Fuck to the yes!!

I haven’t gotten a chance to post about my doctors appointment on Monday. It went fucking fantastic. When I was at my neurologist for Botox, I asked him about trying a different opioid. Not necessarily more, but something different. I’ve been on Percocet for 20 years, and I really don’t think it’s doing much in the painkilling department anymore. He said he didn’t really have any objection, but he’s never prescribed anything other than Percocet so he wasn’t really comfortable. He suggested I go to my family doc, and if my family doctor turned me down, to come back and he would do some research. Which is totally fair.

So I call my family doctor, to find out that he’s out of town on vacation and he has a locum covering for him. So I explain the situation to the receptionist, who’s known me for 15 years, and she suggested I go ahead and come in. So Monday afternoon, I went in. It took like 40 minutes before the actual appointment because they just moved to a new clinic space, and so they were taking everybody’s height and weight which was less than I thought, so that’s good, and entering everybody’s drugs into the computer. I didn’t know the dosage of most of the drugs I was on, and I offered to call the pharmacy and find out, but the nurse or nurses aide or whoever said it was fine and they would just reconcile it later.

Anyway, the locum was a young woman and I just explained exactly what I was hoping for. She offered me a stronger dose of OxyContin without the acetaminophen, and I said that I’d taken more Percocet than you are technically supposed to in the past, and I was interested in trying something new. Toradol does nothing for me, and Advil works really well, and they’re both NSAIDS. So it seems reasonable to me that a different drug in the same class might work better for me.

She said that I clearly had a long and refractory history and much as they like to not give opioids out, it seemed appropriate in my case. Then she offered me a referral to a pain clinic I’ve never heard of, where she did her residency, where I guess they do lidocaine and trigger point injections. So I left with a prescription for a summer’s worth of Dilaudid, and a pending referral.

I had a horrible migraine the next day, tied to the weather, so had a chance to try it and it’s amazing. The only problem is that it knocks me right out. Which is OK, I don’t really want to be conscious during a migraine, but it doesn’t mean that I won’t be able to work if I take it.

So I won’t have to buy sketchy drugs off the darknet after all, ha ha.

Two days in the life.

8 am – Leave to catch the bus.
9 am – Arrive at the hospital to get ketamine at nine.
12:15 pm – Allowed to leave (They want you to stay two hours after your treatment ends)
12:30 pm – Catch bus home
1:15-1:45 – Feed cat, and myself
1:45-2:15 – Nap for half an hour (feeling exhausted)
2:20 – Leave for neurologist appointment @2:45
3:10 – Leave neurologist with a face full of Botox
3:15 – drop triplicate prescription off at drugstore
3:20 – drive to work
3:45 – arrive at work
4:00-5:45 – Super important work meeting. Boss asks if I can get the work done by the end of the next day. I say of course.
5:45-5:55 – I had a migraine onset during the meeting, so I need to get on top of it now. Ransack my desk and purse and realize I don’t have any triptans (migraine specific drugs) with me. Shit! Take a Tylenol 3, a stiff shot of CBD extract and start drinking a Pepsi.
6:00 pm – Start working on stuff for Super Important Project Deadline from the meeting. Since I didn’t get to work until almost 4 o’clock, I’m going to have to stay here all night. Besides, the idea that I could wake up with a migraine tomorrow and not be able to make it into work is stressful, so I want to try and finish this tonight.
6:30 – Symptoms getting worse. Give myself a needle full of Gravol.
6:45 – So drowsy! I start drinking a Pepsi.
11:55 pm – I’m done my work, hallelujah!
12:15 am – Stop at pharmacy to pick up prescriptions.
12:30 am – Arrive home. Check email, get into bed and try to unwind.
1:30 am – Fall asleep

Wednesday:
10:00 am – finally manage to wake up after multiple alarms. Soooo tired.
10:45 am – I gotta have a shower.
11:25 am – Leave for 12:00 pm massage appointment.
12:00 pm – The Botox made a noticeable difference. My face and head are much more relaxed, but my neck shoulders and upper back are a crunchy mess. The massage is more painful than relaxing, but I know it will feel better later on.
1:30 pm – Arrive at work and stop for a flat white (2 shots espresso) on the way.
1:35 pm – Arrive at my desk. Take 2 Dexedrine and hope it will help me be alert.
2:35 pm – Call to reschedule my 4:00 pm doctor’s appointment. The idea of driving to it and it eating up work time is stressing me out.
6:00 pm – I should be working until 8:30 at least but I’m just tired and fried.
7:30 pm – Give up and go home. It’s just been “presenteeism” for the last couple of hours anyway.
8:00-9:00 pm – Pay bills, look up upcoming pay dates, update budget
9:00-9:51 pm – Organize and refill meds, so I have some in my purse, some for at work and some for at home.
9:51-10:15 pm – Eat something.

So… where is the time for fun? Or housecleaning? Or cooking and packing lunches? Or socializing? I thought maybe if I kept a diary I’d see where the time was going, but it sems like it is work, migraine, or doctor’s appointments 24/7. I think having chronic migraines in the summer is depressing in and of itself.

Some progress.

I saw my neurologist today and got my Botox injections (finally). I asked him what he thought about the steroids and he thought 50 mg was enough to use one time to knock a migraine out, that they didn’t have to be “stepped down” at 60/40/20 over a few days like I’d read. So he prescribed me some more prednisone. That’s fine.

Then I asked about a different opioid. He said Percocet was the strongest he prescribed and I said “not stronger necessarily, different” and he said that he actually never prescribed anything other than Percocet so he had no problem with my having Dilaudid (I mentioned they came in 1 mg which would be less than a single Percocet) but could I ask my family doctor for it, and if he (GP) said no he would do a little research.

So I called my GP’s clinic and found that my GP is actually away and there’s a “really good” doc covering for him. I told the receptionist, who has known me for 15 years now, that I needed a prescription that my neurologist had no problem with me having but wasn’t used to prescribing himself, and she didn’t think it would be a problem. So I’m going there tomorrow for that.

In the meanwhile once I got back to work I started having a truly massive headache and realized that I didn’t have ANY triptans with me or in my desk – not a Frova or a Zomig to be found anywhere – so took some CBD extract, an Advil, a Tylenol-3 and a needle full of Gravol. I could technically work from home but I’m afraid I’ll only sleep because my head hurts so much. Wish me luck.

Migraine & suicide risk.

Migraine.com article about suicide risk

After following the groups for two years, researchers discovered that participants with Migraine and severe, non-Migraine headaches had a 4 times greater risk of attempting suicide than the subjects without Migraine or headache. The level of pain played a role in attempted suicide as well – study subjects with a higher level of Migraine and non-Migraine pain were at greater risk for attempted suicide. In fact, each time the pain intensity scale went up by one point, the risk of attempted suicide went up by 17%.

So tired. Weary.

I missed work Monday because of a migraine then agreed to do a little side project yesterday (I’d like to have some spare dollars so I can get massage therapy and wait to be reimbursed in the insurance company’s sweet time) so that’s two days of work to make up over the weekend. It’s just this horrible cycle of always playing catch-up, and then I’m not balanced and not relaxed, which just makes it harder.

It takes so much time to go to the doctor/ RMT/ therapist/ neurologist/ psychiatrist/ hospital/ pharmacy and work and have migraines. I just don’t see myself as able to keep up a full-time job for much longer because I’m weary on a soul level.

Wednesday I went to work, booked a doctor appointment with my GP for 5:15 to try and get a referral to a dermatologist because my acne is worse than it was when I was a teen. I had to wait around for a half an hour which I spent washing my make up off so he could see the severity of the situation. When he came into the room, he said he was so sorry to hear that I was having such trouble with my depression. It totally dis-combobulated me. I was all ready to play the part of his patient who hadn’t seen him in months, and was coming in for a referral for my hormonal skin, no big deal. I don’t know if he looks up people’s electronic medical records before he sees them or if the receptionist does that as part of the chart or what. And I get that it makes sense, but it just totally changed the tone of things.

So he basically diagnosed me with bad skin due to stress. I’m breaking out on my face, and on my cheeks and joy line instead of my t-zone where I used to. Then I have huge patches of itchy dry eczema of the come and go on my hands and chest. So he prescribed me some kind of antibacterial cream from my face and a stronger steroid for the eczema, and I didn’t really have the presence of mind to push for referrals so I asked him to write me a prescription for migraine drugs, while he was at it, and said I would be back if it didn’t work. Then I went to the drugstore. And waited half an hour for it to be filled. Then the pharmacist said my total was 120 something dollars, and I just about had a heart attack because I just given them my new health benefits information with the card that I just got that day, which was supposed to give me 100% coverage. So the pharmacist figured that the plan wanted me to get generics, and they didn’t have two of the medications so I’m gonna have to go back to get them tomorrow, and so it was like 8 o’clock by the time I got home so I microwaved a bowl of peas and checked my email and went to bed.

Yesterday was the side job, so I had to get up super early so that I could catch the bus to go downtown to be on time, and I did, and I worked all day, and then I tried to finish all the paperwork at the end of the day but I was too burnt out. So I stopped working at 6:30, and went and caught a bus, but the transfer I needed was only running once an hour so I ended up walking most of the way home and didn’t get home until eight, just like the night before.

Today my skin just looks fucking awful, because I put Differin and the antibiotic cream on it which was obviously not a good idea, so I still have the bad complexion I had before, as well as a couple of dry red patches of skin that makeup just wouldn’t stick to. It was just sliding off and pilling and making my face looks super patchy. It’s like the worst make up day I’ve ever had. So then I started getting anxious that I couldn’t get my face into any kind of shape to go to work, which just made me get shaky and sweaty. So I went to work, stopped at the parking office to be told that it was too late to make any changes for this month, and didn’t actually arrive to the office until 10:30.

I had an appointment to see the hospital chaplain at 1, so I only got a couple of hours of work in before I had to leave. I wept at him for an hour and a half. I didn’t think I was that sad, but I started crying practically as soon as I saw it down. I guess it just takes so much energy to hold everything in and put on a good show at work that I’m not really in touch with stuff during the day.

So it was 3 o’clock by the time I got back to work, and I still had five hours to put in. It was just so shitty. I was totally unproductive and I felt just bleary and puffy and teary-eyed and tired. I managed to get a second wind a little bit toward the end, but I didn’t really put in a full days work. So I got home it shortly after 8, opened a can of tuna, and that brings us to now. I’ve been out of the house for basically 12 hours a day for one reason or another, and by the time I drag myself home i’m tired. There’s nothing in the fridge, except ketchup, so I have to go to the bank, then grocery shopping and back to the pharmacy, and I need gas, and I’m going to have to do some laundry before next week, and meanwhile I have to work two days out of this weekend, and probably have a migraine as well. It’s just so fucking exhausting, doing it all myself, and the cried out, wrung out, puffy eyed feeling doesn’t go away with a cup of coffee or even a Dexedrine.

I know in my head that most people that have this level of migraine consistently aren’t holding down a job at all, let alone working full-time, and I know how much time it takes for me to try and manage having a physical and mental illness, but still have this vague feeling that I ought to be able to pull things together somehow, there’s no point just stumbling through the days like this.

Another summer like this…

Today was fucking awful. I was tired from the get-go, and I was supposed to have an intake phone call for this counselling centre in town, but the meetings before ran over by half an hour so I just got a voicemail from them, and I’m going to have to rebook. I was supposed to go see the chaplain at the hospital today, but had to call him to cancel because my boss wanted to wrap a project up by the end of the day. So all of that is OK, but then by noon I realized I was starting to have a migraine. I logged onto the migraine app, and sure enough there were 10,000 people registering a current migraine in my city, so I knew there was something up with the weather because it seems pretty consistent; when there’s no weather happening there just seem to be 1000 or 2000 people having one at the same time, but then when the barometric pressure drops or a thunderstorm is going to happen it goes up to 10,000 or 20,000. So it’s like a confirmation that whatever sort of or I’m experiencing is actually a migraine and I should medicate the heck up right away.

 So I took a triptan. And an Advil. And a Tramadol. And a naproxen. And went to Starbucks. And drink some water. And sorely wished that I had some muscle relaxants at work. So I was feeling clammy and sweaty and confused and having to work on this project that everybody was practically dancing with impatience about. It just sucks because there’s no real way to make yourself feel better when you feel like that. I can go splash water on my face, or take some drugs, or use an aromatherapy roll-on, or whatever, but I’m still going to feel like a clammy sweaty mess.

So I did manage to finish, but I had to cancel an actual social plan that I had for tonight. I was going to go out for sushi and then do some crafts with a friend and I had to email her and explain that I just couldn’t. She understands and we’re going to reschedule for next week, but it just feels like now and last summer, when my mood is decent and I actually feel like working out, and being social, and doing things, I don’t have the capacity to because I’m getting freaking migraines all the time.

Last August I had 15. That’s the cut off for chronic migraine versus episodic migraine. And it basically means that I’m just dragging myself home from work, doing the bare minimum of emptying the litter box or whatever, and going to bed. If I get a migraine during a workday like today, I’m not gonna do anything after work. If I get a migraine on the weekend, I’m pretty much going to spend the day in bed and then get up in the evening for two or three hours and then go back to sleep.

So really it takes up as much time as having a second part time job would. And when I think that I’m doing the equivalent of working 50 or 60 hours a week, I think I’m coping really remarkably well. If I was a workaholic or how to high-powered career, nobody would expect me to be Miss Domestic and have a bunch of hobbies and social time. But then what is the point of working so hard when the best case result is that I get to tread water and keep going?

Trip to the ER.

I missed work Thursday and Friday because of a migraine. Friday early afternoon I was wondering if I should go to the hospital because I hadn’t gotten any sleep Thursday night and nothing I’d taken (Zomig, Percocet) was touching it. I always put it off because I don’t even want to fucking move, let alone move to somewhere I will have to open my eyes and where it is bright and noisy.

Anyway, just before 2 pm I gave up and called an Uber and staggered into the ER. They took my info and asked me to take a seat and I said “Can’t I just lie down on the floor?” The admitting clerk was like “You don’t want to do that, the floor is dirty, but no you are not allowed to. Security will “help” you up if you do.”

So I started to cry. I couldn’t help it. Went and took a seat in the waiting room and sniffled under my sunglasses and hat. It was only a minute or two before they took me back – to a recliner – and the nurse gave me a gown and started rounding up IV equipment. She started it on the first try and said that way we could start the meds as soon as the doctor saw me.

It took a little while for him to come but since I was now in the dark laying down with a blanket and with relief in sight it was so much nicer. He came around, didn’t shine that light in my eyes thank goodness, listened to my heart and asked if I could bend my neck and follow his finger, then suggested some Toradol, Maxeran, and Benadryl by IV with some dexamethasone (steroid) to top it all off. Sure, I said, that sounded fine. I don’t think Toradol does anything for me but, whatevs.

Anyway, I felt better. came home, did nothing. Got up today and ran an errand, went to work, ran another errand, went back to work and just felt bitchy! I ate two chocolate bars in a row and I couldn’t concentrate and I felt so nasty and then it occurred to me that I was having a migraine aura. So I said fuck it and came home.

One of the errands was a Genius Bar appointment at the Apple Store, where it turned out that my iPad was completely pooched but luckily still under warranty, so I got a new one and have been letting it install software and get set up since I got home. I have a phone date with one of my best friends on the other side of the country at 8 pm which is awesome but I am feeling all overwhelmed with chores so I guess I’ll go start a load of dishes and what not.

I gotta take some supplements to work (like Coenzyme Q-10) and stuff because I would do anything to make these migraines less bad. Yuck. I was reading some papers about how migraineurs are more likely to self-harm and have suicidal thoughts even when you control for other things like psychiatric diagnoses and it’s because it sucks. Waking up and being in awful pain and being like “Oh, I guess I get to lie here in pain for a day, I can’t read or do anything distracting because moving or opening my eyes is hell, so I’ll just lie here for 12 or 16 long hours.”

Summer is coming

And I don’t know if I can stand another one like last year. Today’s pretty much the first day I’ve been migraine free in about a week and a half. I was flat out on the weekend, and I remember thinking on Sunday that I should get up and do some laundry or something because I didn’t exactly have a headache anymore, but I sure as hell had a headache hangover. I was trying to remember what I did last night, and of course I worked on my taxes all evening. How fucked up that I couldn’t even remember what I did 24 hours ago. Anyway, today I went to work, went to see my psychiatrist and cried talking to him the whole time, and he gave me a new drug to try, I don’t remember the name of it but it’s an antipsychotic that’s also approved as an add on for major depression and adults.

Then I went back to work, and started feeling overwhelmed and having difficulty concentrating. And so I basically was just sitting there looking at the screen for about an hour, and then I had my appointment with the counsellor and I cried really hard at him. I was talking about how I don’t get the point of being all anal about opioid addiction’s, because I don’t give a shit if I might get addicted to opioids in a couple of years, if I’m gonna fucking kill myself right now because I can’t stand the thought of being in pain for more than 15 days in the month.