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Can't find help for ocd.

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I am a 27 yr old female who was recently diagnosed with PANS. I also have the diagnoses of: M.E./CFS, IC, POTS, complex regional pain syndrome, GAD + treatment resistant depression, excessive daytime sleepiness + non-restorative sleep.

 

 

The ocd came on suddenly in 2010 when I was around 23 or 24. It's always been magical thinking surrounding the issues with my bladder and sleep - which are both very extreme.

 

 

I've been in therapy for 5 years and tried MANY medications. I am currently on: klonopin, xanax, zyprexa, bystolic, and zoloft. I have tried MAOI's, anaphranil, and other ssri's and atypical anti-psychotics. I CANNOT stop the thoughts. It is 24/7 and it keeps me from resting and sleeping - both of which I need as badly fatigued as I am. The medications make me even more fatigued and sedated.

 

I wish to be free of this ocd but don't know what to do though I have a good neuro (he is my first neuro ever) and my psych. is more than willing to work with him. I have extreme sensitives to medication along with bizarre paradoxical reactions to them.

 

I am also on valtrex right now for positive coxsackie A and B. Next step will be genetic testing and then hopefully IVIG. I don't know what else to do. My family (excluding my mother and brother) think I am lazy and malingering but all my life I was hard working and overachieving until I became completely bedridden in 2009. I mostly feel like my brain is rotting b/c of how fatigued I am and even though I am so sleepy, I cannot just lie down and fall asleep. OCD becomes its worst when I try to rest or sleep.

 

 

I merely just wish to connect with other patients and learn as I haven't met any other CFS patients with these problems. It seems foreign to most of my online friends.

 

Thanks,

Chris

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I'm so sorry you're going through this, and especially sorry that not all your family is especially supportive. This PANDAS/PANs stuff is a dichotomy. At its heart, it's really pretty simple: autoimmune and inflammation, resulting in all sorts of havoc. But when it comes to finding lasting, effective treatment, the nuances there and variances in response from person to person tend to exhaust and/or frustrate the "believers" and validate the "non-believers."

 

Your sensitivity to medications and paradoxical responses to some of them is, in our experience, part and parcel of the PANDAS/PANs condition. Our first psych kept throwing various medications at our DS, and increasing dosages, and couldn't wrap his brain around why DS just got more crazed, rather than less. That was before we discovered PANDAS and found someone who would actually treat it. Then we began stripping away a lot of the "add-on" meds like klonopin, Seroquel, zyprexa, etc., adding antibiotics, and DS began to improve. In our experience, while a low-dose SSRI and glutamate modulating support (via lamictal) is very helpful, all the other stuff -- especially the anti-psychotics -- were just making things worse, rather than better.

 

Also in our experience, the "magical thinking" or "thought OCD" can be the hardest to eradicate; it's just so tenacious and invasive. When you say you've been in therapy, is it ERP (exposure response prevention), rather than just talk therapy? If not, I would seek out an ERP therapist; ERP exercises and consistent homework practice should help alleviate some of this OCD.

 

When it comes to your sleep problems, I wonder if you've tried anything like either melatonin or valerian root? I'm not sure how either of those would interract with your other medications, but perhaps it's something to bring up with your doctor, at least. We've found both of these helpful in quieting the mind and readying it for sleep, and then helping the sleep to be restful and restorative. I frequently come back to our first pediatrician's mantra: "A tired child is a wired child," i.e., sometimes when you're really exhausted, it makes it that much harder to sleep. So maybe between your racing mind and your medical challenges, you're just a little too "wired" to rest? That's where I think Valerian root and/or melatonin might be of some help.

 

And finally, I'm wondering if you or your family members have read "Brain on Fire" by Susannah Calhanan. It is an autobiographical account of a young (25-ish, I think) woman who went from "top of her game" one day to a completely non-functional wreck the next due to autoimmune disease. She, too, was bedridden for some time, even after a doctor at NYU finally diagnosed her and began a treatment plan, and her long road to recovery almost sounds a little like a stroke victim's . . . relearning all sorts of things, regaining her short-term and long-term memory, language skills, etc. I think the book might be helpful (and hopeful) to you and your family . . . show them that there is some "shared experience" and that you are neither lazy nor crazy.

 

Hang in there! You are NOT alone!

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I'm so sorry you're going through this, and especially sorry that not all your family is especially supportive. This PANDAS/PANs stuff is a dichotomy. At its heart, it's really pretty simple: autoimmune and inflammation, resulting in all sorts of havoc. But when it comes to finding lasting, effective treatment, the nuances there and variances in response from person to person tend to exhaust and/or frustrate the "believers" and validate the "non-believers."

 

Your sensitivity to medications and paradoxical responses to some of them is, in our experience, part and parcel of the PANDAS/PANs condition. Our first psych kept throwing various medications at our DS, and increasing dosages, and couldn't wrap his brain around why DS just got more crazed, rather than less. That was before we discovered PANDAS and found someone who would actually treat it. Then we began stripping away a lot of the "add-on" meds like klonopin, Seroquel, zyprexa, etc., adding antibiotics, and DS began to improve. In our experience, while a low-dose SSRI and glutamate modulating support (via lamictal) is very helpful, all the other stuff -- especially the anti-psychotics -- were just making things worse, rather than better.

 

Also in our experience, the "magical thinking" or "thought OCD" can be the hardest to eradicate; it's just so tenacious and invasive. When you say you've been in therapy, is it ERP (exposure response prevention), rather than just talk therapy? If not, I would seek out an ERP therapist; ERP exercises and consistent homework practice should help alleviate some of this OCD.

 

When it comes to your sleep problems, I wonder if you've tried anything like either melatonin or valerian root? I'm not sure how either of those would interract with your other medications, but perhaps it's something to bring up with your doctor, at least. We've found both of these helpful in quieting the mind and readying it for sleep, and then helping the sleep to be restful and restorative. I frequently come back to our first pediatrician's mantra: "A tired child is a wired child," i.e., sometimes when you're really exhausted, it makes it that much harder to sleep. So maybe between your racing mind and your medical challenges, you're just a little too "wired" to rest? That's where I think Valerian root and/or melatonin might be of some help.

 

And finally, I'm wondering if you or your family members have read "Brain on Fire" by Susannah Calhanan. It is an autobiographical account of a young (25-ish, I think) woman who went from "top of her game" one day to a completely non-functional wreck the next due to autoimmune disease. She, too, was bedridden for some time, even after a doctor at NYU finally diagnosed her and began a treatment plan, and her long road to recovery almost sounds a little like a stroke victim's . . . relearning all sorts of things, regaining her short-term and long-term memory, language skills, etc. I think the book might be helpful (and hopeful) to you and your family . . . show them that there is some "shared experience" and that you are neither lazy nor crazy.

 

Hang in there! You are NOT alone!

WOW amazing response! This is very helpful. My mom actually heard about the book in reader's digest, and I felt fascinatingly connected to it, so I think it's high time we buy a copy.

 

I do take melatonin every night and it is helpful but more so for my sleep wake cycle. I also think that taking all the downers is not good - specifically the zyprexa. And yes, for 10 years I've been trying psych. med after psych med with little to no benefit. I will have to ask about valerian root - I got serotonin syndrome when added st. john's yikes! I have really bad dysautonomia too and that causes me a lot of chronic tachycardia - I think if I could retain fluid that would help a lot but I've gotten too many side effects from florinef. I am seeing Dr. T. currently and I really like him.

 

It's sounding like I'll have to try antibiotics again in the future, the c-diff was just so terrible. How long before your son saw improvement? I was on them for 8 months without any improvement.

 

Klonopin is actually really helpful for me, especially for over censory crashes - it is great for that and doesn't drug me so much next day. Zoloft hasn't helped anything.

 

 

 

Have you gone through any CBT/ERP or tried IVIG?

Yes I've done the CBT and ERP but my ocd switches. So once we worked on "one" thing it just switches to another thing, and then I have to start all over with that. I feel completely helpless against it b/c the CBT doesn't work at all, I just battle the thoughts all day.

 

HAVE NOT done IVIG - but it has helped my aunt and best friend so I am highly interested. Dr. T said it would be step 3. Has ivig helped you?

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" while a low-dose SSRI and glutamate modulating support (via lamictal) is very helpful" - Why is lamictal helpful? My psych. has mentioned it before and I'm going to see him this week. I would like to get off of zyprexa.

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It's sounding like I'll have to try antibiotics again in the future, the c-diff was just so terrible. How long before your son saw improvement? I was on them for 8 months without any improvement.

 

 

My DS was is a horrible place when we first tried abx; he had been curled up in the fetal position on the floor of his room, unable to do anything for himself, for over a month. Maybe because he was SO sick, and/or maybe because we had a major stroke of luck and found the right drug for him on our first try, within 48 hours (4 doses) of Augmentin XR, the change was palpable. He was far from "well" or even "functional," but he actually came out of his room and sat down at the dinner table with his dad and me for a meal for the first time in 3 months. It was just the beginning of his climb out of the abyss, and we have had a number of plateaus and even regressions over the 3.5 years since, but I hate to think where he would be today if not for the antibiotics.

 

Regarding the c-diff, I'm sure that was horrendous and revisiting that isn't something you want to do. And you also say you've been taking probiotics. I wonder, though, if there aren't some strains of probiotics that might provide better protection against c-diff than others? And whether or not you might need to both refine the strain(s) you take and/or take higher doses, and perhaps that would be enough? When my DS was on antibiotics, we wound up giving him about 200 billion units of probiotics daily -- a mix of many strains -- and he was spared any c-diff or yeast issues. I know it doesn't work for everyone, and given our biology, I would think women might have more of a challenge than men in this regard. But perhaps it's something you could discuss with a knowledgeable doctor or naturopath.

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" while a low-dose SSRI and glutamate modulating support (via lamictal) is very helpful" - Why is lamictal helpful? My psych. has mentioned it before and I'm going to see him this week. I would like to get off of zyprexa.

 

DS's reaction to lamictal represents another turning point (a positive one) in his health and functionality. Lamictal is an anti-seizure med that supposedly works by reducing the level of excess glutamate in the brain. While it hasn't actually reduced the OCD in DS, what it has done is made him less "married to" his OCD thoughts . . . less emotional about them and defensive of them. It's increased his ability to be more objective about some of the obsessive thoughts and compulsions that used to plague him, and thus to let go of them more easily. And it's helped him with this without zonking him out, making him listless or tired, or dulling his personality or his wit. It just seems to help his executive functioning to work more efficiently and consistently.

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Yes I've done the CBT and ERP but my ocd switches. So once we worked on "one" thing it just switches to another thing, and then I have to start all over with that. I feel completely helpless against it b/c the CBT doesn't work at all, I just battle the thoughts all day.

 

 

We've been contending with OCD for nearly a decade now, and we've come to refer to it as The Great Shape-Shifter <_< . Yes, as soon as you find a therapeutic response to one issue, it moves on to something else, always seeking a toehold to keep you under its control so that you don't "forget about it," like some sort of sadistic, spoiled brat! From the stories I've heard from other families, it's just in the nature of OCD to switch its focus; I actually heard a young boy on public radio one time talking about his OCD and describing it as a never-ending game of "Whack-A-Mole."

 

But I do think that good . . . and I mean "good" . . . ERP techniques can help with all forms of OCD; it's just that you do have to keep adapting the exercises, the exposures, to address current issues. Like a lot of other families here, we've experienced lame ERP, "okay" ERP and good, effective ERP, and I think the really good ERP therapists are tough to find.

 

Plus, you need the support of friends and family around you to sort of "hold your feet to the fire" . . . sort of like the tough love your support network can give you when you're trying to commit to a new diet or exercise regimen . . . and hold you accountable for practicing the ERP at home as well as in the therapist's office, even in the heat of the battle with the OCD. In my experience, when the person with OCD is also feeling quite ill, we tend to cut them more slack because of our level of sympathy and concern for their overall health and distress, but unfortunately that can backfire if the person indulges the OCD and continues with the behaviors because they're not feeling strong enough on their own to push back, and we as their loved ones are turning a blind eye out of kindness. -_-

 

Fighting OCD is one massive Jedi Mind Trick! :P

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Yes I've done the CBT and ERP but my ocd switches. So once we worked on "one" thing it just switches to another thing, and then I have to start all over with that. I feel completely helpless against it b/c the CBT doesn't work at all, I just battle the thoughts all day.

 

 

We've been contending with OCD for nearly a decade now, and we've come to refer to it as The Great Shape-Shifter <_< . Yes, as soon as you find a therapeutic response to one issue, it moves on to something else, always seeking a toehold to keep you under its control so that you don't "forget about it," like some sort of sadistic, spoiled brat! From the stories I've heard from other families, it's just in the nature of OCD to switch its focus; I actually heard a young boy on public radio one time talking about his OCD and describing it as a never-ending game of "Whack-A-Mole."

 

But I do think that good . . . and I mean "good" . . . ERP techniques can help with all forms of OCD; it's just that you do have to keep adapting the exercises, the exposures, to address current issues. Like a lot of other families here, we've experienced lame ERP, "okay" ERP and good, effective ERP, and I think the really good ERP therapists are tough to find.

 

Plus, you need the support of friends and family around you to sort of "hold your feet to the fire" . . . sort of like the tough love your support network can give you when you're trying to commit to a new diet or exercise regimen . . . and hold you accountable for practicing the ERP at home as well as in the therapist's office, even in the heat of the battle with the OCD. In my experience, when the person with OCD is also feeling quite ill, we tend to cut them more slack because of our level of sympathy and concern for their overall health and distress, but unfortunately that can backfire if the person indulges the OCD and continues with the behaviors because they're not feeling strong enough on their own to push back, and we as their loved ones are turning a blind eye out of kindness. -_-

 

Fighting OCD is one massive Jedi Mind Trick! :P

Has anything helped with his sleep?

The problem is I'm awake all night battling it and I already take a pile of downers. Just wondering if some ssri's were better or if it just depends on the patient. Zoloft has not helped at all in a year of taking it, bad side effects from prozac and anaphranil, and luvox actually makes my heart race. Remeron stimulates me yet makes me tired............. It'd be nice to get some sore of medicinal relief so I could at least sleep. Not sleeping keeps the viscious cycle going. Thanks for all your responses, it's refreshing to finally find other folks dealing with the same stuff. I've found that my ocd gets much worse when I'm trying to rest or sleep, but since I have severe M.E./CFS, that's really all I can do is lie in bed, I'm THAT fatigued. I cannot exercise and small things like showers send me to bed because of severe post exertional malaise. Anyways, thanks.

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Has anything helped with his sleep?

 

The problem is I'm awake all night battling it and I already take a pile of downers. Just wondering if some ssri's were better or if it just depends on the patient. Zoloft has not helped at all in a year of taking it, bad side effects from prozac and anaphranil, and luvox actually makes my heart race. Remeron stimulates me yet makes me tired............. It'd be nice to get some sore of medicinal relief so I could at least sleep. Not sleeping keeps the viscious cycle going. Thanks for all your responses, it's refreshing to finally find other folks dealing with the same stuff. I've found that my ocd gets much worse when I'm trying to rest or sleep, but since I have severe M.E./CFS, that's really all I can do is lie in bed, I'm THAT fatigued. I cannot exercise and small things like showers send me to bed because of severe post exertional malaise. Anyways, thanks.

 

Some of what you tell me about your reaction to the SSRIs and other drugs, combined with the sleeplessness, makes me wonder if maybe the real problem with the SSRIs is that you're being given them in too high doses? My understanding is that SSRI doses have no relation to age or weight, and many of us here in the PANDAS/PANs community have found that our kids respond well to doses so low that your average psych doesn't believe it, and get activated by what the psych considers an "average" dose or even a "low" dose. There's actually a paper on this topic authored by Dr. Tanya Murphy and the team at USF; you can probably find it on-line or, if not, I can share a copy.

 

Our DS takes melatonin 1 hour before lights out, and that seems to do the trick in terms of falling asleep, and then he generally stays asleep until the alarm the next morning.

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Has anything helped with his sleep?

 

The problem is I'm awake all night battling it and I already take a pile of downers. Just wondering if some ssri's were better or if it just depends on the patient. Zoloft has not helped at all in a year of taking it, bad side effects from prozac and anaphranil, and luvox actually makes my heart race. Remeron stimulates me yet makes me tired............. It'd be nice to get some sore of medicinal relief so I could at least sleep. Not sleeping keeps the viscious cycle going. Thanks for all your responses, it's refreshing to finally find other folks dealing with the same stuff. I've found that my ocd gets much worse when I'm trying to rest or sleep, but since I have severe M.E./CFS, that's really all I can do is lie in bed, I'm THAT fatigued. I cannot exercise and small things like showers send me to bed because of severe post exertional malaise. Anyways, thanks.

 

Some of what you tell me about your reaction to the SSRIs and other drugs, combined with the sleeplessness, makes me wonder if maybe the real problem with the SSRIs is that you're being given them in too high doses? My understanding is that SSRI doses have no relation to age or weight, and many of us here in the PANDAS/PANs community have found that our kids respond well to doses so low that your average psych doesn't believe it, and get activated by what the psych considers an "average" dose or even a "low" dose. There's actually a paper on this topic authored by Dr. Tanya Murphy and the team at USF; you can probably find it on-line or, if not, I can share a copy.

 

Our DS takes melatonin 1 hour before lights out, and that seems to do the trick in terms of falling asleep, and then he generally stays asleep until the alarm the next morning.

Ah I'm on tiny dose of zoloft and took 8 months to get up to 25 mg. I've been taking melatonin for years.

 

I guess the problems could lie in the M.E./CFS - as we all have incredible trouble sleeping. Hopefully Dr. T can help - he's investigating it.

 

Thanks for all your responses. :)

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We recently read a book by Shannon Shy titled "It will Be Okay" best book about someone's personal struggle with ocd and journey to healing over ocd. I highly recommend it.

 

posting facebook link below

Edited by Kathy N

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599225_428444690551190_1313585790_n.jpg

Shannon Shy - OCD Can Be Defeated. I'm Living Proof.
351 likes · 75 talking about this

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