Strattera (atomoxetine)

[AFCFS]

I used to travel down these roads: Strattera, Concerta, Adderall XR, Vyvanse, Intuinv. Without fail, they all felt good at first and then eventually felt like an energized straight jacket for my mind, like a horse with blinders, a hyper-focus with no end.

With the Vyvanse in particular, on the first day, after not using it for a long time, I would get the initial dopamine drop or flush and it would feel like God was sitting in my lap. I just marveled at life the whole day. From there it got worse until it seemed like I had the devil on my shoulder, beseeching me to be ever vigilant, obsessively focusing on the most minute of details, to the point of slowly dropping off in effect as though I was then of two minds in one long day, before I realized that I needed rest, but then the taskmaster again in the morning after a short time of rather agitated sleep.

I found Pristique with its SNRI approach to me just as annoying and lead to migraines that lead to an ER visit that led me to stopping it. Now I just say No. But they work differently for all, so if there is benefit, then that is great.

 

[Valentijn]

I used to travel down these roads: Strattera, Concerta, Adderall XR, Vyvanse, Intuinv. Without fail, they all felt good at first and then eventually felt like an energized straight jacket for my mind, like a horse with blinders, a hyper-focus with no end.

Eventually I felt a bit hyped up with the Strattera, but dropping down to 10mg twice per day seems to have helped. And for me it's worth it if it means I can stand up for more than 5 minutes. I was housebound before starting Strattera, and unable to think clearly most of the day due to OI/circulatory problems.

For ADHD it can take weeks or months to notice an effect, so maybe it is cumulative to some extent, and once we've been on it for a bit, maybe a smaller dose is enough to maintain the same effect. At any rate, I seem to be getting the same benefits from 10mg that I used to get from 20mg, without the buzz.

 

[Valentijn]

Still doing good taking 10mg twice per day. No buzz, feeling good, able to do stuff!

I went to the doctor today, and he checked my BP twice and both times it was 117/72, so a pulse pressure of 45. Yay! Then went out to lunch and grocery shopping, and just feeling a little tired out, not wiped out

 

[xks201]

Yeah I am thinking a Norepinephrine Transporter Deficiency/genetic defect could be the reason we are susceptible to POTS. I wonder if 23andme tests for that..

 

[Valentijn]

Yeah I am thinking a Norepinephrine Transporter Deficiency/genetic defect could be the reason we are susceptible to POTS. I wonder if 23andme tests for that..

Maybe. But in my case I don't have POTS. Also, my actual norepinephrine (both urine and blood platelet) levels are low, and I'm not sure that would happen if it was a problem with the transporter.

Any idea if there's studies regarding norpephrine/norepinephrine transporter and ME/CFS or NMH or POTS?

 

[xks201]

Vanderbilt has a lot of them just google norepinephrine transporter POTS. A bronchodilater like albuterol or formoterol might benefit you a lot if you are low on epinephrine as they bind to the same receptors and act like it.

 

[Valentijn]

It's been 6 weeks on Strattera, so time for another update. Basically everything is still great regarding my OI/NMH. I was able to do a lot of cooking (and supervising) during Thanksgiving dinner preparation with no problems yesterday. I was standing long enough for my feet to start hurting, but no OI symptoms

My threshold for PEM is still ridiculously low, and it chafes at me more now that I can stand up and think clearly enough. Half the problem is gone, and it annoys me immensely that the other half of the problem is still there and preventing me from fully benefiting from getting the other half solved! I have to focus on the gains I've made in what I can do, rather than what I still can't do.

I see the naturopathic doctor here in Seattle on Monday, then I'm back in the Netherlands on Thursday, and getting a Tilt Table Test on December 5th (happy Sinterklaas!). After that the Plan is to see my Dutch GP, fill her in on the latest test results, and try to get my Strattera prescribed through the Dutch system. Then it's free and I won't have to mess with splitting doses. I'll be taking a few months supply of Strattera with me, in case there's any delays in getting it prescribed there.

 

[orion]

Hi Valentijn,

Can you give us an update on how you're doing on Strattera? I'm wondering whether the improvements you noticed have been maintained in the long term.

Thanks

 

[IreneF]

I just stumbled on this thread. I've been feeling better lately but I still have OI or POTS problems after taking a bath. I don't even immerse myself these days--I sit on a low stool and pour water over myself. Has anyone been able to resolve this with Strattera or other ADD drugs?

 

[Sushi]

I just stumbled on this thread. I've been feeling better lately but I still have OI or POTS problems after taking a bath. I don't even immerse myself these days--I sit on a low stool and pour water over myself. Has anyone been able to resolve this with Strattera or other ADD drugs?

Strattera took away all my OI symptoms--including the difficulty of standing in the shower--but it is in no way curative--only deals with symptoms and only for a certain percentage--like everything else!

Sushi

 

[IreneF]

Strattera took away all my OI symptoms--including the difficulty of standing in the shower--but it is in no way curative--only deals with symptoms and only for a certain percentage--like everything else!

Sushi

Did you have symptoms only while you were in the shower, or did your symptoms come on afterwards? My problem is the aftereffects.

 

[Valentijn]

Can you give us an update on how you're doing on Strattera? I'm wondering whether the improvements you noticed have been maintained in the long term.

I guess I've been on Strattera about 4 months so far, and it's still working great. The only change I've made is to add an extra dose per day, so now I take 10mg at 7-8am, noon-1pm, and 4:30-5pm. So 3 doses of 10mg per day, each about 5 hours apart. Then I'm up and mentally alert literally all day, which is great.

I still crash from PEM at the drop of a hat, so it's having no impact on that. But I can generally read, play complicated computer games, have intelligent conversations, understand and speak in a language I'm learning, research stuff, etc. I sit up all day now, and rarely need to lie down in the middle of the day. So it's still a huge improvement, and has no signs of diminishing in effectiveness.

I've been sick the past couple weeks (with a REAL virus, and coughing and snot and sore throat and everything!) so that's been limiting me somewhat. I've had a couple days where I was laying down in zombie mode, but I was oozing snot everywhere at the same time, so pretty sure it was just the effects of the flu, rather than the Strattera not working.

I just stumbled on this thread. I've been feeling better lately but I still have OI or POTS problems after taking a bath. I don't even immerse myself these days--I sit on a low stool and pour water over myself. Has anyone been able to resolve this with Strattera or other ADD drugs?

I've always been a bathtub girl, even before I got sick. But when visiting family when I first started on Strattera, I went from badly needing to use the shower stool we bought (vacation house had no adult-sized bathtub), to being able to easily shower standing up. No after-effects now from hot showers or hot baths, aside from feeling too warm to use my electric blanket afterward. Before Strattera, I would often need to lie down after a hot bath - once I hurried myself, and started down the stairs too soon, and had to stop half-way and sit down to avoid falling.

The hardest part for me is to deal with being SO improved, but still being SO disabled. No longer limited by OI, but still badly limited by PEM. There's a tendency to focus on remaining limitations, so sometimes I have to remind myself how much worse it was overall 4 months ago.

 

[orion]

I guess I've been on Strattera about 4 months so far, and it's still working great. The only change I've made is to add an extra dose per day, so now I take 10mg at 7-8am, noon-1pm, and 4:30-5pm. So 3 doses of 10mg per day, each about 5 hours apart. Then I'm up and mentally alert literally all day, which is great.

I still crash from PEM at the drop of a hat, so it's having no impact on that. But I can generally read, play complicated computer games, have intelligent conversations, understand and speak in a language I'm learning, research stuff, etc. I sit up all day now, and rarely need to lie down in the middle of the day. So it's still a huge improvement, and has no signs of diminishing in effectiveness.

I've been sick the past couple weeks (with a REAL virus, and coughing and snot and sore throat and everything!) so that's been limiting me somewhat. I've had a couple days where I was laying down in zombie mode, but I was oozing snot everywhere at the same time, so pretty sure it was just the effects of the flu, rather than the Strattera not working.


I've always been a bathtub girl, even before I got sick. But when visiting family when I first started on Strattera, I went from badly needing to use the shower stool we bought (vacation house had no adult-sized bathtub), to being able to easily shower standing up. No after-effects now from how showers or hot baths, aside from feeling too warm to use my electric blanket afterward. Before Strattera, I would often need to lie down after a hot bath - once I hurried myself, and started down the stairs too soon, and had to stop half-way and sit down to avoid falling.

The hardest part for me is to deal with being SO improved, but still being SO disabled. No longer limited by OI, but still badly limited by PEM. There's a tendency to focus on remaining limitations, so sometimes I have to remind myself how much worse it was overall 4 months ago.

Thanks. That sounds very encouraging. Of all the symptoms I have, mental fatigue is the one that has by far the biggest negative effect on my quality of life. If that could be alleviated then it would be a huge step forward.

So I'm very tempted to try this drug speculatively. It seems safe enough. I just wish there was some hard science I could present to my GP. I have found an online source but it's fairly expensive. Also, for some weird reason, it's much cheaper if you buy bigger doses. So I'll have to mess around with splitting up capsules or tablets to make it cost effective.

 

[Sushi]

Did you have symptoms only while you were in the shower, or did your symptoms come on afterwards? My problem is the aftereffects.

I had problems anytime I was standing, anywhere, anytime!

Sushi

 

[Sushi]

Thanks. That sounds very encouraging. Of all the symptoms I have, mental fatigue is the one that has by far the biggest negative effect on my quality of life. If that could be alleviated then it would be a huge step forward.

So I'm very tempted to try this drug speculatively. It seems safe enough. I just wish there was some hard science I could present to my GP. I have found an online source but it's fairly expensive. Also, for some weird reason, it's much cheaper if you buy bigger doses. So I'll have to mess around with splitting up capsules or tablets to make it cost effective.

Hi Orion,

If you do try it, my doc found and it was also my experience that I had to start extremely low and slow, dividing the lowest dose capsule into 3, and taking one every second or third day. It took over a month for me to feel comfortable with a whole capsule (of the lowest dose).

Even starting at really low dosing, I had side-effects at first, either super sleepy or wired, etc. They went away after a bit and then it was a very good drug for me--but yes, a very expensive drug.

Sushi

 

[Wayne]

I still crash from PEM at the drop of a hat, so it's having no impact on that. But I can generally read, play complicated computer games, have intelligent conversations, understand and speak in a language I'm learning, research stuff, etc. I sit up all day now, and rarely need to lie down in the middle of the day. So it's still a huge improvement, and has no signs of diminishing in effectiveness.

Hi Valentijn,

Thanks much for the updates. You seem to be saying your cognitive functioning is much improved so that you can do things you haven't been able to do in the past (?). Also, when you mention PEM, are you referring to crashing after just physical activity, and no longer after mental effort? -- Thanks, and am happy to hear you continue to have success with this.

Sushi, thanks for your updates as well, and for describing how important it was for you to start slowly and gradually allow your body the chance to adapt to it over a period of time.

Wayne

 

[Valentijn]

Thanks much for the updates. You seem to be saying your cognitive functioning is much improved so that you can do things you haven't been able to do in the past (?). Also, when you mention PEM, are you referring to crashing after just physical activity, and no longer after mental effort? -- Thanks, and am happy to hear you continue to have success with this.

Yes, in the past I would have huge trouble following simple conversations in Dutch after 15-30 minutes, couldn't read books, couldn't watch most TV programs, couldn't play games except very simple ones, couldn't do much research, etc. Now I can do all of that easily ... it feels about the same as it did before I got sick. Though I should note that I was able to do all of the above if laying down literally all day prior to starting Strattera - my cognitive problems seem to have been entirely a blood pressure/circulatory problem.

I only crash from physical exertion, though it's possible that in the past cognitive effort might have helped push me past the tipping point.

 

[orion]

I finally decided to bite the bullet and buy some Strattera from an online pharmacy (www.emedoutlet.com in case anyone's interested).

I had to buy the 60mg tablets because they're much cheaper than the 10mg ones. In fact the price/mg difference is ridiculous. So I'll have to find a way of splitting the tablets up.

It occurs to me that if they're water soluble, I could dissolve one of them in say a pint of water, and then drink 1/6 of the pint to get a 10mg dose. The only thing that concerns me about that approach is whether the active ingredient can survive being in a dissolved state for very long.

 

[Valentijn]

I had to buy the 60mg tablets because they're much cheaper than the 10mg ones. In fact the price/mg difference is ridiculous. So I'll have to find a way of splitting the tablets up.

Quite ... they charge the same per pill regardless of how many milligrams are inside of it

It occurs to me that if they're water soluble, I could dissolve one of them in say a pint of water, and then drink 1/6 of the pint to get a 10mg dose. The only thing that concerns me about that approach is whether the active ingredient can survive being in a dissolved state for very long.

Strattera is exceedingly bitter. Even the invisible trace of powder left on my divided capsules is quite strong and unpleasant. Unencapsulated Strattera might be unbearable.

I bought a bunch of #00 size empty gelatine capsules to split mine into - from amazon UK it looks like you can get a bag of 750 of them for a bit under 13 pounds. http://www.amazon.co.uk/Now-Foods-D...1_6?s=drugstore&ie=UTF8&qid=1361114656&sr=1-6

To split doses I put a teaspoon on a non-white/non-clear teacup saucer (so I can see any spilled powder), gently twist open a full Strattera capsule, and gently squeeze/massage both ends to get the powder out of the capsule and onto the teaspoon. The last bit might need to be tapped out of either end with one finger while holding that end with the other hand.

I lay out my 6 empty capsules, and take one at a time, and pull it apart. I hold both ends in my left hand (I'm right-handed) between my thumb and forefinger with the larger section closer to the tips of my fingers. Then I hold the teaspoon (still over the saucer) in my right hand and sort of scrape the pill along the teaspoon to get about one-sixth of the powder into the larger end of the capsule. Then I put down the teaspoon and close the capsule, pushing the top on until there's a bit of a clicking feeling as it locks into place.

It takes some practice to get used to how much is one-sixth, and with my first attempts I commonly had to remove a bit from overfilled capsules to get enough into the underfilled capsules.

Also, I had take it easy to start with due to some mood fluctuations. 1 dose per day might be a good idea for a week or so until you adapt to it, and please disregard any urges to run marathons that might occur. Strattera does not impact PEM thresholds, though it will make it easier to make plans that involve risk of triggering PEM

 

[Valentijn]

Well, I've run into a big problem. The drug is still working great, but I can't find a Dutch specialist willing to prescribe it. My GP has been very understanding and very active in helping me get to appropriate specialists, but so far it's been a dead-end involving neurologists fond of psychosomatic ME/CFS theories. And the GP doesn't feel that she knows enough about the drug or the disease to prescribe it herself.

So my fully licensed doctor back in the US wrote another prescription for me while I'm in specialist-limbo, and my mom filled the prescription and mailed it to me several weeks ago. Today I got a letter in the mail informing me that it's illegal to import prescription drugs and they've seized my Strattera and will destroy it. They informed me that they very generously will refrain from punishing me this time and sternly warned me not to try it again.

This is just nuts. Importing prescription drugs is completely legal if it's been prescribed to the recipient. And, as they would know from opening the shipping box to examine the contents, the bleeping prescription was pasted to the outside of the pill box!

I tried to make an appointment with my GP to at least get something in the short term while my medication was a week or two overdue (hadn't gotten the customs letter yet), but my GP is on vacation, so I have to see one I've only seen once or twice before. So not only does she probably know nothing about Strattera, she almost certainly knows nothing about ME/CFS. So I might not have a chance in hell of getting the prescription ordered by a Dutch doctor for a while.

My Dutch fiance is going to contact the post office to see WTF is going on, so maybe we have a chance of at least stopping them from destroying it. If it is destroyed, and the GP won't write a prescription, I'm officially screwed one week from today, when my current stash runs out.