Hot Flashes, Menopause, and Dysautonomia

Image

For many years, I’ve wondered what it was going to be like to have the heat intolerance of dysautonomia, and the hot flashes of menopause. Well, now I know.  It’s like nothing else.  If you’ve ever been too close to a bonfire, and felt like  you were going to spontaneously combust, that’s close… but the fire is inside of you. You can’t move away from it.  It takes away the ability to focus on anything else.  It is all-consuming.  And, thankfully, it only lasts for 15-30 seconds, hence the ‘flash’ label.   By the time I get to the thermostat to set it on ‘freezer burn’, it’s over.  Then it’s back to the ‘normal’ heat intolerance of dysautonomia. I’ve had the AC on since January (in the middle of one of the coldest and snowiest winters we’ve ever had).  Now it’s summer, and the hot flashes are part of daily life.

Some other little treats I hadn’t expected with peri-menopause are nausea (literally like morning sickness, with no particular pattern), memory lapses (that go along with some leftover chemo-brain, and make me wonder if I’m becoming demented, but then remember that people who really are demented don’t wonder about it much), and changes in body odor.  Make that a stench that one expects amongst cross-country runners in the Sahara that have never had the luxury of showers or antiperspirant.  It’s awful.  Like I can smell myself, and it’s a combo of nasty pits, a landfill, and chunky, sour milk all wrapped into one.  Hormones, the articles say.  It’s all about shifting hormones.

I’d noticed some odd chin hairs for a while, and have a pretty good system for plucking… magnifying mirror, flashlight, reading glasses, and primo tweezers. Not a problem.  Or so I thought.  After the family Christmas party last year, I found one that was about an inch long (did I mention the vision changes that start pretty much on the 40th birthday?  I turned 50 last November, so my close-up vision is toast). I wonder how many family members saw it, and wondered if I was going ‘continental’.   I figured that was a hormonal thing.  But the nausea caught me off guard.  Fortunately, it does get better with some saltines and nausea meds.  The memory stuff is annoying, but I really don’t have to remember a lot, and the stuff I do have to remember, I write down.  The stink is manageable, but still annoying.  But the hot flashes?  They are “special”.  While I know in my head that it’s gonna be over soon, it’s intense for those few seconds. I keep wondering if I’m gonna leave charred areas on my recliner.

The dog seems to know when the hot flashes are going on, and she wants to get up on my lap with her hot furry self, and lie down on me.  😦   She’s been quickly pushed off of me  a few times, giving me a look of disgust.  I just want any exposed skin to have full advantage of the air conditioner when the flashes hit.  She can come back when it’s over.

The hot flashes happen several times a day, but not often enough to get any soy pills marketed for peri-menopausal women (I worry about side effects and interactions with my mandatory medications).  I keep telling myself that there’s a tradeoff for not having to ride the cotton pony every month.  I’ve been lulled into a false sense of “No Aunt Flo”, only to see her again three months since the last visit.  NO real warning, besides a day of boob aches, and then BOOM.  She’s back.  I’ll be glad when it’s all done, but have heard that sometimes the symptoms of menopause can be gone for years, and come back when someone is in their 70s and 80s.  Seriously? I might be 75 years old, and be wracked with a fogging stench and waves of blistering heat, whilst my friends are in their rockers, with an extra  lap robe and sweater on, and long-gone senses of smell?  I’ll be the odd duck, I’m pretty sure of that.   No point in thinking that I’ll turn ‘normal’ as time goes on…. that hasn’t panned out so far.  If anything, the dysautonomia is getting consistently worse (starting with the chemo).  Oh, bother.

Well, the wonder of those hot flashes is over.  I’m pretty sure they’d be awful with or without dysautonomia.  Seems like most women have them, with or without night sweats (knock on laminate, I don’t have those).  I don’t remember how long this is supposed to last… and in some ways, I guess it’s good that it’s started, so it can get on and be done with.  Until then, my thermostat is shifted more often than undies full of fire ants.  And with as much urgency.

Advertisements

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now…

Read at your own risk 😉

This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or those with previously diagnosed dysautonomia.  Add in some menopause, and changes in some medications/insulin- and the party just keeps getting better.  I’m tired of trying to figure out what is from what (fibromyalgia/chronic pain, chronic migraines, chronic headaches, reactions to foods, etc).

This past weekend (a few days after two epidural injections- one in my thoracic spine, and one in the lumbar spine), I had some horrific nights with severe leg spasms and cramping. Normally, I don’t have any type of reaction to the steroid injections, other than a day or so of higher than usual blood sugars, so I didn’t really think that was the cause.   I’ve had these  spasms before, but usually getting up once and forcing my feet into a ‘flat’ position, then walking around for a few minutes generally helps.  Friday night was like that.  Saturday night was a nightmare.  I was up every 45-60 minutes, with spasms that actually made the calf muscle (the ‘drumstick’ one) have an indentation in it (like a shallow dish) until I could get the muscle relaxed.  These types of muscle spasms are incredibly painful, and I find myself doing  sort of breathing that reminds me of someone giving birth on TV. Or acting like it.

I finally gave in and called my pain doc early Sunday morning – around 7:30 a.m.  He was very prompt in calling back, and heard me out when I  asked about serotonin syndrome- which he didn’t think was likely. That was good news (no need to go to the ER).   He did  tell me to not take the tramadol anymore, just in case.  I’ve been on methadone for pain for several months now, and had noticed that it wasn’t working as well with that original dose (which spooks me after watching people detox from methadone when I worked drug/alcohol detox.  It’s THE worst type of detox that I’ve ever seen -and I’ve seen lots of alcoholics, cocaine/speed addicts, heroin/opiate addicts, and benzodiazepine addicts- they have a ‘bonus’ 10-15 days after they stop taking the benzos, with another round of acute symptoms, etc).  I’ve been chicken about even taking methadone- but it’s a legit pain med, not expensive- AND, when used as prescribed, it’s safe. I use it as prescribed, and it still gives me the creeps.  I’m lucky to have found a pain doc who doesn’t just write prescriptions right and left.  There are ‘rules’ for being one of his patients.  I respect that.  At any rate, he told me to take a bit more methadone then and another muscle relaxant, and try to get some rest.   I did as I was told, and did get some sleep.  During the worst part of the spasms, it feels like the muscle is being torn from the bone- that has stopped, thank God.   Today has been one of fatigue- but no more spasms.

Trying to figure out what is going on when I start having symptoms can be tricky.  I had e-mailed my primary doc about the symptoms on Friday evening, and she wants me to have some lab work done, which is a good thing.  As a diabetic, I’m a little on the paranoid side about my kidneys.  The chemo was hard on my blood sugars, and I’ve got them MUCH better- but still some wacky ones here and there.  I’ve had a lot of peripheral and autonomic neuropathy symptoms- so that’s sort of my ‘default’ assumption when something is weird.  I get flushed, my skin is hot- but I can feel cold (strange for me), I get blotchy areas on my chest, and in general don’t look OK….

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

It’s hard to know if muscle cramps could be from potassium, sodium, calcium, or magnesium deficiencies (and those can get really bad- as in don’t make plans for next weekend, since you could be six-foot under by then).  Bulimics are very prone to those- and electrolyte deficiencies are big in sudden deaths from eating disordered patients.  But I’m not in that category any longer, thank God.  The peripheral neuropathy (likely diabetes related) in my legs doesn’t help.  My thighs have deteriorated, and actually shrunk (posterior thighs)- so they tend to hurt faster than before, after doing anything.

My blood pressure has been crazy again (directly from dysautonomia changes), and I’m going to have to start a different form of propranolol (Inderal), as every Medicare part D (drug plan) formulary I checked has cut out the extended release from the generic list.  It’s been generic for a LONG time- but now it’s priced in the ‘preferred BRAND’ category.  I have too many meds to spend a $42 co-pay for 90 days for one med (well, actually two- they cut the extended release seizure meds as well- but I do OK on the regular release form of that).  I already have to pay out of pocket for insulin and syringes, since getting them would push me into the ‘coverage gap’ (donut hole) requiring ALL meds to be out of pocket- which is a map for going straight to non-compliance.  And a non-compliant patient is loathed by medical professionals.  Doesn’t matter WHY someone doesn’t take their meds. There are a LOT of us out here who have to juggle medical expenses to be sure there are funds for the entire year.   Medicare is not free.   Anyway, the symptoms are acting weird, and some days, it’s hard to get much of anything done.  BUT, I still have so much to be thankful for.  I can still think, and put together what I think is going on so I can tell my docs the information they need to know.

Menopause is a special little treat that makes the dysautonomia worse. I have had a few hot flashes- and thank GOD that they aren’t the same as my general heat intolerance.  They are brief, and feel like fire from inside… I adjust the air conditioner (had it on when it was 17 degrees Fahrenheit this winter), and ride it out.  I hadn’t expected the ‘morning sickness’ from the hormonal mayhem, so Phenergan and Zofran have become good friends.

Oh well, done venting 😉   It’s been unpleasant.  But, I’m still living indoors, and have the blog and other online interactions (though the public comments on most sites aren’t worth the nastiness).   I’ll get the blood test done this week.  Onward !

UPDATE:  The Propranolol LA 120mg (generic for many, many years) is actually $77 per MONTH out of pocket.  And I have to have it.  I tried the regular release and all I did was sleep, get up to take meds, and sleep some more.  My life is limited, but being awake is one of the perks I do look forward to.

Chronic Pain in Its Various Forms…and Dysautonomia

While I’ve lost count of the exact number of days, this current ‘spell’ of severe headaches has gone on for at least 4-5 weeks, with maybe five or six days of no headaches at all in any given day.  Of course, it isn’t ‘just’ a headache.  I get the dreaded nausea along with it.   There have been times during most days when the pain lessens, but most of the time it’s there.  Today has been pretty bad- I’m taking a chance by blogging, since the scrolling on a page can make things worse, but I have to ‘talk’ to someone.

I e-mailed my primary doc about changing the nausea meds. After several years on Compazine, it seems it’s lost its touch. The leftover Zofran (from chemotherapy for leukemia) doesn’t do much anymore, either.  She called in some Phenergan for me.  The pharmacy didn’t have the full 90-day supply available, but my dad brought me the 12 pills they had. They will call when the rest of it is available.  I was just so thankful to get anything that may offer a bit of relief from something.

I’ve been trying various ‘schedules’ of different pain meds, from different over-the-counter pain killers (Excedrin, Aleve) to a weaker  prescription med (tramadol) to a stronger prescription med (Norco 10/325).  None of it is working.   I even did a ‘bad’ thing today before taking any other prescription meds (so no risk of interactions) and took some methadone that I have leftover from a while back. It isn’t working, and I’m not willing to take another dose before talking to my pain management doctor.  He’s a board certified pain management doc, and not a ‘doctor feel-good’.  He has ‘rules’, which I respect.  I don’t want a doc who calls things in over the phone without assessing me.  I don’t want the drugs per se. I want less pain.  I don’t expect to ever be pain free, but I would like a lesser degree of pain.

Pain-free isn’t a realistic expectation with degenerative disc disease, degenerative joint disease, fibromyalgia, bulging discs (neck),  diabetic nerve pain,  and chronic headaches.  I’m just looking for a degree of relief that keeps me able to take care of the basic chores around home, and keeps me able to do some ‘minimal’  fun activities, such as watching a movie on TV, playing some online games, playing with my puppy, or other such forms of distraction and entertainment.  The last time I talked to my pain doc, we talked about the nature of degenerative disorders… they don’t get better by definition.  The fibromyalgia and headaches are just ‘bonus’ disorders 😦

I have to be careful about pain in regards to the dysautonomia, as well.  Pain is one of my major ‘triggers’ for heart rate and blood pressure changes that can land me on the floor, passed out.  Those who have severe menstrual cramps that cause lightheadedness and feeling ‘faint’ go through something that is essentially a result of the same thing- vasovagal nerve stimulation.  Vasovagal syncope (fainting) is fairly common. But any sort of fainting is a risk for injury.  And injury is a risk for further mobility limitations. I can’t risk that.  I want to continue to live on my own, and I can’t afford help (nor do I want someone hovering over me). Side effects of many pain meds also increase the risk of lowered blood pressure.  I have to keep that in mind with any new medication, as the interactions with the other meds I take can be risky.  I ‘ground’ myself to home when I am put on any new meds, just to be sure I’m not caught off guard at the grocery store or pharmacy (about the only places I go) with some drop in blood pressure from a new med not playing nicely with something else I’m on.

I’m going to have to go see my pain management doctor soon, to discuss a different plan.  I’ve been on stronger meds before, but have asked to go back on weaker meds, knowing that this is a lifelong thing, and I need options for the future.  For the degenerative disorders, spine surgery and another knee replacement are likely down the line, as well as hip replacements. I want to postpone those as long as possible. 😮  There is the possibility of having some sort of pain-nerve impulse thingie implanted (I need to read more about that).  I’m not all that gung ho about ‘stuff’ being put into my body that involves hardware.  I’m hoping that the weight loss with Nutrisystem will also help my knees and hips… my spine is a wreck from neck to bum, so weight loss will be good, but not a ‘fix’.

Methadone scares me. And, today, it’s not working.  But, it might be something I have to try more regularly to get a final ‘verdict’ as far as its real efficacy.  I’m also very reluctant to take methadone after working drug/alcohol rehab, and seeing how it is THE worst in terms of withdrawal. Those patients made heroin detox look like a cakewalk – and heroin addicts had it bad enough.  I understand that I wouldn’t be taking it for illegal drug replacement, and that chronic pain patients who take medications as prescribed are highly unlikely to develop true addiction (different than physical tolerance or physical dependence).  Only %3-5 of patients who take pain medications as prescribed go on to become addicted (which includes the strong psychological components of the ‘high’, cravings, etc). Ninety-five to ninety-seven percent of us don’t become addicted.  The ‘tolerance’ and dependence may require dosage adjustments.  That’s not because of addiction, but the physical acclimation of the body to the medication.  It gets used to the drug being there, and requires dosage changes to continue to provide pain relief.  I don’t like that, but I understand it.

I’ve also been on the fentanyl patch.  I don’t remember it being all that great at the dose I was on, but it might be something else that is considered.  The nice thing about ‘the patch’ was a continuous release of medication, so no ups and downs depending on me taking another dose.  It was also not hard to stop taking.  That has huge ‘benefit’ written all over it.  When I wanted to go off of it, I was weaned down to lower dose patches, and then given pain pills to taper off of the narcotics altogether- no withdrawal symptoms, and it didn’t take that long.

For ‘breakthrough pain’ on either methadone or fentanyl (or the current Norco), I’ve taken tramadol.  It’s not as likely to interact with the stronger narcotics or create an increased risk for respiratory depression (which is essentially what causes death in drug overdoses- accidental or otherwise).  It’s not a great pain killer, but it can take the edge off of the joint, muscle, and head pain that is getting worse.  Things like ibuprofen and naproxen sodium have limited use with the headaches and fibromyalgia.  They do help with the joint and disc disease to some degree, with no neurological or cardiovascular effects.  Worth having around  and taking !

I’ve tried physical therapy, chiropracters, Imitrex (which helped somewhat), heat (but that triggers the dysautonomia), cold, TENS unit, various pillows, and stuff to unclog my sinuses.  If I thought chewing on the siding of my house would help, I’d be out there with the woodpeckers.  While I’m not losing time off of work (been disabled since 2004), this pain of various sorts does change what I am able to do here AT home.  Things like laundry, vacuuming, other cleaning, etc are put on hold quite often.  If I’m having one of the ‘bad’ days, there’s no way I’ll get in a car and go to the grocery store, pharmacy, or MD appointments (the only places I go).

All I know is that the past several weeks (that have come in waves for years) are getting really old. I’m going to have to stop being stubborn about the stronger meds if I want any quality of life between ‘waves’.  I’m already limited. I want to have as much ability to function as possible, and this level and duration of pain isn’t OK.  My pain doc has been very good about letting me let him know when I need something stronger, since I’ve been so hard-headed about using the stuff.  He knows when I say I’ve had ‘enough’ that  I’m not looking for drugs- I want to not hurt (as much).  I need to make the appointment, and go see him (he does NO prescribing/refills over the phone past the ones on any written prescription).  He does NO dosage or medication changes over the phone.  So, I have to drag my butt in there.  He’ll probably do some sort of injection (spine, jaw, neck, occipital nerve blocks, facet injections). The ones in my lower spine seem to help the most- I could tell that my legs hurt less when I’m at the store after I got the last shot.  I may ask for my left knee to get zapped.

Now to just find a day to go and see him when I feel well enough to see a doctor.  But even though it’s been pretty unpleasant lately, I realize that I have so much to be thankful for.  I know that God hasn’t deserted me, and that I can get a lot of comfort in knowing that whenever I get to eternity, I’ll get a new body without pain.  That helps. 🙂

Update:   After being on CPAP for more than a year, the daily headaches are pretty much gone !  They were caused by hypoxia from not breathing at night.  The rest of the stuff is still a bummer, and I’m off to see my regular MD today (10-19-2016) to get medical clearance for massages and a chiropractor.

Chemicals in My APL Soup

Cytarabine (Ara-C), daunorubicin, ATRA (all-trans retinoic acid), arsenic trioxide (Trisenox),  some more daunorubicin, then methotrexate, more  ATRA, and   M6 Mercaptopurine.   Hmmm, yummy !

Those are the standard drugs for the M-3 subtype of acute myeloid leukemia.  Or, for those in the know, acute promyelocytic leukemia, which accounts for about %10 of all AMLs.  Some people get some of those, I got them all over nineteen months.

When I was first diagnosed, I spent six weeks in the hospital. I started getting ATRA (pills) on day 2 when the lab work was back to know that’s what I needed.  The next day, I started the first of three days of daunorubicin (the red stuff), and  the first of seven bags of Ara-C (each bag hung for 24 hours over 8 consecutive days).  I only thought I felt bad when I got there- but even now, I realize I was too sick to really care how sick I felt.  Overall, however, the side effects were managed well.

The biggest side effects involved my mucous membranes (mostly my mouth and innards) and hair loss (which I couldn’t  have cared less about).  There was some “Magic Mouthwash” stuff that had some numbing medicine and other ingredients to make my mouth feel less like a gravel pit whenever anything touched it.  Otherwise, it was like all of the little wrinkles on the roof of my mouth had smoothed out.  My innards were just sensitive, and there was an express route between my stomach and back door.  The back door got tender.  I only puked once.

My tastebuds died.  Well, actually they just got very ill. Or psychotic.  I craved kosher dill Claussen pickles for a while, then sandwich cookies (which that dear dietician managed to find in various flavors).  I was losing 5 pounds a week (muscle weight), and even though I wasn’t exactly going to die of starvation, I needed to keep my nutritional status up.  The dietician was in my room a lot, bless her heart (and I mean that in a good way- not how it can be used in the South, ha !).  I was loving one food one day, and the next day I never wanted to see it again. She had every menu in the building in my room, and I was allowed to order from any of them.  For a while, I even craved baby food pears and applesauce.  When they sent the jar of peas, I bailed on that option. Bleh.

The hair loss was not something I really cared about, aside from the straggly hairs that refused to give up.  I saw scalp hair loss as an all-or-nothing event.  If most went, all had to go. The strays near my forehead were unceremoniously whacked off by my father with some poultry shears he found in my kitchen.  Chicken scissors for hair trimming. Well, OK.  It worked.  My eyebrows, arm and leg hair, and any other hairs were MIA for over a year altogether.  No biggie.  I didn’t want a wig- so if I felt really spiffy, I’d wear a bandana, or a hat crocheted by my bio-mom.  I’d gotten my first crocheted hat at the hospital, but my favorites were the ones made for me. 🙂

After the induction chemo, I took the ATRA until starting the consolidation chemo – which consisted of arsenic.  Yep. Arsenic.  Trisenox, when not used in first degree murder.  I got fifty doses; two 25-dose cycles.  I had to start out the first week in the hospital to be on a heart monitor.  Then I went to the hospital every day I got the stuff to be hooked up for monitoring. I couldn’t be in the chemo suite at the doc’s office.  I was really tired from the arsenic, but that was the main effect. I’d been told it’s really hard on the stomach, and nausea/vomiting were common; I never puked from arsenic.  I did wonder if I’d croak from heavy metal poisoning while being cured of leukemia.  Hmm. I had a brief second round of daunorubicin, but had to stop that since my heart function was starting to look iffy.  Side effect of chemo drugs.  That and weight gain… I didn’t end up looking like I’d been on chemo; I looked like I’d spent six months eating food from the county fair.

Then I started maintenance… ATRA (did I mention that stuff is about  $120K if someone doesn’t have insurance? ), methotrexate, and M6-mercaptopurine, all on different schedules.  I was supposed to take those for a year.  I made it for 11 months.  The muscle and bone pain were pretty intense, and my  doc said I’d had enough.  I told him I’d stick it out if it meant staying alive, but he said no- I’d be OK.   I’d had no relapses since going into remission in the hospital that initial time, and no major issues come up since the shingles during that last week of arsenic.  My lab work had stayed stable.  I was done.

I’ve been off of all chemo for 11 months.