Iggy131313 validation is imminent

[Altostrata]

No more questions for me, Iggy. I've explained to you all I can.

[Djones1984]

Not trying to push meds on you and I don't like meds anymore than you but klonopin at a low dose has pretty much got rid of my akathisia and my dad has taken benzos for thirty years with no problems and no increase in dose. Limictal would be worth looking at too I think. But I get that you are afraid of meds but if something works just a little might be worth it.

[Iggy131313]

So here I am, 5 and a half months into this hold on 0.48 and just when i thought things couldnt get any worse....they did

 

in late september and early october i had 4 windows, these windows lasted hours never a full day and didnt happen togather, one day here and one day there, but i felt a little better for a few hours and was able to nearly function, i walked to the local shops etc with only minimal suffering, enough to make me cry, but not to beg to be killed.

 

now this week, just over a week ago i was slammed with the acute again, im wondering if like those who are drug free who go into acute at 5-6 months off, this is whats happening to me in this hold, especially as I had such a major crash when i started to hold.

 

the symptoms I am having are

 

severe akathisia

severe anxiety/terror

severe dp/dr

severe ginital hyperarousal

severe head sensations and migrinaes

hallucinations

hearing voices

sever anguish

severe confision

unable to communicate with anyone

unable to distract in anyway

 

all I can do is lay in bed rocking and screaming and begging to be killed, this is not hyperbole, this is my life..i have no idea how i made it this far and i have no idea how to move forward when things just get worse and worse all the time...others may tell me im not the worst case ever seen, but they dont know what my life has become or the 24/7 agony i am in....and from everything ive read, even if this goes away then severe anhedonia sets in and that may be even worse, i dont know.

 

im hoping and praing to every god out there that this current wave is the acute phase of 5/6-8/9 months, that some poeple say doesnt exsist but from every stroy I have read and peope i have spoken to it seems its a real thing, so if it is that perhaps I can hang onto the hope that in a few months it may pass and i might start to improve,

 

im utterly terrified of what the future holds, from what i can see, its much more f this for a few years, then severe anhedonia and cfs, loss of creativity and wit and sense of self, its not looking good for me,

 

all I can do is beg for god to let me die, i have no idea what to do or where to turn, if a drug could help me i would take it, i would do anything, even if it gave me 5 years and then i would drop dead, id take it and be grateful...i have no hope anymore, and just see my little angel boy growing up without a mother,,,im in exactly the same place I was 12 months ago, just as sick, just as hopeless, in fact much more hopeless as at east I had only been suffering for 5 mnths this time last year, and here i am 17 months with no improvemnts, and the more stpries i read the more i see how endless this really is...and i dont mean for everyone, i mean for poeple in the severe state that i am in, and you must understand that on the bell curve that people talk about, im at the worst end of that, the very worst...

 

yesterday laying screaming rocking in bed, unable to see, hallucinating, didnt understand where i was or who i was, akathisia torturing my mind and body, genital arousal making me feel like im being assulted and driving me to insanity, shear terror and dread racking through me at unbeliveable levels, hearing people shouting my name and music that is not there, discordant piano music, knowing somehwre deep in my mind that i have a son, that i love but not being able to see him, i havent seen him for a week, he cannot see me like this.

 

there is no hope left, its impossible that there is any coming back from this level, and for those who have been to this place all tell me the same thing, that when i does pass, anhedonia settles in and they say it is even worse, I know one person who has had severe anhedonia for more than 10 years....ssri, nothing else, ssri

 

im looking at the possibility of HBOT to help, it would be the last thing i did before i called it a day, i owe it to my son to try everything i can think of, although at this point i have given up all hope, truely given up, i know i cannot heal, that much is clear to me, and im so scared about whats going to happen, so so scared..

 

I just thought i would update here, i dont know why, but i thought i would. no one has to reply to me, unless you have an opinion on the 5 months thing, could it be the acute wave even though im still on a microdose?

 

and if anyone has any experience with hbot for withdrawal i would be interested to know, I have spoken to one woman who swears it healed her severe benzo withdrawal, thats why im interested.

[mammaP]

Iggy, I'm sorry you are feeling so wretched, but this is beyond what anyone here can offer.

Please print out your post and go to a doctor or ER, show it to them because explaining when you get there

will be difficult. Hallucinations, hearing voices and confusion are serious and if it is not possible for you to 

get through each day with hope of eventual relief then you need to get professional help. 

I wish there was something I could do,it is distressing to hear someone crying out and be powerless to help. 

I really hope that you can find someone who will understand and help. 

[Iggy131313]

thanks for your post MP, but thats the last thing i would be doing, i was just updating where im at, if i went to a dr and told them that they would section me, and i dont need that.

 

i shouldnt have posted, it seems im too severe to post.

 

there is no help that could help me and no, i have no hope left, 

 

i said no one had to reply, and although your post was very kind, being told to go to a dr is the last thing i need, i guss it really is hopeless for me, i thought others would have had the same things

[Meimeiquest]

I think you should go for the hbot. Also acupuncture if it available. I'm sorry, Iggy.

[mammaP]

I'm sorry Iggy I didn't mean to upset you. I know you don't want to go to the doctor,that is how we all got into this.

It's just that you were feeling suicidal before and now feel even worse. I really feel for you and worry that it's all

too much.  I don't know what hbot is but I hope you can get some relief real soon. 

[Nikki]

if a drug could help me i would take it, i would do anything, even if it gave me 5 years and then i would drop dead, id take it and be grateful..
 
Iggy I have mentioned this to you in the past and I will mention it again because you need something to help you get some relief.  Not one of us wants to see you suffer like this.
 
Antidepressants have saved lives.  Yes, they have hurt alot of us too.  When there is a choice of taking something to settle down, take the medicine.
 
There are options available to you.  It doesn't have to be like this.  I don't know what HBot is, sorry.  Why don't you just go to your doctor and tell him that your anxiety and depression and other symptoms what you have listed.  Let him prescribe something.
 
Xanax which is addictive will curb your anxiety and make you relax a bit.  If ssri's do not agree with you, he/she may prescribe a tricyclic which will help with anxiety/depression.  Tell him  you want something simple just to stop the anxiety and unwind.
 
This is what I would do.  If you are afraid of being sectioned, go to the doctor, not the Emergency Room.  Make the appointment tomorrow and tell them it is urgent.
 
Help is available.  You have choices.  Go to crazymeds.com and look up medications for anxiety.  Learn about them.  Give yourself the chance to see that something may work for you.  You can only try. 
 
Hang in there and make that appointment.....
 
Hugs

[Barbarannamated]

Iggy,

 

Do you have access to hyperbaric oxygen therapy? I don't know much about it, but it sounds like an interesting option.

[Petunia]

now this week, just over a week ago i was slammed with the acute again, im wondering if like those who are drug free who go into acute at 5-6 months off, this is whats happening to me in this hold, especially as I had such a major crash when i started to hold.

 

Exactly the same time I started having acute symptoms again, after several months of what seemed like fairly consistent, smoothish windows and waves of recovery.

 

I'm not as intense as what it sounds like you are, but certainly a relapse to earlier, intense symptoms.

 

I attributed my down turn to icecream, chocolate and sugar, but your theory of 5 -6 months could be a possibility because I quit all psyche drugs completely in May.

 

Another theory which may play a part in influencing the timing of our windows and waves is solar activity.  Because our nervous systems are sensitized by withdrawal, we may be more sensitive to the increasing energy coming from the sun at the moment.  It was relatively quiet for a few months, but has suddenly ramped up again with lots of M and X class flares, disrupting earths geomagnetic field (and us I assume).

 

I'm sorry it has got bad again Iggy, and like others here, I wish there was something I could do to help.  If I lived close, we could keep each other company while trying to get through this, but I don't.

 

I sometimes get to a point where I think I can't take it for one more second and wonder if perhaps there is some medication I could take which would work and think about making a doctor appointment, but so far, I haven't done it, and probably wont.

 

You have to do what you think is best for you, including trying HBOT if you have the resources for it.

 

I hope you pull out of this bad wave soon, but like others have suggested, if you get to a point where you can't endure it, please seek real life help from someone who can actually do something, even if it means trying another kind of medication.

[Iggy131313]

Thankyou all for your support, petu you theory about the sun us very interesting, i know its due to flip upside down or something odd soon, my god, that will probably kill me off if this is the suns activity!!

 

But I feel instinctivly that this is the 5/6 month mark and thats what is causing this superwave, I just hope and pray it will pass, I mean, I look at this time last year I was the same as this, and then in march out of nowhere a wonderful wundow opened, until I f*****ed it all up missing the dose that day and was sent back into this again, im trying to hold on to that

 

Nikki, your intentions are good but I dont have anxiety and depression, I have severe akathisia, and no medication is going to help with that, others may not agree with me but I have severe brain damage caused by these meds, or the too fast removal off them, i know 6 poeple who have had a speact scan and the results are always the same, severe blood restriction to the frontal cortex and temporal lobes, no medication is going to cure that.

 

the only med i could possibly tolerate is a benzo, but they are not prescribed here for long term use, the most i could get is 2 weeks worth, and in the end I would kindle myself further, reach tolerance very quickly, I have read enough accounts of people trying other meds, and it doesnt work, it really does not work, not when your this far gone, all I can do cling desperatly to hope, but i dint know

 

yes HBOT is a possibility, I am looking more into it but am also scared, the woman who runs the hbot group says she healed herself from sever benzo withdrawal using hbot, and as the 6 people who have had a spect show blood restriction and brain damage then maybe it could help i dont know, im giving it till march and then i will make a choice then, i cant make any choices right now,  i cant remember yesterday and my confusion is severe

 

I have never come across someone who has had a a spect scan and it been clear, plenty of MRIs and CT scans, but never a spect, of course i only know 6 people who have had one, but for them all to have had the same results, it seems too much of a coincidence, i would like to have one myself but am too scared of the injection of radioactive tracer that they have to give you, if i react as i do to fish oil, i doubt i wold tolerate that very well

 

so another day in hell for me, hanging on, trying to think about others who have had it as bad as me and are making a recovery, trying to hold on to hope that no matter how long it takes at some point i will improve, even if i cant heal, I talking on the phone later with someone who is nearly 10 years off and still very very sick, but has made some progress over the years, i thnk, perhaps this person was as bad as I am, so im hoping speaking to them may calm me a little, even though it took them 5 years to start to see any signs of recovery

[Meimeiquest]

Hmmm, I got bad last year in November, better in March, now bad in November...maybe that says something else about the sun.

[Barbarannamated]

Hmmm, I got bad last year in November, better in March, now bad in November...maybe that says something else about the sun.

Also wondering if the Daylight Savings Time change has effected us, but not certain if the UK does that..?

[Iggy131313]

yes but we do it earlier than you guys, mid october, it effected me somewhat, but this is pure and simple severe brain damage, im in a world of pain and torment, unable to speak to my family, just moan and wail and cry and howl, 

[Wolfhound]

Hello !

I am new here. I see that you did not post last months, but if you look here, i would lke to ask you what type of acathisia you have.

your suffering is immense, i admire your strength.

best, w.

[Fizz]

Iggy, been thinking of you alot and wondering how you are. Fingers crossed things have been a little better and you're not suffering as much. Xxxxxxxx

[Iggy131313]

GiaK, may I ask why your not keen on the gene testing? Im considering having some but scared of the results..im also having a methylation profile done so please let us all know what Dr Kessler advises you, im sure it will be so helpful for any of us who have this issue. x

[Meimeiquest]

Hi Iggy, I saw your post on Methylation. I can see you are still very smart and thinking about lots of things. How else are you?

[Petunia]

Hi Iggy,

When you don't post 'anywhere', I wonder how you are doing, and hope that its better.  I'm glad you are still with us and looking for answers.  Has anything changed for you over the last few months?  If you are up to it, an update would be good.

 

Petu.

[Iggy131313]

oh, and cmusic, if you have the COMT gene mutation then methylfolate will have this reaction, there are suggestions on alternatives but i dont know enough about it to advise or even suggest..... Im interested in people opinions on gene tests, as I am wanting to have one and see if I can sort things out a little.

 

Im suspecting I have COMT, and MAO and MTHFR gene mutations, also I would stringly suspect a have the SOUX and CBS mutations meaning I cannot metabolise sulpher, its all a bit scary in one way, but good in another as it could be something to work on and even help, and MAYBE even heal

[Iggy131313]

Its now my guess that PGAD is related to massive levels of Nitric Oxide, I think this for 2 reasons..

 

1) that ssris are an NO suppressant, therefore we could have a massive rebound on coming off them...

 

2) I have spken to various people who have severe histamine issues who have reported having this....also histamine raises NO massivly

 

I have it, its awful, and I have spoken to many other people who have it, it has gone away for some of them, and alot of the people I have spoken to who have also experienced akathisia relate the sensation to that, as I do too.....in fact one male friend called it cockathisia, very apt....

 

and I have spoken with dr Goldmeier, he is USELESS, says this has nothing to do with the brain but the pudendal nerve...that might be true in some, but in the cases of ssri induced PGAD, its not damage to the pudendal nerve or tarlov cysts, its some kind of dopamine and/or nitric oxide issue IMO

[Iggy131313]

I agree with Alto that the MTHFR wont be responsible for our issues, however there have been many reports recently that pestiside exposure etc can lead to methylation dysfunction...and ssris seem to have the same neurotoxic effects as pesticides, thats certainly how shipko describes it...

 

the important thing here may be to get the mutations of all out genes, it might be that those of us with severe mutations have protracted withdrawal, nit the casue of the issue, thats the ssri, but something that is preventing healing from it...its been nearly 2 years for me now with minor periods of improvement that never last long, I am still houseridden mostly and often bed ridden and intensly suicidal due to the extreme suffering...

 

if I am +/+ for MOA and COMT that would explain things, its a possibility that kindling is that ssris change the gene itself so we can no longer metabolise serotonin and/or dopamine, but thats pure speculation....but surely methylation issues will compound this problem...also I have seen people posting about mitachondrial damage, and that ties in with methylation also..

 

I guess Im just desperate for there to be something to treat...

 

I did find a negative correlation between uric acid levels and symptoms, as I still belive that the NO/ONNO cycle is a big part of the problem, and peroxynitrite is in part responsible for this syndrome...uric acid is a potant scavenger of peroxynittrite.....that is also backed up by the fact that histamine increases NO and many people do better on a low histamine diet...I have just read that hydroxy b12 is a nitric oxide scavenger and Im wondering if i could tolerate it

 

but I am going to get the 23and me genetic testing done, and hope it might give me ome clues as what i should do

[Meimeiquest]

Iggy, If I were as sick as you, I would be pursuing this much more intensely. I am just having a regular, crappy withdrawal from too many drugs. I feel like the drugs I am still on make it impossible to know where I am health-wise. You're a different matter. Who are you working with?

[Iggy131313]

Im not working with anyone, I cant afford to, I cant work and my husband cannot work as he has to be there for our son, and apparently for me (doent happen) i want to belive that methylation could be a contributing factor but alto says its barking up the wrong tree and Im scared of spending the little money I might manage to save up on nothing

[Iggy131313]

i have no idea about ammonia, I eat organic only, mostly gaps, but without the fermented foods as im mindful of histamine, i take a great probiotic and fish oil....vit D I have seen harm alot of people in withdrawal so i wouldt dare try it,. epsom salts i had alot but now Im scared of upregulated CBS or SOUX mutations meaning i cannot tolerate sulpher...whats the deal with ammonia? its something to do with COMT right?

[Meimeiquest]

I think you know a lot more than I do! I really hope you fine something helpful.

[cymbaltawithdrawal5600]

Hi Iggy,

I am glad to see you are still with us. Things must be a tiny bit better for you that you are able to post again. You sound better.

[tezza]

I agree, you sound a lot better

[Skyler]

i have no idea about ammonia, I eat organic only, mostly gaps, but without the fermented foods as im mindful of histamine, i take a great probiotic and fish oil....vit D I have seen harm alot of people in withdrawal so i wouldt dare try it,. epsom salts i had alot but now Im scared of upregulated CBS or SOUX mutations meaning i cannot tolerate sulpher...whats the deal with ammonia? its something to do with COMT right?

Hey Caroline.. that's quite the diet you are on.. good stuff. Good to hear from you!

[btdt]

Its now my guess that PGAD is related to massive levels of Nitric Oxide, I think this for 2 reasons..

 

1) that ssris are an NO suppressant, therefore we could have a massive rebound on coming off them...

 

2) I have spken to various people who have severe histamine issues who have reported having this....also histamine raises NO massivly

 

I have it, its awful, and I have spoken to many other people who have it, it has gone away for some of them, and alot of the people I have spoken to who have also experienced akathisia relate the sensation to that, as I do too.....in fact one male friend called it cockathisia, very apt....

 

and I have spoken with dr Goldmeier, he is USELESS, says this has nothing to do with the brain but the pudendal nerve...that might be true in some, but in the cases of ssri induced PGAD, its not damage to the pudendal nerve or tarlov cysts, its some kind of dopamine and/or nitric oxide issue IMO

Could you tell me what you mean by NO please?

[lundeliz]

I have no understanding of this, but from reading through it, NO apparently means Nitric Oxide.

[btdt]

Thanks I am going to see what I can learn about it.

" produced naturally during the electrical discharges of lightning inthunderstorms.

In mammals including humans, NO is an important cellular signaling molecule involved in many physiological and pathological processes.^[4] It is a powerful vasodilator with a short half-life of a few seconds in the blood.

, NO is an important biological regulator and is a fundamental component in the fields ofneuroscience, physiology, and immunology, with discovery of its key roles leading to Nobel Prize-winning research in these areas. It was proclaimed “Molecule of the Year” in 1992

http://en.wikipedia.org/wiki/Nitric_oxide

Did a quick read of this and think there are clues all over this article in how it could relate to a lot of our troubles.  Could be a part of it small or large... could be yet another wild goose chase but I am use to that.

 

Science relating to NO

http://www.sciencedirect.com/science/journal/10898603 

 

1. Antidepressant - Wikipedia, the free encyclopedia

   en.wikipedia.org/wiki/Antidepressant‎

   •  
   •  

    

   Antidepressants are drugs used for the treatment of major depressive disorder .....Moreover, SSRIs inhibit nitric oxide synthesis, which leads to vasoconstriction. ... of these drugs largely derives from their suppressant effects on REM sleep.

    

   Places to start if anyone else is interested in taking a look at this I am... seem to be a bit hit and miss lately so not sure when... soon I hope. 

[btdt]

" endothelial nitric oxide (NO) during acute vascular response to hypoxia, as a modulator of both vascular tone (through guanylate cyclase (sGC) activation) and mitochondrial O₂ consumption"

 

 in vessels in function of the concentration of O₂: as O₂ falls, NO inhibition of mitochondrial O₂ consumption increases and activation of sGC decreases, thus promoting a rapid increase in tone in both pulmonary and systemic vessels, which is followed by the triggering of NO-independent vasodilator/vasoconstrictor mechanisms.

http://www.sciencedirect.com/science/article/pii/S1089860313003479

 

What I think it means.  

I know that after prozac I was dx with chronic fatigue /fibro. 

In chronic fatigue it has been suggested the mitochondria cannot use the oxygen properly and so you can't function due to cell dysfunction.  Pain fatigue and inability to think clearly and sleep are some of the symptoms. This is what I know already from 20 plus years of dealing with this. I could look some things up and put some links here if that would help others if I the information is still available (I will tell you and everyone else I have found articles often scientific articles that disappear off the internet soon after I find them... I started making copies of what I found long ago for this reason have had loss of info due to computer metl downs if i were just one bit more paranoid than I am I would suggest here that somebody does not want this known and goes to extremes to see that it isn't known) done rant. 

NO may be what is causing the mitochondria to fail by the looks of it they still don't have it figured out. 

 

I have had so many symptoms going cold turkey it would be a long list... I do not know which symptoms could be related to the mitochondria.  I do however suspect these symptoms can gradually improve over time as the body tries to heal this system.  In chronic fatigue/fibro it would have to be said if this is the cause the healing is incomplete as people suffer with this particular disorder for a lifetime. In my experience the symptoms vary. 

 

Part of my Effexor cold turkey melt down was not being able to breath.  I  could not lay down sat up to sleep for a very long time.  At one emerg visit a respiratory specialist was called in to evaluate me he told me I had chronic obstructive pulmonary disease ... I just looked at him and said no I don't.  That COPD is a gradual ongoing lung disorder this came on quickly and I suddenly can't function can't breath laying down ect... I was in no shape to argue and just gave up... they treated the symptoms as usual.

I will be looking at this more as time goes on trying to understand the long term effects and how they may be overcome.

One of the key treatments used to treat chronic pain and fatigue of this disorder is exercise and relaxation ... It is in no way a cure I think a cure is still possible. Whatever the breathing issue I had in cold turkey they were for sure in my view related to withdrawal not some ongoing lung disorder. COPD does not improve what I had did improve. There were many other symptoms I had at the time.. this is just one.  

[btdt]

Its now my guess that PGAD is related to massive levels of Nitric Oxide, I think this for 2 reasons..

 

1) that ssris are an NO suppressant, therefore we could have a massive rebound on coming off them...

 

2) I have spken to various people who have severe histamine issues who have reported having this....also histamine raises NO massivly

 

I have it, its awful, and I have spoken to many other people who have it, it has gone away for some of them, and alot of the people I have spoken to who have also experienced akathisia relate the sensation to that, as I do too.....in fact one male friend called it cockathisia, very apt....

 

and I have spoken with dr Goldmeier, he is USELESS, says this has nothing to do with the brain but the pudendal nerve...that might be true in some, but in the cases of ssri induced PGAD, its not damage to the pudendal nerve or tarlov cysts, its some kind of dopamine and/or nitric oxide issue IMO

I found this on pp...

http://psy.psychiatryonline.org/cgi/.../full/40/3/268

 

Here s an article on how SSRI'S decrease levels of nitric oxide synthase. My therapist and I are thinking there might be some kind of connection. There are several articles about the interplay between Nitric Oxide, Dopamine, seratonine and other neruotransmitters. 

posted by someonehelp8

http://www.paxilprogress.org/forums/showthread.php?p=678604

 

The link posted is 404 no longer available.  Do you have another source for science to back up this statement. 

"

 

1) that ssris are an NO suppressant, therefore we could have a massive rebound on coming off them..."

[Iggy131313]

what that nitric oxide is surpressed by NO? Healy told me and there is alos loads of info out there on it

 

another thing about NO is that histamine causes NO release, this could be why we have histamine issues but not classic histamine symptoms

 

Im in hell, I have been severe severe for weeks, unable to speak to my family or move, i scream out loud at the akathisia and anxiety, im hallucinating both auido and visual, i can feel my brain dying, no one can tell me im not the most severe case ever seen, as they dont have to live my life or feel what i feel...

 

i would take this kind of severity if it was a kind of illness where i could lay down and just feel like im going to die, but this I cannot find peace anywhere 2 years of this, no breaks, i want to die and beg for death everyday

 

i do think NO plays a part, not everything but i feel its one of the very very dangerous free radicals that add to out issues, more of the NO/OONO cycle and peroxynitrite being the main problem, but NO brings its own symptoms and problems, like the pgad

 

i pray to god that he takes merccy on me soon and lets me die, I have spoken with dignitas who will accept me if i get a letter saying im of sound enough mind to make this desicion, healy hasnt decided if he will provide me with this yet..and i dont have 5000 to spend on it, but hopefully one day my dream will come true and i will be allowed to die a death in peace and with dignity with people i love with me at the end, its all over for me

[Muddles]

I'm so sorry Iggy. I am in truly heart broken for you. Akathisia is a terrible, torcherous condition.

I cannot describe the feeling to anyone, because simply ...there are no words.

 

I pray for you, like I pray for everyone suffering like this. Our children ...extra prayers for them.