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Wonderfalls
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Default Mar 13, 2018 at 11:38 PM
  #21
Tegretrol: "The side effects have often been brutal. I forgot to mention severe akathisia that was torture-like, in 2009, when I used high doses of Seroquel without Atarax or Gabapentin - atenolol did not work well to ameliorate the akathisia. In 2017 I tried again, this time with Gabapentin or Atarax, and both worked, and it seemed like a miracle, but then I was hit with QT-prolongation."

Atenolol is a beta blocker, true, but it's heart specific. It works on my extra heartbeat (PVC), for example, but not for my akathisia. For that you need a systemic beta blocker like propranolol. Antihistamines (Atarax) can help akathisia, but are not very strong for that. A few studies have shown that gabapentin can work but it's definitely not first line.

Another drug you mentioned having a rash with and said that Benedryl didn't help. It seems obvious, but you didn't say. Did you try a cortisone cream with that? [I was concerned myself that cortisone is a steroid but I've never had a problem with topical cortisone. Maybe not related to prednisone?]

Saphris is not considered a heavy weight gainer (like Zyprexa, say) but I have heard of people putting on weight with it, which is one reason I ruled it out. I think Latuda is much better in that regard, but it also can cause akathisia. I take 80mg propranolol for that. I would anyway; it's well worth it for me, but I admit I would be taking a just a heart-specific beta blocker anyway for the PVC.The propranolol of course works for both.
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Default Mar 14, 2018 at 01:41 PM
  #22
AspiringAuthor, I regularly get ECT treatments in San Rafael / Marin. If you’d like a detailed description of the procedure, send me a PM.

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Default Mar 14, 2018 at 01:42 PM
  #23
Have you ever heard of or considered trying TMS (Transcranial magnetic stimulation)? I went to a psychiatrist who had all of the equipment to do it in his office. He wrote several papers about it's effectiveness. You would have to go for 5 days straight for a treatment and do that for a few weeks. It is supposed to be very helpful for depression and the doctor said it would help with mixed episodes also.

https://psychnews.psychiatryonline.o...pn.2017.pp11b3

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Default Mar 14, 2018 at 02:26 PM
  #24
Quote:
Originally Posted by AspiringAuthor View Post
I thought Asenapine was doing it, but not at the cost of 3 kilos gain per week.

So,

- two overdoses in history, the first one nearly lethal

- racing thoughts a big issue and I only learned to recognize them this past summer. Mixed states with racing thought speed and depressed thought content.

- self-harm during a break from reality when not on antipsychotics, classified as the second suicide attempt because it could have led to death, but in my mind I was killing my voice in self-punishment by forcing myself in chew on and ingest OxyClean (=laundry detergent booster)

In general, organically I tend to highs and my depressions are all situational. Can be very deep, but always situational. Highs can be without reason. So this is strongly Bipolar I, with Psychotic features.

Sleep is a huge issue.

My late mother had Bipolar, without suicide attempts. I am a victim of CSA, she was not. She had more depressions, longer depressions. Essentially was addicted to Amitriptyline and tranquilizers. Suffered huge weight gain from Amitriptyline. Combined alcohol with tranquilizers (alcohol has not effect on me and neither do tranquilizers). Had tardive facial dyskinesia in the form of a tic that got worse when she was anxious. Reportedly a side effect of thorazine. Took other first generation antipsychotics.

In more than 10 years since diagnosis, I tried:

- Depakote - severe weight gain, paradoxical tendency towards hypomania unless combined with Lithium, low platelet count and severe hand tremor

- Lamictal - causing highs, insomnia.

- Seroquel - regrettably, almost caused QT-prolongation, otherwise was a good drug when combined with either Gabapentin or Atarax to ameliorate akathisia/knee jerks

- Risperdal - caused extremely deep and at times psychotic depression, pre-Diabetes and anorgasmia/vaginal dryness, Parkinsonism that was managed with Cogentin. The worst depression happened on Risperdal and essentially wiped out cognitive abilities and insight into self in that I was not able to identify that I was depressed and that depression was iatrogenic essentially. Went on for many months. Happened two times in my life. Second time I ended up in a psychotic suicidal mixed state that Geodon relieved in a matter of couple days. See below on Geodon for maintenance.

- Geodon - was side-effects-free at lower-to-medium doses but at a high dose (in combo with other drugs) caused a very scary episode of acute facial dyskinesia - my tongue moved rhythmically in my mouth and then wrapped around the upper lip. Also, did not cause enough sedation upon getting used to it and did not work effectively enough. I had breakthrough symptoms

- Lithium - abnormal creatinine (kidney function test), acne that persists upon discontinuation but is manageable with retin-A and benzoyl peroxide, hypothyroidism that persists upon discontinuation and I have to take Levoxyl for life now, weight gain (not major), erosion of foot enamel; was not effective and I had a lot of breakthrough symptoms.

- Tegretol - a tiny dose gave me supreme serene mood, but I had skin rash that did not respond to any antihistamines. Also had congestion, but it went away. The skin rash was not dangerous in that it was dry, but it was not tolerable. Even combos of antihistamines were not effective.

- Abilify - was not effective at all for hypomania. Caused word finding difficulty that persists upon my discontinuing (after about of month of taking it, I discontinued in late November but still have word recall problems). Also had one episode of loss of control over speech / facial muscles that was scary.

- Asenapine - severe weight gain

- Olanzapine - severe weight gain

- Tranquilizers do not work at all (I am kind of glad since I cannot become addicted)

- Gabapentin helps with sleep, but not with mood. I love it because when I take it, I have dreams as in normal, unmedicated sleep.

- Trazodone helped with sleep, then stopped working. I restarted once and it did not work. Now I am restarting again and it seems to work, although in combo with other drugs currently it is hard to tell.

- Atarax. Helped with sleep, then stopped working. After awhile started working again and is an option.

- Amitriptyline - severest weight gain. Plus, since the main issue is highs and I become unmanageably creative on it, it is not my drug for sure.

- Prozac smallest dose. Helped with situational depression and suicidality, but overdid it.

I have not tried Latuda or Vraylar. Concerned that they would cause hypomania and insomnia.

I have not tried Trileptal. Concerned about the suicidal risk warnings.

I have not tried Clozaril. Concerned about severe weight gain and the white blood cell count.

I can try the above (Latuda, Vraylar, Trileptal, Clozaril).

Have I missed anything? I cannot tolerate Topamax which I tried for migraines - I had severe dizziness, complete anorgasmia, aversion to food and drink with the resultant spike in migraines since my main trigger is dehydration, and general malaise, all at the smallest dose.

My daughter has epilepsy and migraines. I do not have epilepsy. I have heard of people using Keppra for bipolar off-label, even though it is only approved for epilepsy.

I manage migraines effectively now with BOTOX, promethazine, indocin and imitrex.

I just got approved for SSDI. Approval came in less than two months. I know this is highly unusual.

I feel demoralized. Asenapine worked just fine and I felt great, but I went up from 100 to 108 kilos and I was already obese. I am 165 cm (5'5'').

Would appreciate any pointers.


There are some studies out there that suggest that those that are drug resistant can try sleep modification techniques to reduce symptoms. For example, methods that increase sleep in mania or deprive light. Or sleep deprivation for depression with light therapy. All of this is done with a doctor's help but they have shown some effectiveness to this.

In addition, if they haven't tested you for other health factors that mimic bipolar that's a must. I'm sure they have because that's pretty much ethical protocol but I've heard of doctors that didn't. Your eyesight needs to be checked if you are seeing things, and MRI of your brain, a vitamin and mineral count, blood cell count, thyroid check etc. I'm sure it already has been checked but just in case it hasn't I would look into it.

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Default Mar 14, 2018 at 02:42 PM
  #25
Have you tried ECT? It has a much better success rate than medication. Clozaril is for schizophrenia.

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Default Mar 17, 2018 at 07:07 PM
  #26
Check out Merlin’s post in the Bipolar Success stories sub forum
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Default Mar 19, 2018 at 09:15 PM
  #27
Quote:
Originally Posted by Wonderfalls View Post
Tegretrol:

Another drug you mentioned having a rash with and said that Benedryl didn't help. It seems obvious, but you didn't say. Did you try a cortisone cream with that? [I was concerned myself that cortisone is a steroid but I've never had a problem with topical cortisone. Maybe not related to prednisone?]

.
I have not tried cortisone. Also, I did not consult with a dermatologist - I took Benadryl and Famotidine that ER dr prescribed. Since then I have written to the dermatologist who suggested that I could use topical Benadryl cream, work on moisturizing preventatively, be seen, etc. So I am thinking of trying Tegretol again armed with those tools and knowledge.
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Default Feb 09, 2019 at 11:58 AM
  #28
I am retrying Tegretol XR. First morning - so far so good. Dermatologist suggested I prep the skin by ample moisturizing, which is what I am doing. Hopeful.

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past medications: Depakote, Lamictal, Lithium, Seroquel, Trazodone, Risperdal, Cogentin, Remerol, Prozac, Amitriptyline, Ambien, Lorazepam, Klonopin, Saphris, Trileptal, Clozapine and Clozapine+Wellbutrin, Topamax
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Default Feb 09, 2019 at 12:30 PM
  #29
Not understanding much about either psychology or brain functions, but rather from an electrical engineering point of view, ECT seems a very crude measure. Voltage surges don't usually do computers much good, for lack of a better comparison. But then, all those psych meds equally affect the whole body, when they are actually meant to help with specific symptoms in specific brain circuits.

For therapy targeted at specific brain regions I find brain pacemakers an interesting new development. Long term positive effects of this seem much more plausible to me than ECT, just from an engineering point of view again.
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Default Feb 09, 2019 at 12:35 PM
  #30
I'm so sorry you're going through all of this, AspiringAuthor It sounds like you're handling all of this pretty well. Just wanted to let you know that I admire your strength and clarity of vision. If you have tried every other meds out there, then I guess you may start considering ECT as an option. Stay safe and take care of yourself. Keep doing what you're doing. Have an healthy lifestyle, eat well, ecc. Evaluate all the options you have. You can do this! You're strong, I know that. I believe in you. Feel free to PM me anytime. Let me know if I can do something to help you. Wish you good luck! Let us know how it goes. Sending many hugs to you
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Default Feb 10, 2019 at 08:17 AM
  #31
Can't say I have any further suggestions. You have been looked after well here. I just want to say as another treatment resistant BP person I understand the overwhelming frustration and olympic athletes stamina that it takes to keep fighting for the treatment that works, and it sounds like you have gone, and are going through, a tougher fight than I. Hang in there.

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Default Jul 23, 2019 at 09:08 PM
  #32
I find insomnia the worst symptom of my BP condition, so I had to chime in. Ambien was only giving me 4 hours of sleep for about two nights at my peak hypomanic phase. I have learned to avoid strong coffee and sweets during insomniac. I go swimming, and I take either antihistamine (Hydroxyzine up to 150mg), but I have never gone above 100 mg or 25-50mg Thorazine.
Now if I do not sleep one night, I will sleep the next day — no big deal. You must not get anxiety over insomnia because that is the vicious circle. I wish you the best to find a solution. When you refuse to get up at night and force yourself to remain in bed, then you start "micro dreaming", and if you do not stimulate yourself, eventually you fall asleep. I get rested this way when hypomanic. Lithium allows me that rapid change of thoughts, agitation, and panic are in abeyance.

Oh yeah, the other night I was insomniac, and I took THC and CBD if nothing the anxiety went away and I listened to music all night!

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