Our daughter currently WANTS (or thinks she wants) to be back in a psych ward or residential program even though she left a previous residential program AMA just two weeks ago. At times she seems almost OK, but at other times she is anguished and weeping about her fear of a life-threatening medical crisis. She is not so much looking for therapy, but for a place where she can feel “safe” while she waits to see if the medication she is on now will be effective: she finds her fears are much diminished when she is someplace where medical help would be immediately at hand if “something happens” to her.
We are not sure how to respond. On the one hand, if she goes back to the hospital and/or into a residential program, we have to worry about losing continuity of care and possibly putting her into the hands of caregivers who will not follow through on her current Prozac trial (as happened last time); it will also delay our efforts to get her into treatment with a therapist with experience in using ERP to treat health anxiety. On the other hand, if she stays at home, she is likely to insist on being taken to the ER or calling 911 at least 3 or 4 times a week—and even worse, she will be spending much of her time living with an intense fear of imminent death.
We also struggle with our own irrational belief that trying to explain to her one more time why she should not be worried is going to make a difference, which understandably makes her angry since it is clear that it doesn’t help. Even if the Prozac ultimately works for her, it is likely to be several more weeks before we see much effect—more than that if it turns out that she needs a higher dose. None of us are sure how we will make it through that.
Does anyone have advice for us?
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Dadof2kids3cats
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Imo, I think you should wait for ERP. If things will be the same while waiting for it you don't want to have it delayed by her going to a facility. Calling 911 is reassurance seeking and it doesn't seem to be getting anywhere. No matter how many times she calls, it will never be enough because of the OCD. It will continue to happen until she gets the proper help by seeing a ERP therapist. And I don't mean anything bad by this, but by calling 911 continuously, they might start requesting that you don't call unless it is a true emergency.
I didn't mean any of this to sound harsh; it was just my viewpoint. I hope you find something that works for your daughter. I know it's a hard thing to go through, for the person with OCD and for the people who care about them, too.
Dear Caring Dad - As someone who struggles with what I would call debilitating OCD and also a school counselor (oxymoron?) haha - I have to tell you, you are going through it and so is she and probably every other member of your family. OCD tends to be a disorder that wraps itself around all relationships. Your daughter right now seems to be living in hell. I have been there. In recent days even. But from your posts what she is experiencing is all encompassing, 24/7 critical condition ocd spirals. How old is she? How long has she experienced this? And I am in NO WAY saying that I have ocd figured out. But here is what I do know. And if she has tried this just move on to the next one. I am curious what all she has tried though.
1- The number one rule of OCD recovery treatment is to NOT engage in reassurance seeking which is a compulsion. And NOT to engage in ANY compulsions, which are almost always some form of reassurance seeking. Doing this is INCREDIBLY difficult because for a long time us OCDers have used our compulsions and reasurance seeking as our savior. Our solution. Our reason that we have to move on with our day. And now by not engaging in it, we are literally forced to "sit in" the "discomfort" of high levels of anxiety/panic/obsession that can literally feel like we are going to die because of how distressing it is. That's when meds like benzos can come in handy (Xanax, Valium, Klonipin) under the very strict guidance of a dr. These meds calm that feeling that we can't make it through the "resisiting asking for reassurance or doing our compulsion." But the problem is that engaging in that compulsion (calling 911 or going to the ER) is just reinforcing the obsessive behavior. It is CRUCIAL to the recovery of OCD. And in my opinion the biggest hurdle to jump.
2-From what I've read of your posts your daughter has been to several treatment programs or residential programs or maybe in patient stays. Is this correct? If so has she ever gone to a residential program that was specifically for OCD? They are out there although I have never been able to afford one and don't really see how anyone does. But if it is in your means, they do exist. And I believe they help.
3-I know I have told you about i-cbt. It is a cousin to ERP. But does not focus on the exposures as much. It is based on our inferences we make surrounding a situation. Namely a situation that we are triggered by. So for your daughter it may be like this: 1-Trigger-feels bump on skin 2- the obsessional doubt (worry/fear) -maybe I have cancer 3- the consequences of the doubt - If I have cancer I will be very sick and have to go through tests and scary medical procedures. 4-anxiety or discomfort - I won't be able to handle that level of pain or uncertainty of me living or dying 5 - The compulsive action - Reassurance from calling 911 or going to the ER or researching the web for hours or checking the bump a million times to see if it's still there. Make sense? So what she needs to do is place herself in the here and now. Use her senses to tell her information on what is happening and not her imagination. Saying things to herself like: What evidence do I have that I can SEE any report or documentaion or test ran that I have been diagnosed with cancer? What evidence do I have that I can HEAR a dr or medical professional telling me that I do in fact have cancer? What evidence do I have that I can FEEL symptoms or pain or physical issues that drs have confirmed are from me having cancer. What evidence do I have that I can TASTE that I have had to swallow pills or taken medication or chemo that shows that I am being treated for cancer. What evidence do I have that I can SMELL antiseptic or latex or hospital smells that tell me that I am being treated in a medical facility for cancer.?
This has changed things for me. Although it isn't easy. ERP is scary. And does not help everyone. For me i-cbt clicked.
I am so saddened by how OCD has robbed your daughter, and you guys and me of our lives. But after battling this since 5th grade, and being 44 and just now finding some relief through i-cbt, I just can't reccomend it enough. I think Prozac is not the best option for her since it can actually induce anxiety in OCD. Stupid side effect. I HIGHLY recommend that you find a psychiatrist who specializes in OCD. Not one that says she treats OCD, but one that SPECIALIZES in it. I have found that in my many differnt psychiatrists, that they don't learn a lot about ocd in medical school so it's difficult to find one who knows what they are dealing with. OCD is a sneaky bitch. Having my psychiatrist who is an expert in OCD has been a game changer for me. In my opinion (I am not a medical professional but have tried many meds) she needs to be on Zoloft or Luvox. And with one of those it needs to be a HIGH dose. Like 300mg. If you google 300mg Zoloft for OCD you won't find a lot but you will find that drs agree and that it has been proven through research that OCD only responds to a high therapeutic dose of meds. Also does she respond to benzos? I think you have to be very disciplined to take these and I don't know her age if she is an adult or not, but for a while when she is sitting in the horrible area of resisting compulsions, a benzo can help take some of that edge off. I never responded to them but I know many who have. Although they are highly addictive if taken against dr instructions. When I was young my mom used to administer them to me becuase I was worried about getting hooked. I never did.
Your daughter needs very focused, very consistent, very specialized OCD treatment. I can't imagine how exhausted you are trying to find treatment for her. I get it. If you tell me what area you live in, and you just don't have it in you to search anymore, I would be glad to digging in for some options that I think could help and are specialized. I live in Oklahoma which is a mental health wasteland but hey - I have OCD, so I can research the crap out of things haha! Let me know. She will make it! She just needs to zero in on specialized help. It's out there.
I appreciate your generosity sharing your experience and will tell some more about where we are at the moment. Sorry if some of what I write repeats things that I have already said. And/or if it seems to discount some of your advice.
Lynn is 24 and graduated from college last December. While she had a long history of OCD, her initial period of serious health anxiety was in January 2023 and compelled her to take a semester off of college in the middle of her senior year. She had few health anxiety spells while on leave or in her final semester in college in late 2023, but they began to recur in early 2024 after she was at home, and have become much more frequent since late July. She was hospitalized in a psych ward for five days in early August, and then spent nine days in a residential program before she left AMA (but with our support) because they seemed to be bungling her medication management.
She has now been on 40 mg of Prozac for two weeks, and her dosage will be raised in another two weeks if she is not feeling some effects by then. I gather that you are skeptical about Prozac for OCD, but from what I have gleaned online, it works well for many people, and I do not think it would make sense for her to drop it in mid-trial. If she reaches the maximum dose and she is still not getting an adequate effect, then she and her psychiatrist will try something else.
Lynn was also put on Klonopin 2x/day while she was in residential (I am not sure about the dosage); she is currently taking it once in the evening to help her ahead of getting to sleep, and prn in the morning. She was also prescribed gabapentin as a lower-risk prn medication while she was in residential, but based on her experience and what we have read, that may not be a good choice, especially since it takes a relatively long time to take effect; when she speaks with her psychiatrist on Tuesday, she will probably ask about whether she should be using a faster-acting prn (she was using hydroxyzine prn in the past, and got some benefits from it). She is also currently on Buspar.
At present, despite these medications, she often feels intensely fearful about dying imminently, especially in the evening. Her fears focus on specific health conditions that WOULD pose such a threat if they were real possibilities—heart attack, DVT, pulmonary embolism—which I think makes them even harder to fight off. They are “fed” by somewhat vague pains (perhaps psychogenic?) that are consistent with these fears (which also suggests to us that it might be difficult for her to use the evidence of her senses to effectively combat those fears.) She is also conscious that a severe weight problem puts her at higher risk for these problems, but has difficulty accepting that given her age and a lack of other risk factors, that risk is still very low.
She is particularly fearful of going to sleep alone (or sometimes, at all) because she fears she might die in her sleep. She is aware that this fear is probably from OCD but it still makes it difficult to function.
We are currently looking to start her with a new therapist with extensive experience with ERP, and preferably also with health anxiety. She has worked with a couple of therapists doing ERP over the last two years, but they had little experience with health anxiety and in general did not seem to be very good, so we don't think she has exhausted the possibilities of ERP. We have identified someone in our area who offers both ERP training (including BTTI certification) and a particular interest in health anxiety, and have emailed him; Lynn hopes to have an initial phone consultation with him early this week. If this doesn’t work out we are prepared to explore other possibilities including I-CBT, the Bergen method, and perhaps a stay at one of the OCD-specific residential programs that take insurance (there are a few, although they have long waiting lists. )
That is, assuming that we don’t all unravel before we get that far.
At this point we cannot seem to consistently make it through the day or more particularly the evening without Lynn going to the ER for reassurance. Lynn understands that this is probably “bad” in the medium run, but is often unable to fall asleep at night without such short-term reassurance. (We have already learned from experience that our trying to respond to her fears “rationally” does no good even in the short term.) We are hoping that adjustments in her medication and work with a new ERP therapist will give her the tools that she needs to do without this reassurance and move forward.
I hear you 100%. And I want Lynn to find peace. 24 years old is when it really ramped up for me. I know the pain and isolation and fear she is experiencing. I was thinking after reading your most recent post about her needing reassurance from the er most evenings. And possibly money is not an issue for you - but I would imagine that your bills are adding up and being terrified of a health fatality and being in a hospital probably creates a lot of discomfort for Lynn. I'm just guessing. So right now, where she is, may not be the best time to start resisting compulsions until she gets some good professional guidance in how to do it. I know if I would have to do that on my own with no training and guidance it would be impossible, because OCD in many ways is like an addiction. Needing that "fix" of reassurance to calm our minds. I wonder if instead of having to go to the ER, she could call an online nursing line or one of those online doctor forums that charge a small fee each month. I have a friend with health OCD that uses doctorondemand.com/ and there is a fee, but it's gotta be cheaper than er visits and it may help with her being able to keep her dignity some (not saying she loses it, but sometimes I do things that make me feel embarrassed by some of my ocd actions - she may not). Maybe being able to go to that website and quench that need to make sure she is ok until she gets some help from a true professional in erp for health ocd. I want you to give her this message for me if you don't mind: Lynn - my name is Shelley - and I know that we don't know eachother but I care about you. OCD sucks! And I know you are going through torment right now. I have been there so many times. People like us are fighters! We know what's it's like to be in the trenches and we know what it's like to persevere. Your life matters and you are so blessed to have such a supportive family and a dad who is fighting this battle with you! This WILL get better. Even an old blind squirrel finds a nut every now and then. haha. You can do this. Hang in there. Persevere. I am praying for you Lynn and will continue to pray for you every night. You are NOT alone! I see you and I hear you and your struggles are very valid and OCD is a sneaky beast and I am so sorry that you are enduring this. I do truly believe you/we will find our solution sooner rather than later. I journal - ALOT. I buy the prettiest journal I can find on Amazon and I write all the time. It does not take OCD away, but I have found that writing the truth, even when I am beliveing the lies, helps me more than medication. Just a thought. I also gave up sugar and gluten which are huge contributors to anxiety. The jury is still out on the effectiveness of that. I wish you peace. Praying - Shelley
Thanks. I agree that she and we probably need to have better therapy support in place before she can fight against seeking reassurance; an effective dose of the right medication would (will?) also make it easier We are at least in a pretty good place financially, so the bills we have had so far have been unpleasant but not ruinous . Our health insurance also has catastrophic maxima, and between an IOP Lynn started just before she was hospitalized, her hospitalization copay, her residential copay, and all the ER visits, we have reached her individual maximum, so we should not have to pay more for COVERED services for her this year. I know we are more fortunate than most with this part of the picture and am grateful for that .
Oh that does make sense. I didn’t think of that. Do they just send her home from the er each time telling her it’s anxiety? I haven’t heard of the Inosotol that the other person suggested. I plan on googling that myself!
My inclination is to wait and get her the ERP. It sucks, I know, having to wait, while she suffers. And the whole family suffers along with her.
I have no experience of Prozac, but I am on sertraline at a very high dose. High doses are often needed for OCD, as one of your other respondents has pointed out, and I am on 300 mg a day. I also take a supplement of 5 mg a day of aripiprazole, which is an anti-psychotic. I'm not psychotic, but low doses boost the effects of the sertraline.
I have gained weight, which may or may not be down to the aripiprazole - part of it at least occurred during lockdown for Coronavirus, where I put on about 15 pounds. If she is offered aripiprazole, consider the possibility of weight gain, particularly if she already has a weight problem.
I do think continuity of care is important, and continuing the Prozac trial is the best option for now. I spent four months in a residential hospital ward that treated only OCD and BDD and found it really helpful. It involved one-to-one sessions with my assigned therapist, who was very good, and group sessions. If she can get onto something similar, it could well help.
I'm afraid that it's a question of waiting, and this is going to be hard all round. To have OCD is to be in thrall to a condition that doesn't easily respond to rational thought - the panic mechanism of the brain overwhelms the rational, thoughtful side of the brain. It's a bit like a faulty car alarm or house alarm, that goes off constantly for no good reason. It might be worth reading Joseph LeDoux's book The Emotional Brain, which is scientific but very readable and gives a lucid account of it aimed at the general reader.
Another book that might help both you and her is The OCD Workbook, a practical CBT-based guide to OCD and how to treat it - there is also a substantial chapter aimed at family and friends of someone with OCD. Of course the natural response is to reassure and rationalize, and it's hard not to. But as you've found out, it can be ineffective.
If the Prozac doesn't work out, you could try something called Inositol. I've suggested this before on this forum, though I haven't tried it myself. It's a natural substance that is found in the body anyway, but high doses - 18 grams a day - that's grams, not milligrams - have been found to be effective in really difficult-to-treat cases of OCD. It isn't at present used as a front-line treatment, but studies have been promising. It's safe to take, can be bought over the counter at some health food stores and drugstores, and side effects are few and manageable. I can give some links to articles about it, if you're interested - or just google it yourself.
I really feel for your daughter - I know how it is to be incapable of concentrating on things. I know how it is to lie almost inert on the sofa. But it does get better, and your daughter can start living properly again.
I've been taking 1mg a day on advice from my psychiatrist and it seems to help a bit. I am also on Effexor but I found that taking it made me calmer. I also found that reducing my overall carb intake (and reducing process carbs) helped a lot too; that was a bit of a surprise to me.
By all means reduce your intake of processed carbohydrates - things like cake, biscuits, white bread, sugary foods etc - but don't cut them out too much. Keep the whole carbohydrates in - try substituting white rice with brown, eating a rye mix bread, cook potatoes with their skins on - and eat the skins.
The 'keto' diet - high in protein, low in carbohydrates - has gained popularity with many who want to lose weight. But it can be dangerous. The Harvard Medical School's online newsletters point out that it can be very harmful to your heart, and don't recommend it.
Eat carbohydrates of the unrefined, unprocessed type, along with plenty of fruit and veg. Don't be put off fruit because it can be high in sugar - but eat the whole fruit, don't drink it as juice or juice it.
I know for me the first couple of weeks of medicine caused an intense spike in my OCD symptoms. They started to subside at about the 2 week mark. I'm wondering if she could be having a similar response? When the meds started working for me it was life changing. I couldn't believe I could actually "ignore" the thoughts a bit and broke down because of it.
I know what your daughter is going through and I feel for her. OCD is truly terrible. The good news is that there is hope and people with OCD can and do lead happy productive lives. I really hope she finds the peace she deserves. God bless both of you.
She did make it most of the way back to "normal" after suffering from intense OCD (manifested by hour long "hand washing" that extended up to her shoulders) at ages 8 and 9, and did not have serious symptoms again until age 22, so we are at least cautiously hopeful that she can again make a good recovery in the medium to long run. But we are also going to need better short term treatment. (I am thinking she may need to be on higher doses of Klonopin for a while to keep her anxiety at a tolerable level, but that is just a guess about what the doctor might recommend.)
I am so, so sorry for your family and what you are going through. I am almost 70 and have OCD off and on since age 15. That was 1970 and no one knew what was wrong with me. It seems life events cause me to relapse. I had been on 150 mg of Zoloft and had gotten done to 50 with my doctors help when I had this most relapse. Now I am back up to 150, but medication without ERP only solves part of the problem. Your daughter is very lucky to have a wonderful supportive family. I hope your daughter finds some relief soon.
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