Aspergers / Bipolar mix anyone taking Lamotrigine!! !

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Lately my ADHD has gotten in the way of my day to day. I asked about taking Ritalin before and very reluctantly I was given it. Now if you read back a bit, I am Bipolar, so adding this to the mix can be a bad thing. However Lamotrigine has worked very well for me too, so far. (These things have a way of just stop working out of the bright blue sky. Actually I am expecting it one day and am braced.) It wasn't for me, not at all, for what I was expecting at the time, the Ritalin. But the theory behind why I wanted it, is very sound and I still think over time, would have remarkable benefits. For the first time in my life I finally understood why a Bipolar would ever want to go off the meds, I had felt like my creative edge had been taken away and didn't like it one little bit. My god, I think I saw as close to normal as I ever want to see again. However, my blood pressure had gone through the roof, but I suspect due to other reasons, but nonetheless, we stopped the Ritalin. I went to the VA (Vets Admin) the other day to get back on it, but this time a different Doc, which unfortunately is very common, and he was not in the mood to do it, but will do it if there is no other alternatives. It does seem there is another med out there which he wants me to try for the ADHD, which is not a stimulant and I do not recall the name. It has to be approved for me to get it, it's a VA thing, they don't always have the latest and the greatest, so it's wait and see time. Bottom line is, for me, the Ritalin was way worth it for needing to keep my focus, but since I also am fully disabled I don't need to work either. But the day to day, as I said, has gotten out of hand and is causing a real life disruption, which also, in the past, has been mistaken for many of the Bipolar traits. ADHD isn't as simple as those that don't have it might think, especially after a life time of it. It really leaves a mark on you and my coping skills are no longer what they used to be. Consider it, but be very careful. Dosing a kid that has a combination of things going on, for example, and doesn't have good communication skills would be totally wrong to me or at the very least, have someone that knows them inside and out, fat chance of really anyone knowing that part, watching them like an ever loving hawk. It can get very complex figuring out what is doing what and that's just exactly what the shrinks tell me, "you are a very complex person". I'm glad I don't have to pay them for them to say that, hell I've known that for 55 years, if not longer.

I started experiencing increasingly severe mood swings in my early-mid-twenties; hypo-mania and depression with some mild hallucinations; I was never diagnosed bi-polar but I have tended to avoid doctors, ( rare exception was for extended sick leave from my last ever longterm job when anxious and depressed 16 years ago ), so that's maybe not so surprising. But I cured my hypomania; depression and anxiety with diet, after I happened to read a book which pointed to the possible connections between diet and mental health, ( "Not all in the Mind" by Dr. Richard Mackarness ). .

I found, ( after a while stopping and starting, trial and error; ... I learned very slowly that it really was worth the effort and "deprivation" ), as many others have too, that depression, mood-swings, etc disappeared on a gluten-free diet, and that I feel generally more stable and less anxious if I cut down on or completely eliminate dairy too, ( the other main food opioid peptide source ), and stop eating any sugar/sucrose, ( a potent mental/emotional and physical anaesthetic/analgesic that need more and more of to maintain the effect, and ends up increasing anxiety levels over time ).

1% of the population have celiac disease, and between 10-15% of people have elevated levels of gliadin-antibodies, ( the immune system reaction to gluten ). Autoimmune system reactions trigger the production of inflammatory cytokines, that can cause, among other things, severe depression, or "sickness behaviour". Gluten also stimulates production of zonulin, a chemical that causes cells in the intestinal membrane to open up passages between them, allowing large proteins, like the food opioid peptides in gluten and casein, into the blood and to the brain.

The longer and more consistently that I have excluded gluten, ( and also dairy and sugar ), from my diet the better my mental health has become.

PS. I'm still addicted to carbohydrates in general though, despite having noticed that when I exclude most starchy carbos I feel far more able to interact with other people, and also initiate and sustain complex longterm projects. Odd one that.

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Your very kind to ask about helping him. I don't think there is anything you can do, other than fix the very broken mental health system in the USA so that he could have more appropriate care options. When he's cycling we need a home health aid to help keep track of him and keep everybody safe, so he doesn't accidentally start a fire or something. They don't do that, nor do they have adult daycare programs for him when he grows up, or any way to give our family enough relief to be able to keep him with us. We have to sleep sometime and when he's cycling, he doesn't. We don't have enough money to pay for help out of pocket. Kids like him used to just be warehoused, and now the warehouses are gone (which is good) but there isn't anything better to replace them with. There just isn't anything in the southeast.

He's 13. He started hallucinating at the age of 9, but meds stabilized him...for a while. This past year has been horrific. The year before he did really well and it looked like he had a very bright future. He did well in school, and was really happy. He had the hallucinations but knew they weren't real and somehow stayed with us. Now, he's rarely really here with us, he just doesn't know what's going on or how this is affecting everyone. I feel like such a traitor for trying to find some kind of in patient program, but my other kids deserve a childhood, and we just can't do it 24/7. I lost my job this year because I had to leave to get him out of school at least 3 days a week this year because he was freaking out and scaring everybody.

He's really gentle, and wouldn't hurt anybody on purpose, but when he's delusional he doesn't know what he's doing. It's so sad because when he snaps out of it he doesn't understand why things are the way they are.

Ounion,

We've tried, in desperation, to do some of those diet things for my son. He wouldn't stick to the plan. His aide at school thought we were being cruel and would give him all the worst foods for him. He would sneak out of bed at night and try to find anything he shouldn't eat and eat it. We got rid of everything in the house, but at school he still had access. We explained to the aide why we were doing the diet but I think she thought we were crazy.

At this point we can't afford to try to do it again. The money well is dry.

Hi Ounion,
I've been vegan for over fifteen years now, and for several years of that I was also gluten free (trying to manage colitis.) It didn't seem to help, but I'll bear in mind the sugar. I'm desperate enough to try anything.

Kiley, I wish you lived near by, so I could occasionally house sit for you. My mother would get very ill, and my brother and I used to take night shifts to make sure there was always someone with her. I know how exhausting this can be. But I don't know what it's like when it's your own child. I pray they get the meds right and he will stabilise again.

If you were in the UK I could give you some good advice, but I don't know the system in the US. I could ask a friend if she knows anything, but I suppose you've already checked every avenue you can think of. How many other children do you have?

Mgran,

In the US there isn't a system for this. Up near Washington DC they have some limited services, but that's several states away. Historically people who were mentally ill were put into institutions where they were abused and ignored. When my Aunt was born with Downs Syndrome in the 1940s my grandparents were told just to tell everybody that the baby died, sign this form, and they'd never have to worry about her again. My grandfather was furious, probably for the first and last time in his life. He was the most even tempered kind man imaginable, but that really upset him. He brought my Aunt home and they raised her, but they could afford help. Those warehouse programs my grandparents were offered are mostly shut down now, but there isn't anything else available. If my son had Downs he would have options like group homes, adult work programs and so on. For mental illness there is nothing at all, unless you have a great deal of money for private hospitals (which cost far more than our income, nevermind having anything to live on ourselves) or private hired aides (we'd have to pay the aid more than we earn after our taxes are paid). If we sign my son over as a ward of the state they will have to find him a warehouse.

I've been having to deal with all of this while simultaneously coping with my youngest son who's got some kind of digestive disorder causing huge amounts of pain, and who is profoundly gifted. The school refuses to give him appropriate academic services despite laws that say they have to. I did actually have his ped. gastroenterologist call with a plan today, which was very nice. His pediatrician gave up and decided it was all in his head and he should just take Zoloft until he stops complaining. Zoloft isn't even approved for little kids. Middle son is an Aspie with ADHD, and having a hard time with school because it's so chaotic. Next year the class sizes will be even bigger, hence louder and more chaotic, and I can't even get them to allow him to have a silent lunch so he can have a twenty minute break in the middle of the day. Out of all that I've got one Dr treating one condition of one of my children who is proactive and treats my child with respect. The mental health team dealing with older son is nice, but they just don't have much to offer. They are supposed to meet this week to brainstorm and try to come up with something they haven't already tried.

How our country manages to do so little with so much money is beyond me.

The only other name it has, that I know of, is Lamictal, & that's the name brand in the U.S. Lamotrigine is the generic name of it. If you live in another country, the brand name could be something else. But it's a mood stabilizer, not a stimulant, like Concerta you were talking about.

We are in the US. I can ask my son's dr about it. I take Concerta, but I don't have a mood disorder like my son does. He used to take Focalin, but had to stop because it was making him cycle. He's been on dozens of for mood and psychosis and we are trying to find some other med or plan as we can't keep him with us in his present state and there are no safe places we can put him.

Kiley, hello! That school aide sounds a real menace; unfortunately it is still not that unusual, despite sound scientific evidence to the contrary, for people to think that using diet to improve mental health is a sign of mental illness itself. But it is very undermining, especially if the reaction doesn't stop at pity/scorn but extends to sabotaging one's efforts by introducing/allowing "forbidden foods" into the the diet of a child.

I have read your other threads, in the Parent's forum, about your son's gastrointestinal problems etc, and the appallingly dismissive attitude of doctors, and just want to say that this is a very common experience for people with gluten ( and other food ) intolerance; the "sub-clinical"/difficult to identify GI issues, ( because as many as 9 out of 10 cases of celiac disease do not fit the classic/old "diarrrheoa, etc" model ), and the impatience of the medical profession, including the "it's all in the mind" reaction.

In the face of this kind of reaction there is one battery of tests which will command respect from doctors, and they are those for gliadin anti-bodies. I have never had any of these and don't know how to get them, what precisely they are called, etc, but two sites which provide masses of good information about them are "The Gluten File", and its sister site the forum "Gluten Free and Beyond", at: http://sites.google.com/site/jccglutenfree/ and http://www.glutenfreeandbeyond.org/forum/ respectively, and "Celiac Com" at: http://www.celiac.com/

I don't know how much the tests cost, whether they are available on health insurance/the NHS, etc but I do know that a gluten-free diet is no more expensive than a "normal" diet, unless try to replace bread etc with their gluten-free equivalents; gf bread, gf biscuits, gf this and that, rather than simply eating more rice, potatoes, corn, and more fresh, rather than processed meats, fish, fruit, and veg, etc.

Best wishes finding the solution.

Mgran, it is definitely worth trying a sugar-free diet for at least a month or two, because it really is a powerful mood-alterer. ... I have also read that veganism, longterm, can have a profound and cumulatively negative impact on mental health, unless take a lot of good supplements, ( which I personally am not enthusiastic about ), or eat some ( oily ) fish at least once a week for the zinc and vit B6 etc which otherwise are likely to become deficient in.
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Last edited by ouinon on 16 Jun 2010, 3:39 am, edited 1 time in total.

"He started hallucinating at the age of 9,"

That is seriously, seriously early for the BP to hit that hard (not unheard of either though) and, if I am not mistaken, that is a pretty severe onset/continuance of it, which I most certainly had, but in my very early 20's. Stress and dead bodies, in the Army, were the trigger. Some milder indicators earlier, late teens, but passed off as a he'll grow out of it thing, I guess. I'm sure the ADHD was around and very pronounced much earlier, but both went unDXed for a ton of years. Normally the hallucinating decreases with time. With me I would guess about 6 months worth of heavy, with a little hang around for a few years after, but I also knew that it was not real. They most certainly are real, but that is something you have to experience to fully understand. Yet, the irony of them were, they were telling me symbolically exactly what was going on and actually it got to the point where I was enjoying my "driver-less ride" as I like to call them now. Remember also, while hormonal treatment was tried and dismissed very early on (actually it was the first attempt at a fix), it still plays a role in him and he is 13 now. I still think they should pay more attention to the hormones and I often wonder who has the more severe case of a problem, the Docs or me. Never be afraid to say no to them, they read labels and so they think it should be, but all so often isn't. Dose's don't need to be near as much for them to do things to me that it doesn't say in the book. Two dose's higher on the Lamotrigine and I am damn suicidal, while lesser is just fine. But I am also old enough to know what is a passing thought of it versus this is serious trouble. A dose that the book says won't do a thing, I would insist on, if I thought it the way to go. You don't need to have been in combat to have a form of PTSD, called Complex PTSD, best look into it and so should a lot of the good folks that come here. There is a ton of it floating around this site. Rest & Relaxation is a tough thing to get, when you can't get away from yourself and there sometimes seems to be only one way and I'm not ready to say good night Irene, just yet. Booze saved my life, but would have killed me in the end, while still unDXed.

As Zappa said, "Get a second opinion". He didn't and died. The DX sounds really screwy to me and it is now thought that the Schizophrenia and BP genes are very closely related, come from the same main source, but vary a bit later. Add in a comorbid, or not, and you gots a mess. However, give him some credit too and with age he may just get a little wiser, promote it and promote it hard. Just because I saw things, doesn't mean I am stupid. Doc's give options, ideas and opinions and I tell them what to do. Half of them, at the very least, can't think out of the box. Someone had to, they don't live in here, only I do.

Be really careful about labels, statistics. What the label says often as the very opposite affect on me. Sugar, caffeine, and a few other things being discussed here, both will put me dead ass asleep after a big dose of both. Like 3 big, I mean big, candy bars and two big mugs of coffee? Fell fast asleep and should have been bouncing off the walls and I had only been up for a couple of hours too. I tried it again much later and same thing happened. I call my decaffeinated cream soda, liquid Valium. They actually soothe me and help me concentrate better, which decreases my rages. So does smoking, but I would vote against getting that nasty habit. Disraeli said, "There are lies, damn lies and statistics." and he was right on. My liver screws up and if you add me in with the couple of, and only a couple, of the "official DX's" I have, you could toss me in with the food studies and it would be totally wrong. Don't fully dismiss diet, but that s**t has been debunked pretty well as of late. They promote it, all too often, because it's a money maker, just like the drug makers. If it works, great, but remember what I said, the DX sounds big time f****d to me and if diet works, it might not be for what you really have, or haven't.

I was told very early, like the first DX, that it could take a very long time to find the right drug/s and they were right. It is so worth it. And the road to get here was so tiring, but so was life without them. I am a survivor.

Hi Kiley,
I'm so sorry to hear about your problems. It puts mine in perspective. My son is anxious and depressed a lot of the time, and obviously aspie (it's how I wound up here) but his problems pale in comparison to your son's. He enjoys bits of school, has made one close friend, and doesn't have hallucinations. He isn't on any meds, and is doing okay academically. And my issues are under medical management right now... and I don't think were ever as bad as what your son has to contend with. I'll remember to be thankful for the good things, instead of always moaning about the bad things.
I hope you don't mind me saying I'll pray for your family, your children in particular. There is hope that something will change for the better at some point, if they stumble on the right meds, or if the issue is excacerbated by hormonal issues things could improve. But in the meantime, I hope that you and your familly manage to get enough rest... is there not even any respite care so you could have a holiday sometime? In the UK they do have respite support for carers of severely ill patients.
Again, I'm really sorry.

Does anyone else find that meds make them feel stupid? I'm not saying I'm going to go off my meds, but I'm feeling really slow and thick headed at the moment. I don't know if it's the lamotrigine or the rimidol but I'm really fighting to do basic things like remember phone numbers, string a sentence together. Is this temporary, or will I have to learn to live with being a doofus.

i take it for epilepsy!!

I have Asperger's, but not bipolar. However, my depression is severe enough that antidepressants alone cannot even me out (currently taking it with Lexapro). It actively fights back against the meds, and I was getting severe mood swings at least once or twice a day that lasted at least 2 hours each. I asked my doctor about a mood stabilizer, and he put me on Lamictal / Lamotrigine. It caused some annoying itching for the first 6 weeks or so, that I countered with generous amout of lotion. Over time the irritation decreased and went away completely. Overall, it's helped me dramatically. I still get down occasionally, but typically not as bad and only for 30 minutes or so. I haven't noticed any other side effects.

Lamictal (Lamotrigine) it is often used for epilepsy, that's why I wasn't sure about taking it, but it has helped my moods in the fact I do not react, trigger so easily any more still have my extremity of moods which in away do not mind, more creative when on a high or low... never really medicated for most of my life and so glad I was not put on medication as a child, as a young adult feel would of helped. But now finding with all my neurological differences Bipolar, Dyspraxia, Dyslexia, Aspergers, ADHD + as I get older its harder to cope, my traits seem to be getting stronger or maybe simply the fact too exhausting as we age to want to play the part, guess also I fully understand, have accepted my differences and happy to be me. The medication does take the edge off, without changing me and no side effects...

I'm currently waiting on the results of a blood test to see if I can carry on taking Rispiridone. I'm really hoping I can, because it finally put a stop to hallucinations and paranoid thoughts that have been causing me stress and anxiety since I was about sixteen. Recently they got so bad that I had to do something about it, and now I'm wondering why I put up with it for so long.

Well, partly because the paranoia made me distrust doctors of course...

But I'm going to be up the swanny if they take me off the anti psychotic. They'll have to find something else, and I don't know if it will work as well.