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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 32. This is the beginning of the thread.
Posted by mantus on July 26, 2011, at 12:48:33
Hello,
So, I went off of Nardil cold turkey after being on varying dosages but mostly 75mg for about 7 months. I did experience some pretty bad headaches and some very vivid dreams early on, and still deal with considerable brain fog and such now. But all in all I haven't had as bad of an experience thus far as I expected. However, the main reason I discontinued the Nardil was due to severe hr and bp issues it caused, and never improved at any point. Now, I have been off of Nardil completely for 6-7days and I STILL have the same problem, an extreme increase in my heart rate upon standing which remains as long as I am standing. It is not orthostatic hypotension, but exactly mirrors the symptoms of POTS (Postural orthostatic tachycardia syndrome). Yesterday for example my hr jumped from about 65 while supine to 130, 135, 137 in 3 measurements over several minutes. Yesterday was horrible. If I stand I have extreme chest tightness, leg weakness, overall body jitteriness and weakness, and basically can't do ANYTHING and have to sit back down. I went to see the p-doc yesterday and he still thinks it will go away, but I don't. I innately feel that Nardil somehow triggered a change in my autonomic nervous system which may likely be permanent. Every day I check my pulse and bp upon standing I am overwhelmed my an extreme level of anger, because AGAIN it feels like a doctor has not listened to me and has likely caused a substantial problem to my body. i am not angry for trying nardil, as I was all about it too. However, for over 3 months I kept saying "there is something wrong with my hr, it is not the same orthostatic hypotension se of Nardil, what should I do?" And for months I was ignored. Finally, my Family Doctor and P-doc one day actually listen to me and say "well, you are right, this is very bad, and you should discontinue the nardil." What if they would have listened to me months ago? I feel like it is very likely that this problem wouldn't be persisting even after complete discontinuation of the medicine. I know that I might need to be off of it completely for longer, but I am absolute enraged every day I wake up to the same problems. In between and during my bouts of depression/anxiety, I have pushed myself to continue to exercise, play sports and exert myself in a way I have my entire life. If this turns out to be another example of doctors completely being negligent in my opinion to my concerns for months and months, I will never again seek any type of help from them. I will make completely my own decisions, and hope to find another doctor that will just listen and understand I know my physical and mental state infinitely more than they do, and they should basically just shut up, and do what I say. Over the past 2 years, I truly believe, no I know, the reason I have been dealing with varying levels of anxiety/depression longer than anytime in the past is because this is the 2nd significant problem completely caused as a result of a doctor being negligent to my very openly spoken concerns. I know that there is possibility that this will subside with time, but as time continues to pass and their is absolutely no improvement, I see that fixing this problem is not as easy as discontinuing Nardil, and everything goes back to normal. I am so angry every day I can't hardly even stand for long periods of time, and don't know where to go from here, especially if anxiety/depressive symptoms were to return.
Mantus
Posted by Phillipa on July 26, 2011, at 12:58:29
In reply to Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on July 26, 2011, at 12:48:33
Both the pdoc and regular doc know? Did the regular doc do some testing EKG? I think further testing is in order? Phillipa
Posted by floatingbridge on July 26, 2011, at 13:19:31
In reply to Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on July 26, 2011, at 12:48:33
Mantus, do not despair. I think it takes a few weeks for the circulating maoi soup to diminish. (Until someone else names the chemicals properly.) I don't see why your heart rate will not return to it's pre-Nardil state. I don't think you broke anything. I don't know anything about how to taper an maoi properly. Did your docs say just stop? Is that how it's done? I really believe your HR/BP will recover. It might take a few weeks.
>
> So, I went off of Nardil cold turkey after being on varying dosages but mostly 75mg for about 7 months. I did experience some pretty bad headaches and some very vivid dreams early on, and still deal with considerable brain fog and such now. But all in all I haven't had as bad of an experience thus far as I expected. However, the main reason I discontinued the Nardil was due to severe hr and bp issues it caused, and never improved at any point. Now, I have been off of Nardil completely for 6-7days and I STILL have the same problem, an extreme increase in my heart rate upon standing which remains as long as I am standing. It is not orthostatic hypotension, but exactly mirrors the symptoms of POTS (Postural orthostatic tachycardia syndrome). Yesterday for example my hr jumped from about 65 while supine to 130, 135, 137 in 3 measurements over several minutes. Yesterday was horrible. If I stand I have extreme chest tightness, leg weakness, overall body jitteriness and weakness, and basically can't do ANYTHING and have to sit back down. I went to see the p-doc yesterday and he still thinks it will go away, but I don't. I innately feel that Nardil somehow triggered a change in my autonomic nervous system which may likely be permanent. Every day I check my pulse and bp upon standing I am overwhelmed my an extreme level of anger, because AGAIN it feels like a doctor has not listened to me and has likely caused a substantial problem to my body. i am not angry for trying nardil, as I was all about it too. However, for over 3 months I kept saying "there is something wrong with my hr, it is not the same orthostatic hypotension se of Nardil, what should I do?" And for months I was ignored. Finally, my Family Doctor and P-doc one day actually listen to me and say "well, you are right, this is very bad, and you should discontinue the nardil." What if they would have listened to me months ago? I feel like it is very likely that this problem wouldn't be persisting even after complete discontinuation of the medicine. I know that I might need to be off of it completely for longer, but I am absolute enraged every day I wake up to the same problems. In between and during my bouts of depression/anxiety, I have pushed myself to continue to exercise, play sports and exert myself in a way I have my entire life. If this turns out to be another example of doctors completely being negligent in my opinion to my concerns for months and months, I will never again seek any type of help from them. I will make completely my own decisions, and hope to find another doctor that will just listen and understand I know my physical and mental state infinitely more than they do, and they should basically just shut up, and do what I say. Over the past 2 years, I truly believe, no I know, the reason I have been dealing with varying levels of anxiety/depression longer than anytime in the past is because this is the 2nd significant problem completely caused as a result of a doctor being negligent to my very openly spoken concerns. I know that there is possibility that this will subside with time, but as time continues to pass and their is absolutely no improvement, I see that fixing this problem is not as easy as discontinuing Nardil, and everything goes back to normal. I am so angry every day I can't hardly even stand for long periods of time, and don't know where to go from here, especially if anxiety/depressive symptoms were to return.
>
> Mantus
Posted by Chris O on July 26, 2011, at 13:59:04
In reply to Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on July 26, 2011, at 12:48:33
I totally relate to you with respect to the "doctors not listening" thing. I have had so many varied and weird symptoms on my ten years of antidepressant experimentation that it is hard to remember all of them. I remember in the late 1990s there was even some denial by a psychiatrist of the sexual side effects I was experiencing. Whatever. Some of these guys just do not have the best empathy skills. It also angers me that we have to be the guinea pigs for all of these medications, as I feel that they are all hit and miss, and poorly understood by the scientific community.
At the same time, I am at least grateful that there is something out there to try for my unrelenting biologically-based anxiety disorder. But when the threat of "permanent" damage to the body comes in, that is a whole another issue. To say your symptoms are disturbing probably does not even begin to describe what you are going through. A pulse rate in the 130s, that is extremely uncomfortable. However, since you were on the medication 7 months, and you've only been off for 1 week, I think there is still hope. Isn't the recommendation 2 weeks off the Nardil before eating any tyramine containing food? If so, that means the medication is still acting your system. Perhaps 3 to 4 weeks (of sheer hell, I know) is a better gage of what's going on. Hang in there. I was just going to start Nardil myself, but decided to try Viibryd, the new SSRI medication first. Good luck and let's hope for the best!
Posted by mantus on July 27, 2011, at 8:36:52
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » mantus, posted by Chris O on July 26, 2011, at 13:59:04
I appreciate everyone's response. I guess one of my biggest frustrations is that I still hold the delusion that I will again one day figure this all out, and return to the very active, sports crazy, person I used to be before the anxiety/depression entered its uglyl head since my 3rd year in college. I know that I should probably be acting more patient, but there was a time about a month ago when I became so fed up with doctors not listening to me and being scared that somehow I really developed POTS through all of this that every single day at some point I basically explode in anger, because I discontinued nardil willing to possibly enter lows in regards to anxiety and depression just so I could feel normally physically again. I did just completely cold turkey Nardil, which my p-doc (who claims that he has given nardil as much or more than any other p-doc in the country during his career) said it would be ok. For the most part, I have been ok, with the exception of about three days of a hellacious headache and vivid dreaming. However, no improvements at all noticed in my hr/bp. The past two days it has actually been as bad as ever, and yesterday i just became pissed and said, "well heart, if you are going to beat fast and hurt my chest I'll give you reason to do it." And went and ran some sprinting intervals which in the end probably wasn't the best idea. It seems like at several times in my struggles with anxiety/depression I have found some levels of strength to try new things (meditation, reading, therapy, eating incredibly healthy, exercise, etc.) But right now, I'm not doing so bad as far as anxiety/depression symptoms (i have absolutely no idea why because I would think they would be bad right now), but because I can't past this serious physical issue, i'm again being hindered from other forms of positive change I'm tryiing to create. I don't want to try therapy right now, because I know me and I will only talk about how pissed i am about the physical symptoms and can't really do any work mentally until it goes away. I know I am rambling, but probably the most scary part is that I just don't see this continued response in studies. It is not orthostatic hypotension, it is exactly the symptoms of POTS. My doctor said that at about 10 days all of Nardil is out of your body and the MAO is basically back to pre-Nardil levels, it is just for liability reasons that drug companies say that you must wait a full 14 days to try something new. However, I will not try anything, which viibryd is the potential med of choice, until this first goes away. Any further ideas, suggestions, or just responses would really help me as everyday I just find myself so angry and wanting to just scream.
Thanks again for your support,
Landon
Posted by mantus on July 27, 2011, at 8:47:49
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » mantus, posted by Phillipa on July 26, 2011, at 12:58:29
> Both the pdoc and regular doc know? Did the regular doc do some testing EKG? I think further testing is in order? Phillipa
I have had several tests done. An EKG really wouldn't show anything, but that my hr jumps dramatically when I stand. I have did a great deal of research about POTS and can find very little to be honest. One common thing is that there appears to be an increased norepenepherine level in plasma vs. people that do not have POTS. I did once see a cariologist and never felt like a doctor was more ignorant and just plain inept in my entire life. It was a complete waste of time and money. I do now know a doc that has much greater experience with POTS, but the thing is, at this point I am still hoping that it regulates on its own as it was caused by being on Nardil. I guess at some point though, I would have to just accept that it could be a permanent problem and then I could see this specialist.
Posted by Chris O on July 27, 2011, at 12:44:57
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on July 27, 2011, at 8:36:52
Landon:
I just want to say how much I empathize with your feelings. I know that I cannot offer a solution, but I hate, hate, hate the whole guinea pig part of taking these drugs. And, I, like you (it seems from your descriptions), am a pretty health/exercise-oriented person. So, that, in itself, makes it all the more ironic/galling that we have to take these often toxic medications to deal with our anxiety and/or depression. I'm still going to hope and pray that these POTS symptoms just decrease for you over time. Keep everyone posted.
Chris
Posted by floatingbridge on July 27, 2011, at 18:56:36
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » Phillipa, posted by mantus on July 27, 2011, at 8:47:49
Landon, when I went off Emsam recently, the maoi effect felt non-linear to me. My second week off was actually a bit more symptomatic. *I am not saying your POTS like condition will worsen*. What I was advised on this very board was that the chemicals circulate for at least two weeks. I would need to look up the post right now to remember. It might have been longer. Someone please feel free to jump in here with some data. Doctors very often minimize the withdrawal windows of medications just as often as they over emphasiize the necessary wash times between meds. Not all doctors of course! But, let's say I have met a few whose ideas did not match my experience.
I know about POTS because I suspect I 'have' it. I have read about it but never sought treatment. I am by no meansbvery knowledgable, but in readings, I have not come across a case of a medicine-induced POTS syndrome that did not eventually remit upon withdrawal of medication. Have you read otherwise? I would be curious to know.
Best wishes to a swift resolve.
>
> I have had several tests done. An EKG really wouldn't show anything, but that my hr jumps dramatically when I stand. I have did a great deal of research about POTS and can find very little to be honest. One common thing is that there appears to be an increased norepenepherine level in plasma vs. people that do not have POTS. I did once see a cariologist and never felt like a doctor was more ignorant and just plain inept in my entire life. It was a complete waste of time and money. I do now know a doc that has much greater experience with POTS, but the thing is, at this point I am still hoping that it regulates on its own as it was caused by being on Nardil. I guess at some point though, I would have to just accept that it could be a permanent problem and then I could see this specialist.
Posted by jono_in_adelaide on July 27, 2011, at 19:50:52
In reply to Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on July 26, 2011, at 12:48:33
It seems unlikely that nardil has permamently changed your autonomic nervous systme - its been around for 50 years and this hasnt been reported.
Give it a couple of weeks to get out of your system before you panic.
Posted by mantus on July 27, 2011, at 20:04:36
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » mantus, posted by Chris O on July 27, 2011, at 12:44:57
> Landon:
>
> I just want to say how much I empathize with your feelings. I know that I cannot offer a solution, but I hate, hate, hate the whole guinea pig part of taking these drugs. And, I, like you (it seems from your descriptions), am a pretty health/exercise-oriented person. So, that, in itself, makes it all the more ironic/galling that we have to take these often toxic medications to deal with our anxiety and/or depression. I'm still going to hope and pray that these POTS symptoms just decrease for you over time. Keep everyone posted.
>
> ChrisI really, realliy appreciate your thoughts, as I am going through something now different than the usual black holes. That is the crazy part. I was so sure I would crash almost immediately upon discontinuing Nardil (especially since I did it cold turkey) But now, instead of the usual anxiety/depression (which are still there at some level but much more managable) I am just left with pure rage every day. The really disappointing part is that after being off of Nardil for 4 days I was experiencing only the traditional headaches, brain fog, vivid dreams, etc. All things I have experienced before and know will go away with enough time. However, the hr issue actually has gotten worse over the past three days where upon standing my hr will go from 60-65 to 135-140. I try to hang in there, but honestly I can't. I'm so sickened by all the random, unexplained garbage that comes and goes through all these drug trials that all I can do is try to make myself walk for as long as I can once a day. And basically just exist in a state of pure anger for the rest of the day, just praying that the day will come when things get better.
Posted by mantus on July 27, 2011, at 20:14:18
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » mantus, posted by floatingbridge on July 27, 2011, at 18:56:36
> Landon, when I went off Emsam recently, the maoi effect felt non-linear to me. My second week off was actually a bit more symptomatic. *I am not saying your POTS like condition will worsen*. What I was advised on this very board was that the chemicals circulate for at least two weeks. I would need to look up the post right now to remember. It might have been longer. Someone please feel free to jump in here with some data. Doctors very often minimize the withdrawal windows of medications just as often as they over emphasiize the necessary wash times between meds. Not all doctors of course! But, let's say I have met a few whose ideas did not match my experience.
>
> I know about POTS because I suspect I 'have' it. I have read about it but never sought treatment. I am by no meansbvery knowledgable, but in readings, I have not come across a case of a medicine-induced POTS syndrome that did not eventually remit upon withdrawal of medication. Have you read otherwise? I would be curious to know.
>
> Best wishes to a swift resolve.
> >
> > I have had several tests done. An EKG really wouldn't show anything, but that my hr jumps dramatically when I stand. I have did a great deal of research about POTS and can find very little to be honest. One common thing is that there appears to be an increased norepenepherine level in plasma vs. people that do not have POTS. I did once see a cariologist and never felt like a doctor was more ignorant and just plain inept in my entire life. It was a complete waste of time and money. I do now know a doc that has much greater experience with POTS, but the thing is, at this point I am still hoping that it regulates on its own as it was caused by being on Nardil. I guess at some point though, I would have to just accept that it could be a permanent problem and then I could see this specialist.
>
>I would welcome a worsening of symptoms, as long as it eventually begins to get better. Actually, the worst 3 days I've ever had with the hr issue have been the past 3 days. The p-doc and I had originially talked about discontinuing the Nardil for 2 weeks then adding viibryd after the washout period. But I told him during the last appt. i'm not putting one more med into my body until this goes away. I will enter another low if I have to, but I'm not going to add something that could possibly worsen these symptoms or prolong them to some degree. My biggest fear is that this hr problem is not going to resolve itself anytime soon, which leaves me in a prime space to relapse hard because the anger is keeping me from thinking positively about anything.
I have did quite a bit of research on POTS, and basically self diagnosed myself months ago as having POTS as brought on by Nardil. Of course, I always thought it would resolve itself when I went off. And I have to admit I haven't found any direct research that has shown a link between a permanent development of POTS brought on by medication, but honestly I can find so little helpful research that I'm not sure it matters. Another concern of mine is that, this "POTS" thing is not a commonly known side effect of Nardil, orthostatic hypotension yes, but not this. Which again just worries me that I might've had something unique inside of me that was like a switch to turn on POTS and that's exactly what Nardil did.
Do you think you have POTS as a result of a medicine or just in general?
Posted by Phillipa on July 27, 2011, at 20:15:13
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » Chris O, posted by mantus on July 27, 2011, at 20:04:36
I must google Pots. I'm so sorry. Phillipa
Posted by mantus on July 27, 2011, at 20:21:40
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist, posted by jono_in_adelaide on July 27, 2011, at 19:50:52
> It seems unlikely that nardil has permamently changed your autonomic nervous systme - its been around for 50 years and this hasnt been reported.
>
> Give it a couple of weeks to get out of your system before you panic.Well, I agree with exactly what you are saying, the problem is there was a moment after dealing with this every day for months and not having any doctor listen to me, that basically I just gave up on any idea positive thoughts of this problem resolving itself. I have been basically living in a state of pure anger every day when I stand and tell it is there again, try to walk and go a very short distance before my body just says no. I am 26 years old, I have played sports and exercised my entire life. Now, I feel like I am 50 years older and because no doctors give me any real confidence that they have any idea why this happened, or that it is even going to resolve on its own, I can't help but be irrate. My other concern is that there also exists little to know research of anyone developing POTS while on Nardil with absolutely no improvement and actually it just worsening over time. It just leaves me thinking that I am the exception to the research, and I'll likely keep thinking that until one day something changes on its own.
Posted by floatingbridge on July 27, 2011, at 21:58:57
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » jono_in_adelaide, posted by mantus on July 27, 2011, at 20:21:40
> > It seems unlikely that nardil has permamently changed your autonomic nervous systme - its been around for 50 years and this hasnt been reported.
> >
> > Give it a couple of weeks to get out of your system before you panic.
>
> Well, I agree with exactly what you are saying, the problem is there was a moment after dealing with this every day for months and not having any doctor listen to me, that basically
I just gave up on any idea positive thoughts of this problem resolving itself. I have been basically living in a state of pure anger every day when I stand and tell it is there again, try to walk and go a very short distance before my body just says no. I am 26 years old, I have played sports and exercised my entire life. Now, I feel like I am 50 years older and because
no doctors give me any real confidence that they have any idea why this happened, or that it is even going to resolve on its own, I can't help but be irrate. My other concern is that there also exists little to know research of anyone developing POTS while on Nardil with absolutely no improvement and actually it just worsening over time. It just leaves me thinking that I am the exception to the research, and I'll likely keep thinking that until one day something changes on its own.
Hi Landon, my current health situation is beyond ridiculous, but my own self dx'd POTS type situation predated medication. I had no idea what the heck it was until about maybe two years ago when I tried to describe to my doctors that standing up was way too fatiguing, that if I could sit, I felt better. Other stuff, too. No one even registered this simple observation. After awhile, just bumped into this POTS thing and just knew if anyone put me on a tilt table, I would have big time trouble.In your case, well, still don't panic, because if it is chemically induced, the chances are it will remit. Have you googled medically induced POTS or sudden onset POTS? I think the point Jono makes is a good one. Either way, you won't know until you have the Nardil out of your system which might be longer than two weeks.
All that said, that someone is not taking your very real medical situation a little more seriously seems medically unsound. Your pdoc knows and just says wait? Your gp knows? I, too have spent precious time with experts to end up feeling like, wow, I am justva piddling person and how come I know information than this particular specialist. I've often thought that in very few professions does one have to pay money up front for a service without any garuntee of performance than medicine. This is not saying I demand a cure for my money. That would be absurd. But I have paid line $800 dollars to be patronized and told it's in my head or it's a sx of depression. I mean, well yeah. But that doesn't mean there are not comorbidities that deserve medical attention. Dollars to doughnuts, if I did not mention *my* depression, some people would take things a bit differently.
That was my vent :-/. I am not too keen about you having to go through the extremes you are describing alone. Can you see a therapist (insurance?) because anger is a legitimate feeling, so is panic and being concerned about your health. Not to mention the physical aspects you describe.
Posted by mantus on July 28, 2011, at 15:44:07
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » mantus, posted by floatingbridge on July 27, 2011, at 21:58:57
> > > It seems unlikely that nardil has permamently changed your autonomic nervous systme - its been around for 50 years and this hasnt been reported.
> > >
> > > Give it a couple of weeks to get out of your system before you panic.
> >
> > Well, I agree with exactly what you are saying, the problem is there was a moment after dealing with this every day for months and not having any doctor listen to me, that basically
> I just gave up on any idea positive thoughts of this problem resolving itself. I have been basically living in a state of pure anger every day when I stand and tell it is there again, try to walk and go a very short distance before my body just says no. I am 26 years old, I have played sports and exercised my entire life. Now, I feel like I am 50 years older and because
> no doctors give me any real confidence that they have any idea why this happened, or that it is even going to resolve on its own, I can't help but be irrate. My other concern is that there also exists little to know research of anyone developing POTS while on Nardil with absolutely no improvement and actually it just worsening over time. It just leaves me thinking that I am the exception to the research, and I'll likely keep thinking that until one day something changes on its own.
>
>
> Hi Landon, my current health situation is beyond ridiculous, but my own self dx'd POTS type situation predated medication. I had no idea what the heck it was until about maybe two years ago when I tried to describe to my doctors that standing up was way too fatiguing, that if I could sit, I felt better. Other stuff, too. No one even registered this simple observation. After awhile, just bumped into this POTS thing and just knew if anyone put me on a tilt table, I would have big time trouble.
>
> In your case, well, still don't panic, because if it is chemically induced, the chances are it will remit. Have you googled medically induced POTS or sudden onset POTS? I think the point Jono makes is a good one. Either way, you won't know until you have the Nardil out of your system which might be longer than two weeks.
>
> All that said, that someone is not taking your very real medical situation a little more seriously seems medically unsound. Your pdoc knows and just says wait? Your gp knows? I, too have spent precious time with experts to end up feeling like, wow, I am justva piddling person and how come I know information than this particular specialist. I've often thought that in very few professions does one have to pay money up front for a service without any garuntee of performance than medicine. This is not saying I demand a cure for my money. That would be absurd. But I have paid line $800 dollars to be patronized and told it's in my head or it's a sx of depression. I mean, well yeah. But that doesn't mean there are not comorbidities that deserve medical attention. Dollars to doughnuts, if I did not mention *my* depression, some people would take things a bit differently.
>
> That was my vent :-/. I am not too keen about you having to go through the extremes you are describing alone. Can you see a therapist (insurance?) because anger is a legitimate feeling, so is panic and being concerned about your health. Not to mention the physical aspects you describe.
>
>Well, here is the full story. I was working at a state psychiatric facility that has been going through many changes in administration (horrible changes and horrible people i might add). Morale around the hospital is at an all time low, including me. I'm sure working in this environment has not helped anything as my hr symptoms just continued to persist and be quite debilitating. Finally, I said enough is enough, I can't take this anymore. I went to my doctors for the 10 thousandth time saying "either fix this hr problem or I'm stopping it today." In which case they both said, well, honestly we should've told you to quit a long time ago because it is not getting any better. So, I knew going off of Nardil cold turkey combined with the hr issues would be pure hell, and trying to force myself to keep going to a job that was now also hell just seemed ridiculous. So, luckily I have very supportive parents and a 3 month leave from work to figure this stuff out. Unfortunately, I prepared myself for terrible nardil withdrawals and possible rebound anxiety/depression, but did not at all expect this hr issue to stay and actually get even worse. Today, I took my pulse while standing and it was 146, 148, 153 over about a 5 minute time frame. These are the 3 highest numbers I've ever seen during this whole problem. So, basically I just cursed the world again, thought about breaking a few things, and laid down because that's about all I can do. I am absolutely terrified this situation is not going to resolve itself, no one (not even any doctors) to understand why this has happened to me. Meanwhile, my 3 month countdown is ticking. I was planning on really doing some positive work for myself while on this leave and definitely find counseling. However, I don't want my counseling sessions to be nothing but me ranting about physical symptoms I can't control. I was really hoping to work through the 2 week washout period, have the hr issues resolved, and reevaluate as to the necessity of immediately starting something else, while also beginning counseling. But that, and my entire life is put on hold as all I can do is pray that these symptoms will go away. If not, I'm terrified of what might happen during some sort of very low period when my mind is doing so poorly, only to be combined with a body that can't even fight if it wanted to.
Posted by emmanuel98 on July 28, 2011, at 21:01:51
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » floatingbridge, posted by mantus on July 28, 2011, at 15:44:07
Maybe it's just a coincidence that this happened when you went off nardil, since there's no reports anywhere of nardil causing this (have you checked the FDA website? That's the most thorough.) Maybe you should see a cardiologist, get an EKG standing and lying down to try to figure out what is going on. It may have nothing to do with Nardil.
Posted by mantus on July 28, 2011, at 21:19:05
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist, posted by emmanuel98 on July 28, 2011, at 21:01:51
> Maybe it's just a coincidence that this happened when you went off nardil, since there's no reports anywhere of nardil causing this (have you checked the FDA website? That's the most thorough.) Maybe you should see a cardiologist, get an EKG standing and lying down to try to figure out what is going on. It may have nothing to do with Nardil.
No, it began with Nardil. I first had traditional orthostatic hypotension symptoms as documented again and again as a common side effect of Nardil. However, that changed, my bp no longer drops when standing, but my hr explodes beyond anything I have ever experienced before. Even when I was experiencing orthostatic hypotension, my hr never went nearly this high. I am troubled because I told doctors for months that this was happening and yet they just ignored me essentially. I know I am responsible for my own well being, however this was my first trial with an maoi and I had no idea what to expect, so I thought for months, maybe this is just something I have to go through. However, after doing my own research I realized it wasn't at all a normal side effect, and my p-doc knew that and should've at least fully discussed my concerns so I could have made the decision to drop it months ago. I truly felt that by dropping the Nardil I would see at least some marginal level of improvement after 10 days, but if anything it is actually worse, and I'm terrified because the research I have did on POTS basically shows that it can be treated to some extent, but that's all. I have played sports and been active my entire life, even in between some of my worst bouts of depression. I have had EKG's done, and they just show an increased hr upon standing, it wouldn't really show anything else. And a tilt table test is not necessary because I know for a fact what my body does when I stand. I'll keep people up to date, but seeing a specialist at this point really doesn't help matters, because this has all been caused by Nardil and quite frankly i don't want to just take a medicine to mask the effects until I know 100 percent for sure that it won't go away with time being off of Nardil.
Posted by floatingbridge on July 28, 2011, at 22:05:45
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » emmanuel98, posted by mantus on July 28, 2011, at 21:19:05
Landon, I researched at pubmed a bit. I saw a journal entry from 1964 (!) about vascular complications of maoi's, but it was just the title. No info. I tried researching sudden onset pots and medicine induced pots without much luck. Apparently, HR you are reporting are, well, the info is mixed. It's said they aren't dangerous, but terrible to endure, and the HR alone creates a lack of oxygen that causes extreme fatigue (but not brain damage). If it doesn't resolve, then there are treatments. One is a beta blocker which has already been mentioned and I think you rejected. I don't know anything about beta blockers.... But what if (just the idea of a non-scientist here) you could by a beta blocker get your heart rate down? You might find the intense (justified) anger toning tone into a workable size.
It was also said tachardya (sp!) is in some instances attributed to anxiety. You know some people experience anxiety as purely physical and skip the whole psychological piece--the way some are physically depressed but do not have emotional or psychological symptoms. So, in this light, you could be experiencing extreme rebound anxiety that is triggering pots. The tachardya you report alone will produce profound physical effects-- like not being able to stand or walk across the room.
Maybe you can try a beta blocker just to get this to stop sooner. Maybe it's looping. Maybe it will just go away very soon and you will be happily surprised to regain your health. I guess I am not sure the extremes you are suffering are better than the risk of considering a short course of a beta blocker. But someone jump in here, because I do not know anything about beta blockers.
So sorry this is happening to you. I am optimistic on your behalf.
> > Maybe it's just a coincidence that this happened when you went off nardil, since there's no reports anywhere of nardil causing this (have you checked the FDA website? That's the most thorough.) Maybe you should see a cardiologist, get an EKG standing and lying down to try to figure out what is going on. It may have nothing to do with Nardil.
>
> No, it began with Nardil. I first had traditional orthostatic hypotension symptoms as documented again and again as a common side effect of Nardil. However, that changed, my bp no longer drops when standing, but my hr explodes beyond anything I have ever experienced before. Even when I was experiencing orthostatic hypotension, my hr never went nearly this high. I am troubled because I told doctors for months that this was happening and yet they just ignored me essentially. I know I am responsible for my own well being, however this was my first trial with an maoi and I had no idea what to expect, so I thought for months, maybe this is just something I have to go through. However, after doing my own research I realized it wasn't at all a normal side effect, and my p-doc knew that and should've at least fully discussed my concerns so I could have made the decision to drop it months ago. I truly felt that by dropping the Nardil I would see at least some marginal level of improvement after 10 days, but if anything it is actually worse, and I'm terrified because the research I have did on POTS basically shows that it can be treated to some extent, but that's all. I have played sports and been active my entire life, even in between some of my worst bouts of depression. I have had EKG's done, and they just show an increased hr upon standing, it wouldn't really show anything else. And a tilt table test is not necessary because I know for a fact what my body does when I stand. I'll keep people up to date, but seeing a specialist at this point really doesn't help matters, because this has all been caused by Nardil and quite frankly i don't want to just take a medicine to mask the effects until I know 100 percent for sure that it won't go away with time being off of Nardil.
Posted by Phillipa on July 28, 2011, at 22:22:07
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » emmanuel98, posted by mantus on July 28, 2011, at 21:19:05
I agree don't compound the problem. Know the feeling of work enviornments with added stress. The leave of absense is a great idea. Just get another opinion please? I do care Phillipa
Posted by mantus on July 28, 2011, at 22:39:18
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » emmanuel98, posted by mantus on July 28, 2011, at 21:19:05
I can't thank you all enough for the concern, support and just plain effort you have shown me in this situation. My dad and I are basically best friends, and he is about the only person who really knows the depths of the anxiety/depression issues I have had over the past 5 years or so, and i tell him constantly how I'm amazed by the people on this board. I have had very bad luck with medicines, doctors, and being unresponsive to most any kind of medicine I've ever tried. In almost every case, I swear my body just doesn't respond in a way similar to most other people, be that positive response, dosage ranges, or even side effects (this is the 2nd med I've had a very strange/debilitating response to).
On another note, but not nearly as important as the hr stuff, does anybody have experiences on discontinuation symptoms they had after coming off of Nardil and general time frames for some of the traditional symptoms to subside a bit? I was prepared for this part, and still have horrible headaches, brain fog, overall body jitters (but not really the anxiety I've sought treatment for in the past) and general feeling awful physically mostly. I'm still surprised at the fact that as of now the rebound anxiety/depression symptoms aren't as easily distinguishable, at least not right now. I've decided that over the next several days I'm just going to try to find anything possible to help with temporary relief from my anger and worries. Tomorrow I've decided to get my first ever massage. I've also thought about acupuncture but know very little about it. Anybody have any other suggestions of things I could do that basically involve no phyiscal effort, but may promote relaxation. I do meditate daily.
Thank you all again so much.
Posted by floatingbridge on July 28, 2011, at 23:08:26
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on July 28, 2011, at 22:39:18
I love acupuncture. I also have had good luck with gentle herbal formulas of TCM ( not now for you, but for reference). I suggest getting an accupunturist who will not treat aggressively but with gentle support.
Very best to you.
Posted by mantus on August 1, 2011, at 21:43:17
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist » mantus, posted by floatingbridge on July 28, 2011, at 23:08:26
Well, I know before I even write this that no one will agree with my decision, but I have come to a point in my life so tired and angry from what can only be described as a very bad place as a result of listening to doctors, that I have decided to take my life back. As described before i have developed a very strange hr issue as a side effect from Nardil. I'm not mad at my doctor for suggesting I try it because after doing a good deal of research it did seem to be a very good option after endless trials on ssri's that did no good. What I am absolutely livid about is that my doctor(s) completely ignored me each time I said, "I know there is something wrong with this one particular side effect, it is bad and it is not getting any better." After months of being on it and saying over and over again that something was wrong, they finally agreed and said I should drop it. Now, I'm still left with this issue, which I am still very concerned about and just hope to find some sort of answer soon. (Not trying to scare anyone from Nardil, just my own reaction to it)
Now, on to my next decision. I was put on Ativan about a year and a half ago as a direct result of being put on Geodon for absolutely no reason. I have had serious issues with anxiety and depression over the past 5 years, but that is it. I work at a psychiatric hospital (well, not currently because I am on leave to figure out this hr issue), and have a fairly decent background in psychiatric diagnoses. I have truly never displayed any symptoms of Bipolar Disorder or anything remotely mentioned in the DSM IV that would lead to thinking Geodon would be beneficial. Especially considering at the time I hadn't tried anything except a never ending cycle of ssri's and still to this day haven't tried a TCA. Anyway, within days of taking it solely out of trusting my doctor and deep down knowing it wasn't right for me it sent me into a unrelenting level of anxiety that would be the one time I would have truly considered myself suicidal. At that time it was vitally necessary to get some sort of relief just to able to make the next day. So, I was given Ativan. Unfortunately, I did not even remotely respond to it until I was on 2mg tid. So, through the support of my awsome family and just plain time, I finally had some relief from anxiety, however, I was now "stuck" on Ativan. I continued to take it as advised as my doctor even though I honestly feel like it does nothing for me, except if I miss a dose for too long I feel like I'm already starting to withdraw. So, it kind of just hit me, why am I doing this? It is not benefitting me in any way, and the longer I stay on it (now at 1.5mg tid) the harder it would be to go off. Again, being on a medication that is only hurting me as a result of listening to doctors.
Ok, I promise this is the point. I am home now, with a random hr issue, and addicted to a medicine that doesn't help at all because I stopped ultimately listening to my own body and making decisions for myself. I am now making my own decisions, even though it may be difficult. I have decided to go off of Ativan as quickly as possible. I know no one would support this decision, but to me it is now or possibly never. I have 3 months of FMLA leave and basically I don't see when else I'll be able to do this because ultimately I plan to be working and dealing with more of other life issues, when trying to get off of this medicine that is not doing anything positive and possibly only hurting me.
My question to everyone is how to help manage the withdrawal symptoms because I know it is going to be bad. Are there any things you could suggest to make it easier? I am not going to go completely cold turkey, but pretty darn close. Today I took 1/2mg this morning, fought horrible withdrawals all day after about 2pm and just took 1mg to hopefully help with sleep. My intentions are to continue pushing downward as quickly as possible and only taking something small if it gets too rough. Tomorrow my plan is to take .5mg in the morning, .25mg in the afternoon, and .75mg at night because today was pretty rough without any midday dose. I might try this for a few days to see if it becomes more easy with time before reducing the dose again, my intentions are to take .25mgs away each day as deemed best until I am completely off and then deal with hell, until hopefully my body adjusts. The one thing I absoluetely don't understand and am very grateful at this point is that I am not currently feeling the abnormal anxiety/depression symptoms nearly to the same degree I have in the past, which makes me more willing to fight when my whole body is hurting. I know this is a very long post, it is just that as I really look back on the past couple years of my life, I have found myself in this very bad place because I listened to doctors and not myself.
I know of the seizure possibilities with fast benzo withdrawal, and I guess that is just a small chance I am taking. Any knowledge of long term issues from discontinuing to quickly? I will always read suggestions because I think so highly of people on this board, but without some drastic change this is a course I'm pretty much set on. I'd really appreciate any support or ideas on if there is anything out there to help during this time.
Posted by floatingbridge on August 1, 2011, at 22:02:36
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on August 1, 2011, at 21:43:17
Mantis, listen. I just tried a fast taper from xanax and got fried. Really. Please be so careful. Would you please consider working with a doctor on this? That is my advice and subjective opinion. Maybe you can do this your way. I really want you to succeed.
Others here maybe can advise you on a wise taper. A poster named 49er knows lots about taper. If you weren't already
presenting with health issues, I wouldn't probably post. There is something to be said about taking longer to achieve a
goal. My advice is to stabilize your heart rate. Withdrawal can be stressful. Once you gain that baseline, go forward. I
believe you can still work while doing a very slow taper. Slow reduces any rebound effects. Some people have none. Maybe you won't too. Please take my advice into
consideration when you make your decision. I hear that you want to take control over your body. I'm not sure withdrawing rapidly from two meds at once is the way to go. What does your dad think of this?My continued best wishes to you.
> Well, I know before I even write this that no one will agree with my decision, but I have come to a point in my life so tired and angry from what can only be described as a very bad place as a result of listening to doctors, that I have decided to take my life back. As described before i have developed a very strange hr issue as a side effect from Nardil. I'm not mad at my doctor for suggesting I try it because after doing a good deal of research it did seem to be a very good option after endless trials on ssri's that did no good. What I am absolutely livid about is that my doctor(s) completely ignored me each time I said, "I know there is something wrong with this one particular side effect, it is bad and it is not getting any better." After months of being on it and saying over and over again that something was wrong, they finally agreed and said I should drop it. Now, I'm still left with this issue, which I am still very concerned about and just hope to find some sort of answer soon. (Not trying to scare anyone from Nardil, just my own reaction to it)
>
> Now, on to my next decision. I was put on Ativan about a year and a half ago as a direct result of being put on Geodon for absolutely no reason. I have had serious issues with anxiety and depression over the past 5 years, but that is it. I work at a psychiatric hospital (well, not currently because I am on leave to figure out this hr issue), and have a fairly decent background in psychiatric diagnoses. I have truly never displayed any symptoms of Bipolar Disorder or anything remotely mentioned in the DSM IV that would lead to thinking Geodon would be beneficial. Especially considering at the time I hadn't tried anything except a never ending cycle of ssri's and still to this day haven't tried a TCA. Anyway, within days of taking it solely out of trusting my doctor and deep down knowing it wasn't right for me it sent me into a unrelenting level of anxiety that would be the one time I would have truly considered myself suicidal. At that time it was vitally necessary to get some sort of relief just to able to make the next day. So, I was given Ativan. Unfortunately, I did not even remotely respond to it until I was on 2mg tid. So, through the support of my awsome family and just plain time, I finally had some relief from anxiety, however, I was now "stuck" on Ativan. I continued to take it as advised as my doctor even though I honestly feel like it does nothing for me, except if I miss a dose for too long I feel like I'm already starting to withdraw. So, it kind of just hit me, why am I doing this? It is not benefitting me in any way, and the longer I stay on it (now at 1.5mg tid) the harder it would be to go off. Again, being on a medication that is only hurting me as a result of listening to doctors.
>
> Ok, I promise this is the point. I am home now, with a random hr issue, and addicted to a medicine that doesn't help at all because I stopped ultimately listening to my own body and making decisions for myself. I am now making my own decisions, even though it may be difficult. I have decided to go off of Ativan as quickly as possible. I know no one would support this decision, but to me it is now or possibly never. I have 3 months of FMLA leave and basically I don't see when else I'll be able to do this because ultimately I plan to be working and dealing with more of other life issues, when trying to get off of this medicine that is not doing anything positive and possibly only hurting me.
>
> My question to everyone is how to help manage the withdrawal symptoms because I know it is going to be bad. Are there any things you could suggest to make it easier? I am not going to go completely cold turkey, but pretty darn close. Today I took 1/2mg this morning, fought horrible withdrawals all day after about 2pm and just took 1mg to hopefully help with sleep. My intentions are to continue pushing downward as quickly as possible and only taking something small if it gets too rough. Tomorrow my plan is to take .5mg in the morning, .25mg in the afternoon, and .75mg at night because today was pretty rough without any midday dose. I might try this for a few days to see if it becomes more easy with time before reducing the dose again, my intentions are to take .25mgs away each day as deemed best until I am completely off and then deal with hell, until hopefully my body adjusts. The one thing I absoluetely don't understand and am very grateful at this point is that I am not currently feeling the abnormal anxiety/depression symptoms nearly to the same degree I have in the past, which makes me more willing to fight when my whole body is hurting. I know this is a very long post, it is just that as I really look back on the past couple years of my life, I have found myself in this very bad place because I listened to doctors and not myself.
>
> I know of the seizure possibilities with fast benzo withdrawal, and I guess that is just a small chance I am taking. Any knowledge of long term issues from discontinuing to quickly? I will always read suggestions because I think so highly of people on this board, but without some drastic change this is a course I'm pretty much set on. I'd really appreciate any support or ideas on if there is anything out there to help during this time.
Posted by Chris O on August 1, 2011, at 23:43:08
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on August 1, 2011, at 21:43:17
Mantus:
We are all different, so I do not know if my situation is anyplace close to yours. But I'd like to share me experience with 6 to 8 months on a benzo: I took Klonapin, 2-3mg a day, for the greater part of a year in 2009, I think. I have a very bad anxiety disorder. However, the Klonapin really only glazed over the surface of it. After giving it that 8 month go, I just decided to quit. I went off of it quickly, cold turkey, pretty much, and only had minor withdrawal symptoms. (For instance, they were nothing like the withdrawals I had after taking Effexor for two weeks and then stopping cold turkey.) But that is just me. Who knows why I didn't get bad benzo withdrawals? I also stopped 1200mg of Serzone pretty much cold turkey about 5 months ago, and didn't get very many withdrawal effects either. However, when going off Paxil, I did. Go figure. It sounds like floatingbridge's approach is a good, safe one, though: Take it slow and see what happens. That's what I would do if the withdrawals were bad for me. Good luck!
Chris
Posted by emmanuel98 on August 2, 2011, at 19:38:00
In reply to Re: Went off nardil 1 week ago. HR/BP problems persist, posted by mantus on August 1, 2011, at 21:43:17
A friend of mine went off xanax pretty much cold turkey after years of taking it as prescribed. Luckily for her, she did not have seizures. Make sure you taper slowly enough to prevent seizures. Abrupt benzo withdrawal is considered life-threatening and is often done in a hospital detox program.
Anyway, my friend had cognitive issues that took some time to resolve. Mixing up words, things like that. It got better after a few months. She had been on xanax for 20 years though, so probably it won't be as bad for you.
Just be careful.
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