CheshireCat: Intro, it's complicated

[CheshireCat]

A big hello to anyone reading, I'm grateful for a place to find answers and to log what's going on in the process. Happy to be here and to find resources.  

 

I'm coming off of lamotrigene and Halcion, just recently started (an apparently too big of) a taper. 

 

Relevant hx: After major surgery involving my CNS (major neck surgery/fusion)last year, my brain has been "worse" - with sx of a major concussion.   (I had a major concussion in '99 so I know how that feels)   My neurosurgeon denied any anesthesia/apneic complications at both my 3 month and 6 month checkups, when I asked him why I felt as if I had a major concussion post-/intra-operatively- my memory is worse than ever, things that *should be* general knowledge in my brain area are not accessible for recall, just struggling with real life functions,  very poor cognition, (worse than it was to the point I don't even want to tell anyone, because how my mind works/thinks is scary to me) like I'm inebriated and can't think or focus, can't remember recent conversations- even of earlier today- and have zero focus/ability to concentrate. Constant pressure in my head, feeling really dizzy like I've been spun in circles and then stopped, vision changes (bad eye is now the good eye and the good eye is bad) seeing double, have zero filter when I talk and things don't make sense, can't recall simple words and frequently mix them up. Vertigo. Dizziness. Lightheadedness. 

 

That was Before I started weaning off of meds.

 

 I've recently (3 weeks ago) read about post operative cognitive disorder and 2 wks ago saw my Dr (Dr H) review past brain MRI's and he is at a loss after several bloodwork panels. Referral made to out of state University Hospital Neurology dept.  He mentioned low blood sugar but nothing otherwise remarkable with labs.   He brought up "medications I take contributing to these things-- that the confusion and poor cognition been an ongoing complaint.  I also read on drug interactions between each of the meds listed and realized this may be a huge part of the cognitive problems and CNS issues, so lets stop taking what's not working! 

 

I've been on lamotrigene for 10 years,  150mg Daily for the past year anyway.  I've been talking Valium 5mg at bedtime, as well as Halcion (triazolam) 0.25mg-@HS for probably closer to 14+ years and don't feel it helps with sleep anyway.. It has been ineffective. Also taking an antihistamine at bedtime for allergies... But it potentates the effects of the other meds. Also pain medication A few times a week.   

 

Lots of autoimmune, neuroimmune diagnoses and chronic, debilitating nerve, muscle, skin and joint pain that adds to the depression. I won't go into all of that. 

 

*Lamotrigene brand change 6 weeks ago Really messed with my brain and systems,  so I had to go from that 150mg tablet back to the "good" brand 100mg tablets I had an extra bottle of; (The "good"  brand I used has been permanently discontinued.) So- 4 weeks ago my dose was cut to 100mg, trying to get out of the position of needing this med since it has become impossible to get the brand that has been effective.

 

I started weaning from the Halcion 2 weeks ago, cut the dose in half after seeing my doctor and reviewing needs and MRI's etc. 

 

Both of these were done as the pharmacist and doctor instructed but I'm seeing much of the withdrawing sx mentioned in this website-  And it is only compounding the feeling that I'm completely losing my mind that I have dealt with post-operatively since about March 2018. 

 

Low blood sugar has been ruled out as a causative factor for poor cognition over the past 2 weeks.

 

  NOW ....I'm noticing

worsening cognition, memory and concentration, back pain and muscle spasms(back locked up in me- can't walk/sit past 2 days), fatigue is worse, no motivation, but also anxiety and a need to get out of the house, (manic?) do something besides hide in bed half the day feeling no purpose. The sx wax and wane a bit, afternoons are the worst.   I see these are common withdrawal reactions after some browsing of this site, that helps me feel like I'm not totally losing my mind! 

 

I appreciate what this site offers- I'm glad to find it. I'm seeing information here that I know it's useful, but I'm already a month in on my lamotrigene dose decrease, don't know that I want to go back up on that. Do I????

 

 I know I've only skimmed the very surface of material here, can't absorb any more right now. At least I've found help. I think.  

 

HS:

Lamotrigene 100mg 

Valium 5mg 

Halcion 0.125mg

Clemastine 1.34mg 

 

Thx for reading... Cat from USA

[CheshireCat]

I'm still piecing  this together after last evening's discoveries here.  It occurred to me that my lamotrigene dose may have been adjusted twice this year, up by 50mg in June, and down by 50mg as described in above post. I also has switched the lamotrigene dose to nightly, only a week ago, to determine if I could feel more even cognition throughout the day, thought maybe the lamotrigene at night might make for better daytime thinking-- I'm not certain it has made any difference, very little if any at all.  Split the dosage perhaps?? 🤔

 

I have also wondered about the cumulative effects of pain meds they had me of post-surgery a year ago, fentanyl for approximately 6wks as well as oxycodone and muscle relaxers, plus diazepam q12 hrs, and what effect extreme pain has on the brain. More to research. 

 

After writing above post   6hrs ago) I opted to take another half a tablet of both lamotrigene and Halcion, for a total of 75% of what my recent "normal"  doses were of each, wondering if maybe that would help my poor brain, maybe I'm not too far into WD to offer relief to my CNS? 

 

Awakened and felt oxygen deprived, a few deep breaths were initially uncomfortable but much needed. I know resp suppression happens... That's probably from added meds in not used to. Didn't realize how much such a small difference would make. Hoping to read more and understand what's going on better with WD's today and where to go from here. 

[CheshireCat]

Afternoons are decidedly worse.  I took up playing piano again last spring (extending playing background) and know it is helping my brain function overall, but if I don't practice in the morning (by 11am) i notice my ability to focus, concentrate and read music is really hindered. I can’t get through music i played well that morning.  It makes that much difference. I also have no memory of the music theory I relearned last spring- it simply is not there to recall.  My teacher is surprised, I'm at a loss and don't think about it until I'm asked a question and realize I have no clue what the answer is- when it shouldn't be a hard question. 

 

Discussed my “brain” w Dr LC at CC visit today- he was genuinely concerned and offered a new rx to try for my focus, until i can be seen at University in a few months.  He was genuinely concerned. We discussed long term use of benzo’s and other meds, he has known me long enough to know something isnt right.  Gave me rx to help w focus, not starting it without reaerch.  I wasnt even there for my brain, but for low back muscle spasms! 

 

No change in cognition today.

 

Tonight-

lamotrigine 50mg,

halcion .188mg (approx)

clemastine 1/2 tab

valium 5mg

 

 

[CheshireCat]

Started phenteramine 15mg today 8:30am, had better cognition, could play piano this afternoon (usually that has to be done early when i can think/focus) and i could *Play* well! Despite my head feeling the pressure and feeling like thoughts were slow to process. More energy noted, better mood- have hope that i may be able to function. Was a better day w clear and optimistic conversation and i didnt isolate. 

No pain meds today. 

 

Tonight meds: 

halcion .188mg approx

valium 5mg 

lamotrigene 100 mg 

clemastine 50mg

 

i need a med box to stay on the same doses! I forget what I've taken. 

 

A much better day!

[ChessieCat]

Correct spelling of drugs:

 

clemastine

lamotrigine

Valium (diazepam)

Halcion (triazolam)

phentermine

[Altostrata]

Welcome, CheshireCat.

 

I see your Aussie cousin Chessie has already visited.

 

Were your drugs stopped prior to your surgery and resumed some time afterward?

 

What times of day do you take your drugs now, and at what dosages? When were any of them last changed, and how?

 

Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php
and copy and paste the results or a link to them in this topic.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature

[Giulietta]

Hello ChessieCat,

 

How are you today?

 

I am on briefly this morning - and one thing I want to let you (and others)  know is that lamotrigine ER (extended release) has become significantly more expensive for many (most? all?) US patients beginning in January 2020. I take it for epilepsy - a large dose - and this means I will have to change meds. this is more fun than a barrel full of moneys.

 

This drug will cost me at least $4,000 more a year. This is something I can't afford. Note that this is the extended release of lamotrigine - not short-acting. For epilepsy patients - the ER is a significant improvement in treatment.

 

I don't know if you still take lamotrigine and  if this might affect you even though you live in Australia.

 

Is it worthwhile to post about the increase in price to others - if so how does one do this?

 

Here's to a nice day for you and continued healing.

 

Giuilietta