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

Review and Update

The last few months have brought a long of different meds into and out of my life.  Because I haven't done a full list with update on everything I've ever taken for a very long time and I need to demonstrate something to my pyschologist I am going to post that below the current list.  The current list is in flux because I've been incredibly unstable after 2 years of stability, but  as of today this is it:
Seroquel XR 650 mg
Lithium (Eskalith) 1/2 of a 450 mg tablet (recovering from toxicity and on 1/3rd dose while stabilizing mood)
Emsam (MAOI patch) 9 mg and 12 mg alternating days
Klonopin 2 mg at bedtime, 1 mg twice daily as needed
Amitiza 24 mcg twice daily for constipation
Nexium (switching to Xanax 150 per pulmnologist this week)
Amiloride 10 mg (for diabetes insipidus)
Synthroid 88 mcg
Nuvigil 225 (on hold because I'm on disability and very sensitive to agitation right now)
Singulair 10 mg (asthma)
Alvesco (inhaler for ashtma twice daily)
Probiotic 1 daily
Latuda, new antipsychotic.  Tritrating dose up currently at 20 which is half the usual starting dose.

So, I am currently at 19 pills/patches/puffs per day.  Still way down from the record of 33 although it feels like I'm taking a lot right now.

PRNs:
Vistaril 50-150 mg as needed
Valium up to 10 mg as needed for sleep (no longer working because of tolerance)
Lunesta 3 mg for insomnia
Miralax
Colace (up to 500 mg)
Senna
Ventolin inhaler (up to 4 times daily for asthma)
Albuterol nebulalizer (up to 4 times daily for ashtma)

Should be taking but not for various reasons (mainly constipation):
multivitamin
vitamin B complex


As far as my history goes, it is this:

Thursday, May 3, 2007

The Comprehensive Master of Irony Med Experience

This list includes the meds I have taken in the years of my battle against treatment resistant bipolar I. My story is told in my blog. (Updated 8/10/09)

Xanax (fall 1997): sent to doctor by psychologist for antidepressants, given this instead. Slept for 3 solid days after one dose and refused to take it again.

Paxil (fall 1997): tremors, nausea, vomiting, diarrhea from first pill; rash by 3rd dose

Zoloft (fall 1997): no response; increased insomnia (now known as hypomania)

Remeron (winter 1998): fairly good response; new medication and doctor not sure how to dose so dose limited to 30 mg; significant sedation impaired ability to function well

Elavil (spring 1998): attempted switch due to insurance; returned to Remeron/Zoloft quickly due to increased depression and risks after being severely depressed recently

Remeron and Zoloft combined (spring 1998): good response and awake appropriate amount of time. Tolerated well until graduate school started in fall 1998. Unable to function with remaining sedation with required hours of study, labs, and lecture.

Zoloft (fall 1998): Depression not well controlled. Increased insomnia. Constant, debilitating diarrhea.

Zoloft and Trazodone (fall 1998): sleep improved somewhat but on dose of trazodone needed overly sedated.

Zoloft (fall 1998/early winter 1999): same side effects. Repeatedly asking to be allowed to taper off meds. Psychiatrist opposed due to severity of depressive episode and repeated episodes.

Nothing (winter 1999-spring 1999): Took self off meds without MD approval. Functioned well for several months until insomnia returned.

Ambien (spring 1999-fall 1999): Used as needed at a very low dose. Rarely used during the summer and early fall. Dose increased twice in October 1999.

Remeron (fall 1999-summer 2001): Taken at higher dose with almost no side effects. Very effective until winter 2001 when severe depression began; unable to see doctor or change meds due to insurance issues.

Wellbutrin (summer-early fall 2001): Unable to eat anything but chicken soup and mashed potatoes. Twenty pound weight loss in 6 weeks with constant nausea. No effect on depression even at higher doses.

Effexor (fall-winter 2001-2002): Loved this med. Sadly it cheated on me. Each dose I would get a response that seemed hopeful, then after 3 weeks it would fizzle out. Again, typical bipolar, but nobody around me knew it. On the maximum dose I was begging to die, which led to seeing the first psychiatrist who had an opening. (never do this; she was terrible)

Celexa (winter 2002-summer 2002): See Effexor. Except this time I kept trying to pretend I was all better because I thought I should be. I wound up very suicidal that time as well.

Ativan (winter 2002-Nov. 2009): Prescribed after an enormous panic attack and 3 solid days of crying this made more difference to me than anything had in years. As of June 2007 trying to switch to Atarax for increased control of anxiety without sedation/narcotics. Successful by July 2007; ativan for PRN use when extremely anxious or fast response needed or for insomnia.  Discontinued while switching to Emsam due to developing tolerance.

Lithium (spring 2002-winter 2006, spring 2007-now): Initially prescribed to boost the effects of antidepressants, the main result was to make it more obvious that I was cycling. Caused major (38% of body weight) weight gain. Required high dose and high levels but worked well after I got used to the side effects. Developed toxicity in winter/spring 2006. Unable to find effective dose that did not include symptoms of toxicity after that time so use discontinued. Resumed use when it became apparent that cycling is mostly controlled by this agent. Currently taking very low dose and trying to inch up as needed, with blood level just below what is considered low therapeutic. Side effects include thirst, constant need to pee, possible kidney stones, heat sensitivity, fatigue, very dry skin, and initially some pants wetting until timing was figured out. Side effects of toxicity much worse; see main blog in spring 2006.  Second toxicity in Nov. 2011 requiring hospitalization due to hallucinations and need for fluids.

Prozac (several horrible weeks in the summer of 2002): Placed on this by horrible psychiatrist who was basically giving up on me when I did not respond to celexa/lithium combination. At this point she'd admitted I was probably bipolar, then gave me something likely to make me manic. It made me terribly manic and so unable to think it took several weeks to be able to decide to stop the med and get help elsewhere.

Depakote (fall 2002-present): Began as first step in clinical trial determining efficacy of depakote/lithium/lamictal cocktail for rapid-cyclers. Initially on CR version with no success achieving therapeutic levels until switched to high dose ER version as a last resort. Side effects include serious fatigue, constantly dilated pupils with light sensitivity, heat sensivity that limits summer activities, constipation, weight gain, sweating, increased suspectibility to respiratory infections, and more thirst. Summer 2007 began taking very high dose (3000 mg; frequent labs indicate levels do not stay normalized). January of 2009 began tapering. Last dose taken in July 2009.

Placebo (winter 2003): This one isn't for sure but my reaction indicated probably placebo. I had no side effects for one thing. Easiest drug ever. I had an initial reaction that seemed good but after a week or so was determined to probably be cycling. I became suicidal and was nearly hospitalized during this time.

Lamictal (winter 2003-spring 2004; spring 2007-current): At first seemed great. Some headaches at first. Eventually I was on a very high dose. And then the daily vomiting started. After trying many things to stop the vomiting, including several months to taking 8 chewables instead of 1 or 2 adult pills it had to be stopped. The guidelines for use with Depakote now suggest limiting the dose to much lower than I took. I am currently re-trying it and have thrown up (only?) twice in 5 weeks. I am staying at a much, much lower dose this time and have noticed it can easily make me swing into mania. )6/04/07: I have been dealing with a very itchy, ugly rash all over my face for the last week. Lamictal is on hold and will re-start at half the initial dose and hopefully work back to where I have been. Unless I'm allergic in which case life just isn't fair, again. I've gotten 2 new side effect meds out of this. 06/16/07 Officially declared allergic and will not be given Lamictal again due to high risk.

Keppra (summer 2003): trialed as an additional mood stabilizer for several days. I don't remember specifically how but I felt "funny" on it and wanted off. No response noted in that time although I didn't give it much chance; I didn't realize yet how unlikely it was for anything to work for me.

Geodon (winter 2004-summer 2004): initiated with rapid dose increases due to very sudden and severe depression. Initially caused sedation and blurry vision. Also caused what I called the "zombie look" as I had no visible affect, ever. Patient's families inquired whether I was on drugs. After a few months began having strange, uncontrolled oral movements (tongue thrusting in and out of lips). That hurt because if I tried to control it my tongue rubbed on the inside of my teeth. Due to this and the onset of incontinence at night and then at work med was discontinued. It was effective while I took it, but not worth the side effects I developed.

Abilify (winter 2004):  It was added to Geodon to hopefully replace it when it didn't work quickly enough. My doctor suspected I would be sensitive and started me at something like 1/8th of the normal dose. Within a few days I was having episodes of falling. I would be standing still and then fall over. After seriously bruising/nearly fracturing my arm, having my vision become even more blurry and causing me to see double, I spent a fun night in the ER only to learn it would take weeks to clear from my body. In the meantime I developed akasthesia, a constant need to be in motion. Not needed on top of a mixed episode. It took 6 weeks for my vision to be functional enough to work and about a month before I could safely drive. A few days of this medication was enough to last forever.

Remeron(summer 2003-summer 2004): Resumed treatment with old favorite antidepressant at higher dose and with mood stabilizers. Very effective. Ultimately had to stop because it contributed to hypertension and edema (see Risperdal).

Provigil (winter 2004-2009? whenever Nuvigil came out): Added to decrease morning sedation so that work was a bit easier. Had to learn to alter dosing according to manic symptoms (can't take when manic) or depression. Dosing also changes with time of year (more in winter). I love and rely upon this medication. It is very frustrating though because I use it for something it is not approved for and my insurance pays only a smart portion, and it only pays that after my doctor has an annual "discussion" with my case manager. This year I was fortunate enough to have a psychiatrist reviewing my case. Once it took 5 appeals to get it covered. Stopped in 09/07 due to manic episode. Dec. 2007 trialing very low dose to prepare for return to work.

Nuvigil (2000?-present) same purpose as Provigil but with extended release so that it is much more effective with concentration issues.  Seems to work better at helping me wake up easily and early enough to work full-time.

Risperdal (spring 2004): trialed at low dose. Good response. Several days after increasing to bare minimal effective dose and really liking results noticed both legs were hugely swollen. The next day my blood pressure went up to as high as 194/100. I wound up in the ER again. Over the next few days with diuretics I lost 20 some pounds of fluid. It took several months to figure out that Remeron was further adding to the edema. I then had to take blood pressure medication for about a year to control that.

Effexor (summer 2004): trialed with mood stabilizers. I don't remember details, just that it didn't last long. Possibly we tried to replace remeron with this?

Imipramine (Oct. 2005-Nov. 2009): given as last resort antidepressant and worked better than all others had before. Dose has needed adjustments from time to time secondary to mania and depressive sx. Trialed d/c in Oct. 2007 which was unsuccessful. By 08/09 had increased to 90 mgs and unable to tolerate more but still have depression sx.

Risperdal (spring 2006): trialed again hoping it would not cause edema and hypertension. Unfortunately hope only lasted about 4 days.

Sonata (summer 2006): worked well but insurance refused to cover

Lunesta (summer 2006): see Sonata.  However, began using in 2011 as a PRN sleep medication.1/4 people has a genetic ability to taste this stuff.  I am one of them.  I do not like to take it because it leaves a bitter taste for hours.  However, it is relatively effective.

Rozeram (summer 2006): supposedly would cause gentle sleep with few side effects. I woke up extraordinarily groggy and unable to see. This was because my whole face was swollen and I had a huge rash. Cross that one off.

Ambien CR (summer 2006): Improved my life immensely because at a high dose I finally got some sleep after about 2 months. Eventually was too sedating as my episode dissipated. High on my life of things I'd take again though if an episode is totally out of control.

Trileptal (winter 2006-2007): attempted to replace lithium. Unable to tolerate constant sedation even at very low doses. Did not control cycling.

Atarax (June 2007-June 2008): using low dose three times daily to attempt to better control anxiety. Stopped use when discovered that the zyrtec needed for seasonal allergies is a derivative of atarax and I was experienceing serious fatigue as a result. Ativan is back in. Atarax used when PRN need is not as severe.

Risperdal (Sept. 2007): attempted to use low dose for short period to stop mania. Did not control mania and by day 10 started to have leg edema. Unable to increase dose safely so stopped.

Seroquel (Sept. 2007-August 2008): tolerated well at 650 mg and able to reduce to 600 mg in spring of 2008. Stopped to change to new version of Seroquel.

Seroquel XR (August 2008-present): able to tolerate at varied doses with far fewer side effects and less sedation than standard Seroquel. Has provided pretty solid stability since starting it, with a few milder depressive episodes. Dose was 300 mg until starting Emsam which is activating.  At that time dose increased to 600 mg and has varied from 600-900 mg depending on needs.  Typically between 650-750 as tolerated.

Fish Oil (August 2009): Trialing to hopefully boost antidepressant.  Some effects but nothing huge.

Emsam (Nov. 2009-current) MAOI patch for depression.  Requires some dietary restrictions especially with current dose being very high.  After learning simple care strategies including rotating sites, avoiding hot baths with patch on because it increases the release and removing any patch that starts to itch my skin issues disappeared.  If I break out slightly a tiny dab of diaper ointment (Balmex) works well.  I kept a notebook for the first 6-12 months to track sites and alternated left side of body to right, arms to trunk.  Now I use only arms and chest in different locations and with a sequence only i can follow.

Klonopin (Nov. 2009-current) Began using this in the hospital while acclimating to Emsam.  Much more effective than ativan.  2 mg used at night, 1 mg used most days in the morning, 1 mg PRN and not used often.  At times PRNs are used in combination such as severe insomnia or panic attacks.  More of this is used when more asthma meds are needed as they are activating.

Vistaril (Nov. 2009-current): 50-150 mgs PRN for anxiety.  If anxiety is severe alternate half doses of klonopin with 50 mgs of Vistaril every 2 hours.  Rarely need this but it does help.

Zyprexa (Sept. 2011)-taken as first a 5 mg pulse, then 10 mg pulse in an attempt to decrease agitation from akasthesia believed to be related to medications given during surgery in 8/2011.  Ineffective and discontinued while hospitalized at about 1 week.  Tolerated well.

Neurontin (Sept. 2011-October 2011)-used to treat akasthesia and agitation from this.  Had many side effects including double vision, paranoia, sedation, agitation, and was sensitive to doses, requiring very low dose to prevent sending people emails that said xhlkdjfsodifjs or that were not for them, or to let me drive safely.  The was paired with Cogentin (Sept. 2011-Nov. 2011) which helps decrease the motor activity of akasthesia.  While these sort of were for side effects akasthesia is too severe to qualify as a side effect in my book.   Cogentin was harmless.

Latuda (started 11/11)-new antipsychotic that after less than a week is improving my sleep and seems to have mood stabilizing abilities.  Will be adjusting to this for a while.

*************************************************************************************

Meds Taken Due to Side Effects

Inderal: used to decrease hand tremors from lithium. I initially resisted this drug because at the time I naively thought I could limit how much medication I could take. When the doctor insisted I try it because my tremors were so bad I was very glad to have it. I think I took this for about 3 years and then weaned myself off for some reason. By then I was so used to tremors they were not an issue.

Lasix: used to get off the extra fluid from the Risperdal experience. Not a good mix with lithium so originally given as one pill, then after several months of serious swelling my psychiatrist gave me several more to use at my discretion.

Toprol XL: I took it about a year and my blood pressure problems went away. I discovered this during the time I was off meds in 2006 and just never started it again (with the doctor's ok of course)

Hydrochlorothiazide: A diuretic that never worked very well but which was safer for my kidneys than Lasix. I took this routinely for a few months trying to get the fluid off as my blood pressure came down.

Scopolamine: A patch stuck behind the ear to help with the nausea I experienced with the undiagnosed lithium toxicity. I think it helped some. If my memory, which is hazy for that period, is correct, it allowed me to eat certain foods (tuna, baked potatoes, certain vegetables, fish). It also made my mouth as dry as I can imagine is possible, so I lived with a sour sucker in my mouth.

Prevacid Dissolvable: Another attempted treatment for my "ulcers" which may or may not have co-existed with the lithium mess

Prevacid Ulcer Pack: Combination of Prevacid and very high doses of amoxicillan and another antibiotic (Biaxin), which tasted terrible. It was 8 extra pills per day, and it may have helped the ulcers, assuming I had some, but it was quite hard on the rest of the digestive tract. They really should add Immodium to those packs. I believe that was supposed to be a month long treatment but I only lasted about 3 weeks.

Phenergan: I've had to take this twice thanks to psychotropics. Once to stop the vomiting from Wellbutrin, and once to stop the vomiting during the lithium toxicity. I can't ever take it again though because it apparently made me hallucinate. I kept having weird experiences on it, and days later discovered a sentence in it's description "May cause hallucinations". I'm sure I'm more susceptible to this given the bipolar thing, and hallucations turn out to be scary.

Synthroid: Lithium is hard on the thyroid. Months of overdosing on lithium is really hard on the thyroid. They used to give me hope that I would maybe regain thyroid function but it has been a year and nobody says that anymore so I guess I simply have hypothyroidism now forever. That's ok though in a way because thyroid hormone sometimes helps treat bipolar. Added Dec. 2007: I learned the hard way that thyroid levels being off can cause major symptoms for me. After only a few days of increased meds I felt a world better.

Atarax: Antihistamine used to treat the Lamictal rash. Essentially knocked out a week of my life. Potentially useful as a calming agent/sleep med during my next major mixed episode.  This is related to the Vistaril that I've been using since 2009.

Steroid Cream: The thing that finally made my face quit itching and breaking out.

Colace and Miralax: I've tried natural treatments for constipation as long as possible but finally am taking too many psychotropics.  Now that Amitiza exists these are PRN.

Senna: see colace and miralax

Probiotics: attempt to maintain bowel health and activity

Amelioride: diuretic that controls the loss of electrolytes as my body rapidly pushes fluids through thanks to the diabetes insipidus I have from lithium use.

Flaxseed Oil: to help with constipation and possibly depression.

Nexium: used to treat reflux which became significantly worse after beginning Seroquel and again with dose increase.  Changing to Xantac 150 in 2011 per pulmonologist.

Benadryl: used while inpatient psych Sept. 2011 as an attempt to decrease agitation.  Worked for a while and then caused increased agitation.

Mirena IUD: inserted in 8/2011 to help regulate cycles which were out of control due to lack of ovulation, probably from too many years of medications that are harmful to female hormones.

Long time

For a while nothing changed much.  Then I got lazy.

At this time my meds are:

Emsam 9 mg/24 hour patch
Seroquel XR 700 mg, hopefully going to start backing to 600 soon
Seroquel XR 50 PRN if I don't fall asleep
Klonopin 1 mg AM, 1 mg PRN, 2 mg bedtime
Vit. B
Vit. D 2000 ius.
Lithium 600 mg (Eskalith, which I seem to tolerate better for no good reason)
Amitza 24 mcg twice daily (for constipation.  Works well, I'm not consistent taking it twice daily but it still works)
Amelioride 10 mg
Nuvigil 125 mg (we made this dose to reduce the cost because I pay out of pocket)
Synthryoid 88 mcg
Lidoderm patch as needed to my injured ankle for pain reduction.
Nexium 40 mg daily

I'm about to start lots of Vitamin C to help with immunity as people are getting sick rapidly in my work area.  In fact 3 of the 6 I called today were ill and unable to participate and another was sick when I arrived.

So, I didn't wind up with less meds from last year's changes, but right now am on a lot of extra from an episode.

Even more changes

I am fighting terrible anxiety still since moving to the MAOI. So my med list is now this:

Emsam (MAOI) patch 9 mg/24h
Lithium 300 mg
Seroquel XR 600 mg
Nuvigil 150 mg
Synthroid 100 mcg (although I'm pretty sure that's way too low; I'll know in a week or so)
Prilosec
Amelioride 10 mg
Vitamin D (I have a significant deficiency and am now on maintenance)
Valium (1/4 of a 5 mg pill per day)
Klonopin 1 mg twice a day
Vistaril as needed (usually once per day)
Miralax one scoop (I'm off all other bowel meds, which is very amazing)

Things may change tomorrow. I had a fall today that is likely from meds. So who knows what comes next. This combination is the only way I've felt good in months, but I am well enough now to survive if I have to give up some anxiety meds. My depression is lifting, slowly but surely. Unfortunately I'm also developing some patch reactions, which I could live without, but it's common and someone will know how to help I think.

Everything has changed

I thought I updated this list not terribly long ago, but either a year has flown by or I didn't succeed.

So, here's the backstory:

When I last wrote I had needed to increase my antidepressant (imipramine) to 70 mgs, which was a high dose for me since I was sensitive to it and got manic rather easily. I never went off that dose. Between January and July I tapered totally off of Depakote, amazing everyone. My last dose of Depakote was July 12, so it was totally out my bloodstream about the 17th. On the 24th I lost my job.

Depression hit hard that time and I went up to 80 mgs, then 90. The doctor said I could try 100 mg but that I probably wouldn't tolerate it. She was correct. After a bit 90 mgs was too much, so I backed down to 80. 80 mg helped the depression, but caused such severe constipation that I was hearing way too much about "colonoscopy prep", "suppositories", etc and I was taking way too much medication for that part of the body.

That left a big dilemma. I could back down to 70 mgs and hope it worked, but that meant never having anywhere to increase the dose if needed, and it generally is needed in the fall. Or I could change meds proactively. That's what we decided to do and I tapered off the imipramine for a month. The only option I had left was an MAOI and there couldn't be a bunch of imipramine in my blood when I started that.

So I did that and spent last week in the hospital getting onto the new med (Emsam; it's actually a patch) and being safe while coming off the old one. In the course of things a lot got changed around. So, at the moment I'm taking:

-Emsam, 1 patch daily. 6 mg/24 hours

-Nuvigil 150 mg daily

-Amelioride 10 mg daily

-Synthroid 100 mcg daily

-Seroquel XR 600 mg

-Lithium ER 300 mg

-Klonopin 1 mg twice daily

-Vistaril 50 mg once daily as needed (meaning once daily)

-Vitamin D weekly

That's a big difference, since when I went to the hospital 2 weeks ago I was taking:

-Imipramine, tapering

-Lithium 300 mg

-Seroquel XR 300 mg

-Synthroid 137 or 187? Can't remember mcg

-Amelioride 10 mg

-Nuvigil 150 mg

-Ativan PRN (which was pretty frequently the last few weeks of this)

So, that's life today.

Up-to-date

In July I learned about a new formulation of Seroquel (Seroquel XR) that allegedly decreased sedation in people on high doses, which was me. I convinced my doctor to let me try it in August.

The dose was supposed to be the same, but in 2 pills rather than 3. The doctor repeatedly reminded me to be careful of that. Immediately I took 3 pills, a technical overdose. I slept all day the first day and thought it was just an adjustment. The 2nd night when I started feeling odd I realized that it was too much. I tried, for the first time ever, to use the emergency pager and the resident didn't answer. (Scary huh?) So because I was falling asleep I looked it up, found someone had survived much more than I took, and went to bed and called off the next day.

(That may not be the preferred method of handling such things, but in my case there are circumstances making it more ok. First, where I live is so far from a psych ward that getting to a hospital qualified to check me out would be a mess. Second, I am a healthcare worker and well-versed in meds. So, maybe don't do the same, but it's what I did).

I kept trying to get back on a full dose after a day or two off to let my body clear it, and every time I went back to the old dose all I could do was sleep. So I decided to cut to half for a week, then deal with the sleepiness over the weekend. I figured my mood would change but I could handle a few days.

It turned out that I was totally wrong. I felt good on the lower dose. So, after checking with my doctor, I left it there for the remaining time until my next visit to her. And there it remains, 2 months later.

However, I have had work issues. Big ones. And so I've increased my imipramine dose to 70 mgs, close to the cut off for me based on other years.

And my regular doctor added more meds for constipation (this time Senna, plus 500 mg of colace (that's a lot). I hurt my back so I have a PRN muscle relaxant but I think it makes me throw up (I did the first time I took it and not before nor after). And I currently have a UTI so I'm on Cipro.

So, the current med list is the same number of pills, but slightly less punch. I'd not even remembered until the family doctor the other day that I'd been on 650 mg of Seroquel at one point and now am at 300; that jump seems even bigger.

This is a major point as in all my years on meds I've NEVER reduced the dose of anything significant (my antidepressant goes up and down tiny increments most people wouldn't notice, that kind of thing). Not to mention that I've stayed really good for a really long time (11 months!!!! with only 2 episodes and neither that bad)

Time passes so fast now

Ever since Seroquel finally fixed my life time passes so much faster. After literally years of monthly medication changes, now I don't even think much about them.

At this point I am taking 33 pills, with 2 of them divided so that it feels like 35, per day, plus anxiety meds PRN (maybe 3 per week). When you gag like I do, that means it IS 35. Just today I ate breakfast, then vomited as I brushed my teeth with no warning whatsoever. It's impossible to know when it will happen.

I am doing very, very well this way. The only real problem is morning sedation. Often I'm awake at 8:30 or so, but cannot function until 10:30 or 11. There is a new version of Seroquel out which is extended release and I read that it is supposed to help people on a high dose (me!) to have less morning sedation. I'm hoping to start that soon; my doctor was doing some checking because changing anything with me is touchy, even though at this point something needs to be done.

Otherwise, I still have extra weight and it's all distributed funny so that I get really upset about how clothes don't fit, and I am still suffering with terrible constipation no matter what I do, but considering the high doses of the meds I'm taking I am doing great.

I hope it's another 4 months before I have to update here again!

Update

It's been a long time since I posted here. That's mainly because for the first time EVER my meds have essentially been the same. I've acquired some more med issues and so I guess it is time to update.

In January I changed jobs. When I went for my pre-employment physical I complained that the Miralax added in December to help with constipation was not really working. The doctor noticed my lips were the kind of dry that means really dehydrated and became concerned. I had to answer a number of questions about my pee, and give a urine sample, and left with a diagnosis of diabetes insipidus. This is a direct result of lithium and means that my kidneys are not concentrating my urine anymore, so that I pee out everything I drink rather than my body having water to work with.

After a lot of doctors talking to other doctors (there are now 4 involved in this mess) we came to the conclusion that letting me take lithium is important as long as possible. So I started taking a diuretic called amelioride which controls how much I pee. I cannot express the relief at peeing with half the frequency and much less the volume as before. One of the tests I did involved a 24 hour urine collection, and I gathered 3 times the normal amount. I can't imagine how much that would have been without the amelioride, which I now take at a higher, more effective dose.

Last month, in a truly momentous occasion, my psychiatrist allowed me to LOWER the dose of my anxiety med because I'm doing great but am too sedated. I have never lowered the dose of anything because I was doing well. Six years from starting lithium I am getting better.

I am taking I think 32 pills/day still. I don't see that changing for a long time, if ever. But I can't imagine anything better than feeling so good at last.

More change

I saw my family doctor yesterday and my hypothyroidism has worsened. Plus I needed real treatment for the constipation which has made my life miserable since starting Seroquel. So I once again have revisions.

Current meds:
Depakote 3000 mg
Seroquel 650 mg
Lithobid 300 mg
Atarax 30 mg bedtime, 10 mg twice daily
Ativan PRN
Imipramine 50 mg
Colace 400 mg
Miralax
B vitamin complex with Vit. C and zinc
selenium
Synthroid 88 mcg MWF, 100 mcg other days

Plus dried fruit daily and of course lots of water, which is just a part of my life. I would drink lots of water even if I weren't trying because of all these meds. Who knew fruit could be a prescribed treatment?:)

Another month, another change

Due to lingering depression and Seroquel not filling the gap, I'm going back on my past antidepressant, imipramine. I'm also taking a larger dose of Colace. In 2 weeks, after the imipramine is back to its old level we'll re-evaluate.

Current med list:

• Seroquel 650 mg
• Depakote ER 3000 mg
• Imipramine 25 mg, to go up to 50 mg
• Atarax 30 mg bedtime, 10 mg during day for anxiety
• Ativan .5 mg PRN
• Synthroid 88 mcg
• Lithium 300 mg
• B complex stress version (includes Vit. C and Zinc)
• Selenium
• Colace 150 mg (may increase to 200 mg)
• Provigil ON HOLD

Yikes, that thing is long.

As always, refer to initial post for my med history.

Tongue Thrusting

In response to anonymous, who wrote "Hi, Read from your list that you have tongue thrusting from taking one of the med in 2004. How long does it take for you to recover from the tongue thrusting? would like to know as my friend is suffering tongue thrusting from a medicine side effect":



your friend needs to talk to his/her doctor soon. This needs stopped or it can be the beginning of a more permanent issue. There are several bad things that can occur. At best your friend is suffering when there are treatments that can be tried. At worst these things can progress and he/she could face some scary medical stuff. Rare, but I did see one guy with it. I believe there are meds that can help; in my case I went off the culprit because I was doing better anyway. It did go away but it took time. The worst was over pretty quickly, as I recall. But then the rest gradually went away.

I wish I could remember more specifically, but it was many meds and several years ago....

Monthly update

I'm still increasing my Seroquel dose. My doctor would like to see it level off by 600 mg/night, but is willing to go up. I'm currently at 400 mg. I need to increase that, probably tomorrow. I'm off imipramine totally.

I added OTC Xantc due to heartburn from the Seroquel and am taking a few days worth of hydrochlorothiazide, a diuretic, to try to get my legs back down to human size. They are not that big in relation to a few years ago, but they are uncomfortable. Even my arms have enough fluid in them pushing down causes a dent. This is important because as long as I'm this swollen I'm at risk for hypertension. I really don't wnat to take meds for that again.

So hopefully that's all the major stuff for a while.

Slight Change

It feels like everything in the world has changed, but really I just keep increasing the dose of the Seroquel. 250 mgs and counting.

Also, I no longer take imipramine. I'm not sure how I feel about that because I was sort of psychologically dependent on it (it worked! For a long time!) but the time had come to not risk it causing mania.

Otherwise, see the last entry.

Changes

It's been a long time (for me) since I started a new med. Over the last few weeks mania grew and grew and grew. We tried using a quick hit of low-dose Risperdal, but it was too low-dose and I started having a reaction to it so the dose couldn't be increased. Too bad; I think 1 mg would have done it.

I am now on Seroquel. I'm off work for a while to adjust. I have a lot of leniency in how to get to the desired dosing, which helps. I am currently planning to stay at 100 mg at bedtime for a few days to see what happens as my body adjusts, then probably I'll add an am dose. Ultimately we're going to try to switch some of what my other meds do to Seroquel. So far, so good (day 2).

Current meds:
Seroquel 100 mg bedtime
Depakote ER 3000 mg bedtime (5 whole pills, one cut to allow immediate release). Level 127
Lithobid 300 mg bedtime
Ativan PRN (not taken often but have used .5 at bedtime some lately)
Atarax 10 mg BID, 20 mg bedtime
Synthroid 88 mcg (all messed up because I've slept through doses)
Provigil (firmly on hold until not manic)
Imipramine 25 mg
Zinc
Vitamin B
Selenium