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climber47

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  1. This may be more applicable to those who have been depressed for years, but I’m just curious how many feel like they’ve accepted the fact that they’re depressed and does it help? my depression is weird. It’s certainly atypical (which I didn’t realize is an official diagnosis until a few years ago), meaning I can experience joy if something good happens more or less, but my basic default state is pretty miserable. Still, I have lots of ups and downs, so I have days where I feel almost normal (NOT any kind of mania with the ups, just normal). And I wonder if that’s why I think I struggle to reallyaccept that after 12 years I still just feel like shit for no reason... because those good/normal times are like a tease, but they always fade. It feels sometimes like I can shake it off or outrun it... like happiness or a cure is almost within reach if I could just try a little harder. I’m constantly trying to find any little thing that might help. I feel like if I could really accept this depression, maybe I could stop trying to outrun it. I’m not even quite sure what that looks like, but I’m so tired of the constant battle in my head, it feels like denial. Has anyone experienced this kind of thing?
  2. Interesting about NAC, I have some because I heard it was good for skin picking, but I haven’t tried it... buuut, sounds like it’s anither 6-8 week to kick in thing? Ugh, just not sure I can handle that anymore. I took a large dose (900 mg) of Gabapentin and I felt great for a few hours, but it wore off. I really got my hopes up. I tried 600 today and felt okay again for a few hours, not as good as last time but a bit better. It seems like it has potential, so maybe Lyrica is worth a shot.
  3. Hi all... I’ve been posting my depression journey on this forum; I recently got back my spinal fluid results and while they did find some things that were off (in fact my doc does think these things are causing my depression), they haven’t done enough research to understand the results or suggest treatment. So my pdoc is basically guessing at this point. I was off the charts for inosine, a breakdown product if ATP. There’s very little research but it’s been suggested that it’s a bio marker for people with chronic pain... so my doc suggested taking a pain med to help correct the imbalance, hoping it’ll help my depression. So my pdoc decided to try Gabapentin, which strangely enough I haven’t tried before. I’m titrating up right now, but just curious if anyone has gotten any relief from anxiety and/or depression on Gabapentin? And has anyone also tried Lyrica? Curious how they compare.
  4. Important update... I emailed my pdoc about taking folinic acid preemptively (which is difficult to do in high doses given OTC doses), and he responded with “High dose folinic acid makes non-CFD people worse. Hunter 1970 Lacet.” So in case anybody comes across this post and wants to try it, probably want to find a way to get tested.
  5. Interesting developments regarding my situation. TL;DR- Some results are back, CFD is inconclusive, I have “dozens” of other CNS metabolite abnormalities that they’re looking into; one includes a vitamin C deficiency so pdoc advised trying high dose vit C; discovered that OTC folinic acid is 1/100th the strength I would need so I can’t just try it. And in other news, I have Asperger’s Syndrome(!) and it may even be related to all of this. So... this is bizarre but I very recently discovered I have Asperger’s Syndrome (aka Autism Spectrum Disorder). Wow. What a revelation. It’s unbelievably coincidental that I just happened to research it... and now I’ve discovered that CFD (cerebral folate deficiency) is associated with ASD and according to some studies, the treatment (folinic acid) greatly improves symptoms, of which depression is one. In fact if you google folinic acid, you’ll see a lot of articles linking it to autism, so it seems it’s all related. Meanwhile, I got some results back... and they’re somewhat inconclusive. I’m a bit fuzzy on the details (had a brief phone conversation with my pdoc), but they’re not sure if I have CFD. However, I DO have some kind of vitamin C deficiency in the brain/CNS; I believe my pdoc said I had low oxalate, which is a breakdown product of ascorbic acid (vit C). Significantly low (2.5 standard deviations lower than normal). This is all pretty new research, so he didn’t even know what dose to tell me, but he said if I wanted to, I could try taking a “high” dose of vitamin C to see if it helps. It’s hard to find any info on levels of metabolites in the CNS, but some research I did DOES support taking vitamin Cfor depression... I’ll have to find the studies and link them when I can. Interestingly, there’s quite a bit of evidence suggesting oxidative stress may also be implicated in ASD, and of course vitamin C is a great antioxidant; it’s been suggested as a therapy for autism as well. So I’m gonna try taking 1000 mg/day of plain old ascorbic acid and see what happens! Not sure what I’ll do if after 12 years my depression goes away by taking freakin vitamin C. Despite the inconclusive CFD results, I WOULD simply try taking folinic acid, as I’d be pretty surprised if I don’t have some kind of folate issue. It’s available OTC, buuuut.... it’s generally available in 800 mcg doses... treatment for both autism and depression uses 1 mg/kg, which for me translates to ~70 mg, almost 100x the available dose. It’s available by prescription in 5-25mg doses, but of course that’s off label, sooooo who knows about getting that covered. So as fascinating as this all is, if it pans out, it’s probably a somewhat rare condition; so this may or may not be helpful to anybody but the very treatment resistant. But it does seem like CNS metabolism is an “untapped” area (literally) that deserves more attention. In rereading the original study I linked, it stood out to me that 64% of participants with TRD had CNS metabolic abnormalities while NONE of the healthy controls had any. There have been other metabolites linked to TRD besides folate, so I think if you’ve tried everything and nothing works, finding a way to get this test would be worthwhile.
  6. I’m not 100% sure at this point; that’s just one issue, the other is just disclosing my disability so that I’m covered in the event of disciplinary action, etc.; if you get fired for example, you can’t use ADA after the fact I’m pretty sure... you had to have disclosed ahead of time for protection. As far as accommodations... possibly more frequent breaks; more flexibility with time off or even (if I could afford it) reduced hours. But that was one thing I was curious about: what things others have requested. My workplace is already pretty flexible and easygoing, but it’s a situation where the rules themselves are flexible (the handbook officially says headphones are not allowed, for example, but the actual policy seems to be that its perfectly fine to listen with one earbud in as this is what everyone does openly). That kind of thing makes me nervous because it seems like they could decide to enforce the rule at any time if they wanted to. Same things goes for breaks... the nature of the job involves a lot of downtime, and I think most people take more than their allotted break time. I could just be paranoid and they’ll never crack down. But partially because of my depression I probably don’t have the best work ethic, and I’ve been in similar situations before that didn’t end well. I don’t want to be seen as lazy or a bad worker. I’m not sure if disclosing a disability would help in that aspect or if it would even create more suspicion/stigma; but at least from a legal standpoint I’d be covered.
  7. Has anybody taken advantage of their rights under the ADA at work? I’m reasonably sure that depression can qualify, depending on the situation... just curious if anyone has requested accommodations, what they were and how that went? I’m debating disclosing that I have a disability (I think you can do that without disclosing what it is) if for no other reason than to cover my ass. I’m not always st my best, to say the least, and I’m terrified some dumb mistake could get me in trouble, and if that happens I need to have disclosed ahead of time.
  8. Well after waiting 5 weeks for results(instead of the two I was promised) I got my results... negative for cerebral folate deficiency sigh.... sucks. However, all hope is not lost... they tested my spinal fluid for I think 1000+ metabolites, and I have over a dozen abnormalities. Unfortunately, I have no idea if even the researchers know much beyond that... my pdoc says it’ll take him at least the weekend to parse through all the data from this test. He’s also apparently sending out my sample to another research institution to look into things further. But hopefully I’ll have more “leads” in a week or so after he goes over the data. While it really sucks that I don’t have CFD (that would have been an easy solution), I’m still grateful that somebody is actually trying to get to the bottom of it. I still don’t know how I got so lucky to find this doc but this is how medicine should be practiced; not like all the others who flipped through their flowcharts of medications and gave up or passed me on when they were exhausted.
  9. I don’t know why it takes me so long to try something, but here I am after months of procrastinating... I am finally getting my lumbar puncture tomorrow!!! As is generally the case when you’ve tried and failed dozens of treatments, I’m pretty scared to even think about the results and possibly that’s why I put these things off... if this test comes back negative, I’m probably at another dead end... and I’m getting pretty desperate; my condition was somewhat stabilized for about a year and a half... but the last few months it seems to be getting worse. I need a damn solution to this. Anyway, just wanted to share that and note that I’ll post my results as soon as they come in! My spinal fluid gets shipped off to Texas or something so no idea when I can expect results, but hopefully soon!
  10. I thought I’d share my story, just in case it might help... I smoked cigarettes for years and tried like hell to quit countless times... I tried cold turkey, patches, gum, lozenges, Wellbutrin, Chantix... nothing worked long term. The NRT therapies took the edge off but they weren’t enough. Chantix worked the first time, until I stupidly tried to have “just one” at some point, then got hooked again. The second time I took Chantix (after having a baby, which messed with my biochemistry in more ways than one), I got horrible bear suicidal depression, so I’d say use that with caution. then I tried Nicotrol nasal spray, a prescription nicotine spray. The first time I used it felt like snorting pepper spray... eyes watered up and I couldn’t stop sneezing. But I never picked up another cigarette. The harshness goes away quickly, and I think it worked for me because the usage was so much like cigarettes, and maybe smokeless tobacco to some extent... you simply use it when you feel a craving, rather than a patch that slowly delivers nicotine; you could get a “hit” right when you needed it. one caveat... I got addicted to the spray for 3 years. My doctor said that was fine! He urged me to use it for as long as I wanted to. However my insurance stopped covering beyond an initial 6 month supply, so I was forced to quit. That might have been almost as hard as smoking! Somehow, a combo of willpower and Wellbutrin (and the avoidance of $600/month in meds) deterred me from the spray. Honestly if my insurance still covered it (used to be $12/month, far cheaper than most OTC nicotine replacements), is probably still use it. The nasal spray isn’t well known, and it was so helpful to me that I can’t help but spread the word. It was a godsend when nothing else worked and I simply HAD to quit smoking.
  11. This treatment is Not related to L-methylfolate or the MHTFR genes; and those also correlate with blood/serum levels of folic acid and derivatives... this study is unique because it looks at levels of folic acid in the brain; the subjects in the study had normal serum folate levels, but were deficient in brain folate levels. I asked about the gene because I DO have one of those mutations, but my pdoc says it’s not related to that, at least not directly. I DID however ask him if you could in theory just take the folinic acid without getting tested. And yes, if you could get a doctor to prescribe it, and if you took it diligently for 3-4 months, you could see if it works. I’m pretty sure high doses are needed however and it seems to be only by prescription. Personally, I’d want to know if I had the deficiency. He did say the test is sometimes covered by insurance, at least partially. But I’ve spent 12 years and tried so many treatments, for me $1000 is worth it, considering such a high percentage of TRD patients shared this deficiency. After all, at this point my only other treatment option is IV ketamine, and that’ll cost me a lot more than $1000.
  12. This may be more useful for people like me who have pretty much tried it all and are therefore stuck waiting for new research or for something new to come on the market. On my 24th medication and still struggling, I am most definitely treatment resistant. My pdoc specializes in TRD and keeps current on the research. He works/networks with researchers in various places do he almost always has some cutting edge new treatment to suggest and he didn’t disappoint this time. He told me about a new study that looked at metabolites not just in the blood but also the brain via spinal tap. The study (which only looked at subjects with TRD) found that 70% had a shared metabolic deficiency; they all had cerebral folate deficiency. It should be noted that their serum levels were normal, so a regular blood test would NOT pick up on CFD. Treatment involved folinic (NOT folic) acid; unfortunately, it can take 3-4 months to build up enough folate in the brain... but the trade off is that basically ALL subjects who had the deficiency and underwent treatment for better. It’s a small study of course, but my pdoc thought it was very promising, so he recommended I get the spinal tap to test for the deficiency. The test is sometimes covered by insurance, he thought out of pocket it would be about $1,000. And it does require a spinal tap/lumbar puncture, if that matters. For my part, if I could fix myself for $1000 and a needle in the back, sign me up! Anyway, I’ve always appreciated how my pdoc does so much research into novel treatments, I like to pass on his ideas, particularly for those with doctors willing to try different things. https://www.ncbi.nlm.nih.gov/m/pubmed/27523499/
  13. I did 30 sessions if TMS, unfortunately it didn’t do a damn thing for me, much like the 24 medications I’ve tried. its tolerable, the tapping is annoying but totally manageable. I just watched Netflix. i was supposedly an “ideal candidate” for the procedure, falling into the group my psychiatrist said “usually” improve. I just wish I could get all that time back. my (new) pdoc says I’m not quite to the point of ECT yet, as I’m just barely functional in my misery. But I think I’m finally going to look into IV ketamine, a clinic in my area does trial infusions for about $800... expensive, but worth a shot at this point.
  14. Thanks for the replies, they actually help a lot! interesting question about whether kids make my depression worse. I think so. It’s not only stress, it’s that it’s like having a 24 hour job... really. Imaging actually living Where you work... you might get to sleep occasionally but there’s no leaving, and you’re on call at all times. There’s no going home, no vacations to get away from it all. Its a bit like that... ive often questioned whether I would do it again knowing what I know now; probably not. At least I wouldn’t recommend anyone in my condition having kids. But I know had I chosen not to have kids, I would have always regretted it and dreamed of it, so I would have been unfulfilled in that sense. It really couldn’t have gone any other way. But if anyone else was as bad as I am and was contemplating kids, I’d consider long and hard before plunging in like I did.
  15. Well after 12 years, 24 failed medications and a failed round of TMS, I’ve pretty much given up hope of getting better. But I have two young kids (6 and 3) and now that they’re getting older I need to get this shit under control. It just adds to my depression to think of the psychological damage I’m doing, not to mention whatever genetic tendencies I’ve already blessed them with. Stupidly, I looked up how to help prevent depression, etc. in kids, and it might as well have said “be the perfect parent” and of course, “don’t have depression.” Be affectionate. Spend quality time with your kids. Engage them. Be positive. Build healthy relationships. Teach responsibility. Feed them right. Make sure they exercise, brush their teeth and go to bed on time. Be good role models. Right... Obviously this article assumes the patents in question are neurotypical. And saints. I have depression, so being supermom is out of the question. But I want to minimize the impact on my kids. What’s realistic when you’re an emotional wreck who can’t even feed, clean, and dress herself properly half the time? I do my best, the kids get to school and daycare... they don’t always have their hair brushed, sometimes they’re missing shit I’m supposed to send with them, sometimes their lunch is chips and cookies. I’m pretty crappy at Mom stuff. i pretty much dread spending time with them most of the time... playing is just boring but I feel like most parents are better at faking it, and besides that have moments where they seem to genuinely enjoy their kids. Not all the time of course, but at least sometimes... but I almost never feel that way about my kids, which kills me, and I’m sure they feel it. I’m always irritated and annoyed with them, always yelling. Or I’m in tears apologizing, which isn’t much better. I don’t want them to see me cry all the time. My 3 year old will randomly ask me, “Mommy are you happy or crying?” It tears me up. I guess I’m just wondering how to be nicer to my kids, how I can manage my symptoms better around them, any ideas to minimize the impact on them. I don’t know how to just fake it... the emotions are just too powerful for me sometimes.
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