4 years off can’t believe still not recovered!

[[de...]]

My timeline memory is sketchy, LiveLife.  Really sketchy.  I got lost in a haze. 

 

It would be less than a year ago that there I began to see a reduction in the chemical fear.  I've still got it, but nowhere near as bad. 

 

I felt everything on the planet was set to kill me.  Everything was a danger.  Thought a poxy lion statue in neighbour's front yard was about to devour me.  Cars about to run me down.  People on the street looked like dead people.  Omg it was horrible.  Don't know how I survived.  As I say, less than a year ago, but remnants remain.  Just hits me out of the blue.  Fear, terror.  And then it passes. 

 

Yes, I did have night terrors that woke me, but they have passed, and now left with the toxic nap crap, which is so very frightening.  Makes me cry, and ask the universe for help.  :'(

 

Still, I have turned a corner and can feel real improvement.  Stuff still remains, but compared to what. It was like, I'm grateful.  This gives me some evidence that eventually I will be truly well again. 

 

I'd say about a year ago that the terror stuff started to settle, and when it comes it is much more short lived, and I'm able to manage it better.  I still hate it though.  Who wouldn't. 

 

I have not expressed myself very well LiveLife, I hope you understand. 

 

Hugs to you, too.  🌺

[[de...]]

You are not a failure leann, you are struggling with a really difficult, and terrible problem, which takes enormous strength, and resilience. 

 

Try not give yourself a hard time about brief return to medications, it's yesterday's calendar. 

 

I took one tablet of an anti depressant throughout all this and it nearly killed me.  I understand entirely what happened to Anthony Bourdain.  Luckily it was not me.  I will never touch an anti dépressant again.  I'm not saying people don't benefit from them sometimes, but DEFINITELY not me. I understand, leann. 

 

Hang in. Try  do something comforting for yourself today.  Try get out of bed, even if to walk outside and look at the sky, the trees, the birds, even if for a brief while. 

 

And if you must, return to bed, later.  Tiny bits at a time leann.

 

 

 

 

[[Li...]]

Dee,

 

Thank you so much for your considerate response. I'm so sorry that things were so intense for you! My fear is pretty off the charts in chemical nature but it's not attached to people or objects like that, but it is unbearable. I'm so happy to hear that you've improved and you're turning a corner. Hopefully your final healing is coming soon. Big hugs!

 

LiveLife

[[de...]]

We'll make it out eventually LiveLife.  Be kind to ourselves.

 

Need to add that it is not just things, objects, etc., that inspire the fear, terror, but fear standing all on its own without anything to attach.  Just unbridled fear wherein there is nothing to fear, nothing to attribute it to.  Horrible. 

[[le...]]

Feeling really jittery today like I can’t sit still, with the zop didn’t feel as bad as this slowly got worse. Washed nearly every towel in the place, getting lot more physical symptoms off the diazapam, keep pacing around. Almost like panic attack. Just don’t understand how things can get worse this long off original meds. Really think permanent brain damage can be possibility.

[[de...]]

Oh, well, the corner I turned had me hit a brick wall.  Everything has returned.  It's in the am here and am hit by cortisol raging.  Mentally challenging to say the very least.  I feel so sick and can see no point in going to the doctor.  Feel like screaming in despair. 

 

Looks like it was my first real window and I got over excited and optimistic.  :'(

 

I'm sorry for not responding to a couple of PM's I've received, can't get it together to do so.  I'm in survival mode.

 

Hoping that first real window is hope for the future. Yeah, right.  This has been 4 effing years! 

[[le...]]

Sorry to hear that. I’m going to back on low dose diazapam, think I tapered too quickly, feeling awful, haven’t eaten proper meal in over week, getting panic attacks. Feel like bit failure but think still suffering effects flu jab jyst need something short while until it gets out my system. Yet to experience windows, hope yours soon returns

 

 

[[de...]]

You're not a failure leann.  You're a survivor. 

 

I can understand the low dose decision.  There is only so much a body can take without dropping. 

 

 

[[le...]]

History sounds similar, AD’s really messed me up. Really don’t know what is right thing to do. Don’t know how long will take for the flu jab to get out my system. See you stopped and started Valium. Just seemed to help things a bit, in such a state, haven’t eaten properly for least a week. Someone in success stories said she tapered for month at a time when reinstated and was OK. Only been off them 10 days so need make decision soon.

[[De...]]

you can try another substance, like valproic acid or pregabalin, imo the latter being worst , no need for 1000 mg, of valproic acid, i guess that 500 mg is fine already, better than your diazepam trial,  flu shot comes with a form of neuroexitatory , it's dcomuneted, it causes symptoms on people which aren't damaged..

[[de...]]

What is it that you've been off for 10 days, Leann?  Trying to get this straight in my mind. 

 

I can understand reinstatement, every case is different, every intensity different.  Just something I didn't do, but who knows what I'd do if everything really went South?  You have to weigh it up. 

 

How are you feeling today? 

 

Maybe psychotherapist could help with intrusive thoughts?  Is there access to 'free' stuff where you are? 

 

We have access to 10 free sessions here, which can be extended if necessary.  Without this, I wouldn't be able to see anyone either. 

 

Do you think you can hang in a little longer leann? 

[[le...]]

Diazapam, I used it when felt so ill after flu jab, going to go back on it, read success story lady came off it too quick. Went back on 2 mg, tapered off about every month diwn to 0.25 mg and was absolutely fine afterwards. Nearly got enough to do it. Figure it has lot less side effects than some stuff tried put me on. Think I need combination of low dose meds and therapy. Have long waiting list for therapy on NHS, dud have some in past she was useless. Have found a good therapist but might have wait while fir more session see if I can book directly through her. The NHS ones are rubbish. I think so long as I taper slowly should be oK. The flu jab still in my system,  which has revved up symptoms. Not ideal but taking nothing jyst waiting doesn’t seem to work . Diazapam is only med I can tolerate and just need to try see if help me get some sort life. As I was only on it 9 weeks figure worth trying. I don’t intend staying on it permanently. Otherwise think will be like this for years. It was CT that started this 4 years ago, so hopefully proper taper will be OK. Mrsnicag was the success story.

 

 

 

 

 

[[le...]]

you can try another substance, like valproic acid or pregabalin, imo the latter being worst , no need for 1000 mg, of valproic acid, i guess that 500 mg is fine already, better than your diazepam trial,  flu shot comes with a form of neuroexitatory , it's dcomuneted, it causes symptoms on people which aren't damaged..

 

 

Do you have any links about the flu jab. I can only assume it was that as symptoms started within day of having it and lasted couple months. Be interested if there is any info, It seems luck of the draw with any vax some people on here are fine after having it! Says pregabalin not suitable for my age also seems have awful list side effects. I’m not bi polar which says the acid thing is for?

[[de...]]

Sounds like low dose reinstatement is the way you want to go leann, and I understand entirely. 

 

I have resisted doing same myself, though have taken a couple of rescue doses when things became unbearable, so I get where you are coming from. 

 

Thing is, will it work?  Read so many stories of people getting into deeper water when they reinstate, and is reason why I have never reinstated.  I could not go through it again. 

 

It's a very personal decision leann.  Consider it wisely is the best I can offer, and if you do decide to proceed I really hope it works. 

 

Do you believe it will help with intrusive thoughts?  My concern here is that after the short period of reinstatement will things return to how they were beforehand? 

 

My best to you leann.

[[De...]]

you can try another substance, like valproic acid or pregabalin, imo the latter being worst , no need for 1000 mg, of valproic acid, i guess that 500 mg is fine already, better than your diazepam trial,  flu shot comes with a form of neuroexitatory , it's dcomuneted, it causes symptoms on people which aren't damaged..

 

 

Do you have any links about the flu jab. I can only assume it was that as symptoms started within day of having it and lasted couple months. Be interested if there is any info, It seems luck of the draw with any vax some people on here are fine after having it! Says pregabalin not suitable for my age also seems have awful list side effects. I’m not bi polar which says the acid thing is for?

 

 

https://pubmed.ncbi.nlm.nih.gov/17884292/ this is about tamilflu

there are several articles on vaccines causing inflammation and neuro-complications

 

valproic acid is an anti-epileptic drugs, both valproic acid and pregabalin,  it's not because of bipolar, you had been harmed by a drug like me, it's not about diagnosis anymore, it's about drug harm, valproic acid is a drug for seizures, pregabalin aswell,  valproic acid mechanism of action is well documented over the internet, its used in cancer, neuropathy, cluster headaches, and bipolar, best option than reinstating and causing further harm , completely different mechanism comparing to antidepressants,. personally I would choose valproic acid over pregabalin, but you know, we can't tell how one will react to such drugs,  better than your trial with diazepam , reinstating and tapering will just further harm your brain and I think it's not a good idea,  you shouldn't compare yourself to this lady story, it's your take but this is a poor move and imo you should try one of those first, valproic acid acts raising gaba via gaba decarboxylase, an enzymatic pathway that prevents the neurotransmitter to be degraded, also acts on soudim and calcium channels,  my point here is that ino you should do this instead of your idea of reinstating and then tapering slowly, it's a bad idea given that you're already harmed by a drug that acts in a very similar way in the gaba a receptors, you will kindle yourself

[[le...]]

Not sure what to do. Been back on diazapam fir a week, seems to be having a paradoxical effects, the intrusive thoughts seem git worse. Got a few 2mg left. Wondering is it better jyst to stop it as only been on 2 mg a week, or do a quick taper down  to under 1 mg. Had real meltdown last night gone off food again and today want to just stay in bed, feel exhausted and achey Think the effects of flu jab still in my system. Don’t want take any more meds, but just  4 years with little improvement lost hope of ever recovering. Taking more meds jyst seems to much of a game of Russian roulette as non seem to help.

[[De...]]

sorry for that, it's not easy, maybe one of this drugs could even help, you out? still they are drugs...depakote comes in 125mg pills and maybe that would be enough, pregabalin has doses as low as 25mg if that would make things better would be worthy, the flu shot probably played a role on your unwellness, and probably stopping the diazepam will flare symptoms but you will soon get back where you was at before,  you then decide if you will or not try one of them because is possible that they don't do much while having a flare from the benzo

[[le...]]

Just seems whatever I try ends up backfiring. Just think maybe my CNS is too damaged to repair. Burning up today so maybe still after effects from flu shot. Get so angry taking tiny dose of zopiclone that I had normal life on caused so much suffering. Think it is some sort inflammation as I get throbbing gums on really bad days, just been to dentist and had x rays everything good with my teeth. Just not sure whether just get diazapam out my system or do rapid taper to 0.50 mg.

[[De...]]

I don't know about how you should taper lean, valproic acid is somehow anti-inflammatory, it raises gaba in the brain via another mecahnisms, not via gaba a receptors agonism, if you search on google you will find out how it works In the brain,why it's used for epilepsy, pIm against all drugs used by mental health professionals, I was a victim of them since the beginning, still I don't know how would I be without the pregabalin, or I would be worst or I would be done with this thing by now, I tried to warn you many times that taking a benzo and rescue doses of zopiclone wouldn't work well, given that all this nightmare going on with you and many others are In the majority due to this class of drug, then others involved like ssri's and antipsychotics, keep this drugs mentioned in mind, their mechanisms are different comparing to antidepressants and maybe they could help you,  valproic acid imo being a better one to try at first.  comparing with other anti-epileptics drugs, carbamazepine, lamotrigine, which I don't  think would be a good idea at all, and their effects on  the brain and central nervous system, I guess this is the one with the less harmfull/safer profile, because maybe if you slow down this storm on the brain for a while it could  help ...

[[de...]]

I'm no expert by any means leann, but I'd get off the diazepam as quickly as I could. 

 

Worth a try, but it didn't work. Now you know it's not the way to go. 

 

I hope you're travelling ok today leann. 

 

I've got a stinking rash, runny nose, and sneezing. 

 

 

 

 

[[le...]]

Decided to stop it as only been on it a week. Felt really crap yesterday spent day laying on sofa not eating but gradually went off. Yes not trying any more drugs. Think still git some of flu shot in my system. Diazapam did help initially when was really bad after initially having vax but like so many these things started having reverse effect. I am trying NAC meant help with OCD type symptoms. Just beginning to wonder if some of us don’t heal as no matter what I try things don’t improve you really question if your brain is too damaged.  But def no more prescription drugs.

[[Wa...]]

Just thought I'd pipe in on here as it's been a long while.

 

I am approaching 4 years April 1st and still very bad. I was turning corners at 2 years then AB setback. Then started getting windows at 3 years and then a few months later, another setback due to alcohol in a steak I was eating (I thought it would cook out). Then I got Giardia out of nowhere, then all 4 of my kids left home. Three off to college out of state and my baby went to go live with her dad and his wife because she was missing her siblings and felt I was too sick to care for her. My ex is now taking me to court and I might lose my home. Still battling Giardia 8 months later because I refuse to take an AB but trying some natural things. Lost 20 pounds and super sick. So...yeah...that's how things are over here