Continuing search for best care for adult daughter with health-related OCD

[Dadof2kids3cats]

Hello,

Concerned father here again. Our daughter Lynn left her residential placement early, with our support, primarily because they didn’t even seem to be able to handle basic medication management. She is now at home with us again, but continues to have spells of severe anxiety about whether one or another pain or other sensation may herald a life-threatening medical crisis. (This morning she called 911 because we would not take her to the ER for what would have been the 11th or 12th time this year. She ultimately accepted reassurance from the ambulance medics and did not insist on their taking her to the hospital, but it was a close call.)

Lynn is back in the care of her regular psychiatrist and is starting with a new therapist who was recommended by her psychiatrist and has extensive experience with patients with health-related anxieties. She has been started on a trial of Prozac and stepped up to 40 mg a few days ago; we are aware that we should not expect to see any effects for several weeks and that she may need a higher dose. We are somewhat puzzled by the therapy referral since the new therapist plans to use ACT and not ERP, but we figure that Lynn should give it a try given her psychiatrist’s recommendation.

If that doesn’t seem to be working, our next step will probably be to look for the best local OCD/ERP therapist we can find providing individual therapy, whether or not they take insurance*. Lynn has done ERP with a few therapists over the last several years, mostly through NOCD, but has not found them to be a lot of help.

In that context, we would welcome any recommendations that you can offer, either for specific therapists offering services in or near our area (Montgomery County, MD, just north of Washington DC) or for where/how to identify the best available providers. We would also welcome any comments from those of you who have had ACT as a treatment for OCD. Thank you.

*We are also keeping in mind the possibility of sending her for the Bergen Method treatment in Los Angeles, and/or of seeking an I-CBT therapist. One nearby I-CBT authority (Sally Winston of the Anxiety and Stress Disorders Institute of Maryland) told us that an “expert” could treat Lynn using I-CBT even though her anxiety spells are triggered by specific sensory experiences, but also recommended that we try ERP first.

[SCC1]

I'm sorry you are having a difficult time. I haven't tried ACT or ERP, but I know from this forum that it does help. I hope you can find some relief for her soon. I wish you good luck. Keep searching even if right now things don't fall into place; your daughter will eventually find the right treatment plan for her even if it takes more time. You are a good father to her and I think it's wonderful that you support her so much. Take care.

[Natureloverpeace]

ACT can be very help for OCD when used as an adjunct to ERP but it isn’t recommended as the primary treatment for OCD. ERP by an appropriately trained OCD specialist is the gold star treatment for OCD because it has the best data for its efficacy. Unfortunately, there are therapists who claim to be OCD specialists but aren’t, or say they know how to treat OCD but they don’t. I probably shouldn’t mention this here but I will. A certain OCD expert, I don’t want to mention names, said issues are being raised about the competency of some of the clinicians at NOCD. This was about six months ago. His recommendation was to only use NOCD for mild cases. The IOCDF is not recommending I-CBT at this point because it’s lacking sufficient evidence for its efficacy. There may be sufficient evidence down the road but it’s currently lacking.

[Scouns]

I am here to tell you that what you are currently doing for her will not work. She NEEDS I-cbt. ERP especially since she has done it before can only take some people too far. Please listen to me when I tell you to try I-cbt. Also Prozac is not a good drug for ocd and neither is 40mg. You NEED to find her a psych who is an expert in ocd. It’s common knowledge that Prozac is a great pill for depression but it can ramp up anxiety. In my opinion and from my experience she needs to be on Luvox 250-300mg or Zoloft at least 300mg. A psych who is an expert in treating ocd will know this. In a place like where you live you should be able to find one. As far as therapy Google Inference based cbt and there is a list of trained providers in each state. I’m not trying to sound rude so I hope you don’t take it that way but just doing what she’s already done with erp or act is just more time that your daughter will spend spinning her wheels. She needs more specialized care. She needs I-cbt or the Bergen method (I have not been able to try this due to money) but if you can afford this I’d skip the erp and act and do it! Best of luck! Please let me know how things are going for her. I know how she feels and it sucks. But the I-cbt and the Luvox have done more for me in 20 years than anything. I really want to do Bergen.

[Phoenyx in reply to Scouns]

Hi there. I am currently on Venlafaxine (not really working for me) and my doc will be changing me to Luvox. How long did it take you to feel better on it?

I did ERP with NOCD and after every session I would have severe anxiety for days. I had to stop it. Honestly I feel better without it.

[Scouns in reply to Phoenyx]

Hey- well I can’t really tell you yet. I was on 300 of Zoloft. Wirh resperidone. I am still in the process of iterating off Zoloft and onto Luvox. Right now I’m down to 50 of Zoloft and 200 of Luvox and 200 of seroquel but sadly I have not felt any different yet. But to be fair I have never responded to anything. It works great for my friend though! She said it took 3-4 weeks to notice

[Phoenyx in reply to Scouns]

did Zoloft helped a little bit at least or not at all?

[Scouns in reply to Phoenyx]

The Zoloft never did a thing for me. But I may not be a good one to ask. Or you may be treatment resistant like me. I can’t remember the percentage but SSRIs antipsychotics and benzos only work for some people. OCD is difficult to treat with meds and they have to be at very high doses according to my Dr. I took Zoloft at 300mg for 6 months and never felt any better.

[Phoenyx in reply to Scouns]

I’m so sorry to hear that

[SCC1 in reply to Scouns]

Hi Scouns. How long have you been on the seroquel, risperdal and luvox if you can say. I'm on all those-175mg luvox, 1.5mg risperdal and 25-50mg seroquel. The luvox by itself doesn't do much, but I also take effexor, which helps it work better. The risperdal and seroquel were prescribed to me for anxiety and as antipsychotics.

[Scouns in reply to SCC1]

SSCI- hello- I first want to say that I am NOT in any way a dr or in the medical profession. I do however feel like from experience and research I know a lot about how psychiatric meds work. And I am wondering what type of Dr is prescribing this combination to you? It doesn’t sound like a protocol that a psychiatrist would think was very safe. First off Luvox is an SSRI. And Effexor is an SNRI. Different classes but similar in that they both boost serotonin levels. But taking 2 of these types of drugs can cause serotonin syndrome that is not good. 2 antipsychotics also seems very weird to take at the same time. 1.5 mg of risperidal is low but the 50 of seroquel isn’t low or high really. But they usually aren’t taken together. Like I said I’m no dr. But when I used to get my mental health care from a regular medical dr I was always on these types of concoctions . but when I started seeing a psychiatrist who knows how to treat ocd it became much different and much more intentional and not just throw this and that at it and cross our fingers. I think that the Effexor and Luvox together at low/medium doses is silly. If I were you I would talk to your dr about coming off the Effexor and going high with Luvox. Like 250-300mg. And on your antipsychotics- I would have your dr help you choose 1 or the other and I’m not really sure about what a high dose of risperidol is but I’m on 200 of seroquel a day. I’m sorry I can’t tell you if it’s working for me yet because as you probably know it takes weeks to tell a difference. I have noticed a slight difference and am hoping for more as I keep going up to reach the 300 of Luvox. I’m titrating slowly. I hope I don’t sound like a big know it all or like I think I’m a dr. I just know all that you’re on is a very strange combo.

Also I took risperidol for 2 years. Been on Luvox and seroquel about 4 weeks but have not reached the ocd therapeutic dose yet.

[SCC1 in reply to Scouns]

I didn't know effexor was an SNRI. No one ever told me, just prescribed it. I'm on both seroquel and risperdal because I also have another mental illness that requires both. If I don't have them, I feel the effects-feel worse with the other illness. The risperdal is a med that doesn't lose its ability to work; I've been on it most of the time since I was 15, now almost 50. One is helping the other I think. My Dr is trying to get me off of some meds because I'm on so many. I was on a higher dose of seroquel previously, but am now down to the 25mg/day. I can also use it for anxiety my Dr said. I feel like I know a lot about meds, too, because I've been a "patient" for a lot of my life. I've been on every med you can be on for the mental stuff; some work for awhile then stop. If I don't have any one of the meds I'm currently on, I feel worse.

[Phoenyx in reply to SCC1]

I am on Effexor and it doesn’t really work for me. For the most part of the day/night I have constant anxiety and if I don’t have anxiety I have intrusive thoughts

[Scouns in reply to Phoenyx]

Well I am assuming since you are on this forum that you have ocd and if that is the case I am not surprised that Effexor isn't much help. I know it can help some people with anxiety and depression but according to my psychiatrist SNRIs aren't usually the first line of treatment for ocd. And again, OCD requires very high doses to impact OCD. For example the reccommended highest dose for Zoloft is 200mg a day. But with ocd, it has been approved and proven to be affective for ocd at 300mg. Some drs even go up to 400mg but according to mine, if 300mg doesn't touch it, 400mg isn't going to either.

[Phoenyx in reply to Scouns]

I was on Lexapro for years and it worked okay not great but okay for me. It stopped working recently and my psychiatrist changed it to Effexor. I was surprised but I didn’t want to be rude and question her expertise. But as I mentioned before Effexor doesn’t do anything for me and when I brought this to my doc, she seemed frustrated with my statement. Long story short I changed the doc 🫣! She is changing my antipsychotic meds right now and in a week will start tempering Effexor and switching to Luvox. I also read OCD requires high doses. I’m willing to try ANYTHING

[Scouns in reply to Phoenyx]

I know EXACTLY how you feel!!! I have been in that situation with so many of my drs. I would sit there feeling ashamed asking to change again, while she would huff and puff and make me feel like a freak. Or a baby. I finally decided that I am gonna have to be my own advocate and started switching drs. I had one psychiatrist that I messaged on the MESSAGING PORTAL that's sole purpose was to use to message her when it was out of office hours. I messaged her 3 times that weekend for different thoughts on what we could try that I had read about and she literally scolded me for messaging her multiple times and acted shocked that I would do that. I told her you do realize that you are treating me for OCD. The disorder KNOWN for being obsessive and repetitive and based on rumination. Im 44 years old and she looks about 27 and is a nurse practitioner psychiatrist and I immediately found a new one. I've never felt more degraded. To be honest with you over the span of the last 21 years, when I started medication for this monster, I have been on every single SSRI and SNRI adn nothing has helped. I have been on many antipsychotics and benzos and none have helped. It seems weird to me that no medications affect me in any way. And it scares me in a way. I was on 20mg of valium 2 times a day (under dr supervision) and I might as well have been taking a sugar pill. No effect. Not even sedation. No one really knows why that is. All I hear is treatment resisitent. They have recommeded Deep Brain Simulation and Transcranial Magnetic Stimulation but where I live is 3 hours away from the closest place that does that and it's not a 1 day thing. It's every day for like 6 weeks. And my insurance of course won't cover anything that could actually help. I found out that there were OCD specific residential treatment facilities this summer. I am a school counselor so I thought wow! I could go to one of those for a few months in the summer and maybe get better! What a joy I thought I had found. Until I called and found out that even with insurance doing their 80%, my 20% out of pocket was still going to be anywere between $20,000-$40,000. When they told me this I seriously just started laughing. I told her - how does anyone afford that? And she said, well some people use credit cards or borrow or get loans or just self pay. And I thought, wow, isn't it sad that only the wealthy can get mental health help. To tell you the truth Luvox, which I am still working up to 300mg, is sort of my last ditch effort. It's the last SSRI I haven't tried, which is so weird to me because if you research ocd, it's one of the most recommended ones. So here I am. I have no advice really because I have had nothing calm this monster. I go to work. then I come home and spend some time online trying to find sollutions to this madness. I'm a dang good school counselor. But as I sit there with kids who come in and have high levels of anxiety or rumination I just want to cry and tell them, listen kid, I don't know what to tell ya. I just had a panic attack from ocd a few minutes before you came in and when you find the answer you tell me. haha. It is almost so sad and hopeless that it's funny. Even ketamine therapy that they promised me would fix it, was the biggest most expensive scam ever. I basically legally hallucinated in a cozy looking room for 45 minutes every few weeks and spent my life savings because I trusted them. I sold some of my furniture and downgraded my car to be able to have the money to pay for it, since of course insurance won't help. I spent thousands and it did nothing. And when my sessions were done, and they knew that I was still just as bad off as I was when I came in, they shrugged and wished me best of luck. I'm a single mom of 3 whose husband bailed because he couldn't handle having a wife with ocd. And those people scammed me with promises that ketamine was the answer.

[Phoenyx in reply to Scouns]

Wow, I can’t believe you are resistant to every medication. I’ve always thought people with OCD must be one of the strongest and most resilient but you deserve a medal. I have one kid and I’m barely functioning let alone having three!

Btw my first ever treatment was a combo of SSRI & Tetracyclic antidepressant and it worked magics. Have you ever been on tetracyclic one before like Anafranil?

[Scouns in reply to Phoenyx]

I never have been on one of those. I've heard of Anafranil but had no idea what it was. None of my drs ever have suggested that. I'll look into it.

[Phoenyx in reply to Scouns]

Check it out. It has lots of weird side effects but people with OCD swear by it

[Scouns in reply to Phoenyx]

just curious - if the ssri and tetra worked magic for you, why did you stop them?

[Phoenyx in reply to Scouns]

They prescribed them when I had my very first OCD episode. Stupid me, I stopped them about two years later thinking I am all cured and sure enough OCD came back. Then my doc put me on completely new meds (Lexapro) which never worked as good as the first combo.

[SCC1 in reply to Phoenyx]

Can you ask to be put back on them?

[Phoenyx in reply to SCC1]

my new doc wants me to try Luvox- it doesn’t have as many side effects as Anafranil but to be honest I never experienced side effects on tricyclic antidepressants

[Dadof2kids3cats in reply to Phoenyx]

So, have you found the Anafranil helpful? I've suggested to our daughter that it might be worth a try if the Prozac doesn't work (although she might also try Luvox and/or TMS first). I'm aware of it because my wife--who also has OCD-- was an early adopter and was on it for many years. My impression is that it has been largely replaced by the SSRIs now, but that it does sometimes help patients who don't respond to SSRIs

[Phoenyx in reply to Dadof2kids3cats]

You are absolutely right! It is largely replaced by SNRIs and SSRIs. Tricyclic ones have much more side effects (although I didn’t experience any) and cannot be mixed with certain medications.

I don’t remember the name of the tricyclic antidepressant I was put on, but it brought me back to life in as short as three month. I had no OCD symptoms whatsoever

[SCC1 in reply to Phoenyx]

Effexor doesn't do much for me by itself, but I think it is helping the luvox work because without it I don't feel much better. It's weird that luvox would work with effexor, since effexor hardly helps. Maybe there's a little of it that pushes the luvox to work better. I don't know. I'm wondering why luvox doesn't work better period.

[Phoenyx in reply to SCC1]

Have you been only on Luvox? I’ve read lots of positive reviews about it

[SCC1 in reply to Phoenyx]

No, never by itself. I always had the effexor. When that stopped working (I've been on it over 10 yrs maybe), I was prescribed luvox. It does something but with the effexor, it is better. I've only taken luvox 2x without the effexor and I still felt not so good.

[SCC1 in reply to Phoenyx]

I also have heard positive things about it. Maybe I'm not on a high enough dose but my Dr doesn't want me on anything higher since I'm on so many meds already. But I think I will ask her if I can get off the effexor and increase the luvox.

[Scouns in reply to SCC1]

I think that's an awesome idea. Let me know how that goes for you.

[SCC1 in reply to Scouns]

Thank you! I just spoke to her 2 days ago and don't have another appt til next mth, but I'm going to call her and see what she thinks. At least I'll be getting off one med if she agrees!

[Phoenyx in reply to SCC1]

I think that’s a great idea

[SCC1 in reply to Phoenyx]

Thank you. 🙂

[Scouns]

I can't wait to see if it helps you! Mental health treatment is such stupid trial and error and it's just not fair!

[SCC1 in reply to Scouns]

I hope so. I know! The mind is so complicated. So many different ways things could go and everyone responds differently. It does suck.

[SCC1 in reply to Scouns]

Hi Scouns! Just wanted to let you know I asked my Dr about the effexor-luvox situation, and she is having me take the effexor in the AM instead of at night. So, now I feel better in the daytime. I've only been on that schedule for 3 days, but it's working better than with the effexor at night. I'll see what happens down the road if it still works that way. 🙂

[LuvSun]

Hello- have you looked into Sheppard Pratt in MD or John Hershfield in MD?