Jump to content
Rbvdk

Rbvdk: PGAD/PSSD or OCD?

Recommended Posts

Rbvdk

hey just a sad update. :(

So I think the pgad did start in August very mildly so believed it could be psychsomatic but there were points where it was like "hm that isn't a normal psychsomatic pattern". And the feelings were getting stronger and stronger each month. I still tried to hold the belief of psychsomatic even after the spontaneous orgasm and the unbearable worsening of it each month to the point everything was swollen and lubricated, throbbing, burning and if I so much as moved I felt an orgasm coming on. But last week my sister who withdrew from citalopram at the same time as me just told me she also has PGAD and hers is getting worse each month.

 

We realised the worst was during ovulation and so I went on a group for people with PGAD and saw they have the same pattern. What we don't understand is why are we getting worse each month? Is this normal recovery or is this just the begninning of pernemant pgad? We can tell it's definitely hormonal since we all have the same flare times during the menstrual cycle. Some people feel a bit better on the birth control pill which gives oestrogen and progesterone. I don't think it's because of lack of those things though since people in menopause don't have oestrogen and not all of them have PGAD. We do know that antidepressants increase oestrogen though.

 

So yeah, I'm feeling awful. Fearing something for 2 years and then getting it for real is like torture enough. If anyone is reading this, if we're getting worse each month then is there any hope of us getting better? There's no windows, more like, times in the menstural cycle where it's less intense. Maybe I'll know a window when I have a good day on an ovulation day. But is there any hope for us if we're just worsening? :(

Share this post


Link to post
Rbvdk

Hi, I hope someone sees this :P I'm worrying because I'm still getting head zaps/shocks 1 year since I started tappering. I only get it in the night and morning when I have a cold or before my period but this time my period is almost over and I'm still getting them. I'm worried they'll never go away I just can't believe they're still there after so long.

 

Update:

My tinitus is a million times better/non-existent although it is there in those mornings with the headzaps.

 

My pgad is much better, especially in Janurary it was very rare and easy to control - only flaring with anxiety and a bit before my period. This month/cycle I had about 3 unprovoked flares during ovulation (but I had the flu which is a trigger itself) and 1 before my period but besides that I was pretty much completely fine. I started going for walks again, went to town a couple of times which was my ultimate goal. Went in the car once (out of desperation to get home the second time because of symptoms) but I'm happy I did it. And I've started having sex again without any after-flares except twice when I was anxious! I think I'm only able to do it after ovulation though because I still swell before and during ovulation so I don't wanna mess with that lol.

 

I think the most annoying symptoms lately is definitey this extremely itchy hypersensetive bladder feeling I get when I walk too much (although I think it only happens before my period) even when I'm not about to be on my period though, I still have discomfort in the urethra and sometimes bladder. My urethra will feel so full and heavy (Maybe swollen?) And I still get the what feels like a muscle spasm of sometime kind after I pee. I don't know if it's related to pgad but it started 1 week (during period) after withdrawing but also after months of stress.

Share this post


Link to post
ChessieCat

It would seem that we have our own "weaknesses" when it comes to what withdrawal symptoms we get.  My own withdrawal symptoms seem to be mostly related to irritability and head and ears, pressure, pain, foggy headedness.  It might be that yours is brain zaps.

 

Have you tried Magnesium and/or Omega-3 Fish Oil .  Try a small amount one at a time to see how you respond to them.

Share this post


Link to post
Rbvdk

Thanks I hope that's all it is, that does reassure me. :) I wish I saw this sooner but I'll try magnesium out (I try to eat a lot of fish for omega-3 because I have a fear of taking supplements/anything).

 

 

Just an update on my PGAD: 

My PGAD is acting pretty weird. It started as soon as I lowered my first dose but I assumed it was anxiety because of 2016's experience. I would rate it about 3/10 at most in general. By October it was getting hard to ignore and all hell broke lose after a spontaneous orgasm, I was then getting it 9.5/10 (I consider 10/10 an orgasm) a lot of times and my average was maybe 6/10 or 7/10.

 

By late December I decided to do something about it (I'll make a list in the PGAD thread for anyone else who is suffering from PGAD) and it reduced massively, I'd say my average was 0/10 symptom free but when anxious it would hardly reach 3/10. It started getting better and better, my hypersensitivy finally went away which I had since June 2018. By March I was almost completely better then I made the stupid mistake of having too much sex with my husband (well I say too much but it was just once a day for 3 days in a row) I also got sick and super stressed and anxious about an upcoming event.

 

My symptoms went back to averaging about 6/10 and hypersensitivy came back, I was house bound again. I think it's getting slightly better now that ovulation is over but it's disheartening to go from almost cured and almost no flares even during ovulation and pms to feeling almost the worst I've felt again. I think the weirdest thing is that after having sex again my symptoms have gone back to being practically gone again but it has only been 4 days and it could just be because ovulation is over, still kind of interesting.

Share this post


Link to post
Rbvdk

My headzaps are gone! Well for the first time I didn't get any before my period - which is the only time I get them. The muscle spasms after peeing have almost completely gone too (I didn't even notice when that started getting better but I first noticed I wasn't getting any even before my period which is also the worst time for them!) 

Digestion is still the same (fine except yellow and undigested bits in stools). Hypersensitivity in uterus has gone completely and hypersensetivity in bladder pretty much gone too. Frequency is going away. The arousal/PGAD on the other hand is getting super confusing. I'm going through a bad time with it again and I made this chart to help me figure it out/keep track better. I know April isn't over yet but they aren't completely about each month (for example, the first few days of March were amazing but the rest was very bad, so I merged the good days with February's score, the months are more like a guide than actually rating each month exactly, but as you can see, the symptoms seem to be getting worse and I'm scared.

blank.png

Share this post


Link to post
Rbvdk

Trigger warning this is super depressing.

 

Scratch that last chart, I'm feeling worse than ever, I was in denial but even since January the pgad is getting easier and easier to trigger. This month is hell and the pgad has actually become painful today like a toothache pain in the urethra which I'm freaking out about. I'm having a huge panic attack and I'm getting more suicidal by the day. I'm getting worse. And the spasms after I pee are back just to rub it in my face that I've made no progress. I called my sister who had pgad and she won't even talk to me, she just told me to go a&e as if that doesn't freak me out even more. I'm probably going to be updating this a lot just with rants, its the only place I can talk, everyone else just ignores me or gets mad or tells me its not real.

Share this post


Link to post
Rbvdk

It was a year ago on the 19th I tappered to 0. I can't say there's much improvement. My headzaps and urethra spasms seemed like they were improving but have come back worse than before, same with the pgad (it never went away but it started to become manageble) now that's come back worse than ever. Am I the only one who has actually gotten worse over time? I don't think this is normal and I'm scared.

 

I've tried supplements but they don't seem to be doing anything, I worried they might have even made it worse. I'm trying to get the vitamins through food instead. I think the only thing that's been slightly helping is a keto diet. My anxiety reduced a lot and it calmed what felt like overactivity in my brain that would cause sudden pgad flares (like just from thoughts or loud noises etc). I want so badly to give this another year and hope it improves but I seem to be an extremely slow healer (if at all). I might start considering medication for the pgad but I'm scared of making it worse.

 

Here are my symptoms now, I'll try to give them an overall rating based on frequency and intensity:

 

- PGAD (7/10) - it's unbearable but I know it can be worse from other's experiences. The bladder and abdomen flares have come back suddenly too

- headzaps (3/10) - happens almost every morning now which hasn't happened since I first withdrew

 - undigested stools - idk how to rate this lol it's just never normal since, it's always yellow with pieces

- urethra spasms and feeling of fullness after peeing (4/10) - getting worse again

- tinitus (2/10) comes and goes now

- earworm (9/10) constant even in my dreams but lately there seems to be breaks from it in the day (either that or I'm too used to it)

- word salad (idk the word for this but my sentences are all muddled up and I can't even write properly without using a ton of mental effort. This hasn't improved at all)

- severe anxiety (low carb has got it down to 1-2/10)

- depression (7/10) I mostly only feel it due to pgad but can feel myself/happy on a good symptom day. But when it does hit it hits hard and I'm extremely suicidal

- groggy/tired/flu symptoms/headaches/ sickness/stomach cramps etc - (5/10) getting worse

- temperature disregulation (2/10)

- hot and cold flashes usually in legs (2/10) getting worse

 

I also recently (January) started getting this weird symptom where my burps feel and sound like hiccups, it doesn't come out normally anymore it sort of spasms? and just hiccups instead? I don't know if it's withdrawal related but I don't know what else it could be.

  

The symptoms I got from last time I withdrew are still here too, all pudendal neuralgia symptoms like:

Stinging in and around perineum and vulva

Crawling and stinging in anus

Pins and needles in tailbone

Anus spasms every time I pass gass lol

Sizzling burning in butt (mostly where the sitting bones are) when sitting

 

I still wonder if my injury there is what is causing most of those (although there was a huge delay which is a lot like how withdrawals act) but I know the pgad is from withdrawing, I totally forgot about this but in 2014 I took paxil for 2 weeks and then stopped and actually got very mild pgad (just 2 little flares) until I started citalopram. That was before injury but maybe my injury could be making the pgad worse than it should be?

This is long but it'll be useful for me to look back on. I just want to know why I'm getting worse?? :(

Share this post


Link to post
PgadAdam

Hi as nobody has responded in a week i thought I'd take the time to do so, i too have PGAD from antidepressant use. I'd just reccomend staying off all drugs expirement with methods to relieve the discomfort coz that's the best we can do incase it doesnt go away on its own. Much love best wishes :)

Share this post


Link to post
Altostrata

@Rbvdk Have you taken any other drugs lately? Such as antibiotics? Had a few drinks? Anything that might have triggered this?

Share this post


Link to post
Rbvdk
6 hours ago, Altostrata said:

@Rbvdk Have you taken any other drugs lately? Such as antibiotics? Had a few drinks? Anything that might have triggered this?

No nothing at all, I've been so careful with everything I do, eat and drink. I don't take any supplements, I don't have any sugar, carbs, alcohol or caffiene. I'm always aware of anything I do physically that could trigger/flare it. But just out of nowhere I just woke up one night last month with it worse than ever and it never got better since. :(

 

14 hours ago, PgadAdam said:

Hi as nobody has responded in a week i thought I'd take the time to do so, i too have PGAD from antidepressant use. I'd just reccomend staying off all drugs expirement with methods to relieve the discomfort coz that's the best we can do incase it doesnt go away on its own. Much love best wishes :)

Thanks for responding! And I'll do my best, I'm scared of trying new things but I'll probably have to at some point. Showers and being absorbed in TV while eating something nice are the only things that help so far (I think it could be because they lower cortisol?) Sorry to hear you have pgad too by the way, I don't know how were all coping with this, I would rather have any other withdrawal than this ! Lots of love and best wishes to you too! :)

Share this post


Link to post
PgadAdam
6 hours ago, Rbvdk said:

No nothing at all, I've been so careful with everything I do, eat and drink. I don't take any supplements, I don't have any sugar, carbs, alcohol or caffiene. I'm always aware of anything I do physically that could trigger/flare it. But just out of nowhere I just woke up one night last month with it worse than ever and it never got better since. :(

 

Thanks for responding! And I'll do my best, I'm scared of trying new things but I'll probably have to at some point. Showers and being absorbed in TV while eating something nice are the only things that help so far (I think it could be because they lower cortisol?) Sorry to hear you have pgad too by the way, I don't know how were all coping with this, I would rather have any other withdrawal than this ! Lots of love and best wishes to you too! :)

To be honest i was thinking of becoming friends with u since i wanna help you worry less. Saw you've been stressed about it for a long time and ppl aren't responding anymore. not really sure if that's acceptable behaviour though will have to know from a moderator if its against the rules or not

Share this post


Link to post
manymoretodays
2 hours ago, PgadAdam said:

To be honest i was thinking of becoming friends with u since i wanna help you worry less. Saw you've been stressed about it for a long time and ppl aren't responding anymore. not really sure if that's acceptable behaviour though will have to know from a moderator if its against the rules or not

 

Hi PgadAdam,

We like when members support each other, and depend on that a lot here, at surviving antidepressants.

I am going to go ahead and send you another notification too now, so that you might start an introduction topic for yourself, something we ask new members to do.

 

Best,

Love, peace, healing, and growth,

manymoretodays(mmt)

Share this post


Link to post
Rbvdk
17 hours ago, PgadAdam said:

To be honest i was thinking of becoming friends with u since i wanna help you worry less. Saw you've been stressed about it for a long time and ppl aren't responding anymore. not really sure if that's acceptable behaviour though will have to know from a moderator if its against the rules or not

 

Thank you so much that's so kind of you, I'd be happy to be friends thank you! :)

Share this post


Link to post
PgadAdam
10 hours ago, Rbvdk said:

 

Thank you so much that's so kind of you, I'd be happy to be friends thank you! :)

 i sent you my contact details under messages tab

Share this post


Link to post
Altostrata

Well, your nervous system became sensitized again. I'm very sorry you're going through this. We don't know why this happens.

 

Have you been light-sensitive? Are you getting more sunlight now?

 

You need to do things that might get it to settle down. Are you able to get a half-hour of gentle exercise each day?

 

Can you give fish oil and magnesium supplements a try, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Try a little bit of one at a time to see how it affects you.

Share this post


Link to post
Rbvdk
2 hours ago, Altostrata said:

Well, your nervous system became sensitized again. I'm very sorry you're going through this. We don't know why this happens.

 

Have you been light-sensitive? Are you getting more sunlight now?

 

You need to do things that might get it to settle down. Are you able to get a half-hour of gentle exercise each day?

 

Can you give fish oil and magnesium supplements a try, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Try a little bit of one at a time to see how it affects you.

Before I got worse I was going out a lot more, around 15 minutes a day. Now I rarely go out, maybe once a week at most (because it flares when I walk). I think I've become slightly light sensetive. I'm going to start trying to walk again despite the flares though.

 

Also the only things I can think of that might have sensitized my nervous system again is having sex 3 days in a row in early March, because that's when I started getting slightly worse and the excessive discharge came back. Then in late March or early April I drank decaf coffee once a day for a week and then suddenly I had the worst flare ever and it became very bad since then. I forgot to mention that because it was decaf but I think some decaf coffee can still have a lot of caffeine especially for someone with sensitization. I stopped drinking it maybe another week later just in case.

 

Thanks so much for helping by the way :) I try to get those vitamins by food (lots of fish and foods with magnesium) would that be enough? I'm worried about taking supplements again incase it just adds more stress to my nervous system.

Share this post


Link to post
Altostrata

You must be quite sensitive.

 

These are unusual symptoms. I would definitely get more walking, at least a half-hour each day, maybe in the early evening when it isn't so bright outside? Be sure to wear dark glasses as well.

 

Not sure what else to suggest.

Share this post


Link to post
Rbvdk
On 6/1/2019 at 10:25 PM, Altostrata said:

You must be quite sensitive.

 

These are unusual symptoms. I would definitely get more walking, at least a half-hour each day, maybe in the early evening when it isn't so bright outside? Be sure to wear dark glasses as well.

 

Not sure what else to suggest.

 

Thanks I've been walking when I can again, trying to get through it despite the anxiety, sunglasses are a good idea thank you! Unusual even for withdrawals? Now I'm more worried lol, I feel like I'm the only one on here who is getting worse and that I'm completely different from everyone else. :(

Share this post


Link to post
Altostrata

No, you're not completely different, but usually we can find a precipitating factor for a return of symptoms. Has there been a change in your hormonal status? Are you pre-menopausal, by any chance?

Share this post


Link to post
Rbvdk
On 6/5/2019 at 8:34 PM, Altostrata said:

No, you're not completely different, but usually we can find a precipitating factor for a return of symptoms. Has there been a change in your hormonal status? Are you pre-menopausal, by any chance?

 

I guess I can only assume it was the caffiene from the coffee, or if it's possible it could have been from having sex too much too soon? The only thing I can think of hormonally was my periods were lighter than usual for those 3 better months (usually I get very heavy periods). And my monthly cycle has been ranging from 23 to 27 days (it used to always be 27) since withdrawing so I'm wondering if my hormones are messed up? And no, I'm 23 by the way. :)

 

Thanks for helping me I hope I'm not bothering you by asking questions but my pgad has always been gradually getting worse since I withdrew (except for those sudden 3 ok-ish months which were good but still not as good as when it started) I'm getting new triggers and more flares and more intense, is there really any hope at all for me that I'm still going to get better? I've been looking all over this website and everyone seems to start off worse and gradually get better, not the other way around?

Share this post


Link to post
Altostrata

Many women have dramatic changes in their iatrogenic symptoms at points in their menstrual cycles, I suppose that yours, which seems to be changing, might have set off the PGAD sensitivity again.

 

Just a guess -- maybe 0.5mg citalopram to see if that helps? Not sure what might work.

 

Have you tried fish oil and magnesium supplements, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

They tend to be calming. Try a little bit of one at a time to see how it affects you. It could be that a tiny adjustment in your nervous system might reduce these symptoms.

 

Share this post


Link to post
Rbvdk
On 6/10/2019 at 2:47 AM, Altostrata said:

Many women have dramatic changes in their iatrogenic symptoms at points in their menstrual cycles, I suppose that yours, which seems to be changing, might have set off the PGAD sensitivity again.

 

Just a guess -- maybe 0.5mg citalopram to see if that helps? Not sure what might work.

 

Have you tried fish oil and magnesium supplements, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

They tend to be calming. Try a little bit of one at a time to see how it affects you. It could be that a tiny adjustment in your nervous system might reduce these symptoms.

 

That makes sense it might have been that. It makes me feel very hopeful if that's the case because I was getting better which means I am capable and maybe still am healing and it was just a disruption that's set it off again. I think the stress of noticing and overthinking all this has played a big part too, as soon as I felt that change/worsening I then started panicking and that panic probably got my nervous system wound up again. I am doing well to manage the anxiety now though with a low carb diet, acupressure, breathing and visualisations so hopefully it won't hinder it too much anymore.

I might consider trying 0.5 citalopram, although last time I went back on citalopram I still ended up developing PGAD 3 months later (and 5 months from withdrawing). So I'm not sure if that means it won't help? It was a lot milder than it is now though (in a way where I would only feel pgad for a couple of hours on one random day every 3 months or so but besides that I was completely normal) so maybe it was helping in some way, I guess there's really no way of knowing.

I'll start taking magnesium again but I'm still worried about fish oil because I heard it worsened someone else, I just try to eat lots of fish instead, I'm sure that's probably as good as a supplement anyway. 

 

I've started following you and I have to say, thank you so much for taking the time to help me when I can see you already have a lot to do and a lot of people to talk to on here already, you're very kind and I'm so grateful for this website. Hope you're doing well!

Share this post


Link to post
Rbvdk

I forgot to mention, I started seeing a homeopath who prescribed Staphysagria drops to me, I need to take 3 drops a day for 2 weeks and then increase to twice a day for another 2 weeks. I'm not sure what the dose is or how strong though. I'm really hoping it'll work or at least help me emotionally if nothing else. I'm still hoping I'll heal in time on my own but I definitely want my options ready when it gets too much to cope. I want to try homeopathy/holistic first before trying western meds/antidepressants etc. But I'll see how I feel anyway. Sometimes I feel too desperate to wait. I really hope I can at least find something that'll make me feel well enough to be able to go in a car again so I can try acupuncture and pelvic therapy (if needed). 

Share this post


Link to post
Altostrata

Hope you do feel better, acupuncture and pelvic therapy sound like good ideas, especially since you've been off the drugs for so long.

 

Not sure what your reluctance is about fish oil. You're not likely to have the same reaction somebody else did.

Share this post


Link to post
Rbvdk
On 6/11/2019 at 9:52 PM, Altostrata said:

Hope you do feel better, acupuncture and pelvic therapy sound like good ideas, especially since you've been off the drugs for so long.

 

Not sure what your reluctance is about fish oil. You're not likely to have the same reaction somebody else did.

 

Thank you :) And I know, I just don't know much about withdrawal pgad so if someone felt worse from a supplement I just kind of assume it's because it's not good for that specific withdrawal symptom (I'm just guessing). I have tried it a few times though (weeks and months in a row) but I'm not sure I really see much difference. I'll try it again once I'm done with my homeopathy medicine though. :)

Share this post


Link to post
Altostrata

Might not have been from the supplement, but some kind of hormonal blip. Have you had a gyn checkup recently?

Share this post


Link to post
Rbvdk
13 hours ago, Altostrata said:

Might not have been from the supplement, but some kind of hormonal blip. Have you had a gyn checkup recently?

That's true. :) And no the last time was August which was when it all started getting a bit worse, it was expensive and she rushed me out in 5 minutes without explaining anything, I didn't even get a report or to ask questions. When I called to try and ask questions saying I didn't get the chance to when I saw her, no one called back (twice) then the third time the receptionist said I'd have to pay to see her again if I have a question so I just gave up. 😕 I don't think my doctor would refer me to the NHS because he's basically saying he doesn't know which specialist could help me (and he thinks pelvic therapists don't exist lol?) Plus the hospital/specialists are too far for me to travel because of how bad I get with walking and being in the car/bus. 😕

Share this post


Link to post
Altostrata

I don't know what to think but maybe some kind of hormonal change, maybe see an endocrinologist? Don't know at all how to get around NHS.

Share this post


Link to post
Rbvdk
5 hours ago, Altostrata said:

I don't know what to think but maybe some kind of hormonal change, maybe see an endocrinologist? Don't know at all how to get around NHS.

 

I'll ask my doctor about that thanks or at least for some hormone tests. :)

Share this post


Link to post

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...