Neurological issues starting out - please pour in advise. I'm feeling so lost

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I had my consultation call with Dr.Horowitz today. He heard me out and said that 'maybe' a taper won't help my 'brain injury' symptoms.

He however proceeded to advise me on how to go about a slow taper.

A bit about me again. 15 years on Ativan, currently at 3mg, bedtime.

Took antibiotics in Sept'23 and started experiencing some issues since then. After extensive evaluation by doctors, the neurologist says my issues are because of prolonged use of the benzo.

My main discomforting symptom is constant lightheadedness which has me home bound and which has recently intensified. I get repeated sensations like my head is reeling. I used to feel that after I take my Ativan, this sensation subsides. But of late, I think that because I lay down in bed and fall asleep, I'm not aware of it until it's morning.

Other symptoms:

Double vision in bright light 

Muscle twitches

Involuntary finger and toe movements

Numbness in tongue at times 

Occasional paresthesia in hands and feet

A new anxiety when I wake up in the mornings and a tight stomach

Emotional blunting

I'm quite a bit worried that Dr.Horowitz  mentioned I may not experience relief.

Has anyone had similar experiences?

Given the nature of the taper, it's not something I can randomly experiment with.

I'm not even sure about what I'm typing on in here anymore.

I'm in India and tough luck finding a doctor who agrees to help with a slow taper. If anyone knows of an experienced doctor who can help me out on a phone consultation, anywhere in the world, I would be grateful.

My above symptoms are intensifying every few days.

Pls advise.

 

 

 

Edited April 30 by [...]

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@[Li...] @[Re...] @[Pa...] @[Co...] @[wi...] @[ns...] @[PE...] @[...] @[Ka...] @[je...]

[[PE...]]

Hi @Nlav

I know you been worried about starting your taper and your reply from Dr. Horowitz didn't make it much better right? I think he's right though. Both about the damage allready done, and a slow taper.

The problem as you say is to find a prescriber in your country that agree to a slow taper. Sure it must be one!??

My own experience with making a taper while having withdrawal symptoms is bad. It's a tough situation. 

Take care

 

 

[[WU...]]

[[Bo...]]

I am sorry. 
these could be symptoms of tolerance though so please keep your hope.

not sure if you’re dosing the 3mg once a day or have it split out over 3-4 doses ? If once a day splitting out over the day can help interdose withdrawal symrolms which I am sure Dr Mark probably already assessed.

* I see your msg now says you take once at night and things calm- this is likely interdose issues playing a role. Splitting up your 3mg to take over 3-4x a day might really help you. I know you said after antibiotic things worsened but you might also have interdose and tolerance coming into play bc you’ve been in for 15yrs once a day. See how maybe splitting your dose for more coverage throughout the day goes. Did mark mention this? If not see what libertas thinks , she’s wonderful!

sending hugs and Dr Josef Witt Doerring is the only other one that is super knowledgeable but think you need to talk thru getting a taper plan in place, addressing any interdose issues, seeing if your genetics maybe show an issue with Ativan snd maybe a longer acting benzo might be worth risk of switching to if this is last resort to then taper from.

 People have been having very difficult situations here so please don’t panic.

hugs 

Edited April 30 by [Bo...]

[[ns...]]

[[Ca...]]

Hi, nlav

I'm sorry you didn't get more from Horowitz. I spoke with Dr. Josef from the Tapering Clinic who basically told me I have neural damage and that's why I have such acute withdrawal despite a slow taper. I took a break from tapering hoping to stabilize, or at least that's what another benzo wise doctor suggested..it has done nothing and my symptoms are worse. And I have to start my taper again. I guess if you can find someone to prescribe and have someone here help you make a taper plan, you may as well get on with it. Have you checked your blood pressure to see if it's low? That could be causing lightheadedness in which case you can bring it up with drinking more water and salting your food. We are all in this together.

[[Ca...]]

Things will get better for you. Sometimes the indecision period is worse than the implementation.

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7 hours ago, [[C...] said:

Things will get better for you. Sometimes the indecision period is worse than the implementation.

My blood pressure is fine Carol. I get chest discomfort and had it this morning. I woke up thinking of the call and was miserable. It's a hot summer day outside. All I feel like doing is staying in bed and moping:(

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11 hours ago, [[n...] said:

Hi nlav, 

Sorry to hear your consult was a bit of a disappointment. Sounds like he didn't put much energy into your case.

We talk about you splitting your doses.

I  know I would start Tapering to get to a 3 doses a day.

I don't agree with horowitz in the least!

Even with all my symptoms, there are many of then that are lessening, they are easing. 

I can feel the changes. I know I have recently posted about these horrid symptoms and hoe they are so disturbing, but honestly I'm doing better! The fluid retention is quite new, the brain shaking is better now, the internal tremors are gone actually. 

The numbness is better, it's psin from my back causing this.

I don't get worse symptoms until I take the dose. This always moves me to thinking of jumping off. That's the toughest part. I'm still not down low enough for a jump. I will get there and I can tell that the symptoms will eventually subside abd eventually be gone!

Here's the point.

Until you start your taper, your not going to heal. There has to be a point where you decide its time and just do it!

Make a taper plan. Get everything together in advance as much as you can to plan ahead.

You'll get help here for a taper strategy. Once you have it, you can at some point start a slow process  of splitting your doses. 

I know your miserable nlav, but you've got to start somewhere. 

I think your consult today is a hint that it's time.

We've spent thousands trying to find answers, alternatives but  always comes back around to wd.

I'll be here as muchbas I can for you. All of us will be here. 

You'll have an outlet here, so I think while you have this, take advantage of it and get your taper started ok

I'll be praying for you as I'm sure many will be also. 

You can do this nlav, you're tougher than you know trust me!

Thanks nsindy. You have always been there for me like a rock.

Dr Horowitz suggested a daily liquid micro taper for me from ativan. 

We have to find out if this is available. 

I can't begin until June.

My husband travels next week for the graduation ceremony. I'm not able to go see my little baby walk and get his degree. I feel so hurt and miserable about this. 

[[Rh...]]

I’m confused, did he say you won’t heal??? Or that a taper won’t help until you’re off???  Because I tend to not agree that you won’t heal from this eventually.  I have seen horrible stories and people have healed and recovered so please don’t let that conversation worry you and set you into panic!

Do you ever listen to Baylissa Fredericks or go to her website?  She has some success stories of people who were SO sick and are better…cling to those stories.

I also agree that you might be better off splitting your doses up throughout the day.  Even when I switched to valium I had to dose 3 times a day to avoid interdose wds.

Make the calls to find a provider who will work with you or start a liquid taper yourself and take that first step to healing.  I wouldn’t jump straight from pills to liquid tapering, your body will need to get used to whatever change you make before you actually make a cut though.

it’s the fear that leads you to indecision. We’ve all been there.  But you can do this!!!

Edited May 1 by [Rh...]
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[[Rh...]]

Sorry me again, I also wanted to mention that I sympathize with your story because I have a crap load of neurological problems and doctors prob would think I have MS or Parkinson’s or something like that.  I know it’s WD because it all started during my tapers and when I came off…so I have to believe in healing and have seen small successes and I know you will too!

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@[Rh...], thank you for all your inputs. I will keep them in mind. I will work on splitting the doses. Everyone here is suggesting I do that first. I will meet my neurologist certainly before I start with the actual taper. Thanks for all the support!

[[re...]]

I think you should just GO FOR IT and make a small reduction and see what happens.  And I definitely am in agreement with everyone here on splitting your doses. Maybe after you get the splitting stuff organized then just start taking a small reduction off one of these doses. 

This will help you majorly I feel. Ativan is nasty stuff. They all are, but this one is seems real tough to me. I never could tolerate it at ALL. 

[[Rh...]]

[[Ca...]]

I currently split my 14 mgs of valium into mid day and evening doses. But I was tired of waking up too early so I started taking two mgs of valium in a divided dose one half when i woke up at five am and the other half around two pm. I need to put that two mgs back in the evening dose; valium has such a long half life I don't think it needs to be split more than twice a day. My taper was updosed two mgs two months ago and it's that extra two mgs that I am not using properly. I also have to restart my taper and am really afraid of doing that, not that I've been much better with the updose or with holding. Dr Halligan told me to hold until I was stable. I don't think that's happening. She also told me to taper at either 2.5 or 5 percent. Another consultant I have worked with tells me I will never get off that way and encourages me to stick with the one mg microtaper a month I was doing.  

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Thanks @[Ca...], @[re...], @[Rh...]..... I'm trying to get started on the dose split. Due to some family travel, it will be a good 3 weeks or slightly more to begin the actual taper.

Dr Horowitz looked at my symptom list and said i may not have relief even on stopping the benzos. He said i have brain damage.

Some symptoms being increasing lightheadedness,  double vision, muscle twitches, involuntary finger and toe movements.

The lightheadedness is increasing. And i feel I'm slowly beginning some balance issues. I'm quite afraid. @[Rh...], since you mentioned neurological difficulties, do you think the ones i mentioned above would resolve in time? I'm badly in need of some assurance. Whenever I feel the reeling sensation, I just sit down and cry 😢 

Would Baylissa know anything about this? 

[[Rh...]]

Edited May 2 by [Rh...]
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[[Sw...]]

I really don’t understand how a doctor who met you via telehealth could say anymore than “I don’t know how things will go ahead with your healing.” 
 

If what you’re saying is true, that he told you point blank “I don’t think you can heal from this” then I am in SHOCK. The symptoms you’ve mentioned compared to others are actually mild… not to claim you aren’t suffering, of course it’s your own story playing out here and is certainly suffering for you…

but some people have listed 40+ symptoms and overcome them. Tell me what makes you different from all the people who have healed? I mean based on actual data of people healing how could any doctor give any input other than “I am not sure.” ?

I just hope others don’t take your words and choose to apply them to their own difficulties currently. We give doctors way too much power to influence our thinking. Studies show placebo effect is powerful. If a doctor tells you you’ll be okay then you actually start to feel healthy. If a doctor tells you you’re sick you start to feel sick. 
 

I hope this post doesn’t mislead people to thinking any person could make such a judgement. 

[[Rh...]]

4 minutes ago, [[S...] said:

I really don’t understand how a doctor who met you via telehealth could say anymore than “I don’t know how things will go ahead with your healing.” 
 

If what you’re saying is true, that he told you point blank “I don’t think you can heal from this” then I am in SHOCK. The symptoms you’ve mentioned compared to others are actually mild… not to claim you aren’t suffering, of course it’s your own story playing out here and is certainly suffering for you…

but some people have listed 40+ symptoms and overcome them. Tell me what makes you different from all the people who have healed? I mean based on actual data of people healing how could any doctor give any input other than “I am not sure.” ?

I just hope others don’t take your words and choose to apply them to their own difficulties currently. We give doctors way too much power to influence our thinking. Studies show placebo effect is powerful. If a doctor tells you you’ll be okay then you actually start to feel healthy. If a doctor tells you you’re sick you start to feel sick. 
 

I hope this post doesn’t mislead people to thinking any person could make such a judgement. 

That is what I was worried about and it also scared me because I’m having TONS of neurological and other symptoms and if he’s telling people “they might not heal” then they can cause a lot of harm in these communities.

I understand he’s a “leader” in this subject, but if he really said those words then he’s being very misleading…makes me so upset, especially for those who have very vulnerable minds and are suffering greatly.

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I have mentioned above...he thinks I have brain damage that the taper may not help with.

I'm quite stressed out by what's happening to me and not finding a supportive prescriber for myself. I waited 4 weeks to get onto the call with Dr.Horowitz 

I absolutely have no energy to interpret his words further. It's my first time having such a major issue to battle with.

Thank you in advance for understanding 🙏 

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He discussed my case with me. I'm sure this doesn't extrapolate to everyone else who is in this benzo predicament.

[[re...]]

I am a firm proponent of Horowitz, but I don't think he should telling you that "you have brain damage". That is odd if he really said that and makes me question him.  Maybe he meant 'temporary' brain damage. 

[[re...]]

I can almost bet your benzo brain is probably not understanding him correctly. I really hope this is the case.  

[[re...]]

Nlav:

 

You have to start to TAPER first before ANYONE can make that kind of bold statement. I think once you start tapering your brain will be fine. Tolerance withdrawal is all it is pure and simple. Not brain damage for god's sakes. You are still on a high dose. 

I think you have dysregulation not DAMAGE for god sakes.