Ah, depression. The utmost in depressing topics, right up there with the stock market, America's current president (at time of writing), and oh, right, Lyme Disease.
Lyme Disease can without question cause depression. Understandably. Depression probably doesn't cause Lyme Disease. They can exist separately though, too, and you certainly don't have to be suffering from any sort of physical illness to get depression. This is one of the reasons depression is depressing: it's one of the least understood mental illnesses because of this. Famous stars who seem to have everything can even get depression. The latest star being treated for depression is Justin Bieber himself.
My experience with depression started when I was a preteen. I exhibited some symptoms beginning middle school but a fall-out with my friends instigated a full-on clinical diagnosis of Major Depressive Disorder. I don't really remember what happened at the time but I think I was just going home and going right to sleep, maybe getting up for dinner or homework, then going back to bed. I was put on antidepressants as a preteen. To this day I think they are what put into motion my bipolar diagnosis, but at the time that was the only option. Therapy wasn't cutting it. I also had to change schools.
Depression can be acute or chronic, and like I said, there doesn't have to be anything specific causing it. In a lot of cases it can be resistant to treatment. Chronic depression is usually a neurotransmitter problem and that can be corrected with medication potentially, but finding the right medication is another problem in itself and can take years of trial and error. Conjunctive therapy can help but if your brain isn't operating it's not gonna do a whole lot.
The major depression subsided but I continued to have low-key depression throughout high school, and it affected my self esteem which affected my ability to make friends, and that became a vicious cycle. I had to switch schools several times and was home-schooled for two semesters.
That's the thing about depression, it is a cycle. Your depression causes low self-esteem, loss of motivation, loss of interest in doing things, isolative behaviors. And these cause withdrawal from society and formerly enjoyable activities, and then you lose your sense of purpose because nothing makes you happy anymore and that's even more depressing. It's as much a physical illness as a mental illness. Your brain just is not functioning properly and the happy parts aren't responding, to put it in very un-scientific terms.
I went to college and again had trouble there. My roommates did not like me for whatever reason. I was still struggling with an eating disorder which worsened notably during that period. I had to drop out within a month and spent the rest of the semester at home doing nothing. I slept from 4am to 4pm for months. I eventually went to city college the following semester and made up for lost time by taking a ton of units, but the friend thing remained a chronic struggle.
School and work are two major things depression impacts. Teachers lose their patience when students are chronically late, miss assignments, and seem uninterested in the subject matter (because nothing is interesting anymore and why bother). Bosses lose their patience when employees are unmotivated, potentially unfriendly, and don't get their work done on time. Dropping out of school and quitting work are unfortunate consequences of an illness you really have no control over but for some reason are blamed and shamed for having.
I was in my last official year of college when I started smoking weed for depression. I don't recommend this for obvious reasons I'll get into right now. First, weed is not a magical cure-all for everyone. One of the most annoying groups of people are the marijuana evangelists. There is no such thing as a cure-all drug. If it sounds too good to be true, it is. Everyone knows about weed and its existence, and the reason not everyone uses it is because it's not for everyone. Well, eventually, this weed caused me to stop sleeping, which of course caused me to be delusional, and then I was put in a hospital and diagnosed with mania and bipolar disorder. That instigated a two-month long inpatient stay where I put on 30 pounds due to being drugged up so I would fall the fuck asleep. Queue relapse of eating disorder and I think I explained the rest in my first post.
This is the problem with diagnosing depression. Often other illnesses are mistaken for depression. Bipolar 1 and 2 have major depression components. Binge eating or restricting can be a symptom of depression but also an eating disorder in spite of a healthy weight (my views on eating disorder treatment warrants a whole 'nother post). PTSD is majorly rooted in depression. But even physical illnesses like hypothyroidism, chronic fatigue syndrome, any chronic illness really - the fact that the body slows itself down or is spending all its energy fighting a virus or bacteria or parasite or what have you, means it's not focusing on, well, making you happy. The bacteria invading your brain can fuck up all the wiring up there too. Hell even having shitty gut bacteria can mess up your happiness signals. Junk food diets aren't exactly known for making people happy.
In conclusion. Depression is depressing. The politics of depression is depressing. The treatment and outcome for depression are depressing. Did you know it's been established that there will never be a cure for depression? That's depressing. But that doesn't mean you shouldn't keep fighting. Not everyone is depressed, most people have had a life before depression, many have lives after depression. It's possible. It's hard. Do I have the answer? No. I'll always struggle with it and it's why I'm mistaken for an introvert which again is a whole 'nother rant. I've been told it's almost a part of my personality at this point by a therapist, and a psychiatrist said I'll need to be on benzos for the rest of my life (again, a whole 'nother topic for another time), because depression often comes with anxiety. I've tried treatment after treatment, neurofeedback, TMS, drugs, illegal drugs, no drugs at all, eating healthy, exercising, meditation, socializing. Some stuff works sometimes, some stuff doesn't work at all, it's a crapshoot. Is there a point to this post? No. But hopefully something in here has been relatable and maybe even made you feel a little better that you're not the only one suffering.
Friday, March 15, 2019
Monday, February 18, 2019
how to be supportive of someone with chronic illness
I thought this was an important post to make in light of recent events I've experienced.
A lot of people don't understand chronic illness. Your own family probably won't, which is extremely disappointing. Friends can alienate you, you feel isolated, and what makes it even worse is when people say the wrong things.
Family, friends, coworkers, acquaintances, and people who know or meet anyone with a chronic illness, here is a short post detailing some of the things you should and should not say to someone suffering.
Do say:
"I'm sorry you are dealing with that [symptom]."
"I don't understand but I sympathize."
"That sounds very frustrating/difficult."
Do NOT say:
"That doesn't sound right." (When they mention an unusual symptom)
"What does your doctor say about that?"
"Are you sure that's what's going on?"
"Have you tried [diet/exercise/lifestyle tip]?"
"Yeah, I feel tired all the time too."
"You're just getting old."
And the number one thing you should NOT say in any form to a chronically ill person...
"I don't believe you."
A lot of people don't understand chronic illness. Your own family probably won't, which is extremely disappointing. Friends can alienate you, you feel isolated, and what makes it even worse is when people say the wrong things.
Family, friends, coworkers, acquaintances, and people who know or meet anyone with a chronic illness, here is a short post detailing some of the things you should and should not say to someone suffering.
Do say:
"I'm sorry you are dealing with that [symptom]."
"I don't understand but I sympathize."
"That sounds very frustrating/difficult."
Do NOT say:
"That doesn't sound right." (When they mention an unusual symptom)
"What does your doctor say about that?"
"Are you sure that's what's going on?"
"Have you tried [diet/exercise/lifestyle tip]?"
"Yeah, I feel tired all the time too."
"You're just getting old."
And the number one thing you should NOT say in any form to a chronically ill person...
"I don't believe you."
Monday, January 7, 2019
I CAN'T F@#$ING SLEEP (a.k.a. the insomnia mega-post)
There's nothing quite like being told obvious advice by some idiot when you've been struggling with a serious issue for years. I can't tell you how many times melatonin has been "recommended" to me by "casual professionals," for lack of better terms. The latest one I got was to avoid caffeine. Wow, really? You mean I should avoid the very thing that keeps me awake? Jesus what a revelation.
This post is about all things sleep. And boy have I become an expert. However I still have not solved my own such problem. If you're struggling, and you've yet to find the solution, here is all the data I've compiled in my half-decade-long search for sound sleep. Mostly first-hand experience, but some things avoided for reasons detailed below. Here are three categories of sleep aides, in order of potency.
Natural solutions
5-HTP: Precursor to serotonin which is necessary to instigate the sleep cycle. If you're deficient in serotonin it will help. Otherwise not so much. It can also keep you awake for the same reason (serotonin can be stimulating). Be careful taking it if you're prone to mania.
Alcohol: Alright this is NOT a sustainable solution but technically it might help you sleep. I just feel like my list has to be exhaustive y'know. I don't recommend this method of knocking yourself out. Over time it will mess up your sleep, and it won't help you stay asleep.
Ashwagandha: Hard to spell. This is what's known as an "adaptogen". I have no idea how adaptogens work. Supposedly they lower what's too high and vice versa, but how your body or the herb knows how to do this beats me. Anyway, this is meant to regulate your cortisol and raise/lower it at appropriate times. For me personally, it kept me awake. So I'm not sure adaptogens are really a thing.
Cannabis: Good old weed. Mary Jane can work like the Sandman for some but for others she can cause paranoia and anxiety at best, hallucinations at worst. Long term this is a poor choice because it tends to disrupt deep sleep, which is the restorative kind, in favor of REM, or the dreaming kind. It could also potentially cause psychosis and bring out latent psychiatric disorders if you're predisposed. Yikes. Use with caution.
CBD: Cannabidiol, an extract of cannabis with no psychiatric properties or THC. Can be vaped, used as oil, or smoked, but the flower will have an amount of THC in it. You can buy this online when derived from hemp. Good for pain management too. It can work as an antipsychotic/anti-anxiety as well. Kind of weak for sleep though, at least in my experience.
Chamomile: Found in "Sleepytime"-type teas. Can help relax and calm your mind but probably won't put you to sleep, to say the least.
GABA: A somewhat lesser-known supplement that's used for anxiety. GABA is actually a neurotransmitter, the one that calms, as opposed to the one that, well, opposes it: glutamate. Some claim it can be addictive but there is not much evidence to support this. There is also some debate as to whether it can cross the BBB (blood-brain barrier) in supplement form. PharmaGABA is a specific type that is supposed to do this more effectively. GABA works best as an anti-anxiety supplement, and only relieves mild insomnia. It can have a bit of a rebound anxiety effect the following day.
Homeopathy: I'm gonna be honest, I think homeopathy is a hunk of junk, and it has about no science to prove it works. But it can work for some people, paradoxically. Its modus operandi is it takes an ingredient that provokes the symptom you're trying to eliminate, and waters it down to an undetectable minutiae and packages it in some water or a sugar pill. There are infinite concoctions of insomnia-related homeopathy and I don't care to list any of them for reasons stated.
Kava (kava): Like theanine, it works with GABA and acts as an anti-anxiety/relaxant. Commonly used in a tincture or drank as tea. Can have some trippy/recreational effects when taken in high doses.
Kavinace: Very strong and thus very addictive. Some people are behind this one but I compare it to benzos (see below). It will give you just as horrible a withdrawal, without the seizures. Panic attacks, possible sweating, the whole gamut. Once a week is probably the most often you wanna take this. It starts to lose effect after a while anyway.
L-Ornithine: An amino acid. I haven't tried this one so I guess it's still on my list, but I have a feeling it's not quite strong enough for my level of insomnia. It's supposed to be relaxing and eliminates ammonia in the gut (which, obviously, is inflammatory, and inflammation = insomnia). More of a stress reliever, methinks.
L-Theanine: Similar to GABA but does not have its own neurotransmitter, though it does work with GABA. Better used as a mild anxiety reliever than for sleep but can calm your thoughts down if that's what's keeping you up. However, if you have a sensitivity to GABA-ergic drugs this can produce a bit of a rebound effect the next day, like GABA itself.
L-Tryptophan: Sounds familiar because it's that ingredient in turkey that allegedly makes you tired after Thanksgiving dinner. That's actually more likely from eating massive amounts of food but anyway. It's another precursor to serotonin which is necessary for sleep. If you're not deficient in serotonin it probably won't work. If you are but can't covert tryptophan well it probably won't work.
Magnesium/CALM: CALM is a drink with magnesium in it. Magnesium is relaxing. It is an electrolyte so it's necessary anyway. Too much will give you the shits but it's not really dangerous unless you're mainlining it. It can calm your thoughts down and give you a feeling of relaxation but it won't relieve anything more than mild insomnia.
Melatonin: Yep, you got it, the number one Google solution for insomnia. More an insult than a suggestion for us hardcore insomnia sufferers. It's a natural hormone produced in your body when it gets dark out. Some people don't produce enough of it, in which case they need supplementation. No more than 3-5mg should be necessary. If you aren't lacking in it, you won't benefit from it. This is for people who need to reset their sleep cycles, mostly. Not hardcore insomniacs such as myself.
Progesterone (cream/suppository): Funnily enough this is actually a sex hormone. Yeah, I know, unusual to mention this in a sleeping post, but it is also relaxing, and if you're short on progesterone (hello PCOS) it can help calm you down when applied/taken at night. Be careful when messing with hormones. They are powerful and any alteration in one affects the rest of the hormone network too.
Rehmannia: This one is new to me, someone randomly mentioned it on a message board for Lyme disease regarding cortisol regulation. I have not tried it yet as it is not sold in stores. It's a Chinese herb that is supposed to lower cortisol, which as you will read below, can be a problem, so be sure this is your problem before treating it. It also alleges to give you more energy when you're depleted from stress/lack of sleep. So basically an adrenal supplement. No word on this one yet.
Schisandra: Like rehmannia, I'd never heard of this one either and have yet to try it or find it. It promotes calmness and relaxation, and like ashwagandha, is an adaptogen. No word from me on this one either.
Seriphos: Phosphatidyl serine, or phosphorylated serine. This, uh, chemical? Lowers your cortisol. Take it at night if you have high cortisol keeping you up. Be careful because too low cortisol is a problem too. It won't lower it to dangerous levels likely, but it can lower it enough to paradoxically raise your anxiety. If high cortisol/irregular diurnal cortisol cycles are keeping you awake this will help. Otherwise you're tampering with something that doesn't need tampering with.
Valerian root: Another GABA-ergic drug/herb. This one is a little more potent than the others. It has a strong taste and is usually taken as a tincture. It can definitely induce sleepiness and might be helpful for moderate insomnia or problems falling asleep.
Other miscellaneous relaxing supplements: Echinacea, holy basil, lemon balm, magnolia bark, passionflower, vitamin B6
OTC solutions
Benadryl: That little antihistamine you take when you have a cold is also supposed to help get you to sleep. Lots of antihistamines do this. It can however have the paradoxical effect of keeping you awake like it does for me. This one can be good if you suffer from MCAS/histamine intolerance that keeps you awake, but of course you're better off avoiding reactive foods/items in the first place.
Doxylamine: This is the "stay asleep" part of Unisom, which also includes benadryl (diphenhydramine). This is the one that helps me sleep best, after NyQuil.
NyQuil: Contains doxylamine, acetaminophen, and DXM (dextromethorphan). For some reason this one knocks me out the best, even though the actual ingredient for sleep is very low in dose - about 1/4 of the regular tablet dosage. Unfortunately can't be used long term. Acetaminophen is hard on the liver.
ZzzQuil: Don't be fooled, this is just Benadryl repackaged as a pricier sleep med.
Psychiatric/prescription solutions
Ambien: Everyone's favorite DUI drug. I've been a victim to it myself. Got my license suspended for about a year. Fun times. Personally all it does is put me in a hypnagogic state, but for some it's a lifesaver. Unfortunately long-term use is highly ill-advised due to addiction. It's considered a z-drug (see below), which is similar in mechanism to a benzo (see below again).
Antihistamines: Basically, hydroxyzine and Vistaril. Powerful antihistamines that will probably knock you out or at least make you fairly groggy. Side effects include sleep hangover and weight gain.
Antipsychotics: These are the second line of defense by psychiatrists when a patient has sleep issues, after short-term solutions. Antipsychotics work against dopamine which is a stimulating neurotransmitter. It may knock you out, or it may just make you really slow. Often lasts into the next day. Majorly problematic side effects of weight gain and metabolic syndrome.
Belsomra: A new sleep prescription med. Not much is known about this one. For me it did nothing. Probably not addictive, but also not very strong.
Benzos: If you're reading this blog and are considering, or on, benzos, I urge you to please stop. If you aren't already, you will become physically addicted to them and will need a higher and higher dose to achieve the same effect. After that the only way is off of them. At worst your doctor could yank you off them way too quickly, and you could actually die from a seizure. They will fuck your GABA receptors up and the withdrawal, unlike what doctors will tell you, consists of much more than a return of your anxiety/insomnia symptoms. There's a wonderful site called benzobuddies that provides support and a guideline to getting off them. Common ones are Ativan, Klonopin, Valium, and Xanax. See also: Z-drugs.
Beta blockers: These drugs should be used with caution because they slow down your heart rate and lower your blood pressure. If you have low blood pressure already they can be dangerous and potentially fatal. A slower/weaker heart beat will get you to sleep but this is not the best solution for obvious reasons.
Gabapentin: More used as a pain drug than a sleep drug but it can have relaxing effects for the former reason. It's a bit of a misnomer because it doesn't work on GABA. This is one I do not have experience purely because I hear the withdrawal is a bitch and well, been there done that with benzos.
Prazosin: If nightmares and/or PTSD are keeping you awake or causing pre-sleep anxiety, this will help. Its actual use is not related to sleep at all, but it does have the side effect of mediating negative thought patterns as it relieves hypertension. It's not a beta blocker but it does treat high blood pressure so once again, use with caution.
Trazodone: Atypical antidepressant that is no longer used for that reason but for sleep. This is the one I use. Now it only prevents me from not sleeping at all. I need an adjunct with it, usually NyQuil, much to my chagrin. It can be pretty sedating and last into the next day. It can also give some people some mild anxiety for some reason.
Xyrem: A.k.a. GHB a.k.a. the date-rape drug. Sure the company will tell you differently but no one's fooling anyone where I'm concerned. This "narcotic" is actually a very useful drug for narcolepsy. It costs upwards of a thousand dollars a month, ironically enough, seeing as the street version is probably one of the cheapest drugs you could find (not that I'd know). Only used in severe cases of insomnia and even then, good luck getting a prescription. You have to take two doses a night. It works similarly to benzos (on GABA receptors) so you can become addicted to it unfortunately, meaning it will stop working. Also has a not-so-sexy side effect of bed-wetting if taken in too high a dosage (again, not that I'd know).
Z-drugs: Ambien/zolpidem (above), Lunesta (zopiclone/eszopiclone), and Sonata (zaleplon) are all collectively known as Z-drugs due to their name. They work similarly to benzos and are just as addictive. Lunesta is known for giving your mouth a nasty metallic taste in the morning. Lunesta worked best for me personally but Ambien is the most popular. Once again, avoid these except in case of emergency.
Other methods
Acupuncture: Now I know some people lump this in with homeopathy, but there are actually a number of clinical studies showing some science behind it, based on using true acupuncture points versus randomly-placed needles. Acupuncture is based on energy meridians and is part of Chinese medicine. It's often covered by insurance to boot. I've tried it, and while it did help me relax/nap during the session, the effect did not carry over into the night. And believe me, I gave it plenty of tries before I gave up on it.
Camping: There is some science behind camping and sleep. Yes, for fellow Lyme sufferers camping is possibly the last thing on your mind, but if you're safe about it, it can be quite beneficial. A week spent falling asleep and waking up to natural light in an area off the grid can reset your sleep cycle potentially. My body for whatever reason resists replenishing its neurons by sleeping, so unfortunately sleeping outside for a few weeks resulted in, well, simply not sleeping for a few weeks.
Diet changes: There are a number of diet changes you can experiment with to help you sleep. Among them are eating carbs at night time (stimulates serotonin release), abstaining from carbs altogether (to moderate blood glucose which can cause midnight awakenings/cortisol dysregulation), intermittent fasting (blood glucose again), and most obviously, avoiding caffeine/stimulants (possibly including sugar). Cutting caffeine out, of course, is usually first on everyone's sleep-improving to-do list.
Epsom salt baths: Alright, this one is a bit of a toss-up science-wise. Epsom salt baths are known for their relaxation and healing properties, supposedly due to the magnesium in the salts being absorbed transdermally. However, science does not back this up (magnesium can't be absorbed through the skin). So the actual bath might just be the thing doing all the leg-work here. Anyway, this won't cure your sleep woes, but combined with other methods, can put you in a relaxed enough state to get you there.
Essential oils: I should probably lump this in with homeopathy. Essential oils (honestly have no clue why they're deemed "essential") are used for a wide variety of purposes. Lavender oil has relaxing properties to it when inhaled, supposedly, and I believe vanilla might as well. I'm not well-versed on these because they don't do much and their effects are primarily psychological in nature.
Exercise: This can be iffy. Exercise should exhaust you to the point of falling asleep when everything is working right. But when you have chronic insomnia, it's obviously not. Exercise with chronic illness can just make you physically exhausted, slowing you down for the rest of the day at best and overstimulating you at night at worst, paradoxically keeping you awake. For this reason it's best done in the morning. Yoga is the best exercise for Lyme/chronic illness patients as it is done at your own pace and not very intense (unless you do bikram/hot yoga, which is another story entirely).
Hypnosis: Yes, hypnosis. I've tried it and I'll spare you. This should be done if you have anxiety related to falling asleep and/or in general. If your thoughts are keeping you awake at night, or if the bed(room) is a source of anxiety consciously or subconsciously, this is a good option. But if your brain/body just refuses to fall asleep on its own terms, having someone trying to convince your subconscious to do so probably ain't gonna work. This stuff's expensive too. Meditation (below) would be a better option.
Massage: Massage is the ultimate relaxation technique, though this is also a costly habit, and you sure can't get one every day if you're on a budget, though you do need to sleep every day. Touch is an underrated form of healing and we all require it as humans. Whether traditional Swedish massage or deep tissue or hot stone or whatever other kinds are out there (sidebar: reiki "massage" isn't a massage, I'll leave that up to you to research), a massage can't hurt. Well, not unless you're full of knots, in which case I'm guessing you have something else going on keeping you awake.
Meditation: Another classic armchair psychiatrist prescription. Meditation works for some at calming the mind. The point is to sit upright and practice thinking nothing. As soon as a thought comes in, you let it go. Can be done with music or without.
Relaxation/affirmation tapes: These can lull you to sleep, or like me, the talking can keep your mind awake. Basically they are CDs (or Youtube videos) that repeat many affirmations over the course of an hour or more and the monotony is meant to bore you to sleep. They can be helpful if you're prone to subconscious suggestion. Or again, like me, they could just irritate you and keep you up.
Rife machine: The Rife machine was invented a few decades ago. The idea behind it is it emits EMF frequencies on specific wavelengths to kill specific pathogens. Somehow it treats every illness known to man. Sounds too good to be true, right? Mhm. I did get one of these (a cheap-ish spooky2 version) and tried it for a bit. At first I think the waves just kept me awake. After a while though it just seemed to do nothing. And then the machine stopped working. RIP. Proceed at your own risk.
Sleep deprivation: What! Depriving someone of sleep to help them sleep? That sounds like dieting before going on vacation if you ask me. But yes, this is a tactic used by some resistant people to reset their sleep cycles, potentially in conjunction with melatonin. You skip a full night's sleep, with the hopes that you'll be tired enough the next night to fall asleep on your own and continue on from there. Unfortunately for some of us, not sleeping just gives us a hangover and we feel like garbage, only to proceed to another night of no sleep. Similarly, some have suggested if you're not asleep in 20 minutes, to get up and do something (e.g., read something boring). To me that sounds an awful lot like, you know, just being awake. I thought the idea was to tell your brain it's time to turn off? This idea seems like it's scraping the bottom of the barrel.
Warm milk: More of an old wives' tale but there may be some science to it based on anecdotes, if only due to placebo. Warm milk is relaxing and puts babies to sleep so why not you? Someone told me once about a recipe that put them to sleep called "dead soup", which combines bread with warm milk into a soup you eat. Sounds um, odd to say the least, but allegedly you "sleep like the dead". Didn't work for me but if you're down for downing that downer to get you down and out (yes, I'm incredibly lame), have a go.
So, if you're like me, and you've tried every damn thing in the book, and read this whole list, and none of these things work...well, I dunno what to tell ya. Hopefully attending testicular cancer support groups aren't in your future. *
*I would tell you the reference but remember the first rule is we don't talk about it.
(If you have anything else to add to this list - be it successes or failures - write it down below!)
This post is about all things sleep. And boy have I become an expert. However I still have not solved my own such problem. If you're struggling, and you've yet to find the solution, here is all the data I've compiled in my half-decade-long search for sound sleep. Mostly first-hand experience, but some things avoided for reasons detailed below. Here are three categories of sleep aides, in order of potency.
Natural solutions
5-HTP: Precursor to serotonin which is necessary to instigate the sleep cycle. If you're deficient in serotonin it will help. Otherwise not so much. It can also keep you awake for the same reason (serotonin can be stimulating). Be careful taking it if you're prone to mania.
Alcohol: Alright this is NOT a sustainable solution but technically it might help you sleep. I just feel like my list has to be exhaustive y'know. I don't recommend this method of knocking yourself out. Over time it will mess up your sleep, and it won't help you stay asleep.
Ashwagandha: Hard to spell. This is what's known as an "adaptogen". I have no idea how adaptogens work. Supposedly they lower what's too high and vice versa, but how your body or the herb knows how to do this beats me. Anyway, this is meant to regulate your cortisol and raise/lower it at appropriate times. For me personally, it kept me awake. So I'm not sure adaptogens are really a thing.
Cannabis: Good old weed. Mary Jane can work like the Sandman for some but for others she can cause paranoia and anxiety at best, hallucinations at worst. Long term this is a poor choice because it tends to disrupt deep sleep, which is the restorative kind, in favor of REM, or the dreaming kind. It could also potentially cause psychosis and bring out latent psychiatric disorders if you're predisposed. Yikes. Use with caution.
CBD: Cannabidiol, an extract of cannabis with no psychiatric properties or THC. Can be vaped, used as oil, or smoked, but the flower will have an amount of THC in it. You can buy this online when derived from hemp. Good for pain management too. It can work as an antipsychotic/anti-anxiety as well. Kind of weak for sleep though, at least in my experience.
Chamomile: Found in "Sleepytime"-type teas. Can help relax and calm your mind but probably won't put you to sleep, to say the least.
GABA: A somewhat lesser-known supplement that's used for anxiety. GABA is actually a neurotransmitter, the one that calms, as opposed to the one that, well, opposes it: glutamate. Some claim it can be addictive but there is not much evidence to support this. There is also some debate as to whether it can cross the BBB (blood-brain barrier) in supplement form. PharmaGABA is a specific type that is supposed to do this more effectively. GABA works best as an anti-anxiety supplement, and only relieves mild insomnia. It can have a bit of a rebound anxiety effect the following day.
Homeopathy: I'm gonna be honest, I think homeopathy is a hunk of junk, and it has about no science to prove it works. But it can work for some people, paradoxically. Its modus operandi is it takes an ingredient that provokes the symptom you're trying to eliminate, and waters it down to an undetectable minutiae and packages it in some water or a sugar pill. There are infinite concoctions of insomnia-related homeopathy and I don't care to list any of them for reasons stated.
Kava (kava): Like theanine, it works with GABA and acts as an anti-anxiety/relaxant. Commonly used in a tincture or drank as tea. Can have some trippy/recreational effects when taken in high doses.
Kavinace: Very strong and thus very addictive. Some people are behind this one but I compare it to benzos (see below). It will give you just as horrible a withdrawal, without the seizures. Panic attacks, possible sweating, the whole gamut. Once a week is probably the most often you wanna take this. It starts to lose effect after a while anyway.
L-Ornithine: An amino acid. I haven't tried this one so I guess it's still on my list, but I have a feeling it's not quite strong enough for my level of insomnia. It's supposed to be relaxing and eliminates ammonia in the gut (which, obviously, is inflammatory, and inflammation = insomnia). More of a stress reliever, methinks.
L-Theanine: Similar to GABA but does not have its own neurotransmitter, though it does work with GABA. Better used as a mild anxiety reliever than for sleep but can calm your thoughts down if that's what's keeping you up. However, if you have a sensitivity to GABA-ergic drugs this can produce a bit of a rebound effect the next day, like GABA itself.
L-Tryptophan: Sounds familiar because it's that ingredient in turkey that allegedly makes you tired after Thanksgiving dinner. That's actually more likely from eating massive amounts of food but anyway. It's another precursor to serotonin which is necessary for sleep. If you're not deficient in serotonin it probably won't work. If you are but can't covert tryptophan well it probably won't work.
Magnesium/CALM: CALM is a drink with magnesium in it. Magnesium is relaxing. It is an electrolyte so it's necessary anyway. Too much will give you the shits but it's not really dangerous unless you're mainlining it. It can calm your thoughts down and give you a feeling of relaxation but it won't relieve anything more than mild insomnia.
Melatonin: Yep, you got it, the number one Google solution for insomnia. More an insult than a suggestion for us hardcore insomnia sufferers. It's a natural hormone produced in your body when it gets dark out. Some people don't produce enough of it, in which case they need supplementation. No more than 3-5mg should be necessary. If you aren't lacking in it, you won't benefit from it. This is for people who need to reset their sleep cycles, mostly. Not hardcore insomniacs such as myself.
Progesterone (cream/suppository): Funnily enough this is actually a sex hormone. Yeah, I know, unusual to mention this in a sleeping post, but it is also relaxing, and if you're short on progesterone (hello PCOS) it can help calm you down when applied/taken at night. Be careful when messing with hormones. They are powerful and any alteration in one affects the rest of the hormone network too.
Rehmannia: This one is new to me, someone randomly mentioned it on a message board for Lyme disease regarding cortisol regulation. I have not tried it yet as it is not sold in stores. It's a Chinese herb that is supposed to lower cortisol, which as you will read below, can be a problem, so be sure this is your problem before treating it. It also alleges to give you more energy when you're depleted from stress/lack of sleep. So basically an adrenal supplement. No word on this one yet.
Schisandra: Like rehmannia, I'd never heard of this one either and have yet to try it or find it. It promotes calmness and relaxation, and like ashwagandha, is an adaptogen. No word from me on this one either.
Seriphos: Phosphatidyl serine, or phosphorylated serine. This, uh, chemical? Lowers your cortisol. Take it at night if you have high cortisol keeping you up. Be careful because too low cortisol is a problem too. It won't lower it to dangerous levels likely, but it can lower it enough to paradoxically raise your anxiety. If high cortisol/irregular diurnal cortisol cycles are keeping you awake this will help. Otherwise you're tampering with something that doesn't need tampering with.
Valerian root: Another GABA-ergic drug/herb. This one is a little more potent than the others. It has a strong taste and is usually taken as a tincture. It can definitely induce sleepiness and might be helpful for moderate insomnia or problems falling asleep.
Other miscellaneous relaxing supplements: Echinacea, holy basil, lemon balm, magnolia bark, passionflower, vitamin B6
OTC solutions
Benadryl: That little antihistamine you take when you have a cold is also supposed to help get you to sleep. Lots of antihistamines do this. It can however have the paradoxical effect of keeping you awake like it does for me. This one can be good if you suffer from MCAS/histamine intolerance that keeps you awake, but of course you're better off avoiding reactive foods/items in the first place.
Doxylamine: This is the "stay asleep" part of Unisom, which also includes benadryl (diphenhydramine). This is the one that helps me sleep best, after NyQuil.
NyQuil: Contains doxylamine, acetaminophen, and DXM (dextromethorphan). For some reason this one knocks me out the best, even though the actual ingredient for sleep is very low in dose - about 1/4 of the regular tablet dosage. Unfortunately can't be used long term. Acetaminophen is hard on the liver.
ZzzQuil: Don't be fooled, this is just Benadryl repackaged as a pricier sleep med.
Psychiatric/prescription solutions
Ambien: Everyone's favorite DUI drug. I've been a victim to it myself. Got my license suspended for about a year. Fun times. Personally all it does is put me in a hypnagogic state, but for some it's a lifesaver. Unfortunately long-term use is highly ill-advised due to addiction. It's considered a z-drug (see below), which is similar in mechanism to a benzo (see below again).
Antihistamines: Basically, hydroxyzine and Vistaril. Powerful antihistamines that will probably knock you out or at least make you fairly groggy. Side effects include sleep hangover and weight gain.
Antipsychotics: These are the second line of defense by psychiatrists when a patient has sleep issues, after short-term solutions. Antipsychotics work against dopamine which is a stimulating neurotransmitter. It may knock you out, or it may just make you really slow. Often lasts into the next day. Majorly problematic side effects of weight gain and metabolic syndrome.
Belsomra: A new sleep prescription med. Not much is known about this one. For me it did nothing. Probably not addictive, but also not very strong.
Benzos: If you're reading this blog and are considering, or on, benzos, I urge you to please stop. If you aren't already, you will become physically addicted to them and will need a higher and higher dose to achieve the same effect. After that the only way is off of them. At worst your doctor could yank you off them way too quickly, and you could actually die from a seizure. They will fuck your GABA receptors up and the withdrawal, unlike what doctors will tell you, consists of much more than a return of your anxiety/insomnia symptoms. There's a wonderful site called benzobuddies that provides support and a guideline to getting off them. Common ones are Ativan, Klonopin, Valium, and Xanax. See also: Z-drugs.
Beta blockers: These drugs should be used with caution because they slow down your heart rate and lower your blood pressure. If you have low blood pressure already they can be dangerous and potentially fatal. A slower/weaker heart beat will get you to sleep but this is not the best solution for obvious reasons.
Gabapentin: More used as a pain drug than a sleep drug but it can have relaxing effects for the former reason. It's a bit of a misnomer because it doesn't work on GABA. This is one I do not have experience purely because I hear the withdrawal is a bitch and well, been there done that with benzos.
Prazosin: If nightmares and/or PTSD are keeping you awake or causing pre-sleep anxiety, this will help. Its actual use is not related to sleep at all, but it does have the side effect of mediating negative thought patterns as it relieves hypertension. It's not a beta blocker but it does treat high blood pressure so once again, use with caution.
Trazodone: Atypical antidepressant that is no longer used for that reason but for sleep. This is the one I use. Now it only prevents me from not sleeping at all. I need an adjunct with it, usually NyQuil, much to my chagrin. It can be pretty sedating and last into the next day. It can also give some people some mild anxiety for some reason.
Xyrem: A.k.a. GHB a.k.a. the date-rape drug. Sure the company will tell you differently but no one's fooling anyone where I'm concerned. This "narcotic" is actually a very useful drug for narcolepsy. It costs upwards of a thousand dollars a month, ironically enough, seeing as the street version is probably one of the cheapest drugs you could find (not that I'd know). Only used in severe cases of insomnia and even then, good luck getting a prescription. You have to take two doses a night. It works similarly to benzos (on GABA receptors) so you can become addicted to it unfortunately, meaning it will stop working. Also has a not-so-sexy side effect of bed-wetting if taken in too high a dosage (again, not that I'd know).
Z-drugs: Ambien/zolpidem (above), Lunesta (zopiclone/eszopiclone), and Sonata (zaleplon) are all collectively known as Z-drugs due to their name. They work similarly to benzos and are just as addictive. Lunesta is known for giving your mouth a nasty metallic taste in the morning. Lunesta worked best for me personally but Ambien is the most popular. Once again, avoid these except in case of emergency.
Other methods
Acupuncture: Now I know some people lump this in with homeopathy, but there are actually a number of clinical studies showing some science behind it, based on using true acupuncture points versus randomly-placed needles. Acupuncture is based on energy meridians and is part of Chinese medicine. It's often covered by insurance to boot. I've tried it, and while it did help me relax/nap during the session, the effect did not carry over into the night. And believe me, I gave it plenty of tries before I gave up on it.
Camping: There is some science behind camping and sleep. Yes, for fellow Lyme sufferers camping is possibly the last thing on your mind, but if you're safe about it, it can be quite beneficial. A week spent falling asleep and waking up to natural light in an area off the grid can reset your sleep cycle potentially. My body for whatever reason resists replenishing its neurons by sleeping, so unfortunately sleeping outside for a few weeks resulted in, well, simply not sleeping for a few weeks.
Diet changes: There are a number of diet changes you can experiment with to help you sleep. Among them are eating carbs at night time (stimulates serotonin release), abstaining from carbs altogether (to moderate blood glucose which can cause midnight awakenings/cortisol dysregulation), intermittent fasting (blood glucose again), and most obviously, avoiding caffeine/stimulants (possibly including sugar). Cutting caffeine out, of course, is usually first on everyone's sleep-improving to-do list.
Epsom salt baths: Alright, this one is a bit of a toss-up science-wise. Epsom salt baths are known for their relaxation and healing properties, supposedly due to the magnesium in the salts being absorbed transdermally. However, science does not back this up (magnesium can't be absorbed through the skin). So the actual bath might just be the thing doing all the leg-work here. Anyway, this won't cure your sleep woes, but combined with other methods, can put you in a relaxed enough state to get you there.
Essential oils: I should probably lump this in with homeopathy. Essential oils (honestly have no clue why they're deemed "essential") are used for a wide variety of purposes. Lavender oil has relaxing properties to it when inhaled, supposedly, and I believe vanilla might as well. I'm not well-versed on these because they don't do much and their effects are primarily psychological in nature.
Exercise: This can be iffy. Exercise should exhaust you to the point of falling asleep when everything is working right. But when you have chronic insomnia, it's obviously not. Exercise with chronic illness can just make you physically exhausted, slowing you down for the rest of the day at best and overstimulating you at night at worst, paradoxically keeping you awake. For this reason it's best done in the morning. Yoga is the best exercise for Lyme/chronic illness patients as it is done at your own pace and not very intense (unless you do bikram/hot yoga, which is another story entirely).
Hypnosis: Yes, hypnosis. I've tried it and I'll spare you. This should be done if you have anxiety related to falling asleep and/or in general. If your thoughts are keeping you awake at night, or if the bed(room) is a source of anxiety consciously or subconsciously, this is a good option. But if your brain/body just refuses to fall asleep on its own terms, having someone trying to convince your subconscious to do so probably ain't gonna work. This stuff's expensive too. Meditation (below) would be a better option.
Massage: Massage is the ultimate relaxation technique, though this is also a costly habit, and you sure can't get one every day if you're on a budget, though you do need to sleep every day. Touch is an underrated form of healing and we all require it as humans. Whether traditional Swedish massage or deep tissue or hot stone or whatever other kinds are out there (sidebar: reiki "massage" isn't a massage, I'll leave that up to you to research), a massage can't hurt. Well, not unless you're full of knots, in which case I'm guessing you have something else going on keeping you awake.
Meditation: Another classic armchair psychiatrist prescription. Meditation works for some at calming the mind. The point is to sit upright and practice thinking nothing. As soon as a thought comes in, you let it go. Can be done with music or without.
Relaxation/affirmation tapes: These can lull you to sleep, or like me, the talking can keep your mind awake. Basically they are CDs (or Youtube videos) that repeat many affirmations over the course of an hour or more and the monotony is meant to bore you to sleep. They can be helpful if you're prone to subconscious suggestion. Or again, like me, they could just irritate you and keep you up.
Rife machine: The Rife machine was invented a few decades ago. The idea behind it is it emits EMF frequencies on specific wavelengths to kill specific pathogens. Somehow it treats every illness known to man. Sounds too good to be true, right? Mhm. I did get one of these (a cheap-ish spooky2 version) and tried it for a bit. At first I think the waves just kept me awake. After a while though it just seemed to do nothing. And then the machine stopped working. RIP. Proceed at your own risk.
Sleep deprivation: What! Depriving someone of sleep to help them sleep? That sounds like dieting before going on vacation if you ask me. But yes, this is a tactic used by some resistant people to reset their sleep cycles, potentially in conjunction with melatonin. You skip a full night's sleep, with the hopes that you'll be tired enough the next night to fall asleep on your own and continue on from there. Unfortunately for some of us, not sleeping just gives us a hangover and we feel like garbage, only to proceed to another night of no sleep. Similarly, some have suggested if you're not asleep in 20 minutes, to get up and do something (e.g., read something boring). To me that sounds an awful lot like, you know, just being awake. I thought the idea was to tell your brain it's time to turn off? This idea seems like it's scraping the bottom of the barrel.
Warm milk: More of an old wives' tale but there may be some science to it based on anecdotes, if only due to placebo. Warm milk is relaxing and puts babies to sleep so why not you? Someone told me once about a recipe that put them to sleep called "dead soup", which combines bread with warm milk into a soup you eat. Sounds um, odd to say the least, but allegedly you "sleep like the dead". Didn't work for me but if you're down for downing that downer to get you down and out (yes, I'm incredibly lame), have a go.
So, if you're like me, and you've tried every damn thing in the book, and read this whole list, and none of these things work...well, I dunno what to tell ya. Hopefully attending testicular cancer support groups aren't in your future. *
*I would tell you the reference but remember the first rule is we don't talk about it.
(If you have anything else to add to this list - be it successes or failures - write it down below!)
Thursday, November 15, 2018
my boring story
Ay. I have Lyme disease. Where do I even start? This blog is meant to educate others but also somewhat as a log of stuff I have learned, tried, accomplished, failed, I really don't know yet. But I guess I have to have some sort of intro post since I can't very well just start writing about how Lyme affects your kidneys or whatever.
Things started getting all fucked up in like 2012, when a bunch of events led me to basically just stop sleeping. I was put on a bunch of psych meds and put on a ton of weight in the process which led me to an eating disorder which is another story. I went into recovery the following year and that's when shit really hit the fan.
During "recovery", which was basically just weight restoration, I gained 10 pounds in a month. Which is not uncommon for people with eating disorders. But what wasn't common...I kept gaining. And gaining, and gaining. I went to a nutritionist each week. Within about three months I had gained 20 pounds over my initial "goal weight". I continued to gain weight for a year (!). All the while eating healthy, unappetizing food, which was just infuriating and exceedingly depressing. I got to my highest weight ever and never stepped out of the house. I refused to see anyone except my nutritionist. I couldn't even walk anymore I was so heavy. And I developed the paradoxical symptom of weight gain with exercise/exertion. This can happen when your body is inflamed, believe it or not. Most people did not, and told me that would help me lose weight. Even my own family. Definitely did nothing to help that eating disorder voice which never left. As if I weren't already trying every damn thing to lose it. Anyway.
During this time I was diagnosed with PCOS, and someone suggested I might have Lyme. I'd never gotten bit by a tick to my knowledge but I was at my wit's end with the lack of answers. So I went to the only LLMD in my area, and after taking two tests from Igenex, I was given the confirmed diagnosis. I tried antibiotics and they didn't seem to make a dint, so he considered me a complex case and sent me off to another (very expensive) doctor two hours away. She tried a few different things and gave me a diet to follow. Ultimately I treated myself using the Cowden protocol, and the diet cut almost all carbs out so I did end up losing most of the weight. Both of these things got me about 75% better. Timeline-wise we are in early 2015. It was around this time I stopped treating.
I started adding back in things to my diet, and over time it became somewhat unhealthy by Lyme standards (a big no-no is sugar, which feeds the bacteria). In summer of 2016 I ate an inordinate amount of sugary cereal for a few months. The end result was about 75% of my hair falling out. It continued to break off and fall out for about a year, in spite of reverting back to a (somewhat healthier) diet. Weight crept up over time but not nearly as much.
By mid 2017 I was diagnosed with legit hypothyroidism. I went on natural desiccated thyroid medication, after gaining over 10 pounds in a month. During this time I was eating out of taco trucks which I admit was not the best, but I was nowhere near eating an amount that could account for that gain. I have a theory the taco meat had parasites in it which I'll get to later. Yeah, disgusting I know.
By early 2018 I was back in a routine of exercising. I did hot yoga for a few months, got sick with the flu (probably due to over exertion to an extent), but picked it back up and went a few times a week for an hour. Flash forward to around July of this year. Somehow my digestion and metabolism took a nosedive, and my weight kept creeping up while my calories kept creeping down. I'd gained five pounds over the span of about as many months. Not a lot, but definitely too much for my taste, especially given the fact that last time this happened I became overweight.
So that's still where I'm at now. I started treating again several months ago with Buhner herbs to no avail, gave up on those, and started seeing my LLMD again in August. I've increased my thyroid hormone, decreased the variety of food I can eat (due to intolerances causing poor digestion/more weight gain), and have been treated for SIBO. Right now we are kind of at a loss as to what to do which is pretty damn discouraging. I no longer can walk very far, let alone do yoga. I cannot work for similar reasons. I have trouble with insomnia, still, and fatigue. And I've struggled with depression throughout this whole ordeal.
At the moment that's where my story ends. I'm going to use this blog to inform everyone things I've learned so far, as I said, and hopefully you'll learn something or benefit somehow or, I dunno, it won't be a complete waste of time at least. Thanks for reading this long-ass post if you made it this far.
Things started getting all fucked up in like 2012, when a bunch of events led me to basically just stop sleeping. I was put on a bunch of psych meds and put on a ton of weight in the process which led me to an eating disorder which is another story. I went into recovery the following year and that's when shit really hit the fan.
During "recovery", which was basically just weight restoration, I gained 10 pounds in a month. Which is not uncommon for people with eating disorders. But what wasn't common...I kept gaining. And gaining, and gaining. I went to a nutritionist each week. Within about three months I had gained 20 pounds over my initial "goal weight". I continued to gain weight for a year (!). All the while eating healthy, unappetizing food, which was just infuriating and exceedingly depressing. I got to my highest weight ever and never stepped out of the house. I refused to see anyone except my nutritionist. I couldn't even walk anymore I was so heavy. And I developed the paradoxical symptom of weight gain with exercise/exertion. This can happen when your body is inflamed, believe it or not. Most people did not, and told me that would help me lose weight. Even my own family. Definitely did nothing to help that eating disorder voice which never left. As if I weren't already trying every damn thing to lose it. Anyway.
During this time I was diagnosed with PCOS, and someone suggested I might have Lyme. I'd never gotten bit by a tick to my knowledge but I was at my wit's end with the lack of answers. So I went to the only LLMD in my area, and after taking two tests from Igenex, I was given the confirmed diagnosis. I tried antibiotics and they didn't seem to make a dint, so he considered me a complex case and sent me off to another (very expensive) doctor two hours away. She tried a few different things and gave me a diet to follow. Ultimately I treated myself using the Cowden protocol, and the diet cut almost all carbs out so I did end up losing most of the weight. Both of these things got me about 75% better. Timeline-wise we are in early 2015. It was around this time I stopped treating.
I started adding back in things to my diet, and over time it became somewhat unhealthy by Lyme standards (a big no-no is sugar, which feeds the bacteria). In summer of 2016 I ate an inordinate amount of sugary cereal for a few months. The end result was about 75% of my hair falling out. It continued to break off and fall out for about a year, in spite of reverting back to a (somewhat healthier) diet. Weight crept up over time but not nearly as much.
By mid 2017 I was diagnosed with legit hypothyroidism. I went on natural desiccated thyroid medication, after gaining over 10 pounds in a month. During this time I was eating out of taco trucks which I admit was not the best, but I was nowhere near eating an amount that could account for that gain. I have a theory the taco meat had parasites in it which I'll get to later. Yeah, disgusting I know.
By early 2018 I was back in a routine of exercising. I did hot yoga for a few months, got sick with the flu (probably due to over exertion to an extent), but picked it back up and went a few times a week for an hour. Flash forward to around July of this year. Somehow my digestion and metabolism took a nosedive, and my weight kept creeping up while my calories kept creeping down. I'd gained five pounds over the span of about as many months. Not a lot, but definitely too much for my taste, especially given the fact that last time this happened I became overweight.
So that's still where I'm at now. I started treating again several months ago with Buhner herbs to no avail, gave up on those, and started seeing my LLMD again in August. I've increased my thyroid hormone, decreased the variety of food I can eat (due to intolerances causing poor digestion/more weight gain), and have been treated for SIBO. Right now we are kind of at a loss as to what to do which is pretty damn discouraging. I no longer can walk very far, let alone do yoga. I cannot work for similar reasons. I have trouble with insomnia, still, and fatigue. And I've struggled with depression throughout this whole ordeal.
At the moment that's where my story ends. I'm going to use this blog to inform everyone things I've learned so far, as I said, and hopefully you'll learn something or benefit somehow or, I dunno, it won't be a complete waste of time at least. Thanks for reading this long-ass post if you made it this far.
Subscribe to:
Posts (Atom)