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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Strattera (atomoxetine)

Ema

Senior Member
Messages
4,729
Location
Midwest USA
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.


I'm so sorry that you are having to deal with this bureaucratic nonsense nightmare along with everything else. I hope that your fiance will be able to help them see sense (or at least your prescription!) and get your medication to you.

I hope your GP will be understanding of your situation and help you out in the short term.

When I lived in Europe, my mother used to send me clothes and occasionally the pockets would contain items not strictly related to apparel. I wonder if this might be an option? Also, maybe FedEx over the mail system? Still customs but usually a different group...

I'll keep my fingers crossed for you and hope that next time you are warned by the authorities it is for actually doing something wrong. :)

Ema
 

sandgroper

Senior Member
Messages
104
Location
west australia
DOes it work best for postural hypotension? I have postural tachycardia and wonder if it would be too stimulating for me. i get wired on the lowest dose of tramadol. And can anyone tell me the difference between strattera and ritalin.
Thanks
 

Valentijn

Senior Member
Messages
15,786
DOes it work best for postural hypotension? I have postural tachycardia and wonder if it would be too stimulating for me. i get wired on the lowest dose of tramadol. And can anyone tell me the difference between strattera and ritalin.
I haven't heard of anyone taking it for POTS. But if you aren't getting a narrow pulse pressure, then I'm not sure how much it'll help. And high BP might be a side effect (which is one reason I take it).

Tramadol affects serotonin levels, which is something a lot of us react badly too (though some find it very helpful). Ritalin affects dopamine and norepinephrine, whereas strattera is much more focused on just norepinephrine.

I'm strongly in favor of getting neurotransmitters tested to see where the deficiencies are. Then you have a really good idea of where to start.

are your symptoms worse after exertion? i was wondering if doing more had any payback?
I get PEM, and it hasn't changed at all since starting Strattera.
 

SaraM

Senior Member
Messages
526
Val, this is my post on another thread. Please let me know what you think:

I have no Adhd symptom, and Excedrin which has caffeine( a stimulant) is the only thing that helps me with OI, and pain. I take one tablet, and I have no brain fog for hours. I am only worried about the side effects of aspirin and acetaminophen. I would like to try Strattera if it has fewer side effects .Coffee ,caffeine pills, aspirin or acetaminophen do nothing for me. Only Excedrin helps.
I have also tried L dopa(sinemet) with no effect.Only took it for 2 days. Somebody mentioned Albuterol for POTS, and I used it just a few minutes ago and I am not feeling any positive effect.
 

Valentijn

Senior Member
Messages
15,786
Val, this is my post on another thread. Please let me know what you think:
I have no Adhd symptom, and Excedrin which has caffeine( a stimulant) is the only thing that helps me with OI, and pain. I take one tablet, and I have no brain fog for hours. I am only worried about the side effects of aspirin and acetaminophen. I would like to try Strattera if it has fewer side effects .Coffee ,caffeine pills, aspirin or acetaminophen do nothing for me. Only Excedrin helps.
I have also tried L dopa(sinemet) with no effect.Only took it for 2 days. Somebody mentioned Albuterol for POTS, and I used it just a few minutes ago and I am not feeling any positive effect.

To quote wikipedia, "Consumption of caffeine antagonizes adenosine and increases activity in neurotransmission including acetylcholine, epinephrine, dopamine, serotonin, glutamate, norepinephrine, cortisol, and in higher doses, endorphins which explains the analgesic effect to some users."

So basically caffeine does a helluva lot, and narrowing it down to which is helping you could be very difficult. But the stimulation of glutamate activity might be a problem, since a lot of ME patients have issues related to excess glutamate. There's other things that might be off-setting whatever good effect you get from caffeine, since some ME patients have a bad reaction to increased serotonin activity, etc.

Have you had any testing of the listed substances that caffeine has an effect on? If so, that could help narrow things down quite a bit. Also, it's good to know if you have proper POTS with a big jump in heart rate, or high blood pressure, or low blood pressure, or low pulse pressure, or a combination of the above.
 

SaraM

Senior Member
Messages
526
Only a few of the listed substances. No jump in heart rate, high or low blood pressure.

glutamic acid low normal range ( excellent glutamine level)
cortisol 11-13 ( high normal range is 22)
no serotonin, but phosphatidyl serine borderline and low ( l serine did nothing)
acetylcholine high normal
 

Valentijn

Senior Member
Messages
15,786
Only a few of the listed substances. No jump in heart rate, high or low blood pressure.

You probably don't have POTS at all then - POTS would make your heart rate go much faster when going from laying or sitting to standing. Neurally Mediated Hypotension (NMH) might be possible, instead. It's much more delayed, and harder to detect. That's basically what I have, and my pulse pressure (difference between systolic and diastolic blood pressure) gets very small/narrow when I'm having bad OI symptoms, meaning not much blood volume is getting pushed around with each heart beat. After a while that results in feeling pretty crappy, which goes away after laying down for a while.

With these particular symptoms, Strattera or another norepinphrine reputake inhibitor (NRI) might help. With Strattera the results are pretty fast after taking the first dose - can feel it within half an hour if it's working. To be sure beforehand, you can get catecholamines (a type of neurotransmitters including dopamine, norepinephrine, and epinephrine) tested. There are proper blood tests for it from normal labs if you have a doctor to help you, and there's probably places that will run urine tests even without a doctor ordering it, though results might not be as accurate in urine.
 

sandgroper

Senior Member
Messages
104
Location
west australia
I haven't heard of anyone taking it for POTS. But if you aren't getting a narrow pulse pressure, then I'm not sure how much it'll help. And high BP might be a side effect (which is one reason I take it).

I do get a. narrowing of pulse pressure and bp can go up and down.....i am not sure if my body has adapted to respond with higher HR to stop fall in bp. On a test day on ritalin I got the narrowing of pulse pressure and fall in BP but i was actually able to do the standing test ...which for me needs to be 10 mins and is often too hard

Tramadol affects serotonin levels, which is something a lot of us react badly too (though some find it very helpful). Ritalin affects dopamine and norepinephrine, whereas strattera is much more focused on just norepinephrine.

strangely I react well to zolmitriptan which works on serotonin but also has strong vasoconstrictive properties.

I'm strongly in favor of getting neurotransmitters tested to see where the deficiencies are. Then you have a really good idea of where to start.

they did a catchechomine test when i was in hospital but of course I was laying down and it was only urine, i am not sure what they will do here in australia


I get PEM, and it hasn't changed at all since starting Strattera.

ok, so it has only helped with OI?
 

Valentijn

Senior Member
Messages
15,786
they did a catchechomine test when i was in hospital but of course I was laying down and it was only urine, i am not sure what they will do here in australia
I think I took a look at one of the major blood lab companies in australia once, and I'm pretty sure they had "catecholamine" blood testing offered. Sometimes it's just a matter of finding the right terminology :p
ok, so it has only helped with OI?
Yes, though that can include quite a few symptoms: orthostatic, cognitive, circulatory, etc.
 

Valentijn

Senior Member
Messages
15,786
My desperate last-hour plea for Strattera worked ... getting 10mg 3 times per day (90 pills for the month) from the pharmacy tomorrow. Insurance isn't covering it, though at least it's costing about 1/3 as much as in the US. 250 euros for 90 pills instead of 750+ dollars. And Dutch Insurance comes with a "own choice" fund of 300+ euros that will cover my first month's costs at least.

The doctor wasn't sure what would happen with the insurance, but the impression I got is that there are preferred drugs to use, and unless there's a good excuse (the preferred drugs didn't work, etc), the insurance won't cover the expensive ones. And like in the US a doctor can sign a piece of paper telling the insurance company that the drug is necessary, but in the Netherlands it sounds like a specialist has to do this, not a GP.

Hence my need to get to a specialist to get the prescription properly covered. Alternatively, I could look into other NRI's to see if there's something that's fully covered and give it a try to see if it works.
 

Valentijn

Senior Member
Messages
15,786
Finding a specialist is still getting nowhere. My GP has a list of Dutch docs that regularly prescribe Strattera though, so maybe I'll end up hooked up with one of those. Probably mostly psychiatrists though :p I got another refill in the mean time, this time 60mg so much, much cheaper. 40+ euros for a month instead of 250 euros.

Fiance and I did some research into pill splitting, since I need new empty gelatin capsules. There are basic little setups for making 20-30 pills at a time, but they require filling each capsule entirely. This -might- work if I use small enough capsules, but would have to find the perfect size for my dosing. Instead we're getting teeny-tiny measuring spoons so I can scoop into capsules more consistently as far as doses go. Teeny-tiny spoons might or might not be legal in the Netherlands - scientific ones can only be sent to businesses, and it is literally impossible to find the tiny measuring spoons here. One site had them listed but said "out of stock". So ordering stuff from far-far-away again.

My OI has been giving me problems the past several weeks. Basically getting narrow pulse pressure with tachycardia. I usually don't get tachycardia (100+ heart rate just while sitting still). But I think I have episodes of it periodically, though prior to starting Strattera, that meant laying down for weeks. This episode has meant mostly not much standing, though not too bad sitting, and sometimes laying down to get my heart rate down. But Strattera has still had a positive impact, though not as much of one as I get when not having tachycardia. Basically it would boost my pulse pressure from 20-25 to 35 or so - not great, but bearable. And my heart rate would go down after taking it, into the 80-85 range.

Anyhow, I finally had a great day yesterday. It was a Sunday, I woke up feeling good, and the local garden center was open so we went (sans scooter) and got 5 cyclamens and a zillion pansies. We also spent a lot of time looking at lattice trellises, and checking out their climbing roses (and photographing labels for further research), and looking for good bird seed (stuff wot birds want to eat and won't make weeds). So about 90 minutes slowly walking around the garden center, and I didn't feel crappy til we got to the checkout and were standing in line forever.

But I recovered after about half an hour of sitting at home, and with my fiance doing the leg-work I was able to pot the cyclamens, plant the pansies, and do some trimming. I took it easy and sat for most of the planting, but was still able to stand up easily for 30-45 minutes after all of that to do some stuff and supervise trimming out front. So it was a pretty amazing day, and I hope today is just as good! Slept well and just feeling normal muscle-soreness in the muscles I used so far. Fingers crossed :D
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
That is an astonishing amount of activity. Today I sat in a chair outside and drank a cup of coffee in the company of some violas--like pansies but smaller. Then I washed a load of laundry but didn't have the energy to carry it upstairs.

I've been checking out online pharmacies for a drug my insurance won't cover and have found some places that don't require a prescription, depending on the drug. India, for example, has a large pharma manufacturing industry and produces low-cost generics of nearly everything. I've read some good reviews although there are some obvious risks.

Irene
 

adreno

PR activist
Messages
4,841
Reboxetine might be an option if Strattera is expensive or hard to source. It's an NRI with pretty similar mechanism of action. It's half-life is longer, around 12 hours, so it might be possible to use a single dose in the morning.
 

Valentijn

Senior Member
Messages
15,786
Reboxetine might be an option if Strattera is expensive or hard to source. It's an NRI with pretty similar mechanism of action. It's half-life is longer, around 12 hours, so it might be possible to use a single dose in the morning.
Yeah, that's one I looked at, but it's not available in the Netherlands yet (or the US).

I searched through every NRI I could find listed, and the only other one available is Maprotiline, with a 1-2.5 day half-life, and weight gain, tachycardia, and orthostatic hypotension as side effects :eek: It also requires tapering to stop using it.
 

xks201

Senior Member
Messages
740
Valentijn or anyone else that has tried Strattera...have you tried Wellbutrin? Did it not do the same thing?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Valentijn or anyone else that has tried Strattera...have you tried Wellbutrin? Did it not do the same thing?


I am one of the ones who had success with Strattera and I also tried Wellbutrin. I tried Wellbutrin in hopes of raising dopamine (not really much symptom effect noticed and don't know if it really does affect dopamine) but it did not affect OI that I noticed. Whereas Strattera pretty much took it away. It doesn't seem to work for everyone though. :oops:

Sushi
 

Valentijn

Senior Member
Messages
15,786
Valentijn or anyone else that has tried Strattera...have you tried Wellbutrin? Did it not do the same thing?
I didn't try it - my dopamine levels are normal, and after my reaction to an SSRI I really wanted to try something very targeted on norepinephrine. Also the listed side-effects and complications and contraindications seem to increase exponentially when another mechanism of action is present in a drug. Plus Wellbutrin triggers the actual release of norepinephrine in addition to acting as an NRI, and I'm not sure if that's a good idea when my levels of it are so low - would I be using up the little reserves that I have?

So I basically prefer not to take risks or over complicate things, especially since I have something that works very well for me.

And due to a rather odd mixup with my prescription being refilled, I ended up with a 6 months' supply of Strattera and don't have to worry about supply issues for a while :D Basically the doctor initially prescribed 90 10mg capsules for the month, since I take 10mg three times per day. But that's 6 times as expensive as getting 15 60mg capsules. The pharmacist was happy to substitute the 60mg for the 10, except did the math wrong and we got 30 60mg capsules for the first prescription. Then during the refill process they somehow ended up with the initial amount of capsules and the altered dose - so 90 60mg capsules. My fiance mentioned it to them when he picked it up, but they weren't worried about it.

So I'm set!