I will ask the question about clonazepam. I have what I consider anxiety attacks but electrophysilogist says they aren't classic panic attacks but wired up nervous system from ANS.
My primary care gave this med to me a couple years ago but I have been afraid to use it since its addictive Also he only gave me three of them prescribed as follows-take 1 tab 3x a day as needed. Hence a one day supply. I was afraid to even start them because if they work and give some relief it would be terrible if that's all he gave.
Anyway do others use this med and do u find it beneficial and worth the risk? I see him this week and if anybody can give me their thoughts I may bring this up with him again. My anxiety is terrible but I deal with it. I can't take ssris and that type of stuff as its deadly to me. Learned that the hard way.
I was given this drug some years ago. I felt it made me feel a dark depression and stopped it. You might ask the doctor about librium. It's an anti-anxiety tranquilizer that's been around for a lot of years. If taken regularly and then discontinued, I think I remember reading a person could get rebound tachycardia. I take it occasionally in a low 5 mg dose and have found benefit from it.
Just in case my above post was clear as mud- I was given clonazepam some years ago. When I took clonazepam, I felt a dark depression descend on me which was truly awful, so I discontinued it. Librium generic is what I use currently on an occasional basis at 5 mg level & find it beneficial.
Yes, it is and it's not horribly expensive either because it is so old of a drug. I'm leery of newer drugs anymore... just look at all the lawsuits! I took librium at a higher dose daily for a short while, and I felt depression come out, but not as dark as I felt with clonazepam. Maybe not everybody gets that side effect, but it was awful with the clonazepam for me.
Thank you. I don't even know if its worth taking anything. It's just the anxious feeling and trembling etc is really wearing me out anymore. It seems to be worse with overstimulation like lights in stores that are bright and noise really sets it off. Sometimes at Church when choir is singing I feel so dizzy and almost panicky. Have the urge to cover my ears.lol I have to watch tv.with closed captioning at times etc. Dr says that's the dysautonomia.
I'd recommend asking the doctor about librium generic- if it might help you. If they think so, I feel it's worth a try- it's pretty inexpensive and you might find it helps. Sometimes my brain feels kind of like it's electrified or something. I had a dr. express an SSRi would probably make me feel like I was bouncing off the walls with the tachycardia problem I have.
Ok thanks I will discuss it with Dr. Ssris in my opinion make things worse in people with dysautonomia. In my case they almost killed me before we finally figured out what was shutting my body down. I am sure that's not the case with many people its just my opinion.
Hello. I saw your post about anxious feeling being worse during certain situations. I have this also and can't watch high anxiety films or tv shows. Once during church service when I was singing I blacked out. Had to call the ambulance. So silly, but I think I was doing something strange to my oxygen when I stand up for too long and sing and also it does something stange to my blood pressure. But It's usually the singing. But loud noises or too much stimulation is just awful for me. Never used to be, I was the first one to a loud concert in the day. Such a change of life. Hang in there. Just wanted to tell you that you are not alone.
PS I can't take meds as I have become sensitve and very reactive to 99% of them. I hope they work better for you. Keep us informed.
Tkimber-thanks nice to know its not just me. I always loved things fast paced, loved scary movies, action type things. Now can't do. Singing also bothers me. I thought maybe it was Gods way of telling me not to sing.lol Just kidding. I wonder if maybe it does a vasovagal thing causing the symptoms.
I am very sensitive to many meds which is why I am always hesitant to try something new. My Dr finally realized this about me and he is fairly understanding now. I just hate this wired up feeling I so often get.
That made me laugh. I think God was giving me the same message about singing...I like to think I have a good voice, but i know deep down...it's awful! :). My boys tell me I'm the only mom who thinks the radio is my backup singers. Yes, and no more scary movies for me. It just does awful things to my system. It actually happened during that James Bond film a few years ago too, so incredible. It wasn't even that much of a high anxiety film. Good luck and feel better soon.
For a time, I seem to remember feeling short on oxygen in church standing singing too. Haven't noticed much if at all of that lately. But I also have had to cut back on singing due to arthritis in my jaws and jaw discs displacement (one is torn).
Maybe we all just aren't supposed to sing.lol I think somewhere I read once that singing was one of the triggers in dysautonomia. It may have been on the dinet site.
I am also finding my voice just disappears if I talk or sing even for a short time. Not laryngitis its just gone. Don't know if that's from dysautonomia or ms though.
I can only speak from my own experience and a disappearing voice (when not sick) has not been the case with me. I believe some day, God will have all His children singing His praises in our new glorified bodies - and in perfect pitch!
Aw Surgi, that would be nice. But I'm afraid God will have me do the same thing I did in some of the theatre musicals I did in college....mouth the words. Not a good singer, but I can fake it pretty well. :) But am looking forward to that glorified body!! I also lose my voice when singing, but had thyroid cancer and that seemed to make it worse. And I notice if I'm anemic or have not eaten enough salt and drank enough water, I get even more dizzy than usual.
Thank you for posting the last few days. Just reading 2 things in your posts was very validating for me!
1) That "electrophysilogist says they aren't classic panic attacks but wired up nervous system from ANS."
I have had anxiety and panic throughout my life, but I really believe that it is what you wrote above! I have never heard someone else say it. When you tell you doc that you have anxiety, they don't consider it a symptom of your illness, they think it is the CAUSE of all of your symptoms. This is so frustrating. I am a clinical psychologist and see no shame in anxiety or depression, but it infuriates me that most docs who can not figure out what is wrong with us, just write it off as an axiety or depressive disorder.
2) I can't take meds as I have become sensitve and very reactive to 99% of them.
I am the same way...always have been!! I tell the doctors and they don't believe me. I tell them to give me the lowest dose of any med or a child's dose. I wonder if this is typical for people with Dysautonomia. I always wondered why I couldn't drink alcohol without feeling really ill right away. I just learned why from reading about dysautonomia...alcohol diates the blood vessels and we already have ours dialated too much, so it makes our symptoms much worse.
You guys make me smile so much. Having kind of a dark day today and I needed this. Sorry, probably shouldn't be smiling at the problems of others ... but misery really does love company sometimes, you know? I'm putting my responses to everyone below by name because I need organization today to keep my head on straight. It's one of *those* days. (I'll explain in a minute when I start my own thread about what's up with me yesterday/today.)
Your concerns about benzodiazepines are valid; some people do develop addiction issues with them. I think it's important, though, to make a distinction between addiction and physiological dependence. Addiction is a type of pathology. Addiction leads to drug-seeking behavior where a person wants (and feels they need) a drug, and often greater and greater quantities of a drug, in order to feel a certain way. Addiction is often paired with behaviors such as lying, stealing, prioritizing the drug over friend/family relationships, etc. I think addiction often has both physiological and psychological, as well as behavioral components.
Physiological dependence, as I understand it, is an issue of when your body's physiology changes to accommodate the presence of a drug in your system, such that sudden removal of the drug will cause withdrawal symptoms. (Whereas slowly tapering off the drug allows the physiology to return to normal and operate as it did without the drug.) The body may also develop a tolerance to the drug such that, much like is possible in addiction, it takes greater and greater amounts to achieve the desired effect. A person on a high dose of prednisone (a steroid) of a length of time will become physiologically dependent on the steroid, and in order for their doctor to safely discontinue the drug from their regimen, it has to be slowly tapered down (even if it was abruptly started at a high dose). But I don't know that it would be technically correct to call a person "addicted" to prednisone. If you do take it away too quickly, you're not going to find the person on a street corner hustling for more of it, or "fiending" for their "prednisone fix." They may get ill, but there's not that compulsion to get more of the drug or the behavioral disorders attendant with addiction. I hope that makes sense.
With benzodiazepines, you have a gray area, to be sure. There are people who VERY MUCH get addicted to them, particularly the more "popular ones" (of which, I wouldn't say either clonazepam or librium is one). There are also people who are on them for *years* and develop a physiological dependence without ever showing any sign of addiction. I've been taking some form of benzodiazepine almost constantly since 1999; lorazepam until last year and now lately switched to clonazepam. I didn't have issues with needing more and more of it to get relief; in fact, a few years ago I was able to reduce my dose to 1/3 of what it had been and still get relief (slowly tapering down, of course, to avoid withdrawal effects because I do have a "dependence" on it) of my symptoms. In general, I think at this stage in my life I require a relatively tiny dose, perhaps because as mentioned elsewhere in this thread, people with dysautonomia can sometimes do well with "mini" doses of things for whatever reason. (I have my theories about why, but I am SO not a pharmacologist, so I'll leave that alone.) As far as what happens when it is suddenly withdrawn ... for me because I take it daily (rather than PRN) and have done so for so long, it does cause a bad withdrawal reaction. We would never intentionally do that, and both times it occurred were mistakes. You live and you learn, and I know to keep a closer eye on things now.
I recently had an immediate family member who had been on a benzo for years taper off it completely without issue. They also never showed any signs of addiction (vs. dependence).
On the other hand, I would be lying if I said I hadn't read horror stories online about people who had hellish experiences with benzo addiction. Like anything else, I suppose it depends very much on the individual. We have several forum members here who take them with good success (I suspect we're all on quite relatively low doses, but I'm not sure), but we're not representative of everyone.
In the end, I think it's just one of those decisions you have to weigh out for yourself. In my life, it's one of the meds I would have a very hard time agreeing to discontinuing. It has made such a dramatic difference in symptoms that just were not manageable otherwise and has improved my quality of life to such a degree, that I'm fine if I'm on it for the rest of my days on this earth. I very much know what addiction feels like, because I was very VERY badly addicted to cigarettes before I quit. I honestly don't think I ever would have successfully quit if I hadn't had a cancer scare, and it was still probably the hardest thing I've ever done in my life. When I was off my benzo (at the time, lorazepam, and a high dose of it then too), I felt absolutely *horrid*, yes. But I wasn't craving lorazepam at all. My body nor mind never really even made that connection. I don't "fiend" for my next dose if I'm late taking it or miss one. (Even though that's one of the short-acting ones.) I've had leeway to take extra mg of my benzo PRN, and only did so maybe 3-4x a year on average the whole decade+ I've been on it. I guess knowing those things, and comparing the feelings between the cigarette addiction and the benzo dependence reassures me that, at least in my mind, me being dependent on this to treat legitimate medical symptoms is no different than a diabetic being dependent on insulin.
If you think the medication might give you relief from your symptoms and improve your quality of life, it might be worth a try. But I think it is realistic to consider the implications of physiological dependence on a drug. I also think it is wise to start with the lowest dose possible and raise it only if necessary. (I started clonazepam at 1/2 of a 0.5 mg pill per day which seems sufficient if I'm not under excess environmental stress.) If you are concerned about dependence and/or addiction, definitely discuss it with your doctor. You may also want to consider family history, as I think addiction has been found to have a hereditary component (as far as putting a person at higher risk goes)? You could probably ask for more information about that in our Substance Abuse Community and they'd be happy to answer your questions.
I felt like I had a kindred spirit as soon as I read your post. I hope you don't mind me saying so ...
It seems as though you had a "paradoxical" drug reaction. I mean, I don't know if it would officially be called one in medical terms, but you seem to react to clonazepam vs. librium in the exact opposite manner that would be predicted by their known properties. Which is SO typical for some of us with dysautonomia, isn't it?? I've had some weird drug rxns, and it's like the doctors look at you like you're nuts or making it up or something!! Are we wired backwards or inside-out, or what?! :-p
Both clonazepam and librium are benzodiazepines, but librium "should" actually be more prone to cause depression. Here, it's probably easier to quote wikipedia than to try to paraphrase:
"In tests of various benzodiazepine compounds, chlordiazepoxide was found to cause the most profound reduction in the turnover of 5HT (serotonin) in rats. Serotonin is closely involved in regulating mood and may be one of the causes of feelings of depression in rats using chlordiazepoxide or other benzodiazepines."
Sorry, I hope you realize I'm totally not reveling in your icky reaction to klonopin. I just wish the docs/researchers would get around to collecting data on these instances and analyzing WHY we folks with dysautonomia are having bizarre reactions to drugs that seem to defy the pharmacology of the substances themselves, or are "rare" except that we *always* seem to get the "rare" side effects, or why some of us can only tolerate pediatric doses of stuff, etc., etc., etc. What is going on in our bodies? We're each so unique, but we keep having these lightbulb moments where there are these common threads that we seem to share.
Sorry, I think I'm rambling. I wonder if the doses of the two drugs were equivalent (I do know that doctors have equivalencies for all the benzos). Too bad we don't have a pharmacist hanging around. :-p
Heiferly, hope ur doing ok. U have been through so much. Thanks for your input. I just came from a long visit with my primary care Dr. He is finally going to educate himself on dysautonomia. He was very kind and as for the klonopin he feels I would benefit and says with my.personality he isn't concerned about addiction. My family history has none in it either. He says if klonopin isn't effective we will try the librium next as I already have the klonopin. He agrees with my electrophysilogist that my anxiety is not a mental thing but a direct effect of my ans being confused and dumping adrenaline inappropriately. He wants me to try it prn as he knows how miserable I have been. It's so nice to finally have drs not throwing the classic line that ur just anxious at me although I haven't had that happen as often as so many I have heard about.
I told him I am not expecting to be cured although that would be great but I want to be able to function at the best level I can. He also suggested a rollator with a seat. That I have the pride problem with:(
I love this forum. Without u all I would feel so alone.
I suppose this one should be addressed to "tkimber et. al." since the conversation re: singing and symptoms has included others. Here's my take:
During cardiac rehab (in "stage II cardiac rehab" you're on an EKG throughout and BP is taken a few times each session, which gives you a LOT of data on what causes what by the end of 36 sessions), we found that just *talking* caused major ... I'll call them "upsets" ... to my autonomic nervous system. My heart would go haywire tachy, and if I added any gestures into the conversation, all bets were off ... syncope might easily ensue. Mind you, I was SEATED at the time. I can only imagine what happens when I talk whilst upright. Well I know, actually. On several occasions I've dropped like a rock mid-sentence while trying to tell my Mr. McDreamy something, hahaha.
Singing, as I learned in BioAcoustics during college (ooh, I just KNEW that the MOST tedious class of my entire major program would come in handy some day), is really just drawn out talking. I had a 1:1 tutoring session with a fascinating lecturer (a professional singer, among other talents), who balked when I told her I "couldn't" sing. I'd actually sung in the choir during one year of high school; perhaps what I meant was that I sung *horribly*. She explained that this was simple nonsense because anyone who has a voice and can speak (or vocalize at all, really, words are inconsequential) can sing. I'll spare you the physiology lesson, but this woman got me singing. Red in the face, embarrassed like no other time in my life, but I drew out my voice from staccato speech progressively to longer and longer tones until I was producing musical notes. To my ear, ugly, tortured musical notes, but she seemed pleased enough with the lesson.
The punchline is that if just speaking can make your HR go haywire, I imagine the drawn-out respiratory effort of singing REALLY does a number on it. We also know that BP is affected by talking (that's why it is recommended to zip the lips when doing your orthostatic BPs to get accurate numbers); of course fluctuations in BP and HR often go hand in hand, though not always.
For my part, I mainly restrict my singing to intentionally off-key renditions of 80s and 90s "hits" (oh, do I ever use that term loosely), sung with bits and pieces of missing or botched lyrics for the amusement (torment?) of Mr. McDreamy when I'm feeling silly.
I am going to post something regarding the anxiety not being "emotional" anxiety but rather a physiological phenomenon, but my intuition says that, particularly in light of beema's struggles a the moment as well, this is something the whole community can benefit from right now. So I'm going to start a new thread for this one. Please do go back out to the main Dysautonomia Community forum page and look for that post (I'll title it something re: anxiety) as I think you will find comfort in it as well. I know that I thought it was a gem when I came across it; I highlighted it in my copy of the textbook.
At some point, I'll get around to letting you all know what's up with me. Want to finish up loose ends on this thread first, then vent my stuff ... desperately need to. Sometimes I feel odd coming to you all for support ... maybe because the button is entitled "Post a Question" and my OCD gives me the willies when I have to click it on a post that doesn't contain a question. Probably sounds silly to people without OCD ... wish I had a button that said "Vent Now" so I didn't get that feeling of "not rightness" every time I went to just reach out to you all for support but didn't really have a *question* in mind per se. Sigh.
I don't recall what the Klonopin dose was, but I first was on Librium generic 10 mg 4 times a day if I remember right. Currently, though, I take 5 mg very occasionally.
Funny thing, some time before I started taking Librium generic, I was put prophylactically on Serzone generic for migraine prevention and for awhile it worked like a miracle. I was told the theory was with migraine sufferers, their seratonin was being snapped up too fast, so thus a seratonin reuptake inhibitor. But later, when I hadn't been on that for months (stopped being effective for preventing migraines) but was on librium, my migraines seemed to be in remission until I started Celexa generic for the depression that came on, at which time the migraines came back with a vengeance. I don't take Celexa generic anymore though (haven't for years).
I occasionally take Valium generic- 5 mg for TMJ muscle pain or for interstitial cystitis pain, but I think it might make my tachy act up worse than the librium generic (which I take for anxiety and for when my brain feels something like one of those sizzling sparking wires/hyperdrive static or something. Does this ring a bell with you? I also think the phenergan generic I take for migraines makes the tachy worse, but I take it anyway. I think likely all three of these drugs make my GERD worse.
For some reson I didn't get your note that you wrote to me about singing. Thanks for clearing up why I can't sing. This all makes sense, and so true...if I talk on the phone in the morning I get seriously dizzy and just don't do it. Interesting. But still think I'm just a terrible singer on top of it. haha. Thanks for your post.
Just to add my 2 cents worth, in the late 1990s I was prescriped clonazepam for anxiety due to PTSD from Vietnam (That started in 1968. I was diagnosed in 1995. I am a little slow on the uptake.) Recently I was on a dosage of 0.5 mg twice a day from my psychiatrist and was doing fine. Last year my neurologist suggested upping it to 1 mg twice a day to help with my neuropathy and autonomic dysfunction. I still have no problem with it. But that is me. Everyone can be different. I did find out. by accident, that you can have very bad withdrawal if you stop taking it suddenly. I visited my daughter, out of state for a week or so and forgot my clonazepam. It was a bear and my wife met me at the airport with my meds when I got back. Haven't done that again and make sure I refill my script on time.
I also want to thank you for your service to our country, and for the sacrifices you made. I also suffer from PTSD (as well as OCD) and had been on lorazepam (a benzodiazepine like clonazepam) for years due to that prior to the onset of my dysautonomia. I switched from lorazepam to clonazepam in 2010. I think it definitely helps me with both anxiety disorder symptoms and autonomic dysfunction symptoms.
You aren't kidding about withdrawal, though. Benzo withdrawal is actually a well-documented phenomenon in people with *healthy* nervous systems, so I imagine we get it at least as bad if not worse than the average healthy person. In my case, it leads to a severe reflexive bradycardia among other symptoms, which is very frightening.
I hope you are doing fairly well. I haven't checked in with you lately. I've been pretty caught up in my own issues and my presence here has been rather spotty, unfortunately. Drop me a note sometime if you need anything or want to catch up!
I don't really know if the klonopin helps or not with the neuropathy or autonomic dysfunction. I only noticed last June that I was strarting to feel lousy and it keeps getting steadily worse. I seem to hit a plateau at times and feel like I am not getting any worse for a while and then seem to get worse again. My wife says she cannot understand how I can keep a positive attitude and perhaps the extra klonopin is helping by treating the accopanying anxiety. The VA Medical Center here could not do anything about the autonomic dysfunction so I havbe been referred to the Vanderbilt Autonomic Dysfunction Clinic in Nashville. I go for tests and a doctor's appointment on April 5th. Hopefully they'll be able to do something. The chief of cardiology put me on 60 mg of prednisone (a steroid), thinking it would help. When I was taken by ambulance on Christmas day to the local hospital for 2 days every doctor asked me why I was on steroids and why such a high dose. I got off those as quickly as I safely could.
One more thing: when I was first diagnosed with sinus bradychardia and orthostatic hypertension a cardiologist at the ER waqntewd me to stop a lot of meds, including klonopin, immediately, cold turkey. A quick response to an email to my psychiatrist told me that was a very bad idea and would probably send my BP through the roof.
Good luck to you both and everyone else. I'll let you know what happens after my appointment at Vandy.
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