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Dr. Bob is Robert Hsiung, MD,
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Posted by UgottaHaveHope on June 1, 2007, at 2:21:17
In reply to Re: question, posted by Phillipa on May 29, 2007, at 10:37:15
It is gone :)
Im at around 210, which I weighed at around college. Everybody says I look too skinny, but thats only bec they dont remember how I looked in the good ol' days.
I feel better, Jan, thats the most important thing. I would've been glad to stay at 252 or even gain 10 lbs if it meant not being ravaged 24/7 by anxiety, which IS the case now after 10 weeks of Nardil. It was a tough 10 weeks, and I'm sure I've got some more bumps ahead, but it was worth it for me. MIRACLE drug.
Posted by UgottaHaveHope on June 1, 2007, at 2:25:11
In reply to Welcome back Michael, fellow Nardilite, posted by stargazer2 on May 29, 2007, at 11:15:53
SG: I am so glad to hear about your improvement on Nardil. Everyone on PBabble is on my prayer list, and I am glad you finally found your way back to Nardil. I hope it continues to help, and just know you can augment it if it starts to fade a bit (it hasn't with me).
I totally RELATE to you on the insomnia and daytime sedation, although the insomnia has gotten a little better at 10 weeks. I dont know what to do about daytime sedation, other than drink caffeine.
Will e ya soon, Michael
Posted by UgottaHaveHope on June 1, 2007, at 2:26:39
In reply to Re: I'M BACK ... and 37 lbs. lighter on NARDIL, posted by Johann on May 29, 2007, at 13:52:17
Johann, I didn't re-join bec I couldnt figure out what was going on with this website, but I did see the message asking about me. That was very kind of you and made my day.
Please update me on you. Michael
Posted by UgottaHaveHope on June 1, 2007, at 2:29:27
In reply to stargazer, posted by brooke484 on May 29, 2007, at 20:11:45
And if you live in the US, thats all there is, unless you get permission to order from overseas.
The general consensus seems to be that you have to take a little more of the New Nardil (45-60mg) to equal Old Nardil (30-45). But every med affects everyone differently.
Michael
Posted by UgottaHaveHope on June 1, 2007, at 2:37:53
In reply to Re: I'M BACK ... and 37 lbs. lighter on NARDIL » UgottaHaveHope, posted by FredPotter on May 30, 2007, at 18:05:04
I just didn't want to GAIN A LOT of weight, which is the favorite (but obviously always not true) topic of some in here. I would've been happy staying at 252 or even gaining 10 lbs. if I felt like I do now (which is NOT being ravaged by anxiety 24/7).
Losing the weight was just an added bonus. I think it came from eating fruit for breakfast, fiber most of the time for lunch, and an almost complete avoidance of fried foods. Plus I eat what I like, but less of it.
I am NOT surprised that 45 has worked for me so far. NOT AT ALL. The 1mg per 1kg of body weight is just a scientific theory and a good suggestion. But every med affects everyone differently. For some ppl heavier than me, 15mg may be enough. Everyone is different.
Glad to hear you are doing better. I've been wondering. Oh yeah, where are your jokes and humor? I miss that :) Michaek
Posted by stargazer2 on June 1, 2007, at 7:31:05
In reply to Nardites UNITE » stargazer2, posted by UgottaHaveHope on June 1, 2007, at 2:25:11
Michael, lets see where I'm at this week...
My brain is focusing and organizing daily activities better and I'm starting to get bored, but not depressed, although sometimes the distinction is murky.
I have cut back on a few days from 45mg to 30mg with less daytime sedation but yesterday I took a 2.5 hour nap which gave me lots of energy and I slept pretty good last night. I take the last dose before going to bed. I am trying to avoid more medication by changing the schedule of when I take the meds, so I'm in an experimentation mode now.
Have you ever taken 30 mg at once or do you space out the 15 mg over the course of the day? When do you take the last dose?
I did have a horrible side effect when I started and I wasn't sure it was related to Nardil but it was. The medical term is flatus, aka gas, and the only thing that is helping is taking a product which adds fiber to my diet. So far it's helping, but not totally resolved. One poster, a few years ago, also had this SE.
The rest of the side effects are minimal, compared to the suffering and worthlessness I have felt for over a year. I had to persist in getting Nardil precribed (you know), although I'm not sure why there is so much reluctance when I have a medical background and know all about the side effects, and the diet and check my BP when required. The diet was harder after not being on a MAO for many years, but the sacrifices I am making are more than made up with the positives of the drug.
Doctors have to stop doing this to us. I lost many years of my life and resent that I was forgotten in the equation, because of a doctor's reluctance to prescribe a MAO. How may others out there are still suffering and perhaps dying because of this practice????? MAO's can't be the first line of treatment, but years of worthlessness is more dangerous than the side effects of the MAO's. My opinion and life, but so many wasted years trying to work with anhedonia and feelings of worthlessness is really no way to live.
Have the patient sign a waiver if the drug is so dangerous, it should be our informed consent to decide how much risk we want take in life with any medical treatment. Isn't ECT more dangerous than a MAO? I believe it is, although I came close to having it done once when I was so far gone. I was just too fearful of it and I feel the MAO's are less risky with careful monitoring of them for select patients that can follow dietary and medical orders carefully.
I feel it is imperative for MAO's to be tried for those patients stuck for years (even a few bad months) in a truly horrible depression (anxiety) before ECT or another invasive oprocedure like VNS is used. Those seem more dangerous and costly to me.
Who agrees with this assessment? It seems clear to me from this side of the abyss.
Stargazer
Posted by UgottaHaveHope on June 1, 2007, at 9:53:17
In reply to MAO's, Nardil should be used B4 other Rx's, posted by stargazer2 on June 1, 2007, at 7:31:05
SG, Or let me rephrase that: Everyone that I have talked to that takes Nardil has had and continues to have episodes of "bad gas", but it is such a minor, minor thing compared to the other side effects (at least to me) that I dont even bother mentioning it.
SG, you have probably forgotten more than I will ever know about meds, but I dont think you should be too concerned right now about daytime sedation or insomnia or afternoon naps, etc. The only thing that matters (at least in my opinion) is making it to the 8-10 week point, where you can truly get an accurate assessment on how Nardil will work for you. Then you can start making adjustments, and yes, taking it in combined doses or at different times of the day is the way to combat daytime sedation and insomnia.
Im sure that is what I will be working on when I meet with my pdoc next week (time and dosage of my 45mg/day). Unfortunately, I havent done that much to help my sedation/insomnia bec 1) dont take pills same time each day and 2) have bad sleep routine.
BUT, I am in complete AMAZEMENT with how much better I feel. Nardil is a miracle for me, but it's not perfect. It has some brutal side effects in startup, most that will lessen or completely go away in time. But it's worth the tradeoff for me, anything to NOT feel ravaged by anxiety 24/7.
Posted by brooke484 on June 1, 2007, at 13:07:40
In reply to Re: Blackouts greatly reduced after 8 weeks » brooke484, posted by UgottaHaveHope on June 1, 2007, at 2:16:19
When I took Nardil back in 1996 I never experienced this dizzy/lightheaded feeling that I have now and I went up to 60 mgs. In fact, I didn't have any side effects at all, so I'm kind of bummed that I'm experiencing them this time. I bought some salt tablets and I suppose I should get a blood pressure monitor. I can live with it though if it means I'll feel better in time. Nardil is kind of the last resort unless there are some new wonder drugs coming out in the near future.
Thanks again and glad you're doing well. It gives people hope!
brooke
Posted by UgottaHaveHope on June 2, 2007, at 3:19:40
In reply to Re: Blackouts, posted by brooke484 on June 1, 2007, at 13:07:40
Thats a mistaken belief. If you go to a pdoc who really knows what he or she is doing (especially one with a research background at a university), Nardil could be the first line of treatment (as is Emsam, the MAOI patch), or more likely the second line of treatment.
MAOIs have been around for 50 years because THEY WORK. They just dont provide the same profit margin as all of the new SSRIs, therefore they are not pushed and marketed by the drug reps onto the doctors.
Posted by stargazer2 on June 2, 2007, at 16:48:05
In reply to I'm thinking everyone has flatuence on Nardil .... » stargazer2, posted by UgottaHaveHope on June 1, 2007, at 9:53:17
Today I woke up with a new side effect of Nardil: swollen ankles. It is quite pronounced on both my external and internal malleolus (ankles). This was not present in the first few weeks of Nardil, so it is a later effect but obviously I'm concerned because it is quite obvious and I'm wondering if it is caused by a touch of CHF (congestive heart failure) Anyone else with this side effect and if so, what was done to relieve the swelling other than telling you to elevate your legs as much as possible. Was Lasix ever prescribed for this or another diuretic? Perhaps a natural diuretic since I tend to have low BP and a diuretic may cause my BP to drop further...
My ankles were never thin to begin with, so now they really are prominent and they ache.Stargazer
Posted by Phillipa on June 2, 2007, at 19:39:06
In reply to Nardil, new side effect; swollen ankles, posted by stargazer2 on June 2, 2007, at 16:48:05
Stargazer I know another poster who had to give up EMSAM because of swelling. Did you call your doc? Don't want to see you fail. Love Phillipa
Posted by lymom3 on June 2, 2007, at 20:51:38
In reply to Nardil, new side effect; swollen ankles, posted by stargazer2 on June 2, 2007, at 16:48:05
While I've not been on Nardil, I did take Emsam. Same result as you. Although I was feeling better after several weeks the swelling set in. First the doc wanted me to wear support hose; then they tried a diuretic. Never did get any relief from the swelling but what did me in with the Emsam was the insomnia. I could not sleep no matter what I tried with that. When I quit the Emsam the swelling went away.
Believe me I had tons of tests and they did not find anything wrong with me.
Best wishes to you,
Lisa
Posted by stargazer2 on June 2, 2007, at 20:59:49
In reply to Re: Nardil, new side effect; swollen ankles » stargazer2, posted by Phillipa on June 2, 2007, at 19:39:06
Phillipa,havent't called my pdoc yet, actually haven't even thought of that. I just noticed it this morning and had to go out all day so haven't done anything yet but look at them and push and try and make those indentations that prove you have swelling. Bummer, I better not have to stop it because of that, I'd be pretty upset, I have never had "true" physical side effect of a med before. Figures the only one to work in 10 years does this. That is cruel!
We'll see overthe next few days what things look like before I call the doc. What can he do??? I'm not ready to stop the Nardil yet. I may research natural diuretics on line.
Stargazer
Posted by stargazer2 on June 2, 2007, at 21:18:29
In reply to Re: Nardil, new side effect; swollen ankles » stargazer2, posted by lymom3 on June 2, 2007, at 20:51:38
Lisa, Did you give up on all meds or what did you try next? Unfortunately,Emsam did not work anywhere as well as Nardil so I'm really bummed by this. I never had this SE before, so why now. I took Nardil 20 years ago and didn't have it. Probably Pfizer's messing with the formula. Why can't these drug companies leave well enough alone? Roche stopped making Marplan in 1994 and I was on it and was left high and dry to try every SSRI's over the next 10 years.
The big drug companies are always messing with things and disregard how they tamper with our lives. They don't see things like this of course, their only concern is will it sell and how much money will be made from it. Greed and profits should not determine what drugs are produced, but it does, so don't get too confortable on any meds since they might be discontinued without any warning. It happened to me twice with Nardil and Marplan, the only two drugs that really were effective for me.
It sucks to be depressed and dependent on meds that might work, work for an indefinate period of time, or never work. Life has been one runaround since 1987, the year I first tried a med for depression. Twenty years of uncertainty is no way to live, but what is the alternative, give up. I want to live but only wihtout depression. This has been a long, frustrating course and now with one side effect I feel another chance may be taken away from me, that is too much to go through again.
Stargazer
Posted by Phillipa on June 2, 2007, at 21:33:12
In reply to Re: Nardil, new side effect; swollen ankles/Philli, posted by stargazer2 on June 2, 2007, at 20:59:49
Stargazer when I was younger I had an OB-GYN who gave me B6 for PMS it reduced the bloat so maybe B6? Can't hurt water soluble b vitamin? Love Jan
Posted by lymom3 on June 2, 2007, at 22:04:03
In reply to Re: Nardil, new side effect; swollen ankles/Lymom3, posted by stargazer2 on June 2, 2007, at 21:18:29
After the Emsam they tried me on just mood stabilizers then some anti psychotics some anti seizure medications. Then the bottom fell out. I found out that my middle son is a drug addict. He went to rehab and I went nuts. I've never been suicidal ever before. I had been on Lexapro before and it had worked for me twice before. I have tried Paxil, Zoloft, Effexor XR, Wellbutrin, Cymbalta, Remeron, Tofranil, Pamelor and Serzone.
Those are the ones that fall into the anti depressant category. Won't even continue the list of the others. So it is so hard for me to think about mixing stuff up again. I just need so badly to feel peppy, perky, alive...whatever you want to call it. I would really like to care that my house is a mess or that I need to color my hair. Maybe that sounds silly. I go to work, get my work done, feed my kids, do my laundry...all the stuff that "should" get done.
It would be nice to want to go to dinner or a movie with my husband; take my kids to the zoo, plan a vacation and look forward to it. The stuff that normal people take for granted. I haven't given up trying to find the magic combination but it has eluded me for dozens of years so far...
Posted by gardenergirl on June 3, 2007, at 0:18:52
In reply to Re: Nardil, new side effect; swollen ankles/Philli, posted by stargazer2 on June 2, 2007, at 20:59:49
I've had swelling in my lower extremities with Nardil. It only occurs at 60 mg and higher doses. My GP prescribed Lasix, and I took that occasionally when the swelling was worst, though they never really reached the achy stage. Lasix was somewhat helpful.
For me, anytime I went to 60 mg or higher, I would get urinary retention and edema. It was annoying more than anything. I've been at 60 mg for quite some time now, and I only seem to swell now during my period or if I take an NSAID. I don't know if these side effects just eventually went away or if Lithium has anything to do with it since Lithium can increase urination. I haven't taken a Lasix in over a year. Actually, I don't know that I can anymore with Lithium.
I had the same worry as you about CHF. I'm overweight and out of shape, so I worry about health problems due to weight anyway. But I never had any other cardiac or respiratory symptoms accompany the swelling, so I think it's more of a kidney or urinary problem. But I'm only speculating. I've not had anyone explain the physiology of urinary retention with Nardil to me.
I hope you find some relief. Putting your legs up whenever you can and definitely a least once a day for 20-30 minutes or more is helpful. I would lie down with my butt up to the wall and my legs up against the wall to really really elevate them. Retrograde massage is also helpful (long strokes moving from the foot, up the leg towards the heart only, not back down). There are certain essential oils which are reported to increase circulation and "detox", and using a massage oil or lotion with them mixed in is another trick I've tried with some success. Epsom salt baths help. When you are sitting, doing ankle pumps is pretty easy (flexing the foot forward and back).
Hope this helps,
gg
Posted by stargazer2 on June 3, 2007, at 6:15:59
In reply to Re: Nardil, new side effect; swollen ankles/Philli » stargazer2, posted by Phillipa on June 2, 2007, at 21:33:12
Thanks Phillipa, I'll try the B vitamins.
Posted by stargazer2 on June 3, 2007, at 6:26:00
In reply to Re: Nardil, new side effect; swollen ankles/Lymom3 » stargazer2, posted by lymom3 on June 2, 2007, at 22:04:03
Lisa, I know what you mean by just wanting to do "normal" things like everyone else. I went out the other night with casual "friend" and I was so tired, she kept making comments about it. And this is someone that travels for work, has kids, lots of extra responsibilities and she says to me "you look flat", this my life on Nardil every afternoon. I was so pissed off for her to say that. Why can't super type-A achievers just understand some of us don't function in that high drive mode like them. She's someone I've told about my depression and wish I hadn't. Now I find she is always looking at me to determine what is going on with me. And I really felt judged and since she's not a good friend, I'm sorry I ever said anything to her in a moment of weakness. Being judged is a terrible thing especially with depression since you're never sure if your up or down and lots of times just "faking" it is the status quo. I want to have days where I forget i have this illness and just enjoy life.
I hope Nardil really is working, I can put up with the swollen ankles unless they get really bad and affect my walking or if I have pain. I'm going to look into vitamins and other natural approaches before more medication.
Thanks for your respponse. WE are allin this together, so it's a help.
Stargazer
Posted by stargazer2 on June 3, 2007, at 6:37:23
In reply to Re: Nardil, new side effect; swollen ankles/Philli » stargazer2, posted by gardenergirl on June 3, 2007, at 0:18:52
GG, are you taking Lithium and Nardil now? Why was Lithium added?
I'm on 45 mg so I got the ankle swelling before the 60 mg you had it at. I'm going to try some natural rememdies like vitamins and other suggestions I hear of. The ankle exercises I've been doing. Last night my abdomen also looked swollen and I hadn't weighed myself so I don't know how much, if any, weight I've gained since I started Nardil. I guess weighing oneself before starting any medication is the only way(weigh) to know it's affect on weight. No AD's have given me this side effect beforeandwhen I saw my ankles, or lack thereof, I said, Oh no, here we go again, so it was quite a surprise. I have no other medical issues that lead me to believe it's anything more than a water imbalence and I need to figure out how to reduce it in the most natural way, like vitamins, herbs or something to that effect. I'll let you know if I find anything to help me. I have to be careful with diuresis as I also have hypotension and with Nardil's reduction on BP, any additional reduction due to increased urination could be problematic.
Thanks for all your advice......Stargazer
Posted by gardenergirl on June 3, 2007, at 16:07:40
In reply to Re: Nardil, new side effect; swollen ankles/GG, posted by stargazer2 on June 3, 2007, at 6:37:23
My new pdoc added lithium to augment. Nardil just wasn't getting all the depression, but going higher than 67.5 mg was intolerable for me as it gave me severe insomnia and akathisia. It's been a godsend. I've finally hit the depression-free mark, though I've had a couple brief episodes that were manageable.
I think you're wise to go with natural remedies first. I was actually surprised my GP gave me Lasix, and I usually didn't take it more than a time or two a month. That prescription lasted forever, and I don't know that it was really worth it. And given your hypotension, you're right, it would be more risk than probably benefit.
So you're not getting urinary retention?
Take care,
gg
Posted by stargazer2 on June 3, 2007, at 17:52:49
In reply to Re: Nardil, new side effect; swollen ankles/GG » stargazer2, posted by gardenergirl on June 3, 2007, at 16:07:40
GG, No urinary retention as far as I can tell, just puffy ankles, which are not very attractive but I think I can live with that if I can manage it with some concervative measure which I'm looking into.
It's good to know that Lithium can be added to Nardil for augmentation if Nardil needs a boost. What is the dose of lithium and know Lithium can have effects on the kidneys so you have to be careful with watching the renal functions (BUN, creatinine). Has this been recommended for you at baseline or at intervals while you are on Li?
I knew several people who suffered kidney damage as a result of being on lithium, although I'm not sure what dose they were on.
Stargazer
Posted by gardenergirl on June 3, 2007, at 21:34:47
In reply to Re: Nardil, new side effect; swollen ankles/GG, posted by stargazer2 on June 3, 2007, at 17:52:49
I take an average of 450 mg lithium. I was prescribed 600 mg (2 300 mg capsules), but at that dose I would get this internal shaking sensation that was intolerable. It felt somewhat like low blood sugar shakes. I think it might be related in some way to dehydration or electrolyte problems. So now I take two capsules one night (600 mg) and one the next (300 mg) alternating. That is odd I know, but it seems to do it.
I don't know that I've had kidney labs done. I tend to get the basics every year, including liver function. I think maybe that BUN and creatin are included. I'm due again late summer, so I'll keep an eye on that. I also have had lithium levels drawn once. Since I'm on a pretty low dose, my pdoc doesn't think I need to have them all that often, probably every six months.
gg
Posted by Phillipa on June 3, 2007, at 21:52:00
In reply to Re: Nardil, new side effect; swollen ankles/GG » stargazer2, posted by gardenergirl on June 3, 2007, at 21:34:47
GG Bun and creatinine are included in the standard electrolyte test so I'm sure you getting them checked. Love Phillipa
Posted by gardenergirl on June 4, 2007, at 1:51:53
In reply to Re: Nardil, new side effect; swollen ankles/GG » gardenergirl, posted by Phillipa on June 3, 2007, at 21:52:00
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