TMS, OCD, Depression

[lgliser]

Hi,

I have seen a few threads here that mention TMS. Has anyone done it for OCD? I'm looking into it for my 16 year old daughter. Her primary diagnosis is OCD but she's also depressed. I'm just starting to research and it's pretty overwhelming! I'd love to hear anyone's experiences.

[Melissa Louise]

@maize

[maize]

My son did TMS for OCD and depression at 16. It was helpful, I strongly recommend doing both protocols if you do it; you might see about adding on an anxiety protocol as well. The clinic we work with charges for one protocol but will do up to three per session.

There are two challenges: finding a clinic that will treat adolescents,  and paying for treatment. In the US, TMS is FDA-approved for depression and OCD for ages 18+. This means most insurance won't pay for treatment for people under 18; we had to pay out of pocket for my son when he was 16. He's turning 18 soon and we are planning to do another round of treatments after his birthday. 

[maize]

Our other TMS experience has been for my husband,  who has done four rounds in the past four years. He does primarily the depression protocol, though this last time he did an anxiety protocol as well. He's never done the OCD protocol but the treatments he has done do help with his OCD symptoms (his are on the milder side and depression is the predominant issue). One thing we have noticed is that, while symptoms do improve over the course of treatment,  the biggest gains actually seem to come in the month after treatment; I've speculated that this is when the brain consolidates and reinforces new neural pathways and patterns. He seems to need to repeat the treatment every 6-12 months, but it has made a huge difference in his mental health and functioning. He has struggled with depression and anxiety his entire adult life and has been in treatment via medication and therapy for decades. TMS is the first treatment we have found that seems to actually get his brain functioning in a healthy way. He does still take an SSRI medication as well.

[maize]

The clinics we have been to use the Brainsway machine. 

Edited July 23, 2023 by maize

[lgliser]

Thank you! We have found two clinics near us who will do it for a 16 year old. I'm not sure yet if insurance will cover it. One of the clinics uses Brainsway and the doctor there says it works the best because it goes deeper. The other clinic, I think it actually has a Brainsway one too, but says that it's really the number of pulses that makes the difference. This clinic also has an option to do 5 very long days in a row of multiple treatments. While it would be amazing to be done sooner, is that going to just be way too much for a 16 year old??

I didn't realize that the effects wore off. That's too bad. Does your insurance keep covering the other sessions?

Most things I read are either really positive or just "it didn't work," but I did find a FB group that has members who claim they were permanently damaged in one way or another by TMS. Do you have any thoughts on that? I can deal with it just not working but permanent damage is another story.

 

[maize]

Neither my husband nor my son has experienced any notable side effects, let alone long-term damage. My sister has also done TMS twice with positive and no long-term negative effects. Unlike my husband and son she found the pulses hard to handle--they set off a strong emotional reaction for her, which I haven't heard of from anyone else. She still found that the benefits outweighed the difficulty of the treatment for her.

Whether TMS needs to be re-done seems to depend on the individual. The tech who did my husband's most recent treatment series said that about half their patients end up coming back at some point for a second round. My husband is among a minority who seem to need and benefit from repeated treatments over time.  Insurance has covered the majority of the cost for him each time.

I don't know much about the intensive accelerated treatment option, I've talked to one person who did it and found benefit for depression. Insurance coverage is most likely for the once-a-day-for-six-weeks protocol because that's the current standard that has FDA approval. Doesn't mean it's the best option, just the most established.

[lgliser]

I appreciate your advice and hearing your experience!

Another thing I wonder is if we should focus on the OCD or the depression first. The OCD came first, about a year ago. The depression is new, and I think it's because OCD seems so hopeless 😞

[maize]

1 hour ago, lgliser said:

I appreciate your advice and hearing your experience!

Another thing I wonder is if we should focus on the OCD or the depression first. The OCD came first, about a year ago. The depression is new, and I think it's because OCD seems so hopeless 😞

For TMS, you might be able to do both simultaneously; that is what my son did--both OCD and depression protocols in each session.

According to our psychiatrist depression is easier to get insurance approval for. And I think response rates are better. OCD in general is just a beast to find effective treatment for ((())).

[lgliser]

We went to a clinic today and they did a free demo session on her.

It was weird. They "map" her first. So they do a pulse on her brain until her toe is made to move. It took forever and he said it really never takes that long and that kind of indicates how bad the OCD is

They finally thought they saw a twitch (Miss 16 and I don't really agree) so they went ahead and did the treatment in the spot they thought was best. She said it didn't hurt but does have a headache now. Also being the all-knowing, coolest 16 year old around, she thinks the whole thing is dumb and won't work.

[maize]

Yes, they use toe twitches to test the motor threshold for OCD. For depression the do thumb twitches (different part of the brain). 

[lgliser]

Ya, I get that, but we did not see a twitch! And I just don't know that I buy the "ocd is too strong" reason that it took so long.

[maize]

25 minutes ago, lgliser said:

Ya, I get that, but we did not see a twitch! And I just don't know that I buy the "ocd is too strong" reason that it took so long.

I don't buy that explanation either.

I do think the technicians can get really good at seeing what they are looking for; I couldn't always see the twitches the technician claimed to see when I went with dh, but the treatments did work.

[PeterPan]

Not to sidetrack from the tms idea too much, but I will quietly suggest that running genetics for little things that contribute to the anxiety/ocd can be enlightening. Sometimes it's really simple stuff you dredge up, like a zinc transporter defect. And I know it's terribly nosey, but did they try a variety of meds? I swear sometimes it's like these pdocs want to use the meds that are supposedly lower side effects or less risky with younger people rather than getting to the med they actually need. Sometimes a smaller dose of something you thought you didn't want gets you there. I'm a huge fan of fluvoxamine these days. Has she had covid or did she have it around the time in her surge in symptoms? I'm sort of borderline on the ocd thing and it goes over the top for me when I get the inflammation of covid. Only a couple of the ssri type meds take down brain inflammation and some actually go the opposite direction, making it WORSE! I had one (really not nice word) doctor prescribe citalopram when I went in specifically asking for fluvoxamine. Oh my that made the symptoms SO much worse. Got my regular doc then to get me the fluvoxamine, and it's genius.

Not knocking the tms because we've had it suggested for peeps in our house too. It doesn't really sound like the clinic you went to is nailing it, sigh, if they're blowing you off and not listening. Not a good sign. I'd at least want a tech or doctor higher up the totem pole for the next appointment or another system.

16 is a hard age anyway with chemistry changes. Yes, I think I'd approach the OCD some fresh ways if that predates the depression. Have you thought about a change of place? Could she handle a vacation? Cruising is really happy and chilled and the fresh air can do wonders for inflammation and poor health... Maybe find the cheapest last minute cruise you could go on for a week. Cheaper than treatments, won't hurt, might help. 

[lgliser]

Peter Pan, I love the way you think.

So here's what we've done. She developed OCD about a year ago, though we can now think of smaller signs of it longer ago than that, but it really exploded a year ago. Since then, she has started ERP therapy (the gold standard) with NOCD (online therapists). She has tried Prozac, Zoloft, Viibryd, and Cymbalta. High doses, since that's what's typically needed for OCD. The Prozac and Zoloft were before we did the gene sight test, which showed those two in the yellow column, so that's why we tried the Viibryd, which was pretty horrible, so now the Cymbalta. Our doctor has been hesitant to try fluvoxamine because of side effects, but I have asked. In February we traveled to Houston to work with Dr. Chad Brandt who does the Bergen Method for OCD - a 4 day intense treatment. It was great. It was like we had our daughter back. For about 2 months. Then OCD started creeping back and it's back full force now, plus some depression because she feels like nothing works. 

She didn't have Covid when the symptoms started, but she has had it. What SSRIs help with brain inflammation? Where would I go and what would we ask for for the genetic testing? We did visit a functional medicine doctor but it's so much $$$$. We've thought about homeopathy too but I don't know what I think about that. 

The really good thing is, while her OCD is severe on the YBOCS, she is still able to have a life. She goes to school (though her grades have slipped), she does things with friends, etc. It's mostly around the house where she can't function much.  I'm afraid of her world getting smaller if we don't get it under control though.

Oh and we do have a vacation coming up in a week. We're going to a beach and she's very excited. I think she'll be good on vacation. I think she'll be the same when we get back home though.

There is another TMS clinic we have a consultation with. I think they have a doctor actually there, whereas this first one didn't! 

[mindinggaps]

I don't know anything about TMS, but just wanted to reach out and offer my support. We're also struggling with OCD. My 7 year old daughter was diagnosed earlier this year and has suffered quite a bit. Right now we're treating with a fairly high dosage of Prozac and ERP. I am by no means an expert buy just wanted to pass on best wishes. There have been a few folks here with OCD children that have been super helpful and supportive to me. It's made a big difference.

[lgliser]

27 minutes ago, mindinggaps said:

I don't know anything about TMS, but just wanted to reach out and offer my support. We're also struggling with OCD. My 7 year old daughter was diagnosed earlier this year and has suffered quite a bit. Right now we're treating with a fairly high dosage of Prozac and ERP. I am by no means an expert buy just wanted to pass on best wishes. There have been a few folks here with OCD children that have been super helpful and supportive to me. It's made a big difference.

Hi there, so sorry you're going through that too! Are you familiar with Natasha Daniels? Her videos and FB group have been really helpful. It's a pretty sucky journey!

[Kidlit]

2 hours ago, lgliser said:

Peter Pan, I love the way you think.

So here's what we've done. She developed OCD about a year ago, though we can now think of smaller signs of it longer ago than that, but it really exploded a year ago. Since then, she has started ERP therapy (the gold standard) with NOCD (online therapists). She has tried Prozac, Zoloft, Viibryd, and Cymbalta. High doses, since that's what's typically needed for OCD. The Prozac and Zoloft were before we did the gene sight test, which showed those two in the yellow column, so that's why we tried the Viibryd, which was pretty horrible, so now the Cymbalta. Our doctor has been hesitant to try fluvoxamine because of side effects, but I have asked. In February we traveled to Houston to work with Dr. Chad Brandt who does the Bergen Method for OCD - a 4 day intense treatment. It was great. It was like we had our daughter back. For about 2 months. Then OCD started creeping back and it's back full force now, plus some depression because she feels like nothing works. 

She didn't have Covid when the symptoms started, but she has had it. What SSRIs help with brain inflammation? Where would I go and what would we ask for for the genetic testing? We did visit a functional medicine doctor but it's so much $$$$. We've thought about homeopathy too but I don't know what I think about that. 

The really good thing is, while her OCD is severe on the YBOCS, she is still able to have a life. She goes to school (though her grades have slipped), she does things with friends, etc. It's mostly around the house where she can't function much.  I'm afraid of her world getting smaller if we don't get it under control though.

Oh and we do have a vacation coming up in a week. We're going to a beach and she's very excited. I think she'll be good on vacation. I think she'll be the same when we get back home though.

There is another TMS clinic we have a consultation with. I think they have a doctor actually there, whereas this first one didn't! 

Our OCD journey started many years ago, but iirc, the Genesite test did not put fluoxetine in the green for us but  the doc (whom we have the highest regard for) intuitively (for lack of a better word--the doc has loads of experience with pediatric ocd cases) chose it as the first line and it worked well, fwiw. 

[mindinggaps]

20 hours ago, Kidlit said:

Our OCD journey started many years ago, but iirc, the Genesite test did not put fluoxetine in the green for us but  the doc (whom we have the highest regard for) intuitively (for lack of a better word--the doc has loads of experience with pediatric ocd cases) chose it as the first line and it worked well, fwiw. 

For what it's worth, our psychiatrist actively discouraged the use of genetic testing and said that while it provides insight into how the medication is metabolized, there is little medical evidence to suggest that they provide any accurate predictions of treatment efficacy. She said that FDA does not recommend them to choose a treatment and sent us this to read: https://www.health.harvard.edu/blog/gene-testing-to-guide-antidepressant-treatment-has-its-time-arrived-2019100917964

She said that fluoxetine is typically the first line treatment for pediatric OCD so we also started with it following her recommendation and have had success.

[Terabith]

2 hours ago, mindinggaps said:

For what it's worth, our psychiatrist actively discouraged the use of genetic testing and said that while it provides insight into how the medication is metabolized, there is little medical evidence to suggest that they provide any accurate predictions of treatment efficacy. She said that FDA does not recommend them to choose a treatment and sent us this to read: https://www.health.harvard.edu/blog/gene-testing-to-guide-antidepressant-treatment-has-its-time-arrived-2019100917964

She said that fluoxetine is typically the first line treatment for pediatric OCD so we also started with it following her recommendation and have had success.

That was my understanding about genetic testing as well.

[Kidlit]

This was almost a decade ago, but I definitely got the impression then that the genetic testing was more to attempt to set parents at ease than anything. 

[KSera]

3 hours ago, mindinggaps said:

For what it's worth, our psychiatrist actively discouraged the use of genetic testing and said that while it provides insight into how the medication is metabolized, there is little medical evidence to suggest that they provide any accurate predictions of treatment efficacy. She said that FDA does not recommend them to choose a treatment and sent us this to read: https://www.health.harvard.edu/blog/gene-testing-to-guide-antidepressant-treatment-has-its-time-arrived-2019100917964

She said that fluoxetine is typically the first line treatment for pediatric OCD so we also started with it following her recommendation and have had success.

This is what everything I’ve read about it suggests as well. Some people talk about it like it’s a reliable way to get clear answers, but it sounds like at best it might sometimes rule out things that are less likely to be effective/more likely to have side effects for a given person.