What's been going on (the medical version) part 1 of ??

[the_rck]

Most of the last several years has been my physical functioning declining steadily but in ways that either don't respond to normal treatment or that have treatments that that aggravate other physical problems I have.

Since 2016, I've lost somewhere between 70% and 80% of my hand function. I can still type, and I can still do some things on my phone, but my ability to do anything at all goes downhill as the day progresses and my pain levels get higher. I don't think that my doctor is actually listening about the hand function because she's chosen to focus on my blood sugar as the primary thing.

My hands, she says, will feel better if we get my blood sugar under control. I do not think that's how osteoarthritis works. I really don't.

Also, I think that, if she were actually serious about the blood sugar control, she'd have given me a testing kit years ago instead of just assuming that my a1C tells all. I can't tell what helps/hurts in the short term, and I'm prone to physical exhaustion and mental issues that are helped by food (exponential improvement from food relative to improvement by sleep or rest) and not affected by caffeine or by hydration.

I've asked about a testing kit, but she keeps putting me off. Right now, she's saying that only an endocrinologist can do something in that direction. I'm pretty sure that's bullshit because the prick the finger testing kits are pretty basic equipment.

I don't particularly want to have to prick my fingers, and the hand issues might be a problem, both the tremor and the osteoarthritis, but we need more nuanced information. I'd really like to know where my blood sugar is when I'm experiencing certain physical and mental symptoms.

I have tried both metformin and Jardiance, and both made me mentally non-functional. I couldn't think while taking either of them, to the point that I wouldn't have trusted myself to cross a street, not even with a four way stop light. No one outside my head noticed this functional decline, unfortunately, so I can't pull in witnesses.

Jardiance had the bonus feature of fits of rage provoked by things like Cordelia humming or Scott sitting in the same room where I was. The only reason there was no violence was that I was able to remember that I would hurt myself badly if I threw a punch or a book or even stood up and started screaming.

I also had the certainty that I actually didn't want to harm anyone else in spite of how very much I did want it.

I have tried duloxetine (aka Cymbalta). It went on the Never Again list after a single dose. My primary care doctor was hopeful that it would have an effect on my pain levels, and I discussed that with my psychiatrist. The smallest dose the stuff comes in is a 20 mg capsule. My psychiatrist had me have Scott split the contents of the capsule, trying to get me a 10 mg dose. It wasn't an easy process, so I probably had something between 8 and 12 mg.

Within half an hour of taking that, I had the worst migraine of my life and horrific nausea. A couple of hours in, I started diarrhea. 12 hours after I'd taken it, I felt massively better. (My psychiatrist had said that me recovering between 10 and 14 hours after would mean it was almost certainly the medication and not just my body being upset about something else.)

This has removed all SSRIs and SNRIs from the table. There are also a bunch of other medications I need to be cautious about because this was almost certainly a mild case of serotonin syndrome. It's exactly the same symptom set I had when I took Zofran five years ago, and that medication came with a warning about not using it with a long list of others due to risk of serotonin syndrome.

I take bupropion daily and occasionally take naratriptan. Both are on the risky medication list Neither of those have sent me over, but I didn't take naratriptan for the Cymbalta migraine.

My psychiatrist asked if I'd ever reacted like this to previous SSRIs. I didn't, but since I last took one, I've had a baby, had cancer, had my gall bladder removed, and turned 54 (still waiting on full menopause. If I make it to January without another period, it'll be official. Because it isn't yet, I had to pee in a cup for a pregnancy test before my colonoscopy. Fun times). I'm also taking a different set of medications now than I was then.

It says something about my experience with psychoactive medications that my primary hope for a new one is that it doesn't make me really sick. The only one that ever did a damned thing was an MAOI, and we can't do that now because of my limited ability to prepare food or to access prepared food.

Also, I'm not 100% sure that the improvement was the MAOI. That was the year Scott and I got married. I also got off of a medication (Prozac) that had been making me sick for three years and ditched the doctor who had insisted I keep taking it (he wasn't willing to refer me to a psychiatrist for followup. He insisted that, if we could get the dose high enough, it would work).

At any rate, I'm now doing a trial of clonazepam, taking half of a 0.5 mg tablet every day. So far, it is meeting my hoped for lack of really bad side effects. It's also, as far as I can tell, not doing much but making me a little drowsy and headachy which is not a thing I can handle for long. Medication related drowsiness, over the long term, ups my anxiety levels because it decreases my ability to cope physically.

Comments

[lunabee34]

*hugs*

I am so sorry that your doctor is not taking you seriously. It is so hard to find a good doctor to be an advocate and a partner.

[loligo]

I am baffled by your doctor; typically the doctors where I work are begging their patients to use glucometers. If you're interested, you can buy a basic one over the counter at the pharmacy for a reasonable price, so you don't need to rely on changing her mind.

[the_rck]

I've started looking at what's available, and I think I'm going to need help from an OT in coming up with something I can use. I have both bad hand tremors and osteoarthritis in both hands that mean my thumbs aren't very useful. I need, somehow, no fiddly bits (lancets and testing strips both look like problems), nothing I need to hold that's heavier than my current cell phone (which is an old and small model) or that needs to be held still. I won't have anyone around to help me most of the time.

[kyrielle]

I am wondering whether, in your case, a continuous glucose monitor would make more sense. Get one on properly, use the phone to read it (not perfect but a lot better than having to do the needle pricks probably? - you'd want to make sure it could handle the app, though), and it's good for two weeks assuming it doesn't come loose.

They put one on my CAT for goodness' sake, it worked really easily. Assuming that you're not worried about skin reactions from the adhesive, and assuming you can get one - my cat had a prescription, so I'm not sure those are OTC yet.

Plus someone could help you with putting it on, if that part's problematic - much more reasonable for something lasts a couple weeks than for something that needs to be done each time.

[the_rck]

I have a referral to see endocrinology in September. My pcp can't prescribe a continuous glucose monitor. She did refer me to these people 2-3 years ago, and they said she was over-reacting and told her that I didn't need any monitoring. The specific endocrinologist was fairly nasty to her about it.

This time, she has told them that, in her opinion, I really do need this. There's just no way to get me in sooner; their location means I have to plan considerably in advance to get there.

[kyrielle]

I'm glad she has been trying; that makes me feel better. And also, wow, that endocrinologist is...special. Just what the world needs, less cooperation between medical people. Sigh.

[heavenscalyx]

Ulgh. Having just had the one-and-AUGHdone experience with an SNRI, I feel you. Have you been through the gamut of antiepileptics that are frequently offered for migraine and/or neuropathic pain? I would normally expect at least Depakote and gabapentin in your med history, but your doc is being super weird about glucometers so...

[the_rck]

I know I took gabapentin at one point but am less certain at this point. Gabapentin was unhelpful for anything at all. It sort of decreased my anxiety for the first few months because my major side effect was to make everything emotionally gray. Nothing mattered enough for me to have an emotional reaction. They gave it to me for migraines and told me it might help with other pain; it did neither.

(The migraines were an oral contraceptive side effect with an atypical pattern. I got them, while on the pill, only on days when I had less than 8 solid hours of sleep. I got a lot of sleep hygiene fliers from doctors who couldn't be bothered.)

I don't think they ever threw Depakote at me. I was in my 20s and 30s during the years when we tried the most different medications. At this point, it's on the list of last resorts because my genotype means I don't metabolize it well and would need a lot of blood tests to figure out a safe dose.

I felt so much better, physically, after I stopped working, that all the doctors stopped trying to treat my pain. Chronic pain has crept back into my life gradually, but the really big problems all started after 2016/2017 when I took Tamoxifen. They didn't warn me that one of its major side effects is joint damage. The cancer center people are completely unsurprised but never once mentioned it before it got bad.

[heavenscalyx]

Yeah, gabapentin either works pretty well or doesn't do a damned thing. Likewise, even moreso, its cousin pregabalin (Lyrica). And, I mean, Depakote is just kind of awful (I wonder if the lack of it being thrown at you is a geographic practice difference -- I think it used to be pretty default in the northeast). :P

Unfortunately, the usual method of dealing with psych/neurologic stuff is to throw meds at it until one sticks. This is a terrible practice. I'm sorry no one warned you about tamoxifen; I'm sure the cancer center people assume patients will do research, but there's so much material out there, particularly re breast cancer, that it's nearly impossible for the layperson to sift through it all.

If it's of interest at all, topiramate is indicated for migraine and partial seizures, but is used off-label for neuropathic pain. It put a huge dent in my wife's migraines, and it's pretty interesting as a molecule -- it's not metabolized by the liver and is excreted by the kidneys, so the mechanism -- which like most psych meds, is unknown -- is uniqueish, I'm pretty sure (there may be a newer lookalike, since this one's off-patent). Issues: tingling in the limbs is one of the common side effects, which may not play well with your hand issues; trouble with word recall and occasional brain fog is another. There have been more adverse effects added over the years, as is traditional, especially in the anticonvulsants.

Also, I'm confused about your PCP's inability to, like, temporarily put you on insulin and prescribe a glucometer, especially if 2 different diabetes meds haven't worked for you. This is usually the default? The way people start doing the glucose control? PCPs prescribe this stuff all the time?

[the_rck]

As far as I can tell, my pcp is assuming that my diet and exercise issues are willful non-compliance.

My suspicion on the Depakote is that I got married in 1993. Even thought we weren't planning to try to have a child then, I hit a lot of reluctance about medications that were definitely known to cause birth defects. When I actually was considering it, eight years later, my pcp told me I shouldn't be taking any medications at all, no matter what because nothing was definitely safe.

I also have a long history of really weird-ass side effects. Butalbital gave me severe mania (and no pain relief). Primidone gave me a bad asthma attack. Flonase also gave me asthma issues. Primetene mist makes me relaxed and ready to fall asleep in under five minutes. Valium cranked my anxiety through the roof. Lunesta gave me insomnia. (Those are just the most memorable.)

My doctor is, I think, assuming insulin resistance. There's also the issue that I can't easily self-administer anything that requires fine hand control. The tremor makes precision impossible. (And the hand OT people are vastly confused by me saying that chopsticks are easier to control than forks, spoons, etc.)

[kyrielle]

The more I read about your doctor, the more I wonder about their thought process. Continuous glucose monitor to see what's going on, and then honest to goodness maybe an insulin pump instead of injections? You know, to minimize how much you need to do with your hands, that aren't working well for you?

The beauty is, if your doctor is somehow right (which I find unlikely and laughable) and it IS the blood sugar issues, doing this would both work and prove them right. OY.

[the_rck]

She can't prescribe continuous monitoring. She has referred me to someone who can, but there's a four month wait (and I won't be seeing a doctor for that appointment, so I may not get any help at all at that appointment).

My doctor is assuming insulin resistant diabetes which will not benefit from adding insulin. I am less certain about what's going on; the problems with jardiance and metformin happened at a dose that isn't considered sufficient to be therapeutic.

I think the first endocrinologist I saw actually understood my points about quality of life and how my physical issues limit possibilities for lifestyle modification, but he was really nasty to my pcp.

[heavenscalyx]

I mean, type 2 diabetes is usually assumed to be insulin resistance, but folks with it are often given insulin. You might be able to handle the insulin pens -- basically need the cap removed and the tip pressed to the skin, but I'm not sure about the nitty-gritty of managing them.

[evalerie]

Heavenscalyx - I am curious why you say Depakote is kind of awful. One of my kids takes a lot of it every day, for epilepsy, and it's a huge improvement over his previous meds. For whatever that's worth.

[adrian_turtle]

I took Depakote in 1991, and it was pretty bad for me. A lot of people find it upsetting because it can have mood and cognitive side effects, and those are scarier than digestive problems or headache or tremor or sleepiness or insomnia. (ETA: the cognitive problems scare THEM worse. By the turn of the century, I was delighted to trade some intelligence for headache relief. I would have traded my soul.) Like almost anything, you might get lucky and escape most or all of the side effects. Or you might get especially unlucky.

My Albany neurologist thought I might have seizures, but the EEG was ambiguous and some of the symptoms might be migraine aura. So he prescribed Depakote, It didn't help at first, so he prescribed a higher dose. I stopped sleeping for more than an hour at a time, gained 20 pounds, failed 2 classes, and started grinding my teeth with anxiety. Surprisingly, my migraines got much worse. Thus, he concluded I must not have epilepsy.

I didn't figure out the seizures for another 8 years, when a different doctor asked better questions, did better EEGs, and tried a variety of different anti-seizure meds. Now I take topiramate for migraines, absence and partial seizures. It helps my hand pain a little bit...that's mostly inflammation, but some of it is neuropathic. The topiramate does give me some cognitive difficulties and depression that I consider worth it. (I can feel the difference between my intrinsic depression and topamax-depression. They are more distinct than my intrinsic depression and depressed-because-the-world-is-depressing.) And what I meant to say before I started rambling was that the 50mg topiramate pills are much, much worse for depression than the 25mg pills. I am not suicidal because my wonderful doctor is willing to prescribe lots of 25mg pills.

[evalerie]

Adrian_Turtle: Hugs about your headaches and juggling several types of depression. And the nightmarish (and all too common) behavior of your doctor!

My son was on Lamictal and Banzel for seizures. They caused a huge loss of language for him, and major cognitive impairment when he already had massive cognitive delays and didn't have any cognition to spare! And they made him more aggressive. After I complained about these things for five years, they finally switched him over to Depakote, and this is generally much, much better.

Different meds work so differently for each person!

[evalerie]

Adrian_Turtle: Do you know why 25 mg topiramate pills are less depressing for you than 50 mg pills? That is, I mean, is 50 mg just too much topiramate all at once, or are you reacting to an inactive ingredient that's in the 50's but not in the 25's, or something else? I am just curious, so please only answer if you are comfortable with saying.

[adrian_turtle]

I cannot begin to understand why the 25mg pills are less problematic. I take 4 of them at a time in winter.* 2 of the 50mg pills are a complete disaster. (ONE of the 50mg pills can cause a depressive crash, even though it's inadequate for seizure control.)

*Because strobes are such a serious trigger for me, I can get away with a bit less medication at this time of year, when I am so much less likely to be out after dark and encountering vehicles with strobes.

[heavenscalyx]

I see you got a first-person response -- in general, though, the first-generation anticonvulsants are harder on folks with the side effects. Also, the nickname I've seen for Depakote is "Depabloat" referring to the massive weight gain some folks experience with it.

But everyone's neurology and metabolism is different, and some AEDs work for some folks and are terrible for others! As with all neuro/psych drugs, it's a case of throwing things at people until the least worst situation is arranged.

[evalerie]

Yes! "Least worst" is so much of my kiddo's life!

[the_rck]

Oh, and I did take Lyrica for a little while. It gave me prolonged migraines. Two weeks of every menstrual cycle was a constant migraine. I gave it up after 3 months because it wasn't helping at all and because I had a toddler to take care of. Migraines and toddlers aren't a great mix.

[snacky]

I'm so sorry to hear this. Can you ask for a referral to an endocrinologist, if that's the only person who can give you a glucometer?

[the_rck]

I have one. That'll be in September. I won't actually see a doctor then, though, so I'll have to hope.

[adrian_turtle]

Is the problem that you need a prescription to buy a glucometer? I've seen them OTC here for $30 or so, for the basic ones. Or that you need professional advice to know what kind to get? Or that you need a prescription to make your insurance pay for the meter or test strips?

[the_rck]

It's a mix of issues. I had the impression that I needed a prescription to get one at all, but that does seem to be just in order to get insurance to pay.

But I kind of do need professional advice. My hand use is extremely limited, and I need to be able to touch type. I have tremors that make accuracy of movement challenging (I can type as long as I have a surface upon which to rest the bases of my palms), and I have major thumb issues that mean I have trouble grasping and manipulating things. I can manage weight up to the size of my phone and size down to a cheese cube (though the cheese cube may end up with fingernail dents, and nuts the same size are harder to pick up because I can't get my nails in).

I need to see and handle things before I buy to see if I even can use them. Including things like the test strips and lancets (which I suspect will be huge problems for me). I can't pick up a playing card unless I can slide it off the edge of something and into my hand. I can't clean under my fingernails without help.

[evalerie]

Hugs, as always!!

[adrian_turtle]

I am so very sorry. You seem to have just terribly luck with doctors. Are you stuck with this one, or is there a way you can get another?