#medication discussion

[delcat177]

Over the past two months, I’ve been intermittently searching for Prazosin side effects repeatedly because I’ve been experiencing weird brain stuff.  My focus is shot, I keep forgetting what I’m doing, I end up running videos back every ten minutes, I’ll leave lights and my computer/fan on, I don’t remember what I came into a room/opened a tab to do, I get bored super easily, I’m more impulsive, I’m talking my friends’ ears off all of a sudden.  None of this has come up as possible side effects for Prazosin, or for alpha blockers in general.

Today was such a mess (I fucking forgot I ate breakfast) I decided to do some deeper diving and check the mechanisms of alpha blockers.  They’re fucking norepinephrine antagonists.

I ran my symptoms by Megan and she confirmed that they’re all The ADHD Experience.  I don’t like to play doctor, which is why I’m running this all by my prescriber, but considering my symptoms started when I began taking a medication that lowers the chemical level that ADHD is treated by raising the level of, it seems pretty fukken likely I’ve gotten a mad niche side effect that mimics a specific disorder for the second time in my life.

I don’t at all regret trying Prazosin, it has been a massive positive step forward in my life getting rid of the nightmares, but I am very thankful that it is not the only medication that treats it.  I just...really hope I can find something that treats it as well.

I hate med changes and my brain is stupid Edition #231

Want to underline that this is something my brain is particularly good at, blease do not take this as a warning against any medication because my chemistry is uniquely fucked

[raraeavesmoriendi]

disability(ish)-related kvetching under the cut just to get it out of my system 🖤

the thing about migraines is that whenever I don’t have them I’m like “yeah I’m basically fine” and just go about my day

but then when I do have them, sunlight is a curse and even laying perfectly still on my favorite pillow feels hellaciously uncomfortable, like, “oh yeah, I guess this does count as a physical disability, huh”

and I never know which ones are going to be easy to treat and which ones are gonna be 48 hours of dealing with an ice pick in my temple, yknow?

I had a point today where I was literally like “hmmm maybe if I throw up what little food I’ve had all day this will be over faster 🤔” bc my mom and I both have the kind of migraines where sometimes you hurl and then immediately are like “you know what would hit the spot actually?” after a full day of being gross and miserable, but then I couldn’t even manage that

just. ugh. I have one of the easiest day jobs in the whole world, physically speaking, and occasionally something literally hurts so bad in the side of my head that I don’t even have the spoons to ride some buses and go sit at a desk for a few hours. what the fuck

and the way even normal things are suddenly stupidly hard!! like I’ve been meaning to change my sheets for days now (they’re not icky, I just stick to a schedule) but even dealing with putting a cover on my weighted blanket feels ridiculously impossible rn bc time = ouch and minimal effort = hurts and why bother when I’m just going to collapse in the dark and pray for swift unconsciousness either way

like, people in my family are in a panic over tylenol and liver damage, but goddamn, the way I’m throwing down excedrin over here has me thinking that’ll kill me faster than tylenol ever will. I don’t drink except socially, I don’t do more than a CBD gummy every few months, but god if I don’t spend days sometimes counting the hours between two excedrin pills and being like “well, I haven’t had too many yet I guess, might as well hit this thing again” like I’m in pacific rim and trying to fight a kaiju while my jaeger is making big red flashy lights and blaring worrying alarm sounds

and like, I’ve hit this thing with everything I have and it will not fucking budge. naps, hot showers, tiger balm, vibrators, total darkness. the only thing I haven’t tried is my ice pack and that’s bc my favorite one is at my parents’ house in texas, but god if I’m not about to go stick my head in the freezer and see if that helps any.

just. ugh. migraines are so stupid and unfair. why is the human body so fucking inept that something can just abruptly hurt so bad for days on end that multiple rounds of pain killers and two naps in one afternoon can’t even fix it. what do you mean this just naturally happens and I just get randomly debilitating pain thrown at me whenever my hormones decide I’m getting too comfortable. who’s in charge around here

[decompcore]

as an Adult™️ i feel kinda obligated to remind y'all not to go off your meds without discussing it with your doctor. i'm not trying to say you should put up with meds that make you feel icky, this is moreso about remembering to ask for refills bc getting back on certain medicines can be a pain

[sonofahurricane]

medicines in my bed right now

citalopram (2 bottles bc i take a pill and a half) 

otc ibuprofen (small bottle for no reason at all) 

excedrin migraine (which i opened last night during a debilitating migraine before realizing i’m not sure i can take it because it has caffeine) 

prescribed ibuprofen (which has more mg per pill) 

prescribed Big Time pain meds (haven’t opened yet) 

[elosunshine]

Medications Update

I know I’ve been MIA.  I’ve been very busy.  More on that later.  Also I’ll try and get over my not wanting to log on and update unless I can also catch up on those I follow.  Anyway...

I just got home from my first Lidocaine Infusion.  I was informed it could make me feel groggy/woozy.  Check.  A very pleasant (short lived) inebriated feeling without the possible liver damage, risk of vomiting/blacking out/ etc.  Especially since I do not socialize anymore and can’t remember the last time I went out for the night drinking with friends and got drunk.  I don’t find this a potential for abuse or addiction for me.  I was not informed about that these are possibilities.  Also, since IV lidocaine is administered in a hospital setting, harder to abuse.

Today was a low pain day - 3/10 before treatment began.  My headache decreased during and afterwards, then some throbbing started but I was dehydrated and the nurse asked when I had eaten last so gave me some crackers, ginger ale, and recommended I hydrate just like I would if I had a hang over.  But again, low pain day.  My back’s not hurting really.  My hip still isn’t happy, but I would say in the first 2 hours, my pain’s been reduced to a 1/2.  

My pain could continue to reduce over time as well.  

So far, my impression of IV lidocaine:  [relatively] Low risk for potential high reward.  (My nurse said she had a patient in earlier today whose pain started at 10/10 and by the time she left her pain was a 3/10).  I will potentially return in January for another infusion.  My pain management doctor wanted 2  month F/U but these appointments are in very high demand.  The person who scheduled my f/u suggested I call every day about cancellations.

After 1 month of low dose naltrexone at 1.1 mg QD I wasn’t really noticing any differences that I could attribute to the new medication, so my rheumatologist upped it to 2.25 mg QD.  I have finally had a couple headache free days after a long stretch of daily headaches/migraines.  Could this be the naltrexone?  Maybe.  When I see my rheumy next month, I’ll see if we can up it again to the standard 4.5 mg and see what happens.  I do feel like my headaches have been better overall, so positive stuff.

[elosunshine]

more FMS treatments

I saw my rheumatologist and learned about some new/new to me fibro treatments/ medication options for chronic pain:

There is a new medication that is finishing up clinical trials.  it is apparently 20x stronger (or whatever the appropriate adjective is) than Lyrica.  Don’t know the name of the drug.  Be on the lookout.

Naltrexone.  also goes by Low Dose Naltrexone.  (common brand names are Revia and Vivitrol) It’s an opioid antagonist.  Apparently, in very low doses (generally up to 4.5 mg vs. 25-50mg), its effect on the neurotransmitters in the brain and more science-y stuff can help with the way pain is processed by the brain. (I also read something about how it can help mediate inflammation in the brain).  My rheumy said in about a third of patients, there is a significant decrease is pain, in a third of patients there is no significant difference, and and a third of patients there is no effect.  So a 1 in 3 chance it makes a difference (similar to all the other Fibro meds) with no major side effects noted by any of the patients.  This, however, must be prepared by a compounding pharmacy.

I got a prescription for low dose naltrexone (LDN), found a compounding pharmacy who prepares this medication, and dropped off the Rx.  In his rush, my rheumy didn’t provided all the necessary info for the medication to be prepared so the pharmacist said they’d need to call to clarify the orders and then it should take 2-3 business days to prepare the med for me and then they will mail it to me.  Also, there could be a special co-pay because it’s a compounded drug and they’re supposed to let me know if that’s true with my insurance coverage.  Waiting to see what happens.  Will update when it does.

Apparently LDN can also be used to treat MS, Crohn’s, and other spoonie/chronic pain chronic illnesses.

DISCLAIMER:  Not all treatments are appropriate for all patients.  Talk to your doctor to find out if this is an option for you.

[sparreauxchirps]

Ugh

I think I figured out why I’m in so much pain/cannot control my mood states anymore... I think I’ve just gone completely resistant to Cymbalta, and I’m already at the highest dose, so... I don’t know what the fuck we’re going to switch to now.

At least I might know why my TN is acting up. Maybe it’s not getting worse, just needs a new medic-- oh who am I kidding, Cymbalta was literally the only medicine that even took a chunk of my trigeminal pain away.

Now if I can just manage to make it to my doctor’s office, we can at least start talking med changes. 

....I need a way to get my wheelchair out the van without me having to lift it. That’s all there is to it. But a wheelchair lift costs... a lot. And my van is already falling apart and.. we’re moving ... and I don’t have a job.. commission sales was a horrible idea because my anxiety just about jumped trew da damn window. 

ugggggggggggggggggggh