Seeking Advice

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emotionalhurry7129
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Seeking Advice

Unread post by emotionalhurry7129 »

Hi everyone :ugeek:

I'm mostly here because I'm seeking clarity on a couple things:

-I'm thinking of trialling Cyproheptadine but I'm nervous. I have not once seen any recovery story that has mentioned past trials of cyproheptadine, let alone that it contributed to a recovery. This makes me wonder if cyproheptadine use can make it harder to recover in the long run. Any evidence, even anecdotal, would be appreciated.

-I have been taking so many supplements and have no idea what is affecting me or how. I don't really have a protocol to determine how long I should trial a supplement before deciding if it works or not and could really use some advice in that department. I mention this below but a few weeks ago I had been trialling low-dose SSRI reinstatement for about a week when I foolishly started taking St John's Wort for a couple days, not knowing about their interaction. This led to a big horrible crash and made everything worse. I want to reassess my supplement methodology, but I really just feel like I have no idea what I'm doing, and have no knowledge of any potential interactions or contraindications. Nothing is noticeably helping or hurting me, so I wonder if I should just stop everything, but I know some take a while to build up in your system, and wouldn't want to cease them before I can get a sense of whether they work or not. I'm just on so much stuff I can't even tell what's what.

Here is my stack:
  • For about two months I have been having a daily morning tea of Rhodiola, Tulsi, and Oat Straw. I'll have an afternoon smoothie with Maca, Ginkgo Biloba, and NAC. Before bed I take 600mg of Hops. I'll have an occasional nighttime tea of Chamomile, Mugwort, and Damiana. There were a few times I put Ashwagandha in my nighttime tea and it gave me sex dreams which is something that has never happened otherwise. But I read online that it does funky things to 5HT1A receptors so I stopped.
  • For one month I have been taking daily supplements of Vitamin B12, Vitamin C, Vitamin D, Magnesium, and Zinc. I try to take Saffron every day but I forget sometimes.
  • Supplements I have taken too sporadically/not enough to determine their effect: Omega 3/6/9, Schisandra, Taurine, L-Arginine + L-Citrulline, Alcar (Acetyl L-Carnitine), Cardamom, Tongkat Ali.

I recently sent this to a doctor, and think it serves as a good introduction to my condition:

I am 27, I have been on SSRIs since I was about 15 and never really had any notable side effects. I was on Zoloft for about 8 years (with some yearlong breaks here and there) until August 2022, when I decided to try Lexapro. I had no SD problems on Lexapro (or ever in my life), but it made me very tired and unmotivated. In March 2023, I wanted to try something different, and my psychiatrist put me on Effexor.

The switch from Lexapro to Effexor was pretty nasty and not well executed. I was out of town at the time and didn't have access to a pharmacy, so although I somewhat titrated off Lexapro (maybe a week of half a dose, a week of half-dose every other day) there was a period of about four or five days when I had run out of Lexapro and not yet picked up my Effexor that very much felt like a brutal cold turkey withdrawal. I had both prescriptions mailed to me and I started taking mini-doses of Lexapro alongside my Effexor for a few days to resolve the withdrawal. This was probably ill-advised in hindsight, but my psychiatrist was impossible to reach during this time, and I was desperate.

The brain zaps and dissociation of the withdrawal subsided for about a week, but when the Effexor started to kick in began the most morbid and acute bout of depression I have ever experienced, along with a complete shutdown of my sexual function (from a 10 to a 1) that never resolved. I was on Effexor for about 3 weeks until I was able to get a new psychiatrist who switched me to Wellbutrin. I was on it from the end of March until the end of May and my condition improved slightly (from a 1 to a 3), but then very clearly plateaued and got a bit worse. Although Wellbutrin helped me with mood, energy, and motivation, I wanted to see if going off all antidepressants would lead to any improvement with my SD. It hasn't.
  • My SD symptoms: sexual anhedonia, no libido, complete severance of the emotional and mental connection between my brain and genitals. I can get an erection but only through considerable physical stimulation. My genitals are cold and radiate discomfort. Sildenafil makes it a bit easier to get erections but they are still mechanical-feeling and not psychogenic. I am not in a relationship but I have had sex a couple times since this started; it was so unenjoyable that I decided not to seek it out anymore.
  • Physical symptoms: pelvic floor dysfunction/HFS and related issues, chronic pain, constant discomfort. I can't stand or sit for too long which makes most things quite difficult.
  • Mental symptoms: brain fog/cognitive issues, inability to concentrate, bad memory
  • Emotional symptoms: blunted affect, general anhedonia (nothing is enjoyable), body dysmorphia, social anxiety. All of these have caused me to retreat from my social life.
  • Lifestyle changes: I was a daily cannabis smoker for years, but now it just flares up my symptoms and agitates me so I stopped in June. I never drank much but now I don't at all; I also quit caffeine and stopped my prescribed stimulants (adderall/ritalin) because they made my muscles tense and pain worse. I try to run and do PT exercises and pelvic floor stretches every day but this can be painful and hasn't yet led to any noticeable improvement.
Since the issues began I have met with my PCP, a Pelvic Floor Therapist, a new Psychiatrist, 2 Urologists, and an Integrated Medicine Specialist. I got my blood work done in June and my hormones came back at normal levels. Hoping improving my gut health would fix my serotonin metabolism [1], I tested positive for SIBO and met with a GI doctor, and I'm now on antibiotics. Basically all of these doctors are unfamiliar with PSSD and have deferred to other doctors. Not having a comprehensive treatment plan in place has left me frustrated and hopeless.

Out of desperation I have been doing my own research online, which no doubt has its pitfalls. I started taking way too many supplements. In the beginning of August I agreed with my psychiatrist to trial a low-dose reinstatement of zoloft, 12.5mg. I was on it for a week when I started taking St. John's Wort for 2 days, which I was unaware is not supposed to be taken with SSRIs. This made me incredibly agitated and woozy so I stopped both the SJW and zoloft. It made my symptoms flare up horribly and crashed me (from a 3 down to a 2) and I have not recovered since. Ideally, for my mental health, I would like to be on low doses of both zoloft (to treat anxiety) and wellbutrin (to treat depression) but resolving PSSD is more important to me right now and this recent crash makes me unsure of how to proceed.

After the antibiotics run their course, I have discussed with my psychiatrist trialling Periactin/Cyproheptadine. The logic behind this is that supposedly PSSD is caused by worn out 5HT1A receptors that have been depleted by SSRIs, and downregulating them with a 5HT1A antagonist could bring me back to a normal level. [2] I am a little nervous because of the expected fatigue and possible brain fog, and I doubt it will resolve my condition, but it would be nice to at least have a brief window of reprieve. I am also considering Buspar/Buspirone, although I know it is a 5HT1A agonist, which concerns me [3]. I am considering HRT; there is a lot of anecdotal evidence of people with PSSD with seemingly normal hormone levels recovering with trials of T and E [4]. I've also heard of treatments like muscle vibration and phototherapy [5] but don't know how to go about seeking them. The lack of research and clinical understanding of PSSD is quite distressing but I am trying not to let that stop me from seeking treatment.

I really don't know what else I should do at this point. The prospect of living with this condition for years if not forever is too bleak for me to even process.

[1] A study on how the "Gut-Brain Axis" affects Serotonin metabolism: https://pubmed.ncbi.nlm.nih.gov/31345143/
This study is about Gut Microbiota and Post-Finasteride syndrome, which I don't have but is closely related to PSSD: https://link.springer.com/article/10.10 ... 20-01424-0
[2] Here is a study about Cyproheptadine/Periactin being used to treat SSRI-related SD. Notably this is not for PSSD, just for SD experienced while currently on SSRIs, which I suppose is an important distinction. https://pubmed.ncbi.nlm.nih.gov/8665544/
Here is some research on treating SSRI-SD (not PSSD) with 5HT1A antagonists (like cyproheptadine): https://academic.oup.com/ijnp/article/1 ... ogin=false
[3] Buspirone was trialled for PSSD in this cohort study: https://article.imrpress.com/journal/JO ... 972cab.pdf
[4] This literature review goes into the hormonal route for treatment, it is unpublished but well cited: https://osf.io/jxnbu/
[5] This cohort study is pretty comprehensive and mentions muscle vibration and phototherapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9503765/
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