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Anyone experience weakness as a primary withdrawal/tolerance issue?


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Hello All. I just joined today. You can read my story in the introductions section. My main issue is a sensation of weakness, sometimes generalized, but worse in my arms and hands. It comes and goes but has been particularly bad over recent weeks and is threatening my livelihood as a writer when I feel like I can barely type! I finally see that this was a sign of tolerance from way back. I've been on benzos for 11 years but never increased dosages so I guess I didn't recognize the signs of tolerance.

 

Anyways, it doesn't seem like this is very common so if anyone has experienced this as a major issue (and recovered!), I'd love to hear from you. Also, this week my other issue is a muscle spasm in my neck upper back. I know this is more common. What works? Has anyone had success with magnesium? Thanks for any suggestions.

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Hi bubbles. I wanted to respond briefly and let you know that upper body weakness is also my primary symptom. Very scary, indeed. I intend to give you more details but it will probably be in the morning. You are right, there aren't many people who mention this symptom.

 

I'll write more later

Jeanie

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Wow Jeanie. You sound like me w/the muscle contractions, vibrations and hand weakness. Looking forward to hearing more. (And to think I was cutting my nightly dose of Ativan once per week at .25 mg! Can't believe I listened to that doc. Things are going better...except for this weakness thing since switching to Valium.) How are you doing since your Sept posts? I'm in So Cal also...
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Weak with brain weirdness today, but keeping positive thoughts. Thanks for asking! You are so right that it's important to stay positive. I notice when I titrate down I become more obsessive about my sx. I'm working on my awareness about this and changing my thought patterns more consciously. I say out loud, "Thoughts!" and re-direct myself to a task or finding gratitude for something or compassion for myself  :)
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Bubbles,

 

Welcome to BB.  I think the muscle weakness hits people in different areas.  Almost in their weak areas.  Don't forget, if the symptoms get too tough, just hold at your present dosage until you feel better.  Good luck.

 

Popcornlady

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Hi bubbles,

Sorry I haven't written back sooner. I don't know if our situations are similar. I am dealing with effects from cipro that I took eighteen months ago. Also, baclofen immediately after that, followed by ativan. I think a lot of my symptoms are because of the CNS being fried by the drug combo. You may want to explore whether or not you've taken quinolone antibiotic even up to a year prior to the benzo.

 

I am down to .059 Ativan and it seems with each minuscule cut my symptoms worsen. However I am trying to power through so I can eventually start the healing. It seems, among other things, my vagus nerve has been affected possibly causing the chewing, speaking difficulties and the extremely weak neck. I actually had a slightly abnormal emg showing some wrist damage one year ago. I can hardly lift my arms, but grip is still very strong. And I walk a mile each day, so lower body is ok. My motor skills are poor and there is muscle wasting on both hands.

 

I don't want to scare you though. I feel I will eventually heal..... I just need to get off of the benzo!!

Jeanie

I don't know if you have any questions for me, but I would be happy to answer them.

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Thanks Popcorn Lady for the encouragement. It's hard to know when to push forward and when to wait and prolong your misery sometimes! REALLY don't want to have to go back up as I've been there, done that too many times over the last decade.

 

Hey Jeannie--I've had fluoroquinolones before, but more than a year ago. I knew I was "allergic" to them but not that they were contraindicated with benzos until I read this board. (Seriously? Why don't docs  and pharms know this?) I have a generalized weakness in my body so I only take short 15 minute walks on good days, but it's the arms and fingers (right hand worst of all). Today was a banner day cuz I could fold laundry, but the dishes in the sink are looking kinda heavy. Two weeks ago (before I cut 1 mg), I was cooking, cleaning and working. I hope this settles down soon! I think I'm going to switch to a liquid titration for smaller cuts.

 

Oh...here's what I know about the vagus nerve: it regulated everything in your nervous system so when it's not working, neither do you. My functional neurologist has me gargling 25 times a day as it activates the vagus nerve manually. Can't tell if it's helping though.

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Thanks for the tip on vagus nerve stimulation. I might try it!  Wish there was a way to communicate outside this forum, but I don't think there is. By the way, I am also in the creative field: graphic design. Thankfully, I am home- based and can still work at the computer. Used to do illustration too. But now, can barely sign my name!!

Jeanie

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Hi Jeannie,

 

I'd like to send you a private message but can't figure it out with my brain today! You might be interested in learning more about this neurologist I'm seeing. He specializes in restoring neurological function w/out meds or anything invasive. It has it's pros and cons and frankly, I can't say it's helped with withdrawal. BUT I firmly believe that once I'm off, if anyone can help speed recovery, it's him.

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Yes...unfortunately the PMs have been disabled.

What is the physician's name and where is he located?

i'm a ways off from that type of treatment, but it helps to know there is someone offering alternative ideas.

 

I am severely feeling the a cut i made 24 hours ago. Each cut seems to make me feel weaker and more disabled. I wonder how much of it is the Ativan and how much is Cipro? But I think at this far out from Cipro (18 months), it may be all lumped together.

I am waiting to hear from a doctor in Irvine who has expertise in this.

 

Do you have lots of internal vibrations too? it seems when they are at their worst, i am at my weakest.

 

Hope you are having a good day today....

jeanie

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Well, that's too bad. I'd like to chat. Hmmmm....

 

Funny that you should mention the internal vibrations. It's my new most annoying symptom! I notice it most when I am sleeping. Wakes me up constantly. I WAS sleeping okay but then would awake with the vibration that would dissipate. This week it's an all night long kind of deal.

 

This doc is in Palm Springs. (Are we allowed to post names?) He is expensive, requires lots of lifestyle modification and it's slow. BUT it's natural and he sees people with very complex neurological issues with great success. He essentially rewires your brain and remaps your organs using brain-based exercises and chiropractic techniques that are not AT ALL like others you're familiar with. Sometimes I can feel certain parts of my brain firing when he does them. Medications get in the way of progress. The first week I saw him my scoliosis and posture were 90% improved and my vision improved so much that I had to go back to glasses from five years ago. I've also had windows while titrating down when I felt pretty darn good.

 

In fact, I'm having one right now for the first time in two weeks. Let's hope it lasts! When I emailed him with my severe weakness, he gave me very specific neurological exercises to do to impact my midbrain (which is my central problem...it's very weak and gets weaker titrating down, which is not to say this would be your or anyone else's central problem so my exercises would not be recommended for you, except gargling can't hurt!) Anyway, I started the exercises yesterday and definitely felt my brain firing each time, but they also gave me a temporary headache so I hoped I wasn't over doing it. (I have had "crashes" in the past where my brain couldn't handle it, leaving me bedridden for several days. Not since early treatment though.) Today after the second exercise, I felt mentally clear, my mood improved and I went for a walk. Fingers crossed that it sticks!

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I had terrible weakness during tolerance withdrawal. It was so bad I could hardly stand. It came and went though. I also had it bad in my hands. I was tested for strokes and certain types of migraines that cause weakness. Since I started my taper in August, I have not had any more weakness episodes. I hope yours improves as you taper as well!

 

Shew

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Shew,

That is the best news I've heard in awhile! I would've saved myself many years of trying thyroid/adrenal treatments and alternative therapies if I would've recognized this as tolerance withdrawal almost five years ago!

 

Mine comes and goes too. Mine is very bad in my hands. In fact, some of my fingers over the last year have slowly started to stiffen so that I can't fully bend them or make a fist in one hand. Did you have anything like that happen? And if so, did it resolve? I'm really, really hoping that my fingers normalize once I heal. So far it's been a slow cummulative sort of thing which is disconcerting as a writer....Today is a better day though!

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Glad to give you some hope, Bubbles. It is amazing how much better I feel on so many levels since starting my taper. I didn't have the stiffness in my fingers, just extreme weakness. I couldn't even open a ziplock bag at one point. Scary! Maybe use the search field to see if you can find anyone else who experienced stiffness. It's amazing how much damage these drugs can cause. They are truly poison. I hope you feel better and better!

 

Shew

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Hi Jeannie—Re: the internal trembling feeling, you might want to go see my latest post on "What's up with internal shivering feeling?" Talked to my doc. He doesn't think it's the kind of thing you can or should wait out. Wants me to re-up my dose. Depressed!!
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Bubbles. I would think very long and very hard about that advice. Please see what type of response you get on the forum!!  Updosing is highly frowned upon. It is not a possibility for me. I had the internal vibrations prior to the benzo... Either from cipro or baclofen. They are worsening as I lower my Ativan dosage. They are quite common. I do not think they are related to tardive dyskinesia but that would take a little Internet research. PLEASE check it out before you make any decisions.

 

Jeanie

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Thanks for the caution, Jeannie. I'm not suggested they're related to Tardive Diskenesia, but I do trust this doctor's expertise (as far as I trust doctors) so when he warns me that my brain is overtaxed at my current dose as much as hates these benzos, I do sit up and take notice.

 

That said, I'm going to try the Taurine and likely stick here for a bit and see if things stabilize. On the bright said, he did say most definitively that my finger stiffness will recover once I am finally off. I would be interested in hearing people's experience who have updosed.

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  • 4 weeks later...

Hi Jeanie:

 

I hope that you are having a good day today. I am microtapering off 0.5mg K and it is rough. I had a course of Levoquin in January and I think it started the problems. I also have to take prednisone and have been on Lyrica and various ADs too. Please e-mail me the info about the Irvine doctor.

 

Thanks so much!

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Hi iamquitting,

I have not had contact with the doctor yet. His name is wadie najm. I understand he has many complex cases of all types ( as mine is) and is quite overloaded. Unfortunately, there is not much that can be done for quinolone toxicity as I'm sure you know. It is certainly exacerbated by benzo withdrawal and my symptoms/ taper are brutal and frightening. I requested a phone consult with him. He hasn't responded and I've been too ill to pursue.

 

Let me know how you make out if you do wind up seeing him.

Jeanie

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Thanks sweetie. I read your post yesterday but didn't get to answer you before the the software glitch. I was actually very happy to hear that you didn't get hit as hard as me by the drugs.

 

It is pretty discouraging to be doing everything I can to heal, but so far the drug is winning. I am waiting to hear from a holistic doc right now ( friend of a friend who will actually make house calls!). He doesn't know about cipro toxicity but is willing to learn. Also... Don't know what he knows about benzo w/d. It's a big step for me as I've stayed away from docs for a year now. Not that much can be done other that get off of the Ativan and wait to heal.

 

Glad to hear that you do get windows and have not been hit with the progressive FQ stuff. I wonder how bubbles is doing? (she started this thread)

xo

Jeanie

 

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Thanks Jeanie:

 

Since I took the levoquine in Jan (sporadic benxzo at that time) and started tapering in July, do you think all my sx (and they do seem to be intensifying as I go lower) are probably from the benzo? I do think the levoquine may have started sx of tolerance with the benzo but, I am not sure how to tell if I am having flox sx or not. How could I, do you think? Hope you are doing better today. Bubbles is feeling better and is slowly tapering down now.

 

IAQ

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I can't interpret your symptoms. I had another 'benzo floxie' tell me that symptoms of the two drugs are very similar. 'Quinolone Antibiotic Toxicity' (The Flox Report) is an in depth document that you can  google for more information. but I have to warn you, it is quite frightening and geared towards severe reactions. most people do seem to heal eventually though.

 

I have heard of an increase in symptoms with very low dose Ativan, as well. So my fingers are crossed that that's part of what I'm experiencing.

 

Jeanie

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