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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 5 of 5. This is the beginning of the thread.
Posted by Daniel Woodfield on June 6, 2004, at 6:04:45
Ok,
So i have been lurking on these boards for about two years without ever posting, because i didn't really ever have anything to offer.
Infact i dont really now, i just need to ask a few questions to clear my thoughts before going to the doctors (in the UK) in the coming week for one last stab at getting better.
I have the normal anhedonic depression, that most people on here who complain about having tried every med under the sun with little help, seem to have, and i guess im at the stage that most on here get to when its time to stop being dictated to and ask people who actually know what they are talking about.
I have to work with a general practitioner, owing to the fact that over here in the UK, the medical system is run by the NHS which want to get people in and out as soon as possible. Everyone is labelled as one thing or another and never treated as an individual.Depression = Paxil
Anxiety = Paxil
IBS = Paxil
CFS = Paxil
Take Paxil, get progressively worse = Effexor
Take Effexor, get progressively worse = Celexaetc etc, with absolutely no give whatsoever.
Cannot be diagnosed as having ADD above the age of 6 (slight angry lie there), unless you are prepared to pay £600 to see psychiatrist a couple of times, really laying on the symptoms. Even the ask of a private psychiatrist visit is frowned onm over here though, its as if we are questioning the GPs ability, which we are, because they should NOT be dealing with bad cases of mental issues.
OK, to get to the point.
I have this, (diagnosed by myself of course, because the doctor wants to lump me with depression and depression only because then i become an easy patient, scréw you sir!!)
- Low grade depression, brought on purely with the hopelessness of my situation because of the things outlined above
- SERIOUS Social Anxiety
- Anhedonia
- Dysthymia
- Fatigue
- Motivation issues
- Severe Brain Fog since getting off of the Paxil poison
There may be other things but the idea is there. It seems very similar to most on here who cant seem to find help.
On top of that by the way, as a side note, since i have gotten off of the Paxil i have had severe hypolgycemia issues, daily. With research i have done it seems hypolgycemia is common with SSRIs and the MAIN reason why people gain weight with them.
I gained 84 lbs in the 11 months i was on Paxil, so i guess we can say my hypoglycemia was pretty bad on it, even though i didn't know. It only dawned on me after i finally finished taking the paxil and suddenly had these horrific Hyoglycemia symptoms, why i had eaten pizza every night while on the Paxil, and not just a couple of slices.
Now, i know this is not the norm and some people only have little weight issues and maybe that isn't hypoglycemia at all. But the above scenario tells me even if all the other horrid sysmptoms didn't (sexual effects, zombie like, depression 1000* worse etc etc), that i dont need serotonin enhancing drugs.
Even so, the doctor talked me into trying effexor, while i pleaded dopamine drugs by the way, and once again, after a few days of tremor and irritation, i settled back into my depressive, zombie like paxil state again. NO THANK YOU.
So i have given the doctors a miss for six months. Lost the weight, and then some, and am feeling ready to give it another shot.Armed with information from here and from other sources i believe enhancing my dopamine system is what is needed and is what has always been needed. (I was definitely un diagnosed ADHD during my child years).
Added to this that a lot of literature thinks that problems with a persons dopamine system can be a great contributer to Hypoglycemia, i doubt there could be anything that could change my mind now. Sure i could probably mask the feelings of it on another SSRI, but i shouldn't have to live my life trying to mask symptoms created by Doctors failed attempts to make me well, purely because i want to go left when the money men insist on doctors going right. (NOT ANYMORE, NOT THIS GUINEA PIG).
Ok, so with all that babble (ah the irony) out of the way, i have a few questions,
JOHNL, seems to be some kind of pioneer on finding effective treatements for my symptoms (along with AndrewB),Problem is by using the search function on these boards both of their messages seem to have dried up in recent times and im hoping that is because they have found what they need, have spread the knowledge and moved on to better things.
If thats the case then excellent.
However if they were still to be around, or if anyone knows the answers to my questions it would be great if i could get some answers.
AMISULPRIDE: Ok, the seemingly first AP that JohnL, AndrewB started raving about. Seems worth giving a try except for a few reasons. I dont fancy having TD, especially not at 22. Maybe if i was in my 60s and thinking of suicide, but not now at 22, with my final year of uni and hpefully a career/family to look forward to. It also seems that someone with my issues, especially with my undoubting dopamine defficiency, that i may be primed for TD. Scarey. Also, if this was the miracle that JohnL claimed it to be, why then 2 years later (the last post i can find of his, Jan 2003), is he no longer taking Amisulpride, but Zyprexa instead??
RITALIN: Im not gonna get the diagnosis needed for Ritalin without spending £600 as told above, but would this not work for my symptoms if dopamine is my issue. It seems to me that Ritalin is to Dopamine what SSRIs are to Serotonin. With me thinking that the PAXIL etc have just made my problems 50 billion times worse, would Ritalin not have the capacity to correct them, so at lest i can get on an even keel. Anyone???
ADRAFANIL: Has to be tried. See nothing negative, i just can't see it being the miracle that some claim (JohnL again as one), because i could not be more convinced that Dopamine is my issue, and Adrafinil is for NE, im sure. Like i said though, has to be tried.
benefits of Zyprexa over Amisulpride then, maybe JohnL if he IS still around could help with this. It really does confuse me as to why he changed Meds, would love to know the answer.
If needed i would not be adversed to adding a tiny bit of Prozac to the mix, i have to admit i enjoyed the activating properties of Effexor while they lasted those whole two days. weird that Effexor started totally opposite to how the Paxil did, but then settled down to the exact same nothingness. Prozac is my last hope with this family of useless (for me anyway) drugs.Anyway this is just the rubbish floating round in my head. there is much more of it, i have been researching this stuff for three years now, but this is all i have right now.
If anyonce can make ANY sense of it at all, please feel free to comment, i would be much obliged.
One final though just to solidify some of what i have said.
I ordered some SELEGILINE off the internet and it arrived the other day. I took 5mgs and about two hours later, my head was clearer, my mood brighter and my muscles more relaxed than for a long while. No puppy dog upper though, which i was glad of because i dont want to feel euphoric, i want normalacy. NO ANXIETY either which hass been an issue for me. There was some anxiety worrying about how the drug would feel, but when it kicked in my anxiety was evaporated. (not social, you understand, just the general anxiety.)
However i do not intend to take such a medication without my doctors help, it was more an experiment to see if impacting Dopamine could help me.
Infact my experience was so mellow, in that it seemed to adress issues but in a very very small way, that im more convinced than ever, that i was just born with a low capacity for even producing Dopamine and that SSRIs worsened that. The fact that i shook uncontrollably on effexor as if i had parkinsons adds weight to this i feel.
Anyway i have rambled much further than i thought i would. there is just TOO much information in my head that needs answers, too much experience that is never talked about because no one i know would want to hear it.Im sorry if im confusing but i have tried my best.
Posted by Racer on June 6, 2004, at 14:30:03
In reply to JohnL, Still around?? Regarding Meds, All welcome, posted by Daniel Woodfield on June 6, 2004, at 6:04:45
When you talk about 'hypoglycemia', are you basing that on symptoms, or on glucometer readings?
The symptoms of hypoglycemia are notoriously unreliable, and can be caused by many things totally unrelated to actual blood glucose concentrations. It is theorized that effects on the body's glucose monitoring pathways is involved in weight gain from anti-depressants, but it really hasn't yet been proven that that is the primary cause. There is some good evidence, from what I've seen, that metabolic Syndrome X really is a big part of the problem with many of these drugs -- notably Zyprexa. On the other hand, whether the weight gain associated with those drugs causes Syndrome X, or the drugs somehow cause Syndrome X on their own leading to weight gain is still unclear.
Sorry, that's my little mini-soapbox. I'm in favor of the scientific method, of theory following behind facts, and get a little suspicious of facts being found to support existing theories, if you know what I mean.
If you did check your blood glucose on a properly calibrated glucometer, of course, then it's all moot, anyway.
And, by the way, although I never attributed it to the Effexor until much later (after reading that Effexor does affect blood sugar), my blood sugar readings did fluctuate pretty wildly on Effexor. Mostly, though, it was hyPERglycemia, rather than hyPOglycemia.
Posted by Daniel Woodfield on June 6, 2004, at 15:39:54
In reply to Only regarding the hypoglycemia issue, posted by Racer on June 6, 2004, at 14:30:03
I didn't check my levels while i was on the paxil im afraid, no.
Like i said in my post i was too suicidally depressed while on the Paxil, i just did what my body told me to do, which was basically sit, eat and drink alcohol for nine months.
While being off the Paxil i have lost 90 lbs by doing the Atkins diet which has been excruciating while dealing with the Hypoglycemia symptoms every day.
Incidentally i actually dont believe that my blood sugar levels actually dip that low, although that is statement without fact.i personally believe my body now thinks the blood sugar levels are low because there are never any spikes, i mean i literally don't eat any sugar anymore at all, save vegetables at night time, following which i probably feel my best, although my heart still races so i dont think the kick of Carbs is enough for my hormones to truly believe my blood sugar is back to normal, when it all probabiblity it is perfect.
My theory is that taking a drug i didn't need (and at high levels), has set an unbalance in my body which doesn't know how to even itself out and is causing my hormonal system to be confused.Whether trying to attack the Dopamine system or the NE system (Who knows) will help get back in rythm is something i am trying to investigate, but its hard over here because the doctors aren't interested, and hypoglycemia isn't considered to be a disease that effects anyone except diabetics who have taken too much insulin.
My doctor says that anxiety causes it, however i know this to be rubbish.i was put on Paxil in the first place because of anxiety and my symptoms were horrednous then, but this is something totally not right.
If anything the Hypoglycemia symptoms cause me anxiety, which is a shame because i could actually live some kind of life even with the problems i noted in my first post if i didn't have the hypoglycemia symptoms.
So as it stands, it was a serotonin drug that caused the hypoglycemia (there is a woman doctor who has devoted her life to hypoglycemia who campaigns daily to screen people throughly before putting them on SSRIs for complications they can be caused later in the form of Hypoglycemia due to increased serotonin levels), so i can only predict and hope that a drug that touches other chemicals can help.I think my dopamine systems have always been compromised, but i read today that NE meds such as effexor and adrafinil can raise blood sugar so that was interesting.
We shall see.
Posted by Daniel Woodfield on June 6, 2004, at 15:42:08
In reply to Re: Only regarding the hypoglycemia issue, posted by Daniel Woodfield on June 6, 2004, at 15:39:54
Excuse my spelling in my above post,
im tired.
no change there then ;)
Posted by Racer on June 6, 2004, at 17:32:07
In reply to Re: Only regarding the hypoglycemia issue, posted by Daniel Woodfield on June 6, 2004, at 15:39:54
Again, this is just about the hypoglycemia, because that's the only part of this that I do know enough about to comment. You wrote:
"Whether trying to attack the Dopamine system or the NE system (Who knows) will help get back in rythm is something i am trying to investigate, but its hard over here because the doctors aren't interested, and hypoglycemia isn't considered to be a disease that effects anyone except diabetics who have taken too much insulin."
Heheheh, guess what? "Hypoglycemia" really *isn't* a disease. It is, however, a symptom. What it is a symptom of can be a much more difficult question to answer.
Here is a suggestion when speaking to the doctor: Tell him what you're experiencing and ask him about taking either a glucose tolerance test, or keeping a daily diary of what you eat and drink, and frequent blood glucose readings on a properly calibrated glucometer. The home glucometers available now are quite good, and usually not all that expensive. If you have insurance, the doctor can often prescribe one, to bring down the cost of the strips.
Here's my actual point:
Once you go in there and say, "Dr, I'm suffering from a disease called Hypoglycemia," he's likely to respond, "Hypoglycemia is not a disease, and it only happens to diabetics who take too much insulin," right? So, instead, try walking in there and saying something more like, "Dr, you've said that what I'm experiencing is anxiety, and unrelated to my blood sugar. Could we check that out with empirical data, so that you can prove to me that it really isn't my blood sugar?" (NB: Yeah, it really helps the DR EGO thing to phrase it as "I'm willing to believe it, since you say it's so, but I'd like some reassurance before I commit myself." Doctors can have prickly egos, right?) Doing something like that would do a couple of things:
1. Keeping a journal of intake and glucose readings would show pretty definitively whether or not you are experiencing hypoglycemic episodes.
2. Doctors like empirical evidence, so he's more likely to support your efforts to provide it than to accept your self-reports of hypoglycemia.
3. Hypoglycemic episodes can happen to non-diabetics, but they are relatively rare. The symptoms of hypoglycemia really do mimic the symptoms of anxiety for a lot of people, and what you're experiencing really might be anxiety. It really might be a hypoglycemic episode, too. Keeping a record of what you eat and what it actually does do to your blood sugar would allow you to find out what's really going on.
4. Suggesting something to break the logjam over this issue will give both you and your doctor a graceful way out of what sounds like a very frustrating situation for both of you. It allows both of you a chance to start making more positive steps towards helping you feel better.
Now that I've said all that, I'll say one last thing before moving on:
It may sound as if I'm saying that hypoglycemia isn't real, but I'm not. It is very real, and some of these drugs really can cause fluctuations in blood sugar. What I'm trying to say is that self reports of rare phenomenon really aren't well received by many doctors. (My own experience: My doctor asked me to keep a week's record of frequent blood sugar readings a few years ago, followed by a fasting glucose test in her office. When I got to the office, the doctor wasn't there, and the Physician's Assistant refused to do the test because she "didn't believe hypoglycemia is a disease." About an hour and a half later -- remember, "fasting test" -- the doctor came in and had someone else do the test, while telling the PA that, "Hypoglycemia isn't a disease, but it IS a real symptom, and when I order a test I want it done.") If you offer an alternative to the head-butting that sometimes gets started over something like this, I think you'll probably get a much better response from your doctor.
Best luck to you.
This is the end of the thread.
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