Hating this illness right now

[FatherTryingToHelp]

So, where were we? Cosy by the fire, no wait, that's not me...

Since I last posted, it got a bit better, then a bit worse, then we ran into the fun of multiple doctors, my wife at this point had 3 pdocs due to trust issues caused by the first, of course at some point they had to start disagreeing about what the course of treatment should be.

This caused a fairly major bout of anxiety, and general "ahh, where should I go, what should I do" finally came through the end of that *phew* and then we went to the neurologist, who flat out said mental disorders don't exist, post-partum psychosis, bipolar, none of them are real, and my wife should get off the meds she is on as quickly as possible.

Of course, he didn't have any real game plan, but this reinforced what my wife had already been (to a lesser extent) thinking of, and allowed her worry of side effects to magnify in and well, now she's trying to reduce off her medication and "cope", I've said I don't think it's a great idea, but beyond tying her down and forcing the medication into her, not sure there is much I can do. I hope she's right, I really do, I fear (terribly) that she is wrong, and this is going to blow up seriously in her face, but, well one way or another I guess we'll find out..

Stay tuned for the next exciting episode of "OMG THIS IS MY LIFE?"

[mom0810]

THAT NEUROLOGIST SHOULD BE SUED.

Had to get that off my chest. What an irresponsible thing for him to say/do. How awful. That is truly unbelievable.

Her fear of the meds is part of her disorder. Anxiety/depression/OCD/PTSD... all of them will cause her to fear the meds and doubt the course of treatment. She has never stayed on anything long enough to make any change. She keeps switching doctors and trying to get the answer she wants... which she obviously got from the quack neurologist.

I still feel that you should have her committed to a psych hospital where she can have 24 hour care for a few days-weeks. she needs to get her meds sorted out, she needs to have someone see the things that YOU see at home.. she needs help.

If she continues to resist treatment, then you are going to have to make some choices. I'm sorry but you will.

You have never said what is happening with her therapy? Is she still seeing a therapist? What happened to Shoshanna?

If she wants to try a more holistic way of going (which I don't advise because every time you all reduce her meds, she backslides BIG time), but if she wants to, there are naturopaths that MIGHT be able to help, if you live in a state that allows them.

[Autumn Breeze]

That Neuro is HORRIBLE. I can tell you from personal experience that BIPOLAR IS VERY REAL!!!

I have been unmedicated for roughly 5 months, the summer was great. But now I need to start medicating again, it's just my natural shift in brain chemicals and it's messed up again. So I go back to the meds to fix it. Right now I can function so it's not that bad. But it can be, and I refuse to let it get that. way.

She needs a hospital. Pronto. The good one. Find a way. Call her family and tell them she needs their help, their support. This is a very REAL thing happening to her and she can't think her way out of it.

I take 150 mgs of Lamictal, roughtly 2400 mgs of fish oils, a Super B Vitamin Complex (6, and 12 are the ones that make a difference to me, but the Super B also had folic acid).

I take folic acid as well because some of these medications will rob our bodies of other vitamins and minerals we need on a daily basis. Fire the Neuro, go back to the therapist and KEEP GOING BACK. Drive her, walk in with her, and then let her talk.

I can completely understand wanting to do this 'naturally' and hope she's just going to magically get better. But let me tell you it doesn't always work that way.

You can't just walk out of the hole you need tools to help you climb. Once you climb back to level ground you can try other remedies to help maintain the progress that has been made.

You should also look into some therapy FOR YOU, show her it's not that horrible to go talk to someone and get help.

[ShineliketheSon]

I second the nuero is wrong...myself,my sister, my mom all suffer/suffered some form of depression. All real. It took EST to pull my sister out of her suicidal depression, after 2 years of in and out of hospital. It is REAL! She needs meds as does my mom, I need therapy. Everyone is different but some people need meds! Get another nuero!

[FatherTryingToHelp]

Hey, back again,

So, I do believe the Neuro is wrong, and fortunately, she tried going down, felt horrid and decided that no matter how much she wanted to do it, she couldn't.

Still not sure how to get her in Hospital, seems like the only way they'll take her is if she's suicidal, and she isn't (although actually does seem a little more tending that way today) she's back up on the meds, in fact higher than before, although still massively resistant, and obsessing over the side effects.

The big thing STILL seems to be the shaky feeling that wakes her in the morning, and no-one has had a good answer for what that might be, she firmly believes it's not anxiety, and taking anti-anxiety drugs hasn't helped it, so I tend to agree. I'm still pretty clueless, but I'm out of the house at work now, and part of me wonders each night what I'm going to come home to.

I don't know how to have her go someplace where it isn't a 24/7 lockdown, it seems to be all or nothing...

The therapy (still seeing Shoshana), no clue, I don't honestly know what it's supposed to do, so really, I can't tell if it's working or not, it seems to make her feel somewhat better talking about it, but I just don't know how much it's actually helping, when she feels somewhat okay she seems like she can do stuff, but when it gets a bit bad she just falls apart.

[Autumn Breeze]

The fact that she tried to go down and realized it wasn't ok is a good sign!

As for getting her into the hospital, talk to her about it. Discuss the benefits! It wouldn't have to be a long term stay, but if she goes there are people there to witness and observe the side effects or possible side effects of the medications. They can also make the changes necessary to hopefully erase the odd side effects.

If she agrees that the hospital stay sounds like it might be a good idea, then you guys go together and discuss it with both her therapist and her psychiatrist. You can ask the psychiatrist to admit her to the hospital for a period of time for med adjustments.

Heck you can set it for 2 weeks and then re-evaluate. If she's not feeling well enough on the meds maybe she can stay another 2 weeks.

when she feels somewhat okay she seems like she can do stuff, but when it gets a bit bad she just falls apart.

And that's part of a mental illness. There are things that she can't handle. There are things that after 2 years on medication I still couldn't deal with, unless I asked for help. She has a ways to go and that is OK!!!!

It's very disorienting to be feeling good one minute and then suddenly you can't breath, your heart is pounding, your head is racing, which makes you dizzy. Now throw in a couple intrusive and ugly thoughts that you have no control over. It would make most people I know cower in fear and cry. The fact that she tries again is GOOD. Keep up with the encouragement, and support. But don't.stop.talking.

[mom0810]

Great to get an update, I know myself and a lot of other moms are concerned about her. And you, of course.

It's good that she is staying on the meds. It's good that she saw she can't go down. It's VERY good she's still in therapy.

I think part of this process is accepting that she's ill. I don't think she has done that yet. The fact that she doesn't recognize the physical stuff she's feeling in the morning as anxiety tells me that she has not accepted that she's ill. Anxiety manifests in exactly the way you are describing, and until she gets relief from that (usually with meds, but therapy works over TIME), she won't have the perspective to know that it IS physical and it IS anxiety. That's how it works.

Have either of you done any reading? Shoshanna's books are great, so is Daniel Amen. Anything you can read that you see yourselves in and realize that you are not alone and this is the normal progression of this illness and that she WILL heal, will help. Maybe some of the other moms have some reading they can recommend, too. I know those books helped me, though.

I find it odd that she hasn't talked with you more about her therapy. Maybe it's just me, but I talked with my husband about everything I did in therapy, because my homework was things that I would have to change at home, and things would be different and he needed to know why.
Communication is huge with this or any illness. It seems to me that sometimes you are feeling isolated in this whole situation, and that could be that she doesn't feel safe enough to let you in, which could be part of the illness, in which case you will just have to wait until the meds can do their work. How long has she been on the CONSISTENT higher dose? That makes a difference. It can take 6-8 weeks on a higher dose for her to feel better.

Consistency and perseverance, and I think you will start to see some good changes.

[FatherTryingToHelp]

Trying to answer all the Q's, but maybe I'll miss some.

I don't honestly know what she does in the therapy, I'm not even sure if real therapy has started yet (and I know she has told me that Dr Bennett has expressed some concern that she is paying for this, but not really doing therapy). I know we did change up some stuff in the early days, but doesn't seem to be so much now, I always ask her how it went, if there is anything, but never seems to be much.

The last week has been worse for her, simply because I actually started my new job, and so am not home all day (like I had been for almost two months) so not there to offer comfort, or try to convince her that it's going to be okay, I feel guilty some, but we need income, and right now I have a feeling she'll be laid off once the 12 weeks allowed for medical leave are up (and I don't think she'll be back at work before then, although she did express desire to end up working again once she's better).

With regard to hospitalization, currently she's going in for an evaluation on Tuesday for what they call partial hospitalization, I'm not sure it's what she needs, I wonder if full hospitalization is what she really needs, but after going to the state run, "free" place, she just doesn't want to even do it, feels like she'll be locked in, put on suicide watch, not allowed to do anything, in a place full of (what she calls) crazy people, so we'll start with Partial, I'm hoping that if she's at that maybe they will notice and tell her if they feel she needs full hospitalization.

With regard to symptoms, I still don't know if this weird shaky feeling that she gets pretty much every morning is really anxiety, I wish I could be sure, but the fact that it started so suddenly, and seems to show no signs of abating, makes me wonder if it's some lingering side effect of the paxil, or something equally horrific, my worst fear is that it's something that's just going to stay with her, because honestly, if this doesn't get better soon, I think she's going to be dead by christmas.

I did reach out to both her pdoc and therapist on Friday, but suggestions for how to handle this or where to go seem to be in pretty short supply, we just keep muddling along, and hoping that it'll get better soon, for dosing she's upto 300mg of Seroquel (as of last night) working up by 25 each day, I still wake each morning thinking "maybe this will be the day that the right dose is there and the shaking stops". She's off pretty much everything else (has tried taking Clonopin at night, but so far it doesn't seem to have done squat to help the shaky feeling).

If you can't tell, the shaky feeling is the BIG THING right now, I think if that would go away we may at least have a chance of dealing with any other stuff, although having said that I know my wife's obsession with different things has switched as time has gone, it was on Sleep for the longest time, then switched to this shaky feeling when it started happening, when it seemed to get a fraction better (and it really was only a fraction better) it switched to the med's potential side effects, now it's back to the shaky feeling, if that went away tomorrow I have a feeling it would go back to the meds, or side effects, or whether she has been misdiagnosed and is being treated for something she doesn't really have or... But, without the shaky feeling I really do feel her depression would lift some and maybe give us a chance of dealing.

Anyway, we'll be at 325 tonight, I know the doc when I talked to him seemed to be thinking that 5, maybe 6 hundred might be about the right dose, so we'll see, thats what, 8 days away, so mid-october here we come.

In brighter news, the little one has a fever (not really a bad thing), because two more molars coming in, so now he'll have 4 molars to really try to demolish food... must be weird having two molars only, must make you eat all your food on one side of your mouth.

[FatherTryingToHelp]

Originally Posted by Autumn Breeze

And that's part of a mental illness. There are things that she can't handle. There are things that after 2 years on medication I still couldn't deal with, unless I asked for help. She has a ways to go and that is OK!!!!

It's very disorienting to be feeling good one minute and then suddenly you can't breath, your heart is pounding, your head is racing, which makes you dizzy. Now throw in a couple intrusive and ugly thoughts that you have no control over. It would make most people I know cower in fear and cry. The fact that she tries again is GOOD. Keep up with the encouragement, and support. But don't.stop.talking.

The problem is, I'm not sure it's any of that, it doesn't seem to be "things" it's days, it just seems to be random, sometimes she can, sometimes she can't, no rhyme or reason to it, just is. Never seems to have heart pounding, can't breath (not since, maybe early/mid august) just seems to be constant depression about this shaky feeling right now, and an absolute blind certainty that she isn't going to get better. I keep working on the encouragement and telling her it is going to get better thing, but not much so far.

I think someone asked about family, the short answer is, her family really can't help, they don't seem to believe in mental illness, or want to ignore it, I think it's just part of there culture. Mostly her mums advice is "you just need to get up and do things, stop being such a lazy whiner", it's not quite that bad, but that's sort of the basic idea.

[mom0810]

Father wrote:
With regard to symptoms, I still don't know if this weird shaky feeling that she gets pretty much every morning is really anxiety, I wish I could be sure, but the fact that it started so suddenly, and seems to show no signs of abating, makes me wonder if it's some lingering side effect of the paxil, or something equally horrific, my worst fear is that it's something that's just going to stay with her, because honestly, if this doesn't get better soon, I think she's going to be dead by christmas.
It IS anxiety, I can tell you with 100% certainty. When you have anxiety, the feeling comes on all of a sudden, involuntarily, and now that she is expecting it every morning, she could actually be bringing it on. Anxiety doesn't have to come because of anything. It just comes on, it's a physical sensation that just comes, and then you get yourself all worried wondering what it is.


I did reach out to both her pdoc and therapist on Friday, but suggestions for how to handle this or where to go seem to be in pretty short supply, we just keep muddling along, and hoping that it'll get better soon, for dosing she's upto 300mg of Seroquel (as of last night) working up by 25 each day, I still wake each morning thinking "maybe this will be the day that the right dose is there and the shaking stops". She's off pretty much everything else (has tried taking Clonopin at night, but so far it doesn't seem to have done squat to help the shaky feeling).
She should maybe take the Klonopin immediately upon waking, it will stop the shaky feeling. I really don't think it's anything to do with any of the other meds. I think that you are right, she is hyperfocusing on the shaky thing and that in and of itself is making the shaky feeling worse, if not causing it altogether.


If you can't tell, the shaky feeling is the BIG THING right now, I think if that would go away we may at least have a chance of dealing with any other stuff, although having said that I know my wife's obsession with different things has switched as time has gone, it was on Sleep for the longest time, then switched to this shaky feeling when it started happening, when it seemed to get a fraction better (and it really was only a fraction better) it switched to the med's potential side effects, now it's back to the shaky feeling, if that went away tomorrow I have a feeling it would go back to the meds, or side effects, or whether she has been misdiagnosed and is being treated for something she doesn't really have or... But, without the shaky feeling I really do feel her depression would lift some and maybe give us a chance of dealing.
What you describe above is very typical of the progression of anxiety and depression. The patient gets hyperfocused on one thing, then another, and thinks, "if I could just get this one thing to go away, then..." It's not true. You are deluding your self, too, into thinking that if the shaky feeling would just go away, she would be fine. She wouldn't. Unless and until she starts actually working the therapy and opening herself up to the help, even if the shaky feeling thing went away, she would obsess over something else.


Anyway, we'll be at 325 tonight, I know the doc when I talked to him seemed to be thinking that 5, maybe 6 hundred might be about the right dose, so we'll see, thats what, 8 days away, so mid-october here we come.

Can she go up on the meds any faster than that? WILL she? I know she is resistant to any medication, but it seems like such a slow crawl when she is already suffering so much. Just my thoughts...I really wish she would take something for the anxiety. Once her physical symptoms go away, I think she can start working on other things... BUT.. she has to want to and she has to believe her diagnosis or she is just going to be swimming against the current.
In brighter news, the little one has a fever (not really a bad thing), because two more molars coming in, so now he'll have 4 molars to really try to demolish food... must be weird having two molars only, must make you eat all your food on one side of your mouth.

[lisasaurus]

i had a small thought to add to everyone elses ideas, is she eating much? i know when my anxiety was/is bad, i can't eat much. but a good dose of protein really helps me feel more normal. i just wonder if the shaky upon waking has anything to do with a lack of nutrition/blood sugar first thing in the morning? when i was "in the thick of it" i would try to eat a hard boiled egg or some cheese right before bed.

anyway, just an idea to help with that specific symptom. I agree that at this point, she just needs to focus on something, so if the shaking goes, it will be something else. until all the other treatments are working, i think thats how its gonna be. sounds exactly like how i was too.

[mom0810]

I hope it helps you to see that we all recognize the patterns of this illness. What your wife is going through is so familiar to us, and I hope it makes you feel better to know that we all see the pattern of what happened to us, and that it's not just some strange thing that only you and she are going through. What is happening with her is very typical, very much what happens in the course of mental illness and getting treatment for it. What I can also tell you is that the sooner she accepts that her condition is, indeed, medical, the sooner she will be able to accept the treatment and start to get better.

[FatherTryingToHelp]

mom0810, it really does help, especially since none of the doctors have seemed to indicate that anything is "typical".

Right now it's a massive struggle, while the last two mornings have been better, the last two evenings have sucked royally, after taking her meds around 9:30, around 10:30 she is very drowsy but has feelings of bugs under her skin, or internal tremors, or shaking or... just wants to shake it out, seems to be really disconcerting, tonight she was actually pounding her chest saying she wants to die and stab herself with a knife like this, and then by 10:45 it had all subsided and she was fine again, just very drowsy.

I think tomorrow I'm going to try to get her into the hospital, see if they can do something, although I have no idea about getting her in possibly outside of her will, because I'm not sure she'll want to go, she views mental hospitals as places similar to the one depicted in "One flew over the cookoo's nest" and unfortunately the one time we went, that image was reinforced, I'm hoping to get her in someplace else, but have to try to deal with the damn insurance.

In regard to protien, she does eat nuts in the late evening before bed to try to resolve that one, doesn't seem to help at all, but yes.

[tappinerp]

I haven't posted in this forum for a while, but I do remember you and believe that I posted in one of your other threads.

I also wanted to support that the "shaking" and feeling of "bugs under her skin" are in fact anxiety. When I am having an episode, that is exactly how I feel. I don't have the racing heart or shortness of breath or feelings of dying. What I have is an inability to stop shaking or jumping. I tell people it feels like I have jumping beans inside of me and I literally cannot sit still and I cannot get my brain to slow down. Everything seems so out of my control that I too have threatend suicide just to MAKE IT STOP. At times, Klonopin has been my lifesaver. For me, it is very effective in ease the symptoms.

In the meantime, hang in there, and continue to supportively, lovingly, but firmly insist that she gets the help that she needs. She doesn't have the ability to rationally make those types of decisions right now. It sucks to say it, and it sucks to be in that situation, but it is what it is. Someday, she will realize it and thank you. It does sound like she is making some progress, but she needs more.

[yogachick79]

Okay, trying to read past posts and catch up before commenting. So if I miss anything or have gotten anything wrong, please let me know. Basically I agree with what everyone is saying here about hospitalization and the process of denial. Keep working on full admission to a hospital, but partial may be better than nothing.

The second thing that stuck out to me majorly was that she may be/is BP II and on Paxil? Paxil can be a huge no no for BP people, sending them in to hypermanic and/or mixed states which can be full of anxiety, paranoia and an overabundance of energy. I was mistakenly put on Paxil in my mid teens (BP dx came for me at age 12) because I was just labeled by that particular doc as depressed, and it made me absolutely nuts. I saw things, I heard things, I didn't sleep for days on end. This is just something that I wanted to point out because it definitely could aggitate her if she really is BP.

I will keep reading, and send many healing vibes to both you and your wife.

[FatherTryingToHelp]

Thanks for the support and kind words from everyone.

As of last night things changed a bit, in that we managed to get her voluntarily admited to a hospital in the area, seemed to be a MUCH better place than the last travesty that we went through when going to the ER, they only accept voluntary patients, and only those that are "non-violent" (I assume they mean to others, since while she hasn't ever done anything to herself, there has definitely been some suicidal tendencies).

The paxil (to update) was only there for a couple of weeks, I know my wife did a ton of internet research and found ALL SORTS of crazy things that people report having after coming off paxil, sometimes months, even years after stopping taking paxil these symptoms continue (which, when she isn't saying she broke her body/nervous system by pumping for 6 months, she thinks she got and paxil permentantly damaged her).

So we definitely AREN'T on the paxil anymore, nominally she's just on the Seroquel (with "as needed" Klonopin and Ambien, although a doctors definition of "as needed" and my wife's vastly differ, she was amazed at the dose of Ativan they gave her when being admitted (2mg, vs the .5mg that she VERY OCCASIONALY deins to take).

Anyway, I'm hoping that a few days (or weeks) in the hospital might allow others to see what she's going through and figure some sort of solution.

[Autumn Breeze]

I was always reluctant to to take my ativan. I was also prescribed the .5 mgs, and once I finally conceded to taking it when I needed it, I was amazed at how NICELY it helped me. It didn't knock me down, or wear me out if I truly needed it. If I didn't need it BADLY, it made me a little sleepy, but again, it wouldn't knock me out.


I'm glad to hear she has been admitted, I hope that this improves her quality of life!

[yogachick79]

Yea for getting in to the hospital, that is wonderful and I hope that they are able to see exactly what is going on and help work through it. I'm so glad that she is not on the Paxil any more but sorry that she scared herself through the internet research. I had no longstanding issues thankfully, they stopped almost as soon as the medication was out of my system.

Again, hoping that this really helps get things in to perspective for her and that she feels so much better. It may be that being in the hospital, getting on a good dose of medication and seeing how good she can really feel when balanced is all it takes to get her to comply with a better med reg.

[FatherTryingToHelp]

Originally Posted by Autumn Breeze

I was always reluctant to to take my ativan.

To give a quick "the way she thinks", the first time she took it she was expecting to have almost LSD like effects, expecting to have crazy colours, and weird psychotropic effects when she took it.

At the hospital they didn't give her the Seroquel last night, talking to her this morning she was amazed that she wasn't bent over in severe pain, sweating buckets and going through what you normally see on TV as withdrawal from really hardcore drugs.

[mom0810]

Hi there,

Glad to hear you've made some progress.

Her symptoms sound like pretty classic anxiety and OCD. Looking up all that stuff on Paxil and convincing herself that all of those things were going to happen to her, that's totally classic OCD, which is an anxiety disorder. Also, thinking that she was going to be in complete withdrawal after going off the Seroquel for one night... classic. Everything you post, although it seems like you guys are the only ones going through it, is classic for an anxiety disorder and depression. I am beginning to question the bipolar dx, but I am not a pdoc. It sounds like she has pretty classic OCD and perhaps PTSD following her childbirth. You didn't post much about what that was like. Was it traumatic? Did your child require hospitalization after birth? Those two things can lead to PTSD.

Well, I am so glad she is in hospital and you have a little bit of relief now. Please keep us posted on what is happening.