Discussion in 'Fibromyalgia Main Forum' started by Rafiki, Sep 22, 2008.

  1. Rafiki

    Rafiki New Member

    I was going to post this rant on Xanax in answer to a question someone posed but realized that they need an answer not a diatribe. So, I'm going to give Xanax its very own thread for your consideration.

    I had my first panic attack when I was 18. I had Panic Disorder which was quite difficult to manage from that time on. I was prescribed various benzo.s which made me feel different but could not stop a panic attack. Valium was problematic because I liked the buzz and wanted to abuse it but didn't.

    I avoided subways, airplanes, elevators and travel. It sucked.

    I desensitized myself to all my phobias several times with good therapists and in group I was always the top of the class. The panic attacks came nevertheless. To me, they seemed like seizures and there is some reason to believe that they may be. My EEG is suggestive of seizures. (Google "panic disorder epilepsy" for more info)

    When I came down with the virus that led to ME ten years later the panic disorder went into overdrive. I was having such frequent attacks that there were times I could not leave the house. In fact, at its worst, I was afraid to be home alone. It was hell.

    Five years after that, and 15 years after first developing Panic Disorder, I was prescribed Xanax. I was afraid to take it. I was afraid of anything that would change my state. It certainly did change my state -- forever and for the better.

    Xanax is a panic blocker. If you have Panic Disorder which may be, as I wrote earlier, a seizure disorder, Xanax is an appropriate, safe, well tolerated and life changing medication.

    I have taken it off and on, but mostly on, for more than 20 years. I have never taken as much per day as I was originally prescribed; they used to prescribe high doses for PD in those days.

    Because of Xanax I have traveled comfortably all over the world. I not only take the subway but have ridden on both the longest subway in the world in London and the shortest in Istanbul.

    I don't know if I have developed even a physical dependency on it beyond the fact that it stopped the attacks that had crippled me for 15 years before I began taking it. I don't crave it, I don't take much (1mg these days) and I don't get a buzz from it so I'm not interested in having a Xanax party.

    I believe that panic attacks are not the same thing as anxiety attacks. Panic attacks come out of the blue, without a build up of anxiety and without provocation. They can lead to a secondary anxiety disorder which produces generalized anxiety and anxiety attacks.

    Xanax has value as a street drug because it will bring people down from a "bad trip" real fast. It is also popular among addicts who want to manage their anxiety because it is very effective. However, the fact that something is popular with addicts does not mean it is highly addictive.

    Xanax has no patent protection so is not a profitable drug. When it was a profitable drug, there was no talk about it being addictive. Interesting.

    SSRIs are highly addictive. Everyone is told not to stop taking them suddenly because they will go through withdrawal. Everyone knows how addictive they are, everyone knows how profitable they are and almost everyone is prescribed them. Interesting.

    There is a hysteria around Xanax that is absolutely crazy. There are studies that show that people with Panic Disorder do not abuse Xanax and that it remains effective for a very long time.

    If you don't get symptom relief with whatever med. your doctor prescribes and need to have this conversation with her again, perhaps you could go armed with these studies.

    There are so many people on this board with panic attacks who have found effective symptom relief with Xanax. There are also, myself included, many who believe that Xanax effects more than just the panic and, somehow, is helpful for other symptoms. I know that my long 80% remission coincided with my beginning to take Xanax.

    Ok, I'm done.

    Really sorry to go off like that.

    Peace out,

    [This Message was Edited on 09/22/2008]
  2. greatgran

    greatgran Member

    Thank you for this excellent post!!!!

    I agree 100 percent with evey word. For me it has been the best medicine ever for my panic and anxiety.

    I have been on and off like you for about 20 years, the last 7 years I have been taking it daily. Never increased my dose but with all the family turmoil going on I think I am going to increase it for awhile.

    I take .25 three to four times a day. My Rx calls for .05 three times so may try that for now.

    One thing since CFS my anxiety/panic is different and so much worse. Before I have the CFS I had energy so maybe that is the difference.

    Thank you,

  3. Rafiki

    Rafiki New Member

    It's a frustrating situation, isn't it. I am really astonished that so many doctors just listen to the hype and don't look at the facts.

    I feel kinda like the kid in the story about the naked emperor. He has no clothes!!!

    Thank you both for being sane in the world with me.
  4. luvdogs

    luvdogs New Member

    Xanax is not an SSRI; it is a sedative. SSRIs are not supposed to be addictive, but you can have rebound depression if you stop them. SSRIs include Prozac, Cymbalta, Zooloft, etc. Benzodiazepams include Xanax and Klonopin. Xanax is a street drug, but if you're addicted to something like Xanax, that means you take more and more and more. If you stick to what the doctor gives you, you're probably ok.
  5. Rafiki

    Rafiki New Member

    I respectfully disagree with you about much except that, of course, Xanax is most assuredly not an SSRI.

    It is our differences that make life interesting, is it not.

    Peace to you,

    ETA Xanax is NOT a street drug.

    [This Message was Edited on 09/22/2008]
  6. Rafiki

    Rafiki New Member

    No, Puddleglum, I don't have a medical background but I do have training in Psychology and understand its limitations.

    I also am a devoted practitioner of mindfulness meditation which is absolutely amazing and has changed my life even more than Xanax :~) And, breathing is fantastic! I do pranayama and love it! An aside: I teach meditation.

    The neurologist who diagnosed my seizures, would argue that the Xanax is also necessary. I would suspect that as I become a more skillful practitioner, I may well learn to control the seizure activity. Who knows.

    It's possible to be a skillful practitioner who is unable to rid her/himself of an ailment. World renowned Buddhist Nun and teacher Pema Chodron has been unable to cure herself of ME. Seizures may be similar.

    Oh yeah, long ago, I also did years of psychoanalysis with a truly gifted practitioner. It was a very interesting experience but completely ineffective for PD. My shrink did become a good friend. And, I did some pretty good CBT, a therapy I respect, which did not have any effect on my panic attacks. It was sufficiently interesting that I became trained myself and used this tool in my first career.

    As for the studies re PD and seizure disorder, here's one from the BMJ:

    I'm sorry, Puddleglum, it's late and I can't remember if you had other questions.

    I'm so glad to find others here who practice the truly transformative arts that are so very important to me. There is a glorious transcendence which one may find as one becomes skillful. I am not very skillful yet - I have only been practicing for a little over a decade - but I have had glimpses of satori.

    May we all find peace, compassion and glimpses of enlightenment.

    with metta,

    PS Gosh, just realized, it's been more than 15 years of meditation now! Time flies when you're in the moment! LOL!

    ETA Puddleglum, it sounds as though you had an anxiety disorder which is not the same as Panic disorder so what I say her may not pertain to you. I did strive to make that clear in my original post and hoped to have described PD sufficiently to distinguish it from anxiety disorder or generalized anxiety.

    Okey-dokey... Peace out!

    [This Message was Edited on 09/22/2008]
  7. luvdogs

    luvdogs New Member

    I didn't mean to create a disagreement. Ok, maybe it's not a street drug, I don't have my facts right. I know some people take it as a recreational drug; that's what I really meant. And yes, maybe SSRI's are addictive (doctor's say they're not), but if you have rebound depression, that's a kind of addiction, right? I don't have anything against taking Xanax. By the way, I take Klonopin for my neurological problems.
  8. Rafiki

    Rafiki New Member

    We're good, I think. Some of our disagreement may simply be semantics.

    Anyway, people can disagree in friendly ways - sharing opinions is the way we all learn.

    After all, we both love dogs!

    Peace to you,
  9. star273

    star273 New Member

    Thank you so much. I agree. Xanax has been the only thing to help me. I DO NOT take a high dose. I have been on the same dose for 12 years. I thank you for everything you said. I am wondering what you meant by it could also be a "seizure" disorder. Please let me know.
    Thanks so much.
  10. Rafiki

    Rafiki New Member

    You can check out the link I put in my reply to puddleglum or do a google search: "panic disorder seizure" and you'll get lots of info re the differential diagnosis panic disorder or seizure disorder.

    I find this link fascinating given the possible link between ME/CFS and a reduced seizure threshold (Cheney, I think) combined with the anecdotal evidence here on the board regarding both onset of panic with ME and/or worsening of same.

    I always described my out of the blue panic attacks as seizures of fear. Some types of epilepsy present this way.

    I find the the studies I've found while googling very interesting.

    All the best to you,
  11. jole

    jole Member

    Rafki, I have read your posts for a long, long time now, and I nearly always agree with you. I especially do on this issue, and feel your uptake is very accurate.

    BTW, Puddleglum, I too share the theory that there is a huge difference between anxiety and panic attacks! For those of us who have panic attacks, it is very debilitating, not just an "uneasiness".

    I recently was at my daughter's bridal shower, quite happy, when a panic attack hit, and I nearly didn't make it out of the room! The severe fear of impending doom is so intense you can hardly move, yet you feel you need to get away immediately. It's the worst feeling in the world. My daughters all knew immediately what had happened by the look of total fright on my face, and one of them helped me from the room.

    After going to the car, taking a Xanax, and sitting alone to meditate, I was able to return to the shower and sit in the back of the room, embarrassed to face all the guests.

    Never did I expect to have an attack there, nor at church, or even in my own home, but it happens all the time.

    BTW, I was prescribed Xanax by my psychiatrist....who also had me in therapy at the time....so it will work with or without therapy. I have been on it for 5 years, and at times I will take 3 a day......then after months will forget, or go somewhere without them and be off them for several days. I do not feel the "need" for them, which means I am not addicted, even after all this time.

    The thing is, you don't get addicted to meds you need....it's the misuse of meds that causes addiction.

    Wishing all a pain free day, physically, mentally and spiritually****Jole****
  12. Rafiki

    Rafiki New Member

    Ok, I'm sorry but I can't stay on topic!!!

    Your story of your daughters wedding, on the chit-chat board, had me in tears -- good tears! I'm tearing up again just thinking about your granddaughter and the wonderful way you described the ceremony and her dance!!! It was just lovely!

    I'm really sorry that it was so challenging for you but it was clear that, despite the difficulties, you were very present.

    You're right, panic attacks are sheer torture. Some say that they are THE most painful non-physical (sorry, language challenged today:) symptom. And, of course, almost impossible to describe.

    Thanks again for the wonderful wedding story.


    [This Message was Edited on 09/23/2008]
  13. SkeptikSharon

    SkeptikSharon New Member

    What struck me as I was reading through these posts is the need to differentiate between two terms: addiction and physical dependence. These are two very different things. I think one of the posts mentioned addiction as being the drug-seeking behavior, the need to take more and more, usually against doctor's orders. However, addiction was also mentioned in relation to anti-depressants, and that is usually not true. Most of the antidepressants do not lead to addiction. However, they DO lead to physical dependence, because your body gets used to the medication being there. Thus, when stopping cold turkey, one can experience withdrawal-type symptoms, but this does not mean that they were actually addicted to the medication. Physical dependence happens with a variety of different medications, including SSRI's and other antidepressants and including our pain medications. But just because we experience withdrawals when stopping medications does not mean that we are addicted to them. I have experienced withdrawal symptoms when stopping antidepressants, pain medications, and even Lyrica. My body seems to respond really strongly in this way, and I almost always have to do a very slow taper down.

    As a side note, I have taken Xanax off and on for the last 10 years, and I am very appreciative of the benefits of this medication. It has helped me a lot through the extremely rough times in my life, helped me cope with anxiety. It still helps me cope with the sudden anxiety I experience, where I feel like I just want to scream inside my head and jump out of my skin. However, I do not feel the need to take it at other times. Even during the times when I was taking it every day, upon stopping, not once have I felt physical withdrawals from it. I have never felt the need to take more than prescribed or to visit multiple doctors to try to get prescriptions for it. No addiction and does not appear to be any physical dependence for me personally, either.

    I do have to say, I also appreciate the cheap price of the Xanax too, because some of the other meds I have tried are so pricey!

    Just my two cents... =)
  14. mujuer

    mujuer New Member

    I totally agree with you on the panic disorder. I have been hospitalized twice for it. I took Trazadone from 1994 until recently to get rid of my attacks. The Traz was the only thing that helped me. A couple of years ago my old dr. that I had before we moved a long ways off gave me some xanax to help me sleep for my fibro. Wow was it great. It was the only thing that made me feel relaxed enough to sleep. It just made my whole body feel like it wasn't so tense. Yeah, needless to say, my new doc felt that I shouldn't be on it long term so she wouldn't renew my rx.

    Now back to panic disorder. I read books on how to change your breathing, get to the root of the problem and such. They really did help BUT I feel and this is just me okay, that once it is turned on, you can't turn it off. My whole family suffers from panic disorder and once we had it, none of us have ever been able to completely stop it. We all deal with it in different ways and it is all controlled but it is a lurker and you never ever, ever, know when it can hit. Great thread. P
  15. Rafiki

    Rafiki New Member

    for the clarification re addiction and dependency.


  16. fibromickster

    fibromickster New Member

    Yes, this is a very interesting post. I take one at bedtime and never had the urge to take more than that. I don't know how someone could be addictive to it. It just helps me to sleep so well and I sure wouldn't want to sleep during the day.

  17. Rafiki

    Rafiki New Member

    It runs in my family, too. Maybe we are related ;~)

    I am so very sorry that your doc. will not prescribe this for you if it has worked. Perhaps if you go in with some information you can convince her/him. It is a great pity that you have to suffer needlessly!

    The other stuff is very helpful and I would suggest that you have all the tools that you can -- especially if you can't get Xanax. These tools can make a big, big difference in withstanding, reducing and even preventing anxiety even if they cannot completely block panic.

    I must say that, even before I started practicing Mindfulness, I felt completely and utterly cured with Xanax. Once I felt confident that I could either prevent or quickly halt a panic attack, I felt it was history.

    I'm not sure that I would have made such a huge change in attitude if I had not been instructed to take it everyday, 3x per day, without any discussion of stopping. There was no anxiety around my recovery -- I didn't feel that I had 6 weeks (whatever) in which to get better and then it would be withdrawn.

    What really amazed me was that I had thought I was a nervous, cowardly, dependent person but discovered that I was a very adventurous and independent woman when I wasn't having paroxysms of terror out of the blue. The first thing I did was set off down the Amazon in ever smaller boats until we were traveling in dugout canoes and sleeping in hammocks on the banks of the river. Without appropriate treatment, I never would have known who I really was.

    I also discovered that I had very good ability to withstand ordinary anxiety and felt no desire to take Xanax when anxious. Now, like Fibromickster, I take it at bedtime.

    Must say though, when I went down the Amazon, I made sure that I had Xanax in my pocket!

    Peace out,
    [This Message was Edited on 09/23/2008]
  18. Rafiki

    Rafiki New Member

    Seems this is your first post -- welcome.

    Good point about tapering down from time to time to prevent tolerance. I do that.

    I usually take my full dose at night (lifelong insomniac) and when it begins to lose its efficacy I take a lower dose (about 50%) earlier in the evening and take a little benadryl at bedtime for about a week. Then, I go back to my usual dose and it's back up to full potency.

    Xanax and very tiny amounts of estradiol are the only prescription med.s I take.

    Peace out,

    ETA Oh! I also take fairly long courses of antibiotics for recurring mycoplasma but I'm not really into drugs.[This Message was Edited on 09/23/2008]
  19. Rafiki

    Rafiki New Member

    Hi again,

    My computer has a mind of it's own! It often highlights blocks of text on it's own (!) and my next keystroke erases them.

    It did this when I replied to you so it seemed as though I totally blew off what you wrote and just went off yacking about myself. Ok, I did do that :~)

    I went back and rewrote my response as an edit some time later but I just want to make sure that you know I actually did "hear" you!

    Really sorry.

    Bad computer!

    Peace to you,
  20. jenn_c

    jenn_c New Member

    I suffer from PTSD, generalized anxiety and depression. My panic attacks I attribute to the PTSD. I have always felt that I had to defend taking xanax. It has helped me so much. Funny, I grindmy teeth when I sleep , or did until I started taking xanax. I had done that since I was a child. So 35 years of grinding stopped immediately since taking xanax. It also has helped with onslauught of flares of my FM. If I get that feeling in the pit of my stomach, when your stomach feels like it is in your throat, I take a .5 or 1 mg. I too do not take as much as perscribed.

    Thanks again,