What are some additional options for severe anxiety?

[Shelydon]

4 hours ago, KSera said:

If she’s going to take a benzo, can it be on an only as needed basis? Taken daily like that, the body can pretty quickly habituate to them and even after just a few weeks, trying to reduce them can cause a rebound in anxiety more severe than the initial symptoms. Did she already try hydroxyzine for the anxiety? It can be taken daily or as needed and is not habit forming. It also helps with sleep. Maybe she already tried that, though. 

 

3 hours ago, livetoread said:

Please know that tolerance can develop in just a few days and addiction can happen in 3-4 weeks of daily use. Not everyone, certainly, but it's a risk even when taken as prescribed.

What if they work, then what? I understand how awful this is for all of you, but these drugs are not a long term solution, and coming off of them can be dangerous and difficult. I'm so sorry this is happening.

 

2 hours ago, PeterPan said:

I'll ditto the others that I would be looking for a 2nd opinion. Some psychs are really fast to dispense benzos, almost as if to say they're out of tools. And it's not that I'm anti benzos because I have a family member on them where it makes sense. But with a very young person, that's just really young to be going that way. One of my people was offered them and I turned them down and got a new psych. 

She has seen this psych for 4 years, and he is very patient and not quick to prescribe anything at all.

2 hours ago, PeterPan said:

Most SSRIs are methyl donors, so the not sleeping could be that the methyls in it are stimulating. People with COMT defects tend not to tolerate those methyl donor meds as well. And the great irony is that the symptoms of the methyls ramping up will include, drum roll, anxiety.

The methylation issues matter because hydroxyzine mentioned on here is also a med with methyls and also going to be paradoxical (improving anxiety and then stimulating with the methyls). 

She may do better with a completely different class of med like an atypical antipsychotic. 

The SSRI always affects her sleep, but going up the dose makes it impossible to go to sleep at all. She has tried a couple of SSRIs and didn't not well at all on them, it made things significantly worse, so I am hesitant to start drug shopping again.

1 hour ago, Terabith said:

Yeah, this is all kind of alarming. Ben’s make sense for things like fear of flying, something that you don’t do often.  Is this a psychiatrist?  I definitely think you need a second opinion.  

Yes, a this is a psychiatrist she has seen for years.

 

I am very comfortable with the decision.  The drug is often prescribed as a seizure medication and used for decades by a patient.  We are out of options.  There is one inpatient place in my area and they only accept patients that will imminently harm themselves or are attacking others. 

 

Today after half of the smallest available dose, she is walking around the house singing, wanting to register for the SAT to up her score and working on scholarship applications. 

Edited July 17 by Shelydon

[Lecka]

Great news it’s helping!!!!!!

[Terabith]

Things I would want to try:  

1) different SSRIs.  Sometimes people don’t respond to one and do to another. 
2) small 12.5/25 mg) dose of trazodone 

3) gabapentin - This was an absolute game changer for me  

4) tricyclic antidepressant 

5) Wellbutrin 

6) ketamine 

7) TMS 

8 - atypical antipsychotic 

9) Occupational therapy looking at sensory and reflexes

 

I am glad the benzo is helping though!

Edited July 18 by Terabith

[KSera]

I’m glad she got some relief yesterday. I’m sure she (and you!) really needed a break from the constant anxiety.

I do find that psychiatrists almost always severely downplay the difficulty of withdrawing from various psychiatric medications. One would think they would be the ones most familiar with how difficult it can be, but perhaps because it’s their profession to prescribe them, they seem to always act like it’s no big deal to start and stop any medication at any time, while the people actually taking them know that’s not the case at all.
 

Benzodiazepines are not meant to be prescribed for long-term use because not only is dependence and withdrawal a problem, but most people habituate over time and the dose that used to help no longer does, but also they can’t stop that dose because their body now requires it just to maintain previous baseline.  Not trying to harp, I’m just concerned if the psychiatrist made it sound like it wasn’t a problem to be concerned with. That would be more concerning to me than if he/she acknowledged that it could be a problem but that it was the only thing they could think of to do now. Are they helping you look at options for TMS or ketamine? 
 

[Shelydon]

5 hours ago, Terabith said:

Things I would want to try:  

1) different SSRIs.  Sometimes people don’t respond to one and do to another. 
2) small 12.5/25 mg) dose of trazodone 

3) gabapentin - This was an absolute game changer for me  

4) tricyclic antidepressant 

5) Wellbutrin 

6) ketamine 

7) TMS 

8 - atypical antipsychotic 

9) Occupational therapy looking at sensory and reflexes

 

I am glad the benzo is helping though!

She has been taking Trazadone at 12.5 mg for about 2 years.  I have a call into a local place for an appointment to look at TMS. There is a wait, but we should be in a couple of months.   Trying to find an OT that treats sensory and reflexes so far for no luck, but I have contacted 15 private practices, so maybe one will pop up. 

The issue with trying new antidepressants is that Zoloft typically has the fewest side effects and she has multiple side effects on it.  The other drugs she has tried met with severe side effects.  Her doctor does a really slow taper-- so three months to taper off her current med, then restart a new med and wait 4-8 weeks to see what happens.  Taper it if there are problems and start a new drug.  We could not wait that long.  Maybe later.

 

Edited July 18 by Shelydon

[Shelydon]

4 hours ago, KSera said:

I’m glad she got some relief yesterday. I’m sure she (and you!) really needed a break from the constant anxiety.

I do find that psychiatrists almost always severely downplay the difficulty of withdrawing from various psychiatric medications. One would think they would be the ones most familiar with how difficult it can be, but perhaps because it’s their profession to prescribe them, they seem to always act like it’s no big deal to start and stop any medication at any time, while the people actually taking them know that’s not the case at all.
 

Benzodiazepines are not meant to be prescribed for long-term use because not only is dependence and withdrawal a problem, but most people habituate over time and the dose that used to help no longer does, but also they can’t stop that dose because their body now requires it just to maintain previous baseline.  Not trying to harp, I’m just concerned if the psychiatrist made it sound like it wasn’t a problem to be concerned with. That would be more concerning to me than if he/she acknowledged that it could be a problem but that it was the only thing they could think of to do now. Are they helping you look at options for TMS or ketamine? 
 

He gave plenty of warnings and I totally understand the issues with the drug class. 

I also have read that other meds like Effexor are even worse to come off of and people break the capsules and count the tiny balls inside to reduce their dose over 12 months.  I think no matter what drug you choose, there is going to be downsides.  Her doc is a slow taper, so even trying a new anti-depressant would take 3-4 months.

[KSera]

Yeah, I’ve heard that about Effexor as well. 
 

I mentioned hydroxyzine earlier. Has that ever been tried? Oddly, it’s an antihistamine, so totally different mechanism than an SSRI. 

[Shelydon]

17 hours ago, KSera said:

Yeah, I’ve heard that about Effexor as well. 
 

I mentioned hydroxyzine earlier. Has that ever been tried? Oddly, it’s an antihistamine, so totally different mechanism than an SSRI. 

I am digging through her old scripts and I don't think so. She is only other OTC antihistamines, for allergies, but has not used that. I put it in my notes to ask about her next appointment, which is in 10 days. 

[PeterPan]

On 7/17/2024 at 5:29 PM, Shelydon said:

The SSRI always affects her sleep, but going up the dose makes it impossible to go to sleep at all. She has tried a couple of SSRIs and didn't not well at all on them, it made things significantly worse, so I am hesitant to start drug shopping again.

And you said they ran some genetics? Was it Genesight? It will have the RS numbers for the SNPs (alleles of the genes) in the footnotes. You can use that to work backward, or you could run through a company like MaxGen that will give you helpful analysis of health related genes.

The stimulating effect with the SSRIs could be from the methyls. Your body uses methylation for the chemical pathways for dopamine, serotonin, vitamin d, all sorts of things. Some people have poor methylation because they have a defect in their MTHFR gene, while other people have methyl levels that go too high. So if your levels tend to go high and you add even more methyls, you get overstimulation and ramping up and INCREASE of the symptoms. 

So no, I'm with you that randomly trying more meds without understanding why she's having the reaction could be just more frustration. On the other hand if you had that genetic info, you could sort through the reason for the overstimulation by the SSRIs, check some other genes involved (DRD2=dopamine receptor, etc.), and then make an informed choice on a better med to try. 

22 hours ago, Shelydon said:

The issue with trying new antidepressants is that Zoloft typically has the fewest side effects and she has multiple side effects on it.  The other drugs she has tried met with severe side effects.

So they're not right for her chemistry.

This is just an article that turned up with google. https://www.rupahealth.com/post/understanding-the-impact-of-methylation-on-mental-health-disorders

https://www.gdx.net/core/support-guides/methylation-support-guide.pdf  This has some charts so you can see how the methylation cycle affects the mental health chemistry. 

Not saying use these vendors, just trying to find you some charts so you can see why it matters. 

https://knowyourgenetics.com/  She has a free engine to run your raw data through and puts things in plain english.

So yes, things that are overstimulating are pushing in more methyls, driving dopamine and hence agitation up even higher. So atypical antipsychotics, vitamin D, unmethylated B vitamins, anything that pulls DOWN methyls will help tamp down the symptoms. Just for kicks, you can pull the methyls down with niacin and see pretty quickly what effect it has. You would need to use a no-flush (normal, inexpensive) version and she will flush. Some people who are agitated at night will find it goes down and they can get to sleep taking niacin. You would want to start low, maybe 100mg, and work up. 

Is she taking methylated vitamins? Those would make it worse if she has the comt defects.

On 7/18/2024 at 12:42 PM, Terabith said:

different SSRIs.  Sometimes people don’t respond to one and do to another. 
2) small 12.5/25 mg) dose of trazodone 

3) gabapentin - This was an absolute game changer for me  

4) tricyclic antidepressant 

5) Wellbutrin 

All of these will be methyl donors. 

On 7/18/2024 at 12:42 PM, Terabith said:

8 - atypical antipsychotic 

Yes. So it's going in the totally opposite direction and controlling dopamine rather than ramping it up. 

 

22 hours ago, Shelydon said:

Trying to find an OT that treats sensory and reflexes so far for no luck, but I have contacted 15 private practices, so maybe one will pop up. 

You may need to network a bit. You could post on the Interoception FB group and see if anyone is in your state. You could work with them via tele and just go once a month for testing and some hands on instruction. Then you'd come and do the homework and check in weekly via tele. 

[KSera]

30 minutes ago, PeterPan said:

Is she taking methylated vitamins? Those would make it worse if she has the comt defects.

I continue to wonder this. Don’t underestimate how much anxiety methylated B’s can cause some people. My family member who can’t take methylated vitamins is the same one who had a very bad reaction to Zoloft, which further makes me wonder about that. 
 

OTOH, I’m not a believer that running genes can tell someone exactly what medications will and won’t work. I think there can be some things that help with some decisions—MTHFR and COMT for example. But I haven’t seen any indication it’s super reliable for being able to choose which psych med. 

[ktgrok]

3 hours ago, KSera said:

I continue to wonder this. Don’t underestimate how much anxiety methylated B’s can cause some people. My family member who can’t take methylated vitamins is the same one who had a very bad reaction to Zoloft, which further makes me wonder about that. 
 

OTOH, I’m not a believer that running genes can tell someone exactly what medications will and won’t work. I think there can be some things that help with some decisions—MTHFR and COMT for example. But I haven’t seen any indication it’s super reliable for being able to choose which psych med. 

I can't have high level of methylated B vitamins without anxiety. Definitely a real thing. 

[PeterPan]

4 hours ago, KSera said:

I haven’t seen any indication it’s super reliable for being able to choose which psych med. 

It's definitely not as linear as Genesite wants to make it, which is why almost NO providers listed by them are actually doing it in my area. I've got someone being slowed down by being told to do this testing, and I'm so aggravated. It will not turn up enough data to make meaningful recommendations for my loved one's incredibly complex situation and could result in further errors. So not a fan. Shallow thinkers want linear answers and these are NOT linear, one gene one answer problems.

Now if you take your raw data and reverse hack it with the genesite sample reports, looking at the snps they look at for metabolism of meds, that gets more interesting. 

[Shelydon]

Update-- DD rode in a car with someone else to an activity yesterday.  I was at the activity because I was a chaperone, but that is a HUGE leap.

[Shelydon]

Update-- DD has weaned off ( a very low dose) of Klonopin.  Weaning was very easy, no ill effects.  Anxiety was back as soon as she stopped the med.  She'll have an appointment in a week or so to see what else is possible. 

[KSera]

35 minutes ago, Shelydon said:

Update-- DD has weaned off ( a very low dose) of Klonopin.  Weaning was very easy, no ill effects.  Anxiety was back as soon as she stopped the med.  She'll have an appointment in a week or so to see what else is possible. 

How long has it been since she stopped completely? Klonipin withdrawal symptoms can last quite awhile and because it has such a long half life, they often don’t begin when someone first starts to taper. Might it help her to know that the anxiety she’s feeling may be a withdrawal symptom and doesn’t necessarily mean her previous symptoms are going to return once her body has adapted?
 

We talked about hydroxyzine in this thread and you were thinking that that’s not something she has tried. That’s an antihistamine used for anxiety rather than an SSRI. I’m sorry she’s not finding a good solution yet and hope that will happen soon.
 

[Shelydon]

13 minutes ago, KSera said:

How long has it been since she stopped completely? Klonipin withdrawal symptoms can last quite awhile and because it has such a long half life, they often don’t begin when someone first starts to taper. Might it help her to know that the anxiety she’s feeling may be a withdrawal symptom and doesn’t necessarily mean her previous symptoms are going to return once her body has adapted?
 

We talked about hydroxyzine in this thread and you were thinking that that’s not something she has tried. That’s an antihistamine used for anxiety rather than an SSRI. I’m sorry she’s not finding a good solution yet and hope that will happen soon.
 

About a week off. She has not tried hydroxizine - so far any antihistamine she has tried for allergies makes her really tired, so I'm not sure about it. We will be talking to her physician about trying a different SSRI or another class of med entirely.  She said she felt like in a completely different person while taking Klonopin -- It was the first time she can ever remember not having to alter every part of her life because of anxiety. 

Edited September 14 by Shelydon

[freesia]

9 hours ago, Shelydon said:

About a week off. She has not tried hydroxizine - so far any antihistamine she has tried for allergies makes her really tired, so I'm not sure about it. We will be talking to her physician about trying a different SSRI or another class of med entirely.  She said she felt like in a completely different person while taking Klonopin -- It was the first time she can ever remember not having to alter every part of her life because of anxiety. 

Why did she go off the Klonopin then?

[Shelydon]

3 hours ago, freesia said:

Why did she go off the Klonopin then?

Her doctor will only prescribe for 6-8 weeks. That seems to be very standard across all medical professions, many won't prescribe it at all. 

[KSera]

Another thought is a beta blocker, like propranolol. 

How long was her taper? It’s often done over 10+ weeks (sometimes much longer for people who have been on them a long time), so I wonder if it was too quick for her body. 

[Shelydon]

On 9/14/2024 at 10:26 AM, KSera said:

Another thought is a beta blocker, like propranolol. 

How long was her taper? It’s often done over 10+ weeks (sometimes much longer for people who have been on them a long time), so I wonder if it was too quick for her body. 

She has tried propranolol without success