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Posted by Dr. Bob on July 15, 2004, at 19:27:38
In reply to Re: BarbarCat, i got Chem-ed!!!, posted by KaraS on July 15, 2004, at 19:05:37
Posted by Larry Hoover on July 18, 2004, at 11:23:45
In reply to Re: Sounds like a question for CHEMIST! » chemist, posted by BarbaraCat on July 13, 2004, at 14:41:36
> I am going to be delving into methylation land for the next bit. There is a common thread that's appearing to all this, first with the histamine hypothesis and the tie with with possible methyl doner malfunctioning.
Easy enough to supplement to target methyl donation.....betaine and B-12.
> The reason it jangled my bells is that I had a serious reaction to Lamictal all the while I was taking it and eventually stopped. Stevens Johnson developed from taking DMPS, a heavy metal chelator with a high affinitiy to thiol groups (in my case trying to chelate mercury) so there could be a possible tie in with the histimine/methylation relation, if there is one, and a possible breakdown of sulfur/thiol metabolism.
DMPS has a substantial impact on all metal cations. If I recall correctly, it is about 30 times more effective at removing zinc than mercury. Serious business, using chelation therapy. All too often, it is poorly managed, from a medical perspective. If mercury is a potential toxicant, take selenium. It will covalently bond to the mercury, totally inactivating it. The solubility constant for Se-Hg is on the order of ten to the -70. In other words, you would require roughly 10 to 46th power litres of water to dissolve one molecule. In other other words, it is so insoluble that its solubility can't be measured. The mercury will stay in your body, but it will be totally inert.
Thiol/sulphur metabolism is absolutely disturbed in fibromyalgia. That's why I've been pushing taurine. It's the sulphonic acid version of GABA.
> The other clue is that I have fibromyalgia and some recent studies have identified a epithelial mast cell inflammatory involvment which may account for the heightened skin nerve pain response. But also, ta-da, a malfunctioning histamine response at skin receptor sites seems to be involved, which would predispose one towards an inflamed skin pain sensitivity but also a heightened alergic response resulting in the erythema multiforme 'rash' (which is a severe separation of mast cells from the epithelial substrate). Mast cells -> histimine. There it is again.Niacinamide down-regulates histamine synthesis, and also blocks mast-cell degranulation (histamine release). It also, coincidentally, is an agonist at GABA receptors.
FASEB J. 2003 Aug;17(11):1377-9.
Nicotinamide: a potential addition to the anti-psoriatic weaponry.Namazi MR.
Dermatology Department, Shiraz University of Medical Sciences, Shiraz, Iran. namazi_mr@yahoo.com
Psoriasis is an inflammatory disorder characterized by a T helper type 1 cell cytokine pattern. Increased expression of adhesion molecules, prominent neutrophil accumulation, and increased production of nitric oxide are characteristics of this disorder. Moreover, histamine and proteases are supposed to participate in the pathogenesis of psoriasis. Nicotinamide is an inhibitor of poly (ADP-ribose) polymerase-1 (PARP-1) that, through enhancement of nuclear kappa B-mediated transcription, plays a pivotal role in the expression of inflammatory cytokines, chemokines, adhesion molecules, and inflammatory mediators. Through interaction with CD38 and inhibition of IL-1, IL-12, and TNF-alpha production, nicotinamide produces a mild TH2 bias. Nicotinamide is a potent phosphodiesterase inhibitor and suppresses neutrophil chemotaxis and mast cell histamine release. It inhibits nitric oxide synthase mRNA induction and suppresses antigen-induced lymphocyte transformation. Nicotinamide increases the biosynthesis of ceramides, which upon degradation produce sphingosine. Sphingosine inhibits protein kinase C (PKC) and decreases basal cell proliferation dependent on PKC. Taken together, it can be reasoned that nicotinamide could be a useful addition to anti-psoriatic armamentarium. The combination of nicotinamide and thalidomide or methotrexate provided a powerful synergistic inhibition of murine collagen-induced arthritis. Nicotinamide decreased the methotrexate-induced hepatotoxicity. The above combinations may prove to have a powerful anti-psoriatic effect as well. As PARP inhibitors could exert anti-retroviral effect, nicotinamide could also be of special value in the treatment of HIV-infected psoriatics.
I expect this topic to be redirected, but I hope that a greater audience is exposed to some of these concepts, here on the main Babble board. Alternative medicine is drug-augmentative. There's a lot more you can do than get prescriptions filled.
Lar
Posted by BarbaraCat on July 18, 2004, at 17:19:22
In reply to Re: Sounds like a question for CHEMIST! » BarbaraCat, posted by Larry Hoover on July 18, 2004, at 11:23:45
Ah, Larry, you are amazing. You've been away and you have been missed! I wish I could make an appoinment with you. You've given me more info tha 20 doctors I've been to in the last 2 years. I'm a little wary of going the methyl doner path since I seem to fit the histademia model, which spells high-methylation. I feel like I'm in a vice with my vitamin bottles. Oh, and I have high iron levels as well and Vitamin C recirculates iron, so can't take C. Taurine is about the only thing I trust. Something's going on with my metals metabolism. Maybe it has to do with low zinc, B6. But if not, if I over produce B6 I could get into trouble. Perhaps my toxic load of mercury is at the heart of everything.
I'll be going to a functional MD this week for some major testing in this area. But I'd be surprised if he mentions using selenium for mercury inactivation since his lab is filled with people hooked up to chelation IV lines. I've learned my lesson in that area - no chelation for me. It gets so disheartening when it starts dawning that every one of these 'healers' we desperatly seek out are in it to extract our money.
I am so discouraged, depressed, and angry. I go about life just fine, start making plans, taking classes, getting a life back again. And bam! I'll wake up totally in pain, fatigue, can't sleep, stiff, depressed, befuddled. I can't figure this thing out and feel like I'm spinning my wheels and spending money I don't have on my meagre disability earnings.
I don't care if this gets redirected to whatever category it rightly fits into. If this were you, Larry, what would you do? What supplements would you take, what doors would you pound on, who knows anything? Thanks you bearing with me during this outpouring. It helps. - Barbara
Posted by Larry Hoover on July 19, 2004, at 10:51:31
In reply to Re: Sounds like a question for CHEMIST! » Larry Hoover, posted by BarbaraCat on July 18, 2004, at 17:19:22
> Ah, Larry, you are amazing. You've been away and you have been missed! I wish I could make an appoinment with you. You've given me more info tha 20 doctors I've been to in the last 2 years.
Oh, my. I don't know what to say. thanks
> I'm a little wary of going the methyl doner path since I seem to fit the histademia model, which spells high-methylation.
You're using Pfeiffer's categories, I take it. Two things about the thinking processes involved. Invoking a model makes comprehension simpler because a model invariably leaves out information. The danger lies in treating the model as if it is a real entity (that's called reification). The second thing is that the lines between any such categorization system are arbitrary. Mother Nature herself does not draw such lines. Few people would fit nicely into those abstract pigeon-holes. Most will straddle the lines, no matter where they are placed.
> I feel like I'm in a vice with my vitamin bottles. Oh, and I have high iron levels as well and Vitamin C recirculates iron, so can't take C.
Your serum ferritin is high? You have hemochromatosis? The answer is blood-letting, not vitamin C avoidance.
> Taurine is about the only thing I trust.
I trust taurine, too. Moooooooo.
> Something's going on with my metals metabolism. Maybe it has to do with low zinc, B6.
The metals are a toughy. Different tissues have vastly different concentrations, and also ratios of concentrations. You mentioned chelation....if you had that, without receiving IV mineral reconstitution, it's little wonder your metals are messed up.
> But if not, if I over produce B6 I could get into trouble.
I wouldn't worry in the least about too much B6. Really. It would fix your sulphur problem. And you don't produce B6. We take it in its provitamin form, in supplement pills. It's not active as pyridoxine. Your liver has to phosphorylate it, to P-5-P. Then it becomes more reactive, and it can participate as a cofactor in enzymatic reactions.
> Perhaps my toxic load of mercury is at the heart of everything.
Mercury is probably the worst commonly found toxicant in existence. Its net effect is to substantially increase oxidative stress. Oxidative stress is a general, non-specific effect, which targets anything vulnerable to oxidation. Guess what those things might be. High on the list are polyunsaturated fatty acids. Even higher on the list are thiols. At about the same level is DNA, but the latter has better protection than e.g. cell membranes or thiol-containing proteins.
> I'll be going to a functional MD this week for some major testing in this area. But I'd be surprised if he mentions using selenium for mercury inactivation since his lab is filled with people hooked up to chelation IV lines. I've learned my lesson in that area - no chelation for me. It gets so disheartening when it starts dawning that every one of these 'healers' we desperatly seek out are in it to extract our money.
It seems so, doesn't it?
> I am so discouraged, depressed, and angry. I go about life just fine, start making plans, taking classes, getting a life back again. And bam! I'll wake up totally in pain, fatigue, can't sleep, stiff, depressed, befuddled. I can't figure this thing out and feel like I'm spinning my wheels and spending money I don't have on my meagre disability earnings.I can't even afford some of my own ideas. Ya, I understand that issue. I know of exactly what you describe.
> I don't care if this gets redirected to whatever category it rightly fits into. If this were you, Larry, what would you do?One thing I would do, is to take a deep breath. Then another one, and so on, until the feeling passes.
> What supplements would you take, what doors would you pound on, who knows anything? Thanks you bearing with me during this outpouring. It helps. - Barbara
Have you ever read the articles by Dr. Pall? His links aren't working at this moment, for some reason, but... http://molecular.biosciences.wsu.edu/Faculty/pall.html
He's developed a unified theory that relates chronic oxidative stress to the symptoms of fibromyalgia, chronic fatigue and PTSD, along with biochemical markers for these. He also corresponded with me a couple years back, and gave me some dietary recommendations. Unfortunately, those emails are on a malfunctioning computer, and I haven't been able to get the bugs out to access the data, yet.
I hope you gain some assurance from the fact that you do not walk this path alone.
Lar
Posted by BarbaraCat on July 19, 2004, at 11:28:23
In reply to Re: Sounds like a question for Lar! » BarbaraCat, posted by Larry Hoover on July 19, 2004, at 10:51:31
Thanks, Larry. Feeling a lot better today. Those fibro flares are the pits, although I was able to sustain more hope during it than with others. Yes, I was referring to Pfeiffer's classifications, which I don't take as Gospel. A bit too pigeon-holey, plus I haven't heard much in the way of success with depression or bipolar disorders from their clinic.
The link didn't work, as you said. Anything you can dig up in the future would be appreciated. I know how it goes with a clobbered computer. My laptop was invaded by a scum-ware worm over the winter and it took 3 weeks of non-stop little-sleep damage control. Felt like invasion of the body snatchers. A good lesson in keeping virus definitions up to date.
In the meantime, I'll do a search with his name and other combinations of 'oxidative stress'+fibromyalgia. I'll let you know how the Functional MD visit and tests go if you'd like. Take care. - Barbara
Posted by Larry Hoover on July 19, 2004, at 11:41:10
In reply to Re: Sounds like a question for Lar! » Larry Hoover, posted by BarbaraCat on July 19, 2004, at 11:28:23
> In the meantime, I'll do a search with his name and other combinations of 'oxidative stress'+fibromyalgia.Pall's work centers on peroxynitrite. That will focus the search, using that keyword.
> I'll let you know how the Functional MD visit and tests go if you'd like.
Please.
> Take care. - Barbara
And you,
Lar
Posted by BarbaraCat on July 19, 2004, at 12:26:16
In reply to Re: Sounds like a question for Lar! » BarbaraCat, posted by Larry Hoover on July 19, 2004, at 11:41:10
My search pulled up quite a few very relevant hits. Very very interesting. Good fuel for my upcoming visit. Thanks again, Lar. - Barbara
Posted by tepiaca on July 20, 2004, at 2:11:49
In reply to Re: Sounds like a question for CHEMIST! » BarbaraCat, posted by Larry Hoover on July 18, 2004, at 11:23:45
Posted by Larry Hoover on July 20, 2004, at 9:49:32
In reply to Re: Sounds like a question for Lar! » Larry Hoover, posted by BarbaraCat on July 19, 2004, at 12:26:16
> My search pulled up quite a few very relevant hits. Very very interesting. Good fuel for my upcoming visit. Thanks again, Lar. - Barbara
You're welcome. And let us know how your intuition is guided by these new thoughts. You have much to contribute, as well.
Lar
Posted by leo33 on July 23, 2004, at 14:08:19
In reply to Glad you are back larry =) (nm), posted by tepiaca on July 20, 2004, at 2:11:49
Posted by noelle on August 12, 2004, at 19:41:16
In reply to Re: Seroquel users: a couple of questions (HELP) » cpallen79, posted by BarbaraCat on July 11, 2004, at 2:48:41
> Have you considered you might be BP-II? Your recurring agitated depression might warrant further investigation. Agitated dysphoric depression has been the bane of my life but I always thought I had unipolar depression and never considered it might be part of the bipolar spectrum. I'd always considered bipolar 'mania' as the classic grandiose mapcap stuff, not the panicked agitated mixed states hell I experienced or the irritibility and pissed-offness. I'd been on SSRI's for many many years and they worked fairly well, but then the agitated depression broke through big time. Kept increasing the SSRI, got twitchy akathisia from too much, got no relief from the agitated depression, fell apart, and ended up hospitalized. Through this board and other research and self-reflection it became clear that my symptoms were pretty classic BP-II. I've learned the hard way time and time again that if I don't take lithium, no matter what else I take I'll eventually descend into a bleak agitated hell.
>
> The thing with bipolar is that during the manic phase my thoughts can get very disorganized and my behavior looks very much like ADD. In fact, there are definite overlaps between the two disorders. My self medicating drug of choice during my younger years was speed. But throughout the years, stress took a heavy toll and pstims now send me over the edge. I may have been ADD and unipolar depressed at first, but I can't help thinking that high dose SSRI's exacerbated a latent bipolar disorder.
>
> Lithium has worked wonders for me, although it's not the best choice for everyone. A mood stabilizer is critical for anyone bipolar if they take an antidepressant. Otherwise, SSRI's can easily kindle an agitated depression. This might be old news to you but just thought I'd share this in case not. When I hear severe agitated depression, I immediately think 'dysphoric hypomania' and bipolar mixed states. Very uncomfortable stuff - oh I know it well and am soooooo grateful that lithium works for me. BTW, trazodone was a great med for me while it worked. Put me to sleep, helped my depression, a great antianxiety med. Hell to wake up on but after a few jumping jacks and a shower I was ready to go. The problem was that after a while it too stopped working, probably because I needed lithium. And it does slow you down during the day, but if you've got agitated depression, that's not a bad thing. One thing you might try is taking L-taurine which acts as a natural mood stabilizer and might even take the place of a prescription med. - BarbaraCat
>
>
> > Hey Chemist, thanks for the follow up. You want to know something wierd? The adderall actually calms me down! It's when it wears off that I'm not as well. I guess it tends to have a paradoxical effect on us ADD'ers. The lexapro lifted me out of the depths of severe anxiety/agitation. To make a long story short, I had a nervous breakdown in February due to severe stress (my guard was also most likely down due to a painful effexor w/d that I went through about a month prior to the breakdown) and i went into a nasty agitated depression with what can only be described as akathisia symptoms. That's why I'm so frustrated by the seroquel setback, I never want to go back to that place again, and that akathisia felt alot like the agitated depression I've been battling to overcome. I'm hoping Trazodone will do the trick for a good night's sleep. My PDOC wants me to avoid Benzos because we have some nasty addiction issues in our family and I think everyone's weary enough of me taking a stimulatnt for A.D.D. Guess I'm not sure what to do...
>
Wow,
I was reading your post and its the first time I found someone describing exactly what I have been going through for years. I been on every antidepressent but their effects work one day and then I have that agitated depression( and stim ) I always think its some that sends me on this 3 days good one day bad cycle. (i.e. I drank the night before, or I had too much caffiene) but I'm thinking I may need a mood stabilzer. The trick is getting my shrink the believe this might be the case. I am not however going on lithium, (scared of weight gain). I was considering lamictal. Any advise.
Posted by BBoo on August 16, 2004, at 11:09:30
In reply to Re: Seroquel users: BarbaraCat, posted by noelle on August 12, 2004, at 19:41:16
Hi, hope I'm doing this right. I'm so glad I found this site. I've been on Seroquel for about 2 years, at least, but I only take 25 mg at night. I also take Wellbutrin, Topamax, and Lexapro. Over the last 6 mos. or so I have noticed that I am always hungry--physically, literally--hungry. About 3 hours after I eat a good meal, I start feeling shaky, light-headed, etc. and my stomach feels like it's going to growl. I get headaches a lot. I've gained about 10 pounds. This is NOT good because I am also a recovered/recovering bulimic. Two weeks ago I had blood work done and everything was within the normal range. But everything I'm reading here sounds just like me. My doctor says the Seroquel COULD be causing the hunger but that I'm on such a low dose it's unlikely. My therapist wants to think it's "emotional" hunger but it feels very real. Does anyone have any suggestions or advice? Thanks for any help!
Posted by PoohBear on August 16, 2004, at 14:24:19
In reply to Seroquel users: a couple of questions, posted by Nohope on April 25, 2004, at 0:50:43
I wanted to add my experience and two cents, for what they're worth...
I have been on Seroquel for sleep (100mg each night) after experiencing horrific weight gain on Remeron. It's been great for sleep, but after reading this thread I now think I realize why I have been ravenously hungry and have not dropped the weight from the Remeron, but have GAINED.
I made "GOAL" with Weight Watchers on 12/28/03. I gained 12 pounds in two weeks in 01/04. My pDoc was alarmed and we dropped the Remeron in favor of Seroquel (100mg per night) for sleep, with the added benefit that it "might" help with mood swings, since I am also atypical BP as well as ADHD and chronically depressed. I did not know that the Seroquel could be causing increased weight, since my pDoc billed it as "weight-neutral".
Obviously, to echo information in some of the links above, this has not been that great emotionally, though the Effexor seems to add to the "don't care" attitude.
I am currently up 23 POUNDS above my original ghoal, and in fact had to modify my goal to 220 from 200, which always gives me the nagging feeling that I'm "cheating". I have a dear friend that I used to mentally berate for using Paxil as an excuse for weight gain: I now know better.
Okay, so that's three cents, but there ya go...
Tony
Posted by nicolas on August 18, 2004, at 19:25:46
In reply to Seroquel users: a couple of questions, posted by Nohope on April 25, 2004, at 0:50:43
In my experience with Seroquel the sedation does wane after a few weeks but never goes away entirely. Mornings were very difficult for me while I was on Seroquel.
Posted by southernskies on August 20, 2004, at 17:04:59
In reply to Re: Seroquel users: Weight Gain and Sleep (nm), posted by southernskies on August 20, 2004, at 16:57:58
I've been on Seroquel for about 5 months now. Have gained over 50 pounds, most of which were gained during my first 6 weeks on the drug. My dosage was just lowered to only 300mg PM dose, along with 10mg AM Lexapro & 20mg PM Lexapro and 800mg total daily of Tegretol. My pdoc doesn't consider how detrimental such weight gain is to me (age 40 w/ heart disease & diabetes rampant in my families). I partcipate in indigent care, so there are limitations in my care. He did agree to ADD Geodon to my cocktail, but not replace or reduce the Seroquel. Would doing so help me lose weight? I've read y'all's posts about taking a low dose for insomnia. Perhaps I could go that route? Anxiously awaiting your informed responses...
Southernskies
Posted by fluffy on September 10, 2004, at 17:42:42
In reply to Re: Seroquel users: Weight Gain and Sleep, posted by southernskies on August 20, 2004, at 17:04:59
Hi Chemist--
I've enjoyed reading your knowledgeable and insightful posts. Here's the deal: I've been on everything for my rapid cycling bipolar II-- lamictal, trileptal, lithium, zyprexa...couldn't tolerate them due to unacceptable side effects.
Now I'm taking 750mg of Depakote, which has slowed the cycling, but still leaves me with an "agitating" high--I feel like I'm itching inside, I'm all speedy. And I dip down into a low that I could only describe like the negative symptoms of schizophrenia--withdrawn, blunted, numb, anhedonia. My doc and I added .25mg of Risperdal which helps the agitation and has allowed me to sleep again. Also I've regained my appetite (I gained 10 lbs).
However, I still feel so flattened out with no emotions. I recently tried to switch to Abilify, but it agitated me to an extreme--bad anxiety, insomnia. I want to know if Seroquel might be less flattening and help the more negative symptoms of my cycling. I feel like I have no personality. It's ruining my art, my social life. I just want to sit and stare into space. Alchohol seems to lessen the antisocial feelings. And I don't want to get into that trap.
What are your thoughts on Seroquel and "negative symptoms"?
Thanks,
Katy
Posted by KaraS on September 12, 2004, at 18:18:50
In reply to Chemist--i need your help--you still here?, posted by fluffy on September 10, 2004, at 17:42:42
FYI, chemist has been blocked. I think he has a week or so left on his sentence. (Just didn't want you to think that he was ignoring you.)
Posted by BarbaraCat on September 12, 2004, at 20:47:04
In reply to Chemist--i need your help--you still here?, posted by fluffy on September 10, 2004, at 17:42:42
Hi Katy,
Jumping in here after being away for a few months. So sorry to hear you're having these hard times. I can't help but think that you're on a very high dose of Depakote and it doesn't seem to be working as well as such a high dose would warrant. It concerns me because Depakote, like Lamictal, has been known to cause 'The Rash'. You just don't hear it mentioned as often. That inner itching is something I experienced from Lamictal and eventually ended up with full blown Stevens Johnson from another drug entirely, but I think that itching was a sign that an inflammatory condition was activated.Which doesn't answer your original question but maybe I could add my own experience with Seroquel. I personally did not do well at all with Seroquel and felt like I'd been bonked on the head and wrapped in fuzz. I understand that goes away but it also left me feeling very depressed. But that's just my chemistry. I know that Katia fared pretty well on it.
If you're already taking Rispirdal I don't imagine that Seroquel is going to be all that much of an improvement. It doesn't seem like antipsychotics are the answer, but more like dealing with symptoms caused by something else. Just a hit, but maybe Depakote is not the appropriate med for you, at least at such high doses. Again, I'm concerned about the itching which tells me that your immune system is activated and fighting inflammation.
I wish I could be more helpful. I'm currently doing very well on St. John's Wort and low dose lithium. When things get wired I take oxazepam (similar to Ativan) for anxiety. Anything that pulls me together long enough to get some exercise and daily meditation, which help more than anything but can't do when I'm frazzled. I'm surprised at how well the St. John's Wort is working (I'm taking HBO Protocols which seems to be the most effective brand for me). But it's bad news without the 600mg lithium.
I have to share my observation that life seemed better for you when we talked a while back. Time for med tweaking. I sure hope your pdoc can pull a rabbit out somewhere. Hugs, Barbara
> Hi Chemist--
>
> I've enjoyed reading your knowledgeable and insightful posts. Here's the deal: I've been on everything for my rapid cycling bipolar II-- lamictal, trileptal, lithium, zyprexa...couldn't tolerate them due to unacceptable side effects.
>
> Now I'm taking 750mg of Depakote, which has slowed the cycling, but still leaves me with an "agitating" high--I feel like I'm itching inside, I'm all speedy. And I dip down into a low that I could only describe like the negative symptoms of schizophrenia--withdrawn, blunted, numb, anhedonia. My doc and I added .25mg of Risperdal which helps the agitation and has allowed me to sleep again. Also I've regained my appetite (I gained 10 lbs).
>
> However, I still feel so flattened out with no emotions. I recently tried to switch to Abilify, but it agitated me to an extreme--bad anxiety, insomnia. I want to know if Seroquel might be less flattening and help the more negative symptoms of my cycling. I feel like I have no personality. It's ruining my art, my social life. I just want to sit and stare into space. Alchohol seems to lessen the antisocial feelings. And I don't want to get into that trap.
>
> What are your thoughts on Seroquel and "negative symptoms"?
>
> Thanks,
> Katy
Posted by fluffy on September 15, 2004, at 10:43:56
In reply to Re: Chemist--i need your help--you still here? » fluffy, posted by BarbaraCat on September 12, 2004, at 20:47:04
Hi Barb-cat!
Glad to hear you are at an equilibrium with your moods. I'm so glad you jumped in.
Yeah--I'm having a hard time right now. Feeling pretty fragile. I'm so tired of these Fall depressions that i could just puke. It takes all of my mental energy to just eat and try to keep the negative thoughts from overwhelming me.
hmm. The inner itch. It felt like an inner agitation. And when my doctor put me on Risperdal, it magically wiped it away. (which I was thankful for). And the inner agitation was accompanied by an increased libido and racing thoughts. So I associated it with the "up" of my cycle. Unfortunately, the Risperdal has done little for the downs. And like I posted before, I feel wiped of my personality. so I'm not sure if it's the depakote to blame or for me, the more obvious culprit, the risperdal.
If I ditch the depakote, though, I'm not sure what's next for me. I seem to be at the end of the rope in terms of conventional treatments. I've always had a haunting feeling that my thyroid is somewhat to blame. (my mom has thyroid disease). I've thought about running the notion of being on T4 or T4/T3 combo by my doctor as a main mood stabilizer to see what would happen. All I know is that no matter what we've tried, nothing seems to dent the rapid cycling pattern I've been in for 2 years now.
I'm exhausted. The idea of going through med changes and another Fall...well...I just don't feel right now like I can take it.
I've started to date a wonderful man. And I feel like such a freak. I don't know how to tell him that this is what I go through. he knows that i'm bipolar.. But right now, my heart just isn't in anything, let alone a new relationship. I just don't know what to do. I feel like I'm at my wit's end with all this. And i don't know if or when I'll feel recovered from this nasty illness. I hate it.
Sorry to be so negative. I can't help it. It helps to write some of my angry thoughts down.
Thanks Barb-cat,
Katy
Posted by Barbaracat on September 15, 2004, at 13:24:51
In reply to Re: Chemist--i need your help--you still here?, posted by fluffy on September 15, 2004, at 10:43:56
> Glad to hear you are at an equilibrium with your moods. I'm so glad you jumped in.**It's good to reconnect with you. We have a great community here, like old friends you haven't seen for a while but you resume right where you left off. Yeah, I'm doing pretty good these days as long as I stay away from alcohol which I find hard to do at times. It always brings my mood and physical well-being down. I truly believe that alot of my improvement has been to doubling my thyroid medication. More on that further on down.
>
> Yeah--I'm having a hard time right now. Feeling pretty fragile. I'm so tired of these Fall depressions that i could just puke. It takes all of my mental energy to just eat and try to keep the negative thoughts from overwhelming me.**I think the hardest part is the fear of where those negative thoughts will take us, swamp us. It's like trying to hold back a dark tidal wave. No wonder it's exhausting.
>
> hmm. The inner itch. It felt like an inner agitation. And when my doctor put me on Risperdal, it magically wiped it away. (which I was thankful for). And the inner agitation was accompanied by an increased libido and racing thoughts. So I associated it with the "up" of my cycle. Unfortunately, the Risperdal has done little for the downs. And like I posted before, I feel wiped of my personality. so I'm not sure if it's the depakote to blame or for me, the more obvious culprit, the risperdal.**I've been reading alot about the neuroleptics and how they have this strange effect on dopamine, being agonists on some dopamine receptors and antagonists on others and it's difficult to predict which one will do what. Dopamine is the supposedly 'feel good' neurohormone and accounts for hypersexuality. So if Risperdal cooled down those buzzed feelings, chances are it is a potent dopamine antagonist. Which is not a good thing if you're now deficient in dopamine cause you'll feel tired, drab, and without much interest in anything.
>
> If I ditch the depakote, though, I'm not sure what's next for me. I seem to be at the end of the rope in terms of conventional treatments. I've always had a haunting feeling that my thyroid is somewhat to blame. (my mom has thyroid disease). I've thought about running the notion of being on T4 or T4/T3 combo by my doctor as a main mood stabilizer to see what would happen. All I know is that no matter what we've tried, nothing seems to dent the rapid cycling pattern I've been in for 2 years now.***Girl, if your Mom had low thyroid chances are you do too. I've had it for years and years. My Mom had it, and a few Aunts. I was treated by the conventional T4 then moved on to a natural product with T3/T4 and was relatively stable for years. Lithium damages the thyroid and my TSH levels were literally ping-ponging over the charts. My TSH tests were coming back in the high range, I felt cold, tired and my fibromyalgia symptoms were awful. So I made an executive decision to double my dose (now on 2 grains of Westhroid which is like Armour).
Katy, I can't believe the difference it made, especially in the area of muscle weakness, pain and fatigue. That inner agitation you were talking about is paradoxically a symptom of low thyroid. Hypothyroidism can cause panic, anxiety along with the dragging depression, fatigue and body chill and stiffness.
I'm even thinking of raising it 'just to see'. I don't trust TSH tests because they don't measure what the cells are actually metabolizing. I go on my average temperature readings taken 3 times throughout the day for 3 days. If it's lower than 98.2, I'm hypothyroid. Pretty simple.
I think the St. John's Wort and lithium are helping to give my neurochemistry a boost, but without adequate thyroid it would be a very sluggish ineffective boost. Nothing works if your thyroid is sluggish. So I very highy recommend you drag your poor weary body to someone who is willing to let you try it and hopefully it won't be a conventional endo. Yes, definitely T3/T4. Don't let anyone talk you into T4 only. Been there, done that and it doesn't work.
>
> I've started to date a wonderful man. And I feel like such a freak. I don't know how to tell him that this is what I go through. he knows that i'm bipolar.. But right now, my heart just isn't in anything, let alone a new relationship. I just don't know what to do. I feel like I'm at my wit's end with all this. And i don't know if or when I'll feel recovered from this nasty illness. I hate it.**Congrats on the man, but whew, talk about stress! You always feels like you have to be 'UP' and perky in order to not lose them. It's exhausting. Hopefully he's someone who's been there and can relate and have compassion for a person he cares about. You might tell him that there will be times when you won't be available because you're working things through, that it won't always be like this (it won't) and that he's met you at a real vulnerable time in your life. I guess what I'm saying is don't pretend but also don't subject him to the worst. We know how crazy and dark this stuff can make us and that's alot of ask of anyone who hasn't been on the road with us for some time. You can't make him your shrink but on the other hand, maybe there's something he can relate to from his own life and would welcome sharing with you. Getting the other person to talk about themselves is a great way to bond with that person, gives you a break from having to think of what the heck to say, and is a give and take exchange that can open your hearts, no matter how screwed up you're feeling. If you can find that little soft spot of heart and tenderness, it will spread out and flow. We've all been there and we all want to help another given the chance. The most important thing, however, in the early stages is to have a safety net where you can go when you're feeling really weird so as not to burden him with the scary stuff.
>
> Sorry to be so negative. I can't help it. It helps to write some of my angry thoughts down.
>
> Thanks Barb-cat,**Oh, you're very welcome. You've helped me alot. I really hope you're able to cry during this time. You end up looking like a puffy hag but it breaks up that stuck negativity. Keep me posted. And give T3/T4 a try.
Posted by fluffy on September 15, 2004, at 16:40:09
In reply to Re: Chemist--i need your help--you still here? » fluffy, posted by Barbaracat on September 15, 2004, at 13:24:51
Hi Barb-cat,
Thanks so much for that post. Lord knows I needed all that advice. So how would I tackle this thyroid topic with my doctor? I'm wondering if he'll just want to drug me up with more seroquel or something when I see him next. My guess is he'll want to raise the Risperdal, give it two weeks. If that doesn't do the trick, he'll want to try seroquel (because of all of the new clinical evidence, of course).
But I reallly want to tackle the thyroid thing with him very soon. Do you order your supplements in the mail or get them from the health store? Is hypothyroid a LOW thyroid functioning? I'll look some of this up.
As for the man. Well, I've decided that I can only do what I can do. You know? We're not that serious yet. And if it starts to get serious, then I'll let him in on my not feeling so well. Or if it just happens to come up in conversation--that I seem down to him or whatever, then I'll let him in on it. I'm not going to just drop a big bomb on him. It sucks much more for me than it does for him. I just have to remember that. I'm not actually causing him pain. I tend to think that when I'm at my lowest (you know--burdoning everyone in my life, etc.)
He's not been without depression in his life. And he has friends who are bipolar and depressives.Thanks again, Miss Barb-cat
Katy
Posted by Barbaracat on September 16, 2004, at 1:40:16
In reply to Re: Chemist--i need your help--you still here?, posted by fluffy on September 15, 2004, at 16:40:09
Hi Katy,
Hopefully your doctor is more enlightened than just dumping higher doses of the same non-effective meds on you. Lord, save us from this mentality. Hypothyroid is low thyroid. Hyperthyroid is too much. There's also thyroiditis which is an autoimmune condition. One of the best low tech ways to tell is to take your temp 3 times a day for 3 days. Take it as soon as you get up, at 11:00am and at 7:00pm. Or at least the same times every day. Don't do this when ovulating. Average the temps and if below 98.2 chances are good that you're hypothyroid.The standard thyroid test is the TSH test. There's a range of values, with 5 being the upper 'normal' limit (a higher value means lower thyroid functioning). Many doctors say you can live with the upper borderline values, but don't believe it. Especially for a mood disordered person, the value should be between 1 and 2.
A low thyroid makes everything awful. Not enough metabolic spark to do much of anything - digest food, make other hormones. Every system depends on having enough thyroid. Many many people are hypothyroid - it's a real epidemic. Our toxic chemical environment produces many endocrine disruptors that can damage the thyroid gland or mimic thyroxine molecule and occupy the receptor sites.
So there's a definite low thyroid disease condition with all the crummy symptoms that go along with it. But there's also other forms of thyroid disorder that don't quite fall into the 'disease' category but make you feel like sludge all the same. Pdocs will use thyroid hormone to augment other meds or to just jump start metabolism. The problem comes from giving too much when it's not needed. Your thyroid gland could halt it's own production and depend on the outside source if it's overprescribed. So it's best to verify a low thyroid condition by temperature testing, various blood tests. But sometimes none of these show anything and you just have to try it an see if it makes a difference. It's slow acting, so it's not an immediate effect.
As for my source, I went to a naturopath originally and now am seeing a 'functional medicine' MD who prescribes Westhroid (which I like better than Armour which is the most popular brand of natural thyroid). Unless your regular MD is hip to complementary medicine, you probably won't get much support for the natural T3/T4 brands. They will 90% of the time give you a synthroid generic brand, T4 only. Many of us have problems converting T4 into the active T3. This same scenario is true for most endocrinologists. No, no, when it comes to hormones I stay far away from conventional doctors.
If I were you I'd find a good naturopath or alternative physician. They'll give you much more sensitive tests and a natural product. They excel at hormonal issues. Go visit this website: thyroid.about.com. You'll find out more than you could imagine about thyroid disorders. It's a fabulous site. There's also a section on finding doctors under the Articles and Resources section.
Maybe it's not your thyroid at all but from my experience and those in the field, hormones are hugely majorly implicated in mood disorders. Think PMS. It wasn't just my thyroid that was off. My entire hormonal profile (I did blood work, urine and saliva tests) was warped and is slowly coming back into balance with natural hormonal therapy. No way in hell would psych meds help with that underlying imbalance.
Do some searching to find someone who will dig deeper into the hormonal labyrinth. You won't get the kind of detective work and treatment through conventional medicine channels. But then again, your current doctor may surprise you if you bring it up. Taking a synthetic T3 like Cytomel is OK too if your doc won't prescribe the natural. But the T3 is important.
About the boyfriend, just remember, we seldom appear as weird outside as we feel inside, and no one is a burden when they can manage to be interested and listen to another's life. It lifts the performance burden. A secret seems to be: breathe evenly, upright posture, and smile. Alot of it comes down to posture and facial expression, silly but true. There was an interesting book written on it. People will think you're exotic and mysterious instead of bipolar. You know, Mona Lisa having a meltdown. Who would ever know? Plus smiling triggers neural reflexes that make your brain think you're happier than you actually are. What a silly world. It would be nice if we could just ask for help and understanding when we really need it, but I don't think the majority of folks are that evolved. That's why we have therapists, journals, and our Babble Buds. Oh well, that's enough Dear Abby advice for now. - BCat
Posted by fluffy on September 16, 2004, at 12:01:07
In reply to Thyroid, Seroquel and stuff » fluffy, posted by Barbaracat on September 16, 2004, at 1:40:16
Hi again Barb-cat,
Thanks again for all of the helpful info. The last time my thyroid was tested, it WAS in between 1 and 2, which is very normal. (this was less than a year ago) It's just curious that my mom has these problems, and so I've always wondered if it was part of my equation. But i've heard that even if your thyroid is normal, thyroid hormone is used as a treatment for rapid cycling. So I suppose I'll ask my doc about this.
My pdoc is very methodical and ordered--he relies heavily on clinical reasearch, which he should. Because it would be a shame to not know if more conventional stuff does the trick. However, I seem to be such an unusual case--not fully responding to such conventional treatments, that I feel we should be more empirical.
As for the guy. Well...I got an e-mail today with the phrase, can we talk? in it. I'm taking a lunch break and then calling him to find out what his damage is. He may not be up for a full blown relationship either. Which might be a relief and a bit of a disappointment, too. I'll keep you posted.
As for the seroquel--I might give it a go. If it helps me sleep, then I would be very thankful. Also, I've been riddled with terrible anxiety in the mornings. The risperdal used to help both of these. So it may be that I need to either up the dose of the Risp or move on to Seroquel. There is very impressive research backing Seroquel as a bipolar antidepressant. I could definitely use some of that action. A lot to talk about at my upcoming appointment this monday.
I'll keep you posted. Thanks again for your wonderful support. I really need it right now. I'll do the same for you if you need it in the future!
Katy
Posted by fluffy on September 17, 2004, at 10:45:33
In reply to Re: Thyroid, Seroquel and stuff, posted by fluffy on September 16, 2004, at 12:01:07
Barb-cat,
I have to update you, even though I risk being deported to the "social" board. Well, my depressed brain saw the phrase "can we talk" yesterday, and I assumed there was trouble in paradise with the fella. Turns out he just wanted to talk about doing something this weekend.
But last night I was driving around, feeling restless and trying to decide whether I should level with him or not about my rough patch. I went to his place, and just told him that I've been depressed, and I may be going through a rough time in the next few weeks or so. He was so understanding. We got into a huge discussion about what "normal" is. He actually shared with me that he spent time in a mental hospital when he had a drug problem several years ago. (they lumped them all together) And he learned a lot from everyone there. He offered up his support anytime I need it, and meant it. Wow. Just goes to show how things inside your head are sometimes much worse than what other people percieve. I feel so relieved.
I still feel crumby in terms of being depressed, but at least that burdon has been lifted. Thanks again for all of the advice, wise sage Barb-cat. I hope you are well.
Katy
Posted by Barbaracat on September 17, 2004, at 16:57:30
In reply to Re: Thyroid, Seroquel and stuff, posted by fluffy on September 17, 2004, at 10:45:33
HI Katy,
I replied on Social so we don't have to worry about getting booted. Here's the link.http://www.dr-bob.org/babble/social/20040914/msgs/392070.html
Barbara
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