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asleep at mal 9/09
An open letter to my doctor... 
11/11/10 0:32
asleep at mal 9/09

Hi Dr. W,

I wanted to send you an update prior to our appointment Monday for two reasons - first, I am hoping we can not waste time on things that are already no-gos, and second because I'm struggling with the intermittent memory loss, and I don't know if I'll get all this right.

Let's start with the new medications we tried after the last visit:

Cymbalta - I took this for about two weeks, and tried to cope with the side effects (blurry vision, shakiness, difficulty sleeping) but the shakiness it caused kept getting worse, until it got so bad it was causing migraines (I have TMJ) due to me have to keep my jaw clenched so my teeth weren't chattering. The shaking was so bad I couldn't sew or cook or write; I think SNRIs are a bad idea for me.

Soma - seems to be ok at the increased dose; I'm taking 3 or 4 tablets a day, and it's brought my base pain level back to something I can cope with - I've even had a few days at 5 on my pain scale which is awesome.

Xyzal/Allegra - no, no, no. I took one Xyzal, everything got fuzzy, my heartrate spent hours at 120bpm+, the typical out of body reaction I have with antihistamines - "And as an fyi, using a computer when you're watching yourself from the corner of the room above your right shoulder is challenging. #almeds", didn't have my heartrate return to normal or the hyper etc go away for almost two days.

Ambien - another no. It knocked me out for about 3 hours, then I woke with a migraine at a 10 on my pain scale (10=nausea, but not quite throwing up) which lasted for about 36 hours (I tried it twice, both times the same reaction).

Hydrocortisone - ok, but at a lower dose - 1 tablet 3x/day - more than that and it makes my insomnia much much worse, and I'm hungry all the time even on the lower dose.

Medication that carries over from 1st visit or before:

Cytomel - I think we've got this right, my weight is stable, and my energy is getting back toward normal (ie: tired but not to the point of uselessness), nails are growing and hair has stopped falling out in massive amounts.

Fludrocortisone - Dr. S had me on this because of the hair loss and skin "thinnness" - I'm taking 1/2 of .1M tablet each morning, I was on this prior to the last blood work from her - need refill if I'm to keep taking it.

Adderall - 1/4 tablet per day; it helps my concentration and energy levels, but does nothing for the memory loss (which was the original hope - but the memory loss is not "Fibro Fog", the neurologist diagnosed it as Transient Global Amnesia).

Flexoril - every night at bedtime, no longer making me sleepy, but it does help the shoulders somewhat - need refill.

Nystatin - maintenance doseage, per Dr. Wightman I have chronic systemic Candidia, this doesn't bother me, and when I stop taking it, I wind up with yeast infections and/or thrush; fluconazole, myconazole, clotrominizole doesn't touch the yeast anymore (azole resistant?) - need a refill.

Hydromet - for coughing, sore throats (sometimes I have trouble swallowing and things feel like they're stuck halfway down - thrush?) - I'm almost out, and need a refill.

Wiley Protocol - I had my period on day 5 of the second cycle, I think this is overriding my usual 10-14 day cycle as I haven't had mid-cycle periods either month.

Clonazepam - as needed for stress, I took my last one last Sunday - 30 pills lasted from September to November - I need a refill. (note: these were supposed to help me sleep, not so much)

Things I would like to cover this visit:

Sleep/insomnia - I need something that will put me to sleep and keep me there for 8 hours or so and which I can take daily or almost so. I'm currently back to the sleep cycle I've had since I was a kid - 4-5 days a week of at most 5 hours of fractured sleep including daytime naps, 2-3 days where my body is so exhausted it'll finally let me sleep for a night, which usually winds up being 12-14 hours. A lot of this is due to nightmares and light sleep from childhood; when I was in college they gave me Valium for a while, which helped, but then stopped working. Part of the problem is the off switch on my brain doesn't work well, even when it's just playing ugly memories over and over.

Pain - Soma has brought down my base pain level, but that doesn't stop bad days and occasional migraines. I would like to try drug A or B as needed for garden variety worsening pain and inflamation (I've taken both before without problems), and to have another prescription for drug C for the really bad days. "This sucks. I now understand what my friends mean when they talk about fibro flares. Usually I wake up knowing how good/bad my day.. will be. Not today. I slept badly (~ 4 hours?) but Pain/numb was 7/6 this am. Then I laid down for a nap, and woke to pain/numb 10/9 I just requested T take my arms off at the shoulders so the pain stops. And I'm out of heavy duty pain meds. Hate this. #almeds"

Hyperosmia/Parosmia - this has been ongoing since I took and reacted so badly to Lyrica in late 2009. There has to be something that can help me - my food choices are getting more and more narrow over time, and a trip to the grocery store or a restaurant is a struggle which I often lose. Beef - usually ok if it's cooked with mediterranean or curry spices. Chicken - unless it's cooked in a tomato based sauce, a heavy curry, etc, it smells disgusting. Pork chops/loins/roasts - smell like rancid seafood regardless of the cooking method. Ham and bacon are usually ok. Cheeses - thank goodness they exist or I'd be starving, but a lot of them have gone from things I love to things I can't stomach because of the smell (havarti, gouda, feta, cottage, provolone - all no now). Fruit and vegetables - sometimes things that I like are fine, other times the smell of a cucumber or a sliced pepper can make me throw up. Ginger and one of my scented oils helps, but not enough - running out of the restaurant during dinner or sitting on the patio while someone else cooks because the smell made me throw up is wrong.

Memory - I'm still having problems with lost days, hours, etc. When I'm awake I try to make at least a few updates to my twitter (which is what the above quotes are from) so I can remember what I've done/thought/felt that day. I forget simple things (like how to properly fill out a check or copy an address), and I'm losing swathes of my life (I can't picture either of my grandmothers anymore, even though they both died recently, etc), and I've stopped writing pretty much entirely because by the time I get halfway done with a thought it's gone. All this makes getting a job difficult to impossible; I understand why no-one wants to hire me; the more stressed I am the worse my memory seems to be - I haven't made it through an interview without locking up on something important. I know this isn't your area of expertise, but if you have any suggestions I'd love them - the neurologist couldn't find anything, just said it's Transient Global Amnesia, it's not lyme or hiv or any of the numerous other things they tested me for, and it's not going away.

Oh, I guess I should mention the pain/numb thing - since 2009, I've been struggling with surface numbness in my hands, arms, and legs. I get bruises with no apparent cause; I burned myself repeatedly because I couldn't feel the heat of the pan, stove, etc; the same with cutting myself with scissors, seam rippers, knives. I try to track that every day; it seems to be manageable and at least partly tied to the pain levels, but I've also gotten better at coping with it to some extent.

As for my pain scale, a 5 is what I'd consider a great day - I hurt, but not badly enough to stop me from doing stuff on the computer or sewing, cooking, and going for a walk/working out all in the same day; a 6-7 slows me down, and I have to pick and choose what I'm going to do and take breaks between things. An 8-9 is enough to make me pretty sedentary; I usually watch movies or TV on my computer. A 10 is where the pain is so bad I'm nauseous and am wanting to remove the offending body parts, at 11-12 I'm hurting so bad I throw up and/or dry heave in between laying in bed trying to cope.

And finally, you kept my copy of the bloodtests done for Dr. S the last time I was in, which I'd like to have back so I can keep them for my records/medical history. I'd also like copies of the tests done for you, or help getting Quest to send me my results directly (I've requested that on both of the most recent tests, but have gotten nothing from them). I'd use their online VIP (very informed patient) system, only they need to have doctor's authorization to do that. Also, at a minimum for the month of December I'm going to be without health insurance, so if possible I'd like to get two or three months of prescriptions as one so I can pick them up before the end of the month and be covered until new coverage kicks in (no, I'm not happy about that, but I can't afford to pay the full rate out of pocket), and also to postpone the next follow up until January or February if my tests are ok.

The short version: some things are working, others aren't, but I like the new doctor, and he's working with me to figure out the best treatments for my body. Just getting me back on the correct thyroid medication has made a big difference, and I have faith that given time and money we'll be able to sort out more of the problems or find things that help. I need to win the lottery to pay for all this though.

And the twitter posts that talk about pain/numb, energy, sleep, etc are my way of keeping track of stuff - they're all technically on a 1-10 scale, but pain goes up to 13 as shown in this image. I consider any day where I start at a 5 a great day, a 6-7 is something I can work with provided I take lots of breaks, and at8+ it gets rough. I think the best energy day I've had in over a year is a 5 (10 being the highest), but between all the ways I'm broken I should be sleeping a lot more than I do, and even then my energy levels will probably never return to their previous highs.

Sadly, this took two days to sort out and put together, plus friends going over it to make sure I haven't missed anything. I would like my brain back please.
11/12/10 2:12 (UTC)
Have you tried Zanaflex? It's a muscle relaxer I take at night, and no matter how many days in a row I've taken it, if I take it with a Skelaxin it knocks me on my ass and I sleep amazing. I can give you one or two to try if you'd like and haven't tried them before.
11/12/10 19:42 (UTC)
I've never been given Zanaflex or Skelaxin. At this point I'll try almost anything if it'll help me sleep through a night. Thanks!
11/18/10 18:22 (UTC)
O, my, how we are similar. I'm so sorry you even had to write this, let alone LIVE it. I feel for you. I truly do, you know that.]]And funny. 5 is my best days too!!