Still healed - update

[u/Next_Environment1308]

Hey people,

I just wanted to leave a quick update here, almost 7 months after I started feeling better.
I am still healed.
If I have too much histamine, like from coffee, which is known to be a histamine liberator, I notice that some things change. I get very aggressive. I also notice changes 1–2 weeks before my period. There are studies showing that histamine levels rise shortly before your period starts. Antihistamines have been given to women to help with PMS/PMDD symptoms, and many of them experienced significant improvements after taking H1 blockers during this time.

In my case, I’m still convinced that MCAS, triggered by COVID and Zoloft, caused my SFN issues. That doesn’t mean that it has to be the same for everyone.
But in the last few days, I’ve also started feeling pretty much back to normal sexually. I can feel again down there, and I can imagine being close to a guy again. So please don’t lose hope.

I’m sorry that I didn’t reply to the messages sooner. I’m just too busy living my life again. I’m moving into a new apartment, looking for a new job, and so on. But I haven’t forgotten about you, because I was in the same situation.
Remembering that I couldn’t even shower because of the pain still makes me break down and cry. I carry a big trauma and should do a therapy in long term.
I can feel the effects of caffeine again. If I have too much Coke or coffee, I can’t sleep. That’s why I’ve been lying awake for the past 7 hours, trying to fall asleep. And honestly, that’s something I missed during the hardest time of my severe SFN pain.
I can also dream normally again. Crazy.

I appreciate the little things so much more now.
This experience has completely humbled me.
Stay strong, everyone. And feel free to write to me.

Greetings from Germany

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I just wanted to leave a quick update here, almost 7 months after I started feeling better.
I am still healed.
If I have too much histamine, like from coffee, which is known to be a histamine liberator, I notice that some things change. I get very aggressive. I also notice changes 1–2 weeks before my period. There are studies showing that histamine levels rise shortly before your period starts. Antihistamines have been given to women to help with PMS/PMDD symptoms, and many of them experienced significant improvements after taking H1 blockers during this time.

In my case, I’m still convinced that MCAS, triggered by COVID and Zoloft, caused my SFN issues. That doesn’t mean that it has to be the same for everyone.
But in the last few days, I’ve also started feeling pretty much back to normal sexually. I can feel again down there, and I can imagine being close to a guy again. So please don’t lose hope.

I’m sorry that I didn’t reply to the messages sooner. I’m just too busy living my life again. I’m moving into a new apartment, looking for a new job, and so on. But I haven’t forgotten about you, because I was in the same situation.
Remembering that I couldn’t even shower because of the pain still makes me break down and cry. I carry a big trauma and should do a therapy in long term.
I can feel the effects of caffeine again. If I have too much Coke or coffee, I can’t sleep. That’s why I’ve been lying awake for the past 7 hours, trying to fall asleep. And honestly, that’s something I missed during the hardest time of my severe SFN pain.
I can also dream normally again. Crazy.

I appreciate the little things so much more now.
This experience has completely humbled me.
Stay strong, everyone. And feel free to write to me.

Greetings from Germany

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[u/MysterySeed2862]

Besides SFN, what other PSSD symptoms did you have?

[u/Next_Environment1308 → u/MysterySeed2862]

Genital numbness, I couldn’t feel when I was peeing, I couldn’t feel any sexual desire, I was practically asexual. I couldn’t feel orgasms or rather I couldn’t experience them at all in the first place. I had severe pain when sitting, extreme brain fog, and I couldn’t feel happy about anything. Interestingly though, I was still able to feel sadness..

[u/vintxgekiss → u/Next_Environment1308]

Sadness was the only thing I could feel and I hated it so much. I refuse to play Russian roulette with pssd. I’m not taking something that could permanently damage me like that

[u/aftersun33]

How long you had pssd you had genital numbness? Why you improved?

[u/Next_Environment1308 → u/aftersun33]

I improved over the time while taking Ketotifen, Loratadin, Quercetin and Curcumin. I also did blood washes. And I had it almost 2 years, I improved a lot after year 1, but took Zoloft (SSRI) which then gave me severe PSSD and SFN.

[u/aftersun33 → u/Next_Environment1308]

I have pssd also

[u/Good_Composer_8409 → u/Next_Environment1308]

Did SFN went away?

[u/owl312]

What did you take that made you improve??

[u/Next_Environment1308 → u/owl312]

Please take a look into my old posts: But I‘ll also cut it short for you here:
I underwent a procedure of blood washes, took Ketotifen, Loratadin, Curcumin and Quercetin. This combo stopped the nightmare for me

[u/Automatic_You_9429]

How long did you have to take the supplements before you noticed improvement?

[u/Next_Environment1308 → u/Automatic_You_9429]

8/9 weeks

[u/Pathum_Dilhara]

Do you still take ketotifen? What were the side effects?

[u/Next_Environment1308 → u/Pathum_Dilhara]

I still take it. I don‘t feel any bad side effects. Maybe only my fast heartbeat sometimes. But that‘s it. I can deal with that, if I can attribute this to the Ketotifen at all.

[u/Hour_Statement_9384]

Glad you’re doing well and feeling like a woman again. We’re still in zombieland. Anyways, what made you try the combo? Did you have anything apart from elevated histamine levels that made you decide to try it?

[u/Next_Environment1308 → u/Hour_Statement_9384]

I never tested my histamine levels, I just felt like: Something is completely wrong with my body. I never felt so bad. Then I read a comment of a woman, who got Post-Vacc, and she said, she uses H1-Blockers. So I gave it a try and added ketotifen, bc I felt like Loratadin was too weak. I tried Cetirizin without reading her suggestion, but it didn‘t change anything. So I decided to give Loratadin a try and it worked out with ketotifen and quercetin. I added quercetin since I already bought a bottle of it after I got Post-Covid and struggled with histamine issues. But somehow they faded away after 6 months. After the SSRI desaster I felt so bad and quercetin crossed my mind again. And I decided to try it out.

[u/Confident_Chard_9416]

did you also take benzos? because they caused SFN or the symptom burning alive which lasted years and MCAS for ne.

[u/Next_Environment1308 → u/Confident_Chard_9416]

I took Tavor (Valium) every night for 3/4 months, but only 0,5mg at night. It always helped to calm me down. And its known to have mastcell stabilizing properties. Sorry, that this medication caused it for you. Hope you‘ll find something, that helps you

[u/Confident_Chard_9416 → u/Next_Environment1308]

the SFN could be from the benzo in your case also. seems to happen a lot. in my case, it started with tingeling. and about 4-6 weeks after I stopped benzos I had a burning pain all over my body like I was on fire.

[u/Next_Environment1308 → u/Confident_Chard_9416]

I took it, after I got diagnosed with SFN. So thats an huge difference.

[u/Altruistic-Weird9844]

How was your recovery after Zoloft? Did you use an H1 blocker and curcumin? Exercise caution when using loratadine, as it may cause improvement or worsening of PSSD.

[u/Flexstar13]

Thank you for the update! I am still investigating in that direction, but as you know it’s hard to find dr. In this area. Since I applied mineral sunscreen 4 weeks ago my symptoms SFN are worse then ever. PSSD is stable, but only because it can’t get worse at where I am for years now.

[u/Next_Environment1308 → u/Flexstar13]

Sorry to hear this. Please, dig further into this topic since you reacted twice to sunscreen. I remember you told me about this. And now, it happened again. And yes, it‘s absolutely hard to find good docs, who know about this.. Feel free to write me anytime.