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benzo withdrawal mimics CFS

Discussion in 'Neurological/Neuro-sensory' started by faith.hope.love, Mar 25, 2011.

  1. faith.hope.love

    faith.hope.love Senior Member

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    For any of you taking benzodiazepines to help you rest, take great care in realizing which symptoms are related to withdrawal, and which symptoms are due to your CFS. For at least a year, I have been experiencing Ativan withdrawal, but never made the connection until recently. I was diagnosed with POTS and CFIDS before I took Ativan on a regular basis, so I just thought I was having frequent flares. The symptoms are EXACTLY THE SAME.

    I never thought there would be an issue because I was taking the drug at relatively small doses as prescribed, and I wasn't taking it every day. Little did I know, that was part of the problem. Withdrawal symptoms can begin within 24 hrs, so as soon as you miss your next dose. I was taking it 3-4 days a week, then I'd go without for a few days (thinking that would keep me from becoming dependent). I kept getting horribly sick EVERY WEEK, (muscle spasms, migraines, weakness, fatigue, dizziness, flu-like symptoms, low blood sugar, sweating, shivering, palpitations, etc) and I noticed it all went away with my next dose of Ativan. Suddenly it just clicked. Now I'm to the point that I doubt I even have CFIDS at all. I have POTS, hypothyroidism, and some autoimmune and endocrine issues, but I think the rest of my problems have been benzo-related, more so in the last year.

    Have a read.... http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome

    This has changed my entire life. I'm now on a slow tapering program. (Luckily I wasn't on a high dose, just 0.5-1mg once per day as needed.) It will take about 6 months to get off the drug, but the damaging effects to my central nervous system may last for years, or may even be permanent. Don't let this happen to you. I was never "addicted" -- that requires psychological need for the drug, and abuse of the drug. I became dependent with long term use, but I have never abused a substance in my life. I am in my mid-30s, never had a beer in my life, never had a cigarette, never tried any illicit/recreational drugs, so it's been crushing to me to discover that I can't just stop taking a medication without severe withdrawal symptoms. All I wanted was a little something to help me sleep during the day because I work night shift... The Ativan (lorazepam) seemed to help, I didn't have any side effects, figured it was harmless. Little did I know it's one of the most potent, addictive substances on Earth, and withdrawal from Ativan is worse than withdrawal from alcohol, meth, heroin, and opiates. I will be closely monitored by my physician for a long time to prevent withdrawal-related seizures, and I have a very long road of recovery ahead.

    I just had to come back here and explain this in hopes that I can help at least one person to not make my mistakes. Be careful with the drugs you choose to help you rest. Wishing you all good health.
     
    taniaaust1 likes this.
  2. LaurelW

    LaurelW Senior Member

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    Thanks for bringing attention to this, Faith. I think that not enough is well-known about the downsides of these meds.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I will be interested to see how you go. I was sleeping badly with onset of cfs pre sleep meds and a sleep study confirmed i got poor sleep. I have found sleep meds helpful but im not sure whether to try and stop as cfs is obviously chronic and the underlying condition causing the sleep problems (viral cytokines etc) is still there. Im looking forward to see how you go and understand about benzo withdrawals etc but i also think that in some of us cfsers, parts of our brains are over stimulated causing that tired but wired feeling. I think if theres ever a cure for cfs, then i will have to deal with benzo withdrawals then i guess, its the horse or the cart scenario.

    cheers!!!
     
  4. faith.hope.love

    faith.hope.love Senior Member

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    Thanks. It's not going very well, but this is just the first week. I still have plenty of chances to make changes in my weaning schedule. I think I'm going to replace the Ativan with Valium because it has a longer half-life, and it sort of eases the withdrawal from Ativan (which is short-acting). I have to tell you the pain and those symptoms are actually a bit harder to deal with now that I know what's causing them. Before, I just accepted it as a way of life, and lived in pain. Now that I know I don't HAVE to be in pain, I'm very impatient for it to stop so I can go back to my happy, normal life. I can go about 12 hours before withdrawal kicks in, and then it's like I slowly go into "fight or flight" mode. Starts with muscle tension in my neck, then spasms, then joint pain, and an aching feeling in my legs; they feel like lead, so heavy and weak. Then my heart starts pounding/racing, and I feel like I'm having a hot flash. I start sweating, shaking, and feeling nauseated. I feel sort of twitchy and uncomfortable until I can have my next dose. I think the Valium would allow me to "coast through" more than 12 hours, and make this a little more tolerable. Definitely have to avoid caffeine, which is killing me because I'm so tired. But obviously if my brain is in this hyper-excitable state, taking another stimulant is going to worsen symptoms.

    This is really, really difficult. I wouldn't wish this on anyone. I started to think maybe my life would be easier if I just stayed on the drug, but no... I will get through this. I refuse to live by a clock, knowing I have to take a pill by a certain time or my body will go haywire and my life will be hell.
     
  5. faith.hope.love

    faith.hope.love Senior Member

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    More thoughts on this:

    Another reason I don't feel that I ever had CFIDS to begin with, I have always slept well, a solid 8 hours per day. Supposedly with people with CFIDS do not feel refreshed with sleep; I did. I used to sleep like a rock. I only asked for the Ativan to help me sleep during the day so I could work at night. It was getting hard to sleep with the sun shining on my face, the dogs barking, cars driving by, neighbors being noisy, lawnmowers, etc. Then I started taking it more often because I was going through a break up, and was stressed out. If I could turn back time, I wish I had just worked through my problems without taking any anti-anxiety meds for sleep. Now I can't sleep more than 4-6 hours at a time because after a while, Ativan causes insomnia. (Which prompted me to have my dose increased a few months ago, making matters worse.)

    I know that I had SOMETHING wrong before I took the Ativan, but it was most likely recurrent mono. I know for sure that I have recurrent mono because I've spread it to other people. Maybe that in itself is due to having CFIDS, I don't know. But I don't identify with very many people on this site. I had a diagnosis of CFIDS a decade ago, and I was still swimming, lifting weights, dancing, playing racquetball, working 12 hr grueling shifts, and sleeping like a baby. I had occasional relapses, but I never fit the picture of being sick & tired ALL the time like most people with CFIDS. I was a fairly healthy person before I started getting medicated.

    Looking back, the withdrawal may have been going on for years. I was originally prescribed Ativan in 2004, but I rarely took it. That one bottle lasted me 6 years until I started using it more regularly in 2009. That was the year I subsequently missed 7 months of work for a "mystery illness." (Which was probably caused by or complicated by withdrawal symptoms.)

    I got my first refill in spring of 2010, was sick off & on, still not making the connection. I just assumed work was stressful so I was having PEM. Then I started having insomnia because I was having rebound effects from the drug, and building a tolerance for it, needing more of the drug to stay asleep, so I asked for an increase a few months ago. When my heart wouldn't stop racing even though I had my beta blocker increased (the same time I asked for the Ativan to be increased), it suddenly reminded me of my own detox patients that I deal with at work, and how their heart rates are always in the 120-130's, and suddenly it just hit me. I'm going through exactly the same symptoms they're going through. Now here I am, on a tapering schedule, trying to get my life back without throwing myself into withdrawal seizures.

    Not worth it. I wish I had never taken this medication.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good to see you have switched over to valium as i have heard its easier to withdraw from for the reasons you have mentioned. I dont know if its replacing one drug with another but i have seen others use antihistamines for sleep when withdrawing from benzos and arent suppose to be addictive. when u have a withdrawal plan on valium, i would be interested to see how u reduce your dosages and how often.

    good luck.
     
  7. faith.hope.love

    faith.hope.love Senior Member

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    Thanks! I haven't started the Valium yet. I see my doctor again on Wed. He actually recommended Klonopin, but I'd prefer the Valium, so I have to ask for it, and see if he agrees. It's not as potent, and it lasts longer than Klonopin (clonazepam). I've read that this is the easiest way. I'll let you all know how it goes.
     
  8. insearchof

    insearchof Senior Member

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    Thanks for sharing your story FHL. Very important to know. Hope things improve for you.
     
  9. faith.hope.love

    faith.hope.love Senior Member

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    Thanks! Doing MUCH better this week. My doctor started me on Valium 5mg, which is equal to 0.5mg Ativan. I took my first dose yesterday morning. I think it was a bit much for me, I was very groggy and slept 10 hours. (Though I needed that sleep! First good sleep I've had in a long time.) It's been 24 hours since that dose, and I've had NO withdrawal symptoms, other than a little bit of tightness in my neck, and a little bit of twitching in my arm. I'm currently pain-free and feeling exceptionally well. :victory:

    Prior to my appointment, I had been taking 0.5mg Ativan at bedtime (which, for me, is morning when I get off work), and 12 hrs later, I would take 0.25mg to get me through the rest of the night. I was going into withdrawal after 10 hours because it's so short-acting, it was horrible. With this Valium, I feel like it's still working 24 hrs later. I'm not even sure if I should take another dose this morning because I'm afraid of over-sedation. Yet, at the same time, I don't want to wake up sweating and shaking either. It's probably harder to reverse the withdrawal symptoms once it gets that far; I'd rather stay on top of it and be comfortable. I think I'll just take half a pill (2.5mg) of the Valium (off the Ativan completely now), and see how that works for me. My doctor said I could play around with the dose and see what works best for me. I'll see him again in a month.

    For anyone else that is thinking about getting off benzodiazepines... better to taper too slowly rather than too quickly. Don't make it harder on yourself than it already is. I'm lucky that I was on such a small dose, hopefully I won't have to worry about pills and times and schedules in the near future. I've already made a list of all the things I want to do when I'm healthy and fully recovered. Brighter days are ahead.

    :balloons:
     
  10. insearchof

    insearchof Senior Member

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    Hi FHL

    Sounds very promising. What you shared was truly shocking. You were very fortunate to have seen the association ....I hope things steadily
    Improve for you.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My cfs doc wont prescribe any other benzo other then valium, he seems very anti to xanax or klonopin etc but prefers the z drugs like zopiclone and zolpidem. Faith u seem sensitive to benzo's if 5mg knocks you, personally i would stick to just the night time dose and if withdrawal symptom occur maybe use 2.5mg during the day or split your total dose of 5 mg to 2.5mg twice a day, thats my 5 cents worth of opinions, lol. good luck, it sounds like your moving in the right direction.

    cheers!!!
     
  12. faith.hope.love

    faith.hope.love Senior Member

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    Thanks, heapsreal, that's exactly what I did (cut down to 2.5mg at bedtime), and that was working fairly well unless I overexerted myself. Anything that gets my adrenalin pumping seems to throw my immune system into overdrive and the withdrawal symptoms intensify. So someone on a benzo forum told me that I wasn't supposed to cut out Ativan completely, I was supposed to gradually switch over to Valium. So I tried their suggestion, cut down the Valium even more, and went back to using the Ativan during waking hours. BAD IDEA. It really messed me up. In just a few days, I already felt more dependent on the Ativan again, and all my withdrawal symptoms came back with a vengeance, including the insomnia. So I basically have to start all over. I took the whole 5mg of Valium this morning, and only got 4 hours of sleep. I just took another half tab (2.5mg), and here I am, still awake. It doesn't help that I messed up my sleep cycle after having some time off work. I think once I get back into my normal sleep routine, and stay away from the Ativan, and get enough Valium back in my system, I'll be fine again. Trial and error...

    By the way, for anyone that's having muscle spasms or migraines, and you want to avoid harsh drugs... try Slow-Mag. It's an OTC magnesium supplement. It really seems to help.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    on undcvr recommendation i have been using l-tryptophan for sleep 3000-4000mg before bed, it has worked really well, makes u feel nice and relaxed and has improved sleep and feel really good during the day as far as mood go's, i think it works much better then 5htp. Something that might help if trying to withdraw from benzos.

    cheers!!!
     
  14. faith.hope.love

    faith.hope.love Senior Member

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    Thank you! I will look into it. I'm just afraid to try any supplements at the moment. It makes it hard to distinguish where side effects are coming from. I also bought some melatonin, but I've been afraid to try that too. This whole experience has left me pretty gun-shy to taking anything at all. I can't wait to be off all medications! I think my brain fog will clear up as soon as I'm off this stuff. It has already improved greatly, but I have a ways to go.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    just do some google research on it, u will find its quite safe unless your are on antidepressants, then it may interact, but personally i think it works alot better for mood then ad's and no side effects too. Melatonin and other supplements wont have a rebound effect on you like medications but see a naturopath maybe, but it sounds like your getting over the hump and its getting easier. good luck.

    cheers!!!
     
  16. Freddd

    Freddd Senior Member

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    I'm very close to nailing a certain pattern of vary strong responses to various supplements (mb12, adb12, methylfolate, l-carnitine fumarate, etc) and has "tolerance withdrawal" as it is often called with benzos or at least intolerable side effects. Anxiety is oftenh present as a symptom. This appears to include many posting here on this page. There is a reasoanbly complex biochemical reason for this kind of reaction to benzos along with finding startup on some supplements to be intolerable. I believe I have identified it. I need your help with some more information to nail down the pattern. Thankyou.



    http://forums.phoenixrising.me/showt...554#post258554
     
  17. taniaaust1

    taniaaust1

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    Cause you also have POTS, I really suggest to not try the melatonin until you know exactly what the current dose of the other drugs you are taking are doing to you. Melatonin is known to make POTS worst (thou I myself dont find it makes my POTS worst..but many with POTS find it does. I think there may of also been a study done on it which found that as well).

    Thank you for sharing your story.

    Im glad you worked out the benzos were causing symptoms to you. (this isnt just an issue with benzos but all kinds of other drugs too.. Many may be on a drug which is giving them a symptom or making things worst).

    Best luck with things.
     
  18. faith.hope.love

    faith.hope.love Senior Member

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    Hi, this thread is over a year old! I just received notification of replies. Regarding the melatonin, I tried it one time and it made me nauseated, so it went in the trash.

    About the link, it just sent me to the main page. If you have specific questions, please send me a direct message. Thanks!
     
  19. taniaaust1

    taniaaust1

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    lol.. I keep confusing what year we are in, so didnt realise.
     

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