![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 13 to 37 of 37. Go back in thread:
Posted by Adam on July 13, 2001, at 19:49:59
In reply to Re: I may need help.... » Adam, posted by Zo on July 13, 2001, at 18:00:06
Sorry, Zo, I did misunderstand. Perhaps I should look into something like that.
> No, no, Adam, reread my post. I'm saying an MD, but in some kind of alterntive or wholistic type practice. These are the ones who won't blanch at unusual symptoms, and if it's someone who works with CFS-FM, chances are they are also used to prescribing psychoactives. Okay?
>
> Zo
Posted by susan C on July 13, 2001, at 20:32:46
In reply to Re: I may need help...., posted by Adam on July 13, 2001, at 18:17:28
> I will also add they don't listen.
Adam,
I know you are really struggling right now, your posts are VERY clear about what is happening to you. I think you are probably smarter than a lot of the docs you come across (there are a lot of 'average' docs out there) I wish you could see my pdoc, he would talk to you and try to figure it out and know who was worth seeing in other specialties, but he is in WA.
Please bear with me, I couldn't help but find your story of the ER doc encounter amusing in a way. Many years ago my eye really hurt. It was the middle of the night, I went to the ER. I am sitting on the examining table and in shuffles, I mean SHUFFLES, the doc, in his socks, rubbing his eyes from sleep. He must have Just Woken Up. He looked in my eye...said, 'nothing there, I'll patch it and go see your eye doc tomorrow'. With the eye immobilized I go see the eye doc, he flips my lid with a q-tip and lifts out a bit of cinder (from the wood stove).When my kids were little I removed a lot of things from their eyes with that technique.
I can still see that ER doc in his socks. ;o)
Posted by Adam on July 13, 2001, at 21:12:19
In reply to I may need help...., posted by Adam on July 13, 2001, at 7:14:58
Just grabbed my handy-dandy Stedmans...
somatization: The process by which psychological needs are expressed in physical symptoms; e.g., the expression or conversion into physical symptoms of anxiety, or a wish for material gain associated with a legal action following and (sic) injury, or a related psychological need. SEE ALSO somatization disorder.
Well, here's an interesting hypothesis...
"The patient complains of strange physical symptoms including but not limited to fatigue; hot and cold flashes; flushing; arthritic pain, mostly in lower extremities; occasional tachycardia; sensation of superficial "pressure" in face, upper neck reminiscent of sinus congestion. Patient displays anxiety, describing symptoms as "bizarre". Patient shows tendancy to self-diagnose, coupling relatively high medical literacy with vivid imagination.
Patient history reveals dual-diagnosis of major depressive disorder and somatic obsession, including hypersensitivity to percieved flaws in facial features, as well as another "acute" homophobic sexual obsession. Patient currently on antidepressant therapy (MAOI, selegiline hydrochloride, 15mg b.i.d.), and has undergone behavioral therapy for obsessive-compulsive disorder. Patient responded well to both treatments. Patient has prior history of hospitalization for depression, as well as electroconvulsive therapy. Patient describes traumatic childhood, having lost maternal parent to cancer at age 7-8, and having suffered physical and emotional abuse from paternal parent.
Patient describes recent period of emotional stress related to a camping trip, where patient developed a romantic interest in another participant. Patient anxiety over this experience relates to conflicted feelings due to current, long-term monogamous relationship with another woman. Patient describes current relationship as stable and satisfying, and has not persued the other party as a paramour.
The patient claims first hints of physical symptoms occurred during camping trip, where he met the woman he became infatuated with. Patient reveals he asked her to drive his car home with him, due to feelings of dizzyness and fatigue.
Concurrence of onset of physical symptoms and the distressing romantic encounter point to possible somatization related to conflict surrounding "inappropriate" sexual interest in another woman, coupled with fears of said threat to current amorous relationship. Patient history of loss of parent and prolonged parental abuse predisposes for feelings of excessive guilt, difficulty with intimacy, and fears of abandonment, which may be manifested in aberrant behavior, possibly to precipitate conflict and relive childhood traumas. Physical symptoms are likely manifestation of schema where patient seeks superficial reassurance and/or sympathy from surrogate parent-figure only to experience distress related to fears or anticipation of loss."
Yes, it seems be a good theory except for the fact that it is complete horseshit. I don't think my hypothtical "diagnosis" is that implausible, so far as I might be likely to encounter it, should all be revealed to my health care providers. The comedy of it would be no one would guess that such a thing would have occured to me, the patient, already. Even if it reached the point of discussion, and I discounted it, well, that's denial, right? I might need a fair amount of convincing, maybe even months of therapy if my symptoms persisted. Any sequellae following acute signs of imagined infection would simply be more somatizations, and product of a mind familiar with the progression of Lyme disease. I dreampt it all up. After all, I have a psychiatric disorder. I'm mentally ill. Inexplicable physical symptoms are not what they seem. It's obvious, elementary.
I guess this is the kind of thing I have to be aware of myself to avoid diagnostic abuse. Gee do I sound paranoid, am I convinced of vitimization? Oh, more fertile psychodynamic ground to explore. The possiblities are as endless as the diagnosticians imagination, and as subjective as a Rorschach test.
Posted by Zo on July 13, 2001, at 22:29:53
In reply to Hey, here's a good diagnosis..., posted by Adam on July 13, 2001, at 21:12:19
Excellent term! I think everybody on the board should be aware of it. . .
Just wanted to mention, if the facial numbness is episodic, I would look at some type of seizure. . .
And if you go around being that articulate and assertive to poor overworked "just doing my job" MDs, you're not exactly going to be welcomed by the medical community with open arms!
Best,
Zo
Posted by Jane D on July 14, 2001, at 0:11:13
In reply to Hey, here's a good diagnosis..., posted by Adam on July 13, 2001, at 21:12:19
Adam,
I've been very moved reading your postings over time. Enjoyed isn't quite the right word - I remember one that made me cry. But then, you've had me laughing as well.It sounds like Lyme is a real possibility. Certainly if I were trying to pigeonhole you into risk categories I'd pick the outdoor/Lyme connection over mental illness just as you have done. I also wouldn't worry yet about the arguments over whether chronic lyme exists. If you have it you probably have the run of the mill ordinary kind. At least wait until your test comes back negative before you worry about whether a negative test is invalid.
I've noticed some doctors' tone changes a little when they read my list of meds. I haven't had a problem yet but then I haven't been seriously ill apart from the depression yet either. That's just a matter of time and/or aging I'm sure. Your experience outrages and frightens me. At the same time I don't entirely blame a general practitioner for considering depression. Every time I get the flu I assume I'm relapsing until I suddenly realize that, not only can I barely breathe, but neither can anyone else I've come in contact with.
Is there any chance you can get your psychiatrist to vouch for you to whatever other doctor you see? If not, that might be a good reason to look for another psychiatrist once this immediate problem is resolved. It might even be worth going outside the HMO if it got you someone you could build a long term relationship with and who was willing to intervene when necessary to convince other doctors that not all problems are psychiatric.
Good luck and don't give up.
Jane
PS Be very careful with your hypotheses. You've got the jargon down far too well. Even now, some student is probably preparing to work your post into a paper called "The Internet as a catalyst for insight in somatizing patients".
PPS Diagnostic abuse is indeed a great term.
Posted by Adam on July 14, 2001, at 3:21:57
In reply to I may need help...., posted by Adam on July 13, 2001, at 7:14:58
So I awaken bolt upright and on a hunch run to my PC and start searching. Dangerous. Anyway, I've come up with another candidate. It's funny I didn't think of it before: Multiple sclerosis. Great. Just perfect. Back to bed.
Posted by Adam on August 7, 2001, at 18:02:55
In reply to I may need help...., posted by Adam on July 13, 2001, at 7:14:58
Well, it's been a long haul...
Early last month I developed some really strange and distressing physical symptoms, and those have persisted, though they have come and gone in a rather mystifying manner.
I still have no idea what the problem is. One thing I can say is, after getting to know my new primary care doc, we're getting along well, and he does take my complaints seriously. I must admit, when I first saw him, I was terribly worried, and preemptively defensive, given some very disappointing experiences I had had with other doctors prior to seeing him.
Anyway, I've been tested for the two candidates we both agreed should at least be ruled out: Lyme disease and MS. I've had two ELISAs done, both negative. Now, the accuracy of the Lyme ELISA is overblown, but the chance, at this point, that I fit into the catagory of those who are infected but show up negative on serological tests is admittedly low. So that's a dead end for the time being. An MRI of my brain looks normal, so no obvious signs of brain abnormalities of any kind.
I have been able to discern only a slight pattern in all of this: Sleep seems to help, and after a period of intense physical activity, I'm in very bad shape. Towards the end of July, I went on another hiking trip, after nearly a week of feeling well, and no indication from my doctor that anything was obviously wrong. I think, at that point, I was willing to believe I maybe only had "a bug" and that it had left me.
Well, just as after the first hiking trip at the beginning of the month, my symptoms worsened steadily and dramatically during the week that followed.
Like I said, sleep seems to help. In fact, it is the only thing that helps. Unfortunately, sleep is something I can get little of, and my ability to get any seems to be worse of late than it has been in the past. Ever since I started selegiline, my sleep cycle has been a mess. My body doesn't know what time it is anymore. I don't dream, normally. I think I have to acknowledge that what I have been dealing with for about two years now is a drug-induced sleep disorder, and the effects of that may be catching up with me.
It seems nowadays, lack of sleep, coupled with a couple days of strenuous exercise, results in a truly bizarre cluster of symptoms, including hot flashes, palpitations, shortness of breath, weakness, achyness in joints, dizzyness, blurred vision, and an odd sort of "numbness" (really more of a heavyness or sensation like pressure) around the area of the nasal bridge, orbits, and down the left side of my face.
Oh, and another thing: I'm now having episodes of hypertension and random tachycardia. On my last two doctor's visits, both about five days apart, my b.p. was 150/90 and 140/78, my pulse between 90 and 100. I'm normally around 110-120/70, with a resting pulse around 60, and have been that way for years. Consumption of some of the "forbidden foods", in the past, rarely caused my b.p. or anything else to move an inch. On both days, I had, for lunch, food with some American cheese in it (sandwiches), but the idea that the cheese could be the culprit would suprise me greatly, since it's never been a problem before. Spontaneous hypertension?
My doctor says my body is now behaving like my catecholamines are all out of whack. The conclusion we are both reluctantly arriving at is something about the way my body interacts with selegiline may have changed, and exhaustion may exacerbate things. One possiblility is a benign kind of endocrine tumor (the name of which escapes me). Cells from such tumors can secrete high amounts of catecholamine neurotransmitters, like adrenaline. Dysregulation of these catecholamines might explain some of my mysterious symptoms, the increased sleep disturbance, the hightened or paradoxical pressor response, increased pulse, etc.
Another weird thing: I've been taking diphenhydramine for sleep,. because popping 25mg of Benadryl before I go to bed is about the only way I can get a full-night's sleep now. Despite the spacey feeling the antihistamine gives me the next day, in general, I feel better for it. Suprisingly good, in fact. When I lay off, I feel worse physically, though more alert.
The doc says the only way I can be tested for the presence of the aforementioned tumor (or, for that matter, any real problem with selegiline) is to taper off of it completely and wait a good month to conduct the other tests. On selegiline, the levels of catecholamines in my system are too abnormal to get meaningful results. So it looks like I will soon be stopping selegiline, at least for a while, to xamine this problem more thoroughly. I am in a lengthy process of omission, at this point, with no certainty about the outcome.
To make matters a bit worse, my pdoc, while willing to wait for the physiological testing to continue, is rather convinced that my symptoms are psychological in origin, due to the proximity in time of onset and an emotionally confusing encounter with another woman. I simply cannot, myself, take this hypothesis seriously until I have exhausted all other options. I can only say I know myself, my body and my mind. My physical symptoms are real, and as for that weekend, well, I make way too big a deal of things sometimes. That's clear enough from my prior posts in this thread. No reason to assume I'm harboring some deep-seated psychic conflict. I just need to chill out. Things with my g.f. are great, especially after some frank discussion of the salient issues of the past couple months, my job is fine, my relationship with my parents good, etc.
If I'm troubled, I think its because I just don't feel right at all, much of the time, and I'm afraid this mysterious problem has put the only antidepressant treatment that has ever worked for me in doubt, vis-a-vis my physical health. I will just have to wait and see how things play out.
Posted by shelliR on August 7, 2001, at 19:50:51
In reply to Re: I may need help...., posted by Adam on August 7, 2001, at 18:02:55
Hi Adam
I'm sorry you are still going through this, and sorry that I have exactly zero expertise in the medical arena. Still, I am glad that your primary physician is taking this seriously and very annoyed that your pdoc is not. The rule of thumb is that every medical posibility should be absolutely explored, before making any judgment on whether it possibly could be a manifestation of psychological symptoms.
Have you tried to get in touch with any of the researchers who gave you the selegiline patch to see if anything like this has ever turned up? Are you in the Boston area? I spoke several times to Dr. Alexander Botkin re selegiline, and he didn't indicate any side effects at all, but he might be a good person to call at McLean Hospital.
> The doc says the only way I can be tested for the presence of the aforementioned tumor (or, for that matter, any real problem with selegiline) is to taper off of it completely and wait a good month to conduct the other tests. On selegiline, the levels of catecholamines in my system are too abnormal to get meaningful results. So it looks like I will soon be stopping selegiline, at least for a while, to xamine this problem more thoroughly. I am in a lengthy process of omission, at this point, with no certainty about the outcome.
>Are you absolutely sure that your doctor is right about this: that you must go off the selegiline to be tested for a tumor. I might get a second opinion about this if you have any question about it. (I'm not at all saying that he's not correct; I would just want to confirm that he is correct because it is such a hard thing to have to deal with).
Anyway, hopefully some of our "medical experts" might come up with an idea. In the meantime, please keep us updated.
Shelli
Posted by medlib on August 7, 2001, at 23:16:45
In reply to Re: I may need help...., posted by Adam on August 7, 2001, at 18:02:55
Hi Adam--
I'm very sorry to read of your physical problems--hardly seems fair to get one big problem solved, only to be sandbagged with another, which threatens to unravel the solution to the first! Sorta seems like you're being toyed with.
I believe that the name of the tumor you referred to is pheochromocytoma--easy to see why that didn't make it to long-term memory. The episodic nature of the cardiac symptoms you memtioned is characteristic of this type of tumor. If you're interested in reading more about this, a good place to start might be Medlineplus at:
http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
If these Sxs were solely due to selegilene, you'd think that your BP spikes (which, though measurable, still fall in the borderline area of hypertension) and runs of tachycardia would parallel the drug's serum concentration peaks.
I wouldn't take seriously your doc's inclination toward psychogenic explanations. I believe that this is a common reaction of any non-pdoc to any unclear symptomology in a patient with a positive psych history. For example, many years ago I had a stroke paralyzing the left half of my body. The neurologist assigned to me (I didn't have a PCP then) announced to the students he was conducting on rounds that my paralysis was most probably psychosomatic, because I didn't have a severe headache or an abnormal EEG. I told him (and his minions) that I thought that this was, unfortunately, even less likely than the notion that he had either compassion or competence, and that he was fired. As you seem to have discovered from your prior medical encounters, sometimes, there are just no payoffs for putting up with fools.
Hoping that fate gives you a break---medlib
Posted by Lorraine on August 8, 2001, at 12:47:30
In reply to I may need help...., posted by Adam on July 13, 2001, at 7:14:58
A couple of comments:
First, when doctors accuse the patient of being a hypochondriac, it just means that the doctors don't know what the problem is, and, being doctors, the fault must lie elsewhere--with the patient. So it is your fault that they don't know what is wrong with you. Sweet, huh?
Second, with the type of illness you are describing--Lyme disease, CFS, FMS etc you need a particular type of doctor. One who isn't a skeptic. You need a doctor who specializes in these types of conditions. If you can find a CFS or FMS doctor in your area, they will be able to do the type of testing necessary to determine what is going on. You might want to visit the site beatcfsandfms.com or it might be beatfmsandcfs.com or maybe .org. anyway it is a great site and will help put you on track.
I've been on Selegiline and doubt your symptoms have to do with this, but I'm not a doctor.
Posted by Adam on August 8, 2001, at 18:35:27
In reply to Re: I may need help.... » Adam, posted by medlib on August 7, 2001, at 23:16:45
Hi, midlib,
Yes, pheochromocytoma is the type of tumor my doctor was referring to. I have been reading of certain pseudopheochromocytomas, which, not suprisingly, are usually caused by some or other drug or interaction of drugs...
So here's a little theory: My sleep drug of choice, diphenhydramine, inhibits cytochrome P4502D6. I've been convinced for quite a while that I may be deficient in that enzyme as it is, since I have such low tolerance for certain drugs. Maybe it's worth noting that a relatively small dose of diphenhydramine knocks me right on my butt as it is (25mg and I'm near-comatose...nice until the next morning when I can't see straight).
Anyway, CYP2D6 is supposedly not important in the metabolism of selegiline, desmethylselegiline, or l-amphetamine, the latter couple being two of the three major metabilites of selegiline. However, in Clin Pharmacol Ther 1998 Oct.; 64(4):402-411, they mention that those with the 2D6 polymorphism (deficient in 2D6) had around half-again as much l-methampetamine floating around as normals (this result was quite statistically significant, though the n was small).
l-methamphetamine doesn't do much to dopamine, but its ability to increase NE efflux is only 2-3x less than that of d-methamphetamine. If I'm taking a drug that inhibits 2D6 (with or without the deficiency), plus I'm using a non-selective MAOI (30mg selegiline/day), I could be boosting my levels of NE, via the putative increased half-life of l-meth., to give me a bit of hypertension chasing the peak in plasma levels of l-meth. Selegiline is very extensively and rapidly metabolized in the gut by CYP3A4, and the primary metabolite is l-meth. This happens in just a couple hours or so. So, if I take my first dose around 8 AM, the second around 2 PM, and I'm hypertensive in the early afternoon all the way until around midnight (which, it turns out, I was)...well, maybe that's the cause.
Hmmm. Pseudopheochromocytoma caused by a drug interaction of diphenhydramine and selegiline (l-methampetamine)?
As it is, I have some pretty bad anticholinergic symptoms when I take diphenhydramine (dry mouth esp.), so my doctor and I, for reasons unrelated to the above, thought low-dose neurontin might be a preferable sleep-aid, since that also may have a bit of an anxiolytic effect, which gawd knows I could use these days. I just got the new script today. Maybe I should look at the metabolism of neurontin before I fill it...
Just as an aside, it was actually my pdoc (and another pdoc at McLean) who floored me with their near-immediate assumptions that my problems were psychosomatic. My pdoc actually probed rather deeply into my "encounter" with this other woman, who I confess I'm not thinking all that much about at the moment, one way or another, given my present concerns. She (my pdoc) was, and I'm not exaggerating, convinced in about five minutes, after I acknowledged I had developed a somewhat distressing crush on another woman (understandable, being rather involved with somebody as I am), that my symptoms were entirely psychosomatic. Throw in the parental abuse/abandonment issues...elementary, my dear. I predicted as much in my satire of an analyst above. I swear I am not making any of this up...in fact my great anxiety in the beginning was largely fueled by the anticipation of this hypothesis. It's just...so frustrating.
Major disappointment, to say the least. Anyway, I dealt with it finally the way I often do with disputes: "With all due respect, I think you're wrong." Yes, I'm a pain in the ass, and I have the audacity to argue with medical specialists, which makes me an arrogant pain in the ass to boot. BUT, I have the "benfit" of having been me for some 31 years now, and psychosomatic illnesses, BDD or no BDD, ain't my bag. There's just no good reason to jump on that diagnosis, as far as I can see, and I refuse to until I've ruled out all else.
> Hi Adam--
>
> I'm very sorry to read of your physical problems--hardly seems fair to get one big problem solved, only to be sandbagged with another, which threatens to unravel the solution to the first! Sorta seems like you're being toyed with.
>
> I believe that the name of the tumor you referred to is pheochromocytoma--easy to see why that didn't make it to long-term memory. The episodic nature of the cardiac symptoms you memtioned is characteristic of this type of tumor. If you're interested in reading more about this, a good place to start might be Medlineplus at:
>
> http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
>
> If these Sxs were solely due to selegilene, you'd think that your BP spikes (which, though measurable, still fall in the borderline area of hypertension) and runs of tachycardia would parallel the drug's serum concentration peaks.
>
> I wouldn't take seriously your doc's inclination toward psychogenic explanations. I believe that this is a common reaction of any non-pdoc to any unclear symptomology in a patient with a positive psych history. For example, many years ago I had a stroke paralyzing the left half of my body. The neurologist assigned to me (I didn't have a PCP then) announced to the students he was conducting on rounds that my paralysis was most probably psychosomatic, because I didn't have a severe headache or an abnormal EEG. I told him (and his minions) that I thought that this was, unfortunately, even less likely than the notion that he had either compassion or competence, and that he was fired. As you seem to have discovered from your prior medical encounters, sometimes, there are just no payoffs for putting up with fools.
>
> Hoping that fate gives you a break---medlib
Posted by Adam on August 8, 2001, at 19:11:56
In reply to Re: I may need help...., posted by Lorraine on August 8, 2001, at 12:47:30
Hey, Lorraine,
OK, let me come clean with this: I sometimes just get like I got in the posts far above in this thread. I just do. I don't know why, and have given up trying to figure it out. Something weird and distressing gets thrown my way, and Adam's little brain goes into hyper-overdrive. Now, that's not to say that I didn't experience every symptom that I described above. It's also not to say that I'm a complete lunatic for worrying about the possible diagnoses that I worried about; my rather infuriating cluster of non-specific symptoms falls quite neatly into the profile of numerous ailments. It's just that I never had anything even remotely like this before.
So I got scared, and started thinking in rather catastrophic terms. Not delusional terms, mind you, but certainly not optimistic or measured ones. As it is, I've been given the standard battery of tests, and they've all been negative. I must concede that while my symptoms could be associated with, say, FMS, MS, or Lyme, nothing screamed out a particular disease before, and the tests may have adequately ruled out my initial concerns.
Something is wrong, there's no question in my mind. But, I've managed to get almost used to it at this point, so my anxiety level is ratcheting itself down a bit; but kudos to my new primary care doc; I got all the tests I asked for since then.
Much to my suprise, it's my primary care doc who is my big hero so far. I rather thought, as I scrambled to find a new PCP when this all began, that it would be the internal med. folks who would be brushing me off, and the psych folks would be pushing for me. I was right to anticipate the psychosommatic angle, just wrong about who would be advocating for it.
So lets give a big hand to my new PCP: After he got to know me, he believed in my conviction that there was something physically wrong. He took my concerns about some illnesses seriously. He was frank in his assessment that the symptoms I had could be any number of possible ailments, but agreed with me that my concerns were reasonable to a certain degree, and felt we should order certain tests, if for no other reason but to exclude spurious candidates. He has shown remarkable patience, persistance, and clearly has enough of a sense of bedside manner to deal shrewdly with a pugilistic worry-wort such as myself. Plus, he, without simply caving in, recognized I am someone with a modicum of intelligence, and, despite his own doubts, also took seriously my own hypotheses, for the very fact that I knew my symptoms and might just be right. This is all I could ever hope to ask for.
Now, what to do about the pdoc...she's not so bad most of the time, and I guess I should at least be willing, if my search proves fruitless, to go it her way. I just fundamentally disagree with her sense of timing and rather narrow focus on the psychological. So, again, what to do...I guess I should determine if she is wrong or right before I make that decision.
> A couple of comments:
>
> First, when doctors accuse the patient of being a hypochondriac, it just means that the doctors don't know what the problem is, and, being doctors, the fault must lie elsewhere--with the patient. So it is your fault that they don't know what is wrong with you. Sweet, huh?
>
> Second, with the type of illness you are describing--Lyme disease, CFS, FMS etc you need a particular type of doctor. One who isn't a skeptic. You need a doctor who specializes in these types of conditions. If you can find a CFS or FMS doctor in your area, they will be able to do the type of testing necessary to determine what is going on. You might want to visit the site beatcfsandfms.com or it might be beatfmsandcfs.com or maybe .org. anyway it is a great site and will help put you on track.
>
> I've been on Selegiline and doubt your symptoms have to do with this, but I'm not a doctor.
Posted by Adam on August 8, 2001, at 19:30:05
In reply to Re: I may need help.... » Adam, posted by medlib on August 7, 2001, at 23:16:45
So here's my answer...
Nurontin (gabapentin) is not extensively metabilized by the liver, nor does it induce liver enzymes, and it is primarily eliminated, unchaged, via the renal system.
Cool. One problem solved, maybe...we'll see how things go.
Posted by Willow on August 8, 2001, at 19:52:19
In reply to Re: I may need help.... » medlib, posted by Adam on August 8, 2001, at 19:30:05
> So here's my answer...
>
> Nurontin (gabapentin) is not extensively metabilized by the liver, nor does it induce liver enzymes, and it is primarily eliminated, unchaged, via the renal system.
>
> Cool. One problem solved, maybe...we'll see how things go.
Posted by Adam on August 8, 2001, at 20:41:12
In reply to Adam check thread in social. (np), posted by Willow on August 8, 2001, at 19:52:19
Um, hi, Willow,
I'm sorry, but I'm not sure if I know which thread you are referring to...could you be more specific? Thanks!
> > So here's my answer...
> >
> > Nurontin (gabapentin) is not extensively metabilized by the liver, nor does it induce liver enzymes, and it is primarily eliminated, unchaged, via the renal system.
> >
> > Cool. One problem solved, maybe...we'll see how things go.
Posted by michael on August 8, 2001, at 20:56:09
In reply to Re: I may need help.... » medlib, posted by Adam on August 8, 2001, at 18:35:27
Adam -
Sadly, not much to contribute on this one.... (with the possible exception of the thought of finding diphenhydramine tablets, or even capsules, that you could split into less than 25mg doses - I unfortunately need at least 50mg to hope for some help with sleep...)
I don't have as much time to spend "here" these days, but when I check in, I make a point of checking out your posts - because I appreciate so much what you've had to contribute in the past.
Just off the top of my head - which ain't much - maybe trying something besides diphendydramine for regulating your sleep cycles... if not low doses of clonazepam or lorazepam, perhaps exploring melatonin?
Don't know if that's a good idea or not...
In any case, hang in there - fwiw, you've been a source of hope, for me at least, with your accounts of your experiences with selegiline, both the patch & orally.
With any luck, you'll get through this some way (sorry I don't have more to offer on this one), and be able to try the patch again - with which you had such good results - in the next 9 to 12 months.
Fwiw, I'm going to keep trying whatever my pdoc will allow me to (seems quite (too) conservative), and hope I find something that works... but in the back of my mind, I have to admit that I'm looking forward to trying the patch, once it's "FDA Approved." It just sounds like you had such positive results, and "symptoms" similar to mine, that I'm hopefull...
Anyway, sorry for rambling so long... count yourself luck that at least you have one doc that takes you seriously, and evaluates your ideas objectively. In my admittedly limited experience, I find that to be a luxury. If you don't blindly try SSRI after SSRI, you may just be perceived as "difficult."
Fwiw, if your pdoc becomes confrontational/difficult, at least you have your PCP to fall back on, and you can work from there...?Once again, sorry for the ramble - good luck, & I too am keeping my fingers crossed for the patch...
michael
> Hi, midlib,
>
> Yes, pheochromocytoma is the type of tumor my doctor was referring to. I have been reading of certain pseudopheochromocytomas, which, not suprisingly, are usually caused by some or other drug or interaction of drugs...
>
> So here's a little theory: My sleep drug of choice, diphenhydramine, inhibits cytochrome P4502D6. I've been convinced for quite a while that I may be deficient in that enzyme as it is, since I have such low tolerance for certain drugs. Maybe it's worth noting that a relatively small dose of diphenhydramine knocks me right on my butt as it is (25mg and I'm near-comatose...nice until the next morning when I can't see straight).
>
> Anyway, CYP2D6 is supposedly not important in the metabolism of selegiline, desmethylselegiline, or l-amphetamine, the latter couple being two of the three major metabilites of selegiline. However, in Clin Pharmacol Ther 1998 Oct.; 64(4):402-411, they mention that those with the 2D6 polymorphism (deficient in 2D6) had around half-again as much l-methampetamine floating around as normals (this result was quite statistically significant, though the n was small).
>
> l-methamphetamine doesn't do much to dopamine, but its ability to increase NE efflux is only 2-3x less than that of d-methamphetamine. If I'm taking a drug that inhibits 2D6 (with or without the deficiency), plus I'm using a non-selective MAOI (30mg selegiline/day), I could be boosting my levels of NE, via the putative increased half-life of l-meth., to give me a bit of hypertension chasing the peak in plasma levels of l-meth. Selegiline is very extensively and rapidly metabolized in the gut by CYP3A4, and the primary metabolite is l-meth. This happens in just a couple hours or so. So, if I take my first dose around 8 AM, the second around 2 PM, and I'm hypertensive in the early afternoon all the way until around midnight (which, it turns out, I was)...well, maybe that's the cause.
>
> Hmmm. Pseudopheochromocytoma caused by a drug interaction of diphenhydramine and selegiline (l-methampetamine)?
>
> As it is, I have some pretty bad anticholinergic symptoms when I take diphenhydramine (dry mouth esp.), so my doctor and I, for reasons unrelated to the above, thought low-dose neurontin might be a preferable sleep-aid, since that also may have a bit of an anxiolytic effect, which gawd knows I could use these days. I just got the new script today. Maybe I should look at the metabolism of neurontin before I fill it...
>
> Just as an aside, it was actually my pdoc (and another pdoc at McLean) who floored me with their near-immediate assumptions that my problems were psychosomatic. My pdoc actually probed rather deeply into my "encounter" with this other woman, who I confess I'm not thinking all that much about at the moment, one way or another, given my present concerns. She (my pdoc) was, and I'm not exaggerating, convinced in about five minutes, after I acknowledged I had developed a somewhat distressing crush on another woman (understandable, being rather involved with somebody as I am), that my symptoms were entirely psychosomatic. Throw in the parental abuse/abandonment issues...elementary, my dear. I predicted as much in my satire of an analyst above. I swear I am not making any of this up...in fact my great anxiety in the beginning was largely fueled by the anticipation of this hypothesis. It's just...so frustrating.
>
> Major disappointment, to say the least. Anyway, I dealt with it finally the way I often do with disputes: "With all due respect, I think you're wrong." Yes, I'm a pain in the ass, and I have the audacity to argue with medical specialists, which makes me an arrogant pain in the ass to boot. BUT, I have the "benfit" of having been me for some 31 years now, and psychosomatic illnesses, BDD or no BDD, ain't my bag. There's just no good reason to jump on that diagnosis, as far as I can see, and I refuse to until I've ruled out all else.
>
> > Hi Adam--
> >
> > I'm very sorry to read of your physical problems--hardly seems fair to get one big problem solved, only to be sandbagged with another, which threatens to unravel the solution to the first! Sorta seems like you're being toyed with.
> >
> > I believe that the name of the tumor you referred to is pheochromocytoma--easy to see why that didn't make it to long-term memory. The episodic nature of the cardiac symptoms you memtioned is characteristic of this type of tumor. If you're interested in reading more about this, a good place to start might be Medlineplus at:
> >
> > http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
> >
> > If these Sxs were solely due to selegilene, you'd think that your BP spikes (which, though measurable, still fall in the borderline area of hypertension) and runs of tachycardia would parallel the drug's serum concentration peaks.
> >
> > I wouldn't take seriously your doc's inclination toward psychogenic explanations. I believe that this is a common reaction of any non-pdoc to any unclear symptomology in a patient with a positive psych history. For example, many years ago I had a stroke paralyzing the left half of my body. The neurologist assigned to me (I didn't have a PCP then) announced to the students he was conducting on rounds that my paralysis was most probably psychosomatic, because I didn't have a severe headache or an abnormal EEG. I told him (and his minions) that I thought that this was, unfortunately, even less likely than the notion that he had either compassion or competence, and that he was fired. As you seem to have discovered from your prior medical encounters, sometimes, there are just no payoffs for putting up with fools.
> >
> > Hoping that fate gives you a break---medlib
Posted by Willow on August 8, 2001, at 22:07:42
In reply to Re: Adam check thread in social. (np) » Willow, posted by Adam on August 8, 2001, at 20:41:12
I brought an old thread up with poems in it. If you are not the same Adam disregard. If you are meanwhile I was looking through the internet I found a site, actually there are lots of them, where you can enter a music writing contest.
BEST WISHES
Willowps the thread is near the top of the page
Posted by Adam on August 9, 2001, at 11:24:16
In reply to Re: I may need help...., posted by michael on August 8, 2001, at 20:56:09
Hi, Michael,
Thanks for your kind words. For sleep, I'm going to try neurontin, but first I want to do a little experiment...I'm going to let myself clear of diphenhydramine and wait to see if my b.p. keeps doing the weird things it has been doing. If so, then the pheochromocytoma theory maybe looks more credible than my metabolism theory (both could be completely wrong). I have a feeling that neurontin could lower b.p. (GABAnergic drugs may do that), so I don't want to add another complicating variable until I've checked everything out.
As for the patch, I sure hope it gets approved sooner than later. I've kind of given up on waiting for it, though. As time passed, and I gain more experience with such issues (to some extent through my job), the behavior of the FDA becomes more and more mysterious and questionable. I no longer feel I can predict what they will decide, or how long it should take for them to reach a decision.
> Adam -
>
> Sadly, not much to contribute on this one.... (with the possible exception of the thought of finding diphenhydramine tablets, or even capsules, that you could split into less than 25mg doses - I unfortunately need at least 50mg to hope for some help with sleep...)
>
> I don't have as much time to spend "here" these days, but when I check in, I make a point of checking out your posts - because I appreciate so much what you've had to contribute in the past.
>
> Just off the top of my head - which ain't much - maybe trying something besides diphendydramine for regulating your sleep cycles... if not low doses of clonazepam or lorazepam, perhaps exploring melatonin?
>
> Don't know if that's a good idea or not...
>
> In any case, hang in there - fwiw, you've been a source of hope, for me at least, with your accounts of your experiences with selegiline, both the patch & orally.
>
> With any luck, you'll get through this some way (sorry I don't have more to offer on this one), and be able to try the patch again - with which you had such good results - in the next 9 to 12 months.
>
> Fwiw, I'm going to keep trying whatever my pdoc will allow me to (seems quite (too) conservative), and hope I find something that works... but in the back of my mind, I have to admit that I'm looking forward to trying the patch, once it's "FDA Approved." It just sounds like you had such positive results, and "symptoms" similar to mine, that I'm hopefull...
>
> Anyway, sorry for rambling so long... count yourself luck that at least you have one doc that takes you seriously, and evaluates your ideas objectively. In my admittedly limited experience, I find that to be a luxury. If you don't blindly try SSRI after SSRI, you may just be perceived as "difficult."
>
> Fwiw, if your pdoc becomes confrontational/difficult, at least you have your PCP to fall back on, and you can work from there...?
>
> Once again, sorry for the ramble - good luck, & I too am keeping my fingers crossed for the patch...
>
> michael
>
>
>
>
>
>
>
>
>
>
> > Hi, midlib,
> >
> > Yes, pheochromocytoma is the type of tumor my doctor was referring to. I have been reading of certain pseudopheochromocytomas, which, not suprisingly, are usually caused by some or other drug or interaction of drugs...
> >
> > So here's a little theory: My sleep drug of choice, diphenhydramine, inhibits cytochrome P4502D6. I've been convinced for quite a while that I may be deficient in that enzyme as it is, since I have such low tolerance for certain drugs. Maybe it's worth noting that a relatively small dose of diphenhydramine knocks me right on my butt as it is (25mg and I'm near-comatose...nice until the next morning when I can't see straight).
> >
> > Anyway, CYP2D6 is supposedly not important in the metabolism of selegiline, desmethylselegiline, or l-amphetamine, the latter couple being two of the three major metabilites of selegiline. However, in Clin Pharmacol Ther 1998 Oct.; 64(4):402-411, they mention that those with the 2D6 polymorphism (deficient in 2D6) had around half-again as much l-methampetamine floating around as normals (this result was quite statistically significant, though the n was small).
> >
> > l-methamphetamine doesn't do much to dopamine, but its ability to increase NE efflux is only 2-3x less than that of d-methamphetamine. If I'm taking a drug that inhibits 2D6 (with or without the deficiency), plus I'm using a non-selective MAOI (30mg selegiline/day), I could be boosting my levels of NE, via the putative increased half-life of l-meth., to give me a bit of hypertension chasing the peak in plasma levels of l-meth. Selegiline is very extensively and rapidly metabolized in the gut by CYP3A4, and the primary metabolite is l-meth. This happens in just a couple hours or so. So, if I take my first dose around 8 AM, the second around 2 PM, and I'm hypertensive in the early afternoon all the way until around midnight (which, it turns out, I was)...well, maybe that's the cause.
> >
> > Hmmm. Pseudopheochromocytoma caused by a drug interaction of diphenhydramine and selegiline (l-methampetamine)?
> >
> > As it is, I have some pretty bad anticholinergic symptoms when I take diphenhydramine (dry mouth esp.), so my doctor and I, for reasons unrelated to the above, thought low-dose neurontin might be a preferable sleep-aid, since that also may have a bit of an anxiolytic effect, which gawd knows I could use these days. I just got the new script today. Maybe I should look at the metabolism of neurontin before I fill it...
> >
> > Just as an aside, it was actually my pdoc (and another pdoc at McLean) who floored me with their near-immediate assumptions that my problems were psychosomatic. My pdoc actually probed rather deeply into my "encounter" with this other woman, who I confess I'm not thinking all that much about at the moment, one way or another, given my present concerns. She (my pdoc) was, and I'm not exaggerating, convinced in about five minutes, after I acknowledged I had developed a somewhat distressing crush on another woman (understandable, being rather involved with somebody as I am), that my symptoms were entirely psychosomatic. Throw in the parental abuse/abandonment issues...elementary, my dear. I predicted as much in my satire of an analyst above. I swear I am not making any of this up...in fact my great anxiety in the beginning was largely fueled by the anticipation of this hypothesis. It's just...so frustrating.
> >
> > Major disappointment, to say the least. Anyway, I dealt with it finally the way I often do with disputes: "With all due respect, I think you're wrong." Yes, I'm a pain in the ass, and I have the audacity to argue with medical specialists, which makes me an arrogant pain in the ass to boot. BUT, I have the "benfit" of having been me for some 31 years now, and psychosomatic illnesses, BDD or no BDD, ain't my bag. There's just no good reason to jump on that diagnosis, as far as I can see, and I refuse to until I've ruled out all else.
> >
> > > Hi Adam--
> > >
> > > I'm very sorry to read of your physical problems--hardly seems fair to get one big problem solved, only to be sandbagged with another, which threatens to unravel the solution to the first! Sorta seems like you're being toyed with.
> > >
> > > I believe that the name of the tumor you referred to is pheochromocytoma--easy to see why that didn't make it to long-term memory. The episodic nature of the cardiac symptoms you memtioned is characteristic of this type of tumor. If you're interested in reading more about this, a good place to start might be Medlineplus at:
> > >
> > > http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
> > >
> > > If these Sxs were solely due to selegilene, you'd think that your BP spikes (which, though measurable, still fall in the borderline area of hypertension) and runs of tachycardia would parallel the drug's serum concentration peaks.
> > >
> > > I wouldn't take seriously your doc's inclination toward psychogenic explanations. I believe that this is a common reaction of any non-pdoc to any unclear symptomology in a patient with a positive psych history. For example, many years ago I had a stroke paralyzing the left half of my body. The neurologist assigned to me (I didn't have a PCP then) announced to the students he was conducting on rounds that my paralysis was most probably psychosomatic, because I didn't have a severe headache or an abnormal EEG. I told him (and his minions) that I thought that this was, unfortunately, even less likely than the notion that he had either compassion or competence, and that he was fired. As you seem to have discovered from your prior medical encounters, sometimes, there are just no payoffs for putting up with fools.
> > >
> > > Hoping that fate gives you a break---medlib
Posted by Adam on August 9, 2001, at 11:25:40
In reply to Re: Adam check thread in social, posted by Willow on August 8, 2001, at 22:07:42
Hey, Willow,
I think I'm the only "Adam" here. My songwriting skills are pretty bad, but I'll give the URL a look! Thanks!
> I brought an old thread up with poems in it. If you are not the same Adam disregard. If you are meanwhile I was looking through the internet I found a site, actually there are lots of them, where you can enter a music writing contest.
>
> BEST WISHES
> Willow
>
> ps the thread is near the top of the page
Posted by medlib on August 9, 2001, at 12:13:43
In reply to Re: I may need help.... » medlib, posted by Adam on August 8, 2001, at 18:35:27
Adam--
What an interesting, if somewhat convoluted, theory! The nice part about it is that it's easy to test empirically by d/cing the benadryl. If you are right, you'll have no more SNS symptoms, so no further action re selegiline may be necessary. Real pheos are quite rare and in every aspect a pain in the rear. BTW, it is not necessary to be polymorphic for CYP2D6 to have the reactions you do to benadryl; it produces the same effects in me. I took my first 25mg. dose for a rash; 10 min. later, while driving to school, I fell asleep at the wheel and missed plowing into a tree by millimeters. (I have no signs of CYP2D6 deficiency.) While on the subject, do you know of the codeine "test" for 2D6 deficiency? If it provides no pain relief, that person is deficient in 2D6; codeine is a prodrug metabolized by 2D6, and only its metabolites provide analgesia.
I'm no brainiac, but grapefruit juice with low dose selegiline seems worth trying, since it is known to inhibit metabolism of substances from caffeine to felodine to verapamil. If, with that mechanism, you can decrease your dosage of selegiline to 10mg/day, you can eventually restore its selectivity for MAO B. While ascertaining blood levels of various metabolites might be interesting, they may not have sufficient clinical utility to justify the costs--particularly if no further pheo testing is necessary.
Good luck and well wishes---medlib
Posted by Adam on August 9, 2001, at 20:27:27
In reply to Re: I may need help...., posted by medlib on August 9, 2001, at 12:13:43
Hey medlib,
You're plenty brainy enough for me. I've learned quite a bit of use from you already. I've never taken codeine, nor would it be a good idea for me to, these days! However, a long time ago I had some wisdom teeth out, and for the aftermath, the oral surgeon gave me some vicondin. I really did love vicodin. Anyway, since I had a rather stellar response to that close cousin of codeine, it now seems quite unlikely that I am 2D6 deficient. I guess I'm just hypersensitive to certian drugs and/or their metabolites.
I took my b.p. and pulse tonight: 140/85, 95 resting (!). Pretty weird. I'm normally 120/80 at most, and about 70 resting at most. We'll see what tomorrow brings.
There may be something empirical I can do with the grapefruit juice idea...can we take it to that thread?
> Adam--
>
> What an interesting, if somewhat convoluted, theory! The nice part about it is that it's easy to test empirically by d/cing the benadryl. If you are right, you'll have no more SNS symptoms, so no further action re selegiline may be necessary. Real pheos are quite rare and in every aspect a pain in the rear. BTW, it is not necessary to be polymorphic for CYP2D6 to have the reactions you do to benadryl; it produces the same effects in me. I took my first 25mg. dose for a rash; 10 min. later, while driving to school, I fell asleep at the wheel and missed plowing into a tree by millimeters. (I have no signs of CYP2D6 deficiency.) While on the subject, do you know of the codeine "test" for 2D6 deficiency? If it provides no pain relief, that person is deficient in 2D6; codeine is a prodrug metabolized by 2D6, and only its metabolites provide analgesia.
>
> I'm no brainiac, but grapefruit juice with low dose selegiline seems worth trying, since it is known to inhibit metabolism of substances from caffeine to felodine to verapamil. If, with that mechanism, you can decrease your dosage of selegiline to 10mg/day, you can eventually restore its selectivity for MAO B. While ascertaining blood levels of various metabolites might be interesting, they may not have sufficient clinical utility to justify the costs--particularly if no further pheo testing is necessary.
>
> Good luck and well wishes---medlib
Posted by Elizabeth on August 10, 2001, at 15:19:12
In reply to I may need help...., posted by Adam on July 13, 2001, at 7:14:58
Hi Adam. I'm sorry to hear of your troubles.
I'm sure that a lot of people hear empathise about the way you've been treated by the doctors you've gone to asking for help. I got a taste of this a few months ago when I had an episode of respiratory distress syndrome coupled with pneumonia (probably iatrogenic, IMO). I was comatose, and they jumped to the conclusion that I'd attempted suicide by taking a drug overdose. The paramedics gave me Ativan and naloxone, so it's hardly surprising that I tested positive for benzodiazepines. (Plus I'd taken benzos the night before anyway.) The doctors at the hospital refused to do a quantitative toxicology workup to see if their overdose hypothesis was correct. Even when my family showed them the full bottle of the drug I had supposedly ODed on, they wouldn't let go of the assumption that the origin of the problem was psychiatric. (I will give them a bit of credit: once I woke up and they were able to extract the breathing tube, they listened to my account of what had happened and did appropriate diagnostic tests -- although no cause was ever determined and the black mark of the "drug overdose" diagnosis remained on my records.)
As you've seen, the medical profession seems to have this belief that psychiatric patients don't get "real" illnesses -- that if we present with symptoms of "physical" sickness, it's most likely psychosomatic (women with mental illnesses are probably subjected to this even more than men are). I think that we're less likely to get adequate diagnostic workups than non-mental-patients; I'd be interested to see any research on this subject. Your expression "diagnostic abuse" sums it up nicely.
I think the best way to deal with this type of prejudice is not to act like a stereotypical "mental patient" -- don't show any signs of panic, terror, anger, hysteria, etc., go out of your way to be cool and rational, make it clear that you're educated and that you expect to be treated as an equal by the doctor, etc. (but also try not to give the impression that you're obsessed, which some doctors may conclude if you seem to have done "too much" research). It's tricky. I suspect that in order to be taken seriously, you might have to show *less* fear than a "normal" (mentally healthy) person would display in the same situation.
One thing that might help is to find a doctor who is interested in Lyme disease specifically, perhaps someone who's done research on it. (I think there's been some research at NEMC, at least, and probably other centres in the area as well.) I would think that such a doctor would be a lot more open to considering the possibility of Lyme disease and would be more familiar with how this disease presents than the average internist would. (Oh, and going to McLean *really* isn't the answer!) Also, showing up with a diagnosis already in mind can contribute to the impression that you're obsessive or hypochondriacal; it might be best to see a doctor who specialises in the type of thing you're experiencing -- see if you can get a referral from your GP, who you say you trust.
Another thing that can improve doctor-patient communications is straightforwardness: state explicitly that you aren't a hypochdonriac, let them know that you've considered the possibility, and explain as clearly as possible why you've rejected it. This, combined with being sure not to *act* at all like a hypochondriac, might just convince them. (I've used a similar approach when discussing buprenorphine with a new doctor: I tell them that I'm not a drug addict, that I have considered the possibility, and why I believe it's not the case. I am also very open to letting them peruse my medical records, although I do tell them that I've often found major errors in these records. All pdocs, of course, claim to take medical records with a grain of salt.)
Hmm, reading further down, I discover that your test was negative. A question occurs to me: you mentioned that the test is unreliable; do you know if there tend to be a lot of false positives, false negatives, or both?
> I am becoming more convinced, as I read up, that my symptoms are consistent with Lyme disease.
I don't know too much about Lyme disease. My father had it long ago, before anyone knew what it was, and I have family in CT so I know several other people who've had it. (It's also fairly common in Princeton, where I lived for a couple of years when I was very young -- there are a lot of deer there and much of the land is covered with forsts.) I think that getting tested was a good idea. The prognosis has improved a lot since my dad had it, but as I'm sure you know, it can become very serious if left untreated. (Not that it's not serious anyway -- well, you know what I mean. < g >)
BTW, just for reference (to anyone reading who likes to go camping or hiking in the Northeast US): taking a shower within 24 hours after you spend time outside can prevent you from getting bitten (I guess that deer ticks are slow biters). Also, if you're in the northeast US, it's a good idea to wear boots and/or tuck your pant legs into your socks when you go hiking, cacmping, etc.
> The doctor was completely unaware of selegiline, and seemed only vaguely familiar with MAOIs.
That's typical for an internist; neurologists are most likely to know about selegiline. (I found it referred to as "sertraline" in one place in my records from when I was taking it.)
> Since my preliminary vitals all appear normal, he possiblility of prescribing me antibiotics never came up.
I think that's reasonable, actually. Antibiotics shouldn't be used unless there's a fair certainty that they're necessary.
> I'm not sure what to do. If I can't find a doctor who will treat me, what are my options?
Taking it into your own hands, I guess. Not terribly reassuring -- sorry. I do think you should be able to find a doctor who will treat you like a human being; you're in a location that's swarming with doctors, and there's a lot of medical research being done there.
> I certainly don't agree that I'm a hypochondriac, but it would seem my medical history has biases every physician I have met with so far towards that dx, vs. the assumption that my symptoms are legitimate.
The very idea of "illegitimate" symptoms is mind-boggling. It's too bad you're having trouble getting in touch with your psychiatrist, since it would probably be helpful if she could confirm to these other doctors that you're not a hypochondriac.
Re sleep problems: I assume you've probably tried some medications for this. Which ones, and did they help at all?
Re hypertension: (1) Is it possible that you're getting "white-coat hypertension?" (2) How long before getting it checked had you taken your last dose of selegiline? (3) Have you had your BP monitored over a long period of time (i.e., not just once, but every 15 or 30 minutes for a few hours)? (4) How old are you?
The BPs that you mentioned were borderline-high -- not high enough that they pose a serious risk, but high enough that something fishy might be going on. (A pulse of 90-100 is reasonable for a person on a MAOI.) I doubt that it's food-related.
Re pheochromocytoma: this is rather far-fetched. It can cause hypertensive crises, particularly in people taking MAOIs (it's an absolute contraindication for MAOI therapy). Sometimes the paroxysmal hypertension associated with pheochromocytoma manifests as panic attacks. I think that a urinary catecholamine level test would be indicated, but you would need to be off selegiline for that to be meaningful. Pseudopheochromocytoma is one description that I've seen for hypertensive episodes due to other causes (including MAOI interactions).
Re l-amphetamine and l-methamphetamine: I think this might be the most reasonable explanation of the ones that have been mentioned so far. I'm not terribly up on the metabolism of selegiline, but l-amphetamines are nasty and I do believe that the CYP2D family is involved there. Stopping the Benadryl and seeing if Neurontin works seems like it would be worthwhile.
> I have had my faith in medicine shaken before, but never this severly. I have never felt this clearly discriminated against, and it has come as a real shock.
Sadly, it's no shock to me. Doctors can be just as bigoted as the rest of the population.
I really hope you succeed in getting an accurate diagnosis and treatment. I also hope that you don't have too hard a time tapering off the selegiline. Please keep posting to let us know you're all right.
best wishes,
-elizabeth
Posted by Elizabeth on August 10, 2001, at 15:19:37
In reply to Re: I may need help...., posted by medlib on August 9, 2001, at 12:13:43
> I'm no brainiac, but grapefruit juice with low dose selegiline seems worth trying, since it is known to inhibit metabolism of substances from caffeine to felodine to verapamil.
Grapefruit juice contains a CYP3A4 inhibitor. I don't think that it would make much of a difference with selegiline.
> If, with that mechanism, you can decrease your dosage of selegiline to 10mg/day, you can eventually restore its selectivity for MAO B.
Not if the serum concentrations remained the same (as would be the case in a poor metaboliser).
-elizabeth
Posted by Adam on August 12, 2001, at 18:29:47
In reply to Re: I may need help.... » Adam, posted by Elizabeth on August 10, 2001, at 15:19:12
Hi, Elizabeth. Thanks for writing.
> As you've seen, the medical profession seems to have this belief that psychiatric patients don't get "real" illnesses --
Yes. Part of my fear: My maternal grandmother, who, by all accounts had been keen on leaving this world for as long as anyone could remember, was misdiagnosed as hypochondriacal (which she had in fact been at times), later to be diagnosed with a rare form of melanoma, which had metastesized so much that it was already too late. She died six months later. She got her wish, but how she got it...unacceptable.
> I think the best way to deal with this type of prejudice is not to act like a stereotypical "mental patient"Yeah, I'm sure you're right. The problem is, the symptoms really were quite distressing, and after getting the blow-off from the ER doc, I did start to become very afraid. It was difficult not to appear "mental" at times, I'm guessing, and that didn't help at all. It is, probably not coincidentally, around the time that my symptoms were persistant enough that my level of anxiety had naturally dissipated through sheer familiarity, that the doctors seemed more responsive.
>...false positives, negatives, etc.
>
There are actually more false positives than negatives, e.g. sometimes a past infection with Rocky Mountain spotted fever can cause a false potitive. The usual course is to do the ELISA first, the Western blot second after getting a positive (the latter being more accurate because you can see clearly, by molecular weight, if the band that "lights up" is the right one). After two negatives, my doctor said "you don't have Lyme." Well, I didn't test positive for Lyme, and so having Lyme is unlikely. Let's be specific.All of this confidence in the accuracy of the tests rests on the assumption that bacteria do not evolve and change over time. Kind of like the confidence doctors had that we had eradicated TB. The very drugs used to treat Lyme accelerate divergence and speciation. This is well known among skeptics, and some Lyme clinics are starting to adopt multi-strain screening assays. There is an alarming amount of diversity out there, and even with a pool of serum antibodies (polyclonal), the most commonly used tests are several steps behind evolution. How large the threat is is anyone's guess. It could be big, it could be tiny. No one really knows because the research hasn't been done. End of story.
> Antibiotics shouldn't be used unless there's a fair certainty that they're necessary.
>
Yes, in retrospect, I agree.
>
> Taking it into your own hands, I guess. Not terribly reassuring -- sorry. I do think you should be able to find a doctor who will treat you like a human being; you're in a location that's swarming with doctors, and there's a lot of medical research being done there.
>
I guess I've gotten used to being my only advocate. I think my GP is on my side, though, having gotten to know me a little better. I hope, anyway. Time will tell. If all this just resolves on its own, and no one knows what happened, what will he think? How will it affect my future treatment? I wish I could say.>
> Re sleep problems: I assume you've probably tried some medications for this. Which ones, and did they help at all?
>
I haven't tried many sleep meds. Neurontin is probably the first thing I've tried for that specific problem. Mirtazapine did wonders for sleep, but didn't quite measure up as an antidepressant. Lorazepam...now that was great, though I sometimes woke up early. I ran out of that a long time ago, and never asked for more. We know how that goes. Diphenhydramine is what I've used occasionally to self-medicate. Obviously, persistant use might be problematic. So now there's neurontin. 100mg wasn't supposed to do much, but it knocked me on my ass. I woke up in a stupor. I could barely put together a complete sentance until the early afternoon. I hope I get used to it.> Re hypertension: (1) Is it possible that you're getting "white-coat hypertension?" (2) How long before getting it checked had you taken your last dose of selegiline? (3) Have you had your BP monitored over a long period of time (i.e., not just once, but every 15 or 30 minutes for a few hours)? (4) How old are you?
>
I actually suggested to the doctor anxiety was to blame the first time he read me at 150/90. The weekend passed, and I monitored. I would seem to fluctuate, getting worse as the day progressed, and being pretty normal the next morning. I'm 31, so this is high for my age group, and high for me. I guessed at the selegiline (l-meth and l-amphetamine) + diphenhydramine interaction because b.p. seemed to follow what I would expect my peak plasma levels of selegiline and/or it's metabolites might be. I regarded this conclusion as practically a post-dictum, having a fair amount of time to discern the pattern, and something that an expert pharmacologist would have anticipated. My doctors, however, were unimpressed. Hence, I am tapering, and getting tested for pheochromocytoma.
>
> Re pheochromocytoma: this is rather far-fetched. It can cause hypertensive crises, particularly in people taking MAOIs (it's an absolute contraindication for MAOI therapy). Sometimes the paroxysmal hypertension associated with pheochromocytoma manifests as panic attacks. I think that a urinary catecholamine level test would be indicated, but you would need to be off selegiline for that to be meaningful. Pseudopheochromocytoma is one description that I've seen for hypertensive episodes due to other causes (including MAOI interactions).
>
Yep. I'm getting off selegiline, and getting tested, per doctor's orders. Get this: I think it's unnecessary. Some hypochondriac I am. We'll see what happens.> Re l-amphetamine and l-methamphetamine: I think this might be the most reasonable explanation of the ones that have been mentioned so far. I'm not terribly up on the metabolism of selegiline, but l-amphetamines are nasty and I do believe that the CYP2D family is involved there. Stopping the Benadryl and seeing if Neurontin works seems like it would be worthwhile.
>
Well, thank you very much. The praise of the praiseworthy is quite heartening. As it turns out, having been off Benadryl cold-turkey for five days now, yesterday was my first normal b.p. day for the 24-hour stretch. The first night I was off the Benadryl, my b.p. got up to almost 160/95 and I thought my head was going to pop open. Plus, I couldn't sleep for a damn. But I didn't want complicate the "experiment" so, no neurontin. Things improved the next night, and the night after that. Oh, but I'm _sure_ I just dreampt it all up.
>
> Sadly, it's no shock to me. Doctors can be just as bigoted as the rest of the population.
>
> I really hope you succeed in getting an accurate diagnosis and treatment. I also hope that you don't have too hard a time tapering off the selegiline. Please keep posting to let us know you're all right.
>
> best wishes,
> -elizabethYou know, I do too. But at this point, I'd be happy just to feel better. I'm afraid. I'm trying to get to the bottom of it, but to do that, I'm risking a relapse of my depression. I'd be happy enough if it just went away. Today, and the past couple days, I felt pretty good. Maybe that will continue. Maybe it won't. That's been the troubling thing: It comes and goes, and I don't know why. Maybe I am just sleep-deprived, and, after a good two years of 5-hours-a-night-if-I'm-lucky, maybe I've hit a breaking point. Maybe I misdiagnosed myself in my anxiety, and mistook a kind of exhaustion for other things. Weird stuff can happen when you don't sleep enough, or so I'm told. Anyway, perhaps I can use the selegiline washout, neurontin, and a simultaneous attempt to develop a rigorous, low-impact exercise schedule, to normalize my sleep as much as possible. I hope that's all it is.
Posted by Zo on August 12, 2001, at 23:20:44
In reply to Re: I may need help...., posted by Adam on August 12, 2001, at 18:29:47
That Neurontin knocks you on yr ass is promising, and yes, the daytime dopiness -- which occured for me at every dose increase (900mg. was the most I could tolerate) -- goes away. Hard to get through, but when it leaves, it leaves.
Zo
This is the end of the thread.
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