Clonazepam (Klonopin) stops my symptoms almost completely

[hapl808]

someone who is seriously sensitive to meds what I’m concerned about is what if after a few months on them you start to get unbearable side effects and then can’t come off them?

This is my concern. There are things I'd be intellectually interested in trying to take daily. Benzo, SNRI, beta blockers, CBD, Ritalin, Modafinil, etc. But when my condition is so fragile that a food that doesn't agree with me can throw off my whole system, what happens if I take a beta blocker for a few weeks and after some initial improvement it totally crashes me and then I find I'm even worse when I come off it.

People without severe forms of this illness don't understand our occasional reluctance to try things. "What have you got to lose?" Well, until I'm ready to check out, I have a lot to lose. At each level that I thought I was at the bottom, I've found I'm actually only at the beginning stages of the inferno. I have no caretaker and luckily can still feed myself (not so much bathing anymore, but wipes work fine). It's not fun, but I can't imagine what I will do if I can no longer keep myself fed, etc.

 

[Wayne]

Hi @xebex -- I recently made a post on a tinnitus forum on a supplement I just started taking that has softened my tinnitus somewhat. I was asked a question about it, and answered it (text below), which I think is relevant to your concerns about benzos. The supplement is:

Source Naturals Serene Science, GABA Calm - Supports A Calming Mood, Quick Dissolving Orange Flavor - 120 Lozenges

DebInAustralia said: ↑​

​

Why do you think this supplement helps your head tinnitus? Any theories?​

​

Hi @DebInAustralia -- I'm assuming because of the increase in GABA levels in my brain. GABA is a calming neurotransmitter, and since this supplement GABA Calm apparently increases GABA levels, it's "somewhat" similar to benzodiazapines. Benzos also increase GABA levels, albeit artificially, and sometimes at great cost and very high risk of dependence. I seriously doubt the GABA Calm product would present such risks.​

​

The GABA Calm effects would also seem "somewhat" similar to what alcohol does in the body, namely increases GABA levels, and cause all kinds of activities and reaction times in the body to slow down. I've always assumed--though not certain--that GABA is the main neurotransmitter that is modulated by the vagus nerve. The vagus nerve orchestrates the function of the entire parasympathetic nervous system, whose primary function is to calm the body and nervous system down, especially after traumatic events.​

​

I've been experimenting with this product, taking anywhere from 1-3 lozenges a day. At this point, I'm not sure I need more than one, as I first noticed a softening of both my head and ear tinnitus the very next day after taking only one. At first I didn't make a connection, until I remembered later on I had taken it. Since I'd never taken one of those before, and since it's quite rare for me to experience such a noticeable reduction at any given time, I'm pretty convinced there's a direct correlation. Especially since I've not returned to my previous higher baseline levels.​

​

It's possible this worked well for me because my GABA levels were too low to begin with. There's likely people with tinnitus that already have GABA levels that are optimal, and they may not notice the kind of effects that I did, or somebody else might who have abnormally low GABA levels.​

​

As an aside, I suspect this could be a very helpful product for those who are going through benzodiazapine withdrawal. And a good thing to have on hand if a person thinks there's a possibility they may go through a benzodiazapine withdrawal process in the future. @linearb.​

 

[xebex]

@Wayne thanks for your kind and helpful comment. I think I will try thats supp. I have heard it doesn’t cross the BBB but what if our BBB is compromised? I’m pretty sure mine is and maybe that is also why it works In Some people.
I take theanine, mag glycinate NAC and muscle relaxer and that seems to help a little bit only so much as to relive some of the horrific suffering - the feeling of my brain folding in o. itself but it. Doesn’t really add function.

 

[xebex]

This is my concern. There are things I'd be intellectually interested in trying to take daily. Benzo, SNRI, beta blockers, CBD, Ritalin, Modafinil, etc. But when my condition is so fragile that a food that doesn't agree with me can throw off my whole system, what happens if I take a beta blocker for a few weeks and after some initial improvement it totally crashes me and then I find I'm even worse when I come off it.

People without severe forms of this illness don't understand our occasional reluctance to try things. "What have you got to lose?" Well, until I'm ready to check out, I have a lot to lose. At each level that I thought I was at the bottom, I've found I'm actually only at the beginning stages of the inferno. I have no caretaker and luckily can still feed myself (not so much bathing anymore, but wipes work fine). It's not fun, but I can't imagine what I will do if I can no longer keep myself fed, etc.

I hear y’a I’m the same, also having to wash with wipes and currently unable to make food luckily I have hubby. Must be so scary not to have a carer. All I can think is to make double your food and stockpile frozen meals.

i recently had a down turn in function due to use of a steroid cream on some skin issue. I have used the cream before abiut a year ago and was fine but this time my body/brain decided no. Similar thing happened last September when I tried a hypoallergenic probiotic that apparently wouldn’t t cause any problems. Sigh.

 

[judyinthesky]

@Rvanson i agree with your sentiments entirely however as someone who is seriously considering taking benzos but also someone who is seriously sensitive to meds what I’m concerned about is what if after a few months on them you start to get unbearable side effects and then can’t come off them? Then you’re stuck in hell either way! There is also the consideration that as tolerance builds you end up needing an amount that could quite become lethal. Plus as someone mentioned sometimes doctors just decide to pull the plug on Your prescription and then you are truely effed.

I have literally no problem in being addicted to something I need that works. But being addicted to something that’s isnt working for me and could kill me is completely different.

man I have TRIED so many times to take cannabis and every time it makes me worse I have no idea why. I can’t drink alcohol at all. Ritalin helped for a while then become unbareable. I need to know the risks so I can make educated decisions for myself. My god I wish I could just take benzo and get on with my life!

I'm extremely sensitive to anything and benzo is the only thing that helps. I didn't have to go up very much so far, same dose since months, I couldn't eat otherwise, but keeping it as low as possible. Cannot do cannabis either. No alternative ever worked.

 

[xebex]

I'm extremely sensitive to anything and benzo is the only thing that helps. I didn't have to go up very much so far, same dose since months, I couldn't eat otherwise, but keeping it as low as possible. Cannot do cannabis either. No alternative ever worked.

That’s encouraging. Someone mentioned horrific anxiety in crashes was that you? The worst thing about my crashes is the anxiety it feels like my brain is folding in On itself and I’m loosing my mind and I can’t sleep because every time I fall my nervous system jolts me awake ina panic. I need a BEnzo to stop this. Also do you find the benzo can pull you out of a crash or do you then have to deal side effects after. My issue with ritalin is it would give me much better function but then once it wore off my POTs would go nuts. And then if I took it daily I’d end up getting rage attacks.

 

[Wayne]

Hi @xebex -- I just made another post (pasted below) on the tinnitus forum that could possibly be relevant to your situation. I sincerely hope you can find something that works well for you!

Tone Pacer Pro for Android​

​

"The Tone Pacer Pro application is the professional version of the popular Tone Pacer APP...​

​

...The Pro Version due to its flexibility also lends itself for notch-like treatment protocols that have been shown to attenuate tinnitus and Stochastic Vestibular Stimulation.​

​

The Pro version was design to meet the needs of professionals seeking an application for the generation of acoustical auditory stimulus."​

........................​

​

I regularly visit a chiropractor who uses a wide variety of "alternative" modalities. He muscle tests for everything he does, including his normal chiropractic adjustments. He does the same for various other modalities he employs. One day he checked to see if I might benefit from a relatively new app he'd just gotten called the Tone Pacer PRO ($60), which is used in conjunction with AfterShokz Headphones (around $100 U.S.).​

​

After testing for which frequencies I needed, and for how long, I laid down for 20 minutes and let it do its thing. Within a few minutes, I was pretty gob-smacked by how relaxing it was. As somebody who's done many things over the years to help calm down my body, brain, and neurological system (including using benzodiazapines), I could hardly believe how something so seemingly simple could be so relaxing.​

​

I recently purhcased this app so I could use it regularly at home, and have found it very helpful to be able to do this on a daily basis. One thing I've done in the past that seems somewhat similar to this Tone Pacer PRO is a microcurrent device called Alpha-Stim. I paid about $600 for that unit, and found it to be very helpful. But this Tone Pacer PRO experience feels much deeper than my Alpha-Stim experience. At least part of the reason could be that it has both a gentle vibratory and auditory stimulus.​

​

I can't really say whether it's affecting my tinnitus severity on an ongoing basis. Being able to use this on a daily basis is coming on the heels of my discovering a product called GABA Calm that is helping to soften both my ear and head tinnitus. But I can say that the Tone Pacer PRO does positively affect both my tinnitus and my auditory cortex agitation while I'm using it. To clarify, I think of "generalized auditory cortex agitation" and head tinnitus to be very similar if not the same thing for me.​

​

Anyway, just wanted to share what I've come across that's working well for me. I would have loved to have had something like this at the time of my initial traumatic tinnitus onset back on Feb. 4, 2018. But even though I'm much improved from that initial screeching 10+++ tinnitus back then, I'm extremely happy to have discovered this new therapy at this time. One more notch in improving the quality of my daily life.​

 

[xebex]

@Wayne thanks for this info yea I have found that listening to certain sounds and tones is helpful. I’m currently listening to brown noise and I’ll check out that app thanks!

I am also a member of the vagus nerve stimulation group and I tried vagus nerve stimulation on the lowest setting for 10secs and had a terrible crash it’s almost like I’m already in a very parasympathetic state so vagus stimulations pushes me even further into that state.! Everyone in the group was gobsmacked that it could have such an impact so although very interested in the alpha stim am slightly wary.

 

[Senta]

@xebex I had exactly the same experience with TVNS, I also used the lowest possible settings for 2 days and had an awful crash that included experiencing adrenaline surges while trying to fall asleep. Totally awful, still coming out of it three weeks later. A therapist recommended I try EMDR therapy, which apparently isn't just used for trauma any more. I have yet to make an appointment.

 

[xebex]

@xebex I had exactly the same experience with TVNS, I also used the lowest possible settings for 2 days and had an awful crash that included experiencing adrenaline surges while trying to fall asleep. Totally awful, still coming out of it three weeks later. A therapist recommended I try EMDR therapy, which apparently isn't just used for trauma any more. I have yet to make an appointment.

Oh no sorry you had that! It’s shocking and so strange that we should react like that. Yea i think EDMR could be helpful. I have been using the nervous system reset eye exercise for a while, it doesn’t really improve my as such but it does seem to calm crashes and help me recover faster. Subtle improvements I guess.

 

[Float]

I love this post!!!

I also found an off label medication that resolves symptoms to the point of full function.... for 6 blissful hours. It has been pivotal in recovery from severe to moderate.

I told a doctor and she gaslit me so hard that I'm on fire. "It's all psychological, all in your mind, you are believing it's resolving your symptoms ".
Oh my!!!

I have objective data proving there is a physical resolution, and I can also scientifically trace or to a specific mechanism of action of the medication.

The doctor also said "there is nothing I can do to help you", while I'm telling her what helps me.

Comedy or tragedy ? Especially when that off label medication is withheld and function declines.

Congratulations for finding a remedy!!

 

[hapl808]

I also found an off label medication that resolves symptoms to the point of full function.... for 6 blissful hours. It has been pivotal in recovery from severe to moderate.

What med have you found helpful, and has it continued to be effective for a long period?

 

[YippeeKi YOW !!]

@Float
Where you been !!!????!?? It's so good to see y'all again....

The doctor also said "there is nothing I can do to help you", while I'm telling her what helps me.

Words actually fail me. Well, any that I can use on a public site.

My guess is that if the pharma company that manufactures and sells that med were offering a decent rewards program for prescribing it, that Dr would have been all smiles and prescription pads ....

Comedy or tragedy ? Especially when that off label medication is withheld and function declines.

Check out @Hips thread on online prescription orders, sometimes without needing a prescription .... I'll dig around and find a link for you .... back in a jiff ....

Again, good to see you. And to know how much youve inproved !!!!

 

[YippeeKi YOW !!]

@Float

Here 'ya go ....

Tips for Finding Reliable and Trustworthy Prescription-Free Online Pharmacies
https://forums.phoenixrising.me/threads/tips-for-finding-reliable-and-trustworthy-prescription-free-online-pharmacies.8113/page-39

 

[pattismith]

I love this post!!!

I also found an off label medication that resolves symptoms to the point of full function.... for 6 blissful hours. It has been pivotal in recovery from severe to moderate.

I told a doctor and she gaslit me so hard that I'm on fire. "It's all psychological, all in your mind, you are believing it's resolving your symptoms ".
Oh my!!!

I have objective data proving there is a physical resolution, and I can also scientifically trace or to a specific mechanism of action of the medication.

The doctor also said "there is nothing I can do to help you", while I'm telling her what helps me.

Comedy or tragedy ? Especially when that off label medication is withheld and function declines.

Congratulations for finding a remedy!!

Hello Float, congratulations for your finding!
maybe you wish to share this of label remedy that helps you?

 

[YippeeKi YOW !!]

maybe you wish to share this of label remedy that helps you?

I'm guessing that it's probably something in the benzodiazepine or opioid family, which is why the Dr said she couldn't help, what with the close scrutiny on benzos as well as opioids. Once again, the Dr's comfort over the patient's .... what a shocker .....

 

[Davsey27]

I have heard that benzos are mast cell dampners.I wonder if there may be a connection with taking benzos like klonopin and environmental/mold sensitivity

 

[GreenMachineX]

One more thought.
I am at a point where the brain inflammation isn't touched by benzo anymore. So it's only one factor for me of that inflammation that is going on. By that I mean the dissociation attacks are not touched. But only made easier bearable by a benzo. But it saved me when I was mild.

How would you describe the brain inflammation?

 

[judyinthesky]

How would you describe the brain inflammation?

Hello
My brain expands, slightly pulsating, I have no intracranial hypotension pain then, or not so muss. Everything turns insanely sensitive in my whole nervous system including Hyperacusis. I also get psychological sensitivity.
I have so many symptoms and there's always some main sensitivity in the nervous system, with me my mast cell in gastro tract and gut goes bonkers, but one other day it may be extreme formication, it rotates, but it's always misfiring nerves in different parts of the body, usually of the burning kind.
Also can't do anything, it paralyses due to hypersensitivity.

 

[Rvanson]

I'm guessing that it's probably something in the benzodiazepine or opioid family, which is why the Dr said she couldn't help, what with the close scrutiny on benzos as well as opioids. Once again, the Dr's comfort over the patient's .... what a shocker .....

Yeah, there is no reason the government should be involved in either.