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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by g_g_g_unit on June 11, 2016, at 13:23:55
Seriously, I have been posting here -- on and off -- for a long time. During that time, I've tried a lot of meds to get my ADHD, OCD and depression under control but was never successful. A lot of it just seemed to be bad luck: things that should have at least given me some relief statistically, such as benzos or Memantine, just provoked paradoxical anxiety.
I always held out hope, despite very difficult circumstances; my family relocated me to a new country where I had no job, no friends, where I haven't been able to access any kind of disability or social services. What's worse, we moved into a very small, noisy house which has been consistently overstimulating (my focus is bad enough with all three disorders .. plus the anergia makes it hard to go out). The claustrophobia was never something I was able to deal with, and which caused me so much distress. Regardless, they were emotionally abusive over that time and basically paid little attention to the situation they'd put me in.
I've watched my health (physical, mental) deteriorate a lot over those 6 years (and I'm only 30); lacking access to disability has made it impossible to move out. However, things got really bad a year ago when I experienced a kind of 'crash'. The initial symptoms were constant low blood sugar and fatigue. But they worsened over time and included tinnitus, weight gain, vertigo, low blood pressure, peeling skin, temperature intolerance, my facial hair growth slowed down etc. Over time, I've also developed ataxia (I feel off-balance all the time and can't walk around places anymore because I've fallen). What's more, the most minor stress/exertion (walking around the block, a hot bath) will 'crash' me and make me weaker, more hypoglycemic, worsen my balance/dizziness etc.
I saw a doctor who thought it was my thyroid -- and I've read hypothyroidism is the first thing that should be considered for ataxia. However, the medication he tried only worsened my fatigue.
My akathisia has come back since all of this started -- a constant internal pressure that makes concentrating on anything impossible, but the relentlessness of it also means I can't just lie down or not do anything.
Being in this state all day is so hellish -- between home, having to eat constantly to manage the blood sugar drops, the restlessness, weakness etc.
I just don't feel like it's simple depression/anxiety -- and the balance problems suggest otherwise. I know that 'adrenal fatigue' doesn't exist, but it obviously looks like a pituitary problem on paper. It's like my body has become completely unable to generate a stress-response .. even to the most minor of events like heat or physical activity. My symptoms are more consistent with chronic fatigue. If I take anything that lowers cortisol, I feel horrific.
My GP referred me to a neurological and endocrinological clinic and I've been waiting 6 months to be seen, but now he's saying it's psychological anyway. I'm due to see a neuropsychiatrist for the first time next week, but just don't know how I will even get to the appointment in my physical state, let alone explain any of this. And even then, I can't reasonably see what he could try at this point -- especially with the akathisia etc. My doctor tried an AD and it made everything 1000x worse.
I'm really not trying to be dramatic. I just don't see where I can go or what I can do from here. My family aren't rich but they have never even bothered to organize health insurance -- which means no inpatient treatment (I wouldn't be comfortable in a public psychiatric ward) and no TMS, which is available here now. I signed up for a Ketamine trial starting next month and have an interview, but am doubtful I will be accepted with all of my weird health symptoms.
I've always prided myself on my ability to survive, but I just don't feel like I can physically do it anymore. It's hell from the moment I wake up until I sleep. I constant obsess about suicide and have begun making plans in that direction .. much to my reluctance .. but going on like this seems impossible. I'm on suicide watch with the local hospital, but even if I went in, I doubt anyone would believe me. I would consider ECT at this point if it was going to do anything for me.
I just feel so angry .. like I'm dealing with the fallout of a situation that I was put in and never had any control over, and which subjected me to years of relentless, pointless stress. I don't really know what the point of this post is either. I just have always felt like this place was home in a weird way (even though I was away the last couple of years when I had been doing a little better).
Posted by jonhed on June 11, 2016, at 15:29:04
In reply to I don't think I have any options left, posted by g_g_g_unit on June 11, 2016, at 13:23:55
You are very good at expressing your self in text.
I'm sorry to hear that you're in this situation, and i know it's hell on earth to not even be able to do nothing because of the inner restlessness. It makes you extremely tired to constantly have to do something to avoid feeling intense anxiety or discomfort in your body.
I can't even lay down for 10 minutes after working 4 hours at a "easy"-job, (I work with second hand stuff because i've never had a job before.)
because my anxiety causing so much palpitations and abnormal heart rhythm that it feels like i'm going to stop function when i drift away into sleep.
The only time i can sleep is when i take my sleeping pills (zopiclone 15mg), and it has become a ritual to me in the night to make myself forget that i feel like sh*t so i can sleep for 6 hours.I can't say i know exactly how you feel, but i think it's pretty close.
8 month ago i was at a neurologist to because of my symptoms and they sent me back to the somatic care after ruling out every possible neurological disease.
I'm so tired after 14.00 (i think 2 pm, after lunch anyway), that i can barely stand up, and when i sit down my anxiety shoots up like never before. I have to move my body all the time, eating something, search for something, do the dishes again and again, when i really just want lie down..
I to have OCD and thinks that it might be one of the causes, but i don't know..
I also feel nauseous and dizzy all the time and don't know why. It worries my, but i have gone through every possible test for everything so it got to be psychological.
We have free health care in my country so i take blood samples every month for exactly everything, and the hospital start to get annoyed with me.This does not help you alot i think, but now you know that you're not alone..
I think it helped alot to read what you just wrote.
Posted by g_g_g_unit on June 12, 2016, at 2:04:24
In reply to Re: I don't think I have any options left, posted by jonhed on June 11, 2016, at 15:29:04
Thank you for the compliment, and I'm glad that I was able to help you in some way.
Are you taking any medications at the moment?
I don't think the restlessness is linked to OCD, at least in my case. I have experienced it before, usually as a side-effect of taking medications, though this time it just reappeared alongside all my other symptoms.
A few months ago, I was able to stay at a friend's house for 8 weeks while they were away. None of my physical symptoms changed, but 70% of my anxiety -- especially the constant fear and hypervigilance while my family is around -- disappeared. I hadn't known what it was like to feel safe and relaxed like that for 6 years now ..
I feel 90% sure that if I hadn't been forced into this living environment, I wouldn't be in this position now ..
And, of course, the kicker is that I am blamed by my family for not being able to cope.
Posted by MrChips on June 12, 2016, at 9:06:32
In reply to I don't think I have any options left, posted by g_g_g_unit on June 11, 2016, at 13:23:55
Hi,
I feel for you, particularly as I'm also stuck in a difficult situation with some similar symptoms and depression. I actually do have hypothyroidism but can't say the treatment ever made me feel any better. Have you had standard blood work done as well as tests for e.g. coeliac disease and B/D vitamins? Have you checked glucose levels during these episodes?
I don't know if you're aware but heat can trigger symptoms of MS (and presumably other myelin disorders) and hot baths even used to be used as a diagnostic tool. It's something I'm concerned about as I often have balance problems when walking, although it's hard to tell if it's true ataxia or some problem with muscle strength / coordination - I also get slight "foot drop" at these times.
The general slowing and fatigue I can certainly relate to - it's hard when doctors won't take symptoms seriously and put it down to depression, especially when you really feel something else is going on, although depression / anxiety do tend to make such symptoms more unbearable.
Posted by g_g_g_unit on June 12, 2016, at 9:55:03
In reply to Re: I don't think I have any options left, posted by MrChips on June 12, 2016, at 9:06:32
Thanks for your reply, and sorry to hear you're going through something similar. Depression/anxiety was bad enough, but I honestly had no idea things could reach this point.
Have you found psychiatrists helpful at all, or are they at least sympathetic/not dismissive of your symptoms?
I had quite a lot of standard blood tests done and I'm deficient in a lot of things -- Vit D, B12, Iron etc. but because of the 'adrenal issues', even attempting to supplement those makes me worse. I was checking my blood sugar during episodes and it was spiking after meals, then quickly dropping. Going on a Keto diet has helped somewhat.
I don't know if I have true ataxia either. It seems less to do with weakness, though, and more a strong sense that I am off-balance and things are always rocking, moving etc. (as if on a boat).
I just cannot see any point in persisting anymore. I just about exploited the whole pharmacological arsenal. And it's not like my stress came from work or a lifestyle that I can try to change; I've been housebound and it's mostly come from home itself, so will just keep going on and on.
It is difficult -- I feel very stuck on the cusp, between wanting to stay alive and feeling like I don't have any options left. I'm curious what the psychiatrist will say.
> Hi,
> I feel for you, particularly as I'm also stuck in a difficult situation with some similar symptoms and depression. I actually do have hypothyroidism but can't say the treatment ever made me feel any better. Have you had standard blood work done as well as tests for e.g. coeliac disease and B/D vitamins? Have you checked glucose levels during these episodes?
> I don't know if you're aware but heat can trigger symptoms of MS (and presumably other myelin disorders) and hot baths even used to be used as a diagnostic tool. It's something I'm concerned about as I often have balance problems when walking, although it's hard to tell if it's true ataxia or some problem with muscle strength / coordination - I also get slight "foot drop" at these times.
> The general slowing and fatigue I can certainly relate to - it's hard when doctors won't take symptoms seriously and put it down to depression, especially when you really feel something else is going on, although depression / anxiety do tend to make such symptoms more unbearable.
Posted by SLS on June 12, 2016, at 11:25:25
In reply to Re: I don't think I have any options left » MrChips, posted by g_g_g_unit on June 12, 2016, at 9:55:03
Are you bipolar?
- Scott
Posted by g_g_g_unit on June 12, 2016, at 12:17:56
In reply to Re: I don't think I have any options left » g_g_g_unit, posted by SLS on June 12, 2016, at 11:25:25
> Are you bipolar?
>
>
> - ScottI do not know. I've never experienced mania, whether medication-induced or otherwise. One of my relatives, an aunt, is bipolar. I am extremely sensitive to increases in noradrenaline, which I always thought might be an autistic-spectrum or Bipolar thing.
Posted by SLS on June 12, 2016, at 15:00:25
In reply to Re: I don't think I have any options left » SLS, posted by g_g_g_unit on June 12, 2016, at 12:17:56
> > Are you bipolar?
> >
> >
> > - Scott
>
> I do not know. I've never experienced mania, whether medication-induced or otherwise. One of my relatives, an aunt, is bipolar. I am extremely sensitive to increases in noradrenaline, which I always thought might be an autistic-spectrum or Bipolar thing.It might be worth considering yourself as being bipolar temporarily - at least for the sake of experimentation with different drugs. Have you ever combined Lamictal, Abilify, and low-dose lithium?
Which antidepressants have provided you with the most improvement? I am particularly interested in how you react to Wellbutrin. Did it help, or did it make you feel worse with anxiety and anger?
Intranasal administration of ketamine works for a great many people. IV admistration is not always necessary.
"Intranasal Ketamine Produces Long-Lasting Antidepressant Effects"
http://bipolarnews.org/?p=3791
Here is what I'm taking right now:
Parnate 80 mg/day
desipramine 300 mg/day
Lamictal 300 mg/day
lithium 300 mg/day
Abilify 10 mg/day
prazosin 20 mg/day
- Scott
Posted by g_g_g_unit on June 13, 2016, at 8:29:41
In reply to Re: I don't think I have any options left » g_g_g_unit, posted by SLS on June 12, 2016, at 15:00:25
>
> It might be worth considering yourself as being bipolar temporarily - at least for the sake of experimentation with different drugs. Have you ever combined Lamictal, Abilify, and low-dose lithium?I've never tried any of the drugs you listed, and would probably avoid Abilify because of akathisia (which I'm currently experiencing anyway). My general concern is how I will tolerate anything at this point due to the HPA-axis dysfunction, given my reaction to e.g. Reboxetine.
>
> Which antidepressants have provided you with the most improvement? I am particularly interested in how you react to Wellbutrin. Did it help, or did it make you feel worse with anxiety and anger?I only really had luck on Parnate, but it was horrible for anxiety. I didn't like how I felt on Nardil (too disinhibited) and I felt spacey. I tried Wellbutrin about 10 months ago when my symptoms began; it did not improve my physical fatigue at all, which surprised me .. I think it had some modest effects on mental energy, but no, I don't recall feeling angrier.
>
> Intranasal administration of ketamine works for a great many people. IV admistration is not always necessary.
>
> "Intranasal Ketamine Produces Long-Lasting Antidepressant Effects"
>
> http://bipolarnews.org/?p=3791
>There is a trial for intranasal Ketamine underway but again, there's the question of whether I would tolerate it, or even qualify for the trial, given my symptoms.
Posted by SLS on June 13, 2016, at 14:01:16
In reply to Re: I don't think I have any options left » SLS, posted by g_g_g_unit on June 13, 2016, at 8:29:41
> > It might be worth considering yourself as being bipolar temporarily - at least for the sake of experimentation with different drugs. Have you ever combined Lamictal, Abilify, and low-dose lithium?
> I've never tried any of the drugs you listed, and would probably avoid Abilify because of akathisia (which I'm currently experiencing anyway)Rexulti (brexpiprazole) has less of a liability for causing akathisia than Abilify (aripiprazole).
Have you tried Saphris (asenapine)?
Viibryd (vilazodone)?
Brintellix (vortioxetine)?
Which drugs caused you experience akathisia? How about Zoloft?
> My general concern is how I will tolerate anything at this point due to the HPA-axis dysfunction, given my reaction to e.g. Reboxetine.
My guess is that more people with depression have HPA-axis stuff going on than there are who don't. Also, there is probably some degree of dysautonomia. I almost committed suicide on reboxetine. I respond well to desipramine. It is difficult to predict in the real world according to what we see on paper. Too many theories. Some work, some don't. In your case, I would play dumb and not to be quick to exclude drugs from consideration. What do you think? You know your body and mind best.
> > Which antidepressants have provided you with the most improvement? I am particularly interested in how you react to Wellbutrin. Did it help, or did it make you feel worse with anxiety and anger?
> I only really had luck on Parnate, but it was horrible for anxiety. I didn't like how I felt on Nardil (too disinhibited) and I felt spacey.I responded amazingly well to Nardil the first time I took it. I believe that the disinhibition would abate and the spaciness disappear altogether. How did you titrate the dosage? Lots of people feel euphoric or hypomanic when they first start Nardil. Perhaps this is where your sense of disinhibition comes from. This euphoria is almost a passing startup effect when treating unipolar MDD. However, this is not necessarily true of people with bipolar disorder. In this case, Nardil can trigger true mania.
> I tried Wellbutrin about 10 months ago when my symptoms began; it did not improve my physical fatigue at all, which surprised me .. I think it had some modest effects on mental energy, but no, I don't recall feeling angrier.
This is good. You might want to try combining Wellbutrin with Effexor, and perhaps adding Lamictal if necessary.
> > Intranasal administration of ketamine works for a great many people. IV admistration is not always necessary.
> >
> > "Intranasal Ketamine Produces Long-Lasting Antidepressant Effects"
> >
> > http://bipolarnews.org/?p=3791
> >
> There is a trial for intranasal Ketamine underway but again, there's the question of whether I would tolerate it, or even qualify for the trial, given my symptoms.What symptoms of yours would you be disqualified for?
I had my doctor prescribed ketamine to be prepared for intranasal administrating using a local compounding pharmacy. If you react badly to it, you can either adjust the dosage or stop taking it completely. Ketamine leaves the body very quickly. You could start with "subtherapeutic" doses of intranasal ketamine to test the waters.
Feeling "weird" or "spacy" on a drug in the beginning is not always a bad thing - as long as it does not making you feel worse. For me, this was true of Nardil. It was also true of adding desipramine to Parnate.
I hope something here helps you.
- Scott
Posted by Lamdage22 on June 14, 2016, at 13:31:24
In reply to Re: I don't think I have any options left » SLS, posted by g_g_g_unit on June 13, 2016, at 8:29:41
Akathisia is terrible. I have been there with Abilify and a few other meds.
Posted by bleauberry on June 14, 2016, at 14:29:43
In reply to I don't think I have any options left, posted by g_g_g_unit on June 11, 2016, at 13:23:55
I can relate to your post. Been there done that.
I ended up deserting the entire psychiatric field since it was obvious they had no clue what they were doing, even after 10 years, 20 years, failures the whole time, backpacks full of failed meds, failed ECT, attempted suicide, ambulance rides, psychiatric ward stay...
I tried my own meds. Can get them online from international pharmacies easy enough. I made better choices for myself than the pdocs did. But it didn't matter. I was still pretty depressed. The whole psychiatric approach just proved itself disappointing.
My journeys eventually led to God. That helped a lot. That's when "good luck" started to happen. "Coincidences" started to happen. I gained wisdom out of pure nothingness that previously did not exist. He led me to the right doc, the right diagnosis, the right treatment, and eventually remission. I am well without a single psychiatric medicine. I do take a lot of supplements that are way better than the meds.
At some point, anyone who truly wants to get well has to take over at least some of their own care and not be such a puppet to doctors.
Anti-microbial.
Anti-toxicity.
Anti-inflammation.Those three broad categories hold 95% of all the cures on earth for even the worst psychiatric patients. In my opinion. Been there done that.
Every time I pop in here - maybe twice a year - I used to be here every day for decades! - I mention that if a psychiatric patient were to undergo Lyme treatment with herbal medicines and/or antibiotics despite no Lyme diagnosis, most of the people that do that will find themselves greatly improved within a 2 to 9 month window, though for some people like me, much longer, 3 years. But after 20+ years of getting nowhere in psychiatry, 3 years was pretty fast to get remission!
I don't think Lyme in particular is at fault with so many people. But rather, the stuff Lyme causes, which have a great many other sources besides just Lyme. Inflammation, toxins, stealth infections of viral, fungal, bacterial, or all of the above. Treat those, mood gets better, good potential.
Posted by Mary GG on June 14, 2016, at 15:06:30
In reply to I don't think I have any options left, posted by g_g_g_unit on June 11, 2016, at 13:23:55
Please know there was absolutely nothing "dramatic" about your post. Nothing.
I would never wish suffering on anyone else but there is a strange comfort I get knowing that I am not the only one who feels like they are running out of options. The most heartbreaking thing for me is when my doctors actually shrug their shoulders at me at this point. If the medical professionals are throwing in the cards on me then how on earth do I keep fighting?! But I do. I am suicidal and I still fight. I refuse to accept this as a standard of life. And I refuse to to believe just because I have a million and one things wrong with me that I should have to live pain and misery every single day.
I don't know if this will help you at all but sometimes when I feel I cannot go on I remind myself that as odd as all my conditions are someone else is going through this. And if I give up who will force these doctors to keep looking for answers? Maybe some little girl somewhere is just now starting to go through what Ive gone through my whole life. And maybe just maybe if I don't give up and I push these damn doctors to continue to search for answers then maybe her pain will be less someday.
The other thing is I find it much easier to fight for other people's lives than my own because I am so broken. But if I look at my fight as beneficial to others I will never ever stop fighting.
So let's do this. If not for ourselves for someone else. And one day I will be healthy again and realize and know in my heart that I am worth fighting for.
Posted by Horse on June 14, 2016, at 23:18:18
In reply to I don't think I have any options left, posted by g_g_g_unit on June 11, 2016, at 13:23:55
If parnate has had some success, has your search to treat the resulting anxiety been thorough? I can't recall if you experience ocd symptoms, so that might be a deal breaker there, but I don't know.
I experience extreme fatigue which is relatively chronic and idiopathic in origin. I've felt hopeless before, so please believe you're not alone. Nothing has made me so wretched as when I'm unable to do what I want.
Posted by Lamdage22 on June 16, 2016, at 10:23:08
In reply to Re: I don't think I have any options left » g_g_g_unit, posted by Horse on June 14, 2016, at 23:18:18
yes you have to refuse suicidal thinking. i did it and so can you
Posted by Lamdage22 on June 16, 2016, at 10:37:27
In reply to Re: I don't think I have any options left, posted by Lamdage22 on June 16, 2016, at 10:23:08
it is empowering to exercise control over your mind.
This is the end of the thread.
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