☼ Rbvdk: PGAD/PSSD or OCD?

[Rbvdk]

51 minutes ago, Driksdog said:

Hi! 

No I don't think smoking was coincidence. I had a worsening before from it and I quit there. So I got better in 4 month. Then I was so stupid and did it again. I don't really got windows and only a very tiny gradual improvement. The worst is the aphaty and then weakness. Also headpressure and feeling like I got antz on my back. This are also symptoms I never had before. So it's a bit similar to u. 

I can't imagine to get out of this ever. My old life is light-years away now. Good to read u got windows. Sorry I can't say more to ur situation because for me it's also a big misery and a daily torture. Hope u got relief soon. 

Greetings dog 

 

Hi!

Oh I see In those 4 months was your healing slowly gradual or almost sudden? Just wondering what the difference between then and now is for you, because maybe you will heal again soon but it's just taking a little longer.

It's really hard to imagine getting out of it, but you will, just like last time. You've felt hopeless before and still had good days to come, it's like that now too. And the fact you have some improvement is a good sign that you are going to heal. Not everyone gets windows, some people just have gradual improvement.

Just remember you're not alone. You're always welcome to message me, here or in the PMs, even if it's just to chat. And thank you, I hope you get relief soon too.

Take care!

[Driksdog]

Hey! 

It was first slowly then very big improvements in a few weeks. And then the big shoot down last Dec. 

Thank you so much for ur words. It's really hard to live in a med harmed world. I lost nearly every thing on this sh.. And it's getting lonelier here. 

Also my therapist finally don't want to treat me longer because he doesn't know how he could help. That's how the psycho system spits u out at the end of it. Better never see one of those a....... 

Greetings 

[Rbvdk]

31 minutes ago, Driksdog said:

Hey! 

It was first slowly then very big improvements in a few weeks. And then the big shoot down last Dec. 

Thank you so much for ur words. It's really hard to live in a med harmed world. I lost nearly every thing on this sh.. And it's getting lonelier here. 

Also my therapist finally don't want to treat me longer because he doesn't know how he could help. That's how the psycho system spits u out at the end of it. Better never see one of those a....... 

Greetings 

I hope this means you'll also get very big improvements this time very soon! Did you ever get a crash/bad wave at any point during those 4 months last time? Or was it only at its worse in the beginning? (Just wondering as I'm hoping mine will only last a few months but now I'm suddenly feeling worse which makes me worry it's gonna take forever 😞)

 

Thats awful ! I'm so sorry. 😥 I'm currently seeing a therapist but it's purely for PTSD. I had a mental health support worker helping me deal with the PGAD but she discharged me once I got better, but sadly that was literally JUST as I got worse again, ugh!

[Driksdog]

Hi again! 

I recognize very well now my symptoms since I quit lithium. I was better last spring. Means in emotional way and I got power. But I still smoked there. Then it went worse till August. There I quit smoking and I improved slowly over 4 month. In Nov last year I arrived a good state comparing to before. Then I f....ed it up

Idk. In this 4 month I also felt sick and not normal but it wasn't such a torture. No bigger waves or any waves in this time. 

Greetings 

[BfromNJ]

5 hours ago, Rbvdk said:

Last night was horrible.. woke up from a spontaneous orgasm. I've had these before when I last had pgad but it was usually early morning 3-6am and happened very rarely and usually only just before my period and I think sometimes during ovulation. Whereas I'm neither of those things and this happened at 11pm. My bladder became irritated and spasmy, I was flaring badly until almost 2am before I finally fell back to sleep. Woke up this morning and the flare is back again.

Worst part is, it's my birthday, and I already have a lot of emotional issues around this time anyways so this actually just drove me to the point of considering suicide for the first time in a long while.

 

It's almost been 3 months since I got this back and it's never been this bad. I don't think it was even ever this bad last time. I am getting windows thankfully (5 days each time so far), but the waves are longer and this wave is 10x worse than the last ones. What does this mean?? Am I going to continue getting worse?? Please someone tell me it doesn't get worse, I can't cope like this. 😢 I've never had such bad pgad... I'm terrified I'm going to start getting spontaneous orgasms 24/7 and be in absolute agony... the worst part is, nothing relieves it!!! And I don't dare take any kind of medication. I have PTSD from the last times that I had it and I can feel myself being traumatised by this time too. 😢

Oh I'm so sorry.   I am in the same boat right now with a terrible wave and flare.  I had a spontaneous O myself night before last.   I remember dreaming something and the O came on.  And I've been worse since. I know this can happen to people who don't have pgad but being we do I am so scared myself.  This happened to me two other times in the last two months.   So I understand what you are feeling.  I have no hope. 

[Rbvdk]

1 hour ago, BfromNJ said:

Oh I'm so sorry.   I am in the same boat right now with a terrible wave and flare.  I had a spontaneous O myself night before last.   I remember dreaming something and the O came on.  And I've been worse since. I know this can happen to people who don't have pgad but being we do I am so scared myself.  This happened to me two other times in the last two months.   So I understand what you are feeling.  I have no hope. 

I'm so sorry to hear that, it is very scary 😢 Yeah people without any pgad issues can get them so it is normal in a way, pgad just makes it happen more frequently. It definitely feels hopeless, especially when you're in the stage of it getting worse rather than better, but soon it will start calming down and these things will come and go in waves and windows. Even during my worst year, I did start getting some improvements. It just happens so slowly that you don't even notice it happen so you're stuck in the "nothing has changed" mindstate. 

 

Just wondering, have you found that different symptoms of pgad have their own patterns? Like for example, the sensitivity will go through a window but the arousal feeling itself could be going through a wave. Or, I remember I'd get frequent night SOs while the other symptoms were going through windows. I always thought it was weird, I assumed it was all one condition that would all flare or chill at the same time.

[BfromNJ]

34 minutes ago, Rbvdk said:

I'm so sorry to hear that, it is very scary 😢 Yeah people without any pgad issues can get them so it is normal in a way, pgad just makes it happen more frequently. It definitely feels hopeless, especially when you're in the stage of it getting worse rather than better, but soon it will start calming down and these things will come and go in waves and windows. Even during my worst year, I did start getting some improvements. It just happens so slowly that you don't even notice it happen so you're stuck in the "nothing has changed" mindstate. 

 

Just wondering, have you found that different symptoms of pgad have their own patterns? Like for example, the sensitivity will go through a window but the arousal feeling itself could be going through a wave. Or, I remember I'd get frequent night SOs while the other symptoms were going through windows. I always thought it was weird, I assumed it was all one condition that would all flare or chill at the same time.

Im not sure I notice that, although sometimes I have just urinary urgency which could just be that and not pgad.  Have you gone to doctors or anything to see if you maybe have it from something else other than the meds?  Such as nerve entrapment, etc?  I had it two years ago.  Coincidentally after a long bike ride, but around that same time I also made a large reduction in my med.  Recently, I had a fall and hit my tailbone hard.  But also reduced the med.  So I am not sure?  I feel so helpless.  Now I am working on splitting my med dose and hope that change does not mess me up.  But I am told its considered a minor change and should help because I may be in interdose withdraw.  

[Rbvdk]

7 hours ago, Driksdog said:

Hi again! 

I recognize very well now my symptoms since I quit lithium. I was better last spring. Means in emotional way and I got power. But I still smoked there. Then it went worse till August. There I quit smoking and I improved slowly over 4 month. In Nov last year I arrived a good state comparing to before. Then I f....ed it up

Idk. In this 4 month I also felt sick and not normal but it wasn't such a torture. No bigger waves or any waves in this time. 

Greetings 

Withdrawals are so confusing I hope you still recover quickly.

Take care!

[Rbvdk]

2 hours ago, BfromNJ said:

Im not sure I notice that, although sometimes I have just urinary urgency which could just be that and not pgad.  Have you gone to doctors or anything to see if you maybe have it from something else other than the meds?  Such as nerve entrapment, etc?  I had it two years ago.  Coincidentally after a long bike ride, but around that same time I also made a large reduction in my med.  Recently, I had a fall and hit my tailbone hard.  But also reduced the med.  So I am not sure?  I feel so helpless.  Now I am working on splitting my med dose and hope that change does not mess me up.  But I am told its considered a minor change and should help because I may be in interdose withdraw.  

I've had a CT scan, an MRI of my whole spine, and X-Ray of my pelvis and multiple gyno and other specialists appointments and everything is normal apparently. I definitely hadn't done anything to damage that area the first time I got pgad symptoms, the only thing that happened was coming off Paxil. When I got it the 2nd time after coming off citalopram (which is when I had the scans etc), just before the pgad hit again, I did have some type of injury there, but the scans etc picked up nothing. It's healed now anyways. But considering I've gotten it 3 other times without any injury just shows it was a coincidence I think. Maybe it could make it more sensitive at worst though.

Good luck with your tappering!

[BfromNJ]

26 minutes ago, Rbvdk said:

I've had a CT scan, an MRI of my whole spine, and X-Ray of my pelvis and multiple gyno and other specialists appointments and everything is normal apparently. I definitely hadn't done anything to damage that area the first time I got pgad symptoms, the only thing that happened was coming off Paxil. When I got it the 2nd time after coming off citalopram (which is when I had the scans etc), just before the pgad hit again, I did have some type of injury there, but the scans etc picked up nothing. It's healed now anyways. But considering I've gotten it 3 other times without any injury just shows it was a coincidence I think. Maybe it could make it more sensitive at worst though.

Good luck with your tappering!

its really maddening, trying to figure out where it came from and the "what ifs".  at least you are off your meds.  I am holding right now, but I am doing a dose split.  So that is a change but a minor one I am told.   

[Rbvdk]

I had a huge window with pgad in September but now it's slowly creeping back. I'm scared because I've been waking up from spontaneous orgasms lately which I didn't get at first. I feel like this is a sign I'm getting worse. Like last time when I was off Citalopram, it kept getting worse until suddenly becoming absolutely unbearable around the 6 month mark and it stayed like that for 2 years. I'm hoping that that doesn't happen this time since I was only smoking weed for 5 days and I'm assuming/hoping that I won't get protracted withdrawals from that. I try to tell myself its just an aggravation or effect so it won't act like the withdrawals - even though it already is so far.

 

Also the anxiety and panic have gotten much worse. At first it was just a sense or darkness and disturbance mainly at night or morning, now I'm feeling it throughout the day and I had such a bad panic attack that felt so bad physically I can't tell if it was some form of akathesia. I've been doing nothing but reassuring myself that it isn't, I'm terrified of akathesia to the point where if I think I have it for a moment, I'll panic and become suicidal. I keep getting these random panic attacks out of nowhere ever since. 

 

On a more positive side, I've started meditating an hour a day, I'm hoping to see some improvements from it. I'm also going to go low carb for a while as this does amazing with anxiety (just difficult to do when you're too much of a mess to cook). I found whimhoff breathing helped the pgad at night for a long time although these past 2 times it didn't. I feel like I'm going crazy.. I just want to be normal.

[Driksdog]

Hi Dog here! 

I saw ur Posts. I am also still total out of order. 10 month later. I started to think I really destroyed something. It's like cfs. I got zero energy all days, headpressure, no emotions, dizziness.... 

I am idiotic to smoke again. Seems like my brain can't swing back now. Sorry for ur changing and that I can't say better thinks. I mean it is not that worse like it was month ago but the symptoms are all still there. And the point is I didn't took meds again. I smoked 4 weeks. I do not understand it. 

Hope it's getting faster for u. 

Greetings dog 

[Rbvdk]

54 minutes ago, Driksdog said:

Hi Dog here! 

I saw ur Posts. I am also still total out of order. 10 month later. I started to think I really destroyed something. It's like cfs. I got zero energy all days, headpressure, no emotions, dizziness.... 

I am idiotic to smoke again. Seems like my brain can't swing back now. Sorry for ur changing and that I can't say better thinks. I mean it is not that worse like it was month ago but the symptoms are all still there. And the point is I didn't took meds again. I smoked 4 weeks. I do not understand it. 

Hope it's getting faster for u. 

Greetings dog 

I'm sorry you're still feeling bad it's a good sign you're feeling a little better than last month, sometimes progress is slow and then sometimes recovery can happen suddenly too.  I hope you recover soon.

 

I'm doing ok, thank you, my pgad has actually calmed down a lot although this month I've felt it a lot in my sleep. My main issue right now is the feeling of constant adrenaline, mainly in my back. It feels like a panic attack but only affects me physically. It's triggered by anxiety but it doesn't go away even when I'm calm and it can last up to 3 days. I feared it was akathesia at first but I don't relate to the description of it, I have no nerve pains, it doesn't affect my legs and I don't feel the need to move at all, in fact, I feel like I need to go in fetal position and cover myself as if I'm in danger. Sometimes it'll come with a deep sickness in my stomach too and a racing heart and breathing and swallowing difficulties. It sounds like a panic attack but I've suffered with panic attacks all my life and I've never had anything like this before. I think I have an adrenaline problem, maybe.

[Driksdog]

Hi! 

Nice u feel better. For me it's like I got zero neurotransmitters. No anxiety or panic here. Also no other emotions. I am really like a zombie robot. 

Greetings 

[Rbvdk]

After looking at others experiences, I think I actually do in fact have akathesia. It's in my upper body and is a constant feeling of adrenaline, agitation, restlessness, like a tickling and my body is screaming, I just want to jump out of it. I don't really feel like I need to move though, but sometimes I think rubbing my back will help but it just makes it worse. If this is akathesia I'd really love some insight because I'm confused about how I got it. Can anyone help, please?

 

I've read there's 4 types of akathesia:

Acute akathesia that comes on from taking a medication

Persistent akathesia that carries on even after discontinuing the medication that caused it

Tardive akathesia that comes on after at the very least 6 weeks of taking a medication

Withdrawal akathesia that comes on within a week of lowering of quitting a dose 

 

Where do I fit in? I smoked weeks for 5 out 9 days and although I had anxiety, dysphoria, insomnia, panic attacks (which are a sign of akathesia), I didn't get any physical symptoms of it until it suddenly hit me 3 months after my last smoke. I'm torn between if it's tardive (although I was no longer smoking) or withdrawal that's just suddenly spiked up (which is a common withdrawal pattern for me)?

[Rbvdk]

My akathesia is more frequent and constant now. Intensity is about the same though I think. It feels like my body is constantly having a panic attack and my back gets like inner chills or something. I don't know what to do. PGAD is still mostly ok but I am going through a mildish wave at the moment. Both times I withdrew off citalopram I was hit badly at the 5-6month mark, I'm terrified that this is a sign that it's going to happen again even though I really thought it was just an agitation caused by weed that would have calmed by now. I'm so sick of it and hate myself for smoking. I can't find ANY success stories on tardive akathesia at all, I'm going to have it forever. I feel so so alone.

[Driksdog]

Hi! 

Still in a similar place. Feels like a severe nerve damage. Sorry I can't say something different. Hope the best. 

Dog

[Rbvdk]

9 minutes ago, Driksdog said:

Hi! 

Still in a similar place. Feels like a severe nerve damage. Sorry I can't say something different. Hope the best. 

Dog

 

Hi! I'm so sorry you're still feeling bad too. Thank you for keeping me updated, it's nice to know we're not alone. I hope you start feeling better soon. Take care!

[Rbvdk]

 

My weed-induced journey so far (so I can look back and keep track) :

 

June - PGAD, all day flares, morning flares, stressful sleep (mild mental akathesia), panic attacks, digestion issues

July - worse

August - much worse

September - much better but physical akathesia started (feelings of a panic attack, mainly in back)

October - PGAD back but mostly at night

November - PGAD calmed a little, mental aka amped up

December so far - night PGAD wave, bad sleep back, worse and more frequent mental aka, physical aka changed (inner restlessness, agitation, impulse feeling in upper body)

 

Edited December 19, 2021 by ChessieCat
added link to original post about weed to give post context

[Rbvdk]

Think I now have tardive dyskinesia, it's mixed with my akathesia, in my hips, forehead and eyes. Isn't dyskinesia permanent? Especially if it's a delayed withdrawal? I think I want to give up...

[Rbvdk]

I know it's somewhat pointless to post in here but here's a mostly positive and sorta negative update:

 

The akathesia is much better, physically I don't really get it at all anymore, mentally I still have moments of the dark terror feeling, but usually it's mild and doesn't last long.

Dyskinesia is pretty much completely gone.

PGAD is still calming but can still flare up randomly usually with hormones or anxiety.

Anxiety/panic is still bad but just not as bad as when it started.

Still have moments of clinical depression, which I never had before the weed.

 

Negative is, even after 4 years, I STILL get headzaps, especially when I'm sick, but even just if I oversleep. It's weird.

[Driksdog]

Hey! 

It isn't pointless. Good to hear from u. Seems like u getting a bit better. I was better in January. Sadly the mess also goes on here. 

I always get agree when I think about this. This pdocs claimed to help us. Now we are out of order. 

 

What do u think how long ur road to recovery is? U really felt total normal before the weed? F...! 

Greetings 

[Rbvdk]

2 minutes ago, Driksdog said:

Hey! 

It isn't pointless. Goid to hear from u. Seems like u getting a bit better. I was better in January. Sadly the mess also goes on here. 

I always get agree when I think about this. This pdocs claimed to help us. Now we are out of order. 

 

What do u think how long ur road to recovery is? U really felt total normal before the weed? F...! 

Greetings 

Hi!

Thank you 🙂 It's good to hear from you too!

 

Almost totally normal, I still had very mild PGAD from my withdrawals, but my anxiety was the lowest it had been in all my life, and I never had clinical depression before. Now after weed, my anxiety is back quite bad, I have clinical depression, and also heart and muscle problems that I never had before (POTs and fibromyalgia). I'm really hoping they'll go away too.

I think I'm maybe half way through my recovery, it's hard to say though. How about you? How's your recovery going? 🙂

[Driksdog]

Hey! 

Idk. I behave like an idiot from time to time. I felt that's thinks get better around new year. Sadly I drunk alcohol again.  This gave me another impact. I thought my last crash was just from smoking. Now it's clear that any druguse can have a big effect. 

My biggest issues are aphaty and weakness. No panics no anxiety. I am frustrated all the time because of this state. Also a bit heart trouble specially in the morning when waking up. I hope with absolutely clean straight edge lifestyle this sh.. will slowly lift again. No idea how long it will take. 

Best wishes 

[Rbvdk]

34 minutes ago, Driksdog said:

Hey! 

Idk. I behave like an idiot from time to time. I felt that's thinks get better around new year. Sadly I drunk alcohol again.  This gave me another impact. I thought my last crash was just from smoking. Now it's clear that any druguse can have a big effect. 

My biggest issues are aphaty and weakness. No panics no anxiety. I am frustrated all the time because of this state. Also a bit heart trouble specially in the morning when waking up. I hope with absolutely clean straight edge lifestyle this sh.. will slowly lift again. No idea how long it will take. 

Best wishes 

I'm so sorry to hear that, that's so surprising and frustrating 😞 I was considering trying alcohol again but now after reading this, I think at this stage we're just too sensitive for any type of substances and we might have to stay clear of it all for a long while.. 😞 I was 3 years free from any AD and still ended up in with a bad crash just from a few days of weed. I wonder how long it'll take for our bodies to finally be completely healed from all this.

I wish you the best of luck and I'm here if you ever need to talk/vent.

Best wishes!

[Driksdog]

Yeah sensetive like hell. I also found this very old page recommended by ThommyG in success stories. This guy came off PROZAC, I think in the early '90s he said "don't think when the better days arrive u can charge ur system like u always did before. It will give u a major sert-back!!"

Here we go..., exactly what happened to me. Sh....... 

 

[Driksdog]

Problem with alcohol is... It acts on serval transmittersystems like opiate, gluta/ gaba, Dopamin and serotonin. It's an kind of dirty drug and neurotoxin. Better avoid it in our state. 

 

[Rbvdk]

3 hours ago, Driksdog said:

Yeah sensetive like hell. I also found this very old page recommended by ThommyG in success stories. This guy came off PROZAC, I think in the early '90s he said "don't think when the better days arrive u can charge ur system like u always did before. It will give u a major sert-back!!"

Here we go..., exactly what happened to me. Sh....... 

 

That's true, although it definitely gets lots better. Between the 2-3 year mark, I was able to drink alcohol again without issues (and I drank a LOT a few times a week). That's why I was surprised when the weed got to me (I thought I was recovered enough to have no more severe consequences). But I think each set-back makes you more and more sensitive to new things possibly? I don't think I'd be able to get away with drinking how I used to anymore. It really sucks.

[Rbvdk]

I'm not sure if many people still follow here but is there someone that can give their opinion on this please? 😞

 

4 days ago I visited a friend who was smoking weed in their garden with the backdoor open, I was in the house a small room distance away and could smell it. When I got home I was very ill with a fever (my family have a virus and I was pretty lucky till this point). That night my PGAD flared for no reason (just like it did when I smoked weed last year), then in the 4 days I've been getting more intense flares AND long-gone symptoms of my akathesia has been coming back, even though the virus is much better today. I had very severe headzaps during the first 2 days (since citalopram WD in 2018 I've had them mildly when tired or sick but never this bad). Today my obsessive anxiety and a constant feeling of panic have come back.

 

I read that covid can bring back akathesia but I tested negative for it. Could it have been because I could smell the weed while my friend was smoking it outside? Is that actually possible? Or can viruses cause a set-back this badly?

 

Thank you in advance!

[Driksdog]

Hey! 

Sounds sh.., I am sorry. I couldn't imagine just smelling weed does anything. For covid I read many times the virus also acts on the brain also its hard work for ur immunsystem. Are u vaccineted? I also had the virus. It was 10 days more suffering then normal wd. 

But I was vaccined 2 times. Maybe some ppl can give u better answers. 

Best wishes 

 

[Rbvdk]

On 4/12/2022 at 5:53 PM, Driksdog said:

Hey! 

Sounds sh.., I am sorry. I couldn't imagine just smelling weed does anything. For covid I read many times the virus also acts on the brain also its hard work for ur immunsystem. Are u vaccineted? I also had the virus. It was 10 days more suffering then normal wd. 

But I was vaccined 2 times. Maybe some ppl can give u better answers. 

Best wishes 

 

Hey! Yeah hopefully not, it's an annoying coincidence because I won't really know for sure what's really causing this. I've never had a virus cause a relapse before, but then I read covid can cause it.

I'm not vaccinated because I was too anxious (I heard it can cause flare ups). So your withdrawals were worse in those 10 days and then it went back to normal?

 

Best wishes

[Rbvdk]

@Altostrata please can I change the name of my thread? To "akathesia and pgad"?

[Altostrata]

It's fine to leave it the way it was when you started.

[Rbvdk]

3 hours ago, Altostrata said:

It's fine to leave it the way it was when you started.

The title hasn't really been relevant for a long while and was more a starting question which in hindsight was a bad idea lol And I'm really hoping to get more insight for the akathesia. Hope it's not too much trouble, I don't know much about forums tbh lol

[Driksdog]

Hey! 

I don't know anything about akathesia. Thanx God I never got it. 

Covid doesn't worsen the WD symptoms but gave me the covid once for around 10 days. I was afraid of the vaccination too. But what scared me more was longcovid on top of medf......! 

I hope u can improve soon. I think I am what they so call WD stable. But it isn't really a good life. 

Happy Easter

[Altostrata]

Sorry, we don't usually change the Introductions topics titles, or we'd be changing them all constantly. We'd rather spend our time helping people taper.