The 'Love Hormone' (Oxytocin) May Quiet Tinnitus

@ploughna, sorry to hear about the setback - hopefully it will not be long-lasting and the next attempt on Oxytocin will prove fruitful.

To be clear: you are now trying Oxytocin individually, and not as part of the trial, right? And the trial is ongoing and blinded?

 

@Uklawyer, that's correct, I'm having my prescription filled this week so will start on it again shortly. And, yes, I believe the trial is still ongoing. I say this because my detailed results are not yet available to the researchers.

 

@ploughna, thanks. Just a quick one: if the study is ongoing, how do you know that you were given the Oxytocin? (Perhaps I am missing something, but I thought that, in blind studies, the participant did not know what they were getting — unless they reveal results to individuals as they finish?)

 

For the first half of the study, everyone is given Oxytocin. For the second half, it's 50% placebo and 50% Oxytocin.

 

@kuromi, tagging you because I think you may find this very interesting.

Ok, so I spoke to Dirk De Ridder this morning. I got a lot of very interesting information, he answered all my questions and I feel enlightened.

He recommended some stuff for me. One of the things he mentioned was Oxytocin. He referred to a study in Brazil. He would not normally recommend it, because it doesn't really work, except for in a particular circumstance. That circumstance is "people with autism", which I happen to have. It works on people with autism. I have an appointment with my doctor tomorrow, I'm testing for a genetic condition called hemochromatosis. I will ask my doctor for a prescription for Oxytocyin and then I will use it for 1 month. He said it may give me some serious relief. I feel hopeful about this.

 

Count me in @Lurius I'm also a proud member of the Auti club. Thanks for taking some time to talk to Dr. De Ridder about this issue.

Anyway, did Dr. De Ridder provide a reason why people with autism are more susceptible to Oxytocin? It seems super interesting.

I hope your doctor knows how to fix hemochromatosis. From what I've read on Wikipedia, it sounds rather serious.

 

If I had known you had autism, I would have tagged you as well. There aren't that many of us, we need to look out for each other. I seriously recommend that you try Oxytocin, it may work for you. Nothing is guaranteed in life, but I'm seriously going to try this. It's a hormone, not a drug, so the risk is very low. I think the worst thing that can happen is that you might feel clogged in the nose.

 

It's totally alright @Lurius, it's not like as if I'm walking around with ''autism'' tattooed on my forehead (though it has crossed my mind to put something like that on my arm)

After reading your story, I've decided to go down this route as well. Tomorrow morning, I'll give my GP a call and ask her about this.

But again, thanks for sorting this out. Hopefully, we'll figure it out asap if it works!

 

@ploughna, are you still doing the Oxytocin Rx? Would love to hear an update from you.

My tinnitus is like yours, very unpredictable. Mine is caused by dysfunctional Glutamate neurotransmitter re-uptake system so the volume goes up unbearably sometimes depending on what I’ve eaten... something that contains Glutamate that I wasn’t aware of. So I’m not sure this is going to help me. But my point was, that I know how horribly frustrating it is to have a couple of “good” days and wake up with a shrieking head.

 

I'll be doing 2 months of Oxytocin therapy soon. Will post results once I'm done with my experiences.

 

Just curious. How do you know you have a dysfunctional Glutamate neurotransmitter re-uptake system?

 

@Lurius, you said you were prescribed Oxytocin. Is it a nose spray? How were you able to convince your doctor to prescribe it?

 

How is it going so far @paul mclean ?

 

@ploughna, thank you for your posts.

Do I understand correctly that this doctor will prescribe Oxytocin treatment outside the trial?

 

@ploughna keeps signing in but isn’t responding.

 

Gonna have to get @Matchbox on the case.

 

Yes, I saw your message - sorry for the delay in responding.

The doctor running the study agreed to continue seeing me and prescribed it on the basis that I thought it might be benefiting me. Whether this is offered only to prior study participants or anyone, I don't know. However, I'd imagine post study.

I've been taking it for about a month now. As mentioned previously, my tinnitus is quite variable, and that continues to be the case, but I've had a couple of days lower than anything previously (never more than 2 days in a row though), and on the bad days, levels don't seem to go quite as high as previously (and there is meant to be a mood enhancing element to Oxytocin also, so maybe that's a factor?).

So, I do think it's doing something, not a huge improvement (previous range of 4-7/10, now maybe 3-6/10) but enough that I'm going to continue with the treatment for a while - it seems a lower risk option than many of the other medications often prescribed.

 

I started taking Oxytocin today, we'll see how it goes.

 

Good luck @Lurius. Glad you can try it out for yourself. How did you manage to get a prescription, if you don't mind me asking?

I've been trying to get a hold on it, but both my ENT and GP are adamant in providing for this treatment due to lack of clinical results for tinnitus. I also don't think I could get it by playing the autism card, as mine is considered pretty mild (only issues with hypersensitivity to senses).

 

I'm having an insane spike right now, which is kinda difficult for me since last week was the best week I've had in over 2 months. I'm not blaming the Oxytocin... yet. It could just be a coincidence. I took a nap and that has a nasty tendency to cause spikes.

My GP was being impossible as well, he said flat out that he refused to give me the Oxytocin for any reason. After much email correspondence and some calls to the Belgian office, I managed to get a prescription from Dirk De Ridder himself, it was a lot of back and forth because of some mistakes made by his secretary (I think). I actually thought, no way in hell they are going to accept this in the pharmacy, but they did actually.

Yeah, so to get Oxytocin you just have to speak to Dirk De Ridder over Zoom... twice xD

 

What did you get out of contacting the Ketamine clinic?

 

Just a guy with a very strong American accent on his Norwegian, he explained some things to me about how Ketamine works and I asked about negative side effects etc.

He said there are very few clinical studies on Ketamine for treating tinnitus but he was willing to try, however he warned me that most of the people who had their tinnitus treated with Ketamine had Ketamine shots directly into their ears, in his clinic he said they only give Ketamine intravenously.

I said I would get in touch with him through email, which I admit I still have not done. I probably will at some point but there are other things on my list I want to try first so I have to give it some time.

 

Wow, sorry to hear that. Let's hope Oxytocin is not the bad guy behind your spike and that it subsides as soon as possible, Lurius.

Yeah, it's super frustrating. But on the other hand, it's a protocol to which they are bound to as medical practitioners. Otherwise, meds could easily fall in the wrong hands (black market), shortages could be a common thing, etc.

Hmmm... ok. I wouldn't know why 2 appointments are needed for an Oxytocin prescription. One would be enough, I'd think? Maybe you can fill me in on that? Anyway, I've already made an appointment with Dr. De Ridder on the 30th of this month. Looking forward to it!

 

Haha, ok, yes so autism confirmed. That was a joke, Christiaan. Hence the little xD I made. I have some problems with irony written by complete strangers as well, though, so you're not the only one.

Speaking to him once should be sufficient.

My tinnitus is insanely much better today so the Oxytocin is not to blame. I already took it twice today and there has been no spike.

 

Oops! Well, you've finally discovered my kryptonite Honestly, I completely overlooked that smiley thingy, lol. Even though I wear glasses, I really need to get my eyes checked again

Good to hear about your current tinnitus btw!

Edit: I've found something that might be helpful for you. It's the dosage specification of previous successful cases studies at the NYU (mentioned in a patent). Maybe you can try different formulations and see if that does the job.

 

This looks very promising. Thanks for sharing. I have a question, is Oxytocin spray something that pharmacies have to hand? Or do they have to order it in / mix it up? I am in Ireland, but presume the protocol is the same in most European countries.

 

Good question! I'll get back to you on that. A good friend of mine is a pharmacist and I'll forward your question to him and hopefully we'll know soon enough how that protocol generally works.

 

Thanks for that. Maybe some of the others here that have got their hands on it might be able to shed some light. I can't even imagine how hard it would be to get an Irish GP to prescribe a spray that they know nothing about but worth a shot!

 

Ah, well in that case: chances are you won't get it via the regular GP route unless you're pregnant So good luck with that!

The thing is that practically most doctors normally prescribe medication if it has been absolutely clinically proven to work. So far, it has only been extensively tested on pregnant women + women with postpartum depression and for that reason specifically prescribed for that target group.

You can copy Lurius' smart move to circumvent this all together by asking Dr. De Ridder to prescribe intranasal Oxytocin. It's weird how the prescription protocol in Europe works, but there are apparently loopholes that you can use to your own advantage. You can hook him up via an online consultation. Only thing you need to keep in mind is that you have to pay a fee of 80 euros.

Et voilà, here's the link in case you're interested:

https://www.brai3n.com/en/practical/

 

Hm, I can play the postpartum depression card. Thanks @Christiaan.