The Good, the Bad, and the Ugly: Three years later

[robysue]

Three years ago tonight was my first night of sleeping with a CPAP in my own bedroom.

It was the start of a long and difficult adjustment period. The first three months were sheer hell. And I wound up with a signficant case of insomnia that has waxed and waned ever since then. But by October 2011 I was feeling better---indeed I was feeling like my old self---as in I was feeling as well as I had felt in my early 40s---some 10+ years before my OSA diagnosis. So in keeping with the theme that I introduced early in my journey into Hosehead land, here's a return to the Good, the Bad, and the Ugly of my journey:

The Good
The absolute best thing about PAPing is no more hand and foot pain. This was the first thing that started to improve (after 4 or 5 months of PAPing) and it's a very rare morning that I wake up with any hand and foot pain these days. This is the thing that keeps me going when the Bad gets very bad. I have no desire to return to the bad old days of waking up telling hubby that it felt like I slept with my hands and feet in fists all night long.

The knowledge that PAP can make me feel better is also a very important Good thing. Although right now, I'm stuck in a position that's less than Good. (More on that later.) From October 2011 to November 2012 I felt much better than I had in several years. I was waking up feeling rested every morning and I even felt refreshed on some mornings. During the best part of this period, I felt like I was back in my early 40s---a time in my life when I still had energy to do all those things I needed to do and felt pretty decent every mornng when I got up. (This was before I started waking with hand and foot pain every morning.)

On my best days I still have optimism that with my current medical team(s) the insomina, the current BiPAP problems, the headaches, the TMJ, and the anger will be brought under control and I'll once again feel as good as I did between October 2011 and November 2012.

The current sleep doc (sleep doc #4) actually seems willing to work with me on my sleep issues. He's willing to make suggestions and let me make the decision about whether to follow through. He also uses email so the phone tag is minimized.

The friends and community that I've found here remains a very special part of my life.


The Bad
My sleep remains far more fragile than it should be.

The insomnia is back. It raised its ugly head again in November 2012. At the same time, the headaches came back (and morphed into chronic tension headaches; the TMJs started acting up yet again; and the anger problems returned. For a six week period starting last November things were spiraling out of control and things looked very dark. The CPAP didn't seem to directly influence this stuff, but it sure wasn't "helping" in any identifiable way: As stuff started to spiral out of control, the daytime weariness and exhaustion that I'd experienced right after starting PAP returned.

On Friday I reluctantly agreed to try a small dose of Ambien on a nightly basis for a while at the suggestion of my sleep doctor. He's not at all sure that it will do any good, but for the time being it's worth trying. (He had me try melatonin earlier, but that aggravated the active TMJ problems.) The main reason I've agreed to take the 2.5 mg dose of Ambien nightly is that it does help me get to sleep before the anger starts on the nights where the sensory overload from Kaa is overwhelming to me.

During May and June, my AHI started to creep up: It's under 5.0 on all but the rarest isolated nights, but the frequency of nights with AHIs above 3.0 has grown. And by the time the AHI hits 3.0 I typically feel it. When it's above 4.0, the hand and foot pain returns. No ideas on why this is happening: Two additional sleep studies this summer showed an untreated AHI of about 15 and a treated AHI of less than 2.0. Maybe it's allergies. Maybe it's just that I'm so restless at night and many of my events occur during transition to sleep periods---and that is true on the sleep studies as well as my own machine's data.

The aerophagia is back, but not as bad as it was when I first stared. I don't seem to wake up with basketballs in my stomach, but in the morning I wake with an overfull feeling in my stomach as often as not. Once I'm vertical for a while it tends to dissipate. Still, it's a major irritant and it can make breakfast pretty miserable on the worst mornings.

The sensory overload when trying to get to sleep with the mask on is back big time. It's clearly feeding the insomnai, but the more alarming thing about the return of the sensory overload is that it is a major source of the anger that's returned in the last month or so. When I was feeling at my best while on PAP, the nighttime anger had all but disappeared. But in the last month I've had screaming hissy fits at Kaa four or five times: I go to bed extremely sleepy (as in not being able to keep my eyes open) and I put the mask on and turn Kaa on. And 5-20 minutes later, I notice that irritating "tickle" in the back of my throat from Kaa blowning air down my airway. Or I feels air blowing in my eyes---usually through my tear ducts. Or the hose is magnifying the sound of my own breathing and it's too distracting. Or I feel like a balloon that's being blown up. (I can feel the pressure building in my airway when I first turn Kaa on and I still dislike this feeling.) And on the worst nights, enough of these issues all come together and I find myself WIDE AWAKE as though turning on Kaa was rather like drinking a strong double shot of caffeinated expresso. And that's when I loose it. I almost feel like I've gone back to the period where I was working hard on learning how to ignore all the sensory stimuli.

After the two sleep studies this summer showed significant insomnia and large numbers of arousals and wakes and nothing unexpected as far as the OSA was concerned, the sleep doc ordered and ActiGraph test where information about my movements during the night were measured; that test showed that over a 10 day period in my own bed (and using Kaa), I was experiencing an average of 9.5 wakes per night with an average length per wake of 5.5 minutes. This correlated reasonably well with my own sleep journal. The ActiGraph data also verified the circadian rhythm problem has gotten worse over the last 9 months or so.


The Ugly
While I felt much better than I had in years between October 2011 and November 2012, I now feel almost as bad as I felt during the dark early days of the First War on Insomnia (from December 2010 through June 2011). It's not quite as bad as the period right after I started PAPing, but right now I'm worried that things are beginning to spin out of control again.

I am simply tired of feeling sick all the time. And all the things that I'm supposed to do for my health seem to leave me exhausted rather than making me feel better. And at this point, I'm simply out of self-discipline. There are things that I know would make me feel better---such as yoga and meditation---but I simply can't find the will to do them. It's like putting on the hose every night is as much as the poor irrational and highly emotional part of my brain can handle. The rational part knows that I need to find the time and make myself do things that I know will make me feel better even if I am exhausted. But these days, the rational brain is outvoted by the irrational, emotional brain.

On my worst days, I feel as though I'll never feel well again. Too many doctor appointments for too many conditions really get me down; And the conditions that trigger all these appoinments? Most of them were diagnosed AFTER my OSA diagnosis, and all of of them went "critical" after the OSA diagnosis. It's still extremely difficult for me to accept the multiple doctor appointments each and every month.

I have no will power to make myself get up at 7:30 or 8:00 AM every morning---as in seven days a week. I know this would do a lot to help bring the insomnia under control, but I just can no longer make myself do it. And the irregular wake times make the bedtimes more irregular, which in turn feeds both the bedtime insomnia and the sleep maintenance insomnia.

I still miss a whole lot of things about my pre-CPAP life: I miss the way my hubby smells at night. I miss being able to talk to hubby while in bed and falling asleep while talking to him. (Yes, I know I can talk and then mask up. But turning over to mask up officially ends the conversation AND it tends to wake me up and ruin my "sleepy" feeling.)


Conclusion
I know much more about myself than when I started this journey three years ago. I'm glad that I've been able to keep PAPing since I do think it makes a difference to my long term health and it makes a big difference in terms of daily pain. I wish, however, that I could get back to the way I feeling that I had during that year long period from October 2011 to November 2012. It's not that everything was wonderful during that time frame, but physically I felt 10-15 years younger and I had the energy to deal with the various crises that came my way during that time frame. I was capable of getting what felt like a full night's sleep and I was waking up feeling rested and mostly refreshed on a regular basis. And I want that back. But it's been a very long 10 months of slogging through dealing with all the problems I thought I'd licked.

Wish me luck as I continue on this journey.

[ems]

Hi Robysue... you seem to articulate your thoughts so perfectly that I always hesitate to comment on your posts. I have somewhat similar problems which seemed to improve and then got worse. I didn't use the machine for many months.

I have a PC and a sleep specialist I like, especially my PC. In July she encouraged me to get back on the machine which I somehow managed to do. I think I got scared because she made a lot of sense. It felt like I started all over again, which in actuality I did. I had even forgotten how to set up and put on the mask. I bought a new CPAP bed pillow which I thought would help but really hasn't. I discovered that an old soft pillow seems to put less pressure on the side I sleep on. I don't feel the straps as much. All this to say that I understand completely where you are coming from, including the insomnia. I've tried all the sleep tips you mentioned and sometimes they work and most times they don't. I decided a while ago to take something to help me sleep. I'm careful not to take more than is prescribed but honestly, if I'm psychologically addicted at this point in my life, I don't give a damn.

I don't have anything to add that would help ... you know waaay more about sleep apnea than I do... but I hope that this is just a rough patch and that things will turn around for the better. For better or worse things seldom stay the same and I hope things begin to resolve for you. A new mask maybe? or a new bed pillow?... you never know.

[49er]

Hi robysue,

I definitely empathize with your situation. I hate to be negative but as I said in the other thread, I just feel there is a subset of people who are going to have extreme difficulty with pap therapy no matter what they do.

By the way, I think you have every right to be angry because my god, you did everything possible to make pap therapy only to be punched in the face for your efforts. So personally, I don't see that as a bad thing.

I wish you all the luck in the world.

49er

Three years ago tonight was my first night of sleeping with a CPAP in my own bedroom.

It was the start of a long and difficult adjustment period. The first three months were sheer hell. And I wound up with a signficant case of insomnia that has waxed and waned ever since then. But by October 2011 I was feeling better---indeed I was feeling like my old self---as in I was feeling as well as I had felt in my early 40s---some 10+ years before my OSA diagnosis. So in keeping with the theme that I introduced early in my journey into Hosehead land, here's a return to the Good, the Bad, and the Ugly of my journey:

The Good
The absolute best thing about PAPing is no more hand and foot pain. This was the first thing that started to improve (after 4 or 5 months of PAPing) and it's a very rare morning that I wake up with any hand and foot pain these days. This is the thing that keeps me going when the Bad gets very bad. I have no desire to return to the bad old days of waking up telling hubby that it felt like I slept with my hands and feet in fists all night long.

The knowledge that PAP can make me feel better is also a very important Good thing. Although right now, I'm stuck in a position that's less than Good. (More on that later.) From October 2011 to November 2012 I felt much better than I had in several years. I was waking up feeling rested every morning and I even felt refreshed on some mornings. During the best part of this period, I felt like I was back in my early 40s---a time in my life when I still had energy to do all those things I needed to do and felt pretty decent every mornng when I got up. (This was before I started waking with hand and foot pain every morning.)

On my best days I still have optimism that with my current medical team(s) the insomina, the current BiPAP problems, the headaches, the TMJ, and the anger will be brought under control and I'll once again feel as good as I did between October 2011 and November 2012.

The current sleep doc (sleep doc #4) actually seems willing to work with me on my sleep issues. He's willing to make suggestions and let me make the decision about whether to follow through. He also uses email so the phone tag is minimized.

The friends and community that I've found here remains a very special part of my life.


The Bad
My sleep remains far more fragile than it should be.

The insomnia is back. It raised its ugly head again in November 2012. At the same time, the headaches came back (and morphed into chronic tension headaches; the TMJs started acting up yet again; and the anger problems returned. For a six week period starting last November things were spiraling out of control and things looked very dark. The CPAP didn't seem to directly influence this stuff, but it sure wasn't "helping" in any identifiable way: As stuff started to spiral out of control, the daytime weariness and exhaustion that I'd experienced right after starting PAP returned.

On Friday I reluctantly agreed to try a small dose of Ambien on a nightly basis for a while at the suggestion of my sleep doctor. He's not at all sure that it will do any good, but for the time being it's worth trying. (He had me try melatonin earlier, but that aggravated the active TMJ problems.) The main reason I've agreed to take the 2.5 mg dose of Ambien nightly is that it does help me get to sleep before the anger starts on the nights where the sensory overload from Kaa is overwhelming to me.

During May and June, my AHI started to creep up: It's under 5.0 on all but the rarest isolated nights, but the frequency of nights with AHIs above 3.0 has grown. And by the time the AHI hits 3.0 I typically feel it. When it's above 4.0, the hand and foot pain returns. No ideas on why this is happening: Two additional sleep studies this summer showed an untreated AHI of about 15 and a treated AHI of less than 2.0. Maybe it's allergies. Maybe it's just that I'm so restless at night and many of my events occur during transition to sleep periods---and that is true on the sleep studies as well as my own machine's data.

The aerophagia is back, but not as bad as it was when I first stared. I don't seem to wake up with basketballs in my stomach, but in the morning I wake with an overfull feeling in my stomach as often as not. Once I'm vertical for a while it tends to dissipate. Still, it's a major irritant and it can make breakfast pretty miserable on the worst mornings.

The sensory overload when trying to get to sleep with the mask on is back big time. It's clearly feeding the insomnai, but the more alarming thing about the return of the sensory overload is that it is a major source of the anger that's returned in the last month or so. When I was feeling at my best while on PAP, the nighttime anger had all but disappeared. But in the last month I've had screaming hissy fits at Kaa four or five times: I go to bed extremely sleepy (as in not being able to keep my eyes open) and I put the mask on and turn Kaa on. And 5-20 minutes later, I notice that irritating "tickle" in the back of my throat from Kaa blowning air down my airway. Or I feels air blowing in my eyes---usually through my tear ducts. Or the hose is magnifying the sound of my own breathing and it's too distracting. Or I feel like a balloon that's being blown up. (I can feel the pressure building in my airway when I first turn Kaa on and I still dislike this feeling.) And on the worst nights, enough of these issues all come together and I find myself WIDE AWAKE as though turning on Kaa was rather like drinking a strong double shot of caffeinated expresso. And that's when I loose it. I almost feel like I've gone back to the period where I was working hard on learning how to ignore all the sensory stimuli.

After the two sleep studies this summer showed significant insomnia and large numbers of arousals and wakes and nothing unexpected as far as the OSA was concerned, the sleep doc ordered and ActiGraph test where information about my movements during the night were measured; that test showed that over a 10 day period in my own bed (and using Kaa), I was experiencing an average of 9.5 wakes per night with an average length per wake of 5.5 minutes. This correlated reasonably well with my own sleep journal. The ActiGraph data also verified the circadian rhythm problem has gotten worse over the last 9 months or so.


The Ugly
While I felt much better than I had in years between October 2011 and November 2012, I now feel almost as bad as I felt during the dark early days of the First War on Insomnia (from December 2010 through June 2011). It's not quite as bad as the period right after I started PAPing, but right now I'm worried that things are beginning to spin out of control again.

I am simply tired of feeling sick all the time. And all the things that I'm supposed to do for my health seem to leave me exhausted rather than making me feel better. And at this point, I'm simply out of self-discipline. There are things that I know would make me feel better---such as yoga and meditation---but I simply can't find the will to do them. It's like putting on the hose every night is as much as the poor irrational and highly emotional part of my brain can handle. The rational part knows that I need to find the time and make myself do things that I know will make me feel better even if I am exhausted. But these days, the rational brain is outvoted by the irrational, emotional brain.

On my worst days, I feel as though I'll never feel well again. Too many doctor appointments for too many conditions really get me down; And the conditions that trigger all these appoinments? Most of them were diagnosed AFTER my OSA diagnosis, and all of of them went "critical" after the OSA diagnosis. It's still extremely difficult for me to accept the multiple doctor appointments each and every month.

I have no will power to make myself get up at 7:30 or 8:00 AM every morning---as in seven days a week. I know this would do a lot to help bring the insomnia under control, but I just can no longer make myself do it. And the irregular wake times make the bedtimes more irregular, which in turn feeds both the bedtime insomnia and the sleep maintenance insomnia.

I still miss a whole lot of things about my pre-CPAP life: I miss the way my hubby smells at night. I miss being able to talk to hubby while in bed and falling asleep while talking to him. (Yes, I know I can talk and then mask up. But turning over to mask up officially ends the conversation AND it tends to wake me up and ruin my "sleepy" feeling.)


Conclusion
I know much more about myself than when I started this journey three years ago. I'm glad that I've been able to keep PAPing since I do think it makes a difference to my long term health and it makes a big difference in terms of daily pain. I wish, however, that I could get back to the way I feeling that I had during that year long period from October 2011 to November 2012. It's not that everything was wonderful during that time frame, but physically I felt 10-15 years younger and I had the energy to deal with the various crises that came my way during that time frame. I was capable of getting what felt like a full night's sleep and I was waking up feeling rested and mostly refreshed on a regular basis. And I want that back. But it's been a very long 10 months of slogging through dealing with all the problems I thought I'd licked.

Wish me luck as I continue on this journey.

[cflame1]

RobySue... you do realize that with chronic pain (TMJ)... can come anger, right? Doesn't with me, but I've known people that it's happened to.

[khauser]

Hi RobySue,
That's some roller coaster you're on. That'd take the energy and commitment out of anyone!

My daughter (20s) and ex-wife both have bad TMJ issues ... my daughter severely restricts what she eats due to pain. And as another poster mentioned, any chronic pain issue has a huge host of side effects. I've seen anger, and generated some (I have a chronic back problem after surgery).

What you are going through would cause depression in the happiest person I know, and depression feeds the cyclic problems of insomnia and chronic pain. That's the only thing I didn't get from your story ... whether you might think you're depressed and might want to treat that. It could be YAP (yet another pill), but talking to an impartial person can make a huge difference. I think a lot of us hang around here for some of that benefit...

I hope things turn around soon!! Stay in touch.

[carbonman]

I am simply tired of feeling sick all the time.
Wish me luck as I continue on this journey.

robysue, thanks for sharing.
I have followed your journey. When you first started, I had great empathy for
your insomnia problems. I had the same kind of thing before cpap. Years 2-4 of
cpap for me were great. Since I lost my sister a year ago, so much has changed.
I have not been able to really come to terms w/the loss.
The past few months we have taken on remodeling the house I grew up in.
My dad wants my wife and I to live there and it will be mine when he passes.
It has not been an easy path to follow.
It seems like w/out my sister, nothing in the world is right.

So it goes w/my sleep. I can't let go of things. My tried and true Krakow tools don't
work. My PTSD has inflamed my sense of being. This has all contributed to very
fragmented sleep, again. I hate it. I am almost back to pre-cpap existance.
I struggle to maintain at work. I struggle to find time and motivation to take care
of myself. Change just washes over me and I am smashed against the unknown shore.

So, where am I going here......you are not alone.... I am not alone.
A few day ago, I stumbled onto a book:
http://www.heal-post-traumatic-stress.c ... radox.html
I has helped me. It is one of those books that is an easy read, but requires
alot of introspection to get and use the message.

I wish you all the luck and nothing but the best on your journey.
I'll see you on the road.

[Sir NoddinOff]

That's a sad post RobySue, my heart goes out to you.

I'm assuming from your pressure settings that you are using a PR BiLevel machine. Just a thought, but maybe it's time to jump into the ASV pool. If your anxiety and illness are as bad as you say, what is there to lose? Sometimes a new level of treatment will derail some or all of your old problems, especially that nasty insomnia monster. Talk to your doctor first, of course, but don't let the doc put you off if you make up your mind to go with ASV. Hope things get better no matter what path you take.

[49er]

That's a sad post RobySue, my heart goes out to you.

I'm assuming from your pressure settings that you are using a PR BiLevel machine. Just a thought, but maybe it's time to jump into the ASV pool. If your anxiety and illness are as bad as you say, what is there to lose? Sometimes a new level of treatment will derail some or all of your old problems, especially that nasty insomnia monster. Talk to your doctor first, of course, but don't let the doc put you off if you make up your mind to go with ASV. Hope things get better no matter what path you take.

Hi SNO,

Regarding insomnia and ASV machines, here is a link to a study I previously posted:

http://www.scitechnol.com/2325-9639/2325-9639-2-107.php

I did start another thread or wrote a post (too tired to find it) about how I was perplexed that an ASV machine could be helpful for people with insomnia and there were contrasting opinions about this.

49er

[robysue]

I definitely empathize with your situation. I hate to be negative but as I said in the other thread, I just feel there is a subset of people who are going to have extreme difficulty with pap therapy no matter what they do.

As someone who has followed your own long and difficult journey in Hosehead land, I have to say I agree with you. There is a subset of people who for whatever reason seem to have extreme difficulty with PAP therapy. And I sure wish that someone, somewhere would get interested in studying that pool of patients, 'cause I suspect that it is a significant contributor to the oft quoted statistic that "50% of PAPers give up on therapy in the first year."

Regardless of that: I was feeling better for about a year (Oct. 2011 to Nov. 2012). As in substantially better than I felt during the first 6-8 months of therapy and better than the last two or three years pre-PAP. And I'm greedy: I want to feel that good again. And I want to feel that good NOW. But I'll settle for getting back to feeling that good sometime in the not too distant future. But I sure hope it doesn't take another year of working on the headaches, the insomnia, the TMJ, and the PAPing to get back there.

[robysue]

RobySue... you do realize that with chronic pain (TMJ)... can come anger, right? Doesn't with me, but I've known people that it's happened to.

and

By the way, I think you have every right to be angry because my god, you did everything possible to make pap therapy only to be punched in the face for your efforts. So personally, I don't see that as a bad thing.

and

My daughter (20s) and ex-wife both have bad TMJ issues ... my daughter severely restricts what she eats due to pain. And as another poster mentioned, any chronic pain issue has a huge host of side effects. I've seen anger, and generated some (I have a chronic back problem after surgery).

Whether the anger is justified or not, whether the anger is triggered by the pain or not, the sad fact is: The anger has become a significant negative in my life. There are times where I feel as though it is eating me up alive. And I don't like the like of snarly person I've become because of the anger.

So working on the anger is something I'm doing. I wish I were more effective at diffusing the anger. But c'est la vie.

On good days, it doesn't bother me too much. On bad days, it consumes me.

And unfortunately the anger and pain the conspire to set up a nasty feedback loop: The more pain, the more anger, and the more anger, the more pain.

[robysue]

Carbonman,

I am so sorry for the loss of your sister. It's true that it's been a year. But holes in our heart don't heal all that well and I know what you mean when you say:

It has not been an easy path to follow.
It seems like w/out my sister, nothing in the world is right.

I wish you well on finding that elusive creature called a truly good night's sleep.

I'll also look up the book you suggest even though I've nothing in my history that should have triggered PTS.

[robysue]

What you are going through would cause depression in the happiest person I know, and depression feeds the cyclic problems of insomnia and chronic pain. That's the only thing I didn't get from your story ... whether you might think you're depressed and might want to treat that. It could be YAP (yet another pill), but talking to an impartial person can make a huge difference. I think a lot of us hang around here for some of that benefit...

This reminds me of another funny (in a weird, disturbing way, not a humorous way) thing about my ongoing journey:

During the darkest days of my adjustment period, sleep docs #1 and #2 and headache doc #1 all (independently?) decided that the root cause of my adjustment problems was a mood disorder. Sleep docs #1 and #2 attributed it vaguely to either bipolar or depression or severe anxiety; headache doc #1 was sure it was bipolar. Once "mood disorder" got in my charts, it totally ruined my then working relationship with my former PCP: Every time I went in for anything, I'd be lectured at for not wanting to take the Fosamax for osteoporosis AND I'd be told I needed to take a mood stabilizer, antidepressant, or anti-anxiety pill---which would depend on which PA, nurse, or doctor saw me that day.

At the insistence of sleep doc #1 I started seeing a psychologist to work on anger management issues. (It's helped some.) At the insistence of headache doc #1, I started seeing a psychiatrist. This was right after I had to stop taking the lamictal prescribed by headache doc #1 for migraine prevention due to severe, negative mood changes (including some that were fast skirting towards suicidal) at the minimal dose of lamictal---I didn't even make it to the second of four planned ramp-ups in dosage. I've continued to see both the psychiatrist and the psychologist because they've both proven very useful to me on helping me navigate this difficult journey.

Here's where it gets funny: The psychiatrist has told me that whatever mood disorder I might have, it's relatively minor and that I do NOT need to be on any kind of mood medication given my past history of not reacting well to three different migraine prophylatic meds that all have either on label or off label use as mood stabilizers. The psychologist did give me a screening questionaire for depression after stuff started to deteriorate last November. It was right after I had been told by my PCP that I needed to take valium because I'd come in complaining about vertigo that I thought (and still think) was related to a virus settling in my inner ear. I was lividly mad at the time at the PCP as well as sleep doc #2 (for a variety of reasons) and headache doc #1. The questionaire showed some minor depression (as in who wouldn't have some with what I've been through), but nothing severe enough where the psychologist thought meds might be useful. And when I saw the psychiatrist later that month, he basically told me: Fire the damn doctors and be careful which medical records you have forwarded to the new doctors. He helped me get into quick appointments with my current sleep doc and my current headache doc and gave me a referral to his own PCP. I've been happy with the new medical team: They seem to be willing to listen to my actual symptoms and work with me on getting me back where I want to be.

[Loreena]

I'm saying special prayers for you, robysue. I'm having a hard time too, with this good day/bad day thing, though my problem is with my tongue, which I'm hoping to get cleared up this weekend with a flight to California and an appointment to see a dentist who specializes in TMJ and oral appliances made for that problem. I'm always hoping the best for you.

[khauser]

What you are going through would cause depression in the happiest person I know, and depression feeds the cyclic problems of insomnia and chronic pain. That's the only thing I didn't get from your story ... whether you might think you're depressed and might want to treat that. It could be YAP (yet another pill), but talking to an impartial person can make a huge difference. I think a lot of us hang around here for some of that benefit...

This reminds me of another funny (in a weird, disturbing way, not a humorous way) thing about my ongoing journey:

During the darkest days of my adjustment period, sleep docs #1 and #2 and headache doc #1 all (independently?) decided that the root cause of my adjustment problems was a mood disorder. Sleep docs #1 and #2 attributed it vaguely to either bipolar or depression or severe anxiety; headache doc #1 was sure it was bipolar. Once "mood disorder" got in my charts, it totally ruined my then working relationship with my former PCP: Every time I went in for anything, I'd be lectured at for not wanting to take the Fosamax for osteoporosis AND I'd be told I needed to take a mood stabilizer, antidepressant, or anti-anxiety pill---which would depend on which PA, nurse, or doctor saw me that day.

At the insistence of sleep doc #1 I started seeing a psychologist to work on anger management issues. (It's helped some.) At the insistence of headache doc #1, I started seeing a psychiatrist. This was right after I had to stop taking the lamictal prescribed by headache doc #1 for migraine prevention due to severe, negative mood changes (including some that were fast skirting towards suicidal) at the minimal dose of lamictal---I didn't even make it to the second of four planned ramp-ups in dosage. I've continued to see both the psychiatrist and the psychologist because they've both proven very useful to me on helping me navigate this difficult journey.

Here's where it gets funny: The psychiatrist has told me that whatever mood disorder I might have, it's relatively minor and that I do NOT need to be on any kind of mood medication given my past history of not reacting well to three different migraine prophylatic meds that all have either on label or off label use as mood stabilizers. The psychologist did give me a screening questionaire for depression after stuff started to deteriorate last November. It was right after I had been told by my PCP that I needed to take valium because I'd come in complaining about vertigo that I thought (and still think) was related to a virus settling in my inner ear. I was lividly mad at the time at the PCP as well as sleep doc #2 (for a variety of reasons) and headache doc #1. The questionaire showed some minor depression (as in who wouldn't have some with what I've been through), but nothing severe enough where the psychologist thought meds might be useful. And when I saw the psychiatrist later that month, he basically told me: Fire the damn doctors and be careful which medical records you have forwarded to the new doctors. He helped me get into quick appointments with my current sleep doc and my current headache doc and gave me a referral to his own PCP. I've been happy with the new medical team: They seem to be willing to listen to my actual symptoms and work with me on getting me back where I want to be.

Wow.
Well, I need to be careful here, because the last thing I meant to imply is that it is "all in your head", which I know is a common trait among medical practitioners.

I also meant to say something that I think someone else might have been getting to: You need to have ONE doctor be responsible for you as a whole entity. The modern practice of specializing often makes it quite difficult when Dr. A is treating symptom 1, Dr. B is treating symptom 2, and it turns out the two treatments are counter-productive! My favorite doctor is my Family Physician. (By that I mean his "specialty" is family medicine.) NOBODY gets to change my treatment without him hearing about it first ... that's MY rule.

[DoriC]

Wow.


I also meant to say something that I think someone else might have been getting to: You need to have ONE doctor be responsible for you as a whole entity. The modern practice of specializing often makes it quite difficult when Dr. A is treating symptom 1, Dr. B is treating symptom 2, and it turns out the two treatments are counter-productive! My favorite doctor is my Family Physician. (By that I mean his "specialty" is family medicine.) NOBODY gets to change my treatment without him hearing about it first ... that's MY rule.

Roby, I'm truly sorry to hear what you've been enduring. It seems that you are clearly aware of all your medical issues but I agree with Kevin, there doesn't seem to be anyone who's really in charge who gets the whole picture. Our PCP is the Captain of our team, he knows us and our medical history better than anyone and on the rare occasions that we stray to a "specialist" on our own, we always get in trouble. As an example, I decided to see a GI to deal with some symptoms I was experiencing and he gave me a quick diagnosis and an RX. Something told me to check with my family Dr to get his opinion of the drug and the GI's diagnosis and he was the one who reminded me of the time I landed in the ER when another "specialist" gave me the same RX(I had completely forgotten) but he didn't!. He also didn't agree with the dx which could have become serious, and a simple change in my diet proved him right. (Lactose Intolerant). If there's one Dr you really trust who will take charge of your medical care and if necessary, refer you to his own choice of specialists who he prefers to interact with,all the reports he receives will be in your one file. I hope you get this resolved soon and can get back to helping others solve their problems.