somevelvetmorning: PGAD from withdrawal

[somevelvetmorning]

Hi all, 

 

I've been experiencing intermittent PGAD and pudendal dysaesthesias, exclusively on my right side, since slowly tapering down from 20mg of amitriptyline 7 weeks ago. I am utterly terrified and think my life is entirely over. I'm also baffled because I thought PGAD was associated with abrupt cessation of SSRIs/SNRIs. I know amitriptyline is serotonergic but I couldn't find any accounts in the medical literature or online of anyone developing PGAD after stopping a tricyclic antidepressant, especially a slow withdrawal (although maybe not slow enough?).

Bizarrely, I have been terrified of PGAD for a decade and long refused antidepressants (haven't taken anything other than amitriptyline for migraines and pain since 2012). I never would have consented to be on one except 1.) I was in so much pain, 2.) my GP wouldn't consider other pain treatment, and 3.) I thought amitriptyline was safer.

 

I have experienced some improvement and the arousal hasn't been as extreme as it was when it began. However I am petrified and think I ruined my entire life by taking this drug and then trying to wean off it.

Background

- 30, female

- April 2016-October 2018: took 25mg amitriptyline for migraines. In autumn 2017, it was discovered during hormone tests  that my prolactin was 10x the normal level. Initially it was thought I had a prolactinoma but after an MRI ruled that out an endocrinologist suspected it was the amitriptyline. I withdrew from 25mg amitriptyline over about a month and had no effects.

- October 2019: I start having intermittent bladder pain, which builds to constant 24/7 urge to urinate and bladder burning by November. I am diagnosed with a chronic UTI by specialists in London and given long-term antibiotics.

- late December 2019: the bladder pain is so severe I am suicidal and nearly get sectioned. My GP gives me amitriptyline for the pain. I protest that it elevated my prolactin and ask for gabapentin instead. She refuses and says they can monitor my prolactin. High levels of prolactin are associated with loss of bone density, so it's worrying. I start on 20mg of amitriptyline. 

- February 2020: prolactin levels normal, I'm experiencing some bladder relief from antibiotics (eg bladder gets better when I up the dose, as instructed). The amitriptyline doesn't seem to be doing much good though because my symptoms are all over the place
- April 2020: I experience hair shedding, which had previously indicated high prolactin. I can't get a blood test due to COVID and I'm concerned about loss of bone density, which I'm already at risk of because of a years-long history of anorexia nervosa. Worries about amitriptyline also mean I can't take the dose up to good pain relieving levels. GP suggests gabapentin and I begin the process of slowly tapering off amitriptyline. I spend a month at 15mg, 3 weeks at 10mg, another 3 at 5mg, then a week at 2.5mg. When I later speak to a PGAD specialist in the UK, he suggests that i should have have taken off 5mg every 2-3 weeks and is surprised when I told him I did it slower than that.

- late June 2020: I'm getting what I know understand are withdrawal effects from tapering amitriptyline (which I only had very minorly the last time I came off it): flu-like symptoms, insomnia, anxiety, nausea, one spell of restless legs. Weirdly, my bladder is lots better all through this month and remains better as my PGAD begins.

- 5 July: I have been off amitriptyline entirely for 3 days and I develop clitoral sensitivity. I'm able to orgasm with about 15 seconds of manual stimulation (very unusual for me).

- 7 July: I resume taking amitriptyline, 10mg. PGAD symptoms continue. Notably, my sensitivity is limited to my right side. 

- 10-12 July: I become suicidal due to mounting PGAD symptoms, am in and out of A&E. I am referred to a mental health crisis team, which suggests I take the amitriptyline up to 30mg.

- 18-25 July: arousal subsides. I still get, at various points, dysaesthesias along my pudendal nerve, always right side, including itching in labia, aching in labia, panging in labia, burning in perineum and anus. I'm also getting weird tingling pain up through my right buttocks and lower back and shooting pain down my right leg.

- 26 July: arousal resumes. I attribute this to being on my period and it goes within a day or two of my period ending. I take amitriptyline up to 40mg and start taking 300mg of gabapentin, with instructions to titrate up.
- Aug 1-Aug 16: arousal largely gone and I'm getting mostly the dysaesthesia symptoms.

- 17 August - today: some intermittent arousal, less than before but still frightening. Had intense right labia pain in one specific spot on Weds-Thursday. My period started on Friday and from then until Monday afternoon I had intense vaginal aching. 

Symptoms (at various points): arousal, clitoral sensitivity (more on right side), labia itching (right side), labia aching (right side), sharp pains in labia (right), burning or icy feeling in perineum and anus (right, again). Right buttocks, lower back and leg pain. Sensation that there is something in my ******. Sensation that there is something in my anus. Pressure/aching/fullness in ******. Feeling like my perineum is going to explode. Never had a spontaneous orgasm with this.

Comorbidities: hyperawareness/somatic OCD/health anxiety, depression, borderline personality disorder, migraines, bladder pain/urgency, anorexia

Medications: 40mg amitriptyline, 500mg of gabapentin.

I have spoken to Dr Goldstein, a PGAD specialist in San Diego, and will see him in two weeks. (I live in the UK but I'm also American and my sister lives in California.) He believes that because my symptoms are unilateral and extend into my back and legs that they're being caused by a defect in my spine. I had an MRI which revealed a possible tear at L5-S1 and notably had a bad fall give years ago where I stuck my lower back and my legs went tingly and numb for 20 minutes. Within a few months I developed sciatica on my right leg and have had stiffness/low level pain in that leg since. It's also possible my pudendal nerve is trapped or damaged further down. I'll have all these tests to figure out where this is coming from.

Because my symptoms are just on one side it seems they're caused by a structural problem with the nerve, causing it to signal all sorts of weird things. Goldstein said my brain was compensating for these signals but then withdrawing from the amitriptyline created a neurochemical imbalance that means I lost the ability to block them. He suggested it wasn't the amitriptyline withdrawal that caused this but rather it revealed an existing problem--which is hopefully fixable.

I have experienced relief, including days-long stretches with very minor symptoms. I'm currently just getting low level arousal and some right labia dysaesthesia. But I remain depressed and anxious, and when the symptoms creep back I fly into a panic and all the suicidal thoughts rush back. I'm always terrified they're not going to ebb again. I also relentlessly blame myself for everything that happened and the perfect storm that led to me withdrawing from an antidepressant. I also went through hell with my bladder and just as that was getting better, this began. 

I've read most of the PGAD posts on here, which are both worrying and encouraging. Does anyone have any further insight into this? Does it get better?
 

Edited August 26, 2020 by Gridley

[Gridley]

Welcome to SA, somevelvetmorning.

 

To start, you haven't ruined your life by taking the amitriptyline and tapering it.  It is our experience on this site that we do heal from withdrawal from these drugs and that the effects of them are not permanent.  There's no way to predict how long it will take for you to heal from the drug and from withdrawal.

I can say that it can be a frustratingly long time but that it will happen.  

 

Please summarize your medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.  Please be sure to put the rate of your taper and the dose at which you stopped taking the drug seven weeks ago.  Please tell us the approximate date you stopped rather than "7 weeks ago."  Your signature will appear at the bottom of all your posts and is a big help to the moderators. Please use this link and press "save" when you're finished.

 

Account Settings – Create or Edit a signature.

 

Regarding tricyclics, before i discovered this site, I tapered another tricyclic, Imipramine, too fast and as I got lower in dose I experienced significant anxiety. Then I discovered SA, updosed to a slightly higher dose and, after a few months, stabilized.  A too fast taper of any of these psychiatric drugs can cause withdrawal symptoms.  We don't put a lot of stock here in psychiatric diagnoses like PGAD, but anxiety is one of the most common symptoms of withdrawal.

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

Reinstatement of a very small dose of the original drug is the only known way to help alleviate withdrawal syndrome.  The only other alternative is to try and wait out the symptoms and manage as best you can until your central nervous system returns to homeostasis.  Unfortunately no one can give you an exact timeline as to when you will start feeling better and while some do recover relatively easily, for others it can take many months or longer.  

 

Reinstatement isn't a guarantee of diminished symptoms for everyone but it's the best tactic available.  You're still in the time period where reinstatement predictably works, up to 3 months after last dose.  It is best to reinstate as soon as possible after withdrawal symptoms occur. We usually suggest a much smaller reinstatement dose than your last dose.  If you decide to reinstate, please let us suggest a dose before doing so. These drugs are strong, . your system has become sensitized and If you take too much it may be too much for your brain and can cause you become more unstable.   Then, once you've stabilized on the reinstated dosage, which can take several months,  you can begin a 10% per month taper down to zero.  Why taper by 10% of my dosage?

 

Please read:

 

About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction topic, where you can ask questions, complete your drug signature and connect with other members.  We're glad you found your way here.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[somevelvetmorning]

4 hours ago, Gridley said:

We don't put a lot of stock here in psychiatric diagnoses like PGAD, but anxiety is one of the most common symptoms of withdrawal.

PGAD--persistent genital arousal disorder--isn't a psychiatric diagnosis. Are you confusing it with generalised anxiety disorder (GAD)?

 

4 hours ago, Gridley said:

Reinstatement of a very small dose of the original drug is the only known way to help alleviate withdrawal syndrome.  The only other alternative is to try and wait out the symptoms and manage as best you can until your central nervous system returns to homeostasis.  Unfortunately no one can give you an exact timeline as to when you will start feeling better and while some do recover relatively easily, for others it can take many months or longer.  

I reinstated within two days of developing arousal symptoms, first at 10mg and then at the advice of a psychiatrist and PGAD specialist tapered up to 40mg. Was this too high a dose to resume?

 

Thank you for the welcome.

[Gridley]

6 minutes ago, somevelvetmorning said:

PGAD--persistent genital arousal disorder--isn't a psychiatric diagnosis. Are you confusing it with generalised anxiety disorder (GAD)?

Yes, sorry, my error.

 

8 minutes ago, somevelvetmorning said:

Was this too high a dose to resume?

It's higher than we would recommend.  We recommend reinstating with a dose much lower than your last dose, which in your case was 2.5mg.  The reason for reinstating low is that your system is sensitized from your very fast taper, and too much can overwhelm your system.  

 

How are you feeling on 40mg?

[somevelvetmorning]

9 minutes ago, Gridley said:

Yes, sorry, my error.

 

It's higher than we would recommend.  We recommend reinstating with a dose much lower than your last dose, which in your case was 2.5mg.  The reason for reinstating low is that your system is sensitized from your very fast taper, and too much can overwhelm your system.  

 

How are you feeling on 40mg?

I was initially on 30mg and my symptoms significantly subsided within a week of within a week of reaching that dose. For nine days, I got sporadic right-sided pain and dysaesthesia in the distribution of the pudendal nerve (genitals, perineum, anus) but no arousal. Some of the arousal returned after that 9 days, coinciding with my period. At that point, in desperation and because amitriptyline is used for nerve pain, I upped the dose to 40mg. It subsided again after 6 days, after my period ended. I then had 17 days (1-16 August) with very little arousal, just occasional right-sided genital pain, often from sitting too long. The second-week was particularly good and I felt 90-95% better.

 Since 17 August I've had sensitivity just below the level of arousal and vaginal aching. The arousal has never been as bad as it was during the first 12 days I had it, but I'm panicking a little because it's been 9 days with these symptoms--which are probably 40% of what I got before but still irksome. This flare has coincided with my period, again, so I'm hoping it will settle down within a couple days of that ending, as last time. But I'm absolutely riven with grief about what I did to myself.

 

I'm getting lots of dysaesthesia along the distribution of my pudendal nerve, just on one side. It makes me wonder if either withdrawal has caused small fibre neuropathy in that nerve or, as the specialist I'm seeing suggested, withdrawal has stopped my brain's ability from blocking signals from an already damaged or entrapped nerve. Notably, I've had bladder pain (also served by the same nerve) since October 2019. It's the reason I was on amitriptyline. I came off because it wasn't helping and my GP thought gabapentin might work better.

[DataGuy]

Hi @somevelvetmorning,

 

Can you please put all medications in your signature, especially the antibiotic and dosage? Antibiotics can often have an effect on withdrawal symptoms because they can antagonize the receptors for the neurotransmitter GABA. Supplements may be relevant too, these can often have psychotropic effects. 

 

Amitriptyline has pretty substantial effects on serotonin, so I would not get hung up on not being able to find case reports of causing PGAD. Reporting of adverse events in general is typically awful, with only around 1 in 1000 physicians reporting them. 

 

If indeed you are suffering from hyperprolactinemia as a result of the amitriptyline, it is important to get a blood test. You may want to see an endocrinologist. Amitriptyline seems quite capable of causing hyperprolactinemia (see: this article). Withdrawal may result in hypoprolactinemia, which is the opposite of very high levels of prolactin. I believe this can be associated with hyperarousal and likely PGAD, but I need to still do a bit more reading on this. Dr. David Healy in the UK has done quite a bit of work on both PGAD and PSSD (see this video).

 

Please do not panic or think you have ruined your life. I can tell from your posts that you are very conscientious and meticulous, and if you continue to read and take control of your medical treatment, you will be able to figure this situation out. I hope @Gridley, I and other moderators here can play a small part in that. 

Edited August 27, 2020 by DataGuy

[somevelvetmorning]

1 hour ago, DataGuy said:

Amitriptyline has pretty substantial effects on serotonin, so I would not get hung up on not being able to find case reports of causing PGAD. Reporting of adverse events in general is typically awful, with only around 1 in 1000 physicians reporting them. 

All the medical literature and the few scant warnings are about SSRIs/SNRIs and PGAD. A gyno told me this was an "unusual" drug to have triggered it. Had I known, I never would have consented to being on amitriptyline in the first place and I definitely would never have tried to come off it. People aren't made aware of the risks of anti-depressants in general but this particular risk isn't documented AT ALL. I'm fastidious and anxious about medication and I had read about PGAD and antidepressants and I was still blindsided by this. Ditto it being cold turkeys that cause this. I tapered quite slowly, slower than the PGAD specialist told me I should have done. I'm just reeling that after all my precautions and fear, this still happened to me.

 

1 hour ago, DataGuy said:

Can you please put all medications in your signature, especially the antibiotic and dosage? Antibiotics can often have an effect on withdrawal symptoms because they can antagonize the receptors for the neurotransmitter GABA. Supplements may be relevant too, these can often have psychotropic effects.

Yes, I'll add that. I'm still pursuing treatment for my bladder and it has gotten substantially better on antibiotics (and deteriorated when I withdrew one), so I wouldn't want to come off them. I'd hate to think I have to choose between having bladder pain and arousal-y symptoms. As I've said, the arousal is better and is more one-sided sensitivity and aching now but it's still terrifying to me.

 

1 hour ago, DataGuy said:

If indeed you are suffering from hyperprolactinemia as a result of the amitriptyline, it is important to get a blood test. You may want to see an endocrinologist. Amitriptyline seems quite capable of causing hyperprolactinemia (see: this article). Withdrawal may result in hypoprolactinemia, which is the opposite of very high levels of prolactin. I believe this can be associated with hyperarousal and likely PGAD, but I need to still do a bit more reading on this. Dr. David Healy in the UK has done quite a bit of work on both PGAD and PSSD (see this video).

Yes, they worked out in 2018 that amitriptyline was the cause of my hyperprolactinaemia. Levels dropped back down to normal within a couple weeks of me being off amitriptyline. I'm arranging a blood test.

[somevelvetmorning]

Oh I should add that I take triptans (specifically almotriptan) to abort migraines, as needed. I'm aware triptans are serotonigenic. I got a little bit of serotonin syndrome once when first starting amitriptyline in 2016.

 

I had a lot of menstrual migraines the week before the PGAD started and actually took a triptan the morning before it started. Had to take a whole string of them again in early August when it was so hot here--this was during my 17-day window. Unfortunately, I can't really stop taking triptans either. Without one, a migraine just will never stop and I'll end up in status migrainosus (intractable 72-hour migraines, which usually require emergency medical treatment.

[DataGuy]

Ok @somevelvetmorning, it seems like the amitriptyline is the likely culprit for causing the PGAD, since it began shortly after you withdrew from the drug and then semi-resolved after taking it again. If the drug is causing hyperprolactinemia, I don't think it's a good idea to continue taking it. You are still young and want to maintain normal hormonal function. If you want further confirmation, you can answer a series of questions from this side effect checker on RXISK.com here: https://rxisk.org/experiencing-a-drug-side-effect/

The report should give you some sort of likelihood score that the drug was the cause of your PGAD. I believe the usual treatment for that is to withdraw from the drug, which we can do very slowly so as not to exacerbate the PGAD symptoms. I am a bit worried about the chronic antibiotic use, though, so maybe we can wait for things to stabilize on that front? 

 

This article mentions that withdrawal of the offending drug is the usual treatment: https://www.thieme-connect.de/products/ejournals/html/10.1055/s-0039-1679169

 

If you want to plug your drugs into this drug interaction checker, that may be useful as well: https://www.drugs.com/drug_interactions.html