Posted by Kath on May 30, 2008, at 8:03:04
In reply to Re: Nardil Nightmare - very very long, posted by blueboy on May 29, 2008, at 7:35:42
Hi BB - I appreciate this second post.
:-) Kath
Posted by Phoenix1 on May 30, 2008, at 11:19:11
In reply to Re: Nardil Nightmare - very very long » Phoenix1, posted by Kath on May 28, 2008, at 19:07:12
Hi Kath,
ERFA is the Canadian distributor of Nardil. I believe they just import it from a factory in Europe that is a licensed manufacturer.
I really appreciate your support!
Phoenix
> Hi Phoenix,
>
> ((((((((((((you)))))))))))))))
>
> What is the ERFA? I didn't know you were a fellow Canuck.
>
> I think it is shockingly irresponsible of - jeez - I'm not sure WHO - for the medication to NOT be available for that long!
>
> I'm so sorry you had to go through all that & I'm sorry about this added stress.
>
> What I am wanting you to know is that you ARE supported & folks care about you. If you feel like saying how things are going, we're here.
>
> luv, Kath
Posted by Crotale on June 1, 2008, at 11:12:29
In reply to Nardil Nightmare - very very long, posted by Phoenix1 on May 20, 2008, at 20:57:08
Hi there Phoenix. I'm sorry about what you had to go through. There is a possibility that it was the result of the inadequate washout period, and not withdrawal. IIRC, there have been reports of serotonin syndrome-like reactions from combining or switching too fast between MAOIs, *particularly* hydrazine and non-hydrazine ones (e.g., Nardil and Parnate). The drug company monographs are probably overly conservative about MAOI washout periods, but 2 days is still quite a short time for an irreversible MAOI. I've been able to switch from a MAOI to a different one, or to another serotonergic AD, with a washout of a week or a little less with no problems.
On a separate note, since you mention it, I've been having outpatient ECT with incredible success for the last month or so (while simultaneously taking Parnate, BTW), and the only side effects I've observed are mild headaches on the day of the treatment. Depending what type of depression symptoms you have, it might well be worth a try. I recommend against ruling it out entirely, in any case. It's not something to be afraid of.
That said, it sounds like a better choice for you would be to go back on Nardil, if you can get your hands on some. Marplan (if it's available in Canada) might be a better substitute than Parnate if you can't. I think your pdoc is being overly uptight, and if I were in your situation I would seriously consider trying to find a new doc.
Another option you may wish to consider: short-term, fast-acting antidepressants/anxiolytics like benzodiazepines (e.g., Xanax) and opioids (esp. buprenorphine), if your pdoc will prescribe them. (although it sounds like this is unlikely, from what you have said about your pdoc)
There are medications you can use to deal with postural hypotension, although they have side fx of their own. Another option to consider: salt tablets.
Hope I have been of help. Best wishes to you.
Posted by ace on June 5, 2008, at 1:48:01
In reply to Nardil Nightmare - very very long, posted by Phoenix1 on May 20, 2008, at 20:57:08
I have to post my thoughts on this real soon........
Posted by Justherself54 on June 6, 2008, at 18:50:04
In reply to Re: Nardil Nightmare - very very long » Phoenix1, posted by ace on June 5, 2008, at 1:48:01
> I have to post my thoughts on this real soon........
What do you think the risks would be for him to restart Nardil? Would there be a risk for the worsening/reoccurence of PRES or another hypertensive crisis? This is a very unique situation...I would be very interested as to what your thoughts are.
Posted by ace on June 7, 2008, at 0:51:02
In reply to Nardil Nightmare - very very long, posted by Phoenix1 on May 20, 2008, at 20:57:08
> Hi, anyone here still remember me? I've been gone for a while.
>
> Anyways, I started Nardil in December '07 afer failing to benefit from many, many other AD's and combos. Nardil was a miracle drug, and I was feeling better within a couple of weeks.Very good to here...no suprise here.
>
> Everything went smoothly until my supply of Nardil ran out in March or April due to the manufacturers ineptitude.What manafacturer?
I was forced to switch to parnate for 2 days rather than suffer withdrawal from stopping 90mg Nardil cold turkey. NOTE: this is technically a no-no, but is infrequently done by pdocs under close medical supervision)
I have does this myself before. This DOES NOT lesson or stop any Nardil withdrawal, I feel (in most cases). Actually it can make things more confusing and problematic. I see their is a logic in doing this, but it is not simply like swapping to different 'versions' of Nardil- Nardil and Parnate have many pharmacological differences. That being said, we are all different, and I know this has worked for some...
I would NEVER EVER advice abrupt cessation of Nardil 90mg. When I (unfortunately) went of it briefly in the past, I titrated down at a fast rate....The nightmares were particularlt bothersome, in addition to a few other symptoms.
>
> It was when I restarted the Nardil that problems began. For two weeks, i put up with severe orthostatic hypotension. When I began fully fainting, my pdoc got worried and pulled me off the nardil very quickly (over 4 days)
How soon did you restart the Nardil? The OH s/effect doesn't suprise me at all. I'm sure you got others too. These drugs are not lollies- they interfere with many organs of the body- not just the brain....starting/stopping/changing doses...all this contributes to a state of overall unequilibrium. How old is your doc? I assume it was soley his decision to make these quick changes? I am not saying he is bad, their is rationale behind what he was trying I feel....but I think it may have been possible to do things in a slightly more expedient way...which avoided certain problems....
> The night after my first Nardil free day, I woke up blind, confused, with right sided paralysis, and with a 10/10 headache. I went by ambulance to the ER. To make a long story short, I was diagnosed with something called PRES (http://en.wikipedia.org/wiki/Posterior_reversible_encephalopathy_syndrome
> This was caused by too frequent and rapid fluctuations in BP in my brain, th clincher being the Nardil discontinuation.I would say this is very much the case, as exemplified by more aforementioned comments. The PRES does suprise, I have never heard from anyone getting this from MAOI type toxicity (due to sporadic changes in dose/MAOI-type)
I assume the diagnosis was confirmed via both CT and MRI findings????? Not to be subrised, the actual pathophysiological of this syndrome is unknown- however, and this is based on what I have read only, it usually abates within 2 days- that is, as long as treatment is prompt, when diagnosed.
I spent two weeks on the neuro ward, and I am left with partial cortical blindness, and confusion over spatial tasks.
How long have since you left the ward?
> Withdrawal from Nardil was awful too. I spent 48 hours hallucinating.
Once again, no big suprise I feel. Never advisable. Frank psychosis is clearly one of the potential problems of fast cessation from Nardil- in every monograph.
> And after ALL of that, I miss Nardil terribly. My depression and anxiety are back full force, and no pdoc will ever prescribe me a MAOI again. That's my dilemma. My pdoc is suggesting ECT, but I personally wouldn't ever consent to it. So what next?You brain certainly has suffered due to your previous MAOI experiences. I will not blab about the past, EXCEPT to say that I believe you were under clinical advise when making the decisions which ultimately lead to PRES. Hence, I would advise starting Nardil again. That being the case, I would reccomend that this starts after the cessation of your PRES symptoms.
I do think the PRES diagnosis is valid, based on your experieneces with Nardil/Parnate. However I see the symptoms of the diagnosis as ultimately dissipating, rendering you to your 'pre-morbid' state. I am certainly no expert on PRES although, so I must offer that disclaimer.
Also, when you start Nardil starts again, it could take MORE time to set in due to aforementioned circumstances. It could take up to 12 weeks. I see no reason why it would NOT kick in but.I see how you can feel bleak- I feel for you here. Is it possible to start on a drug which is not contraindicated with Nardil, then add Nardil once PRES syndromes have dissipated? For instance Remeron, Xanax, a low dose atypical?? (Actually Remeron IS contraindicated- no reason for it though)
Due to your MD's decisions, which ultimately lead you to PRES, this should in no way nullify another doc prescribing Nardil. Sought out as many as possible.
I really helped this hope mate, in some way. I wish I could do more somehow.
Please keep the faith- I DO think all will turn out OK....
Bless you!
Ace
> Sorry for rambling...
>
> Phoenix
Posted by ace on June 7, 2008, at 1:00:16
In reply to Re: Nardil Nightmare - very very long » ace, posted by Justherself54 on June 6, 2008, at 18:50:04
> > I have to post my thoughts on this real soon........
>
> What do you think the risks would be for him to restart Nardil? Would there be a risk for the worsening/reoccurence of PRES or another hypertensive crisis?Not at all. I think their would be NO risks. But I say that with the caveat that I think he should NOT start Nardil until their is complete cessation of PRES symptomatology.... I would advise he titrate genetly at ALL times.
Most people, from what I saw, suffered PRES in later age, due to a variety of factors, not just including drug toxicity.
I really can't see any problem, the BP irregularities caused by his MAOI adventures, to my way of thinking, will wane out by perforce. I can't see any mechanism whereby the syptoms can continue on in the abscence of any aggravating factors.....
I think all looks good for him, but urge absolute vigilance to keeping the dose and titration nice and steady....his brain does not need any more trauma...Cheers:)
AceThis is a very unique situation...I would be very interested as to what your thoughts are.
>
>
Posted by Phoenix1 on June 7, 2008, at 17:19:52
In reply to Re: Nardil Nightmare - very very long » Phoenix1, posted by ace on June 7, 2008, at 0:51:02
Hi ace, thanks for responding.
> > Everything went smoothly until my supply of Nardil ran out in March or April due to the manufacturers ineptitude.
>
> What manafacturer?ERFA Canada. I believe they import Nardil from a manufacturer in Belgium.
> I was forced to switch to parnate for 2 days rather than suffer withdrawal from stopping 90mg Nardil cold turkey. NOTE: this is technically a no-no, but is infrequently done by pdocs under close medical supervision)
>
> I have does this myself before. This DOES NOT lesson or stop any Nardil withdrawal, I feel (in most cases). Actually it can make things more confusing and problematic. I see their is a logic in doing this, but it is not simply like swapping to different 'versions' of Nardil- Nardil and Parnate have many pharmacological differences. That being said, we are all different, and I know this has worked for some...
>
> I would NEVER EVER advice abrupt cessation of Nardil 90mg. When I (unfortunately) went of it briefly in the past, I titrated down at a fast rate....The nightmares were particularlt bothersome, in addition to a few other symptoms.
> >
> > It was when I restarted the Nardil that problems began. For two weeks, i put up with severe orthostatic hypotension. When I began fully fainting, my pdoc got worried and pulled me off the nardil very quickly (over 4 days)
>
> How soon did you restart the Nardil?I restarted the Nardil about 10 days after stopping I think.
>The OH s/effect doesn't suprise me at all. I'm sure you got others too. These drugs are not lollies- they interfere with many organs of the body- not just the brain....starting/stopping/changing doses...all this contributes to a state of overall unequilibrium. How old is your doc? I assume it was soley his decision to make these quick changes? I am not saying he is bad, their is rationale behind what he was trying I feel....but I think it may have been possible to do things in a slightly more expedient way...which avoided certain problems....
>pdoc is young, late 30's or early 40's. Had not prescribed a MAOI since his residency when he agreed to let me try Nardil
I can't say it was solely his decision. I had a choice between discontinuing Nardil 90mg, almost cold turkey or switching to Parnate. I opted for the latter as at that point I didn't know how long Nardil would be unavailable for, and I was worried about the consequences of a quick withdrawal.
> > The night after my first Nardil free day, I woke up blind, confused, with right sided paralysis, and with a 10/10 headache. I went by ambulance to the ER. To make a long story short, I was diagnosed with something called PRES (http://en.wikipedia.org/wiki/Posterior_reversible_encephalopathy_syndrome
> > This was caused by too frequent and rapid fluctuations in BP in my brain, th clincher being the Nardil discontinuation.
>
> I would say this is very much the case, as exemplified by more aforementioned comments. The PRES does suprise, I have never heard from anyone getting this from MAOI type toxicity (due to sporadic changes in dose/MAOI-type)
>I found one reference to PRES in a young MAOI patient, but that person used a weight loss supplement that contained ephedrine and caffeine concomitantly with phenelzine.
> I assume the diagnosis was confirmed via both CT and MRI findings????? Not to be subrised, the actual pathophysiological of this syndrome is unknown- however, and this is based on what I have read only, it usually abates within 2 days- that is, as long as treatment is prompt, when diagnosed.
>CT and CT-A w/ contrast were negative. They were repeated a week later and were still negative. (2 different hospitals. The firt one discharged me after a day with a wrong diagnosis of conversion disorder. I went right to the second hospital for a second opinion.) Apparently the cerebral edema associated with PRES is not always visible by CT.
An MRI on ~ day 20 confirmed PRES. There was occipital/cerebellum and parietal lobe involvement. MRA showed suspected cerebral vasoconstriction This is how long one has to wait for an MRI in Canada if there isn't a dire, life-threatening condition suspected.
After diagnosis, so much time had transpired that the damage was done, and there was no treatment to give other than reinstating an antihypertensive, as my BP was slightly high.
>> I spent two weeks on the neuro ward, and I am left with partial cortical blindness, and confusion over spatial tasks.
> How long have since you left the ward?
I'm at about 8 weeks from initial symptoms now.
> Your brain certainly has suffered due to your previous MAOI experiences. I will not blab about the past, EXCEPT to say that I believe you were under clinical advise when making the decisions which ultimately lead to PRES. Hence, I would advise starting Nardil again.
>Unforyunately, the odds are stacked against me, as both the neurologist, and consulting mood disorder specialist have advised my pdoc not to restart Nardil unless all other options are explored. So I have to go back on a TCA (Clomipramine) plus Lyrica for anxiety to begin with. I think it's a recipe for failure, and for some really unpleasant side effects and I'm not looking forward to it.
My other option is to switch pdocs, but the specialist's advice will just follow me wherever I go, so I'm not too optimistic about that either.
>That being the case, I would reccomend that this starts after the cessation of your PRES symptoms.
>It's hard to know what symptoms are permanent. At the eight week mark, it seems that MOST people with PRES are back to baseline. I definitely am not. I still have large blind spots, confusion, and frequent headaches.
> Also, when you start Nardil again, it could take MORE time to set in due to aforementioned circumstances. It could take up to 12 weeks. I see no reason why it would NOT kick in but.
>If I ever get the chance to try Nardil again, I am totally willing to be patient and wait that long for a response.
> I see how you can feel bleak- I feel for you here. Is it possible to start on a drug which is not contraindicated with Nardil, then add Nardil once PRES syndromes have dissipated? For instance Remeron, Xanax, a low dose atypical?? (Actually Remeron IS contraindicated- no reason for it though)
>It seems that all the standard AD's are contraindicated with Nardil. Remeron failed to work for me in the past. My pdoc won't treat me with an effective dose of any anti-anxiety med because he is worried that it will be additive to the cognitive impairment I already have from PRES. For example, I'm currently on Lyrica, 25mg TID. This is a totally useless, sub-clinical dose, and doesn't help me in the least, but he won't increase it apparently. Before that, I was on Ativan 0.5mg BID. For me, there was no effect whatsoever, but pdoc wouldn't increase it.
> I really helped this hope mate, in some way. I wish I could do more somehow.Thanks Ace, it actually did help a lot. I'm glad to know that you think re-starting Nardil is a viable option. To me, this gives me some hope in finding a pdoc who will see this too.
I completely agree with what you have to say about Nardil. It's a great AD and anti-anxiety med, and the side-effects aren't nearly as bad as many docs say. For many people with previous treatment failures, I think the MAOIs are an excellent option. Given the chance, I would go back on Nardil in a heartbeat. For me, the benefits just far outweigh the risks.
Phoenix
Posted by bbxtc on June 14, 2008, at 20:34:40
In reply to Re: Nardil Nightmare - very very long » ace, posted by Phoenix1 on June 7, 2008, at 17:19:52
Hi Phoenix,
Long-time listener, first time caller.
First, Phoenix, I've been trying to think of what to say in regards to what happened and what you have to deal with now. I don't have anything that even comes close to good enough, so I'll just say that I'm sorry any of that happened. It really sucks, but I sincerely hope you're dealing as well as you can, and from your posts I think you're doing better than I might...
I've been on Nardil for 4 years now and the difference is night and day. Before I couldn't barely get out of bed and now things that I used to struggle with are easy. It's like I used to be climbing a mountain and now I'm running downhill.
However, around 3 years ago I had a similar situation--the distributor of Nardil had some issues with supply and when I went for a refill I was told I'd have to wait until the distributor could get it resolved.
I went off Nardil cold turkey, thinking nothing of it. Didn't talk to my doc, and by the time I crashed I didn't care enough to call him. I was sleeping upwards of 16 hours a day and having some serious "vivid dreams", some might call them hallucinations (and while some were fun, others had a bad habit of being about snakes, which I'm deathly afraid of). Finally the pharmacy called and I got the Nardil back. And of course went right back on.
Soon after I ate at a Thai restaurant that I had eaten at many times, and ordered a meal I had eaten many times. Up until then I had had headaches and sleeplessness from re-starting the Nardil. While I sat there and finished my appetizer, my heart started pounding, I started sweating and I got a headache that to this day was the worst thing I've ever experienced. My wife quickly took me to the ER (at U of Chicago--randomly enough I saw Dr. Bob once when my regular psych was out...) I don't even remember the BP numbers (my wife does, I always have to ask her), but it was ridiculous. But the docs said the top number was high while the bottom number wasn't so high, so it wasn't as bad as it could have been. And, to agree with a comment made earlier in this thread, I don't think the doctors really knew what to do with me. I was a curiosity on a drug that they studied one day in med school, so I could hear them in the hallway looking through books and talking about how random this was. Plus when I told them exactly what was going on (hypertensive crisis probably because of an MAO-I interaction with some food), they made me spell phenelzine. Maybe I was slurring my words or something, I was in a pretty bad way, but again, not an encouraging situation.
Everything ended up being fine, although all they did was give me ibuprofen because my blood pressure was already dropping when I got to the hospital... Which wasn't very pleasant because I laid there for several hours in really bad pain while they waited for everything to normalize for long enough...
Several things came of this, and I'd recommend them to everyone. First I keep the nifedepine close by in my laptop bag, which is usually within close proximity to me at all times. Second, I always have on hand 2 full months worth of Nardil. The first time I got this much I had to pay out 2 months worth the insurance didn't cover, and every so often I'll mis-time the date and have to pay for another, but it's totally worth it. Third, I'm never going to assume anything and not call my doc. Of course I bother him constantly but that's another issue.
Everything's been fine since--I've never really watched the diet, although I will take it easy on red wine or cheeses and I really have to hold myself back from organ meat (so not), but I'm still a little paranoid and when I get that little twinge headache I'm on the phone instantly.
My life is immeasurably better with Nardil, and I'm aware of the risks (and the consequences of my stupid decisions). At this point I think it's worth it, but stories like Phoenix's put everything in perspective. Again, I hope everything's going well and you find whatever drug or combo gets you back to where you want to be.
BBXTC
Posted by 4WD on June 14, 2008, at 23:16:13
In reply to Re: Nardil Nightmare - very very long, posted by bbxtc on June 14, 2008, at 20:34:40
Phoenix,
I hope you are beginning to feel a little better. I hope you have been able to be put back on Nardil because I really think that is the drug you need. If not, then I hope your doctors have come up with something that will help. I continue to think about you and pray for you.
I have been in the hospital for the last week. I got up in the middle of the night last Thursday to use the bathroom, and felt very faint from a Nardil induced low blood pressure spell. I made it to the bathroom but when I stood up I fainted. I landed on the floor from standing height directly on my buttocks. It hurt but not too bad so I crawled back to bed.
When I woke up the next morning, I couldn't move I was in so much pain in my back. I kept fainting - at least twice more from low BP so my husband called 911 and they took me to the ER. I got a back X-Ray but no breaks showed up so they sent me home.
But by Sunday it was so bad I couldn't stand it. I went to a walk in clinic and told them how much pain I was in, that my urine had turned really dark and that I knew something was badly wrong with me. He did a culture and there was blood and bilirubin in my urine. So back to the ER to a different hospital this time. After two or three days of unremitting pain in my abdomen and back they did a CT scan of my abdomen and caught something that hadn't shown up on X ray - a fractured vertebrae. So I have a broken back.
I have a brace to wear, muscle relaxers, pain meds to take and I'm going to add Mobic tonight so I'll have an anti inflammatory on board.
Anyway, that's why you guys haven't seen me around Babble lately.
Sorry, this post started out being to Phoenix and turned into my story.
Again, Phoenix, I feel so bad for you. Do they have you on ANY meds yet? Please let us know how you are doing.
Love,
Marsha
This is the end of the thread.
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