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Post by delila on Nov 10, 2018 21:37:49 GMT
I am going to take this information to my neurologist at the Mayo & ask her if I can be tested.
I am drug resistant with all my anti seizure meds & that is how I ended up with a VNS implant & a right frontal Lobectomy one year ago. The Lobectomy has made me a completely different person & I’m not sure I like the person I’ve become. I cannot get the section of my brain back, it’s gone so some how I have to learn that this is the person I am now, like myself or not.
I learn so much from being part of the peas, I am thankful to have all you wonderful ladies in my life, thank you.
delila
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Post by scrappintoee on Nov 29, 2018 19:14:05 GMT
@ flute4peace.... How are you doing? Did you start on a new med? delila...I’m so sorry for all you’ve been through; I hope you’ll find a good treatment to help.
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flute4peace
Drama Llama
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Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Nov 29, 2018 22:53:51 GMT
@ flute4peace.... How are you doing? Did you start on a new med? delila ...I’m so sorry for all you’ve been through; I hope you’ll find a good treatment to help. You're so sweet to ask, thank you! I'm so sorry that I didn't come back and respond on this thread. Part of the reason is right in line with the issues I'm having - extreme avoidance, to the point that I've lost my business and should have lost my family were my DH not a complete saint. That appointment and the one following were highly productive. I'll try to give an overview and then respond to some of the posts directly because you were all so very sweet to take the time to respond in such a heartfelt way. I like this New Psychiatrist (NP) much more than the old one (OP). He's the one that interpreted the testing and told me that I was SSRI-resistant - the old one just went over what is and isn't recommended for me, but never really explained why. I had been begging OP for over a year for full psych testing because I always felt like I didn't "fit" into any diagnosis (and he obviously agreed), and that we were missing something. I have physical as well as mental health symptoms. He always said he would order it but never did - until after I had "fired" him - I got a call about a month later from the scheduler hahaha. So at apt #1 with the NP he had listened to my story and immediately referred me for the testing. He wanted it done with a specific doctor at their practice and as soon as possible, and was hesitant to give me an rx until that had been done and we knew exactly what we were dealing with (fair enough). The scheduler called me 2 days later (!!! - not a year haha) and had learned that the testing wouldn't be covered by insurance so would be out of pocket to the tune of $1500. With my daughter's ongoing issues and bills there (long story), I didn't feel like we could afford it so was once again feeling hopeless. After confiding in my parents, they very generously offered to pay for the testing (tears), so I called the scheduler back. With the holidays and testing lab schedule it was going to be quite a wait to get in, and by that time I had completely weaned off of what I had been taking and was feeling very very down/hopeless/irritable etc. I asked if, in light of the scheduling issues, NP would be willing to give me something before we had testing results, and they scheduled me an apt with him for the following week, and also an apt with the Testing Psychologist (TP) for the week after that. That's the apt I was referring to when I made the original post here. So...my daughter is under the care of the same clinic but not NP, but I had told him that she was there and he wanted me to find out what she was taking, since she felt that it was making a difference for her and we are genetically related (I had faxed them my GeneSight results for her when she was admitted). She's actually on 3 meds, one of which I had tried and was a disaster side-effects-wise, and one that is a rescue anxiety med that isn't part of my problem. But the 3rd med she takes is Cymbalta, and it is not an SSRI. He said that would be a good one for me to try and so gave me an rx for it. He said he was glad that I had asked for something since the testing wait was going to be so long. I'm on week 3-ish I think, and side-effects are resolved for the most part. There's never been an "obviously working" result with a psych med for me, but I do feel less hopeless in terms of mood and temperament. My other issues are still there, which is not a surprise. So...the apt with TP was mind-blowing. To be honest I really didn't know what to expect, but it sure wasn't what I got lol. When he first came out to get me I was skeptical - I would describe him as somewhat eccentric - not necessarily in a bad way but certainly not how one would expect a psych doctor to look/dress/act. HOWEVER!! After 5 minutes with the guy I felt like he already knew more about me than any other psych doctor I've ever seen. Instead of just having me tell him what I think is wrong, he started asking me questions, having me do some written things (I felt like I was at Kindergarten screening lol), stuff that was very pointed and intentional. I was like, "Keep asking me stuff, keep asking me stuff!!". The dude is either very, very good, or very, very "good", IYKWIM. He wants me to have a full neuro-psych work-up and we scheduled it for January, so that it would go toward my deductible because he thinks I may end up with further neuro or other testing. He suspects a combination of frontal lobe issues (kept asking me if I had ever had a TBI) and at least one personality disorder (I expected this). He feels like what has been assumed to be "depression" is far more complicated, which is what I've been saying for years!! By the time our hour was over I could hardly breathe. I was trying SO hard not to be excited, because so many times I've gotten my hopes up only to be told there's nothing found or have a med not do anything for me. He did want to meet with me one more time before the testing, which is next week. I asked if I could bring my husband so that he could give a more objective/realistic account of my behavior, and he said he would welcome that. I'm sort of torn, because there are some things my DH doesn't know (the depth of my business troubles and yes I know I need to confide all of that so please don't flame me), so I'm thinking I may meet with TP alone first and then bring DH in. Anyhoo - that's the update. I've spent so many months convincing myself that I'm not worthy of anyone caring about me and I'm really overwhelmed to read your posts and responses. I'm very touched. I just don't know how to handle/process that, apparently, so I completely wall it off and ignore it, hence the lack of coming back to read/respond to the thread. Makes no sense but it makes perfect sense. If that makes sense? So thank you again for caring and responding. I'm going to go back through and make some specific responses so please pardon all the quoting in advance. Love all of you!! Flute
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flute4peace
Drama Llama
Posts: 6,757
Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Nov 29, 2018 22:56:23 GMT
Being told by a psychiatrist that he can't figure you out isn't real good for the self-esteem. that's horrible! No bedside manner there, at all. Also sounds like he needs some extra training, both on how to interact with patients, and for patients with Rx-resistant conditions! Because I can't imagine you're the only one. Yes, it's your issue, but HE'S the medical practitioner; he's supposed to be the one with the expertise. Mine is chronic depression rather than MDD, and I can take Rx, for which I'm extremely grateful. But my current counselor (I'm seeing her for weight / emotional eating issues) is also very big into all the other life factors that can affect your mood-- regular sleep being the #1, not eating too much sugar, not drinking alcohol, coming up with ways to be kind to yourself regularly, etc. IIRC you already eat healthy and take pretty good care of yourself, though... Wellll.....actually I eat like crap. I'm sure there is a nutritional aspect to all of this somehow. When I had the extreme weight loss I was drinking vitamin shakes and taking multivitamins but have slacked off on that. I have had vitamin/mineral labs done, though, and nothing obvious showed up. Still, I know my nutrition stinks.
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flute4peace
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Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Nov 29, 2018 22:59:41 GMT
side note question here.....how did you get genetic testing? Did you request it, or did your DR recommend? It's just a blood test, right? It's called GeneSight Psychotropic testing and I learned about it from a friend and then requested it from a former Psychiatrist.
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flute4peace
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Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Nov 29, 2018 23:01:37 GMT
I believe birukitty had medication resistant depression... I think? hopefully she'll see your post. And good luck with your new doctor! I believe she has an MTHFR gene mutation. Basically that's where you body doesn't process one of the B vitamins correctly (folate IIRC) so you have to take a special form of it that your body can process. It's a long name and I don't remember it. But it is definitely worth looking into while you are having all of your other testing done. DH hasn't had the test, but was prescribed the vitamin and he can tell when he doesn't take it. Now his insurance won't pay for the Rx (Deplin) because you can buy it over the counter, but that's an additional $50 a month for us. Good luck! I've actually looked at this and will try to remember to mention it at my next apt. Some of the physical symptoms seem applicable as well, although nothing showed up as deficient when I had vitamin level labs.
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flute4peace
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Post by flute4peace on Nov 29, 2018 23:04:30 GMT
flute4peace ....How did your appointment go? I hope you’re feeling hopeful that something besides SSRIs will help you! I ALSO know that the WAITING to see if something works can be difficult! ((( hugs!!)) Ugh, when I first started on Zoloft back in May, I was sooo excited to see if it was going to help, but knew it could take 4-6 weeks. I started losing hope, BUT then about 6 weeks into it, I realized I was my old self again! DH heard me singing, and was amazed, saying he hadn’t heard me sing in a long time. 😀 I didn’t even realize how significant the singing was until he pointed it out. RosieKat .....I totallllly remembered you because I had posted / read sooo many posts here about depression when I was feeling totally helpless last year. I think one of the reasons I remember yours & jeremysgirl ’s and other posts from Moms who deal with their children’s and/or their OWN mental health issues is because I cannot imagine the extra pain, stress, etc. of seeing your precious child(ren) suffer! 😰 dewryce ....I’m so sorry that you also battle other issues along with bi-polar! I’m curious if you take anything for the fibro? Also, you mentioned sleep apnea —-I hope you have a good c-pap mahine! We all know that pain AND sleep issues can affect our mental health significantly! I am usually in a LOT of physical pain due to lots of arthritis; HOWEVERRRR, as I’ve been telling everyone lately....I can handle my PHYSICAL pain wayyyy better now that I’m not depressed! 😀 But I also get SOME help (SOMEtimes)from prescription-strentgth Aleve. I’m afraid to take it twice daily (as prescribed) because of the stomach risks. I also take Kratom which helps sometimes, too. OP....I feel like I just highjacked your thread and was about to delete alllll the stuff I mentioned about chronic arthritis pain; however, you may want to research KRATOM and talk to your doc about it for your depression. There are MANY Kratom fans who say they were able to stop RX meds for their depression soley by switching to Kratom. That did NOT work for me when my Lexapro (SSRI) stopped working; BUT I think supplementing with the Kratom compliments / potentiates the Zoloft. Please don't feel like you hijacked! Your information is interesting and helpful and hopefully it can help other readers! Zoloft is, unfortunately, one of the meds on my "won't help" list. Wish I'd known that when I was taking it for 6 or so years and thinking I was crazy.
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flute4peace
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Post by flute4peace on Nov 29, 2018 23:09:53 GMT
We've used GeneSight and it's been a great help on determining meds for my daughter. I pretty much credit having it done with probably saving her life. I've not had it done, but I do have treatment-resistant depression. What finally worked for me was buspirone, an older, non-SSRI one. I also have some genetic mutations that aren't MTHFR but related to that cycle and need to take certain forms of B12 and folate. (This was determined via other methods, not GeneSight. Both were simply spit tests.) Just because most of the newer antidepressants are SSRIs does not mean there aren't plenty of other options. I'm happy to either PM or answer other questions here, I'm just kind of tired right now! This is interesting. I'm going to ask about the further testing. I'm definitely interested in pursuing that. Thank you for mentioning it! The Buspirone is on my list of "may not work" meds, unfortunately.
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flute4peace
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Post by flute4peace on Nov 29, 2018 23:13:49 GMT
My doctor quit prescribing anti-depressants for me a long time ago. He said, "nothing seems to help, and you've been like this since I have known you". To be honest, I don't have a chronic, can't-get-out-of-bed in the morning depression. I just have depression. I mean, it's part of my being, I guess. I am doing better than I used to. I just won't try meds for it, since I don't have issues functioning. I know that I'm very fortunate. I will say that I don't always have motivation to do the things that I want to do, and I hate that. I do know that I can't immerse myself in tragic stories, or other people's pain. I have a hard time not taking on other's pain. So, I limit what I will read after tragedies and such. I have to protect myself, even if that is selfish. Lack of motivation and apathy are my BIG issues. It's like I missing whatever that "thing" is that makes you want to get up off the couch and do the simple tasks of everyday life. All of the normal-people motivating factors don't phase me. But I can be perfectly happy, have fun, laugh etc. I'm not mood depressed. I just can't function.
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Post by delila on Nov 30, 2018 18:14:47 GMT
that's horrible! No bedside manner there, at all. Also sounds like he needs some extra training, both on how to interact with patients, and for patients with Rx-resistant conditions! Because I can't imagine you're the only one. Yes, it's your issue, but HE'S the medical practitioner; he's supposed to be the one with the expertise. Mine is chronic depression rather than MDD, and I can take Rx, for which I'm extremely grateful. But my current counselor (I'm seeing her for weight / emotional eating issues) is also very big into all the other life factors that can affect your mood-- regular sleep being the #1, not eating too much sugar, not drinking alcohol, coming up with ways to be kind to yourself regularly, etc. IIRC you already eat healthy and take pretty good care of yourself, though... Wellll.....actually I eat like crap. I'm sure there is a nutritional aspect to all of this somehow. When I had the extreme weight loss I was drinking vitamin shakes and taking multivitamins but have slacked off on that. I have had vitamin/mineral labs done, though, and nothing obvious showed up. Still, I know my nutrition stinks. Flute4peace, I too am not a good eater at all. I tell my drs that I eat like a 12 year old boy, nothing but junk food!!! Recently a friend told me about 8Greens, Ive been drinking that instead of my regular protein shakes all day and I feel a bit better. I don't have leg cramps at night so its worth that alone! I drink 8Greens 2 times a day, it isn't going to hurt me my drs tell me so I will stay with it. I like the taste of it, its a bit like Alka-Seltzer but I don't mind that taste. The trick is to have very, very cold water. I would give a link here but I don't know how, sorry ladies. delila
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RosieKat
Drama Llama
PeaJect #12
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Jun 25, 2014 19:28:04 GMT
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Post by RosieKat on Nov 30, 2018 18:15:16 GMT
I'm not mood depressed. I just can't function. I know that feeling. NP and TP sound like maybe they're helping you get on the right road. Don't beat yourself up over the business stuff, etc. What's done is done, and the important things are that you're hopefully finally getting the help you need to be you. I'm not saying there won't be possible repercussions and unpleasant conversations and all of that - just that dwelling in the bad things won't help, and you're actively trying to make positive progress. It's so hard, and often so discouraging. We're here for you! (((hugs)))
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Post by crimsoncat05 on Nov 30, 2018 18:24:21 GMT
I've spent so many months convincing myself that I'm not worthy of anyone caring about me and I'm really overwhelmed to read your posts and responses. I'm very touched. I just don't know how to handle/process that, apparently, so I completely wall it off and ignore it, hence the lack of coming back to read/respond to the thread. Makes no sense but it makes perfect sense. If that makes sense? So thank you again for caring and responding. it TOTALLY makes sense!
I'm glad you've had a good experience so far, and hopefully your new Drs can keep working to find something that helps you out even more.
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Post by jeremysgirl on Nov 30, 2018 18:42:49 GMT
I am glad to see the optimism in your post. It is true that genetically linked people often do well on the same meds. My DD and my DS are both on meds that have worked successfully for me in the past. And I'm so glad your parents are going to help you with the cost of the test. I hope to hear another update soon. ETA: I've had some really weird psychiatrists in my day too. I can't imagine the personality type that actually wants to work with us weirdos!
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Post by birukitty on Nov 30, 2018 22:46:54 GMT
Flute4peace I'm so happy to read your encouraging update. Finding the right doctor makes a HUGE difference! And to me that means finding one that listens to you and respects what you are saying. They are few and far between. Please know that you are worth everything! We care about you and are here to help you. If you don't feel like talking it's okay. We understand. We'll be here when you are ready.
What I have is a MTHFR genetic mutation. It means I can't process B12 from regular sources-from vitamins or injections. My blood work never showed a B12 problem but I had it for years and because of this it led to what was diagnosed as medication resistant depression that lasted 10 years. At the end the doctors were so desperate they talked me into electric shock therapy. I warn everyone now not to ever do this-it took away 1/2 of my long term memories and still effects my short term memories to this day. It wasn't until my amazing Integrative Medicine doctor found out about this and gave me a blood test for MTHFR that we realized I had MTHFR. Once I started taking the right form of B12 my depression vanished and hasn't come back-this was 8 years ago. So whenever one of the peas mentions having depression that isn't being helped by regular anti-depressants I bring this up just in case I can help them and remind everyone to get this blood test. My grandmother had it and my sister also has it. For me when I had this depression I was never sad or weepy. I was catatonic-I closed myself up within myself and didn't care about the outside world. I am so grateful every day that this is over now and am grateful to my wonderful doctor who diagnosed it and fixed it.
From what you are now saying it sounds like what you have is more in your frontal lobe. Just throwing this out here but ADD is something that manifests in the frontal lobe too. Women can have ADD and our symptoms are very different from men with ADD. My sister who has had it since childhood has been pushing me to get tested because she thinks for sure I have what is called Initiative ADD. I have the hardest time with procrastination. I have a lot of symptoms of Initiative ADD and am planning to get tested for it after Christmas. Maybe part of what you have might be this too? I live in Annapolis, MD which is an expensive area and around here testing for this is around $200.00. It's not covered by insurance either, but if it can help me in my everyday life I'm going to do it. Just thought I'd mention it in case this might be a little part of what might be going on with you too.
Anyway, I'm so happy for you that you're going to be able to get all of the testing done that you need and that in the meantime you've found a medication to take that isn't an SSRI. I wish for you continued healing. Again, please know that we are here for you. I'm sending you big, big HUGS.
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flute4peace
Drama Llama
Posts: 6,757
Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Dec 1, 2018 6:55:51 GMT
Flute4peace I'm so happy to read your encouraging update. Finding the right doctor makes a HUGE difference! And to me that means finding one that listens to you and respects what you are saying. They are few and far between. Please know that you are worth everything! We care about you and are here to help you. If you don't feel like talking it's okay. We understand. We'll be here when you are ready. What I have is a MTHFR genetic mutation. It means I can't process B12 from regular sources-from vitamins or injections. My blood work never showed a B12 problem but I had it for years and because of this it led to what was diagnosed as medication resistant depression that lasted 10 years. At the end the doctors were so desperate they talked me into electric shock therapy. I warn everyone now not to ever do this-it took away 1/2 of my long term memories and still effects my short term memories to this day. It wasn't until my amazing Integrative Medicine doctor found out about this and gave me a blood test for MTHFR that we realized I had MTHFR. Once I started taking the right form of B12 my depression vanished and hasn't come back-this was 8 years ago. So whenever one of the peas mentions having depression that isn't being helped by regular anti-depressants I bring this up just in case I can help them and remind everyone to get this blood test. My grandmother had it and my sister also has it. For me when I had this depression I was never sad or weepy. I was catatonic-I closed myself up within myself and didn't care about the outside world. I am so grateful every day that this is over now and am grateful to my wonderful doctor who diagnosed it and fixed it. From what you are now saying it sounds like what you have is more in your frontal lobe. Just throwing this out here but ADD is something that manifests in the frontal lobe too. Women can have ADD and our symptoms are very different from men with ADD. My sister who has had it since childhood has been pushing me to get tested because she thinks for sure I have what is called Initiative ADD. I have the hardest time with procrastination. I have a lot of symptoms of Initiative ADD and am planning to get tested for it after Christmas. Maybe part of what you have might be this too? I live in Annapolis, MD which is an expensive area and around here testing for this is around $200.00. It's not covered by insurance either, but if it can help me in my everyday life I'm going to do it. Just thought I'd mention it in case this might be a little part of what might be going on with you too. Anyway, I'm so happy for you that you're going to be able to get all of the testing done that you need and that in the meantime you've found a medication to take that isn't an SSRI. I wish for you continued healing. Again, please know that we are here for you. I'm sending you big, big HUGS. Thank you so much for your information! I’m definitely going to mention the MTHFR. Severe ADD is something that’s very much on the radar, but the testing dr wasn’t convinced. My daughter is gifted (well both of them are “officially “ but one more than the other) and many time some of those characteristics can mimic ADD. It will be included in my January testing. Thank you all again for caring. I had a horrible awful day today and actually cried tonight.
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Post by scrappintoee on Dec 3, 2018 23:30:09 GMT
flute4peace.... I read your update and I am SO glad you saw that new doc; he sounds great! On a silly/ totally joking note: pleeeeeze get a pik of him & post it for us so we can realllly see what you mean about how he doesn’t have a “typical” look of a psychiatrist ....hee hee! I’m also sooo glad you’ll be getting the test in January. delila.... As you said upthread, I hope you can also have that testing done, too! I literally thank God every day ( and some days, MORE than once!) for Zoloft! This time last year, I was COMPLETELY hopeless. I pray everyone gets the relief I have !!!!! (( hugs ))
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Post by scrappintoee on Feb 13, 2019 23:57:41 GMT
OP and others who responded---If you feel like sharing, how are you doing these days? Back when this thread was started, I mentioned my friend's dear aunt who has severe depression, and was contemplating suicide. For many years, Prozac helped her, but not anymore. Sometime last Fall, her doctor started giving her Ketamine infusions. My friend says the Ketamine HAS helped her aunt, but she doesn't know HOW much it's helped, since she hasn't seen her in quite a while. I just saw now on the news that Ketamine will soon be approved by the FDA for depression. It will be in a nasal spray and given in a doctor's office, and most insurances should cover it. They showed some studies that said some people felt better within FOUR HOURS! A woman who was suicidal said it's helped her a lot. I hope and pray this helps people !!!!!!! (( Hugs )) to anyone suffering depression !!! I have been there, and I KNOW how horrible it can be! Thank God, since my doc switched me to Zoloft last May, the extremely painful "black clouds" (what I call it ) that followed me are GONE! I still CANNOT believe how difficult it was for me to do the easiest things !!!!! I wish/ pray everyone who is suffering can find the right treatment!
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RosieKat
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Jun 25, 2014 19:28:04 GMT
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Post by RosieKat on Feb 14, 2019 0:21:34 GMT
<deleted due to brain fart>
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Post by Delta Dawn on Feb 14, 2019 0:48:16 GMT
I have treatment resistant depression. I talked to my GP and she is finding me a new doctor. I take a cocktail of drugs but take SNRI Pristiq and Wellbutrin and Risperdone. This is the only combination that works.
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melissa
Pearl Clutcher
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Jun 25, 2014 20:45:00 GMT
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Post by melissa on Feb 14, 2019 2:11:25 GMT
SSRIs are not the only class of antidepressants. There are also MAOs and tricyclics (I might have that term wrong, it's been a while and I am drinking a little to handle the turbulence on this flight!)
While SSRIs have many advantages, if they do not work, there are still a decent number of meds to try.
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flute4peace
Drama Llama
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Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Feb 14, 2019 2:34:59 GMT
It’s so interesting that this thread was bumped tonight, because I have an update!!! It may be a while before I can het it all typed up the way I want but will leave a link here when i do.
I hope everyone else on the thread is doing well.
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