What are some additional options for severe anxiety?

[Terabith]

19 minutes ago, gardenmom5 said:

interesting. . .  I was given gabapentin for the pain in a joint likely caused by RA.  (just one obviously swollen and super painful joint. now, it's swollen, but doesn't feel like someone whacked it with a hammer while it was on a rock.)
EBV can cause/trigger RA . . . . joy.

I was first prescribed gabapentin when it was neurontin, about 25 years ago.  At the time, there was a theory that it was a mood stabilizer and they thought I was bipolar.  (Turns out PTSD, depression, and generalized anxiety look a lot like bipolar.). No mood stabilizer had really worked for me, but the day I reached a therapeutic level of neurontin, I was like, “Wait…THIS is what normal feels like?”  
 

Turns out it has no efficacy as a mood stabilizer, but apparently a significant minority of people find it to be a miracle drug anxiety wise.  

[scbusf]

I have no real advice, just hugs. I have a difficult to treat DD. She is 16 and has always struggled with anxiety/OCD likely due to adoption trauma (adopted from China at age 21 months). Once the Covid years hit, she developed depression in addition. She was diagnosed with Autism when she was 15 after years of everyone saying no way on ASD. She thinks everything is fine, and doesn’t want to do therapy or anything. She is taking sertraline and doing Ok on it. 

[Shelydon]

1 hour ago, PeterPan said:

We talk about the Zones of Regulation, but the idea is the person is probably getting clues BEFORE this happens. That panic attack and melt down is red zone, game over, complete loss of regulation. But she was in yellow zone before that (where odds are she lives a lot of the time) and didn't get WARNING before her body went red zone.

So interoception work helps them catch into their body clues, the signals, so they can get more regulated. It took a lot of interoception work for my ds to realize what he needed to do to be GREEN zone. Once he was green zone and knew how to be there, he could then feel when we was going YELLOW zone and head off the RED zone. But your dd's body is going there, taking her along for the ride like some kind of tsunami. You need the process that slows that down, and it's her self awareness of what makes her feel good.

I'd probably start with the OT eval. You may need two OTs and I would open yourself up to that. You can go on the interoception FB group and get someone to do telehealth for the interoception work. You can get a local OT for the retained reflexes because that will be easier to find. You can do them concurrently. It takes about 40 days straight of work to integrate retained reflexes and that two months is about what it will take to get through the jist of the interoception curriculum.

Thank you for the thorough explanation. I am searching to see what I can find in my area. I've not heard of this before

[PeterPan]

Just now, Shelydon said:

Thank you for the thorough explanation. I am searching to see what I can find in my area. I've not heard of this before

Zones of Regulation is typically done by OTs and it's language based. If they talk at her and it's not clicking, then the precursor work on interoception (Kelly Mahler) fills that gap. 

[PeterPan]

Doing the body scans for interoception, as hokey is it sounds, is evidence based from bumping EF, self regulation, etc. It's something we can all *improve* at and she can work on it each day (something the OT can teach her to do) and maybe feel more calm, more regulated, more in control.

Btw, Kelly Mahler developed a teen/adult workbook that might be a good fit for her.

I'm saying all this and it's certainly an important piece, self awareness. However sometimes the chemistry has to be calmed down to allow her to be able to USE the good tools. So the ideas are going to run in parallel (balance the chemistry, work on self awareness, deal with underlying physical issues, etc.). It's all the stuff you've been trying to do, sigh. Still there has to be a missing piece.

Edited June 11 by PeterPan

[Shelydon]

41 minutes ago, Terabith said:

I was first prescribed gabapentin when it was neurontin, about 25 years ago.  At the time, there was a theory that it was a mood stabilizer and they thought I was bipolar.  (Turns out PTSD, depression, and generalized anxiety look a lot like bipolar.). No mood stabilizer had really worked for me, but the day I reached a therapeutic level of neurontin, I was like, “Wait…THIS is what normal feels like?”  
 

Turns out it has no efficacy as a mood stabilizer, but apparently a significant minority of people find it to be a miracle drug anxiety wise.  

Wow! I've never heard of that. I have taken gabapentin after surgery, and whoa! that stuff knocked me out. 

[PeterPan]

If you didn't think there was a missing piece, I don't think you'd be trying this hard to find it. 

I've had some dark times like that, where you just pray over piles of data and pray for answers, sigh.

[PeterPan]

Just now, Shelydon said:

whoa! that stuff knocked me out. 

How has she been sleeping? 

[gardenmom5]

39 minutes ago, scbusf said:

I have no real advice, just hugs. I have a difficult to treat DD. She is 16 and has always struggled with anxiety/OCD likely due to adoption trauma (adopted from China at age 21 months). Once the Covid years hit, she developed depression in addition. She was diagnosed with Autism when she was 15 after years of everyone saying no way on ASD. She thinks everything is fine, and doesn’t want to do therapy or anything. She is taking sertraline and doing Ok on it. 

will she do yoga?  or a martial art?  (Aikido is relatively calm, it's working well for dudeling) 
they both can help to integrate the nervous system, so it's not overt - but very helpful for those on the spectrum, and for anxiety.

horse back riding, swimming, . . . all beneficial.

things that will require coordination of left arm/right leg and right arm/left leg.  It's the way it affects the brain.

Even piano - in our day and age of many many online piano teaching apps.  each finger is working and both sides of the brain.

Edited June 11 by gardenmom5

[Shelydon]

4 minutes ago, PeterPan said:

How has she been sleeping? 

Generally, she sleeps ok. If she's anticipating something that may cause separation, then she won't sleep at all. 

[Shelydon]

1 minute ago, gardenmom5 said:

will she do yoga?  or a martial art?  (Aikido is relatively calm, it's working well for dudeling) 
they both can help to integrate the nervous system, so it's not overt - but very helpful for those on the spectrum, and for anxiety.

horse back riding, swimming, . . . all beneficial.

things that will require coordination of left arm/right leg and right arm/left leg.  It's the way it affects the brain.

She does yoga and rides when she gets the chance..

[Shelydon]

15 minutes ago, PeterPan said:

Zones of Regulation is typically done by OTs and it's language based. If they talk at her and it's not clicking, then the precursor work on interoception (Kelly Mahler) fills that gap. 

She will usually tell me, I know that I'm supposed to stop the thought, but I do not understand how you're actually supposed to *do* that. And honestly, I don't have anything for her. I am not successful in stopping a thought, I just don't react to it if it's problematic. 

[PeterPan]

1 minute ago, Shelydon said:

yoga

I often go to yoga classes when I travel, but seldom have they been worth two cents for actually realizing how to feel better. One time the instructor was from India and *very* into it. He knew how to explain it and lead you into it and THAT was wild and very helpful. That I use all the time now. 

I think you have to put all these things in perspective. We're not talking all equal options. They're all good, but some are going to make up a larger % of the stability and some are going to be the final 10-15%. For us zinc is 10-15%, a piece. It's a piece that is noticeable and allows us to keep meds low, but it's not like it's the whole thing. Meds are maybe 60%. Self awareness with self advocacy (knowing how you feel and what your body is doing and what you choose to do) is 30%. 

I guess I just keep reading everything you've written trying to figure out where the breakdown is. The meds? The self awareness? Access to tools? You've done so much, sigh. That's when I would go back to recheck assumptions. Check the assumption that nothing would show in the genetics. Check the assumption on the dsm diagnosis. Check the assumptions on blood labs for d, thyroid, etc. Check the assumptions on long covid and see if anything she's doing contradicts lists used for long covid or could be making it worse, etc.

It's hard.

[PeterPan]

4 minutes ago, Shelydon said:

She will usually tell me, I know that I'm supposed to stop the thought, but I do not understand how you're actually supposed to *do* that. And honestly, I don't have anything for her. I am not successful in stopping a thought, I just don't react to it if it's problematic. 

It will be interesting to hear how it goes if you track down some OTs. I wasn't joking on suggesting you look for two. I think you'll get better results. One in person to check for retained reflexes, another via tele who is exceptional with young adults with these challenges (find on the fb group). 

I think that would be very hard to feel in control of your thoughts if you don't feel in control of your body. The interoceptive awareness is in a part of the brain and the MRI studies are showing that working on it ACTIVATES that portion of the brain, making it stronger. So in a sense, you don't have to work on EXACTLY the problem or EXACTLY what needs to happen. You just work on the self awareness and that part of the brain steps up, growing, making new wiring, activating more, which improves HER ability to solve HER problem. That's what the MRI data is showing. 

 

[PeterPan]

8 minutes ago, Shelydon said:

stop the thought,

Mind racing is typical of elevated dopamine which is connected to COMT issues. I keep saying to recheck the genetics. If you do and find these issues, there are some targeted things you can do. Just depends on what you find there.

Even just a heterozygous defect, when paired with the methyls in the SSRI and the buspirone and maybe a couple other slight issues elsewhere could add up. It's why she could seem fine and then go off the rails as the demands increased. 

[KSera]

14 minutes ago, Shelydon said:

She will usually tell me, I know that I'm supposed to stop the thought, but I do not understand how you're actually supposed to *do* that. And honestly, I don't have anything for her. I am not successful in stopping a thought, I just don't react to it if it's problematic. 

Is that the instruction from therapy, that you should stop whatever thought is sending her into a panic? If that’s the case, I agree with you that stopping a thought is difficult, much less stopping someone else’s thought. It’s the whole “don’t think about pink elephants” thing and I don’t see how that would be supposed to work. This leads me back to the Claire Weekes recommendation. Her recommendation would be just the opposite, of not fighting things. Fighting thoughts and feelings is putting her into a constant fight or flight response which just keeps feeding back into a feedback loop, ramping the panic up more and more. It’s totally chemical and makes perfect that it’s happening that way. I don’t think it even necessarily* means that you’ve missed something thing, it’s just that panic is a beast. Fortunately, much of a beast as it is, it’s also one of the most highly treatable psychiatric disorders. She really can get ahold of this. 

*it still could be that there is a brain inflammation component or that autism has been missed due to “bright female” presentation (that happened here), just saying it also may not be anything but purely a panic disorder. And then more generalized anxiety having set in due to constant fear of panic. 
 

On a wildly different note, what do you think about pursuing the idea of a purpose trained service dog for anxiety? (Not just an emotional support animal.) Could be something that allowed her independence. Getting one is far from trivial, so I’m not making it sound like an easy fix, but it’s a thing and if for some reason nothing else was helping, could be a workaround that could allow college and everything else she would want. 

[PeterPan]

Has she tried going anything with weights? Weighted blanket, wearing ankle weights around the house, lifting weights, etc... Heavy work is very calming to the nervous system. It can also be small scale, heavy work with her hands like black theraputty. 

[Pawz4me]

5 minutes ago, KSera said:

This leads me back to the Claire Weekes recommendation. Her recommendation would be just the opposite, of not fighting things. Fighting thoughts and feelings is putting her into a constant fight or flight response which just keeps feeding back into a feedback loop, ramping the panic up more and more. It’s totally chemical and makes perfect that it’s happening that way.college and everything else she would want. 

"What you resist will not only persist, but grow in size" -- Carl Jung

 

[pinball]

@Shelydon

hypnosis?

[PeterPan]

7 minutes ago, KSera said:

a purpose trained service dog for anxiety?

Yup. Or a dog that isn't trained but is known for being incredibly attached. They'll call them velcro dogs. My dd uses a dog this way. I would lean cat if dogs don't make sense to her or don't click for her. Actually it could be a chicken for that matter, but a cat or dog would be easier to travel with. But yeah, chickens happen. If there's nothing (besides Mom) she's attached to, I'd definitely be looking for that option. I definitely plan to have a dog for my ds when he goes. I'm thinking he'll ship closer to 20-21, so I have a couple years yet before we get that animal.

Ok, for another thought, not like you need more. In the vein of normalizing, one thing I've done is to find examples of people who had that challenge/facet. So when he couldn't read, I told him about Branson (Virgin). With the autism I took him to meet someone with the diagnosis and told him I was taking him to meet someone brilliant. Interestingly, there have been some *very famous* people with debilitating anxiety!! The most interesting, if you're religious, is David Brainerd. You read his diaries, and oh my that was a man afflicted!! And sometimes he felt well enough to do amazing things and sometimes he didn't. 

I think it's also ok to tell them true things: Your brain is changing a lot, this is a time of neurological instability, be patient with yourself. 

[PeterPan]

2 minutes ago, pinball said:

@Shelydon

hypnosis?

There's this really great episode of Young Dracula where they explore whether they WOULD change themselves (from being vampires) if they could. 

I mention this series all the time and no one seems to BITE on it. 🤣

[freesia]

21 minutes ago, KSera said:

Is that the instruction from therapy, that you should stop whatever thought is sending her into a panic? If that’s the case, I agree with you that stopping a thought is difficult, much less stopping someone else’s thought. It’s the whole “don’t think about pink elephants” thing and I don’t see how that would be supposed to work. This leads me back to the Claire Weekes recommendation. Her recommendation would be just the opposite, of not fighting things. Fighting thoughts and feelings is putting her into a constant fight or flight response which just keeps feeding back into a feedback loop, ramping the panic up more and more. It’s totally chemical and makes perfect that it’s happening that way. I don’t think it even necessarily* means that you’ve missed something thing, it’s just that panic is a beast. Fortunately, much of a beast as it is, it’s also one of the most highly treatable psychiatric disorders. She really can get ahold of this. 

*it still could be that there is a brain inflammation component or that autism has been missed due to “bright female” presentation (that happened here), just saying it also may not be anything but purely a panic disorder. And then more generalized anxiety having set in due to constant fear of panic. 
 

On a wildly different note, what do you think about pursuing the idea of a purpose trained service dog for anxiety? (Not just an emotional support animal.) Could be something that allowed her independence. Getting one is far from trivial, so I’m not making it sound like an easy fix, but it’s a thing and if for some reason nothing else was helping, could be a workaround that could allow college and everything else she would want. 

A service dog is a wonderful idea!

[Toocrazy!!]

I don't have the medical expertise or ideas that these posters have provided, and I hope that something they have said will help. I have suffered from anxiety and panic attacks and they are awful. I hope your DD can find some solutions.

A couple things stood out to me - it might not be covid virus related, but could the attachment be covid trauma related? It was such a scary time and everything kind of got thrown into turmoil. I'm sure you as parents were a great comfort and a safety net in scary times, and maybe that connection is still there somehow. Another issue could be hormones and puberty. It sounds like she was around 14? Perimenopause threw me into it. I went from the most laid back person to refusing to leave my house some days. I can imagine the hormonal changes in puberty would be similar.

That said, what worked for me best was hard exercise. Running, hard, hard enough to wear myself out, work up a sweat, and using up all the extra adrenaline that was coursing through me in my constant state of fight or flight, was the only thing that helped me tamp down the feeling of being constantly on edge. Before I could run a lot, I would run as far as I could, then walk, then run again for as long as I needed to to pretty much exhaust myself. At the beginning it was several hours of this until I felt better. I gave up all caffeine as well. One of my drs explained to me the physical reasons of the fight or flight feeling, and this just made sense to me as a way to feel better. It's like you have to break the cycle or it just keeps building on itself. 

 

[SanDiegoMom]

My adhd daughter was prescribed Ativan for panic attacks when she was 19.  She uses it VERY occasionally, probably like 6-8 times a year, and it's a super low dose.  When she's going into a panic attack (and she does sometimes feel like she is but decides to wait it out, other times can be worse) she takes an Ativan and it works immediately.  She does get a little sleepy, but mostly it just ends the panic.  

Yes, they can be addictive for the wrong person, so for her- she calls us every time she takes one- even at  age 24, and the prescription is limited. The dose lasts only a few hours, though she's still a little sleepy the next day.  

I hope in time she won't have to take them at all, as I think she can work through the panic attacks and deal with the emotions now that she's a little more grounded and emotionally healthy. But she's 24 and that's her choice at this point.

There are stronger and weaker benzos and Ativan is not nearly as strong as other ones.   

[SanDiegoMom]

And I agree with the PP that hard exercise is super helpful for dealing with anxiety.  Intense cardio, even just short bursts.  

[Kassia]

54 minutes ago, freesia said:

A service dog is a wonderful idea!

I think so too.

 

12 minutes ago, Toocrazy!! said:

 

That said, what worked for me best was hard exercise. Running, hard, hard enough to wear myself out, work up a sweat, and using up all the extra adrenaline that was coursing through me in my constant state of fight or flight, was the only thing that helped me tamp down the feeling of being constantly on edge. 

 

 

6 minutes ago, SanDiegoMom said:

And I agree with the PP that hard exercise is super helpful for dealing with anxiety. 

I was going to suggest exercise too.  I used to be a runner and it helped so much with anxiety.  It also gave me such a feeling of accomplishment and those endorphins helped my overall mood as well.  I can't run anymore due to physical issues, but I still work out hard using my spin bike and weight training and both really help with stress and overall mood.

[KSera]

1 hour ago, PeterPan said:

Yup. Or a dog that isn't trained but is known for being incredibly attached

Only a task trained dog would have public accommodation rights that allowed her to take the dog everywhere she wanted to be, which is why I suggest a service dog specifically rather than the easier route of an emotional support animal. An ESA does not have public access rights. 
 

25 minutes ago, SanDiegoMom said:

Yes, they can be addictive for the wrong person, so for her- she calls us every time she takes one- even at  age 24, and the prescription is limited.

It sounds like they are working well for her, and probably especially so since she has a limited prescription and is disciplined about calling you each time she take one. I just want to add they can be addictive for any person, and one can’t know ahead of time how they will affect them. Regular use is the biggest predictor of addiction to them (because it’s a very physical addiction—if taken daily, they stop being effective at the dose given, yet stopping them causes such strong anxiety spikes that the person can’t stop taking them. It’s an awful one that way.) The limited number of pills and limited use of them is key. 

[BeachGal]

3 hours ago, Shelydon said:

She will usually tell me, I know that I'm supposed to stop the thought, but I do not understand how you're actually supposed to *do* that. And honestly, I don't have anything for her. I am not successful in stopping a thought, I just don't react to it if it's problematic. 

Here are the four steps that Jeffrey Schwartz has his patients use to help stop their OCD. Schwartz is a psychiatrist and researcher at UCLA, iirc, who studies OCD and neuroplasticity.

1. Label the emotion. Labeling manages fear and stress responses. Try to use nuanced vocabulary.

2. Say to yourself: “This is a faulty brain circuit. It is not me.” This separates you from the emotion.

3. Focus on a pleasant image or activity. This creates a new brain circuit that eventually will replace the old one.

4. Revalue and discard the unhealthy emotional response. Mentally toss it away as best as you can.

Type out the four steps above and carry them in a wallet, etc so that you can do these whenever intrusive thoughts appear.

 

If this started around the time Covid appeared, I would suspect she might have had a physical change in her microbiome and/or vagus nerve. If you google microbiome (or vagus nerve) and anxiety, you can find some helpful articles.

Medscape will email newsletters to you on news about particular health issues. You might find that useful. You can sign up for free.

ETA You could also consider testing for insulin resistance. That can play a role in anxiety as well.

Edited June 11 by BeachGal

[Mrs Tiggywinkle Again]

I had severe and extreme anxiety after having Covid the first time, and I was suicidal simply to get rid of the anxiety. I did all the meds with no results. I know it started before she had Covid but I wonder if she could have had asymptomatic Covid?

I tried everything for about a year and a half and finally through a series of coincidences met a distant cousin who does Accelerated Resolution Therapy. It gave me my life back.  It’s not 100% for me but I can function in society.

Edited June 11 by Mrs Tiggywinkle Again

[Lecka]

I have a young adult (now) who is taking another class of medication now.  It’s not really sounding particularly similar.

 

But…. He was having a period where he was very anxious, and I don’t know if he might have had a panic attack.  Another young person offered him a pill of that young person’s rescue medication for anxiety (for panic attacks).  
 

Another time another young person said if he wanted to get illegal prescription medication, he could.  

I don’t know all the details of this, but definitely these were people trying to be helpful to him and seeing him as anxious or distressed.  
 

In the meantime, in my area there are times people think they are taking a prescription medication, but it has fentanyl, and it has effected 2 people in my small church in the past 6 months or so (2 people have attended a funeral for someone who has died this way).  
 

This was not on my radar at all. 

[cjzimmer1]

7 hours ago, Shelydon said:

We have only tried SSRIs. Her psychiatrist is hesitant to move to other things because they are impossible to discontinue once you start them and she is young.  Pandas has been ruled out

Mine is doing better (still in the thick of trying to sort it out but so much better than where we started) with a combination of SSRI and something else.  For us low dose hydroxyzine works so much better for anxiety than anything else we've tried thus far.  Like within 20 minutes of taking it, there is noticeably less anxiety.

[Shelydon]

2 hours ago, cjzimmer1 said:

Mine is doing better (still in the thick of trying to sort it out but so much better than where we started) with a combination of SSRI and something else.  For us low dose hydroxyzine works so much better for anxiety than anything else we've tried thus far.  Like within 20 minutes of taking it, there is noticeably less anxiety.

Thank you, that is something that we have not tried

[Shelydon]

3 hours ago, Mrs Tiggywinkle Again said:

I had severe and extreme anxiety after having Covid the first time, and I was suicidal simply to get rid of the anxiety. I did all the meds with no results. I know it started before she had Covid but I wonder if she could have had asymptomatic Covid?

I tried everything for about a year and a half and finally through a series of coincidences met a distant cousin who does Accelerated Resolution Therapy. It gave me my life back.  It’s not 100% for me but I can function in society.

I haven't heard of this either, definitely will look it up. Thank you!

[KSera]

18 minutes ago, Shelydon said:

Thank you, that is something that we have not tried

And it’s much safer than a benzo. Oddly, it’s an antihistamine that has the side effect of lowering anxiety. Not habit forming and can be taken on an as needed basis. It tends to be sedating, but for some reason my family member who takes it doesn’t find it so.

[cjzimmer1]

28 minutes ago, Shelydon said:

Thank you, that is something that we have not tried

 

7 minutes ago, KSera said:

And it’s much safer than a benzo. Oddly, it’s an antihistamine that has the side effect of lowering anxiety. Not habit forming and can be taken on an as needed basis. It tends to be sedating, but for some reason my family member who takes it doesn’t find it so.

Mine was originally prescribed the hydroxyzine for sleep but it wasn't doing enough then they tried it as a daytime thing and it was just the trick.  However the caveat like all medicines is that it doesn't work for everyone.  I have a relative who tried it and it made her want to crawl out of her skin, that person is doing well with Wellbutrin plus her SSRI

[Kassia]

I was prescribed  hydroxyzine for anxiety but have never taken it because I'm afraid it will knock me out and I don't want that.  I wonder if I should try it.  

[Rosie_0801]

8 hours ago, Shelydon said:

She will usually tell me, I know that I'm supposed to stop the thought, but I do not understand how you're actually supposed to *do* that. And honestly, I don't have anything for her. I am not successful in stopping a thought, I just don't react to it if it's problematic. 

One way is like casting a Harry Potter patronus charm.
Singing can work. 
Staring can help. Moving your eyes makes it easier for the brain to obsess.
If worst comes to worst, cycling through problematic thoughts quickly so you don't get bogged in any one of them can get one through when there's a time limit. (Eg, highway driving sets me off.)

[gardenmom5]

8 hours ago, KSera said:

Is that the instruction from therapy, that you should stop whatever thought is sending her into a panic? If that’s the case, I agree with you that stopping a thought is difficult, much less stopping someone else’s thought. It’s the whole “don’t think about pink elephants” thing and I don’t see how that would be supposed to work. 

One of the things about autism, is the tendency to ruminate.  
what worked for me when my brain wanted to dwell upon unhelpful (or worse) thoughts, was just repeating one two one two one two. .  I wasn't trying to force myself to think of something else.

It started when i was using my nordic track (from before Icon bought them out.), and swinging my arms back and forth and one two one two . . . . 

so I started using it other times my brain would get stuck . . . it was a simple thing to focus on.

[PeterPan]

54 minutes ago, Kassia said:

I was prescribed  hydroxyzine for anxiety but have never taken it because I'm afraid it will knock me out and I don't want that.  I wonder if I should try it.  

It has a very short half life (90 minutes iirc but check) and won't just knock you out unless the dose is higher. You could split the tablet in half if it worries you. I wouldn't take it all the time, just me. At night to help the person sleep could be good and situationally could be good. Based on what I've seen with my ds, I'd be hesitant to drive with it. It's a methyl donor, so it can increase irritability with people with comt defects.

Other than that, give it a go. It's just an old school antihistamine, not a really big commitment. Your body will clear it in 6x half life and in my ds it was seemingly GONE in 4 hours. So it's not a long hang time and then the rebound of an ssri.

[cjzimmer1]

2 hours ago, Kassia said:

I was prescribed  hydroxyzine for anxiety but have never taken it because I'm afraid it will knock me out and I don't want that.  I wonder if I should try it.  

my kid was prescribed 50mg for sleep but uses only 12.5 mg during the day for the anxiety in case that helps with comparison for whatever dose you were prescribed.

[Kassia]

3 hours ago, PeterPan said:

It has a very short half life (90 minutes iirc but check) and won't just knock you out unless the dose is higher. You could split the tablet in half if it worries you. I wouldn't take it all the time, just me. At night to help the person sleep could be good and situationally could be good. Based on what I've seen with my ds, I'd be hesitant to drive with it. It's a methyl donor, so it can increase irritability with people with comt defects.

Other than that, give it a go. It's just an old school antihistamine, not a really big commitment. Your body will clear it in 6x half life and in my ds it was seemingly GONE in 4 hours. So it's not a long hang time and then the rebound of an ssri.

Thank you!  I was thinking of cutting it in half, but wasn't sure.  It was prescribed really as a rescue anxiety med and not for regular use, so I wouldn't take it all the time.  

2 hours ago, cjzimmer1 said:

my kid was prescribed 50mg for sleep but uses only 12.5 mg during the day for the anxiety in case that helps with comparison for whatever dose you were prescribed.

Yes, that does help!  Mine is 10 mg.  

The reason I'm so hesitant to take it is because most of the time my anxiety is at its worst when I'm feeling overwhelmed with too much to do (which, for me, doesn't take much - I get overwhelmed ridiculously easily).  So, taking something that could make me sleepy is out of the question because those are the times when I absolutely do not want to sleep because being productive is what I need to help control the anxiety.  If I sleep or I'm too drowsy to get things done, that would only make me more anxious.  But there are times when I'm physically and mentally sick from anxiety and desperately need help.

Edited June 12 by Kassia

[KSera]

49 minutes ago, Kassia said:

Thank you!  I was thinking of cutting it in half, but wasn't sure.  It was prescribed really as a rescue anxiety med and not for regular use, so I wouldn't take it all the time.  

Yes, that does help!  Mine is 10 mg.  

The reason I'm so hesitant to take it is because most of the time my anxiety is at its worst when I'm feeling overwhelmed with too much to do (which, for me, doesn't take much - I get overwhelmed ridiculously easily).  So, taking something that could make me sleepy is out of the question because those are the times when I absolutely do not want to sleep because being productive is what I need to help control the anxiety.  If I sleep or I'm too drowsy to get things done, that would only make me more anxious.  But there are times when I'm physically and mentally sick from anxiety and desperately need help.

Could you try it one evening close to bed time when you don’t have a lot to do and it’s okay if it makes you sleepy? Just be aware it may make you sleepier the first few times than it would if you were more used to it. 

[Eos]

You sound like you're doing everything right, and her continuing severe anxiety must be so challenging, I'm sorry.

If it was me, and I realize I am an outlier, I would continue those things but also begin to plan for her to not go to college, not be thinking she is going to leave home. I would tie her to me, figuratively, lovingly, and continue the meds, the therapy, add hard exercise with me or dh, and accept that she might not be able to go to college or move out now. She sounds like she needs tomato staking of a different variety that we don't expect of our older teens but we live in a brand-new world. I don't do tough love, life is tough enough.

Edited June 12 by Eos

[PeterPan]

7 hours ago, Kassia said:

my anxiety is at its worst when I'm feeling overwhelmed with too much to do (which, for me, doesn't take much - I get overwhelmed ridiculously easily). 

Have you thought about looking at genetics to see if there's a treatable underlying cause you could treat? With what you're describing, it doesn't seem like a short acting, occasional med is what you need. You need an answer for why this is happening so often. If you have your 23andme data, you can do a search for some basic things known to cause anxiety like this (zinc=zdr, nbpf3, etc.) and see what pops up. Might give you some answers. For me the b6 thing was a total surprise at how well it worked. I'm homozygous for the defect and it's like night and day when I take it. And no SSRI or prescription med would ever feel that way because they don't actually treat the underlying CAUSE, which in this case we could actually identify. 

There are also some lifestyle things you could do that might help, but really running genetics might turn up something.

Yes, the hydroxyzine at any dose could make you tired. My ds looked kinda zombie on it which is why we moved on from that med as a daytime option for him. It's great as a rescue/emergency thing, but by emergency I mean a really uncommon situation. It sounds like your issues are happening too frequently, which means you need some more consistent help. 

Sometimes GPs are really slow to want to move to something stronger. Not saying I'm a super fan of SSRIs, but that could be why you're not getting offered one. And if you tried one and didn't like it, again go back to the genetics question to see what you can find. There's also a gene you can look at tph2 for 5htp. It's just fascinating what you can find in there as you search.

[Kassia]

34 minutes ago, PeterPan said:

Have you thought about looking at genetics to see if there's a treatable underlying cause you could treat? With what you're describing, it doesn't seem like a short acting, occasional med is what you need. You need an answer for why this is happening so often. If you have your 23andme data, you can do a search for some basic things known to cause anxiety like this (zinc=zdr, nbpf3, etc.) and see what pops up. Might give you some answers. For me the b6 thing was a total surprise at how well it worked. I'm homozygous for the defect and it's like night and day when I take it. And no SSRI or prescription med would ever feel that way because they don't actually treat the underlying CAUSE, which in this case we could actually identify. 

There are also some lifestyle things you could do that might help, but really running genetics might turn up something.

Yes, the hydroxyzine at any dose could make you tired. My ds looked kinda zombie on it which is why we moved on from that med as a daytime option for him. It's great as a rescue/emergency thing, but by emergency I mean a really uncommon situation. It sounds like your issues are happening too frequently, which means you need some more consistent help. 

Sometimes GPs are really slow to want to move to something stronger. Not saying I'm a super fan of SSRIs, but that could be why you're not getting offered one. And if you tried one and didn't like it, again go back to the genetics question to see what you can find. There's also a gene you can look at tph2 for 5htp. It's just fascinating what you can find in there as you search.

Thank you!  I don't have any genetic data, but my dad suffered from horrible anxiety, too.  We both had traumatic childhoods, so its hard to say if it's nature or nurture.  Probably both.  I have been prescribed SSRIs for anxiety, but chose not to take them because I'm concerned about side effects.  I'm sure I need something long-term though because I'm truly suffering from the anxiety.  

[Wanttohomeschool]

I would look into gut microbiome reset or possibly keto diet. https://www.metabolicmind.org/

[PeterPan]

4 hours ago, Kassia said:

We both had traumatic childhoods, so its hard to say if it's nature or nurture. 

Straight answer? The trauma would cause dissociation but not the anxiety. So the trauma would make it harder for you to use coping skills and make yourself feel better, but it's not the underlying cause of the anxiety. And if you have a family history, it makes more sense to say bad chemistry caused a line of bad parenting. 

That's just my straight two cents.

The genetics can be the cheapest version of 23andme or ancestry. You can watch for a deal and download the raw data to run through engines.

[KSera]

3 minutes ago, PeterPan said:

The genetics can be the cheapest version of 23andme or ancestry. You can watch for a deal and download the raw data to run through engines.

My standard heads-up to do so only if you’re okay with your genetic data being sold and/or otherwise ending up with other parties than the one you originally gave permission to have it. 

[PeterPan]

17 minutes ago, KSera said:

My standard heads-up to do so only if you’re okay with your genetic data being sold and/or otherwise ending up with other parties than the one you originally gave permission to have it. 

Definitely. If it bugs @Kassia services like MaxGen can do it. They have a $199 test that cranks out a helpful analysis.

[Lecka]

I don’t know if this would be helpful — but I can recommend a book called Freedom From Self-Harm by Kim Gratz and Alexander Chapman.  
 

I just did a kindle search, and anxiety is mentioned 19 times in the body of the book.  Panic is mentioned zero times, though.  
 

It has a ton of ideas about handling strong emotions.  It has a ton of information about different therapies.  
 

Something this book advocates is to separate out self harm.  It says a lot of people think it’s better to work on other related issues, first, that are contributing to thoughts, urges, or actions of self harm.  This book advocates treating “just self harm” first or separately/concurrently.  They have seen people be able to address just self harm without addressing related issues.

 

Then, because they have address self harm, they can address other issues (aka by doing other therapy etc for related issues) and there is a lot less concern that strong emotions or stresses brought up by the other issues (or other therapies) will contribute towards self-harm.  
 

I kindle searched for suicide, there are a lot of results (63, but some may be in titles in the reference section).  However, in my memory it’s mostly talking about how self harm is usually different from suicide.  It’s not a book about suicide.  
 

The best book I have read about suicide is not a book about suicide, but it has a really good chapter.  The book The Bipolar Teen by David Miklowitz has Chapter 13:  Dealing with Suicidal Thinking and Behavior.  I don’t know if it would be worth getting this book for one chapter, I can just say, I can recommend this chapter.  I just skimmed through, and they do talk about anxiety several times, but it’s not primarily about anxiety.  It’s also a slightly older book, but I don’t think it’s dated…. I don’t think it necessarily has the most up to date options 100% of the time, but I don’t think it’s dated for a parent book, with an expectation of seeing a professional who would be up to date.  
 

An experience I have had, is that some therapists seem like they are for a smaller level of problem, and it’s hard to know how to find the ones who are working with a bigger level of problem.  For me personally, I went to a NAMI caregiver support group, and people there knew a million times more about options in my community.  For me personally, if there’s a clinic where people are referred to go to when they are leaving a psychiatric hospitalization, for example, that is going to be a totally different level than when there’s a counselor who is just not usually working with that level of client.  Locally if someone calls the NAMI phone number for our county, the person who answers the phone is really knowledgeable about local options.  She is a volunteer and one person is the driving force for NAMI in my entire county, so I don’t know if this would be as good in another location, but it is here.  I know she also gets calls from outside our county, I don’t know if that’s because people give out her name, or if people call different NAMI numbers in the state if they might drive into our town for treatment.