Strattera (atomoxetine)

[Valentijn]

pretty impressed that this is getting rid of your OI. Have you tried wellbutrin? Did that help like this does with OI?

I haven't tried it, but it does sound interesting. My dopamine has tested perfectly normal however, so something targeted only at norepinephrine seems like something better for me to try. Strattera also has the advantage of being able to stop it immediately at any time without any side effects.

Strattera is also helping with things I didn't realize were part of OI (maybe they aren't, but are other effects of norepinephrine), but some of my leg muscles used to stop working after a bit of walking, and I'd get a very odd gait. That doesn't happen any more, and stairs are much easier as well.

 

[penny]

I haven't tried it, but it does sound interesting. My dopamine has tested perfectly normal however, so something targeted only at norepinephrine seems like something better for me to try. Strattera also the advantage of being able to stop it immediately at any time without any side effects.

Strattera is also helping with things I didn't realize were part of OI (maybe they aren't, but are other effects of norepinephrine), but some of my leg muscles used to stop working after a bit of walking, and I'd get a very odd gait. That doesn't happen any more, and stairs are much easier as well.

Thanks for sharing your experience with this Valentijn! I'm very interestedly following your progress and have added Strattera to my list of things to try in the future. Nothing interesting to add just wanted to say thanks and it's very exciting that you're having some success with this!

 

[Sushi]

I haven't tried it, but it does sound interesting. My dopamine has tested perfectly normal however, so something targeted only at norepinephrine seems like something better for me to try. Strattera also has the advantage of being able to stop it immediately at any time without any side effects.

Strattera is also helping with things I didn't realize were part of OI (maybe they aren't, but are other effects of norepinephrine), but some of my leg muscles used to stop working after a bit of walking, and I'd get a very odd gait. That doesn't happen any more, and stairs are much easier as well.

Hi Valentijn,

For me, also, strattera affected some unexpected things. One was cold hands and feet that would turn white when in cold water etc. For some reason, this benefit has continued even after stopping strattera. Something to do with the peripheral norepinephrine receptors which are said to be damaged in some of us? Also, I had fibro before taking it and this also disappeared and has not returned. Just shows us how much is not understood about this illness.

I also took Wellbutrin (low dose) for a while to prevent migraines. It didn't really seem to affect OI for me.

Sushi

 

[Valentijn]

Day 13
6:30 am - woke up
6:50 am - took 18mg Strattera
11:00am - grocery store, 20 minutes
noon - lunch, 60 minutes - up and down a steep hill
1:00 pm - nap - chills
2:05 pm - took 18mg Strattera
4:00 pm - feeling crappy, mild crash?
5:30 pm - cooking
8:00 pm - feeling a bit better

I've been extremely active the past two days, compared to "normal". And I think I've crashed a bit, though not badly. It reminds me more of what would happen when I first came down with ME, and I'd get home from class and curl up in bed with chills for an hour or two, then feel wiped out for the rest of the day.

Basically my crashes (and limits) seem to be closer to what they were when I first got sick, and could do a lot more and recover more quickly. For the near future I think I'll limit more intense activities (venturing out for a couple hours, walking slowly up hills) to every 2nd or 3rd day, instead of daily.

So now I know where my new limits are. It's a little depressing to still have them, but it's great that I can do so much more so far. I can handle stuff around the house easily, and even get out of the house without problems, so long as I don't push the PEM aspect.

 

[Valentijn]

Day 14
6:55 am - woke up
7:00 am - took 18mg Strattera
10:00am - road trip (2 hours), ferry (1 hour), stairs
1:00 pm - took 18mg Strattera
1:15 pm - ate lunch out, 40 minutes
3:00 pm - nap
4:00 pm - bath
6:00 pm - ate dinner at aunt's (stairs)
8:00 pm - bed, exhausted

Day 15
7:15 am - woke up
7:30 am - took 18mg Strattera
9:00 am - performed surgery on broken printer (90 minutes, stairs)
noon - troubleshooting malfunctioning cable HD/DVR box (stairs x 3)
1:45 pm - took 18mg Strattera
4:00 pm - shopping trip for new printer (30 minutes, stairs)
8:00 pm - bed, exhausted

I went up and down the stairs about 7 times yesterday (day 15). This would've killed me if I'd tried it a couple weeks ago, even with lots of resting between. I have been pushing things a bit more than I should, but I haven't had a proper crash from it, just exhaustion - like a healthy person would feel after a day of moving house. Today I'm off to visit my naturopathic doctor again, for him to see how things are going with the Strattera, to get another B12/folate shot, and hopefully to get some test results.

 

[Valentijn]

Day 16
6:30 am - woke up
7:30 am - took 18mg Strattera
9:30 am - doctor visit (60 minutes)
10:30am - supplement and drug stores (30 minutes)
11:00am - lunch at restaurant (30 minutes)
noon - installed printer, fixed computer
evening - felt icky again

Okay, the pharmacy didn't have ANY Strattera in stock, so I didn't get the prescription refilled until about 15 minutes ago. So yesterday evening and this morning sucked

I got the 40mg capsules, because the price per 40mg capsule is only slightly more than per 18mg capsule. I have no insurance here in the US, so it would've been $480 for a month's worth of 18mg capsules (twice per day). By getting the 40mg capsules, we're paying $265 for a month's worth of 40mg capsules.

We stopped by a supplements store yesterday and picked up a big bag of empty gelatin capsules - 500 for about $7.

When I got my 40mg Strattera capsules I gently twisted and pulled the top off of one. It was EXTREMELY full with the white powder, so I set down the top (smaller) part while pouring the bottom half into two of the empty capsules. When the bottom of the Strattera capsule was empty, I emptied the top part of the Strattera capsule into the two previously-empty capsules. Then I made sure the two capsules were fairly equal, and put their caps on them.

I didn't try to keep a dose in the Strattera capsule casing because 1) it was too tiny to easily stuff even half its contents back in and 2) it would have made it hard to split the doses evenly, since it's a different size and not transparent at all.

One split dose looked slightly larger than the other, so when that happens I'll probably take the bigger dose in the morning. I also might try 10mg doses at some point, to see if I still get the full effects.

If/when I can get it prescribed in the Netherlands, I won't have to mess with splitting it to save a couple hundred bucks, since it'll be free

 

[Valentijn]

I did the math on what Strattera is costing per milligram. At the 40mg dose you get 4.53 milligrams per dollar. At the 18mg dose you get 2.25 milligrams per dollar. So the 18mg dose really does cost twice as much

 

[Valentijn]

Something I forgot to mention about the doctor visit: Dr Deichert checked my laying and sitting blood pressure at the followup when I'd been on Strattera for about two weeks. My pulse pressure wasn't up to "normal" but he remarked that my systolic was rising with my diastolic now when I sat up, unlike the previous visit where only the diastolic rose.

I think my pulse was faster too. 105-110 right after sitting up and a minute or two later. I -think- it was 80-90 previously.

I'm feeling slightly over-stimulated on the 20mg dose. Maybe that'll bug me less if I become more active, or I might try splitting my 40mg dose into thirds or quarters (13mg or 10mg).

 

[Valentijn]

Yesterday I cut my dose down to 10mg twice per day, which seems a lot nicer. I don't feel over-stimulated now, but so far it seems to have the same effect for letting me stay upright. Anyhow, I survived 4 hours of travel and 7 flights of stairs (spread out over those 4 hours) pretty well. I spent three hours in the car sitting with my feet down, and didn't feel like I needed to put them up at all

We're out of the city now, so I think it'll be a bit easier for me to plan my activities and ease into becoming more active - back in Seattle we were running around somewhere every day or two, which made it hard to gauge things or avoid pushing more than I was comfortable with. So short walks will be doable now, and maybe grocery trips too. I really want to get a better feel for my limits now.

 

[Sushi]

Yesterday I cut my dose down to 10mg twice per day, which seems a lot nicer. I don't feel over-stimulated now, but so far it seems to have the same effect for letting me stay upright....

I just came across my old bottle of strattera, and guess what? I was only taking 10 mg twice a day too, and that worked very well for me. I had remembered 20, but I guess that was the total for the day.

Sushi

 

[taniaaust1]

Sounds great . I really wish my Florinef would work as well as the straterra is working for you. I have high noradrenaline rather then low, so I guess that puts straterra for me out.

 

[Sushi]

Sounds great . I really wish my Florinef would work as well as the straterra is working for you. I have high noradrenaline rather then low, so I guess that puts straterra for me out.

Not necessarily, Tania. They usually measure it in the urine which means that you are dumping a lot out. You may not have enough available in the synapses.

Sushi

 

[Valentijn]

I was going based on a blood platelet test, which gives a look at the levels over the past several months. The substances before and after norepinephrine (dopamine and epinephrine) were both normal or high-normal (which doesn't make much sense), so peeing out too much norepinephrine is certainly a possibility.

 

[taniaaust1]

Not necessarily, Tania. They usually measure it in the urine which means that you are dumping a lot out. You may not have enough available in the synapses.

Sushi

oh , thanks for that, yeah doctors have always measure mine via urine. umm now wonder if Im doing the right thing by currently trialilng the noradrenaline lowering drug Im on.

I only can hope Im currently on the right track as it is well known that many POTS people do have a high noradrenaline level, I think the fact I also get orthostatic hypertension strongly supports that probably do have high noradrenaline (rather then just releasing too much out throu urine).

Fingers crossed that Im doing the right thing. **concerned some thou** The nor adrenaline drug certainly hasnt helped my POTS (thou it "appears" to maybe be helping the orthostatic hypertension side of things).

 

[tommy22]

Hello, i'm new here and not much experienced on forums and my englisch is not so good, i'm sorry for that. I'm a women 34 years old from the Netherlands and i would like to say that i have a lot of advance in de medicine Ritalin.
I believe it is almost the same as strattera, but when i see your experience valentijn i regonize a lot of it. And sometimes when i am too also over my limit, so when i did too much de days before, the energy is not there and it only helps me with the PEM So instead of lying the hole day i can get up and sit up and just be there that day, but i'm not active doing things.

So i really have benefit from this medicine. Instead of lying sick in bed or on the couch i have a day of less energy and when i have good days i get out and do some shopping or visiting.
That is making my live so much better that i want to share my story with you all.

When i used the Ritalin alone i was a bit stressy. I have a big history of AD medicine (Anti Depression) because i first though it was just the depression that was making me so tired. I did not believe in CFS/ME, but over time i put two and two toghether and i think that i have CFS. But also have depressive symptoms, but yeay, you got no live to be glad about, so the depressive feelings are maybe the cause of my CFS.
So now i have a cocktail that i can live with and can get a little live, i refused to stay on the couch so i did a lot of experimental combo's. I'm now on 75 mg Effexor, 1 mg Risperdal at night and in de day i take 6 times a 10 mg of Ritalin to get me through the day. And it's liveble. So i wanted to tell my story here, because i believe that this type of medicine maybe can help other people.
I don't know if it is a good medicine for the long term, but maybe when i did not met this medicine i would have given up live, because it is really heard to live with.

Tommy22

 

[tommy22]

Sorry POTS is PEM in the message above. And of course the Ritalin helps me with the fatigue an cognitive problems.

 

[taniaaust1]

Sorry POTS is PEM in the message above. And of course the Ritalin helps me with the fatigue an cognitive problems.

Hi Tommy. Welcome .
You can correct a post if you wish by the edit at the bottom of your post
Do you have POTS? or just PEM?

If you havent done already.. I suggest for you to cut and paste your intro part of your post into the introduction subforum part of these forums so people can welcome you to the site http://forums.phoenixrising.me/index.php?forums/introduce-yourself.35/
. (if people do that here we are going off topic for this thread).

 

[tommy22]

Thank you Tania for this reply. I'm sorry that i did this here. Later when I read it I felt stupid that I just talked about myself here. I messed up your name with that from Valentijn, I changed it. I'm curious how the strattera will help Valentijn in the future and i would love to read more. I think i was glad that someone was writing about the positive effects of these kinds of medicine, because i do not read a lot of positive reactions.
I will introduce myself in the link you put down for me, thank you.
I changed it in PEM. I only have PEM.

 

[Sushi]

Hello, i'm new here and not much experienced on forums and my englisch is not so good, i'm sorry for that. I'm a women 34 years old from the Netherlands and i would like to say that i have a lot of advance in de medicine Ritalin.
I believe it is almost the same as strattera, but when i see your experience valentijn i regonize a lot of it. And sometimes when i am too also over my limit, so when i did too much de days before, the energy is not there and it only helps me with the PEM So instead of lying the hole day i can get up and sit up and just be there that day, but i'm not active doing things.
...

Hi Tommy,

Welcome to the forum.

Ritalin and Strattera work in different ways--Strattera is a norepinephrine re-uptake inhibitor.

If you do well with ritalin, have you ever tried adderall? It is the same type of drug as ritalin but has 4 types of amphetamine salts instead of one (I think ritalin has only one). What this does, is raise your energy slowly and lower it slowly because the 4 types of amphetamines have different half lives--so you don't suddenly crash.

Best wishes,
Sushi

 

[xks201]

if you take adderall take the timed release XR version otherwise you will just crash in 2 hours. vyvanse is even a better timed release formula in my opinion.