View Full Version : Not sure how to ask


aneese
10-19-10, 03:27 AM
I'm 36 and have been misdiagnosed with Bipolar2 since I was 15.
I've spent all those years trying numerous antipsychotics, mood stabilizers, antidepressants, even anti-seizure medications, many more than once, with no positive results at all.
After all these years of trial and error, I finally got discouraged enough to quit trying. I started thinking this is just the way I am and maybe this -is- the normal me.
My mother told me to try her psychiatrist last year, which I did, and was diagnosed with ADD/depression. Unfortunately I was unable to afford being able to see him.
I went to my primary care physician and told him what my symptoms were, and we talked for a while, and he agreed with the diagnosis of ADD/depression.
He put me on Adderall IR 10mg 2x a day and I'm supposed to see him this Friday.

A little about my history.
Since I was about 15, I also started sleeping a LOT longer and when I WAS able to push myself out of the bed I still felt sleepy all day. I'm still going through that to this day.
When the doctor asked how my sleeping was, I told him it varied, but didn't go into any detail because there's just no way I can afford a sleep study, and without a sleep study I don't see how I'd be able to be diagnosed.
Enough about that.

When I about 16, I tried two drugs, cocaine and "ice".
Cocaine I tried twice. Once, because I'd never tried it before and the second time purely out of peer pressure.
The first time, we did line after line for a while and you could tell they were all wired out of their minds and talking so fast you could barely understand them.
I didn't feel any of this. And looking back, with what I know now about my ADD symptoms, it didn't help -any- of them.
In addition, I didn't feel wired or "high", I didn't have any more energy than normal, and I was still anti-social.
I just sat on the couch the entire time and finally made a comment to my friend that this just wasn't working and I left for home and went to bed.
The second time, a friend offered for me to stay at her house for the night, and she had some friends over. I came in to the kitchen where they were and saw the cocaine on the table. She offered me a line and at 16 I just wanted to fit in, not to mention I felt like it'd be disrespectful not to, since she was allowing me a place to stay for the night.
I did the line, went back into the living room and fell asleep.

"Ice" I tried once at a friend's house.
Again, like the cocaine, we did quite a few lines that day. And again, everyone reacted to it like they did on the cocaine.
The guy who had it and I stayed inside while everyone was in and out, in and out.
Again, I didn't feel "high" or wired, but there were distinct differences in my reaction to it.
I avoid talking to people as much as possible, even on the phone, because I blank out, I forget words, I get distracted, my mind wanders, I can't think of anything to say, and I tend to lose my train of thought. But me and him actually started talking.
I was awake, not sleepy, clearheaded (no brain fog), my depression felt lifted. Even though a dozen people were running around and obviously didn't know how loud they were talking, I wasn't distracted. I was able to keep eye contact, hold attention. I'm generally a very anxious person, but I wasn't anxious at all, I was actually quite calm and relaxed.
I didn't feel GREAT, I just felt better. It was nice having my symptoms relieved for a while. And I had no problem sleeping.
He even mentioned something about it didn't seem like I got anything from it and offered me another line.
But after my other experiences, I knew it still wouldn't make me feel the way the others were feeling, so I just refused.

My short term memory seems pretty much none existant most of the time, but I do still have good long term memory. I remember things like that as if it just happened yesterday.

That ends the history.

The weird thing is that when I did the cocaine, both times at night, I felt nothing but incredibly sleepy. And since I was a small child, according to my mother, I was always a "night person". And as far back as I can remember and up to the present, I always have been.
The "ice" I did during the day, and that's when I'm always the most sleepiest. I have to really fight to not take naps during the day, and when I do take naps they aren't one hour naps, they're 3-4 hours and I still wake up feeling super groggy and have a hard time getting up.
But that day I did it, the brain fog that seems to keep me so sleepy actually went away, along with the other numerous symptoms.
I'm not sure why I had such a different experiences with the two. As far as I know, they're basically the same thing.

I really had high hopes that the Adderall would help aleviate even some of my symptoms.
The symptoms I have, have caused a fair amount of damage in my life, socially, in relationships, school, past work. I'm not blaming them as the cause, but they have played a big part.
The Adderall is treating me like the cocaine did in the past.
Even though it seems to be helping slightly with the anxiety (still hard to tell), that's all it's doing.
I still have the ADD and depression symptoms that aren't being relieved at all, and I'm staying incredibly sleepy and in that "fog".
Just overall feel crappy in general.

After 21 years of month to month trial and error with medications, I'm really not wanting to go down that road again if I can help it. So I started doing some digging around about what stimulant for ADD would be similar to "ice" since it seemed to relieve my symptoms with ADD, depression, and the sleepy/fog issue the best, and ended up with Desoxyn.

But even though I've had the best results with that "type" of drug, I'm still very nervous about asking him if we could try it, even for a week.
From what I've read, some doctors don't know much about it, some don't know anything, and others are leery about it, while there's a few others that don't have a problem with trying it.

I've read that the side effects aren't as bad as most ADD medications, even the rapid heartbeat.
"very minimal PNS stimulation i.e. blood pressure, heart rate, body temp etc."
Not sure if there's any other benefits over other other medications.

I don't know. Does anyone have any suggestions on how I might go about asking to just try this?

avareyne
10-20-10, 02:12 PM
God, I swear I have misdiagnosed bipolar. No med ever did anything until I started being treated for ADHD.

What dose of Adderall are you on? It could be that it is just too low. If it isn't effecting you otherwise, I'd say try a higher dose. I hope you are on IR, XR made me feel like crap. Turned into a couch potato. Well, Adderall seems to be making me a couch potato in general lately.

The biggest benefit I saw was that irritability was not a listed side effect and that it didn't have a long half life either, that is how I ended up getting the script for it. Just by giving him all the info and reasoning as to why. When Adderall even starts to wear off, I get crabby. But I will say this, when I don't take Lamictal with the Adderall, it doesn't happen, so who knows.

aneese
10-20-10, 05:13 PM
avareyne, I can't honestly say whether you are or aren't being misdiagnosed, but you very well might be.
Quite a few of the symptoms of Bipolar are very similar, some even seem identical, to ADD/ADHD.

No matter where I'd go to, the first question they'd ask me is what I've been treated for in the past.
I got to the point where I hated having to say because it always seemed to help reinforce their decision to try treating me for Bipolar again.
The question I hated the most was when they'd ask me what medications I've tried... trying to remember them all seemed to take up most of my time with them.

My mother's psych is the first one I've actually had a chance to spend a full hour with.
When he asked a question like have I ever stayed up for days at a time, and I'd say yes, he'd dig for details and ask for how long and if there was a reason for it, etc. No other psych ever did that, and it seems they'd take my "yes" response as a sign of Bipolar.
I was up for two days. I had a website to complete for someone. I sleep so much and procrastinate doing things until the last minute. The only things I'd get up to do was go to the bathroom and get a drink. I was still as lethargic as ever, but I just zoned in on completing the website. I used to love creating websites.
My fiance even told me he said goodnight and I never heard him.

It'd have been done in a day, but instead of being able to focus on the content for the site, I'd get distracted and started focusing on the colors and graphics.
That's always been one of my major problems. I tend to be overly focused on details that are trivial, but can't focus at all on anything that really matters.

Anyway, I'm taking Adderall IR 10mg 2x a day.
I thought maybe I was taking it too far apart. I started off taking it 5 hours apart.
So I started decreasing the amount of time between the two doses by an hour the first 2 days, and 30 minutes after that.
I'm now taking the Adderall 2x a day, 2 hours apart.
I don't want to take them any closer without talking to the doctor first.

The thing I've noticed since decreasing the time between doses, is anxiety has decreased some, but the Adderall has made me feel "crappy", I'm still just as sleepy, my eyes are drier, none of the ADD or depression symptoms are being relieved, it almost seems like I have less of a desire to do anything, go anywhere, or talk to anyone.
I've actually had the lack of interest and desire for those things for ages, but it seems to be worse now.
I'm wondering if it seems worse because I just have that overall "crappy" feeling.

I've read somewhere about someone feeling "crappy" on Adderall, and someone mentioned the levoamphetamine in it as the cause of it for some people.
I was hoping to find out where I read it so I could show my doctor, but I'll just ask about it in the Adderall forum.

I've actually wanted to stop taking it, but was in hopes that it was just my body adjusting to it. Doesn't seem that way though.

I tried Lamictal for Bipolar before I was diagnosed with ADD. I REALLY wish I had an answer for you.
Lamictal was just another med that didn't help at all for me. Not to mention the long list of side effects scared the hell out me!

Anyway, thanks for the reply, ava.
Creating this thread was actually rather pointless though.
Even though my gut tells me this most likely would've been the medicine to actually help, I ended up seeing the cost of it...
Since my fiance became unemployed, I ended up losing my health insurance. There's just no way I'd be able to afford it unfortunately.

Scooter77
10-20-10, 05:45 PM
Maybe you should speak to your dr about treating the depression first? It can greatly exacerbate ADHD symptoms and reduce the effectiveness of ADHD meds.
I'm just thinking if you get that under control then maybe you'll find it easier to sort out the ADHD side.

avareyne
10-20-10, 07:11 PM
Well, it is up to you. I would ask for a re-evaluation. This is what I am doing. I have bipolar and adhd listed. My doc is aware that the bipolar diagnosis is from when I was 12, when they were waffling between that and ADHD, so it might help if you ever had it considered.

The dose is low, IMO. But I know what you mean about how it feels, that is how I started feeling. I take it and end up so dang sleepy now, I feel like crap all the time. I can't wait till this gets filled to be honest. But I would play their game, ask for an increase, maybe try 1 other med, and then bring up this with dexedrine and explain reasoning for both. A list of pro's and con's would help. I had to explain my reasoning, and it all was valid, the dr knew it and so I think that helps a lot. Not all these meds are the same, a lot are similar. I need a specific half life and irritability as a side effect to be eliminated, that lead straight to Desoxyn.

But I know how you feel. I am still on Adderall, 30 2x and a 10. I am a couch potato and it takes me ages to want to do something. I have been putting things off for days! So I hope you get a change, something, anything soon, because this feeling really SUCKS.

Have you applied for medicaid? I receive medicaid. I am not 'poor' but my son and I qualify. If you and your fiance aren't married then you may have a chance. With a PA they should cover it. If I didn't have medicaid, I wouldn't be on anything. The provigil I am on is $1200 alone. So I would give it a shot. I don't know who makes it either but maybe they have patient assistance. Either way, finding a different med, perhaps with patient assistance available if you can't get medicaid is going to be the best for you. That is my opinion.

If you think the part of the Adderall is making you feel bad is Levo, then try Dexedrine, there is a generic.

Scooter: I would say, perhaps her depression is caused by her untreated ADD. And these meds are able to be used off label in depression so I don't understand what you are getting at.

aneese
10-20-10, 08:43 PM
Thanks Scooter.

The only problem is that along with trying to be treated all these years for Bipolar, at the same time I was also tried on numerous anti-depressants with no relief, even seeing a counselor for one-on-one sessions and group therapy.

I get depressed about normal things just like anyone else, and just like many others, it comes and goes.
The difference is, when I don't feel depressed, I don't feel sad, but I still don't feel happy or even good, or even have the same interest I used to have with the one or two things I used to enjoy.

But you have to think, I spent a good amount of my life diagnosed with something I didn't have and feeling that nothing would ever help. Dealing with ADD symptoms can be bad enough for people even when they know they have it.
When you have no idea you have it, it's a complete nightmare. I couldn't understand why I would do the things I do, act or react the way I do, have such a problem with things that a lot of others never did. I never knew why I couldn't seem to hold a job, why my perfectly good relationships would end up failing, why I'd have such a hard time socially or even with things that seem like a pretty easy thing to do like paying attention to someone - I can go on and on.
I have -always- felt very different from everyone.

Even my current fiance noticed my "issues" and told me to either see someone about it or basically that it would be over between us. So again, I went back to the psychiatrist for meds and saw a counselor on a weekly or bi-weekly basis basis (I can't remember which), and was being treated for Bipolar/depression again with no relief.
And because the medicines still weren't helping, my fiance accused me of not going, skipping appointments.

Like I mentioned in a previous post, I know that the symptoms aren't necessarily the root cause, but looking back with what I know now about ADD, I know they played a major part in it.
Had I known I had ADD, I -might've- been able to deal with things better. At least most of my "why's" would've been answered.

When I talked to my doctor about it and was diagnosed with ADD, I actually felt like there was hope. And it was really a very relieving feeling that my doctor knew exactly how I was feeling and what I was going through. For once I was actually able to relate to someone, and was a nice feeling.

It seems to me that because none of the anti-depressants or other meds helped at all, and the way that I feel even when I'm not sad or depressed, that I might have a major dopamine deficiency.
On the other hand, it seems that all the symptoms that are helping cause problems, become so overwhelming that I go into depression.
I'm more inclined to believe it's a mixture of both.

Well this was going to be the end of my post until I saw Ava replied again!

Ava :)
That's what I did, got re-evaluated. Both my mother's psychiatrist (last year) and my doctor (this year) both diagnosed me with ADD, not Bipolar.

It actually quite comforting knowing that someone knows how I'm feeling on the Adderall.

I went ahead and looked up the Dexedrine. You're right, no levo. And, of course, I had to see about pricing and it appears it's relatively a LOT cheaper than Adderall, probably because it's an older medication.
Also, I might have found a prescription assitance program that will cover it or reduce the cost! Dexadrine was actually the only one I saw in the list.
Cost is another reason why I'm not too fond of the Adderall. And if I get the dosage inscreased, it'll just cost more.
I tried to find patient assistance for it, but couldn't find one.

Thanks for the tip about Medicaid. I -did- try for it some time ago, but was denied. Not because the family income was too high, but because I didn't meet any of the other qualifications.

I might just show my doctor this thread, Friday, and see what he thinks about trying Dexetrine.

I really appreciate you taking the time to reply.

avareyne
10-25-10, 04:37 PM
It's comforting to know I wasn't alone with that either. I couldn't believe how bad I was feeling, people abuse Adderall and here I was feeling like warmed over crap lol.

Desoxyn for its age is quite overpriced. Shire has no assistance, even for XR. There are discount cards and assistance for other ADD meds. And even the general RX discount cards might work for Adderall if your doctor won't switch you.

I hope you get the dexedrine, sounds financially good for you, and gets rid of the levo. I see no reason why your doctor wouldn't prescribe it. I could only see him/her pushing a ritalin based drug before it.