View Full Version : Post about desoxyn and all other resources exhausted


maysarieltiff
07-08-16, 12:24 AM
Hi!

I was diagnosed with ADD about two years ago, after a long time struggling with focus and concentration. I would go start a task, leave in the middle, go start another, go back to the first one, start a third, etc. That was just the beginning lol. I had other issues, and I finally had insurance and went to my family doctor (once I had one) and said I thought I was crazy! and had bi-polar and ADD. The jury is out on the bi-polar, but after tests possible bi-polar and the TOVA test showed ADD. I also have generalized anxiety and depression.

I was prescribed a few different stimulants, my psychiatrist is pretty cool. I also saw a psychologist for counseling. I still see both. I have tried vyvanse, adderall, strattera, and now I am on dexedrine. I have had gene sight testing and my genes say that I should not take ritalin or those drugs since they could build up in my system and have a reduced effectiveness. I also have an increased metabolism at 2D6...I believe? that is it. I would have to pull out the paperwork.

Either way, I am not feeling effects of the stimulants. The most I felt was the Strattera, and that was a shaky feeling which I did not like. I do not get a "high" which I am not looking for anyway. I want to be able to focus on my school work and study. I am a nursing student. I asked to take the TOVA test a second time, when I was on the vyvanse AND strattera because I told them I was not feeling the symptoms of ADD getting much better, and the test showed a small improvement, but not much. So they believe me, but my Dr. is at a loss.

Right now, I am at 15mg of dexedrine spansules 2x a day and 10mg of dexedrine IR 2x a day. My Dr does not want to prescribe me any more than that. He also does not want to prescribe desoxyn. I have asked for Focalin, after reading posts on here, yet it is in the same family as Ritalin, which is not compatible with my genetics and he says I cannot argue with that.

I am trying to put together a case for desoxyn, which will be absorbed better, which will hopefully work better at a smaller and more acceptable dose, as apposed to the dexedrine I am on now, which I feel just needs to be increased but because he won't and I am sure my insurance won't pay for it anyway, doesn't really matter.

Thoughts?

Thank you so much for reading/listening!!!!

maysarieltiff
07-08-16, 01:15 AM
Also I am on Lamotrigine, and Ability for Bipolar, Topirimate for headaches, Lisiniprol/hydrochlorothiazide for blood pressure and wellbutrin for depression.

maysarieltiff
07-08-16, 02:10 AM
I also have not asked him why he is hesitant to prescribe it. He has brought it up, so perhaps he could be convinced. i will ask my next appointment. I have a few ideas though lol. I guess aside from Focalin which is not compatible with my body I am not sure where else to go?

Thanks

sarahsweets
07-08-16, 04:22 AM
Most doctors are afraid to prescribe it because its called 'methamphetamine'.

aeon
07-08-16, 04:28 AM
My doc has no issues with it and wrote me a prescription to try it,
but no pharmacy in the area was interested in ordering it.


Cheers,
Ian

C15H25N3O
07-22-16, 06:50 PM
Genetic test are not standard and as science is not free of errors it could be wrong.
I think you should try another physician and/or try any off-label meds what ever it is.

Did you self-medicate? What was your self-therapy for compensation? I am convinced
self-medication and self-therapy tell more about your nature and personality than any
genetic tests. A big problem is that medicine prohibits self-medication although it some
times only must be supported to have a healthier medication. And there is no med that
can replace self-therapy as it is your life. If you have the option try everything you can
but care for your personality because meds can violate it heavy – even more than self-
medication in some cases.

maysarieltiff
07-26-16, 11:17 PM
Genetic test are not standard and as science is not free of errors it could be wrong.
I think you should try another physician and/or try any off-label meds what ever it is.

Did you self-medicate? What was your self-therapy for compensation? I am convinced
self-medication and self-therapy tell more about your nature and personality than any
genetic tests. A big problem is that medicine prohibits self-medication although it some
times only must be supported to have a healthier medication. And there is no med that
can replace self-therapy as it is your life. If you have the option try everything you can
but care for your personality because meds can violate it heavy – even more than self-
medication in some cases.

Done more research on genetic testing. I have multiple alleles on 2D6. either two or four. from what I have found, if I have multiple on four, which is a non functioning one, i would have a poor metabolism, resulting in a lot of side effects and lower dosages. If I have multiple on 2, I am an ultrafast metabolizer, which I figured, and my blood serum levels just aren't reaching the amount for there to be therapeutic value.

50mg a day of dextroamphetamine and I have no side effects, I have no "rush" I have nothing that I feel is advantageous other than the fact that it maybe speeds up my metabolism a bit, which has always seemed a bit slow.

The only medication that I have taken that has improved my focus, made me concentrate for an extended period of time, and given me energy has been hydrocodone. I told my doc that, knowing he would never prescribe me it for ADD and sure enough he said, no way.

I am beyond frustrated. I know there must be something to quiet the repetitive songs in my head, I know there must be something to help me read my textbooks without wandering off 27 times an hour. Can I please just finish laundry or the dishes without starting another task? Can I take a test and actually have the patience to go back and recheck my answers?

I am armed with information about desoxyn (very little, only things I find really are personal experiences with ADD) and about ultra rapid metabolizers for my appointment on the eighth.

Also, I called and requested a change from the XR I take (30mg) so I am taking all IR and the message back I got was, inadvisable since that would be over recommended dosage.

My pharmacist today said I was taking three medications that increase heart rate and to watch for signs of rapid heartbeat, pulse, anxiety. I told her I do not ever experience any of these, but I really appreciate the advice. I am even on Nuvigil 150mg now, at my request because I read it might help with alertness that I struggle with also. It doesn't seem to help.

Thank you for the responses, I will continue to research and see what else I might be able to find out. Oh also, I have an issue with serotonin according to my test results.

Thanks,
Amy

maysarieltiff
07-26-16, 11:57 PM
Also, regarding self-medication, I have been able to focus for periods of time while drinking wine. Not a little, more than average amounts.

For instance, I can easily drink two bottles of regular sized wine and be barely buzzed.

I do not want, or feel I should have to do this in order to focus on studying. Yes, it has helped, a BIT but the amount I have to drink and the negative effects are not worth it. I wonder if alcohol is metabolized at 2D6 as well.

C15H25N3O
07-27-16, 12:22 AM
I dont wanna interrupt your focus on your DNA, but ...
... do the results match your personal experiences before any diagnosis of ADHD and starting to medicate it?

I cannot believe science can measure personalities and reactions on substances which depend on personalities,
but science can use the genetic test to underline their prescriptions while forgetting the paradoxons.
If these results were correct you would already have been given the perfect medication but it is still 100% ADHD
the way you are researching, my doc would say. If you have the best available med for your personality you will
stop researching and thinking about other medications. Pure happiness, full functioning and living life in euphoria.

maysarieltiff
07-27-16, 12:33 AM
Yes. I guess I Started to medicate when I was in college the first time, years ago. I could coast on my intelligence and, honestly, common sense. Then when it started to get difficult and I had to study I could not for the life of me focus on anything for longer than...well like ten minutes. When I drink, I calm down and it seems to let me stop for a minute and shut my brain off and focus on one thing. Its sporadical, and not entirely effective. And not practical.

It of course does nothing for memory or any kind of retention (i imagine, but I guess I'm not positive).

I have low energy, I sleep horrible, I can't focus or even concentrate for longer than ten minutes.

There has to be some reason, and my genetics seem to point towards something...so perhaps I am clinging to that because I have no where else to go.

Thanks for responding :)

Amy

maysarieltiff
07-27-16, 12:49 AM
The meds are not working though so...how do I live life in "euphoria"? Should I trust the doc when I was the one who brought up nuvigil and he said to me wow I am not that smart?

Thank you for the responses :)

Amy

sarahsweets
07-27-16, 02:40 AM
The meds are not working though so...how do I live life in "euphoria"? Should I trust the doc when I was the one who brought up nuvigil and he said to me wow I am not that smart?

Thank you for the responses :)

Amy
I just saw this thread. When you say the meds are not working, what do you mean?

maysarieltiff
07-27-16, 06:38 AM
They do not seem to be helping me with focus or concentration. I have read so many posts on how these medications have greatly improved the lives of people, yet it seems they are not serving their purpose for me.

I start nursing school in the fall and the expectations of my education are only going to increase. I don't have enough hours in the day to study so much. Because when I do study so much of it is unproductive that I spend half the time trying to refocus and organize my thoughts, or reading something multiple times because my mind has wandered while reading.

Am I expecting too much? :confused:

Thank you !

Little Missy
07-27-16, 07:50 AM
Do you have to take large amounts of Wellbutrin and Abilify also?

maysarieltiff
07-27-16, 08:12 AM
I was on 300mg of Wellbutrin, which worked much better. I am not sure I am feeling any effects of it anymore. I am on 150mg now, because my doctor is concerned because of all the meds I am on and the combination of them.

He has me on 10mg of Abilify at the moment. I am not sure how much therapeutic value it has given me.

It feels like I take a lot of meds without much result.

Little Missy
07-27-16, 09:18 AM
Also I am on Lamotrigine, and Ability for Bipolar, Topirimate for headaches, Lisiniprol/hydrochlorothiazide for blood pressure and wellbutrin for depression.

Are you still taking all of these medications along with the Dexedrine?

sarahsweets
07-27-16, 09:57 AM
They do not seem to be helping me with focus or concentration. I have read so many posts on how these medications have greatly improved the lives of people, yet it seems they are not serving their purpose for me.

I start nursing school in the fall and the expectations of my education are only going to increase. I don't have enough hours in the day to study so much. Because when I do study so much of it is unproductive that I spend half the time trying to refocus and organize my thoughts, or reading something multiple times because my mind has wandered while reading.

Am I expecting too much? :confused:

Thank you !

I guess what Im wondering is are you getting absolutely no help from your meds? Like is it like you never took anything? I am just looking to see what meds/what dosesyou have tried because dosing is very particular.

maysarieltiff
07-27-16, 05:30 PM
I feel as if I am getting some help, but it feels like there is just something...more, that can be done. It is as if I am on the brink of something but not quite there.

I started on Vyvanse, and was increased to 70mg, with no effect. I tried some samples of Strattera my psychiatrist had on top of that, and when I took the second TOVA test (the first one helped diagnose me with ADD), there was marginal improvement. However, once I started the Strattera, I felt off, and it gave me the shakes. It seemed to make me self-conscious.

Have tried Adderall at the maximum dose allowed according to my doctor, and that didn't seem to work either. Im sorry, for some reason I can't remember what that dose was or if they were IR or XR.

Switch to the dextroamphetamine, which is my doctors last offering of help. He seems willing to help in any way he can, but he basically told me this is the best that he can do for me. Which is why I am trying to get as much information as I can before my next appointment, as I believe that I should advocate for myself.

Because my Genesight tests said that I would have reduced response to Ritalin or Focalin he has not prescribed me that, so I have no idea if those medications would assist or not. Same with the Clonidine and Guanfacine.

I was told to take the dextroamphetamine 15mg XR with the 10mg IR in the morning, then the other two in the early afternoon. After reporting that I needed a change, he said I could manage my meds and the timing however I want. I tried taking both XR at once, and i feel the XR do nothing for me, if anything, it is the IR that are helping a bit. I have tried taking both IR at the same time, with what feels like some help, but very short lived. It feels like I would have to take two of them every couple hours all day to get benefit.

I also tried taking three of them, and finally all four at once. I felt no different from taking the two IR at the same time. I probably shouldn't have taken them at once without my Dr.s approval, but I guess I was just frustrated and wanting to know if it would help.

I would like to try more of the IR at the same time, just to see if it is a dosage issue, but I am reluctant to do so without a doctor's release. However, my doctor is concerned (justifiably) about the meds I am on and the increased risk of stroke, heart attack, etc. while I know my body and I know I am not reacting to these meds negatively. (BP controlled, on med, and pulse normal).

If I am an ultra rapid metabolizer of these medications, every piece of literature I found says that normal doses will not work, or provide any therapeutic value. Basically I have information that says I am either a poor metabolizer or an ultra rapid one, and since I do not have a lot of side effects, it would make more sense that I am the latter.

WOW I have typed a lot. Sorry for boring you with all of that, it is nice to be able to vent to others who experience some of the same issues that I do. Thank you for all of the responses.

Amy

maysarieltiff
07-27-16, 05:31 PM
Yes, I am still on all of those medications. In addition to Nuvigil now.

Also, I asked my Dr. if the topirimate might add to the "brain fog" and he said yes, and he will take me off of it if he needs to. I worry the headaches will come back, however.