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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 SBOATRN on March 31, 2003, at 10:13:42
I wanted to ask a few questions about your use of Benzo's. I take it Klonopin was the one ?? I wonder how you came to the time of wanting to stop the use of it. Was it DECREASING the quality of your life ? I struggled a long time with using or not using a benzo. I was well informed of the pitfalls by my Dr. and it was a last resort for me. Researched it myself, also. My quality of life improved ten fold and that continues. I have never increased dosing in a year's use and have decreased to a range of .125mg - .375 mg per day... much below what most consider therapeudic, but works for me. I may have the dependence issue, but the benefits have been great for me. I am wondering, if something is working, why change a good thing ?? I'm not trying to argue or anything, I am just really curious about the issues you had with this and why you don't want to use it at all ??? Your response would be appreciated.
Posted by bretbe on April 1, 2003, at 10:20:04
In reply to To bretbe - Questions ??, posted by SBOATRN on March 31, 2003, at 10:13:42
Hi There!
Yes, it is Klonopin which have taken now for almost 10 years. It originally given to me in the psych ward (I slit my wrist) to help me sleep and help with the anxiety. It took the edge off at the time but no real significant benefits other than sleep. The reason I wanted to try to get off was because I didn't feel like it was helping me and I worried that my brain had just adjusted to having it in my system. I don't like feeling I HAVE to take something if it isn't helping. I tried going off myself a few times cutting down to .5 mg giving me weird sensations in my head which were kind of cool in way but quickly giving way to extreme dysphoria, mental pain, irritability, etc. I suppose you could argue that it proves it was helping but it actually felt like going off Klonipin was even worse than my original symptoms...although, come to think of it, I never thought it was possible to feel worse and still be alive. Anyway, in researching benzos on the Internet, I found a number of reports, especially in the UK, about this dependence issue with benzos especially Klonopin which has, perhaps, been over prescribed in the past. Supposedly, it is especially the last few micrograms that are the hardest to get off of. I also read theories about its possible negative impact on short-term memory. Yes, I know, there are all kinds of conspiracy theories out there and a segment of the population just anti-medication so one cannot always believe what one reads. Still, I didn't like being dependent on it if it wasn't really helping. I also thought it interesting that my withdrawel symptoms felt like aggravations of my original symptoms. Again, you could argue this means Klonipin is helping but you must understand that after 15 years of this horrible illness (dysphoria, mental pain, anguish, etc.) I'm vigilant about any clues that might better help me in the direction of a medication that will work significantly. In 15 years, I have been on dozens of medications with no benefit. So, since benzos work on the gabba system (in theory), I've been trying Depakote which supposedly augments the gabba system too. I had a good response initially but now spiraled back to Hell.
So, in short :-) (sorry for such a long message), I am now taking the position you argued for and that is simply to accept I am on Klonopin for life...why fight it anymore? Thanks for your input and your question!
Posted by SBOATRN on April 1, 2003, at 13:24:49
In reply to Re: To bretbe - Questions ??, posted by bretbe on April 1, 2003, at 10:20:04
Dear bretbe,
Thank you for taking the time to answer my questions. I appreciate your honest answers. Sounds as if times have been really tough for you from time to time. I argue within myself alot over the use of Klonopin and meds in general. Klonopin is the only thing I use right now. I think it's a decision a number of us tumble with. There are no clear cut answers, in my opinion. Everyone has to do what is right for them. I don't put down anyone's opinion, but I will say the UK site messed me up alot in the initial stages of using Klonopin. It convinced me (well, I made the decision based on their information) to get off after 3 weeks use. That was a mistake. Dependent at 3 weeks of use - prehaps. Ill at three weeks and before - for sure.
I don't know what the future holds for me discontinuing or remaining useage. That, right now, is still the future. I hope to work those issues out. I guess I would hope to be med free, but realize that may not be possible. I hope you work to a good resolution for yourself, too. Again, thank you for your honesty. You were relaying your experience and that's what we are here to do and in that spirit - help each other...... that is the reason I wanted to know more from you. My best wishes to you.
S.B. RN
Posted by bretbe on April 2, 2003, at 17:48:53
In reply to Thanks, posted by SBOATRN on April 1, 2003, at 13:24:49
SB RN (you're a nurse?) Thanks for your feedback and concern! I'm curious about the symptoms for which you take Klonipin. I don't think I've ever met anyone with quite the same set of symptoms I have. I hear similar words used for depression and anxiety but they seem to have different meanings for others in how they elaborate on their subjective feelings. However, since I started back on my full dose of 1 mg./day Klonopin (I had painfully cut back from 1mg to .5mg over the course of a year), the most severe aspects of my illness have diminished to a less intense level, i.e., the miserable dyshporia, anxiety, guilt, dispair, doom-gloom, life is insurmountable burden, I'll never be able to pull it off, can't wait until I die, etc. feelings.
The truth is my "pain" or illness (TRD/anxiety/BP NOS-->no mania) has never EVER subsided (NOT a "from time-to-time" phenomenon); I just endure endlessly which is what makes it so torturous...if I could just get a break even occasionally! It just seems I have periods of being able to better function, or cope, DESPITE how I feel inside; I always LOOK normal; just feel Hellish inside. I'd just love to feel "normal" for just a few moments but after 15 years, I only have vague memories of what that was like...I just remember that living wasn't so constantly painful (e.g., I could relax on the sofa and feel good, relaxed) and I didn't constantly look forward to death. Even vacations have been painful with this illness sometimes even a reminder of how sick I am compared to normal...I don't enjoy them other than they are less painful than having to work on top of my mental pain. I have plenty of energy but I am especially susceptable to extreme anxiety from normal stressors.
Anyway, I too am currently only taking Klonopin as all other meds have failed. Having now taken less Klonopin and now taking my old dosage, whether it is dependance or helping, I feel less profoundly miserable taking the full dose; I hate accepting degrees of misery...I'd rather find a full remission but I've never, not even for one day, had such; well, I did once try getting stone drunk (I'm not usually a drinker) and I got a huge smile on my face because it was the first time I felt pain-free in my head. It was sort of sickly reassuring that something is genuinely wrong with my brain and not everyone feels as crappy as me all the time; that's why they don't look forward to the day they die like I do.
Ok, sorry to ramble but thanks again for your words and hey, if Klonopin is working for you, I'd stay on it too especially after the little "experiment" I've had this year in trying to get off it. I guess I at least proved it does something for me. I really ought to think about getting better before worrying about getting off medications. Like I've often thought, I'd take any side-effect if I could just feel better!
Best wishes!
Posted by SBOATRN on April 2, 2003, at 20:17:11
In reply to Re: Thanks, posted by bretbe on April 2, 2003, at 17:48:53
Oh my dear bretbe, I am so very sorry for all you troubles and how you feel. I have got to believe there is something out there that will help you. Mine is an Anxiety Disorder with Panic. Initially, the doc did try to think it was a mixed anxiety depression thing. We tried SSRI’s times two – couldn’t take ‘em. The side effects were horrible and my physical health suffered. I actually had my first panic attack while on Paxil.(Lucky me) I have a great Dr. and he decided we would try treating the anxiety and go from there. Tried Buspar – yet another nightmare. We decided on Klonopin. Worked great, but as I told you before, I got all caught up with “IT’S THE DEVIL DRUG” and stopped it after 3 weeks. Got REALLY sick after that little adventure. So, I take the low dose and some extra things like Remifemin, Vit E, and Calcium, magnesium, zinc combo and it keeps me good most of the time.
My illness was very situational. Came during a really high stress time and a nest being empty (I’m 43 and had my daughter at an early age for most standards). My symptoms tend to be really physical – a lot of neck tension with pain and real physical stuff like the pounding heart and feeling weird prickly skin feelings. The panic attacks are just a real intense version of the above symptoms. I can relate to the overall crappy feelings. But, almost more that in my mind, it feels more body related. Mine would subside at times and wane, but always seemed to be under the surface. I did have some agoraphobia and still do at rare times. It’s more a feeling of FEARING feeling physically bad while out. I do go through times of a lack of motivation and drive. That really has gotten better. I just need a kick in the a** sometimes !!!
I think we are really hard on ourselves and put a lot of pressure to feel what we perceive as “normal”. I know I think I’m the only one who isn’t having a great life. It’s simply not true and many, many struggle everyday..
I know the pain of your illness is so difficult. I know many that suffer so much. I really wish we could figure out better treatment for all this crap. I wish we didn’t have to have boards like this. The mind is just too complex!
I really hope you can find something that works. Therapy helped me some. I’m the “self help”queen, too … for what that’s worth, I do think some of the stuff I do has helped. The Klonopin has been a Godsend for me. I do wrestle with the issues of its use. I actually can skip a dose and don’t miss it. My Dr. says I really probably don’t take enough of it for it to be making me ok, but who knows ?
I do know I will probably struggle with the anxiety problem from time to time for the rest of my life. I don’t want to accept that, but I do. I am grateful that I do have something that helps me.
Have you tried EVERYTHING…… some old and new ?? I know it’s not a great thing to have to trial and trial, but neither is living miserable, either. I really wish you the best.Sorry for the long post. I never had a problem talking… ha, ha !!
Let me know how you are from time to time. I’ll even give you an Email address, if you care to use it.
sage_526@hotmail.com
Posted by SBOATRN on April 2, 2003, at 21:00:26
In reply to To bretbe... , posted by SBOATRN on April 2, 2003, at 20:17:11
I found this article to really help me. It's more addressed to Panic Disorder, but I think it's relevent when a Benzo helps....
I hope I get the address right ...here goes:
Posted by bretbe on April 3, 2003, at 10:25:46
In reply to P.S. , posted by SBOATRN on April 2, 2003, at 21:00:26
Thanks again SB! Sorry to hear you suffer as well, but glad you get some help with the Benzo. Yes, I've long realized there are many people on this planet suffering from all kinds of both common and obscure diseases, syndromes, life situations, etc. in addition to mental illnesses. In fact, I wonder if "normal" is actually abnormal but it just seems a lot more people are having a much better time, or at least "tolerable" enough that don't look forward to death. I don't ask "why me?" because "why not me?...I'm not so special", i.e., someone has to be the person suffering. Still, it doesn't give me any comfort knowing there are millions of others suffering too...it just makes me more cynical.
For me, I've come to believe that I have at least two distinct disorders; one being a bad case of generalized anxiety disorder (GAD) and one being a depressive disorder not really understood by anyone. Unfortunately there is not near the amount of medical help for treating ongoing anxiety as there is depression. And, I'm starting to think the real driver of my illness is my ongoing anxiety which activates the depression, especially after my experiment with Klonopin. I don't have the panic attacks or even any somatic results of anxiety (e.g., no fluttering feeling, no clammy hands, heart dysrythmia, and my blood pressure is actually on the low side), rather, it's all shoved up into my head. I have had massages in which my body is totally relaxed, yet my brain is so wound up, I get no benefit from it...as if a complete disconnect between my brain and body. But when life events would be stressful for a normal person, my anxiety and depression sky-rocket and desire for ending my life greatly increases. I seem to be unusually susceptible to stressors that others might find difficult but nothing to kill themselves over. So clearly, life events play a role and the anxiety seems to creep up from within me, as if I have not control over it, rather than anything I "think" about the situtation (e.g., Cognitive Behavioral techniques have been inneffective).
Like you, I have also had aweful experiences on similar meds as you, i.e., Welbutrin, Buspar, and other SSRI's. I thought my head would explode on Welbutrin; not from any real physical effect (e.g., not a hypertensive crisis) but the subjective feeling my head would burst from the intense mental pain.
Also, my depression is not the "leaden" kind (no energy, can't go to bathroom, etc.) rather, I usually have plenty of energy, except when meds sedate me, but the feeling is as I've described before of high dysphoria, mental pain, anguish, etc. Hopelessness feels like a natural conclusion to my situation more than being driven by some irrational feeling or thought. Wanting to die also feels more like a logical conclusion because of the overwhelming feelings of pain and misery. You know, I have had so much hope offered by therapists (e.g., "If I just get in touch with my inner child") and psychiatrists (e.g., "the new medication will do the trick"), only to then be disappointed yet again and reinforcing that nobody really understands this thing and there doesn't seem to be anything that helps. It just makes sense the life holds no potential for me to live normally again. In fact, if feels as if the cowardly thing to do is to keep living; to keep subjecting myself to such misery when the "brave" thing would be to end it. I'm not saying that's how it should be, but it "feels" that way as a natural conclusion to the years of pain, lack of help, and apperhently no help in sight. I'm not a wuss either, I've endured and endured throughout this illness, functioning on the outside as if everything is ok, still managing to finish grad school and work professionally (although now I'm layed off which is causing additional anxiety). All the while holding inside this "secret" misery because I don't want others to see how screwed up I am, or feel, inside...this freakishly aweful pain.
Anyway, since you asked, here are the meds I've been on and although there are a lot, I suppose there are still more to try but not really any new "classes" as far as I understand. And, since I had such a bad "trip" on Welbutrin and other dopamine enhancers, it makes me think any new meds for dopamine would just activate my anxiety and blow up my head again. Here they are:
Prozac & Zanax
Imipramine & Valium
Pamelor (Nortryptaline)
Welbutrin
Prozac at higher doses
Lithium
Desyrel
Buspar
Effexor
Prozac at lower doses & Desyrel
Amatryptaline
Paxil
Nardil (MAOI)
Mellaril (anti-psychotic)
ECT
Mellaril & Depakote & Klonopin (Clonazepam)
Luvox & Mellaril & Clonazepam
Clonazepam only
Serzone & Clonazapam
Ritalin (Amphetamine) & Clonazepam
Luvox at higher levels & Clonazepam
Remeron (SSRI/NARI) & Clonazepam
Tegretol & Clonazepam
Lamictal & Clonazepam
Depakote & ClonazepamThe latest psychiatrist's idea is that since treating my illness as unipolar depression didn't work, why not approach it like a bipolar, even though I don't have any mania. I have a creative background, so it could be loosely described as hypomanic I suppose, but I don't find the experience pleasureable or more miserable...the pain is pretty constant exept during periods of higher stress when it gets even worse. That's why I'm now suspecting my illness is perhaps most attributed to an anxiety disorder...since none of the unipolar or bipolar meds have worked and the Klonopin is the only thing that makes a dent in it, at least when there is a minimal amount of stress in my life (I am very hyper-reactive to normal stressors).
Okay, got to stop here. Sorry to talk your ears off. Thanks again for the info on panic! I genuinely wish you the best, God knows there are enough people suffering on this planet. Here I have been talking about me, me, me...I hope you're doing okay these days. Again, I feel bad for talking down about Klonopin; clearly it's a life-saver for many so I wouldn't mess with it if I were you. And I know doctors are skeptical about low doses...probably making you feel like a hypocondriac or typical empty nest syndromer or something, but I know for a fact now that even a relatively small amount of Klonopin can make a big difference.
Best wishes!
Feel free to email me as well: bretbe@excite.com
Posted by Viridis on April 3, 2003, at 22:01:32
In reply to Anxiety causing Depression? SBOATRN, posted by bretbe on April 3, 2003, at 10:25:46
Hi Bretbe,
I can relate to that -- I experience episodes of extremely agitated depression during which it's almost impossible to sleep or eat, and I worry obsessively about problems that at other times I might just shrug off. I've always been this way, but since starting Klonopin a couple of years ago at a low dose (1 mg/day), I just don't get into that state of mind any more. I also use Xanax occasionally, if things are really stressful. For me, small amounts of benzos make a huge difference.
I also experience another "kind" of depression, less focused and more hopeless-feeling. It isn't nearly as bad as the anxiety-based depression, and comes and goes even when I'm on benzos. A small dose of Adderall (actually prescribed for ADD) really helps with this. The Klonopin-Adderall mix is very good for me. I also take Neurontin, which doesn't seem to do much, but my pdoc thinks it may help with stability. It has no side effects for me.
BTW, I had a terrible time with Wellbutrin and SSRIs. I haven't tried Ritalin; my pdoc and I discussed it, but he predicted that it would be too "harsh" for me, whereas he guessed that Adderall would be a better fit (and it's worked very well). So, just maybe, a trial of low-dose Adderall with Klonopin would be worth it for you. I also did quite well with Provigil (Modafinil) plus Klonopin; it was energizing yet not anxiety-provoking, just didn't help enough with concentration. Several people here find it has good antidepressant effects, and I'd certainly use it again.
These are just some ideas, since your situation sounds similar to mine. There's a very high probability that some combo will prove effective; the trial and error is just so frustrating, but worth it when you finally find the right treatment. Good luck!
Posted by bretbe on April 4, 2003, at 17:05:36
In reply to Re: Anxiety causing Depression? SBOATRN » bretbe, posted by Viridis on April 3, 2003, at 22:01:32
Thanks! You gave me some ideas I hadn't considered before. I had never heard of Provigil (Modafinil) and I hadn't considered Adderall since it is an AD/HD med. At this point, creativity is definately needed in finding better options for treating my illness.
This is the end of the thread.
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