![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 24 of 24. This is the beginning of the thread.
Posted by Dinah on September 22, 2008, at 14:16:09
On one level I know this. It's why I assume therapy is forever. I'm not working through trauma. I have a frayed and overreactive nervous system. Migraines, IBS, the new lovely tinnitis, etc etc.
Plus I just discovered that cataplexy doesn't come without narcolepsy. Which explains why my first sleep neurologist insisted I had narcolepsy even though the sleep studies didn't really show it, and even though the DNA test indicated I didn't. I wonder if they're wrong about the link?
So now I'm left wondering if my involuntary naps are dissociative tendencies, or a neurological problem. Both can be triggered by emotion, so... I dunno.
It was forcibly brought to my attention yesterday. I had an exciting morning, but all went well and I was feeling pretty darn good. Then a couple of hours later - Pow! I all of a sudden felt like I'd stuck my finger in an outlet. Or eaten a few dozen caffeine tablets. Ear ringing, general buzziness, extreme sensitivity to stimuli. And at the same time the overwhelming urge to sleep came over me. Sure enough, after about a half hour involuntary nap, a risperdal, and a frova I felt more or less ok.
I should have never been allowed to reproduce. The ability to feel a pea under twenty innerspring mattresses does not offset the cost.
And again I'm reminded why I keep my life still and peaceful. Because even with the skills I've developed over the years in relaxation, I still have to attend to my environment and keep my emotional waters as unruffled as possible. Hence the therapy.
I wasn't really kidding about the DSM diagnosis. All the positive thinking in the world (and many of you probably know me as an annoyingly positive thinker at times) won't offset the physiological *^&*@#.
Posted by Dinah on September 22, 2008, at 14:47:22
In reply to I'm never going to be well, posted by Dinah on September 22, 2008, at 14:16:09
I'm sorry. It's nothing you haven't heard before.
It just bothered me because yesterday was a good day. I planned ahead, I worked to make it go smoothly, and I did well. I felt so happy and optimistic.
My darn therapist is out of town until Thursday. He says I can call him, but his cell phone access won't be good, and he'll try to call back in the evening sometime. Heck, even when he's in town he's bad at calling me back. Calling him this time will just give me something to feel angry about, when he forgets to call back.
Posted by JoniS on September 22, 2008, at 16:10:08
In reply to Re: I'm never going to be well, posted by Dinah on September 22, 2008, at 14:47:22
Posted by JayMac on September 22, 2008, at 17:37:31
In reply to Re: I'm never going to be well, posted by Dinah on September 22, 2008, at 14:47:22
Hugs!!!
The last time I was feeling completely miserable and depressed I emailed my T. She responded and suggested that I make a huge effort and plan things to do (going out with friends, exercising, running errands, etc). She also suggested that I take extra care of myself. Although I didn't FEEL like doing anything, I forced myself and the actions associated with being busy and taking care of myself make me feel better.
Keep us up to date =)
Posted by Partlycloudy on September 22, 2008, at 17:47:34
In reply to Re: I'm never going to be well, posted by Dinah on September 22, 2008, at 14:47:22
I think that part of what upsets me so much is knowing that so much of my energy is spent on managing myself - avoiding triggers, maintaining my environment to the best of my abilities - and trying not to be too hard on myself when I'm not able to adequately do that, either.
I haven't been able to get my head around (so to speak) the idea of my issues with my mental health being a chronic, actual, health problem that I have to treat just as I do my hypertension, my migraines, other conditions that I don't judge myself so harshly for having to treat myself for.
pc
Posted by Dinah on September 22, 2008, at 18:02:34
In reply to Re: I'm never going to be well, posted by JayMac on September 22, 2008, at 17:37:31
Unfortunately that's what caused the problem! :)
My husband isn't as happy as I am as a hermit, and of course my son needs his mom to be reasonably social, and my therapist is always encouraging me to develop a social network.
So yesterday I stretched myself socially further than I have in a long time. I prepared well for it, it went well, and I was very happy. I was thinking that this wasn't so bad after all, and was cheerfully contemplating taking another step forward.
Then it hit. Out of the blue. Perfectly happy to completely incapacitated.
It reminded me of the first time I gave blood. I was happily lying on the bed they had, and thinking that I would sign up to be a regular contributor because this wasn't bad at all. Then the nurse asked me with concern if I was ok, and I answered cheerfully that I was fine. Then the next thing I knew, I'd passed out. It took an hour or two to get me back on my feet, since I was young and had very low, borderline for giving, blood pressure at the time. They told me thank you and please don't give again.
I hate those sucker punches.
Posted by Dinah on September 22, 2008, at 18:13:20
In reply to Re: I'm never going to be well » Dinah, posted by Partlycloudy on September 22, 2008, at 17:47:34
I think my body is doing its best to hammer the point home with me. :(
I'd *like* to think that I can do anything, if I just try hard enough.
I have this mental picture of my nervous system as a bunch of electrical cords getting more and more frayed as time goes on causing little explosions and fires.
The hard part is that I don't know what's best to do. Is the Provigil making it worse or keeping me functional? Or both? Do the meds I take for psych purposes have a long term negative effect? Am I only thinking that I know how to relax? Should I take more meds so that any kindling effect is minimized? I know therapy helps keep me on even keel, and I know how to take meds prn to keep as stable as possible, and I know how to be careful of my environment. What do you do when all that isn't enough?
Sometimes I start wondering if this is somehow related to seizures. There is a strange resemblance (at least to my limited knowledge based entirely on doggie seizures) to migraines with aura, and to cataplexy. Then there's my shame attacks. Or maybe they're all related to migraines?
Argh. My sleep neurologist thinks I have a very interesting case. Just what I need. I'm interesting to a neurologist who is past middle age and has been doing this forever.
Posted by Dinah on September 22, 2008, at 18:37:08
In reply to (((((((((((Dinah)))))))))) (nm), posted by JoniS on September 22, 2008, at 16:10:08
I appreciate it.
It occurs to me that instead of avoiding those things that might overstimulate me, I could choose to structure the time around them.
I know, for example, that certain situations might trigger a migraine, but I don't avoid everything that could trigger me. If it's important to me, I just make sure I have some downtime and privacy afterward, that I have medications available, and that I do what I can to mitigate.
It's no different I guess.
Posted by muffled on September 22, 2008, at 20:43:31
In reply to Thanks » JoniS, posted by Dinah on September 22, 2008, at 18:37:08
Posted by DAisym on September 22, 2008, at 23:35:03
In reply to I'm never going to be well, posted by Dinah on September 22, 2008, at 14:16:09
I'm glad you pushed yourself and it went well. I want to encourage you to focus on this and not on the aftermath so much. Because there are a multitude of things that could cause a crash - not that I'm doubting your ability to read your own body. I just don't want you to get "tricked" into throwing the baby out with the bathwater.
Perhaps you need more practice. Baby-steps to build up your tolerance. That isn't to say that you shouldn't take care of yourself and avoid known triggers, etc. But sometimes exposure therapy really does work.
All that said, I think I understand those "I'll never be well" feelings. I'm struggling to make myself as safe as possible within a new relationship. And I often crumble and say it is too much trouble - it would be "easier" to just avoid all the potential triggers. But I know also, that this leaves me pretty isolated and stuck, which isn't healthy.
I'm proud of you for trying Dinah. You did very well.
Posted by Phillipa on September 22, 2008, at 23:42:24
In reply to Re: I'm never going to be well, posted by DAisym on September 22, 2008, at 23:35:03
Dinah you sound like me do too much and wham it hits the next day or a few days later. Was it flooding for you? I'm sorry you're so down and yes you can get better I do believe that. Love Phillipa
Posted by Tabitha on September 23, 2008, at 2:04:38
In reply to Re: I'm never going to be well » JayMac, posted by Dinah on September 22, 2008, at 18:02:34
So you went outside your comfort zone, and had a stress reaction to it. Don't take that as proof you'll "never get better". It's normal to feel stressed when you act outside your comfort zone. It sounds like it was a pretty big step for you, so naturally you'd react. Persist and over time it will get easier and your comfort zone will get larger.
Maybe you need to take a smaller step next time, or else prepare yourself for some backlash from that part of you that's afraid of change. Or maybe you'll be fine with this after your T can help you process it.
I'm glad to hear that you're taking steps like this. It seems part of you is ready to change.
Posted by seldomseen on September 23, 2008, at 7:45:05
In reply to I'm never going to be well, posted by Dinah on September 22, 2008, at 14:16:09
Maybe you will be well, maybe you won't. Life is certainly a crapshoot isn't it?
I do understand though. Sometimes I think those times in which I feel "normal" exist only to punctuate the rest of the times when I don't. Although I guess you could flip that and say the bad times exist to make the good times good. But whatever.
Sometimes we all have to (and certainly get to) howl at the moon so to speak about what has been dealt to us.
I would not be surprised at all, if some years down the road, your condition and others like it are classified as seizure disorders.
Hypersensitivity, certain types of migraines and even cataplexy just seem to me to be sub-threshold seizure conditions. While you don't have frank seizures, you may have a certain kind of absence seizure characterized by sleep.
The ironic thing is that a bump on the head as a child can potentially cause it.
All in all, I guess we are as well as we can be. We have certainly earned the right to define our own "well" as separate and distinct from what others do.
As far as not having a child. Total and utter poppycock. I can not and will not validate that thought.
Your son is a lucky lucky child to have a mom that is self aware, smart and clearly has a lot to offer.
But again, howling at the moon is certainly allowed.
Seldom.
Posted by WaterSapphire on September 23, 2008, at 8:50:07
In reply to I'm never going to be well, posted by Dinah on September 22, 2008, at 14:16:09
(((((DINAH)))))
There is so much I want to write here, but I don't know how to put it. Extreme sensitivity to stimuli (meaning noise, smell, anything...)
Do you feel like you are so sensitive to everything that you want to just hide from it all? Like you are sometimes running on adrenaline. Well, I feel like I am running on adrenaline with no energy and that probably doesn't make a heck of a lot of sense. Basically I am dealing with an abnormal stress level that seems to be about anything and everything there is. It is making me physically ill. I have no answers to why, and am not sure what is going on. I am sorry about all this. Unfortunately with me, now I have lost the ability to even bite my tongue anymore with things. The pea thing...I just was talking about my mom with the whole Princess and the pea story a month ago. To be fair I have always been oversensitive to everything since I was small, but now it is unmanageable anymore. Have you heard of sensory processing disorder. They refuse to add it to the dsm, but maybe you should check it out....
Have they run catecholamine and endocrine tests on you just to make sure nothing else is going on? Just a thought. I cannot take as much magnesium as I would like too, but it is the only thing that truly helps me ever. Unfortunately, I am having some flank pain issues from that it seems. I am trying to get my thoughts together, but I am just so worn out right now. I could no longer work because of not being able to handle any amount of stress. I have tried so many things and have to stay home and keep things as quiet as possible. I hate it. I don't know to what extremes you have to go to, but I really wish I could get a therapist right now. Hopefully I can someday soon. ((((DINAH)))) I am so sorry you gotta feel like this...
Posted by Dinah on September 23, 2008, at 10:31:29
In reply to Re: I'm never going to be well, posted by DAisym on September 22, 2008, at 23:35:03
Thanks, Daisy. I'm pretty proud of me too.
For all I consider myself a hermit by nature, I recognize the value of friends. It's good to find a group of people I really like and respect and enjoy. Because I trust them, to some extent, I felt able to take a chance. Now that my trust has been validated, I really want to take another step myself.
By the way, my husband is now fervently praying for my therapist's return. I don't think I'll hear anything about therapy from him soon. He is soooo enjoying hearing my processing of this experience. lol.
Posted by Dinah on September 23, 2008, at 10:35:45
In reply to Re: I'm never going to be well, posted by Phillipa on September 22, 2008, at 23:42:24
I really don't know what the heck it was. It came totally out of the blue with absolutely no anxious thoughts at all. I've experienced it before, but I've always associated it with bad experiences, not good ones. This was a new context for such an extreme response.
I have a long history of being able to handle stress in the moment, but then falling apart when the stress is over. My neurologist had a name for the ensuing migraine. Vacation migraine or something?
Posted by Dinah on September 23, 2008, at 10:40:00
In reply to Re: I'm never going to be well » Dinah, posted by Tabitha on September 23, 2008, at 2:04:38
Change is bad. Very bad. :)
I think to some extent, I'm changing against my own will. My therapist smiles, and assures me I am *not* growing up. I hope he's right.
I think when he comes back, it will be easier for me to process it. Although Babble helps with that too. My brain tends to think itself into tight pretzels without gentle unwindings.
Posted by Dinah on September 23, 2008, at 10:40:44
In reply to (((((((((((((((((((((((Dinah)))))))))))))))))))))) (nm), posted by muffled on September 22, 2008, at 20:43:31
It's really good to see you here. I've missed you.
Posted by Dinah on September 23, 2008, at 10:52:23
In reply to Re: I'm never going to be well » Dinah, posted by seldomseen on September 23, 2008, at 7:45:05
There is *such* a strong feeling of I don't know what associated with them. I can't describe it but it feels so real. Like a gear change in a car, the hum is different in my brain. Mild pressure, maybe, with an electrical buzz in the background. Like an electrical hat. :)
Gosh I sound weird.
I realized last night that I could never think I should have been spayed so as not to pass on my problems. That would mean my son wouldn't be here, and I can't believe he is anything but a positive in my life and to the world. He is so sweet and funny, and is teaching me about thoughtfulness every day. He's got this real gift for moral nuance. Some of the things I take for granted, or overlook, he notices and makes me think about. Who says it's us who teaches them?
Yes, howling at the moon. I like that. And yet you wonder where my positive regard for you comes from? :)
Posted by Dinah on September 23, 2008, at 11:15:56
In reply to DINAH, posted by WaterSapphire on September 23, 2008, at 8:50:07
Running on adrenaline with no energy sounds normal to me. :(
It sounds weird, but even the involuntary naps have nothing to do with real sleepiness, or even tiredness. I can be completely wired, yet feel an inexorable pull to sleep. It's not that I fall over. I can put it off for minutes, or even hours. But putting it off that long has a cost.
The hypersensitivity varies a lot. Sometimes I turn the volume down close to nothing on my TV and can hear a normal conversation three rooms away. Sometimes the slightest breeze feels like sandpaper on my skin. The wind hurts is what I think. Sometimes the vibration of the air conditioner through the floor or the computer passing down through the desk to the floor up to my chair is as clear to me as a touch on my arm. Sometimes I walk outside and wince, because the sun seems abnormally bright. (Although that seems to correlate perfectly to getting a migraine later in the day.)
My biggest (immediate) migraine trigger is lights or changes in barometric pressure. Hmmmm... I ought to try to figure out if I have more migraines in the subtropical climate here in the summer.
Much of the time I'm ok. And sometimes I'm totally oblivious to minor sensory input.
I'll look into those tests. I have this weird and totally innocuous thing that happens to me that most people think is weird. Looking it up, its' got something to do with acetylcholine and the dysregulation of the parasympathetic nerve system, or autonomic nerve system, or something. But I'd need to go back to school to understand any of it. Hey, I forgot to mention that one to the neurologist. He'd think I'm even more interesting than he already finds me. Sigh.
I had just started taking magnesium (I think) when I evacuated for Katrina. I never got back to it when I returned. I'll look into it again. Is that the one that is supposed to be calming? If I don't see any link to kidney stones, I'll try it again. I think I vaguely remember my urologist telling me to be careful with calcium supplements.
Thanks, Watersapphire. I hate to think that others have the same problems I do, but it's good to share experiences and what works.
Don't you think the absence in the DSM is a crying shame? I don't think the syndrome, or whatever you would call it, is particularly rare. It may vary in degree, but these are a lot of the things that have been considered "neurotic" over the ages. As the physiology of more and more of them are discovered, they move them into "real" medicine. But at the same time as they're recognizing that maybe these things can make a person neurotic, they're also throwing away the idea that they frequently don't occur separately, and it may be useful to recognize it as a whole and treat it as a whole.
Posted by Cal on September 23, 2008, at 12:25:29
In reply to Re: I'm never going to be well, posted by JayMac on September 22, 2008, at 17:37:31
((Dinah))
Posted by obsidian on September 23, 2008, at 18:31:13
In reply to I'm never going to be well, posted by Dinah on September 22, 2008, at 14:16:09
"go placidly amid the noise and haste and remember what peace there may be in silence"
I keep this quotation where I can see it at work, because I generally find myself chronically overwhelmed. Sometimes I think of it as the idle in a car that is running too high, the buzz, buzz, buzz of an electric fence, etc.
eventually the circuit breaker has to put a stop to it all
and Yes, you should DEFINITELY reproduce
Posted by WaterSapphire on September 23, 2008, at 21:52:25
In reply to Re: DINAH » WaterSapphire, posted by Dinah on September 23, 2008, at 11:15:56
Wow Dinah, you explain all that in such detail too. I have never heard about the situation dealing with the sympathetic nervous system. I would be more specific from reading your post, but I am feeling tired lol. At least I know that I am not alone here lol. I have issues with the sunlight. Sometimes the smells that normally would not bug people or that would not be so bad get to me, which makes other things even worse if they are not normally pleasant. Sometimes cat hairs or tiny nothings even in my bed sheets or on a couch will drive me nuts. I never feel totally comfortable. I am always asking hubby to turn the tv down cuz it seems to loud. I feel like a freak of nature. I hope you can get to the bottom of things, if you do let us know :)
Have an awesome day tomorrow
Posted by Phillipa on September 23, 2008, at 22:13:27
In reply to Re: DINAH » WaterSapphire, posted by Dinah on September 23, 2008, at 11:15:56
Jeez the beginning of this post almost sounded like the autistic child knew when lived at the beach he couldn't stand the feel of clohes and was acutely aware of wind, touch and feel. But then you changed at the end. Love Phillipa
This is the end of the thread.
Psycho-Babble Psychology | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.