Coming off klonopin = not fun/easy/symptoms

Discussion in 'Fibromyalgia Main Forum' started by Sidereus, Jan 13, 2003.

  1. Sidereus

    Sidereus New Member


    My doctor is having me go off of K from 1.5 mg/day to .5 mg/day. I have been taking 1.5 mg/day or higher since 1996. Needless to say, after 3 days, my body is very unhappy with the results thus far. Also, I have been instructed to boost my Neurontin to 3 x day at 300 mg. I have been taking 1 x 300 mg at bedtime since 1996. Not sure if I feel any differently from the Neurontin.

    I have a lot of chest pain. This symptom was common before decreasing K. Upon awakening a few minutes ago with chest pain and dizzyness and cold chills (happens frequently but seem to be a little worse since the drug change), I physically touched my chest area and there was pain ranging from sharp to dull in a very specific spot. I am sure that I have noticed this before but I find it to be very odd. The area is the center of my chest towars the lower portion of the rib cage and, also, just to the right of the center in that area. When I press in that area, it seems to trigger pain and an odd response from my body (not panic) similar to some of my random chest pain symptoms. Odd. I had several EKGs in the past with nothing out of the ordinary and I had a tilt table test with a positive result in 1995 (after the drug was administered in my system).

    I guess I am wondering two things here regarding chest pain:

    1. Is there any possibility that my rib cage/*something* is causing a pinching action that effects my body this severely?

    2. Does this have anything to do with the vagus nerve, and does it run near the front of the chest area?

    I am not a doctor so I am grasping here . . . but since they have all but ruled out a "heart problem", then it leaves me to wonder if there is anything that could have been overlooked that is out of the ordinary.

    Yes I experience pain in that area during panic-like states. However, my panic (which really comes at random) is a bit odd. Rarely does my heart rate go "up". I have trained myself to "just let it go" even though the experience is just as scary as the first one. Yet, for the most part, I am able to control my heart rate during this ordeal?! Not sure how I pull that off sometimes.

    As far as other symptoms are concerned, some withdrawal effects are:

    tingling gums and my teeth hurt
    even more disorientation
    slight increase of panic-like symptoms (expected this)
    a "differnt" type of headache
    more chest pain (not sure if this is just a coincidence)
    cold/tremors (again, experienced this before)
    some depression

    The cold/tremors is a tough one! Regardless of how much I turn up the heat or the amount of clothing that I throw on (typing this in my winter coat with a shirt and a vest), I am unable to shake the shakes! Very unsettling feeling, and yes, it eventually disappates but not without leaving me spent. This is a *different* sensation than the panic symptoms. Also have been experiencing this one for many years since CFS.

    Intolerance to the cold is extremely difficult on my system. As well has heat. But since it is really cold in Indiana now (where I am), it doesn't help.

    I see my doctor again in about 3 weeks. I only hope that I can continue my drug adjustment to appease him and then see what happens from there. I posted earlier that the doctor wants me to go off of K totally. He doesn't have a problem with N because it is "safe". I am starting from scratch with him. He doesn't believe in CFS. Fine. He is going to have to make some diagnosis after I do not respond to (I am sure) tests that will be administered. I hope that we stumble upon something that hasn't been noticed before. I guess there are a couple of outcomes:

    He'll find something wrong with me that tests have not shown during the past few years (Dr. Lapp diagnosed me in 1996) or . . .

    He'll be confounded with my symptoms and start to research CFS more intensely.

    Truthfullly, I hope he does find something. He is very young and hopefully has an open mind. Despite the fact that he doesn't believe in CFS. Who knows? I know I am confused every day by the illness.

    Talk with you soon . . .



  2. Mikie

    Mikie Moderator

    I know that many docs seem to favor Neurontin over Klonopin, but once a patient is established on the Klonopin, I cannot understand why a doc would try to reduce the dose and switch to Neurontin as long as you were tolerating the Klonopin well.

    My rheumy told me that he favors Neurontin but that it would not be in my best interest to make a change since the Klonopin is working so well for me. From what I have read here, it seems that it is more difficult to get the dose of Neurontin just right and it seems that people seem to build a tolerance to it, involving increasing the dose. I have not had this happen with the Klonopin and I have not read of others here having it happen. I've been on the same dose of Klonopin for more than a year. It not only helps me sleep, but it does away with my tinnitus, sensory overload, and anxiety/panic attacks.

    Perhaps our friend, Madwolf, will come along and have an opinion on this.

    Love, Mikie
  3. LuvMeCritters

    LuvMeCritters New Member

    I was on Klonopin since July 02. I weaned myself off of it several weeks ago, because it quit working for me. Even when my doc doubled the dose to two 2mg/tabs/day. I think I built up a tolerance to it. I asked my pharmacist and he said yes this happens. Needless to say, I haven't been sleeping, have been having a racing brain, tossing/turning, very agitated, clenching my jaws/hands, when I try to lay down to sleep. During the day I've had waves of dizziness, and my depression is at it's worst. I explained to my counselor what was going on and she said it sounds like withdrawel symptoms to her. Well, after being so very tired from not sleeping I took one last night to see, and though it didn't work as fast as it used to (I let it melt under my tongue), I did sleep..finally...praise be! I don't know if it was the Klonopin, or just sheer exhaustion. I have had a lot more pain in new places since quitting the Klonopin. Mainly along the sides of my ribs. And my worst areas (neck/shoulders/arms) are definitely much worse without the Klonopin. During the few times I attempted to take one, while not on it regularly, it was almost like it gave me reverse side effects...agitation, etc., instead of calming me like it used to. So, sorry for rambling, but I just wanted to put my two cents worth in. :)

    Good Luck to You,
    Regina :)
  4. nancyneptune

    nancyneptune New Member

    exactly right. It's withdrawl symptoms. You get back what you went on it for in the first place only double. Why must you go off Klonipin? Tell your doc you don't want to.
    I see no point in suffering like that if it works for you.
    Also the dose cut was too drastic! Take it VERY slow go back to 1mg. a day and taper as long as it takes. Your doc should know this.
    Maybe he isn't the one for you. N
    [This Message was Edited on 01/14/2003]
    By the way, your vagus nerve is above your stomach, deep. I doubt that it is causing your chest pain.[This Message was Edited on 01/14/2003]
  5. starstella

    starstella New Member

    of the tender spot in your chest to the right of the midline of your chest reminds me of a trigger point mentioned in Clair Davies's book, The Trigger Point therapy workbook. There is a spot which can influence heart rhythm. There are also other trigger point spots in the pectoralis muscles which will create chest pain.

    Why is your doc taking you off the Klonopin? Does he think Neurontin is a better choice. I couldn't stay on Neurontin very long. Tremendous dizzy spells, especially when driving (the cars whizzing by would really set me off). Also some depression. I was thrilled to go off of that. I've just started Klonopin.

    Best wishes with working with your new doctor.
  6. Sidereus

    Sidereus New Member


    I started another thread regarding my troubles today (chest pains upon awakening).

    Regarding why I am going off of K . . . not my choice! My NEW doctor said that I should go off of K and do it first. He wanted me to go from 1.5 to .5 mg /day in two days time. I only made it to .75 during the past 4 days and last night I had a tremendous amout of pain/utter weakness and possibly panic. Today, I couldn't even walk and my chest hurt SEVERELY. Not sure which is worse - the chest or the head pain (and both feel as though someone is constantly squeezing them).

    Interesting about the tender spot. Definitely one of the trouble spots for me. At least one where I can cause the pain to start. Mostly, it is "internal". Believe it or not, I cannot always make the pain start! I just started this yesterday . . . something else that may be odd is that anytime I wear a necklace (I am a professional musician and wear, well, um, sometimes, odd things - in good taste ;) the slight touch of the neclace dangling down causes extreme agitation, as in it is very sensitive. Not sure what that means.

    "Does he think Neurontin is a better choice. I couldn't stay on Neurontin very long. Tremendous dizzy spells, especially when driving (the cars whizzing by would really set me off). Also some depression. I was thrilled to go off of that. I've just started Klonopin."

    He said that it is a safer drug and there is a lot of room to work with it, which after years of taking it and research, I agree. However, I have NEVER taken more than 300 mg/day until 3 days ago or so. Not sure if my body is handling it well at all. Therefore, I am going back to the med levels where I could at least drive to the local store without too much difficulty. I emphasize "too much".

    Hopefully, I will be able to see the doctor tomorrow. Hopefully, I will have a peaceful night. Currently, it is not going well at all. My head is in extreme pain. Anyone know what to do about extreme headaches?

    Thanks for the reply.

  7. Sheljax

    Sheljax New Member

    Hi Richard,
    I saw your post and wanted to respond and let you know that several months ago my doctor wanted me off the klonopin, not because it was not working but because its not a drug they seem to want us on.

    However, after my going through horrible bouts of withdrawels and terrible symptoms I told him I was not going to continue to feel these feelings, as this went on for a couple months.

    I finally went to see my Physchiatrist, and even though he has helped me ween down to .5 mg he says there is no reason to ever put my body thru all that you go thru to get off klonopin, and that he wants me always on this amount. Says its not enough to harm me, .5 mg, but will keep me from ever living thru the hell I went thru trying to get off this stuff.

    So my advice to you is tell your doctor there is no reason to not stay on the small dosage, as I am here for one to tell you that getting off k, is the worst drug I have ever tried to come off of ever.

    I hope this helps you in some way, and my best to you Richard. Good Luck.....

  8. Mikie

    Mikie Moderator

    Don't these docs realize that we are constantly living in a slight state of seizure? Would they suggest that people with epilepsy stop their meds? This is just nuts!

    Love, Mikie