Cocktail 69

We added a micro-dose of lithium.  So this time Seroquel, lithium, topamax, gabapentin, Emsam, klonopin, hydroxyzine as needed, valium as needed. I think technically I've probably been on this combination before but not with the lithium so very low. 

After a month with the lithium very low we increased it slightly 3 days per week.  I had a level done right after Christmas and since it has done no good expect to be taken off it as soon as Dr Brain gets around to it.  I hope this is before I have to pay to refill since she wrote the script for only 2 weeks worth and the co-pay isn't cheap. 

The next drug with be clozaril, starting with a rapid taper of seroquel in the hospital sometime, well really anytime now.  I assume I'm waiting on a bed but haven't gotten an update so don't really know what is going on.  But that's what is happening.  So cocktail 70 will be a HUGE difference.

Cocktail 67 and its' failure and Cocktail 68

After 1500 mg of Seroquel failed to work this spring I went on an anti-psychotic called loxapine.  Unfortunately from the beginning I had muscle pain that I kept blaming on poor posture while sewing, sleeping funny, walking too much, new sneakers, etc.  Eventually I realized it was muscle rigidity from the loxapine.  That was treated with valium and Cogentin but after a few weeks I began have uncontrolled oral motor movements and so needed the amount of dopamine in my brain to be reduced.  We attempted lowering Seroquel to 800 mg from 1200 mg but it didn't help and so I was forced to taper off loxapine.

This put me in the hospital where the plan was to change from Emsam to Nardil.  I can't afford Nardil, which is not covered by my insurance, so that change didn't happen.  Instead I went back to the meds I was on when this episode began (9 mg/24 hours Emsam, 1200 mg of Seroquel, 25 mg topirimate, 400 mg gabapentin, 2 mg Klonopin HS, 1 mg klonopin PRN, 5 mg valium PRN) with the addition of Cogentin 1 mg.

After a month without EPS (the muscle problems and oral motor movements) I was off Cogentin and the Emsam was increased to 12 mg/24 hours.  At this point I am maxed out on every med and a major change is going to be needed soon.  If there is not adequate response to the Emsam at this dose I have been referred for consideration for ECT which I am very willing to do because it is not a drug and I am having a hard time believing meds can help sufficiently after 10 months of this episode and knowing there is nowhere else to go with what I'm on.

May 2014-May 2015

Apparently cocktail 66:

This year has not had a lot of med changes.  Things have been relatively stable most of the time.  Not every day or every week but I haven't cycled like in the past.  We did try to increase gabapentin to 500 mg but I immediately had issues so we stopped.  I didn't tolerate gabapentin well before at more normal doses and that apparently will continue.  Due to surgery I was on Vicodin for part of the summer and like after my hysterectomy it seemed to have a mood stabilizing effect in the few weeks I took it.  Too bad it's not a viable mood stabilizer.

In February 2015 I started an episode that became pretty severe by March 2015.  I went back on valium but it wasn't helping; if I took it before I was tired it did nothing and if I took it after I was tired but not asleep it just made me sleep all day and have trouble sleeping the next day.  So we tried liquid valium which just made things worse.

Ultimately I was upped to 1500 mg of Seroquel XR temporarily and am taking 2.5 mg of valium when I start feeling tired and then another 2.5 mg of valium when I'm starting to get sleepy.  I'll eventually need to get off all of this and back to my regular doses but first I have to conquer this episode.  I am also using pink grapefruit essential oils to calm myself and having good success with that.  It's not a medicine but it helps me relax a little and it if works it deserves mention here so that I can remember it later if needed.

Long time--Catching up to May 2014

It's been way too long since I updated.  There were some big changes and then things were pretty stable for a while and I got lazy.

Anyway, Feb. 1, 2014 I had my 3rd lithium toxicity.  That was the end for lithium.  This one involved being violently ill  to the point my mom almost called an ambulance but there isn't a good place near here for psych and there was no way to get me to my hospital so we waited and watched and I stopped taking lithium.  Sometime after that I began to get depressed and wanted lithium back, even knowing it was a bad idea. So my Seroquel XR was increased to 1200 mg.  That stopped the symptoms I was having then pretty effectively.  So at that point my meds were:

• Seroquel XR 1200 mg
• Emsam 9 mg/24 hour transdermal
• Klonopin 2 mg bedtime, 1-2 mg PRN 
• Gabapentin 400 mg
• Topamax 25 mg
• Amitiza 24 mcg twice a day (constipation)
• Singulair 10 mg (asthma)
• synthroid 88 mcg (thyroid)
• Vit. B
• multi-vitamin
• Vit. D
• Calcium
• Amerge (triptan for migraines)
• magnesium (for migraines)
• Vicodin prn for migraines that don't respond to Amerge or that Amerge won't work for as it has a window of opportunity that is minutes long)
• inhalers as needed (I choose to not use one for maintenance because it makes me hyopmanic)

In April 2014 an extremely stressful event occurred in my family and I was using all my Klonopin and still couldn't sleep so a low dose of Valium was given.  I could use 1.25-5 mg and mostly was pretty good around 2.5 mg.  It worked quickly and effectively and I got 8-10 hours of sleep and woke up refreshed.  I tapered off that in late May 2014.

Update

If I remember correctly I have now been on 64 med cocktails. The current one is doing fairly well. I still need something that is more effective but this is what I'm going to get at this point. The current meds are:

• Seroquel XR 900 mg
• Emsam transdermal patch 9 mg/24 hours
• Klonopin 2 mg daily
• Klonopin 1-2 mg PRN, rarely used right now
• Neurontin 400 mg 
• Topamax 25 mg.  I was trying this for migraines and can't get high enough for that to help but it does seem to help my mood.  I was on 37.5 and had some side effects and backed off but I think I want to try to go back to that dose.
• Nexium 40 mg
• Singulair 10 mg
• Various asthma meds PRN
• Amitiza (constipation med)
• Synthroid
• magnesium (helps with migraines)
• higher dose B vitamins (need extra riboflavin for migraines)
• hair, nails and skin complex that I may stop soon since my hair isn't falling out anymore (started after my hysterectomy)
• multivitamin with extra B vitamins
• Calcium plus Vit. D
• Vitamin D
• chromium to try to even out blood sugar levels
• cinnamon for same.  May be useless but it was worth a try

I'm still supposed to start melatonin for migraines but haven't had time that I've not been adjusting to other med changes to do that.

I think that's all for now.

Whoops

I let a lot of time and med changes pass without updating. This is more for my own information than anything but it was invaluable when I applied for SSDI and since I'll have to provide updates occasionally this is still very helpful. Current meds: 900 mg Seroquel XR 400 mg gabapentin 625 mg lithium CR (eskalith) 25 mg Topamax (working on increasing to 37.5 on the way to 50 if tolerated. Taking for migraines but helping with mood) 2 mg Klonopin at night, 1-2 mg PRN 9 mg/24 hr transdermal patch Emsam (MAOI patch) 24 mcg Amitiza twice daily for constipation 88 mcg levothyroxine 10 mg Singulair 40 mg nexium multivitamin Caltrate vitamin D Hair, skin, nails vitamin supplement Albuterol, alvesco, ventolin inhaler all as needed for asthma (have permission to use daily steroid as needed to decrease agitation side effect) Vicodin PRN 1/2-1 tab for migraine pain

2 months

Two months have passed, including a hospitalization and my meds have changed yet again.  Latuda is gone.  Sinequan was tried and is gone.  Atarax was tried and is not in use.  Emsam and Seroquel doses changed.  That's off the top of my head.

At the moment I am taking:
700 mg Seroquel XR
625 mg lithium CR
Emsam 9 mg/24 hours
Klonopin 1 bedtime, 1 PRN
Vistaril 100 mg bedtime
Probiotic
Multivitamin
Vit. D 2000 ius
Calcium
Amiloride
Protonix (soon to change to Nexium as I have a bottle of that leftover)
Alvesco (asthma inhaler)
Synthroid
Amitiza (constipation)
Singulair 10 mg
Ventolin inhaler PRN
Albuterol nebulizer treatments PRN
Lunesta PRN