Matt & his rages -

[Steely]

Boy, I have been meaning to write this for a long time - but somehow today is the day. I am just so concerned for him - and yes - I know I should let go, and let him work it out, etc. - yet I still worry.

His behavior from July-March was decent. He was calm, rational, flew to OR help out his dying grandpa - he was able to cope. He was on Zyprexa until Jan - when once again he decided it was too "dangerous" to be on. Well, true, the blood sugar, weight gain, etc can cause significant health issues - but I think he really just didn't like the side effects. Yet it always has helped him SO much.

By March I could see things start to switch - and of course that is the month his Pop died.

By April he was actively suicidal, including climbing to the top of a cliff and wanting to jump off. He started seeking out what little mental health services we have here - and that helped - until he went in one day to the clinic, suicidal, and they said he had to be admitted to the hospital - 2 hours away. Well, the hospital is a deal breaker for him, especially 2 hours away. He ran for his life. Furthermore - the psychiatrist got fired the next week - so just as he was starting to get help - he couldn't even get his medications changed.

His medication combo was done haphazardly when he moved here to AZ a year ago. He was over the edge and without ANY medications (thanks Dad) when he arrived to AZ. The best I could do was get on the phone with a psychiatrist he had seen in Dallas only once. She XR the current regimen. I am sure they need to be changed, as Depakote in the past has rarely done much for him.

In light of all of this in April/May - Matt's need for real psychiatric help became the true impetus for the move to a bigger city. There were other things that of course lined up, and made it the right decision for me as well - but - a mentally ill person should not be in a town where there is not a psychiatrist.

So fast forward to now - and OMG - it is like he is 12 again. No lie. The raging; the short, short fuse; the huge frustration factor - it is more than I can watch (so I leave) but then I think - he is LIVING like this. He must be so miserable. And he is.

His blood pressure has been a huge concern since BEFORE he went into Residential Treatment Center (RTC). So glad in those 2 years they addressed it - NOT. He at the time was on an AP and about 200lbs and 6'3 so the Residential Treatment Center (RTC) told him to go on a diet and exercise more. Great advice to a neurotic teen. He is now 6'4 and 180lbs and watches everything he eats. If he sees an ounce of fat on his body he gets upset.

Now his blood pressure vacillates from - when he is calm 150/90 to when he is upset 200/100. I swear to god, yesterday he looked like he was going to have a heart attack. It is scary!! The last Dr he went to gave him Metropol (a BiPolar (BP) medication), and then the Dr doubled the dose because it wasn't working on the single. Then Matt decided it doesn't work at all, and won't take it, since the Dr didn't seem to think it worked on the single dose. (There is little rationale with him at this point.)

On top of it he has these migraines that lasts for days. He he has had them since he was 4. They are almost to the point that he could be on disability just because of those. He throws up all day, and is out, for 2 days. And then afterwards his moods are even worse, and he does and says weird things.

Oh, yes, let's not forget that he has constant back pain - and it was found that he has narrowing of the spine and an injury of the spine. This results in other side effects like poor bladder control. Again - back pain started in Residential Treatment Center (RTC) (possibly where the back injury came from?) and they did nothing. I finally have the MRI that states what it going on, but there is no one here to help him treat it here.

So obviously moving is the right thing - but I just don't even know how we are going to even get there at this point. The last 3 days he has either been in a rage or asleep. And his blood pressure thing is worrisome - I mean 200/100 is dangerous. I told him today that he has to take the Metropol at least until we get to Oregon - personally I am not sure that it helps either - but it is all I know to do.

I am not sure what I am needing from this post - advice I guess about medication ideas? He is pretty open to my suggestions with medications - and he is not medication resistant for the most part - unless it is an AP - or something he has already tried. He, to his own admission, CANNOT take any type of sedative like Xanax, Valium, etc. It makes him - off his rocker. So those types of things to calm him down are out of the question. Unfortunately.

I guess I am also just scared - and feeling like the world revolves around me 24/7 for the next 2 weeks until we can get to OR - and I am freaking out. I have a fear of being in the car with him when he is mad. When he was little and he would rage he would try to jump out or try to hit me while I was driving. Plus we will have his 2 dogs, that don't like my dog - and that will just naturally push Matt's adrenaline into high gear.

Or maybe I am just overwhelmed because I have to pack and clean my house - and at the rate he is going with his house - we will be staying here for months until he cleans and pack. I have to be out on the 11th - so we have to leave soon after. I have no choice but to help speed things up with him - but it is not working.

God - yesterday I got a new door for his bathroom because he raged and literally split it in 2. I have to sell this trailer, so I have to fix it up, and he has to help me, if nothing more than for a consequence. He freaked out that I would be asking him to help me hang a door. He told me he had no idea how, and he couldn't - couldn't possibly do it. OK really? If I can do it - he can!!! At the same time - I give him a task of cleaning out his pantry - and he became Obsessive Compulsive Disorder (OCD) and wanted to paint it. It really is all or nothing with him - still - like it was when he was 12. But he is 20. And I don't know what to do anymore.

Wow - it helps to get this all off my chest. You know I am trying to put more and more distance between us by him moving 2 hours away. And I am trying to let go - I try everyday - with every ounce of mental strength I have. Yet - it seems he still needs some sort of advocate. Someone who can help him with all these issues. And yet, for now it is me - because to just kick him out of my mental sphere seems cruel until he has other supports in place.

Sigh..............................................................

 

[keista]

Clonidine? I've been researching it because I"m considering asking for it for DD1.

ORIGINALLY it is a blood pressure medication. It's now being used for sleep problems, ADHD and anxiety. So, you get a scrip of it for blood pressure and hope it has a sedating AND calming effect on him.

Strength and perseverance to you both.

 

[crazymama30]

Is there anyway you can tell him he needs the zyprexa for the trip, it will help him handle the stressful situation. It could also help with his BiPolar (BP) if it calms him.

Hugs. This sounds like a situation that would send me over the edge. Would it be better to drive up alone, and have him take a bus or fly up and meet you later? Is he better with strangers? I know with husband and difficult child, they are both better with strangers.

What about neurontin? It is used for anxiety and can be sedating to some, not sure if he has tried that one. Has he ever tried Tegretol? That was one thing at high doses that always managed to knock husband on his hiney.

 

[HaoZi]

He sounds so much like Kiddo in so many ways, right down to being taken off Zyprexa because of side effects (minus the blood pressure issues). Maybe he should be on the same medications she is. :S
That's a scary look at one of her potential futures.

 

[Steely]

Clonidine he was on for years, at first it worked, then not - yet Metropol is supposed to be in that family? That's why it seems like it would work?

Crazy remind me about neurontin - it seems like we tried that. Is it in the same family as Clonidine?

Tegretol he has tried but I am not sure why he stopped - it was years ago - around the time we tried Topomax which turned him into Dope-a-max - he couldn't even count to ten. I can't do a medication change like that until we find a Dr in Portland but I will keep it in mental rolo-dex.

And no - he will not take Zyprexa EVER again. He is so black and white - and this is just one of those BLACK things. The same reason he decided he that he won't take Trazadone to sleep - because "it makes him groggy". Umm....well groggy is better than being a butt #@$% because you haven't slept? No, he doesn't see it that way - and maybe I wouldn't either if I was in his shoes. I have had doctors try to give me all sorts of medications, and I know how they can sometimes make me feel worse - and I am just as firm as he is about not taking things that make me feel worse.

To fly up alone is a great idea but it would mean I am left with the 3 dogs that don't get along - which is a lot of dog supervision and interference on my part - but I am thinking perhaps that would be a better option. He is fine (I think) on planes - although he apparently did tell a mom to tell her baby to be quiet on his last flight - nice

I don't know - he wanted this ONE college class that Portland was offering - and it is already filled. School doesn't start until Sept 25th - and its filled -really????

I am just so numb - I have no idea how to help - what is appropriate - and when. But please continue the suggestions!!!! I need them. As I said - if I go to psychiatrist appointment with him in Portland - Matt is still open to my suggestions - which is huge. I think he trusts that I have been coaching him through this since he was 4. He cannot start all over again with some newbie doctor that wants to try Xanax and Adderall.

 

[Steely]

Thanks Haozi - see above for his reaction on Topamax and Clonidine (although Clonidine worked well in the beginning- perhaps worth trying again?)

Abilify made him an absolute maniac - he was literally up for 3 days taking his bike apart and reassembling over and over again in the garage. I thought I might poke my eyes out!!! Again, he was young - but I would be scared to try that again. Possibly - if he was willing. (And I was not around - lol) Trileptal was the same way..........but again...........age makes a difference. I think he might need to start all over again and trial and error things.

One thing that a regular doctor did where we live is decrease his Lamictal from 400mg to 200mg - he told him 200 did the same as 400.....that might be where I start, cuz I am not sure about that.

 

[HaoZi]

Trileptal and tegretol are closely related, so that might be why he stopped the tegretol. Trileptal requires a higher dose but has a lower side effect profile and needs no blood tests like tegretol does. The most side effects we've seen with the trileptal is a salt craving and the first couple of days of an increase she takes a nap. The Kapvay is an extended release version of clonidine, she takes that in the morning and the regular clonidine at night. We're tinkering with the Abilify - too much or too little and she's a violent raging psycho. We're taking her back up to 10mg on that. Wanted her off it because of tingly feet at night (though not as bad as the Zyprexa did to her), but she's too volatile on lower doses. They had wanted her to take the Abilify at bedtime but it activates her, too, so she takes it in the morning instead. Can't wait until puberty and we'll be starting over from scratch with PMS to toss in the mix. Not.

I hope Matt can find something(s) that work for him without adding more problems. Age can make a difference, along with what order things are added in. Yeah, preaching to the choir, I know.

 

[crazymama30]

Neurontin is in the same family as trileptal, it is also used for nerve pain from neuropathy.


Seroquel? Has he tried that one? It can be kinda sedating, which sounds like in his case might be good.

 

[HaoZi]

*notes to do research on neurontin or neurotonin or something like that*

 

[Hound dog]

If his b/p goes up to 200/100 get him to the ER. No joke. Don't wait. Maybe at the very least it will get it documented and some medication for it. That is dangerous.

Has he ever tried Lamictal?

As far as the rages........Those are really really difficult to deal with. I did it with Nichole for years and when I think back now I'm like how on earth did I DO that? Nichole's rages are horrid......and so far I am the only person who can eventually bring her out of a rage. That worries me. Once we found the right medication combo at the right dose for her it helped to even out her moods enough that we could begin to explore the reasons behind the rage and untangle her warped version of reality. A very slow process. She's doing very very well now even unmedicated. But she is still a work in progress. And I know she tries very hard.

What worked for Nichole were abilify, effexor, and trileptol all in very low doses. Unusual. But we weren't complaining as long as it worked.

I hope he can start treatment soon. The rages are not helping his b/p and believe it or not the b/p issues can be triggering some of his short temper as well.

Hugs

 

[HaoZi]

The headache + blood pressure mix... it's waving a flag at me but I can't nail it down.

 

[Lucedaleblessed]

Has he been scanned at some point. A co-worker was known for his rages and he was almost out breath when he had his rages. He was never fired because he was a relative of the boss. However it did turn out that his rages properly were caused by a tumor - too late.

 

[DammitJanet]

Head ache and blood pressure means BiPolar (BP) is too high and is at a dangerous level. Needs to be checked.

I am wondering if you could get matt to take an AP that he hasnt heard of but that might help him. There is a new on called Saphris that is dissolved under the tongue which might be a good idea. You might be able to tell him it was for something else. Also, why not ask for something for sleep such as remeron, ambien or lunesta or even restoril to get him to Portland. Heck, even vistaril might help him that far.

 

[crazymama30]

another new ap would be fanapt. I think that one you just swallow, unlike saphris.

 

[Steely]

I will write all of these down for when we get a new psychiatrist in Portland (I saw we because I need one too). I didn't know there were new APs out there. Have any of you tried them?

Sleep medications don't work for him except for Trazadone - which as I said above he doesn't like to take. It get so hard when they get this age - I can' t just cram it down his throat - LOL.

Luca, no he has never had an MRI - but since he has been raging also since he was 4 - I think this is more chemical - I think.

He has the headaches since he was 4 too - so I am not sure it is just high BiPolar (BP) - or maybe it is and he has had high BiPolar (BP) since he was 4 and no one noticed. He obviously just needs a total work over - and some medications for dealing with the headaches, the back pain, the blood pressure, and the rage - oh that's not too much. UGH. Especially since we don't have health ins.

I think he will hopefully settle down in the car once we get everything and everyone out the door and on the road. It is just the next 4 days I am worried about.

I don't know - I just don't know anymore. I am very, very tired.

 

[DammitJanet]

I tried the saphris and we went off it because we decided I simply didnt need an AP anymore. I was okay with less medications.

 

[InsaneCdn]

Can't help on the rages. But we deal with migraines all the time here... its better now, but we had to try lots of stuff to get there.

The most effective things we've found so far are...
- peppermint - either aromatherapy, or good old peppermints (small, strong ones are best), or peppermint tea
- chamomile - usually tea
- lavender - aromatherapy
- ginger - look for "travellers candy" - fairly strong ginger, intended for motion sickness (also works with morning sickness!), and really kicks in against a migraine
- OTC Motrin gel-caps (if it doesn't conflict with other medications)

Migraines were so bad here that T2's didn't even begin to touch the pain - and there was no solution to sensitivity to light and noise - like, in bed for 2 full school days, block-out blinds on window, no light on, minimal interaction or effort on anything. Haven't needed T2s - or had a major shut-down - in well over a year.

For any of these to work, though, you have to catch the migraine as it is coming on.
Once you're "down", its harder to come back.

 

[Stella Johnson]

I haven't read all the replies so not sure what some of the other replies were. Clonodine when used for high blood pressure is usually an as needed blood pressure medication. I've gotten it at the ER when mine went out of control. It hasn't been out of control in a long time though once I found a medication that worked right.

My dad used to take Metropolol so this is the only reason I know what I'm about to say. The doctor took him off it after he had his arteries roto rootered and didn't need it. Then he started having bouts of it going up sometimes. So the genius that he is, he started taking it whenever he felt like playing doctor. then later it would spike more. Found out from the cardio that Metropolol has to be taken on a regular basis if taken at all. Taking it with-o being on a regular schedule will make blood pressure spike up and down uncontrollably. So if he was on it but not taking it correctly this could cause some of his problem.

I thought I had migraines years ago. I had the puking and everything. Then started monitoring my BiPolar (BP).... went to a cardio and started BiPolar (BP) medications and I after that until I got this neuro **** I hardly got them anymore.

Something else to think about, has he ever had an EEG? How about recently? There are many types of seizures. Many cause mental health type symptoms. My difficult child was diagnosis'ed bipolar until they realized she was having 3 types of seizures and not all seizures are anything like grand mal. It wasn't until she had a grand mal that we started looking at it. Back when she was little we thought she was having highs and lows but now she is never what looks like "manic" anymore. I question whether she ever had any type of mental health diagnosis. I think it was more seizure activity than anything. Just my suggestion unless you have already gone that route already.

Does he see a cardiologist? If not he should really see one. Blood pressure otu of control can do lots of damage even at his age but I'm sure you know that already.

Hope things get better for you soon. Hugs

 

[Steely]

Thanks Stella, actually that is really helpful. I am very sure that is what he does with the metropol, which could be making it worse. He had a sleep deprived EEG back when he was 11 and they found nothing, but I still always wondered. There are some seizures that they cannot even detect.

We got to Oregon yesterday, and he already has a psychiatrist appointment wed. YAY! So I am also hoping she can help with blood pressure medications until we can get into see a cardiologist. As of last night he had already lost all his metropol on the trip anyway. SIGH......