Time to ask for help….

[[Ca...]]

I have a similar story. I came down from 40 mg valium and  a half of a klonapin starting over two years ago at 1.37 mg a month. I immediately went into tolerance withdrawal. The first year was bad but the second year has been horrific. It's hard to get up; I stay up too late because I feel better after nine pm. I am walking. I updosed four mgs at 12 mgs and am working my way back down now. I dropped the taper rate to one mg a month as a microtaper cutting and weighing on the gram scale. I am very kindled from past rehab stays. I am at 12.6 now and will hold for a few days if i make it to 12 and then may drop to 5 percent taper rate. I have the same restlessness and I am polydrugged. It's a nightmare.I live with my husand and 36 year old daughter. I totally feel your pain. If you want to commiserate feel free to pm me.

 

[[Bu...]]

I forgot to say - please  PM me if you think it would help as I am someone who can relate to the fatigue, weight loss and frailty that you’re experiencing. 

[[No...]]

Hello @[Gi...], sorry for your suffering. I would make a 5% cut in your situation and see what happens in next 2 weeks. 

[[Gi...]]

Thanks for all the messages. It truly is a horrific situation and I’m so appreciative of the support here, you’re all a lifeline.

I'm barely managing, it feels as though I’ve fallen into acute at 16mg, which feels like such a long way from the finish line, terrifying. My son is only 15 so my goal was to try and be functional for him, but it looks as though that’s out the window. Is it a given that things will just get even worse if I begin cutting again? I just know I don’t feel anything when I take my 8mg doses, so it must be tolerance? Is there any chance cutting could improve things? Or is that wishful thinking? He has his exams this year and the thought of being as bad as I am now let alone worse and trying to be a mum is awful. 
 

If I cut (I only have access to 2mg tablets) could I just drop 1mg? It’s hard to get exact percentages as I can’t get liquid here. 
 

I feel like cutting is the only option now. I can’t believe I was functioning so much better Aug- Dec last year despite lowering fortnightly by 2mg. Things have got worse since January as I got really quite bad when I hit 14mg, so held for 3 months as per nurse advice, then they said updose 2mg and hols for 3 months, and it’s now I find myself in a worse state - zero function, and instead of experiencing interdose withdrawals, which was my norm despite twice daily dosing, I now feel permanent withdrawal and get zero relief or even feel a thing when I take my medicine. I feel like the only way out is through, but im terrified of how to be a mum and get through this. My husband is so over this too, I don’t blame him at all 😔 

[[No...]]

If your current dose is 16 mg and you cut 1 mg this is around 6% so I would do it. You can't go up, holding makes you worse so.. Adding AD is like gambling, you are in acute and most antidepressants make things worse first 2-4 or more weeks.. You don't mention caffeine, alcohol and cigarettes. If there are any maybe try to cut them and see how it is going, this will be much better from antidepressants. And move, step by step but move.

[[Gi...]]

Thanks so much North. I don’t drink alcohol or caffeine, and I don’t smoke. Like you, I don’t think an AD is the answer. It’s not an option for me.

Im just scared to cut and make things worse. I wonder if the 6 weeks of antibiotics I had to take in May/June have worsened things and ‘maybe’ I might stabilise if I hold on longer? I had 3 weeks of oral doxzycline then 3 weeks of high dose ceftriaxone IV - both specifically used to cross the blood brain barrier due to a neurological infection that had to be treated. Don’t get me wrong, I was not in a great place before the treatment, but nothing like the situation I’m in now after finishing the treatment. I only completed the course end June and have unraveled since, it’s been since then that I’ve felt I get no benefit from my doses. I read on Maudsley that brain penetrating antibiotics can cause severe disruption and sensitivity due to gaba binding. Part of me thinks ‘if I hold on I may stabilise’, but the other part of me thinks I just need to get on and do this, but I feel so incredibly weak and exhausted I don’t know if my body can take more. So I’m flip flopping with decision making feelings like I’m in acute, either due to antibiotics, tolerance or both. I just want relief. I don’t know if cutting or holding is the best option. The antibiotics have created an elephant in the room, but could also be totally irrelevant. I’m not sure if you or any other buddies have any experience or knowledge of these things or can advise? I feel like I have to do something, anything, as you say ‘move’. But I’m frozen in fear about the consequences of making the wrong decision, as I did that early in my taper by going too fast. I thought I was doing well, but then wow did those cuts catch up. I’m trying to learn as I go, the psychologist in me is a research hound, everything I read about akathesia says don’t cut…but I don’t know if what I have is definitely akathesia, so many definitions of it it’s hard to know 😔

Edited July 26 by [Gi...]

[[No...]]

Obviously here are some medical issues. You are treated about neurological problems with antibiotics for long period and maybe high doses? And these antibiotics can cross brain's blood barrier? What are your doctor thoughts about this? What was your condition before this treatment? Did you benefit from doses? It's difficult to say what is right, you should make your own decision to hold or to cut.. Do you have any records about your symptoms for last month after antibiotics? You are feeling generally worse but are there some improvements, or windows and waves in some of your symptoms?

[[Gi...]]

Hi North,

I keep a symptom tracker. I hadn’t been doing as well all of this year compared to last, hence the hold at 14mg all through Feb/March then the small updose to 16 mid April. My symptoms were very troubling, but post antibiotic therapy (which commenced mid May into end June) have definitely got progressively worse. Prior to antibiotics I was definitely getting ‘some’ relief from doses, but now I feel absolutely nothing when I take my doses, and my baseline is so much worse. It’s strange, as during antibiotics I never really noticed much change, it was shortly after finishing the antibiotics (a few days) things started getting much worse, and have continued to decline for the last 4 weeks. 

Yes, both antibiotics are effective at crossing the blood brain barrier, as the integration was in my nervous system, they found it via lumbar puncture. The doctors aren’t much help, they know the infection is gone, so feel these symptoms are ‘benzo’ related, and I don’t have a psychiatrist to discuss the benzo/antibiotic potential issue with, as I only see a Nurse monthly who writes my diazepam prescription, as soon as I decided to come off diazepam they sent me to my local addiction services team, but they have little to no knowledge about the drug. I’ve had to really figure it all out myself. They have so many challenging patients within addictions they aren’t really set up for proper benzo tapering. 

All of that said, I was definitely having a much harder time this year before the antibiotics, hence the holds and updoses, I never had to to do that between Aug-Dec last year when I came down 35-15mg. Swore I’d never hold, never updose, but things got really difficult. But I was definitely not as bad as now. Hard to know if tolerance was catching up anyway and antibiotics have pushed things over the edge. 

I really appreciate your input North, you’re being incredibly kind and supportive, I feel much less alone today. Are you benzo free or still tapering? 
 

Edited July 26 by [Gi...]

[[Gi...]]

I forgot to answer part of your question North, sorry, since end June to now, no windows or slight improvements, just progressive decline. No slightly better days or partial days like I’d get before that. It’s full on survival mode only - showering and trying to force feed myself. I guess it feels like acute, but I don’t know 

[[No...]]

It is so complicated situation. You don't feel worse or better when take a dose, nothing? I am not benzo free, work in progress with many mistakes so completely understand you when it comes to take a decision.. I have some experience with antibiotics before my taper, few times after treatment (5-7 days oral drugs) I was a mess for a month and wasn't even in benzo tolerance yet. Last one was before 2 years from ear drops with ciprofloxacin and I have constant burning feeling in my ears nerves from 2 years. My point is that maybe you need time to calm things down, but no one knows if holding will help. The whole damn thing is hit and miss. 

[[Gi...]]

You were floxed, I’m so sorry. Fluroquinalones are notorious for damage. They are black boxed now to warn people. From reading here, people seem to have mixed reactions to antibiotics whilst taking benzos, it’s all hit or miss. I agree, it’s hard to know whether to wait it out and see if anything improves, or assume I’m in complete tolerance and taper. I feel nothing when I take my doses now, I’m miserable 24/7. I agree, it’s all so hit or miss and everyone is different. 
North, where are you in your tapering journey? You’ve been so kind listening to me, I’d love to understand your story and how you are doing, hopefully I can support you back. Are you tapering in tolerance? I hope you’re doing better than me! 

Edited July 26 by [Gi...]

[[Pa...]]

Antibiotics are life saving medications but they can sure do a number on us. And I know fluoroquinolones are now recognized for what they can do to us but I saw the same thing happen with penicillin to my friend so I know its real.

I wonder if you can or will settle in time but how long do you give it?  

[[Gi...]]

Pamster I know, it’s an awful predicament. I know we all have a different measure of stable, but I’m fairly confident I’m nowhere near it. However if it’s tolerance causing this, what to do? 😔

[[ri...]]

You mentioned being on Antibiotics (kills off good & bad bacteria). Our gut does play a huge part in our mental health and I can only imagine this to be even more so when trying to taper down.

I know it's hard when you don't have an appetite but Kefir (plain not flavored) is great at replacing a TON of probiotics. I make a smoothie daily with about a 1/2 a cup of Kefir - or you can just do a shot of it it's basically like greek yogurt but in liquid form. I've also poured it over a bowl of fruit. 

Greek yogurt works well too (plain) but Kefir (plain) has a ton more probiotics.

Probiotic pills don't work well if at all

I know it's the last thing you want to think about but could help over time. Trust me I had to force myself this morning cause I have NO APPETITE at all but got a smoothie down. Now that I'm tapering I nearly cry at the thought of eating but the Kefir I force myself to.

It can also help with constipation if this is an issue.

Hope you feel better soon.  

[[PE...]]

On 25/07/2024 at 17:34, [[G...] said:

Do you think trying an Anti depressant or SSRI is the answer on that basis? That if my mental health is now the issue, taking another medication would allow me to continue with my taper successfully? I’d do anything to get some tiny part of myself back, I’m terrified of other medications based on things I’ve read about polydrugging with psych meds. So have been extremely resistant to this and just hoping to ‘stabilise’. I just don’t know what the right/wrong thing to do in this scenario is. I’ve just always thought more meds aren’t the answer. But maybe it’s got past that. Or, rapid taper, jump and take the pain knowing at least I’m off the drug. The akathesia is so bad I’m scared to do that though. Such a horrible scenario, I feel trapped  x 

Hi.

Yes you could try an AD or something else. BUT it can get worse from it, or not have any effect at all. ADs are weird that way. I think i was helped from quentapine, the akathisia went away. But for others its the total opposite. 

Take care.