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What non-stimulant meds, supplements, treatments or foods have you found successful for ADD?

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Tap

Tap

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DD22 has ADD and several health issues (POTS, migraines, chronic fatigue, chronic urticaria are the biggest ones).

She has tried probably a dozen ADD meds including patches and she gets migraines from them all and a skin reaction to the patch. She has been working on taking one college class at a time and would like to start taking ADD meds again, but the very first pill of a very low dose stimulant gave her a migraine today. Historically, she could take it a few times before the migraines started building but that seems to no longer be the case. She has used caffeine in the past but with her tachycardia (part of her POTS), it isn't the greatest option.  I know we tried other things in high school, but don't remember them right now. 

What she already does to take care of herself daily:

Yoga 1-2x daily. Cardiovascular or weight lifting exercise as she is able

Well hydrated. Drinks very high amounts of electrolytes/fluids (over a gallon a day)

Sleeps 8-9 hours a night on a set schedule.

Takes vitamins and other meds for her migraines and other health concerns. No unknown vitamin deficiencies --she sees a naturopath who reviews this

Eats very healthy, (predominately cooks from scratch with whole grains, high amounts of vegies, and high quality meat). Limits sugar and caffeine. 

He hormones can be a bit wonky, but she has an IUD which helps regulate her. 

Avoids excessive screen time. 

Has high quality blue light limiting light bulbs in her whole house. Uses natural sunlight as much as possible.

Lives a relatively low stress life. Just her, her husband and thier dog. She works 3-4 days a week at a job she enjoys (she can't work full time due to chronic fatigue) 

She takes Emgality injection and Dolovent supplement for her migraines. 

 

What else have you found successful? or any suggestions?

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Carrie12345

Carrie12345

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No real suggestions, just sharing that I can relate. Caffeine was a bit helpful for dd... until she got a POTS dx, too. And it was my main “supplement” until it messed with other issues. It’s not fair!

DD does seem to do better with more moderate activity than she does with spurts of heavy activity and rest, but I think that’s primarily due to social/mental health needs giving her a positive impact rather than activity directly helping focus/function.

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ktgrok

ktgrok

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Posted (edited)

A friend's son takes some kind of fancy omega 3 supplement specifically for ADHD and says there is a real difference when he is on it. It's expensive, but she uses a manufacturer coupon or something I think. 

Oh, it's no longer being sold...but this is the info to find something similar maybe? https://www.verywellmind.com/vayarin-for-adhd-2633136

Edited by ktgrok
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PeterPan

PeterPan

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This is a situation where genetics and digging in on what is going on might help. Would you like to get in the weeds?

https://jmg.bmj.com/content/41/4/e38 Dopamine beta hydroxylase converts dopamine to norepinephrine, so a glitch in that can cause the orthostatic hypotension. And since the dopamine is (theoretically but questionably) low from the ADHD, you could have that glitched further. 

Not everyone with ADHD has low dopamine and taking methyls up could drive the headaches she's experiencing. I had severe headaches for years and no longer get them now that my methyls are controlled. So not needing dopamine could be an explanation for the poor reaction to the stimulant meds.

The genes you'd be looking for there are in the methylation cycle, things like COMT, maybe VDR. If she runs the cheapest 23andme and downloads the raw data, she will have a searchable text file. She can then run it through promethease to connect the RS numbers to more traditional names and make it searchable ($12), and she can run it through knowyourgenetics.com (free) to see the much of the methylation stuff. The DBH gene will show up in 23andme raw data btw with several alleles. 

Unfortunately, if she has the low norepinephrine with a DBH defect, I'm not sure there's a way to get it up naturally. There are things that feed in (niacin, copper, etc.) and things that make it worse (glyphosphates, meaning start eating organic) but none of that overcomes broken genes. So then you're talking a norepinephrine uptake inhibitor, which is what a lot of the nonstim meds are. So then what you're looking for is a chart showing the RATIO of the serotonin (if present) and norepinephrine selectivity. Some are 1:1, 30:1, and some are all norepinephrine. I take 5HTP to bring up my serotonin and control my dopamine, but that means an SSNRI (something with selectivity for both serotonin and norepinephrine) is overkill for me. 

Ironically, some of the SNRIs, ie meds trying to keep up norepinephrine, can make mania *worse*. Not rocket science when you consider that they  just messed with a process that was naturally pulling down dopamine to convert it to norepinephrine. 

In other worse, when you've got a complex situation you need more information to choose very carefully. 

Most of the time when docs are running genetics they're using some service that wants to provide trite, linear answers (this gene to this med) rather than looking at the BIG PICTURE of how it balances and why the situation as a whole was occurring.

7 hours ago, Tap said:

No unknown vitamin deficiencies --she sees a naturopath who reviews this

You'll probably need to question this. Were blood labs done? Genetics to check the transporters for things? My ds didn't appear to have a glaring zinc deficiency, but a small amount to compensate for his zinc transporter defect is quite stabilizing to his anxiety. 

Edited by PeterPan
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ealp2009

ealp2009

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TRE or trama or tension releasing exercises or shaking can help.  I took a class from a yoga instructor that was three sessions long and then she gave out a little booklet that had the routine.   Then I taught it to my son.  It is not designed for ADHD but we have found it helpful.   

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TechWife

TechWife

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Has she had any blood tests recently? I'm wondering specifically about B12. Taking a B12 supplement greatly improved my concentration, but I didn't realize I had concentration problems, so YMMV.

Also, is she seeing a psychiatrist for her ADHD meds? If not, I highly recommend it, especially with co-existing complex medical conditions. They have a different approach than a primary care provider and has been very  helpful to some family members.

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Tap

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11 hours ago, TechWife said:

Has she had any blood tests recently? I'm wondering specifically about B12. Taking a B12 supplement greatly improved my concentration, but I didn't realize I had concentration problems, so YMMV.

Also, is she seeing a psychiatrist for her ADHD meds? If not, I highly recommend it, especially with co-existing complex medical conditions. They have a different approach than a primary care provider and has been very  helpful to some family members.

Her PCP writes it, but I work in pharmacy so I understand the meds on a different level than most parents. I have also consulted friends who are mental health focused pharmacists. They agree with some guided choices, but then just trial and error from there. Her B vitamins levels are good. She either takes the Dolovent (supplement fax linked) or a b-complex. 

Supplimental Facts Label

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13 hours ago, ealp2009 said:

TRE or trama or tension releasing exercises or shaking can help.  I took a class from a yoga instructor that was three sessions long and then she gave out a little booklet that had the routine.   Then I taught it to my son.  It is not designed for ADHD but we have found it helpful.   

Ill have her look into this. Thanks

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14 hours ago, PeterPan said:

This is a situation where genetics and digging in on what is going on might help. Would you like to get in the weeds?

https://jmg.bmj.com/content/41/4/e38 Dopamine beta hydroxylase converts dopamine to norepinephrine, so a glitch in that can cause the orthostatic hypotension. And since the dopamine is (theoretically but questionably) low from the ADHD, you could have that glitched further. 

Not everyone with ADHD has low dopamine and taking methyls up could drive the headaches she's experiencing. I had severe headaches for years and no longer get them now that my methyls are controlled. So not needing dopamine could be an explanation for the poor reaction to the stimulant meds.

The genes you'd be looking for there are in the methylation cycle, things like COMT, maybe VDR. If she runs the cheapest 23andme and downloads the raw data, she will have a searchable text file. She can then run it through promethease to connect the RS numbers to more traditional names and make it searchable ($12), and she can run it through knowyourgenetics.com (free) to see the much of the methylation stuff. The DBH gene will show up in 23andme raw data btw with several alleles. 

Unfortunately, if she has the low norepinephrine with a DBH defect, I'm not sure there's a way to get it up naturally. There are things that feed in (niacin, copper, etc.) and things that make it worse (glyphosphates, meaning start eating organic) but none of that overcomes broken genes. So then you're talking a norepinephrine uptake inhibitor, which is what a lot of the nonstim meds are. So then what you're looking for is a chart showing the RATIO of the serotonin (if present) and norepinephrine selectivity. Some are 1:1, 30:1, and some are all norepinephrine. I take 5HTP to bring up my serotonin and control my dopamine, but that means an SSNRI (something with selectivity for both serotonin and norepinephrine) is overkill for me. 

Ironically, some of the SNRIs, ie meds trying to keep up norepinephrine, can make mania *worse*. Not rocket science when you consider that they  just messed with a process that was naturally pulling down dopamine to convert it to norepinephrine. 

In other worse, when you've got a complex situation you need more information to choose very carefully. 

Most of the time when docs are running genetics they're using some service that wants to provide trite, linear answers (this gene to this med) rather than looking at the BIG PICTURE of how it balances and why the situation as a whole was occurring.

You'll probably need to question this. Were blood labs done? Genetics to check the transporters for things? My ds didn't appear to have a glaring zinc deficiency, but a small amount to compensate for his zinc transporter defect is quite stabilizing to his anxiety. 

She has had tons of blood work done. I actually paid for full genome sequencing several years ago (on both her and dd14), but never did anything with it. There was an FDA issue with what they were offering and they didn't honor what they promised, so I kinda forgot about it. It is just raw data at this time. Your post is really interesting, and I will look more into it, when my brain can stop to think about the data and what I can't get from it.  Probably after Christmas, but I will get there eventually. LOL 

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17 hours ago, Carrie12345 said:

No real suggestions, just sharing that I can relate. Caffeine was a bit helpful for dd... until she got a POTS dx, too. And it was my main “supplement” until it messed with other issues. It’s not fair!

DD does seem to do better with more moderate activity than she does with spurts of heavy activity and rest, but I think that’s primarily due to social/mental health needs giving her a positive impact rather than activity directly helping focus/function.

LOL that is part of why she does yoga 2x per day. Two shorter sessions on days that she works, instead of one harder session. She can do harder workouts that involve cardio/weights but only on days that she doesn't work. It took her years to build up to simple workouts. Before POTS, she was a 3 sport athlete and honor student. POTS robbed her of her potential. She is clawing to get her life it back, but it is a very hard battle for certain. 

BTW.. have you heard that they are looking at if long COVID symptoms fall under dysautonomia? It might be the diagnosis that it ends up falling under, which I hope means tons of funding will follow!

 

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14 hours ago, ktgrok said:

A friend's son takes some kind of fancy omega 3 supplement specifically for ADHD and says there is a real difference when he is on it. It's expensive, but she uses a manufacturer coupon or something I think. 

Oh, it's no longer being sold...but this is the info to find something similar maybe? https://www.verywellmind.com/vayarin-for-adhd-2633136

Interesting! I will do some research on it. Thanks!

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Carrie12345

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5 hours ago, Tap said:

LOL that is part of why she does yoga 2x per day. Two shorter sessions on days that she works, instead of one harder session. She can do harder workouts that involve cardio/weights but only on days that she doesn't work. It took her years to build up to simple workouts. Before POTS, she was a 3 sport athlete and honor student. POTS robbed her of her potential. She is clawing to get her life it back, but it is a very hard battle for certain. 

BTW.. have you heard that they are looking at if long COVID symptoms fall under dysautonomia? It might be the diagnosis that it ends up falling under, which I hope means tons of funding will follow!

 

Yes!!! Of course I saw it because I was looking for Covid risks *TO* POTS patients, but could only find the opposite. Super interesting stuff that I definitely hope gets picked up on and sparks new findings!

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PeterPan

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9 hours ago, Tap said:

full genome sequencing

Wow! That would be a big file, lol. 

https://www.knowyourgenetics.com  Run it through here (free, fast, easy) and it will crank out a little color coded report showing any major issues with methylation (which would affect absorption of those B vitamins) and vitamin D. This is instantly useful information.

https://promethease.com  This will cost you $12, but it will crank out a file that you can save and search over and over. Then you can dig in at your leisure.

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