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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 9 of 9. This is the beginning of the thread.
Posted by Jennifer on June 13, 2000, at 2:53:28
I don't know that anyone can really reply to this, but I'm up and feeling scared. Went to a magnificent endocrinologist today at Cedar Sinai Medical Center, after making the rounds with all my other doc's for the last 6 months. I went there because I felt I had Cushing's Disease. She told me out of every 100 that see her, only 1 has it. Well, she did my exam and reviewed my history for 1.5 hrs! She said she was severly suspicious that it was Cushing's, and wondered why nobody else noticed the symptoms...no one ever does when you seem depressed and have panic attacks. At any rate, she needs to do several tests, over a couple months. In order to do them, she needs me to discontinue ALL of my meds. No more Nardil, Aldactone, Xanax, or Pepcid. I'm feeling like this summer is going to be spent in the psych ward. She was very understanding about my reluctance to stop the meds, but I really do want to get to the reason I feel like crap. So I agreed to wean down the Nardil over 4-5 days. The Aldactone is no problem to DC, and I take the xanax infrequently enough that I shouldn't have any withdrawal symptoms. Does anyone have an idea on how fast I can wean down the Nardil and not feel awful? What type of withdrawal symptoms have any of you experienced? The faster I get off, the faster we can diagnose this, and get on with life. Thanks for any advice. Jennifer
Posted by tina on June 13, 2000, at 10:58:36
In reply to Scared, but I have to stop all meds!, posted by Jennifer on June 13, 2000, at 2:53:28
>Jen: Don't know anything about the meds, I just wanted to send you my support and love in your time of confusion and fear. I can understand your reluctance to get off meds, daunting to say the least but I think you are courageous and strong and you'll come out fine. Take care and know that I'll be thinking of you.--Tina
I don't know that anyone can really reply to this, but I'm up and feeling scared. Went to a magnificent endocrinologist today at Cedar Sinai Medical Center, after making the rounds with all my other doc's for the last 6 months. I went there because I felt I had Cushing's Disease. She told me out of every 100 that see her, only 1 has it. Well, she did my exam and reviewed my history for 1.5 hrs! She said she was severly suspicious that it was Cushing's, and wondered why nobody else noticed the symptoms...no one ever does when you seem depressed and have panic attacks. At any rate, she needs to do several tests, over a couple months. In order to do them, she needs me to discontinue ALL of my meds. No more Nardil, Aldactone, Xanax, or Pepcid. I'm feeling like this summer is going to be spent in the psych ward. She was very understanding about my reluctance to stop the meds, but I really do want to get to the reason I feel like crap. So I agreed to wean down the Nardil over 4-5 days. The Aldactone is no problem to DC, and I take the xanax infrequently enough that I shouldn't have any withdrawal symptoms. Does anyone have an idea on how fast I can wean down the Nardil and not feel awful? What type of withdrawal symptoms have any of you experienced? The faster I get off, the faster we can diagnose this, and get on with life. Thanks for any advice. Jennifer
Posted by Kath on June 13, 2000, at 16:35:14
In reply to Scared, but I have to stop all meds!, posted by Jennifer on June 13, 2000, at 2:53:28
Jennifer - I don't have any answers re the meds, & I don't know what Cushing's disease is, but I want you to know that my thoughts & love are with you. It must feel very scarey - like having the rug pulled out from under you, I would think. I'll be thinking of you.
Kath
> I don't know that anyone can really reply to this, but I'm up and feeling scared. Went to a magnificent endocrinologist today at Cedar Sinai Medical Center, after making the rounds with all my other doc's for the last 6 months. I went there because I felt I had Cushing's Disease. She told me out of every 100 that see her, only 1 has it. Well, she did my exam and reviewed my history for 1.5 hrs! She said she was severly suspicious that it was Cushing's, and wondered why nobody else noticed the symptoms...no one ever does when you seem depressed and have panic attacks. At any rate, she needs to do several tests, over a couple months. In order to do them, she needs me to discontinue ALL of my meds. No more Nardil, Aldactone, Xanax, or Pepcid. I'm feeling like this summer is going to be spent in the psych ward. She was very understanding about my reluctance to stop the meds, but I really do want to get to the reason I feel like crap. So I agreed to wean down the Nardil over 4-5 days. The Aldactone is no problem to DC, and I take the xanax infrequently enough that I shouldn't have any withdrawal symptoms. Does anyone have an idea on how fast I can wean down the Nardil and not feel awful? What type of withdrawal symptoms have any of you experienced? The faster I get off, the faster we can diagnose this, and get on with life. Thanks for any advice. Jennifer
Posted by shellie on June 14, 2000, at 0:25:07
In reply to Re: Scared, but I have to stop all meds! » Jennifer, posted by Kath on June 13, 2000, at 16:35:14
Hi Jennifer. I went off Nardil several years ago and waited the two weeks or so to try other ad which had come on the market. I had no withdrawal symptoms, nothing physical like people describe going off an ssri. However, the new meds did not work for me and I had to wait again to go on Nardil and then wait for it to take effect. That was really hard. I crashed into a painful depression. I went into the hospital twice during that time; each time for a week. It was not awful to be there--I had been in the hospital for five weeks, three years before and I knew the unit. I knew why I was there and that the Nardil would build up again and it would be okay. But I wasn't able to work during those few weeks, and since I run a business from my home and live alone, it was best to leave. I hesitate to tell you that it was really really hard for me, but I guess I think you need a plan for what action you will take if you get very depressed. (Really, you might not, or experience only mild depression). It's just that having a safe plan (just in case) worked for me, so I wanted to pass that on. I think you are being very brave. shellie
Posted by Jennifer on June 14, 2000, at 2:05:46
In reply to Re: Scared, but I have to stop all meds!, posted by shellie on June 14, 2000, at 0:25:07
Shellie, Do you have panic disorder too? I'm concerned about the depression, but my main concern is regarding the panic attacks. I really only get them when I feel "trapped", so if I am put in the hospital, I'm really trapped. Last time I crashed, my pdoc said to stay home with my husband, because I would tolerate that the best. My husband is extremely supportive, but of course he has never had a panic attack. I used to have a friend here years ago that had them, and we would help each other out. I don't even know if I could come online because they are so bad, I just curl up in the fetal position, take xanax, and sleep so I don't feel like dying. They are a 10 on a scale of 1-10. People think I have really high pain tolerance when I get hurt, but it's really that the panic attacks are sooooo bad, that nothing could ever compare.
The MD doesn't want me to take the xanax either. I guess I could drink alcohol, especially since I'll be off the Nardil. I do know that's a drug too, and I won't sleep as well, but maybe I'll just pass out (under my husband's supervision of course). Exactly how long after you stopped the Nardil did the symptoms get bad? And how long after restart were you able to at least function?
I take 3 tabs twice a day. Last night I didn't take any. This morning I took 2. I won't take any now, and then I was thinking 2 more in the morning. The maybe one a day for a couple days? I figure if I start to go downhill, I'll begin to feel it before I'm all the way off. I don't know what I'll do then, but maybe there's something. I have to get accurate lab results somehow.
This is all worth it, and I know I have to tell myself this over and over. A lot of my problems would be solved if it is Cushing's, but then there are different ones to contend with.
Let me know what you think. Thanks for your help
Jennifer> Hi Jennifer. I went off Nardil several years ago and waited the two weeks or so to try other ad which had come on the market. I had no withdrawal symptoms, nothing physical like people describe going off an ssri. However, the new meds did not work for me and I had to wait again to go on Nardil and then wait for it to take effect. That was really hard. I crashed into a painful depression. I went into the hospital twice during that time; each time for a week. It was not awful to be there--I had been in the hospital for five weeks, three years before and I knew the unit. I knew why I was there and that the Nardil would build up again and it would be okay. But I wasn't able to work during those few weeks, and since I run a business from my home and live alone, it was best to leave. I hesitate to tell you that it was really really hard for me, but I guess I think you need a plan for what action you will take if you get very depressed. (Really, you might not, or experience only mild depression). It's just that having a safe plan (just in case) worked for me, so I wanted to pass that on. I think you are being very brave. shellie
Posted by shellie on June 14, 2000, at 20:26:36
In reply to Re: Scared, but I have to stop all meds! » shellie, posted by Jennifer on June 14, 2000, at 2:05:46
Hi Jennifer. You're on a fairly high dose of nardil if I understand correctly (90mg) so I would take it a little slower maybe.I don't really have panic attacks like you describe. When I get anxious, I tend to dissociate and stop feeling connected to the earth--can't feel myself, etc. Then I do feel the secondary anxiety because I feel scared I'm so spacey. But I do take klonopine on a regular basis.
My depression plays a much bigger part in my life. Sort of like your panic attacks. At the worst (mostly preNardil, or sometimes premenstually) I do the same--curl up in bed and hope to sleep as much as I can. It used to last days for me--in the last few years, never more than a day until January when I started losing some of the effects of nardil. Most of the time I'll wake up feeling better. Do panic attacks run their course in a hour, several hours, or for example, what would be the longest?
It's difficult for me to trace back all the reactions to being off nardil because there were other variables involved. I went off to try other meds--I remember just sleeping much of the time for one of the trials (like three weeks), feeling sick from one, and also moving both my house and business during those months. So mostly I remember being very tired, then very very anxious, then crashing into depression. The first time I tried Nardil it took five weeks for it to help--when I went back on it, it seems like it was a lot shorter. I think we pumped it up pretty high before I lowered it and I think I took serzone with it. I think maybe I couldn't work at all for just a couple of weeks, but I have a lot of control over my schedule and wasn't working full time. I think the nardil will hang around in your system for a while, so by the time you do crash (if you do), it might be time to start on it again. Once I decided to go back on the nardil, it really helped to know it was just a matter of time until it would take effect. So even though I was in pain--I knew it would have an end. And after the nardil kicked in, it was even better, from the effect of being off of it.
I was thinking that if panic is your biggest fear, maybe you could do some alternative treatment like accupuncture or reiki, or something else during the time you're off of medication. Accupuncture did not help me with depression, but some people have had success with accupuncture and panic. My hardest thing was work--actually it still is when I feel depressed. The main thing is that you will get through it, and then it will be over. Just be really kind to yourself--treat yourself to a massage if that helps, hide under the covers, or do whatever you need to to get through it. shellie
Posted by Jennifer on June 15, 2000, at 0:55:16
In reply to Re: Scared, but I have to stop all meds!, posted by shellie on June 14, 2000, at 20:26:36
>
> Shellie, yes I am on 90mg, and I did take 30mg on tuesday am, and I'm going to take 30mg again tonight (wed). I was going to go to 15 tomorrow, but maybe I'll take 15 in the morning and also check with my pdoc since I am able to see him tomorrow. That way I can still take more at bedtime. He's not going to be thrilled that I have to do this.
The panic attacks can vary, mostly because I use the xanax to control them if they break through while on Nardil. When I start feeling that weird flutter in my chest, I take the xanax. Depending on the situation, I can usually tell how much I'll need (ie 1.0mg at home, 2.0mg if I'm trapped somewhere and can't leave) If I don't have xanax with me, they last about 10 minutes, lighten up for a couple, then drive back down hard. I can't function at all. No stimulation by light or sound is best. They won't completely disappear without xanax, unless I can sleep. If it is a bad panic attack session, I can also tell, because the xanax will not make me drowsy at all. I have taken 6mg over 4 hours and been wide awake. Once I wasn't trapped, I went home and fell into a deep sleep and then they were gone. Benadryl has been a helpful emergency drug for helping to sleep, but again, this endocrinologist really wants nothing on board. I think I will look into massage. I usually am able to sleep well when my muscles are relaxed. That was a great idea! As far as my "life" in general, this is probably a very good time to do this. I'm home with my kids, and they are out for the summer. My oldest is 11 and understands what they need to do if I don't feel well. She is really good at keeping her sister quiet, calling dad to let him know what's up, and making sure nobody interrupts my quiet. She has been a godsend. So, I can put things off if needed. Extracurricular activities for the kids can always be missed. The house can be a mess. I don't have any work, homeschool, scouting, or other major things until the end of August. I think that's why I'm thinking that I will get through it, but I know how bad it feels, and I get scared thinking "is this the day they'll start?" Thanks again for all your advice. I should start to notice the decrease on Friday, and may slow it way down if the symptoms start. I'll update as I go. Jennifer
>
> Hi Jennifer. You're on a fairly high dose of nardil if I understand correctly (90mg) so I would take it a little slower maybe.
>
> I don't really have panic attacks like you describe. When I get anxious, I tend to dissociate and stop feeling connected to the earth--can't feel myself, etc. Then I do feel the secondary anxiety because I feel scared I'm so spacey. But I do take klonopine on a regular basis.
>
> My depression plays a much bigger part in my life. Sort of like your panic attacks. At the worst (mostly preNardil, or sometimes premenstually) I do the same--curl up in bed and hope to sleep as much as I can. It used to last days for me--in the last few years, never more than a day until January when I started losing some of the effects of nardil. Most of the time I'll wake up feeling better. Do panic attacks run their course in a hour, several hours, or for example, what would be the longest?
>
> It's difficult for me to trace back all the reactions to being off nardil because there were other variables involved. I went off to try other meds--I remember just sleeping much of the time for one of the trials (like three weeks), feeling sick from one, and also moving both my house and business during those months. So mostly I remember being very tired, then very very anxious, then crashing into depression. The first time I tried Nardil it took five weeks for it to help--when I went back on it, it seems like it was a lot shorter. I think we pumped it up pretty high before I lowered it and I think I took serzone with it. I think maybe I couldn't work at all for just a couple of weeks, but I have a lot of control over my schedule and wasn't working full time. I think the nardil will hang around in your system for a while, so by the time you do crash (if you do), it might be time to start on it again. Once I decided to go back on the nardil, it really helped to know it was just a matter of time until it would take effect. So even though I was in pain--I knew it would have an end. And after the nardil kicked in, it was even better, from the effect of being off of it.
>
> I was thinking that if panic is your biggest fear, maybe you could do some alternative treatment like accupuncture or reiki, or something else during the time you're off of medication. Accupuncture did not help me with depression, but some people have had success with accupuncture and panic. My hardest thing was work--actually it still is when I feel depressed. The main thing is that you will get through it, and then it will be over. Just be really kind to yourself--treat yourself to a massage if that helps, hide under the covers, or do whatever you need to to get through it. shellie
Posted by shar on June 16, 2000, at 0:28:29
In reply to Re: Scared, but I have to stop all meds! » shellie, posted by Jennifer on June 15, 2000, at 0:55:16
> > Jennifer,
I was so scared by the idea of your post (going off meds) I couldn't really read it until now. You are a brave, strong and courageous person.
You seem pretty calm about it, like you know it's for the greater good (the testing sounds excellent and I hope gives you lots of good information). And it's temporary? So, if needed you can go back to your meds after the testing.
I am wishing you an easy transition, much good luck, and quick testing.
S
Posted by Jennifer on June 16, 2000, at 1:36:50
In reply to Scared, but I have to stop all meds!, posted by Jennifer on June 13, 2000, at 2:53:28
It's Thursday, and I haven't taken any Nardil today. Saw the pdoc and he told me I could wean down over a few more days, but if I feel bad, it's just because I need it, not because I didn't go off it slow enough. So, I'm done. Got a bit scared driving 45 min to his office "my trapped feeling - can't turn around" and ended up taking 1mg of xanax. I think I started feeling scared and took the xanax to prove to myself that I can get through this...there's always xanax in my purse if I think I'm going to die. Just knowing that will help me to not need it. Even Charlie Brown's best friend Linus had a security blanket. Better luck, (ok not so good for everyone) I was supposed to take my Girl Scout troop mining tomorrow...talk about trapped! I was getting real nervous, then the phone rang and the miner broke his ribs and can't carry the ore. Had to change to doing some tye-dye art here in town. Yeah! I was of course very sympathetic to his pain, and said we would reschedule this fall (after I'm done with all this!) But at least I don't have to go out of town and supervise them in an overwhelming activity! I had scheduled it before all this other stuff came up.
At any rate, thank you all for your wonderful support. It's so nice to know you are all here if this becomes difficult! Thanks again! Jennifer> I don't know that anyone can really reply to this, but I'm up and feeling scared. Went to a magnificent endocrinologist today at Cedar Sinai Medical Center, after making the rounds with all my other doc's for the last 6 months. I went there because I felt I had Cushing's Disease. She told me out of every 100 that see her, only 1 has it. Well, she did my exam and reviewed my history for 1.5 hrs! She said she was severly suspicious that it was Cushing's, and wondered why nobody else noticed the symptoms...no one ever does when you seem depressed and have panic attacks. At any rate, she needs to do several tests, over a couple months. In order to do them, she needs me to discontinue ALL of my meds. No more Nardil, Aldactone, Xanax, or Pepcid. I'm feeling like this summer is going to be spent in the psych ward. She was very understanding about my reluctance to stop the meds, but I really do want to get to the reason I feel like crap. So I agreed to wean down the Nardil over 4-5 days. The Aldactone is no problem to DC, and I take the xanax infrequently enough that I shouldn't have any withdrawal symptoms. Does anyone have an idea on how fast I can wean down the Nardil and not feel awful? What type of withdrawal symptoms have any of you experienced? The faster I get off, the faster we can diagnose this, and get on with life. Thanks for any advice. Jennifer
This is the end of the thread.
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