Severe case not healing

[[Wi...]]

5 hours ago, [[j...] said:

Can’t remember if we’ve already spoken before, but just wanted to tell you that an antibiotic started this all for me too (flagyl). Sometimes I get terrified that I won’t heal because flagyl doesn’t have the same “success story” documentation or community as the psych med community. But like Angie said, neurotoxicity seems to be similar with any med. I don’t think more psych meds are ever the answer. I’ve been suffering for four years and often feel like I won’t heal. But I think time off meds is what heals us. You’re not alone!

Ugh sorry  Yeah me too, it was the Cipro that started it all for me BUT not even psych meds put me through the worst that began after I had a reaction to the hormonal med and another antibiotic (which I tolerated well after Cipro but before the hormone). 
 

I know people heal after years and even after severe polydrugging. But it just seems I am way too severe. I mean ffs there is so much wrong with me, my nervous system is just electric and not operating properly at all and it’s getting worse and worse and then some worse. 

[[jo...]]

@[Wi...] the flagyl did the most damage for me too. Then the psych meds just added fuel to the fire, coming off the pill, another antibiotic setback, toxic relationship, friends abandoning me, jab, getting C0vid, various supplements, living in mould, now moved house and living next to a landlord who’s abusing their puppy and neglecting it. The list goes on and on. Four years of non stop hell. I don’t get windows. I’ve gotten worse. Everything goes wrong. I feel cursed. So I completely get it. I seriously do. It’s impossible to have hope at this point. Surviving is the only choice 

[[ti...]]

22 hours ago, [[j...] said:

I’m 4 years into this and severe. I’ve gotten worse rather than better. How does being this far out though, invalidate the idea that we all heal? Genuinely curious. I’m hoping and from what I’ve seen, it can take longer for some of us, so the duration doesn’t mean we won’t heal

This is a literal brain injury. What other type of brain injury can you think of does every single person heal from? Most people get better but if you're already years out, you've done most of your healing already. That's how brain injuries work. Any doctor will tell you that. Sorry to be so negative but I can't stand hearing that we ALL heal stuff when it's just not true. I have permanent neuropathy from taking this crap. 

[[jo...]]

@[ti...] it’s a shame that you think being a few years out means that “you’ve done most of your healing already”. I know people who healed and got their lives back, but it did take some years! The body never stops healing. It works every single minute of every single day to get back to homeostasis.

 

Not sure which doctors have told you otherwise but that is untrue. I’m not even really sure why what doctors have to say on the topic bears much weight. They won’t even acknowledge the injury at all and most of them are totally unfamiliar and uneducated about BIND/neurotoxic injuries/psych med withdrawal! People learn to walk and talk again years after they’re in car accidents and the like.

 

I can understand and really empathise with giving up hope, because I feel the way a lot of the time, but how can you decide what you have is permanent yet? Especially when I’m further out than you and (many) others have healed at points further out than you too. I’m not proclaiming that everyone heals at all, but 3 years doesn’t equal permanent. It could still lift. I hope to hell the things I have right now aren’t permanent and I’ve had some of them for four years 😞

Edited March 19 by [jo...]

[[Du...]]

On 18/03/2024 at 12:58, [[j...] said:

Can’t remember if we’ve already spoken before, but just wanted to tell you that an antibiotic started this all for me too (flagyl). Sometimes I get terrified that I won’t heal because flagyl doesn’t have the same “success story” documentation or community as the psych med community. But like Angie said, neurotoxicity seems to be similar with any med. I don’t think more psych meds are ever the answer. I’ve been suffering for four years and often feel like I won’t heal. But I think time off meds is what heals us. You’re not alone!

How worsening are you?

[[Ba...]]

On 10/03/2024 at 03:11, [[W...] said:

What do you do when you are a severe case not healing? I know that you want to say “you will heal”, etc., but I have been drug injured for 4 years with the last 1,5 getting progressively worse. I saw healing the first 2,5 years, yes. But the “setbacks” injured me further… Every month I would get new issues telling myself yeah okay in 6 months I will start getting better. I haven’t. New symptoms keep coming on. What I had a year ago as an occasional occurrence is now with me every day. The occasional electricity in my body became a daily thing too, like a live wire is stuck to the back of my neck affecting everything driving the electricity all over me. Add to that paresthesia all over. Head sensations that make me unable to do anything. Oh and the amazing burning inside that feels like I have something toxic in me, I have it every single day too and it began a year ago as a subtle weird burn once in a while. It can be in my head, throat, stomach or spreading down my legs, it’s not even pain, it’s this altered state like I have swallowed bleach. I am terrified that it will get even worse and seeing what has happened it probably will. Everything has become worse. Everything. I feel like I am falling apart. I am depressed, anxious and see zero hope. Zero. I know I would have hope seeing any improvement but the truth is I haven’t seen any. I am the horror story. I want to be here for my baby but it’s really getting hard to survive. Groundhog day but every month realising that it got even worse. What’s the point… I had a conversation with my father who told me that well if I am not healing I have to accept it and live with it. Well, excuse me, try to live with fire and electrocution every day. And try seeing that get worse month by month. Good luck. 

I would slowly, slowly start detoxing with foods if i were in your type situation. This is me!! However, the body can heal but has to be  given the right support. Im at a standstill with the buzzing sensation but everything else is noticeably, yet s-l-o-w-l-y improving. I had to go back to what i know of natural healing and what i learned many years way before the current health buzz going on presently. You have to support your body systems. Start with nutrient dense foods.

[[Ch...]]

Late to this topic, but so sorry that you’re dealing with this. I’m 4 years in and still managing recovery. From what you’ve said, the all over poisoned feeling is common for Long Covid. Up to 50% of infections are asymptomatic, so may be the case. The diagnosis is generally one of exclusion, and GPs are uneven about their knowledge, so if it’s available best option is to get evaluated by an LC specialist or at an LC clinic. Hope this helps.

[[Nu...]]

On 11/03/2024 at 11:59, [[R...] said:

@[Wi...] chris paige charges 100$ for 30min video call

Did you have a call with him? Was it beneficial?

[[Nu...]]

On 15/03/2024 at 04:50, [[D...] said:

Wat can they say..but the usual bullshit..have faith and hope..hold on

It's too much ..these ppl are exploiting the sick and desperate 

That seems kind of harsh. Some folks want/need education and guidance. I'm not trying to justify the service or its pricing, but some people do find it beneficial.

That rate shouldn't be that high, IMO, but if someone doesn't feel it's appropriate then they just don't accept the service offered.

[[Da...]]

[[Da...]]

On 18/03/2024 at 07:56, [[j...] said:

@[Wi...] the flagyl did the most damage for me too. Then the psych meds just added fuel to the fire, coming off the pill, another antibiotic setback, toxic relationship, friends abandoning me, jab, getting C0vid, various supplements, living in mould, now moved house and living next to a landlord who’s abusing their puppy and neglecting it. The list goes on and on. Four years of non stop hell. I don’t get windows. I’ve gotten worse. Everything goes wrong. I feel cursed. So I completely get it. I seriously do. It’s impossible to have hope at this point. Surviving is the only choice 

I was diagnosed with Long Covid...that has a whole host of issues as well!

[[Da...]]

On 11/03/2024 at 17:09, [[W...] said:

No, it was the Cipro that started this but it’s said to affect the same receptors. That’s why I am here, also it’s a better space than Cipro groups on fb. But I was then affected by the setbacks. Still it’s all the same nervous system injury. I talked to Angie Peacock and she said she has clients affected by different drugs, not only psych meds, it all looks the same.

I went to a few neurologists after the reaction to Cipro and psych meds, I had MRIs, EMGs, numerous blood tests checking for autoimmune issues. Nothing significant was found. They didn’t know what I had. All they could offer was pregabalin and that gave me bad wd including akathisia (that was later retriggered by my setback).  Pregabalin wd landed my in psych ward where the didn’t recognise akathisia and then tried to give me a cocktail of meds including seroquel. After all that it’s quite obvious to me it’s all iatrogenic in nature and doctors know nothing. 

My symptoms do change a lot in that it’s not very severe all the time. Right now it’s more neuropathic pain than the electricity. Which sucks too but it’s still better than electrocution.

I just feel it happened to a very wrong person. I have always had health anxiety and now it’s a nightmare. But who wouldn’t have it. It’s very difficult for me to keep my hopes up as I haven’t seen any improvement since the setbacks.

I really admire your attitude!

I can offer something of what I learned from my neurotransmitters tests here - Seroquel, Pregablin, Most Antipsychotics, some SSRI's, blood pressure meds and anti-histamines (to name a few), are Anti-Cholinergic Drugs....They, act on the Acetylcholine Neurotransmitter which, according to many studies so do Benzos.  So it appears we have 2 neurotransmitters involved.  Acetylcholine is the chief neurotransmitter for the Parasympathetic Nervous System.  

https://my.clevelandclinic.org/health/articles/24568-acetylcholine-ach

 

Like you I was given Seroquel - A BIG Anti-Cholinergenic!  My Neurotransmitter test shows I don't have a histamine intolerance, I am actually low in histamine!!!  And Oh my goodness, I am shaking like crazy, have learning and concentration issues!!!  I am starting a Choline supplement but praying the damage to my brain isn't permanent.  I had an MRI done and it Says Chronic Progressive White Matter Disease.  That wasn't there 5 years ago!  Just goes to show we are all different!  I would recommend a neurotransmitter test, it gave me oodles of information.

To add icing on the cake, I have been diagnosed with Long Covid (Never knew I was infected until we went through my med records because Benzos lower body temperature, and that was always a defining factor).

I hope this might be of some help...I know how you feel...not knowing what the next hour is going to be like is debilitating!

Love and Well Wishes

Edited March 25 by [Da...]

[[Da...]]

On 11/03/2024 at 00:01, [[n...] said:

Have u ever heard of guillian barr virus? I think I've spelled it right. Or conversion? There are many neurological disorders that could explain this and there are therapies for them to help. I will look Into these ok, I'll need to know more about your symptoms, onset of symptoms etc 

Possible Autoimmune diseases?

I know you said u didn't have lyme, have u been tested? Do u have any rash?

Please make a journal of everything for yourself and any specialists ok

It's time you find some answers unless you've already exhausted every avenue. 

Ns

I agree...we can't possibly be expected to believe that Withdrawl can be the only condition we have to deal with.  Benzos skew blood work too as do antipsychotics...FDA sent out a notice in 2019!  I have normal low blood pressure, and benzos cause low blood pressure, plus I was prescribed clonidine (lowers blood pressure more and is an anti-Cholinergic) and so I developed a lung condition as well as atherosclerosis on the left ventricle of my heart!  The Anti-Choligerics contributed to this.  It a rough road, but it seems these drugs have been my worst nightmare!!  

[[Da...]]

14 minutes ago, [[D...] said:

 

 

Edited March 25 by [Da...]
OOPS

[[Ra...]]

58 minutes ago, [[N...] said:

Did you have a call with him? Was it beneficial?

no i did not. It was costly for me. But i heard he has sliding rates. 

[[Ma...]]

The @[Da...] do you know that white matter disease affects about 80% of adults and is usually asymptomatic? It affects a large percentage of children too.

Benzo w/d can mimic a lot of ‘diseases’, particularly’disorders’ in the DSM. So, I think you’re still healing….

[[Ma...]]

@[Nu...] Chris Paige is best if you have akathesia. He suffered from it for many years and has since created a foundation to educate the medical community and help those with it.

He’s not a benzo coach, per se.

[[Da...]]

17 minutes ago, [[M...] said:

The @[Da...] do you know that white matter disease affects about 80% of adults and is usually asymptomatic? It affects a large percentage of children too.

Benzo w/d can mimic a lot of ‘diseases’, particularly’disorders’ in the DSM. So, I think you’re still healing….

I pray you are right!  TY 

[[Ma...]]

I feel the same. 

[[Bo...]]

@[Wi...] how are you doing? 🙏💜🙏💜

[[Wi...]]

9 hours ago, [[B...] said:

@[Wi...] how are you doing? 🙏💜🙏💜

Hi, trying not to hang out here so as not to give it more attention than I have to. I am functional and was on holiday but I have immense muscle tension/pressure most of the time. It’s like my neck, face, front of neck, back of head, upper chest and upper arms are all clenched most days, I have no idea what the hell this is. It got worse over time, I rarely had it in the face and the last few weeks it’s in my face all the time. It also started going down my scm muscles and upper chest and it’s so weird. Before, the pressure and tension was mostly in my neck and shoulders. I am starting to think at least a part of it might be my own anxiety because it just doesn’t make sense. It all causes nerve pain and just general discomfort. Lost hope it will ever improve tbh. Some of my symptoms have improved or gone away in the last 1,5 months it seems (no longer get electrocuted by my brain, no electric feeling under my skin, way less pain).

 

Also today I had a panic attack after eating out, still kind of shaken up, derealisation, more head pressure than usual. I hope it won’t make me worse and it’s just a short reaction to something in food because it freaked me out. I normally check all the labels for glutamate and other weird additives but didn’t think to ask the staff about ingredients. It was awful! It may have been coincidence, though. Last week I had a panic attack when I smelled dry shampoo. It’s ridiculous as I rarely had panic attacks before and I am long off of everything. 

Edited May 5 by [Wi...]

[[Bo...]]

@[Wi...] great to hear you’re functional and able to go on holiday! That’s a huge deal and shows great progress after the hell. Really glad you’re doing better. 

hoping things settle with the food  stuff soon! Seems your body is trying to sort itself out decently and hoping more better days for you soon! 

[[Wi...]]

1 hour ago, [[B...] said:

@[Wi...] great to hear you’re functional and able to go on holiday! That’s a huge deal and shows great progress after the hell. Really glad you’re doing better. 

hoping things settle with the food  stuff soon! Seems your body is trying to sort itself out decently and hoping more better days for you soon! 

How are you? I hope at least a bit better. 
 

Yeah, I am more functional definitely, been walking a lot and I had been bedridden for over a month before. But it’s still just trying to push through the symptoms, the buzzing brain and sometimes other body parts, the pressure and tension and some other minor things. I am grateful most of the stuff that made me bedridden calmed down but really scared the two incidents will cause a setback and not just a short-lived reaction omg. I cannot go through this again. 
 

And it really freaks me out the tension is getting worse, it doesn’t make any sense. But it seems too bad to be just a result of anxiety. 

[[Le...]]

all antidepressants give me severe shock like feelings. especially when i try to sleep. the i wake like i am gasping. no dreams. i will never touch again. after benzo problems reactions to things are likely even greater. any of that familiar?  

 

dont make any quick changes based on my words but none of this stuff is really responsibly tested and tinkering with your nervous system is a bad idea almost always. and doubly so after damage from some. 

[[Wi...]]

 

I can’t believe this but I guess the reaction to probably the shampoo sent me into hell deeper I had ever known. I can’t keep going on like this. New symptoms came on, I am hysterical. I feel like I am on fire, immense pressures in my stomach, chest, throat. Severe vibrations. I just can’t. Now it feels like something wants to explode out of my chest. Before that my upper body was stinging and on fire. I had a short glimmer of hope in April and now I am worse than ever. Again. This will never end. My baby is turning one in two weeks and I am not sure I will make it until then. Omg.