Need Med Information

[emmalily]

Ok, I'm finally taking the leap. After being in a low-grade exacerbation that was held at bay with antibiotics since October, it exploded this week following my first use of hormonal birth control (I know, I know, should have known better from the anecdotes on here that the hormones would be a bad idea...), a death in the family, and the stress of starting at a new school. Tics, OCD, and panic galore.

 

That said, I am in a bad place and as I'm only in the third week of the first semester at my new 4 year school (terrible beginning to what was supposed to be an exciting transfer) I am truly freaking out. My professors are understanding so far but I think I will run out my good graces still.

 

So even though I have been very anti-med for the last four years, I'm ready to take the plunge.

 

1) What are the best fast-acting, mid-panic ones?

 

2) How long to the SSRI's take to take effect?

 

3) Which drugs gave you scary symptoms and how effectively were these dealt with?

 

My psych is Dr. L in New Haven and he def knows what he doing...just would like an idea of what other people have experienced with this.

 

Thanks guys.

 

Oh, and for note: I am 23, female, and 105 lbs.

[LNN]

Em - I'm so sorry!!!! Down the road, you might consider 23andMe, as this could help your Dr determine which SSRIs would or wouldn't be most helpful and/or what alternative to meds could help. (I'd also happily help decipher the methylation stuff with you if you're ever interested).

 

But in the meantime, while I have no experience with prescription meds, tryptophan always helped my kids pretty quickly. I've taken it a few times and it did help with panic/anxiety w/in 20 min or so. I think MomwithOCDSon used valerian root.

 

Rooting for you!! You'll kick this!

[emmalily]

Thanks LLM...this just sucks so much right now but I'm making a plan and I think I'll be back out of the hole by my first school break which is in three weeks. Thanks for believing in me! Will def consider 23andme...would make sense to have some more info about my body going in.

 

emmalily

[MomWithOCDSon]

Hang in there, Emmalilly!

 

Yes, for some fairly immediate anxiety help, you can try valerian root; like most herbal remedies, I think you have to take it in somewhat copious and continuous amounts for lasting impact, but it can take the edge off. Maybe a couple of capsules in the morning before you head out to start your day, and keep them handy in the event you need some additional help before you can get back home/to the dorm.

 

Prescription-wise, I know some people have success controlling high anxiety and/or panic-type moments with quite low doses of clonanespam. It's a benzo, so not something to take consistently or at high doses, but it can be very effective "in the moment." And it doesn't have the side effects of some of the "heavy hitters" like Zyprexa or Seroquel. My DS used that intermittently at the height of his exacerbation, and I have another family member who will sometimes take a very low dose -- like .5 mg. -- before embarking on something that produces high anxiety for him, like flying or public speaking.

 

Emmalilly, do you have any other physical manifestations of your anxiety/panic, as in, do you experience stomach upset or reflux? Do you have issues with allergies or eczema? I ask because it seems like some of our kids (my DS for one) also has high histamine, and high histamine in the brain can increase anxiety and panic, too. Meanwhile, that same high histamine level throughout the body can induce reflux, hives and/or eczema, etc. So an antihistamine that goes to the gut -- Pepcid -- has been another tool for my DS during "ramped up" periods. It has been very effective for all the high histamine manifestations but doesn't make him sleepy like a classic antihistamine (like Benedryl) does.

 

Meanwhile, they'll tell you that it can take up to 4 to 6 weeks for a standard SSRI to reach full efficacy, but my son would begin to feel the impacts considerably quicker than that -- within a week. And that's been true for his positive response to the correct low dose, as well as his negative response to a dose increase that took him too far. SSRIs and their dosage don't really have any relationship to age or weight, or so they say, but given your PANDAS history, I'd imagine you and Dr. L. will want to start "low and slow," so it may take you longer to feel the right dose, unfortunately. If your dosage does get higher than ideal, though, I would imagine you'd know it within 24 to 48 hours, and any negative impacts should settle out within 24 to 48 hours of reducing the dosage again . . . at least it always has with my DS.

 

And finally, again, it may depend a lot upon your methylation issues as LLM has mentioned, but n-acetylcystein (NAC) has been very helpful for my DS's anxiety and OCD behaviors. In fact, I started decreasing his dosage a couple of weeks ago, hoping I can start to wean him off some of these supplements (I figure our chances of him taking everything regularly once he's off on his own this summer, for instance, is a pipe dream), and today he told me that he's been feeling more stressed and noting a few more compulsions in the last week or so. So tonight, I took his dosage back up. The Yale/NIMH trial for NAC to treat OCD called for an adult dosage of 3000 mg. daily, and that's what we've been giving him: 1800 mg in the morning (or 3, 600 mg. capsules) and 1200 mg. in the evening. This is another supplement I would start low and slow on, as some folks have a negative, rather than a positive, reaction to it. But if it works for you, it is very affordable and we've experienced no negative side effects. I imagine you can find the research paper on line if you're interested, but if not, I can always email it to you.

 

I'm so sorry you're struggling, but I know you're very strong and persistent, and you'll find your way through this! Sending cyber hugs and here if you need me at any time!

 

Nancy

[dcmom]

Have you tried steroids before ? Both of my kids have pandas, steroids have been a literal lifesaver for us.

 

Psych meds are tough- pandas patients especially need to go low and slow. You are looking at a possibility of 6 weeks before meds are at full dose and take effect. Pandas is so changeable, it makes it hard to figure out what is going on...

[qannie47]

Have you had your neurotransmitter levels checked? I think I would also do the Cunningham's panel as well if you are going to consider psyche meds. I don't know a whole lot about it, but It seems to me that is looks at dopamine levels amongst other things...

 

I tried 5htp (which increases serotonin) and it had no effect on my pandas ds at all. Not trying to persuade you in any direction, but thought I would share that.

 

As I have read and cross read much material about Pandas, I cant help but wonder why serotonin is the focus. I admit I am no doc, but to me it seems that it is the dopamine that is the problem. Perhaps this theory has been addressed and put to bed by the experts and I missed it, but it is the dopamine that jumps out at me....

 

Has anybody used meds that specifically address Dopamine instead of Serotonin? I would love to hear feedback on that because I have always wondered about that...

 

Dr. K, is of the opinion that too much Serotonin can cause havoc with Pandas....again, just sharing his opinion.

[lfran]

There is a saliva spit test from a company called Genomind that will very quickly tell you if your genetics make you a good or poor candidate for SSRIs and other neuropscyh medications. Here's the lnk. Turnaround is very quick. At least one of the originators of the test has written textbooks on neuropharmacology.

 

Sorry -- here's the link. http://www.genomind.com/products/assay

Edited February 5, 2014 by lfran

[lfran]

Bumping this because I omitted the link in my previous post. http://www.genomind.com/products/assay

 

I'm pretty sure it was covered by insurance.

[Hopeny]

Hang in there, Emmalilly!

 

Yes, for some fairly immediate anxiety help, you can try valerian root; like most herbal remedies, I think you have to take it in somewhat copious and continuous amounts for lasting impact, but it can take the edge off. Maybe a couple of capsules in the morning before you head out to start your day, and keep them handy in the event you need some additional help before you can get back home/to the dorm.

 

Prescription-wise, I know some people have success controlling high anxiety and/or panic-type moments with quite low doses of clonanespam. It's a benzo, so not something to take consistently or at high doses, but it can be very effective "in the moment." And it doesn't have the side effects of some of the "heavy hitters" like Zyprexa or Seroquel. My DS used that intermittently at the height of his exacerbation, and I have another family member who will sometimes take a very low dose -- like .5 mg. -- before embarking on something that produces high anxiety for him, like flying or public speaking.

 

Emmalilly, do you have any other physical manifestations of your anxiety/panic, as in, do you experience stomach upset or reflux? Do you have issues with allergies or eczema? I ask because it seems like some of our kids (my DS for one) also has high histamine, and high histamine in the brain can increase anxiety and panic, too. Meanwhile, that same high histamine level throughout the body can induce reflux, hives and/or eczema, etc. So an antihistamine that goes to the gut -- Pepcid -- has been another tool for my DS during "ramped up" periods. It has been very effective for all the high histamine manifestations but doesn't make him sleepy like a classic antihistamine (like Benedryl) does.

 

Meanwhile, they'll tell you that it can take up to 4 to 6 weeks for a standard SSRI to reach full efficacy, but my son would begin to feel the impacts considerably quicker than that -- within a week. And that's been true for his positive response to the correct low dose, as well as his negative response to a dose increase that took him too far. SSRIs and their dosage don't really have any relationship to age or weight, or so they say, but given your PANDAS history, I'd imagine you and Dr. L. will want to start "low and slow," so it may take you longer to feel the right dose, unfortunately. If your dosage does get higher than ideal, though, I would imagine you'd know it within 24 to 48 hours, and any negative impacts should settle out within 24 to 48 hours of reducing the dosage again . . . at least it always has with my DS.

 

And finally, again, it may depend a lot upon your methylation issues as LLM has mentioned, but n-acetylcystein (NAC) has been very helpful for my DS's anxiety and OCD behaviors. In fact, I started decreasing his dosage a couple of weeks ago, hoping I can start to wean him off some of these supplements (I figure our chances of him taking everything regularly once he's off on his own this summer, for instance, is a pipe dream), and today he told me that he's been feeling more stressed and noting a few more compulsions in the last week or so. So tonight, I took his dosage back up. The Yale/NIMH trial for NAC to treat OCD called for an adult dosage of 3000 mg. daily, and that's what we've been giving him: 1800 mg in the morning (or 3, 600 mg. capsules) and 1200 mg. in the evening. This is another supplement I would start low and slow on, as some folks have a negative, rather than a positive, reaction to it. But if it works for you, it is very affordable and we've experienced no negative side effects. I imagine you can find the research paper on line if you're interested, but if not, I can always email it to you.

 

I'm so sorry you're struggling, but I know you're very strong and persistent, and you'll find your way through this! Sending cyber hugs and here if you need me at any time!

 

Nancy

Nancy how do you test histamine?

[MomWithOCDSon]

Hopeny --

 

I know there are tests for histamine, but I don't recall what they are specifically; I think there are a couple of other threads on that here, and probably someone else more knowledgeable in the testing stuff can chime in, too. Sorry.

 

We've not officially tested. For us, we'd always thought that DS's histamine levels were high because he's generally been heavily impacted by seasonal allergies, and he's had bouts of eczema from birth. Then when he developed reflux (which we did not know at the time could be tied to histamine levels), we tried Pepcid and his response was remarkable. The eczema evaporated, his reflux stopped, and his "fight or flight" sort of "pop-up" anxiety episodes faded, too.

 

Also, FWIW, he pretty much matches Dr. Pfieffer's "high histamine/undermethylated" column to a T, particularly during exacerbation.

 

http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes

[lfran]

We just went a Pfeiffer clinic. The histamine they test for is the "whole blood histamine" and only Labcorp does it -- not Quest.

 

Don't have results back yet. Will post when we do.