Agony at 7 years!!!! Surge before healing??

[[gu...]]

Hi everyone, please forgive the scary title. I am completely overwhelmed by my worst waves since year 1. For 6 weeks now I’ve had new horrible sxs and rapid cycling. Baylissa and others who know a lot about extremely protracted people , tell me this is normal.  It’s cruel and frightening. Any support is greatly appreciated

[[Bu...]]

Hey @[gu...],

I am so sorry.  What symptoms are you dealing with now?  Are they new ones or a reemergence of ones you had before?  How were things going before this current 6 week wave?

 

[[gu...]]

Many new sxs.  Life was much more manageable before this, and at times, really great. now I live in acute for the first time since the beginning.  And no, I did nothing negative to bring this on.

[[Bu...]]

@[gu...],

I'm sorry, I didn't mean to imply that you did anything to bring on the wave.  I know they just happen sometimes.  I was just wondering if the sxs are familiar, or if you have to learn how to deal with a whole new set of issues?  Either way, my heart goes out to you. ❤

[[bw...]]

 

Recurrence of symptoms after successful withdrawal  It is not unusual to experience recurrence of apparent benzodiazepine withdrawal symptoms years after a successful withdrawal and a return to normal health. The particular pattern of symptoms is unique to the individual, depending on his physical and psychological makeup, and no doubt on the innate density of his/her benzodiazepine receptors and the balance of his endozepines (see above). The experience of benzodiazepine withdrawal is deeply etched into the mind and memory of those who have been through it, and is actually physically present in the strength and connections of their neural synapses, as all memories are. These recurrent symptoms are all signs of GABA underactivity with its accompanying increased output of excitatory neurotransmitters, resulting in a hyperactive, hypersensitive central nervous system. The mechanism is exactly the same as that of benzodiazepine withdrawal, which is why the symptoms are the same.  In nearly every case of apparent recurrence, the precipitating cause for the return of symptoms turns out, on close inspection, to be an increase in environmental stress. The trigger may be a new stress or worry which may be unrecognised so that the return of symptoms seems to occur out of the blue. Contributing factors can be an infection, surgery, dental problems, work problems, fatigue, bereavement, family problems, loss of sleep, adverse reaction to a drug, change of environment - almost anything. It may also be that with increasing age and long-term worries, the brain simply gets less efficient at coping with stress. In addition, there may still be some lingering old disturbing worries/thoughts/memories that have been buried in the unconscious mind but are resurfacing now because the brain has not been able to deal with them adequately in the past. For those who have experienced a traumatic benzodiazepine withdrawal, an element of post-traumatic-stress disorder (PTSD) may be involved. This is a recurrent condition that can be triggered by small reminders of the past trauma. It is as if any new stress pushes the individual over the limits of his stress-coping abilities. As discussed above, some people who have been on long-term benzodiazepine treatment have a lowered tolerance to stress, even after they have stopped taking the drug, and are therefore more vulnerable to new or recurrent stresses.  It is not clear why many people report experiencing adverse effects from new drugs or drugs they have tolerated before taking benzodiazepines. The drugs involved are so disparate - from skin ointments to eye drops to local anaesthetics to antidepressants, steroids and many others - that it is difficult to attribute these reactions to metabolic effects, allergies or other known effects. Presumably the general hypersensitivity of the nervous system magnifies the reaction to any foreign substances, but no clear explanation has yet emerged. An exception is quinolone antibiotics which displace benzodiazepines from their binding sites and should not be taken by patients on, or recently on, benzodiazepines. - professor heather ashton 1999.

Stay off all meds and ride it out. You will eventually come good again.

 

Edited March 2 by [bw...]

[[bw...]]

I also suggest you read dr jenn leighs setback story she had at 6years and went back to acute for 12  - 18 months. Healed now though'

 

What are your symptoms??

[[gu...]]

6 hours ago, [[b...] said:

I also suggest you read dr jenn leighs setback story she had at 6years and went back to acute for 12  - 18 months. Healed now though'

What are your symptoms??

Extreme depression, dizziness, agitation, emotional overwhelm, insomnia.  I’ve read Jenn’s story, also Matt Samet’s. This is much more pervasive than acute was for me. Thank you for responding.

[[Ma...]]

N/M

Edited March 3 by [Ma...]

[[bw...]]

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

Extreme depression, dizziness, agitation, emotional overwhelm, insomnia.  I’ve read Jenn’s story, also Matt Samet’s. This is much more pervasive than acute was for me. Thank you for responding.

You may find comfort in my posts i started on my own WORSE than acute setback. Im still in it unfortuatley.

I was back at college studying.

Now left in bed. After feeling somewhar 80% before.... go figure.

[[gu...]]

Wanted to let everyone know that yesterday, I had an 8 hour window where everything lifted and I felt peaceful and normal.  I am on my way out of this severe wave.  You all will get there too.  Whitters, you will get there!!!

 

[[Ma...]]

WTG @[gu...]!! How fantastic! Hopefully the next window will be permanent! 👏👏👏

[[gu...]]

Well, I got some decent breaks and now right back in the hell of nonstop, emotional anguish.  How the hell can this be happening at seven years?!?! 

[[fe...]]

FYI I'm right there with you. I'm 6 years out, just finished 1.5 years of feeling like a god with no symptoms. Eating and exercising, and spending time with friends. Even switched jobs recently! It was awesome.

Then all of my acute symptoms came back and have now been with me for the last 4 months with zero sign of decrease in severity. NEAT.

[[su...]]

Gutsy and others, I want to jump on this thread as there are some members here who have been at this longer than I, so there may be some wisdom and support here that will be beneficial.  I recognize a few names from my first year on here when I would sometimes stumble upon older posts looking for info. I so wish we were all off these boards, not needing them anymore. 

How do you do this so far out? This is not meant to be patronizing; far from it. I truly respect what you have gone through and just need some sage guidance from those who get it.  My last dose after very short term use and a rapid taper was September 24, 2020.  Like for so many, my early days were horrid.  I finally saw real gains after I hit 9 months, and from there is was just a slow and steady progression until around 18 months where I had only a couple background nuisance symptoms left.  I left the support boards and those symptoms seemed to have left or I just forgot about them altogether.  I moved on and was living, had nearly 2 glorious years.  Recently I’ve experienced a flare and a return of some of those early days and it is freaking terrifying.  It will be 4 years off later this summer for me. 

I’m so sorry you all are experiencing these things further out than me, but please share how you wrap your heads around this and handle it. 

 

Healing vibes to all. 

[[su...]]

On 02/03/2024 at 04:34, [[g...] said:

Hi everyone, please forgive the scary title. I am completely overwhelmed by my worst waves since year 1. For 6 weeks now I’ve had new horrible sxs and rapid cycling. Baylissa and others who know a lot about extremely protracted people , tell me this is normal.  It’s cruel and frightening. Any support is greatly appreciated

Gutsy, I also want to say thank you for bringing in what Baylissa has said.  While difficult to understand and wrap my head around, it is still helpful to know you are not alone. It is indeed beyond cruel and frightening. I truly hope this wave is over quickly for you and you come out the other side finally done.  Sending you healing vibes.  

sunshine 

[[gu...]]

This wave sometimes go up a little bit but mostly is still so so horrible. I can’t believe it. Definitely as bad as acute. I just don’t understand, new symptoms that are horrific, and I’ve never had to deal with before. So so hard.

[[or...]]

On 01/03/2024 at 11:34, [[g...] said:

Hi everyone, please forgive the scary title. I am completely overwhelmed by my worst waves since year 1. For 6 weeks now I’ve had new horrible sxs and rapid cycling. Baylissa and others who know a lot about extremely protracted people , tell me this is normal.  It’s cruel and frightening. Any support is greatly appreciated

Hi gutsy, so sorry to hear this, I have such high hopes for getting off this clonazepam.  I don't see any History for you on your profile, I've just been here a year and don't think we've met here.  I would be so appreciative to know how you tapered, jumped, and what's happened (just basics) in your 7 years?

If you don't feel up to telling all that, please forgive me for asking, oregonlady

[[dj...]]

On 01/03/2024 at 23:32, [[b...] said:

I also suggest you read dr jenn leighs setback story she had at 6years and went back to acute for 12  - 18 months. Healed now though'

What are your symptoms??

Dr Jenn said that?  I’ve talked to her and have read her stuff and she never mentioned that.  Do you have a link?
 

I don’t think she went back to acute for 12-18 months.  She could barely walk at times in her first 12-18 months.   But yes, back into wave I can certainly understand. 

[[dj...]]

This stuff just leaves an imprint in our brains I think.  Almost like cancer coming back. 

[[dj...]]

On 01/03/2024 at 23:32, [[b...] said:

I also suggest you read dr jenn leighs setback story she had at 6years and went back to acute for 12  - 18 months. Healed now though'

What are your symptoms??

Just found that blog.  She wasn’t back to acute for 12-18 months.  The wave hit her in July 2017 and she said by Christmas 2017 she was 50% recovered and by Feb18 only had minor symptoms.  
 

I know these setbacks suck but 6-7 months is more encouraging than 12-18 months.  I try to avoid doomsday scenarios here.  

Edited April 1 by [dj...]

[[dj...]]

I know a lot of people here are terrified of ever taking another psych medication ever again, and for good reason.  In the acute and early stages of this, medications really can’t do much and are more likely to cause harm than good.  
 

Once people have healed (for the first time at least), I am curious if a low maintenance dose of an anticonvulsant like Lamictal or Trileptal might help.  Something to just keep the brain from overfiring and too easily falling back into a destablized state.  

[[bu...]]

On 17/03/2024 at 02:43, [[g...] said:

Well, I got some decent breaks and now right back in the hell of nonstop, emotional anguish.  How the hell can this be happening at seven years?!?! 

are you doing neuroplasticity work to heal? your brain is still in fight n flight. 

[[gu...]]

Just an update. So, after probably the worst night I’ve ever had in withdrawal, literally two days later I had a really good day. And I had two more good days in that same week. It is a super roller coaster.

[[Re...]]

I am glad to hear that you are doing better and have empathy for those in our community struggling with protracted issues. I mean, it could be anyone as I think many of us have to be careful what we ingest and do for a long while due to this injury. Out of curiosity, do you take any other prescriptions, vitamins, minerals, OTC remedies, alcohol, energy drinks, etc? I have heard that the most common triggers for setbacks when a person is off all meds are antibiotics, steroids, Vitamin D, hormone therapies, vitamin protocols, naturopathic remedies, Tylenol, weed, alcohol, and eye or ear drops. I even heard of a woman having a setback after getting her hair dyed, although that was only one person so far. When someone posts about a sudden surge after months of healing I have found it can be attributed to something they took perhaps without realizing it could affect them. Do you think that was the case?

What a tangled web as there are so many things to be aware of after this.

[[gu...]]

Setbacks can happen for no reason and often happen toward the end. I’m just hoping that’s me. I’ve changed nothing. I’ve taken the same vitamins for 20 years.