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  #1  
Old 09-04-12, 03:39 PM
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Highly med-intolerant - not just me I hope

Hey folks,

I can't take meds. At all. For much of anything - even aspirin makes my throat itch & swell. Have tried quite a few meds for my (inattentive type) ADHD and have yet to find anything that doesn't produce intolerable side effects (serious debilitating depression, high fever, blood pressure shooting up, etc.)

Anyone else? How do you deal with this condition when so many of the anecdotes are "well, I had that problem but then my meds fixed it?" I've even stopped going to my local ADHD support group b/c so much of the conversation is about medication.

I take enough vitamins to float a boat. I hike about 12 miles a week, weightlifting really seems to help.

I guess what I'm interested in is - is there anyone else? How do you deal when even the greater ADHD community can't help? Thanks for any insights (and please, no insults directed to folks who DO take meds - I would myself if I could, it just so happens that I'm so med-sensitive I cannot.)
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Dx: Extra spicy (spacey?) Inattentive
Previous Rx: Extremely med-sensitive, so managing with vitamins/exercise.
Think there's a chance I may be hypokalemic oversensory.
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I'm a visual artist. Does the ADHD help? No idea...
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Old 09-04-12, 07:53 PM
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Re: Highly med-intolerant - not just me I hope

Gee your situation sucks (like you didn't know that already} Some folks say biofeedback helps, meditation, I am guessing you already take omega-3s .

I do not know of any one who has your exact troubles because every one is unique but there are other people who do not take ADHD medications due to adverse events that are specific for that individual, some simply do not believe in taking them.

There are a few folks who have nothing but bad reactions to stimulants, I'll see if I can illicit their help because I am not in your situation and frankly I would be full of crap if I pretended for a moment to even comprehend the frustration.
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Old 09-04-12, 09:06 PM
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Re: Highly med-intolerant - not just me I hope

I don't react well to stimulants- I can only take a small amount and I get side effects no matter what. I keep trying to use them though, because they are extremely effective.

My dose is typically 5 mg of ritalin or 2.5 mg of dexedrine. Have you tried taking a dose that small? I don't like taking them daily, right now I take them a couple days a week.

Apart from meds, I've found meditation to be the most useful alternative treatment for ADHD. I'm trying to get on a regular meditation routine right now, along with frequent time spent outdoors, and regular excercise.

After a successful period of long meditation, my brain feels much like it does on ritalin, and the results can last a couple days. It takes a while to get yourself to the point where you're comfortable meditating for long periods, but it's worth it. Even short periods of meditation are helpful.

I've found 2 books to be extremely helpful for managing my ADHD, and they're useful for people on or off meds- unlike some books which seem to be aimed only at those who take meds-

The first is Succeeding with Adult ADHD by Levrini and Prevatt. It's the best written coaching type book I've encountered, and the format is very easy to read.

The second is The Mindfulness Prescription for Adult ADHD by Zylowska, which is an excellent introduction to meditation for people with adhd.

Lemon Balm tea is supposed to be useful as well, I haven't tried it yet.
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Old 09-04-12, 09:27 PM
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Re: Highly med-intolerant - not just me I hope

I also have really intolerable side effects. I know some people do get high blood pressure and are.often given meds to counter those effects. Are you seeing a specialist? I'd highly recommend a psychiatrist who specializes in ADHD whenever medication side effects interfere with treatment, it's time for the pro's no messing around.

Other than that, I feel ya, I feel like I have my nose to the windows just outside wonderfulness. I wish I could tell you something that really works, you're already doing pretty much all the recommended stuff, somehow you just muddle thru. I do miss the benefits I got from meds but I just can't use them.

Sorry I couldn't be more help.
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Old 09-04-12, 10:10 PM
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Re: Highly med-intolerant - not just me I hope

I'm also very sensitive to meds but tried everything natural including various nootropics to treat my ADHD and came back to stimulants because they always work, even at a small dose.

Anyway, I've been trying lemon balm and 400mg l-theanine which calms me down without feeling sedated and the lemon balm actually puts me in a good mood. I'll be trying Rhodiola next along with l-tyrosine.
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Old 09-05-12, 10:05 AM
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Re: Highly med-intolerant - not just me I hope

How to deal with people who are "all meds all the time"? Good question.

I generally keep pretty quiet and listen for those small tidbits that sound helpful.

And once in a while I'll throw out a question or suggestion that isn't about meds.

I don't take stimulant meds because I don't have any health insurance.

I'm lucky that Omega 3 fish oil supplements helps my mental clarity a lot.

I've had some scary reactions to other meds, including one for high blood pressure.

My 14 year old granddaughter has had some bad reactions to stimulant meds.

She took a meds break this past summer, but agreed to give them a try again

since she is starting high school and the work and pressure is so much greater.

She takes a very small dose of Adderall and the side effects are tolerable.

She had such a bad reaction to Vyvanse it was hard to convince her to try anything else.

Last year her teachers were great about letting her chew gum in class to help her focus.
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Old 09-05-12, 10:53 AM
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Re: Highly med-intolerant - not just me I hope

OP: is it possible to take the tinniest tiny dose of a stimulant or does that bother you too>?
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Old 09-17-12, 01:10 AM
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Re: Highly med-intolerant - not just me I hope

Hey folks, thanks for all the thoughtful replies. So far I haven't found any prescription pharma I can take at all - even a little bit. I think I've utterly exhausted my psychiatrist.

Also, part of my problem is that I get such violent, severe reactions that it's made me a little hesitant to try anything - since meds usually make me sick for at a minimum of three or four days, and as a self-employed type I rarely have that many days to lose.

Just after I wrote this post I ran across some info about hypokalemic overstimulation - I think there's a good chance I may have something similar and am trying potassium, which seems to be helping my (related? unrelated?) horrific PMDD symptoms.

(This alone is just such a relief - I've had so many tests I feel like a pincushion - thyroid, PCOS, blood tests, only to be told 'there's nothing wrong with you' while meanwhile I gain upwards of ten pounds per month, suffer from near-total insomnia and horrible nausea for days and days.) I'm cautiously optimistic - usually I'd be swollen and sick by now, but so far so good.

Am thinking I'll need to go back to the psych to get whatever small dose of Xanax I can (I cut those pills into 1/4ths, they're the only thing that sometimes works on the insomnia.) Maybe I'll see if he'll try me on dex. Not sure if he'll go for it since I can't even take Strattera, but he's a great guy so I'll see.

Thanks again. Helps to know I'm not alone, sure feels like it sometimes. (I also have really severe reactions to strong smells - earlier today my poor husband was subjected to a tirade after he sprayed 409 all over the garage... it really makes me sick. Sigh)
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Dx: Extra spicy (spacey?) Inattentive
Previous Rx: Extremely med-sensitive, so managing with vitamins/exercise.
Think there's a chance I may be hypokalemic oversensory.
(Age: 42; female, married to a non-ADD)
I'm a visual artist. Does the ADHD help? No idea...
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Old 09-17-12, 01:34 AM
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Re: Highly med-intolerant - not just me I hope

I can't handle chemical smells either. Lysol or bleach can make me feel like puking. Interesting, I never put my chemical sensitivity together with my med sensitivity.
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Old 09-17-12, 03:23 AM
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Re: Highly med-intolerant - not just me I hope

Quote:
After a successful period of long meditation, my brain feels much like it does on ritalin, and the results can last a couple days. It takes a while to get yourself to the point where you're comfortable meditating for long periods, but it's worth it. Even short periods of meditation are helpful.
Ana, how long do you meditate for per day? I once did a TM meditation course and kept it up for a few years. Now I'm out of the habit and only do it now and then when I'm feeling really stressed. I've been thinking lately that I need to get back into it,on a daily basis, as it is really beneficial for anxiety as well.

Lx
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Old 09-17-12, 08:39 AM
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Re: Highly med-intolerant - not just me I hope

409 is evil !!!

Bless her heart, my boss has been so great about working with me to find cleaning

products that don't make me sick. I think she still uses the 409 during the week

sometimes when I'm not there. (I clean a beauty salon once a week)

Bleach is something I can stand - but Lysol is just as evil as 409. I was unpleasantly

surprised when she bought Lysol toilet bowl cleaner this time.

I don't know whether to ask her to buy something else, or to buy something else

myself and take it to work, or to just wear my face mask and get it over with as

quickly as possible. Making decisions sucks.



As far as meds (back on topic) I've only had bad reactions to meds twice.

But one of those times was an anaphylactic reaction, not a bad one, but scary.
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Old 09-17-12, 01:27 PM
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Re: Highly med-intolerant - not just me I hope

I had urinary issues with adhd meds, Adderall in particular made my kidneys hurt. I'm taking now only one dose of Ritalin a day and then use a small dose of Bethanechol to relieve urine flow problems, sometimes I take Tynenol when it gets painful or when I anticipate pain (I probably shouldn't be popping so many tynenol pills a week, but what the heck).
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Old 09-17-12, 02:13 PM
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Re: Highly med-intolerant - not just me I hope

Quote:
Originally Posted by Lisa_Mac View Post
Ana, how long do you meditate for per day? I once did a TM meditation course and kept it up for a few years. Now I'm out of the habit and only do it now and then when I'm feeling really stressed. I've been thinking lately that I need to get back into it,on a daily basis, as it is really beneficial for anxiety as well.

Lx
I really struggle with making myself meditate on my own. I prefer to meditate with groups, and most seem meet for an hour and a half. There are a number of Zen Buddhist groups in my area.

I seem to get more benefit from the super long sessions (hour plus), they last me for a few days (without meds). It's like my anger and impatience get turned off, I'll see myself in a situation were I would normally get frustrated, but my brain decides to remain calm. It's really cool. Eventually I feel my brain return to normal on the third day.

I'd be very happy if I managed to make it to a group session twice a week. Right now I'm struggling to maintain once a week.
I try to practice mindful awareness all the time, but really it's an idea that just pops into my head randomly, and when it does I practice it.

Have you seen "the mindfulness prescription for ADHD"? It has a cd of guided meditations, I'm also trying to make myself do one of those a day.
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Old 09-18-12, 02:54 PM
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Re: Highly med-intolerant - not just me I hope

I should add- the long sessions are broken up- so it will be 20-30 minutes sitting, walking meditation for 5 minutes, then another 20-30 sitting, then maybe one more round of walking and sitting.

The walking part is really important- it keeps your legs from cramping and if the sitting portion's not going well it gives you something to look forward to. When the bell dings for the walking portion sometimes I am fully immersed in meditation and I feel like time flew by. Other times I'm like "Thank god, walking! I am so bored!" Walking helps recenter me if I wander.

If you are meditating at home I find walking meditation the easiest to do.
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