jlb83

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  • in reply to: 15 y/o daughter is begging to be put on ADD meds. #112329
    jlb83
    Participant

    Hi MyGirlG,

    I’m glad you’ve decided to let her give it a try! Very good decision, really.

    I am a mom to an 11-year old girl who very likely has combined type ADHD just like me. I was diagnosed only a few weeks ago, and I’m 35. She is on the wait list at Columbia University Medical Center, where i currently am a patient, to see the ADHD experts, so we have to wait about another 4-5 months for her to get evaluated and tested.

    I would have LOVED the chance to try medications when I was a teen. But my family is really old school, not from “Western civilization,” and therefore don’t take mental health/neurobiological issues seriously. Plus I didn’t know why I was struggling so much. So I suffered a great deal as a child, teen and young adult.

    Almost all teens go through a lot of difficult stages in their lives for various reasons, obviously, but those with ADHD and mental health issues and/or other neurobiological issues face extra challenges. It’s really painful and isolating, and by the time untreated children reach adulthood, things seem completely out of hand, hopeless. Everything is a disaster.

    It’s great that you are giving her the chance to see what it is like to fully LIVE with ADD, not just survive and cope. She clearly knows what she wants and needs, and her instincts are telling her that if she is given just a little extra help in the form of medication, with the things she has already accomplished and the love and support she’s already getting from her family, she’ll really thrive.

    Good luck and I hope she finds the medication(s) that work best for her. Sometimes it can be slightly frustrating trial and error, but sometimes you get lucky and find the one that works wonderfully right away.

    in reply to: Your experiences of meds? Pro/cons #112276
    jlb83
    Participant

    Hi!

    I’ve only tried three different meds: Strattera (atomoxetine) 40 and 80 mg, methylphenidate (Ritalin) 5 mg, and currently I’m on the titrating stages of Vyvanse 30 mg.

    I am also currently on Wellbutrin XL 150 mg once a day, but this is for depression.

    I didn’t like Strattera. I started with 40, and then went up to 80. I took it for about 10-12 weeks. I just couldn’t do it anymore. I did feel slightly more alert, but it didn’t help all that much with focus. It messed with my sleep. It made me extremely thirsty and sweat profusely. By the afternoon I was very fatigued. I was so hot on it all the time. I wore t-shirts outside even when it was just 50 F!

    Then I tried methylphenidate 5 mg. The psychiatrist who gave it to me was not an expert in ADHD and therefore didn’t feel comfortable giving me any more than 30 tablets a month of that. This only worked alright when I took 2-3 tablets minimum, and I’d have to take it every 3-4 hours. I went through 30 tablets quickly ’cause it wasn’t helping me just to take one a day.

    when I finally got diagnosed with ADHD (combined type), I was put on Vyvanse 30 mg, and I have taken it for 6 days. It’s gotten better for me every day since I started taking it. I feel really calm on it. I really feel the effects about 1.5 hours after I take it, up to about 4 PM, and then i get really tired unless I drink coffee or something. But I always compare the calmness of taking this to taking a few benzodiazepines, but minus the drowsiness. I am alert, but my mind and body are amazingly still.

    It messed with my sleep for only one night, but my sleep has actually improved. I fall asleep within 20 minutes, and I wake up only about 2-3 times a night and go right back to sleep. Before this med, it’d take me at least 1 hour to go to sleep, usually 2. And I’d wake up about 5 times a night on average.

    I feel motivated, calm, and I can focus on one task at a time, even mundane, boring ones. And I don’t have the urge to stop and move on to something else out of boredom. I don’t fidget so much anymore. And it hasn’t affected my appetite too much. I’d say it’s remained the same.

    Today was my best day yet on it. I accomplished some stuff at home, and I managed to be effective and mentally present at work. I came home and ate something and had a bit of coffee so I wouldn’t get the fatigue again.

    Vyvanse has been a miracle for me. Well, I am only on day 6, so I’ll know for sure if it is really the medication for me if every day going forward ends up being like today. I do think that I am not up to the optimum dose yet, because I am not where I want to be yet with focus. And there is still that middle of the day fatigue. I’d like to not have to always try to fight the fatigue every day. I think I might be bumped up to 40 mg, maybe 50 mg max. But I don’t expect to go any higher than that, because I feel like I’m really close to what “normal” is, without losing too much of my personality.

    For extra context, I’m 35-years old, a full-time student, mother, and I work part-time as well.

    in reply to: Having to learn like a neurotypical is wrong IMHO #111878
    jlb83
    Participant

    Yeah I hate the way of teaching and learning that are traditional in these supposed “advanced, first world” countries.

    I always excelled in small classes that involved group work, and in which the teachers always gave us ample opportunities to get good grades, whether they be extra credit assignments, dropping lowest grades, small quizzes, open note exams.

    I just had to drop my linear algebra class. Math is my top subject, but I hated the way this teacher taught. I thought the material was easy. But I am horrible at exams. I am excellent at homework, because we’re actually given time to do them. Come exam time, everything I know just flies out of my head when I need it most. I get anxious, I second guess, third and fourth guess. Focus too much on the questions that I second guess, and end up rushing through the exam when I realize i’m running out of time. I make a lot of very careless mistakes.

    Thankfully I didn’t need this class for my major (I too am a physics lover! I am a physics major and chemistry minor and I’m finally in my last semester.), I just enrolled for it because I like math and I wanted to fill my schedule with subjects I typically enjoy.

    in reply to: irritably and jealousy #110763
    jlb83
    Participant

    Hi addgrl,

    I can totally relate. I’m super irritable. And I have a history of jealousy, I am ashamed to admit.

    I was like this before any meds (I don’t currently take meds because I was recently diagnosed so my doctors and I are trying to figure it all out right now. I tried low dose methylphenidate immediate release, and they helped, but only if I took up to 15 mg every 3-4 hours). The crash does suck.

    Were like this before you took the stimulants? Or have you just gotten worse recently since you started taking the meds?

    What I have done over the years that works for me (and this isn’t easy, I’m just going to admit this right now), is that I kind of “shut down.” What I mean is, once I feel those strong, negative emotions overtaking me, I kind of just stare straight ahead, make everything fade away into the background, go into “brain fog” so that I don’t register anything anymore, and I tell people to leave me alone while I ride it all out. Sometimes I have to shut myself out from the rest of the world so I can try to relax, do something that interests me, write in my journal, listen to music loudly.

    My husband, when I first started doing this with him because I was tired of feeling so jealous and hurt for the littlest things, found it really bizarre at first. He’s all about talking through things right away. I need a good hour or two before I get there. To others, I look childish and spiteful, but this is how I cope. I HATE those strong negative emotions. They make me feel so bad and they ruin my mood for the entire day. When I do that, I calm down more quickly than I normally would, and I stop myself from saying really horrible and hurtful things that I regret later.

    I don’t know if that’s something you want, or could, try. But I find that it does help to just try to dissociate almost completely from the the environment. Those negative feelings really suck, I feel for you. I hope your doctor helps you figure this out really soon.

    • This reply was modified 1 year, 11 months ago by jlb83.
    in reply to: Collar chewing when I was a child, but now… #110710
    jlb83
    Participant

    Hi Ranma,

    I’ve got a fidget cube. I also have one of those blocks that you can fold over and over again, they’re rectangular and then you can fold them into blocks, like this one:

    Infinity Fidget Cube

    I’ve got squishy things too. I love playing with playdoh.

    I didn’t have a biting habit, but I have a cuticle picking habit that’s pretty bad.. I do it until it’s sore and bleeding. I also bounce my leg a lot, shift in my seat a lot, start playing with whatever is in my vicinity. I find that when I have these fidget toys, I am less likely to start finding stuff to pick/destroy and I stop moving around so much. It may help you take the focus off of the biting thing for you.

    in reply to: Feelings of Relief and Even Slight Joy?? #110709
    jlb83
    Participant

    Hi Ranma,

    Thanks for the response. Your response did not upset me, because there is always that part of me that knows there will always be a lot of judgmental people out there, including those who want to pick on us or make us feel like we are just ditzy/dumb/clumsy/airheaded/addicts/crazy etc etc. That’s why I’m thankful for small communities like this! Here, we are not judged.

    I understand what you mean about not wanting to tell people. I have always been of the mind that it is important to speak out about our issues so that we can reach out to those who are suffering in silence. Also I want to play a small part in destroying all the stigma and ignorance surrounding this condition. But I also know that there a lot of times when we may need to protect ourselves. Of course, no one wants to be harassed for something that can’t be helped.

    I hope you do find the help you need. Medication alone won’t help, as you know. You need a larger, stronger support system. Without that, our symptoms will remain as they are, and we will continue to suffer. I too am trying to find my support system. Thankfully, I have moved on to new healthcare providers at Columbia University Medical Center (I live in New York City… my goodness, imagine someone like us, living in NYC! It’s a nightmare I tell you. I have dreams every single day of leaving this chaotic place, it is torture to be here 🙁 ), and I am happy with my new psychiatric NP and neuropsychologist, who are working together to help me, and they will likely give me some resources and connect me to support groups. It takes a lot of time and patience (which for many of us, are abstract concepts lol), but I don’t know… we’ve got to keep going.

    I am also glad to find someone else here who admits to struggling with emotions. I mean, I wish it wasn’t so hard for us but, there you go. I am glad someone can commiserate. I feel like a child! Again, I know this isn’t our fault, but I was always so used to getting mad at myself for flying off the handle at things everyone else would find minor. And I dwell on the stupidest things… *sigh* Dealing with the emotions is probably one of the hardest things for me. The ups and downs…. they take a toll. They make me very tired.

    Anyway, again thanks for the response! I hope you also find this community at least slightly helpful 🙂

    jlb83
    Participant

    Hi MadisonDee,

    As you can see, you have a lot of company, a lot of us can definitely empathize.

    I am 35-years old. I’ve had two evaluations in the past month. One psychiatric NP who thought my symptoms weren’t very clear-cut so she sent me to the neuropsychologist to see if I had bipolar type 2, ADHD, or both. I saw the neuropsychologist yesterday. It took 2.5 hours, and we did a battery of tests. He told me what I already suspected: that I have ADHD, both inattentive and hyperactive. He didn’t give me the full results. I will get them in 2 weeks. But he said that from observations of me during the (super boring) tests, and looking at some of the results, it appears to him that I have classic symptoms of ADHD.

    It was hard for me, too, to accept that I could have this condition. I grew up thinking there was something different about me. I didn’t know what it was. I just felt different. Kids in school didn’t really like me. My family was always exasperated with me for numerous things. I didn’t know what it was, though. So I just continued on this existence.

    Fast forward to today. I sought ADHD experts because of some of the things I read online, I could totally relate to. Also, I was no longer depressed, and I could deal with anxiety much better than I was able to in the past. But I still felt like something was off. I looked at my life, and I looked at my sisters, my friends, other people around me, and I thought: “How could these people get their crap together by just putting extra effort? I’ve tried EVERYTHING and I am still a huge hot mess.” Also, my 11-year old is showing classic signs of someone who is both inattentive and she is also wildly hyper at times. So, I decided to dig deeper into myself.

    Every time I doubt my diagnosis, I think back to my history and how I always felt weird and different, and that people seemed to treat me differently. I’m not saying it was my fault. Of course, having ADHD is not our fault! We were born this way, nothing can change this. But, I just KNEW there really was something that made me different from most of the other people I knew.

    It’s interesting once you make this discovery about yourself. This discovery made me realize that my father is the one I inherited this from. He has no idea though, and if I told him he has ADHD he’d deny it! And his family.. my mother’s family has absolutely no history of this. My dad’s family, on the other hand.. I can definitely see now how this disorder manifests on my dad side, and everything has been made so clear. We are quick to anger. We focus on all the things that annoy and distress us and get ourselves worked up. We get aggressive and we tend to drive others away with our aggression. Hence the isolation and people not liking us!

    What’s great is that, now you know, and you are taking the steps to cope with this. I am older than you are, and I am only just starting to accept, that this is me. I have to find so many ways to cope with life, and it is very different from how others cope. For example, to get anything done, I have to do them in very short, 15-20 minute chunks. And I must have my favorite tunes blasting so I can get myself hyped for the tasks. But I can’t just tell myself, “OK, it is now time to sit down and do this! Focus! You can do it!” Nope… doesn’t work that way for me. I have very specific ways in which I have to do things, and people think I’m crazy, but you know what… this is me. This is how we are, and this is how we must cope in a world that cannot understand what it is like to live like this. Be you. Be unapologetic about it. Your goal is to make sure you are comfortable, happy with yourself, and know that you are trying your best to cope. And you have a community who is working hard at this along with you!

    Best of luck 🙂

    in reply to: Songs That Speak To You #110573
    jlb83
    Participant

    Anything Aimee Mann, but especially her album “Lost In Space”

    in reply to: Paper or Electronic Planner #110339
    jlb83
    Participant

    I have both! I have this wonderful planner I bought on Amazon and will continue buying, because it’s awesome:

    Clever Fox planner

    I use Google calendar a lot too, and note-taking apps like Evernote.

    I need multiple ones. I’m sure a lot of you are the same. One reminder is not enough. Two is not enough. Three is a minimum.

    I write A LOT because ADHD, so I need a fat planner, and just unlimited space on electronic planners and calendars.

    I also need a lot of different colored gel pens. They must be gel pens. They must be at least 10 different colors. And I use highlighters. I find using many colors works for me, because they’re pretty, otherwise I will just not read what I write, or not read carefully enough. Black and blue ink aren’t attention-getting enough for me.

    jlb83
    Participant

    These have been very interesting to read. I am answering as someone with ADHD (combined), married to someone who most likely has ADHD inattentive type but is coping with CBT alone, and an 11-year old who isn’t officially diagnosed but will get evaluated soon. She is a lot like me, and therefore seems to be ADHD combined as well.

    Must admit, reading some of these things kind of stings, because I was that child no one understood or wanted to understand. I was that person who wondered for 30 years why I felt like the most unlovable person in the world. But after reading up a lot on this condition and recently changing my psychiatric health providers to those who are experts in the field, I understood what was going on, the dynamics behind all my relationships in the past. Learning about my condition and finally understanding what has been the root of my lifelong problems have helped me put things in different perspectives.

    For the past few years, I’ve been telling my husband that I really appreciate his staying with me even though I was really difficult during much of our 7 years together. He is the epitome of patience, compassion, understanding, and, he claims, he has unconditional love for me and my daughter, his stepdaughter. I thought to myself, “How the hell can this guy say that after the crap I put him through over the years?”

    I’d like to add, although I am most definitely the more “difficult” one in this relationship, he too has given me a lot of issues in the past. He has all the signs of the inattentive ADHD person, although he probably won’t go to get evaluated for that. His inattentiveness was really, really hurtful to me. He is definitely the more emotionally balanced one with better impulse control. He can manage with CBT alone. I am the much bigger “hot mess” and need meds, probably will need them for the rest of my life. Without them, my ADHD is pretty severe and debilitating. In addition I definitely need years of CBT.

    But anyway… I would marry him all over again because even though there were so many times in the past his inattentiveness made me feel like he didn’t care about me, made him seem selfish, uncaring, his forgetfulness and his needing for things to be repeated to him over and over and over again driving me insane, his hyperfocus on his hobbies, needing constant reminders, etc, his wonderful qualities redeem him. It definitely helps that he is the one who is much more calm, emotionally sound and less impulsive.

    He claims that he is happy with me and I believe him, because any show of emotion to me, anything he ever said or says about our relationship has never been a lie. He works hard to be more attentive to us. It is hard, but I understand what he needs and try to be patient. He has also been more effective in telling me what he needs so that I don’t fly off the handle when he forgets something for the umpteenth time.

    I suffer pretty much all the symptoms of ADHD, but I’m slightly more attentive than he is (this is my second marriage and as someone who had always felt forced to run the household,I absolutely HAD to try to stay on top of things, as much as I could anyway..), but definitely more hyper, aggressive, impulsive and emotionally unbalanced. Over the years, I’ve learned to turn myself into an apathetic, unfeeling zombie when I feel like my emotions are about to get out of control. Sometimes I still have the outbursts, but then within minutes, I’m fine again. I hate that roller coaster of emotions, it makes me feel like I’m going crazy, so I have learned to just detach myself from everyone and everything for a while until I feel like I can cope without yelling at/insulting/criticizing/nagging others. It’s really weird actually. When I feel like I’m about to lose control, I just stare off into space and not respond, or barely respond, to anyone or anything until I ride it out lol Definitely not saying this is great either, because then I have to make myself unavailable to my family and others for like 30 minutes while I ride out the emotions but… I think it’s helped, I don’t know. Better than me yelling I guess *shrug*

    Oh and then throw my 11-year old into the mix. She was like me as a child. Very hyper, impatient, fidgety, won’t sit still, won’t shut up, interrupts people, moody, sassy, very loud, has trouble respecting boundaries, etc etc

    My husband is probably the most patient and understanding person I have ever met in my life. He is the only person in my life who made me feel really loved and wanted, which is why early on in our relationship it was so hard for me to trust him. No one ever made me feel like I was worthy of love. I am fortunate to have him and am so grateful, that I work really hard to keep this family together. And by work hard, I mean, I work hard on myself and make sure my ADHD doesn’t ruin everyone’s days. I am also working to get my daughter to see therapists ASAP, and being patient with her and keeping in mind that I, too, was just like her.

    We definitely have a very interesting household lol and I definitely keep people at a distance because I know that it takes a special kind of person to like and accept me for me, and there are so few out there. I concede that I have never been an easy person to be with. I also don’t want people to see how bizarre my home life can get lol and we all have to work so hard to keep everything from falling apart so we are very private people. But, it is working for us, by some miracle. After 7 years of this, I can say that, because my husband and I work hard every day on ourselves and the family, that we are stronger together now than we have ever been.

    • This reply was modified 1 year, 11 months ago by jlb83.
    in reply to: ADHD is wreaking havoc in our home. #110336
    jlb83
    Participant

    Thanks a lot for responding. Yeah, my husband has tried to make me feel better by telling me that because I know what our issues are, that I am working hard to make things better. The thing driving me right now is I refuse to let her go through what I went through growing up. If I can at least give her the tools to cope now, I’d feel much better about her future, and so will she. I had such a crap life for most of my 35 years, and it’s because no one knew what to do for me (parents are immigrants, there always was and still is stigma regarding mental health/neurobiological issues around our community, sadly). I was the “black sheep”, the outsider of the family that no one understood, and whom was sometimes feared because of the outbursts and unpredictable mood…

    Thanks for the links, and I will continue reading up on how to help her deal with the intense emotions. I’ve been doing a good job for the most part, but it’s super tough when I’m off meds and having bad ADHD days, which is about 3/4 of the week. I have to try EXTRA hard when I’m off them. And when my husband doesn’t understand, I try to explain it to him from the perspective as someone with ADHD and that helps too. We are all learning together as a family.

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