I was last here in August when our daughter was hospitalized after a spike in her health anxiety OCD had her going to the ER several times a week in fear that she might be having a heart attack or pulmonary embolism (she is 24 and severely overweight but otherwise in good physical health). She subsequently spent nine days in residential care, but we pulled her out early because they seemed to be messing up her medications.
Since then she has been at home but is now wondering if she should be back in residential care. Her psych provider has stepped her up to 80 mg/day of Prozac; she is also getting buspirone and (hopefully on a temporary basis) clonazepam. Her symptoms were much lessened for about a month from late September to late October, but have since gotten worse again—she speculates that she was initially getting a lot of help from the clonazepam but that she has habituated to it—and her frequent ER trips have resumed. She has also taken to singing or humming frequently to reassure herself that she is breathing well.
Lynn says that she understands that the ER visits do not help in the long run, but that in between visits her anxiety builds and does not abate, and that eventually she feels compelled to choose between going to the ER and waiting to see if she is going to die. She was doing I-CBT with a therapist for a couple of months, but has now put it on hold because she was not finding it to help much; she feels too vulnerable to handle ERP at present.
On Tuesday she will be talking with her psych provider about a possible return to residential care, and also about possible further increases in her Prozac dosage (to 100 or 120.) We recently read a briefing prepared by a Dr Hudak at the University of Pittsburgh; he suggests that such high doses of Prozac are often needed to address treatment-resistant OCD. He also says that it can take 12-16 weeks to get the desired effect even at what turns out to be an effective dosage. I have encouraged Lynn to try to be patient while we continue to explore her medication options (augmentation with clomipramine or one of the atypical antipsychotics are also possibilities) but she understandably has difficulty with that prospect.
Mostly I am posting this just to share, but would also welcome some comment on the possibility of her returning to residential treatment. Lynn might well benefit from the additional structure that she would get from residential. She is also attracted to residential as an option because she thinks it would guarantee that someone would be on hand if she DID have a major medical event—this would reduce her distress and her impulse to go to the ER, but it seems to me as if it would be an accommodation of the OCD rather than a treatment, and perhaps just as much so as the ER visits. We are also concerned that this could again disrupt the continuity of her medication treatment.
In this context, can any of you recommend a residential program within 40-50 miles of Washington DC that might be appropriate for her? (No, we are not considering the Johns Hopkins $3000/day “Retreat”!). We are not necessarily looking for OCD-specific therapy offerings at the moment--although Lynn does want to do therapy work on her current underlying anxieties about adulthood and life direction, which she believes are making her OCD worse—but would like to be confident that she goes someplace that would manage her medication well and that has competent and compassionate staff. (For better or worse, Lynn is also pretty resistant to the idea of going into a program that puts a heavy emphasis on physical fitness.)
Finally, wondering if we should also/instead be seeking a consultation with a higher level OCD medical specialist at this point—maybe someone at Johns Hopkins, the Cleveland Clinic, or the Mayo Clinic—who might be able to provide more guidance on Lynn’s medication choices and possible residential care options.
All comments welcomed.
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Dadof2kids3cats
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I’m new to this but since she is resistant to meds have they tried deep brain TMS? It’s FDA approved and done on daily basis for a couple months. Non invasive. No meds involved
We have looked at some info on TMS for OCD and it is available in our area; we may pursue it if medication is unsuccessful. One concern we have about it is that while it is non-invasive, the required time commitment seems likely to make it difficult for a patient to hold a regular job, attend graduate school, or pursue many other "normal" life activities, especially since it would likely need to be repeated periodically.
Dr. Robert Hudak is one who has the expertise to prescribe the appropriate medications at effective dosages for OCD. Most psychiatrists and other licensed medication prescribers don’t have the specific expertise for this. He may be able to advise about the level of care needed for your daughter or refer you to an OCD Specialist for an assessment. There are only a handful of residential treatment options for OCD in the United States. I don’t know if I’m recalling your previous posts correctly or not but I don’t recall that she was in residential treatment specifically for OCD.
After a short hospitalization, Lynn was placed by the hospital with a nearby residential facility that did not have specific OCD expertise. She found the additional structure she was given there to be helpful, but also had a number of reservations about it; she left AMA but with our support after they botched her medication management. From what we have seen, it is not easy to find a well-regarded residential facility for mental health care even without seeking specific OCD expertise, especially if one is seeking one that would be covered by insurance.
I /we have done some research on residential facilities that do have OCD expertise. McLean Hospital in Boston appears to be one that is highly regarded, and also appears to be covered by our insurance, but according to the most recent report I saw they have a 6 month long waiting list. Lynn is currently seeking to complete the McLean application materials so that this will be an option if/when we have exhausted most of the others. Rogers is also well regarded and potentially covered by insurance and has several locations, but I have seen more critical remarks about their care from former patients. (I think they also have a long wait list.)
I was hoping to go to McLean Hospital in Boston myself. They just recently told me they've changed their policy, due to overcrowding, so they won't be taking out of state patients anymore.
Hi all, I have treatment resistant OCD as well. I do think Lynn should go to an OCD specialist to get a correct diagnosis. She seems to have panic disorder as well. I get that also. My wish to her is to not worry so much especially about her future. I know it's easier said than done. Can she try other things to focus on doing, for example artwork, ballroom dance, chess, whatever may peak her interest. I play in a tennis league as well as aTexas holdem league and those help me immensely. She is focusing too much on her inner self. I think there is an OCD in-patient opening in Virginia next year. The OCD foundation is a good website for resources, although, I find they do not answer the phone much. The website has a lot of information though. The OCD opening in Virginia has a clinic in Utah and are expanding. I can't remember their name though. PS: I was actually thinking of looking into the TMS as well.
The IOCDF livestream Ask the Experts will be having psychiatrists who specialize in OCD on more frequently starting in January. These livestreams are recorded if you can’t attend them when they air. I think I remember that you were using the IOCDF website which includes the livestream schedule and is one of the best websites for information and resources on OCD. Did I send you the contact info to join the Family and Loved Ones OCD virtual support group a few months ago? If I didn’t, I can send that if you’re interested, just let me know. They sometimes have psychiatrists who specialize in OCD and they send out a detailed list of resources by email after each group. Getting the appropriate level of care by providers who have the specific training and expertise to treat OCD is obviously important. The appropriate medication(s) at a dosage effective for OCD may also be helpful. Again, Dr. Hudak may be a good resource for you and he may have recommendations and can make referrals.
It's such an intractable condition anyway and there's a big problem with ERP - it's so difficult to do anyway, and when you need it most you're often too vulnerable and shaky to do it at all.
It's certainly true that OCD needs huge doses of SSRI meds to dampen it down. I'm on sertraline at 300 mg a day (the normal maximum is 200 mg a day).
I also take an antipsychotic called aripiprazole - I'm on 5 mg a day. I've found it helps but I have put on some weight. I'm not sure if it's down to the aripiprazole or not - I did put on about 15 pounds during lockdown - so check before giving the go-ahead for your daughter to take it as she's already overweight.
Do not - I repeat do not! - let her take the antipsychotic sulpiride (also know as Dolmatil and another name I can't remember). It makes you put on masses of weight.
I do think that OCD patients benefit from the structure of a residential placement - it's so easy to lose discipline if you don't have a regular routine, and OCD gets in the way of so much of what constitutes normality for most people.
I found a four-month residence on an OCD ward some years ago very helpful. It's quite a small unit, taking only 12 to 14 patients at any one time. I didn't have to pay because it's an NHS (National Health Service) facility - the only drawback was the NHS (or rather their outside caterers) food!
I'm sceptical about your daughter going on a general psychiatric ward though, as OCD needs more than just general treatment - talking therapies don't do much good with OCD, though it sounds that she might benefit from talking about her aims and ambitions. She does need to dip her toe in ERP but this should be done very gradually - at her own pace. A little progress can make a great difference.
I'm afraid being in England I can't recommend a residential program near Washington DC, but you might find this link to the Oxford Cognitive Therapy Centre helpful. It's run by Professor Paul Salkovskis, who is an expert on OCD. Click on 'Resources' on the website - there are many helpful PDFs to download, and links to a few American resources as well.
Thank you! Lynn will be talking with Meghan, her psych provider, this afternoon. Meghan has already said to Lynn that they may want to put her on an augmenting medication (such as ariprazole); I've suggested that they may also want to discuss stepping her up past her current 80 mg dose of Prozac. I don't know whether they are likely to consider doing both at once. Dr. Hudak says that with OCD, SSRIs can take 12-16 weeks to show their effectiveness even at the maximum dose, which seems to argue for trying that first and waiting on an augmenting medication--on the other hand, I'd hate to wait 12-16 weeks and THEN find she also needs another medication. In any case, I don't suppose the sequencing or the timing is up to me....
It's so annoying having to wait for results when taking medication - but in my experience, the relief that comes when the medication starts to work is well worth it.
I've found the aripiprazole makes me feel more like my old self - enthusiastic and wanting to do things again. The sulpiride (the one I said makes you put on weight) didn't make any difference - I'm only glad I came off it before I piled on any more pounds!
Little steps with OCD - they can make a great difference. Any little bits of ERP your daughter manages to do are worth the effort. But she has to go at her own pace - it's no good forcing it.
Thanks! "Annoying" seems like a very polite way to put it. IDK the details of your OCD, but for Lynn, the spells when it is spiking and she is terrified that she might be about to die are pretty awful--and even when she is clear-minded and only mildly anxious, the thought that she does not know how long this will go on is very dispiriting
All right - instead of describing it as 'annoying' I shall say 'it sucks'! I know how intense an OCD spike can be - I had one earlier today while out shopping and mailing some letters. I'd not had one for quite a while.
The part of the brain involved in the spike - the amygdala - reacts intensely to any perceived threat. It quickly calms down once it understands that there isn't any real threat and rational thought takes over. But for those of us with OCD, it's like a faulty house or car alarm that keeps on going off for no good reason, and it's hard to learn to ignore it. And it's hard to learn to rationalize it.
I'm sure that your daughter knows perfectly well that there is no immediate danger of a heart attack or embolism or any other acute health problem, but her amygdala is still screaming at her and that makes it hard for her to listen to her own reason.
Thanks for updating us about your daughter - it's good to be able to follow her story. Please let her know that no matter how bad her OCD is, it doesn't have to rule her life the way it does now. Each little attempt to fight back against OCD is a little victory over it.
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