![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 8 to 32 of 37. Go back in thread:
Posted by Adam on July 13, 2001, at 17:51:47
In reply to Re: I may need help.... » Adam, posted by shelliR on July 13, 2001, at 9:02:53
> Adam. If possible try to calm yourself until your blood tests are back.
That's good advice. I'm probably freaking out a bit.
>If they come back negative, ask your pdoc for a referral to a doctor. If she knows you well, she will know that it is not your tendency to be a hypochondriac, and she can relay this information to the doctor.
The sad truth is she doesn't know me well. No doctor does. I haven't been able to hold onto any physician for more than a year since I left college. I had a pretty nice PCP before, but she left my HMO, so that was that. I have since been scrambling just to find a doctor who could see me by the end of the month. Emergency rooms have been no help whatsoever. As it is, I've gotten the same story from everyone, even a psychiatrist I spoke to at McLean "Are you experiencing any undue stress lately? Problems at home? Have you had any thoughts of hurting yourself? Hearing any voices?" I mean, come on. I had to ask the guy, point blank "Are you wondering if this is psychosomatic?" His reply "Well, yeah." I have been forthright as can be about my medical history because I thought it would help RULE OUT some of this stuff. The result has been that they fixate on it. I have no reason to believe my current pdoc wouldn't do the same, and, besides, I can't seem to get in contact with her. Very frustrating.
>I think you need to find a doctor that you >respect and trust to help you through this.
Yeah, I'll say.
>
> I'm sure that your ability to advocate for yourself will in the long run get you whatever treatment you need. I would, however, stay aware from emergency rooms for this type of diagnosis. I think in general they're only helpful for broken bones, heart attacks. etc. Nothing subtle.
>My fear, at this point, is that, barring a positive blood test, they will just bounce me back to the psychiatrists to fix my head. Given my experience so far, that wouldn't suprise me one bit. I can't see a doctor they don't refer me to without paying out-of-pocket, unfortunately, and I'm already researching that angle, so at least I can spend my money wisely.
> Keep writing and let us know what is happening.
>
> ShelliThank you for your concern, I will.
Posted by Adam on July 13, 2001, at 17:52:36
In reply to Re: I may need help.... » Adam, posted by Emmah on July 13, 2001, at 9:19:47
Thank you for the reference. I will look into it!
> Hi Adam,
>
> I did some searching and came across this site with info on lyme support groups.
>
> http://support.lymenet.org/
>
> Maybe they can get you in touch with a doctor who is willing to listen to your story.
>
> Take care,
> Emmah
Posted by Adam on July 13, 2001, at 17:57:10
In reply to Re: I may need help.... » Adam, posted by Zo on July 13, 2001, at 17:02:58
I must admit, I'm a bit leary of alternative medicine. As hard a time as I've had with the allopaths, there is at least some oversight and a fair amount of reasearch bolster it. I would readily concede that the research isn't always the most reliable, but its something to fall back on. Alternative medicine...well, I'll wait for the studies. I simply can't trust anecdotal evidence. You are absolutely right, though: I am the expert on me. I don't much appreciate people assuming I have another mental disorder. I think that should come at the end of the diagnostic chain, not at the beginning, if someone is complaining of physical symptoms. A prior history of mental illness is not a reason, in my oppinion, to jump to conclusions.
> Could be Lyme's. . .could also be, I hate to say it, because it's a bitch, Chronic Fatigue Illness. . .But most of all, you need an "alternative" type of MD, perhaps one associated with a CFS-FM or other wholistic clinic, as *they* are the ones who will listen to odd symptoms. And it is too hard to purse dx with ordinary doctors, never mind those in a hospital setting - you will just become unnecessarily discouraged. Your symptoms are outside the box, so look for a practice that seems the same.
>
> As you probably know, the Lyme's dx is *still* a bit uncertain. There's lots on the web; I see it often as someone with CFS searching out info.
>
> The first thing to do, however, I guarantee you, as a 20-year CFS vet, is to PROMPTLY FORGET hypochondriasis. Take any such dx as a signal - an offensive one, to be sure - that you are in the wrong doctor's office - it's something they throw out when they're at a loss, and it's really stupid, it's criminal, for it *does* harm the patient - and besides, *you* are the expert on you.
>
> Let me know if I can help,
> Zo
Posted by Zo on July 13, 2001, at 18:00:06
In reply to Re: I may need help...., posted by Adam on July 13, 2001, at 17:57:10
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 Adam on July 13, 2001, at 18:17:28
In reply to I may need help...., posted by Adam on July 13, 2001, at 7:14:58
I will also add they don't listen.
I do appreciate the fact that some folks at McLean agreed to look me over at a late hour. I went to them because I figured, in the remote case that selegiline was an issue, people with psychiatric expertise would know best. I now know why my last pdoc objected to my use of selegiline: People don't know about it. I have told two psychiatrists I did not know prior to the meeting I was taking selegiline, and the answer was "why?" I have to explain what it is, why I take it at the dose I do, etc.
An ER doc I saw a couple nights before literally did not know MAOIs from his ear. Had no idea what they were about. I told him, after I got my BP checked "well, I guess I can rule out hypertensive crisis," figuring he'd understand. He immediately frowned, raised his voice and said "whoah, WHOAH, now hold on. Where did you get 'hypertensive crisis' from, anyway?" So I said, calmly, "a person who takes a non-specific monoamine oxidase inhibitor has to be careful about what foods and drugs they ingest because some of them can cause dangerous reactions, including hypertensive crisis." After saying this, he looked at me, walked out of the room, came back with a book, flipped through it for about ten minutes while I sat there, raised his eyebrows when he got to the right page, closed the book, and then continued the conversation like the "hypertensive crisis" comment had never been made. That's Leominster Mass, around 12AM, Sunday July 8th. They can sue me all they like: It happened.
The upshot of that was I was sent away with the diagnosis of "low grade sinus infection, with possible canaliculitis causing the dizzyness." Please. PLEASE, I could do better than that. And I never said I had sinus pain. I said I had a funny sensation in my face that felt almost like sinus pressure but had none of the other symptoms of a sinus or airway infection.
At McLean, after sitting around for hours waiting for people, being steered towards a stress-induced somatization, despite my objections, I was sent out the door with the rcommendation I call my shrink, go to another ER, and take a Benedryl, which I was kindly handed on my way out. Benedryl? "What's this for?" I asked. "For the nasal congestion," was the response. I never said I had nasal congestion. Not once. Incredible. I knew it was bad out there, but I guess I had no idea.
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
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