I have always been sensitive to sound, having hyperacusis, and wanted to give SSP a go – a therapy that works with sound (pop songs from the 70s-80’s) that are filtered in such a way that the inner ear gets stimulated as well as the whole vagus nerve, in order to create a sense of trust and connection and maybe even heal trauma.
photo : made with love by @Nathalie Frennet
I know, it sounds huge. And it probably is. Especially for a person like me, who needed her ‘Boules Quiès’ (wax ear plugs) to sleep since age 8 or so. And who now has about 6 pairs of Loop earplugs. I’m hypersensitive to sound (among other things). I had worked a little with the Tomatis method for teaching languages, so I liked the thought of working on myself through sound.
I just finished the therapy, and I’ve been feeling awful. I ended up having all the possible side effects. I even started medication due to inexplicable high blood pressure. For about a month, I had no clue what was going on: not only have I been uncomfortable, I also have ringing and popping in my ears, a brutalized nervous system, a dripping nose, and hypertension. And my digestive system has been upset for about 2 months now.
I developed an aversion against the songs I ‘had to’ listen to. (Could this be because they triggered memories of a period that was particularly difficult for me?)
OK. Here we are: ‘I had to’. I am so strict with myself, not only when working ‘on myself’, but also at home, or in my job. I want to do everything so perfectly well, that I tend to go beyond my body’s boundaries. Also, my ‘alexithymia‘ (inability to identify feelings and put them in words) made that I did not stop when my body had enough, and I just went on a little bit longer. Pushing myself. Not trusting my sensations. Wanting to do well.
Due to a miscommunication, I ended up listening to the music a tad bit too loud, and my nervous system got overstimulated. Hence the terrible state I have been in for weeks now. I even had bouts of anger. They were probably necessary, but very painful. I’m sorry for the people who were involved.
So there. This therapy has given me the opposite of the desired result : I got out of it as a pill popping nervous wreck, not to mention the state of my more subtle energetic bodies. Oh, and by the way: the origin of my ailments being the vagus nerve, none of my usual remedies and self regulation tricks work…
After having added 1+1+1+1+1+1 and done some research, I found out about the possible side effects of the therapy – and when presented to them, the facilitator confirmed. This gave me hope, as my high BP worried me and got my spiralling into more tension.
So now: one month without listening to SSP (though I’m not sure I’ll ever finish the 2 remaining hours), and see if in that time my nervous system recovers.
I can do yoga (restorative yoga would be fantastic), and other soft and healing activities. And whatever gives me fun. No difficult extra tasks, no hard discussions. Just healing and soft fluffy experiences from now on.
**** Disclaimer : I am sure the therapy can be good when done correctly. I think you need to feel supported, with a therapist that gives you the feeling they are available – and maybe extra attentive if you are 1) hypersensitive and 2) have alexithymia or 3) simply neurodiverse as I am. I am sure it can work if there are no grey zones and the information is given and received clearly. In my experience it failed due to different reasons I described : misunderstanding, combined with alexithymia and wanting to do too good and most of all : doing it on my own.
I am not sharing any links to sites about SSP, you can find plenty of information online.
I do think it is important to share this. The therapy is quite powerful, even though it says it is non invasive. May my experience may help someone to not make the same mistakes.
Traumageek also made a blog article about the subject of SSP and mentioned my blog !
And finally: here’s a little video of a very simple 1 minute exercise I tried. I like it and am doing it regularly now.
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Thank you so much, Sealant! I almost want to say: how lucky you are to have a boring moment at work (and get paid for it) 😉
How did you get to my blog, if I may ask? I know it’s a very personal blog and even though I get quite a few readers, people often read in silence.
It’s so nice to get a little response from time to time. I hope you enjoyed your lunch !
Thank you for sharing! I tried SSP, because I am sound sensitive as part of post-concussion syndrome that’s lasted a year and a half. Listening to music gives me a migraine, so I thought.. “wow! great! specially edited music intended to calm and regulate your nervous system?” But less than 30 seconds of the SSP music gave me a huge migraine… way faster and worse than any normal music. Digging deeper, I’m reading that the SSP music is filtered to CHALLENGE your brain, so that it learns to hone in on middle frequencies. But that means that it is also a cognitive challenge. Which is not what my brain wants right now. I want filters to make it EASIER to listen to music, more cognitively simple, not harder. It was refreshing to know I’m not the only one for whom SSP didn’t work, as most of the other info online talks about how helpful it is for auditory sensitivity. I’m sorry you had so many negative side effects, and I hope they’ve been improving!
Thank you so much, Michelle. for your comment and sharing a bit of your experience. Were you accompanied by a certified SSP therapist? I’m asking this because you had to go digging for information, which should not be the case. Hope you recovered well! To be honest, when I think back of the time I tried SSP, I feel a bit nauseous. It took me some time, a lot of rest and patience but I think I recovered, yes 😉 Also activities that help regulating the nervous system (walks in nature, bland/non spicy foods, down time reading books…) may help.
I too did not have a good response to SSP – I started to experience vertigo early on but very mild. I listened very slow (took me 4 months to get through hours 1-3) Never finished the last two hours because after hour 3 I experienced extreme fatigue, the runs and then daily vertigo which has continued for close to a month since finishing hour 3. Some days the vertigo is less but hasnt been totally gone. Im very disappointed in the program and the lack of informed consent from the providers that this could happen. Im grateful to hear your side effects took time to subside but eventually did. Im praying and hoping the same will be for me.
Hello JB,
Thank you so much for your comment. I’m sad to hear about the side effects you got, despite the time you took.
Did you have proper follow up sessions with your provider?
And yes, indeed, it appears that not enough is known about possible side effects. It must be awful to have vertigo for so long.
I hope you are getting better, I’m sure you are.
Yes I had sessions with the provider who was actually not helpful at all in helping with the side effects that a month later Im still experiencing to a large extent. Needless to say Im not a fan of the company and their ethics as there was no informed consent that this could happen. I am set to have a meeting with someone at Unyte to discuss further.
Oh wow, can you please keep me posted?
I don’t like that you have to sign a document that says Unyte declines all responsibility.
Should have rung a bell…
Thank you for staying in touch!
Marlene
Yes I’m very disappointed in the company and will make sure that anyone that I know who is looking into it that I do not recommend at all especially for the Long Covid population which I am a part of.
Thank you so much for posting this <3 as a late diagnosed 28 (soon to be 27 year old), it’s refreshing to read blog entries I resonate so much with. I found your blog after searching online if Sinead O’Connor was autistic after reading about her suicide and feeling similar feelings she’s had over the years. I’ve not been in a great place after being laid off in March, moving in with my partner and having no friends of my own in the area while also recovering from a knee surgery. I am so grateful for coming across your blog and seeing this exercise that I am starting as soon as I finish typing lol. I’m not familiar with SSP, but I am very sorry to hear about your experience and I’m happy you listened to your body <3
Thank you T R for your reply, it is a pleasure to read you.
I hope you are finding your way, the post diagnosis time can be a bit messy.
It is important to express yourself. Not many people understand, maybe some are scared or just not interested in what our autism means to us. That’s why I write, and participate in self help groups. Have you found online groiups that deal with late diagnosis?
Take good care, and don’t hesitate to reach out
🙂
Marlene
Update: had a zoom with one of the Unyte representatives and I was grateful that they didnt try to minimize or in anyway negate my experience. A full account was taken and we spoke at length as to the potential harming effects the protocol can have on some people. I specifically mentioned that many long covid survivors ( myself included) are desperate for any treatments that could help us as there is currently NO treatment for the complex illness that is Long Covid. I do feel she took my account seriously and also that I wasnt given any formal consent regarding any potential dramatic side effects. from my providers. She agreed that they need to educate their providers much more to avoid this continuing, as there are going to be many Long Haulers who are going to try SSP.. There are a few “health coaches” currently out there promoting SSP for Long Covid. So I wanted to make sure my experience was taken seriously, as I feel an obligation to the LC community to give them as much real experience with an untested protocol that could make the illness harder to recover from. I was offered support from a Unyte OT senior board member, which I am going to follow up with. All in all the response I received was supportive and my concerns taken seriously. I m still out the $$$ ( it wasnt inexpensive!) and the time that it will take to recover from the side effects , but I appreciate the support offered and my concerns being duly noted.
Thank you, Jody! I hope they will improve a bit indeed
I do too although its been over 2 moths and Im still dealing with vertigo, autonomic issues. The provider I was working with may not continue to use it as she too was very disappointed in the lack of informed consent from Unyte as to the harmful side effects that can be long term. Knowing it too you months to recover from your side effects, helps me have faith that I will too, just may take some time. Thank you for your blog!
thank you for sharing! That’s a good therapist you got there, who admits it is not totally on point. I don’t know how long it took me but I’m doing much better. Sometimes it’s a bit hard to define where a problem comes from, especially for people with alexithymia (I talked about this in other articles). I wish you good healing!