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parasomnias and cluster headaches (Read 719 times)
AubanBird
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parasomnias and cluster headaches
Oct 2nd, 2022 at 3:24pm
 
I credit this board for literally saving my life over a decade ago.  back then, I couldn't get a doctor to take me seriously when I described my symptoms to them. I am kind of in the same boat again, but from a slightly different problem that I think is related...

about a year ago, I started having a very tough time getting to sleep.  I have always suffered from weird sleep issues, but they ramped up in intensity last year. I start to drift off to sleep and I experience sleep paralysis and what I think is "exploding head syndrome". basically, I hear an extremely loud sound like rushing wind, like a tornado. if I don't immediately wake up, i start to feel my entire body vibrating in a really gross way...  it kinda reminds me of the feeling of having a limb fall asleep and then having it touched too much.  like the pins and needles feeling, but a gazillion times more intense.  if I don't immediately wake back up, this feeling gets more and more intense until I slip into sleep paralysis, and it turns into a lucid dream where I end up hallucinating anything that happens to come to mind.  anything I think about.

this is a problem because if am trying to wake back up, I often hallucinate that I did, only to realize that I am not actually awake. when I do start to wake up at some point, I am often waking up into that sleep paralysis state, and I can't seem to break out of it. I am usually fully conscious and aware that I am suffering sleep paralysis while my alarms are going off, but the only thing I can do is go back to sleep.

for the last several years, I have not been taking medications for cluster headaches beside vitamin D3. the cluster headache attacks that I do experience have been very mild and fairly infrequent. but this sleep problem is pretty bad right now, and it has significantly affected my ability to keep track of things in my day to day life.  I recently got diagnosed with ADHD, and the constant sleep deprivation has been making all of those symptoms worse.  when I think back, the last time I had such a difficult time functioning during the day was when I first started experiencing cluster headaches and was barely sleeping at all.

last year, when the seasons changed, I started having all these sleep problems and started taking a couple shots of vodka before bed, since vodka has never been a trigger and while I get terrible sleep, I at least got some sleep.  after a month and a half of this, I couldn't stand it anymore and decided to quit. I had tried over the counter sleep aids, but they made me sleep walk. when I went to ask for help for the sleep problems, I admitted that I had been using alcohol to get to sleep, so I was put into the Army's SUDC-C program.  well, it's been almost a year since I quit drinking, and this problem is just as present as it was before I started drinking to begin with. the only difference is that now, every time I bring it up, I get treated like my problems revolve around alcohol.  it's ironic, because I have been seeking medical help with my sleep problems for about a decade, and I was never taken seriously.  I was always referred to a half-assed sleep hygiene course, and told that I wouldn't be given medications until i had gone through that first.  well, I deployed so often in 3rd SFG that I was never able to complete one of those courses, and every time I came back, I had a different provider that wanted to go through the whole thing again, from the beginning. 

so I guess my question is this:  has anyone else had to deal with sleep paralysis and exploding head syndrome?  because of the way it seemed to come with the season change, I think it might be related to cluster headaches. the normal medications that people take for sleep absolutely do not work for me...  i keep getting treated like I'm looking to abuse medications every time I ask for medications (as opposed to kore sleep hygiene classes).  which I find funny, because I don't want a stronger version of things that make me drowsy. I don't want more of what doesn't work, and those don't work. all they do is make it hard for me to function while I am under their effect.  I feel very much like I did when I was asking for help with cluster headaches...  just because Excedrin migraine doesn't work for me doesn't mean I want Percocet...   Angry

when I read about these things online, the medications that people say help are not things that make you drowsy.  like cluster headaches, the stuff that seems to work for people are generally things that nobody would think to abuse. 

this has all made it very difficult for me to do my job.  when I don't get good sleep, my ADHD symptoms are ten times worse.  if I can't get this figured out, I will probably end up asking for a med board.  it is embarrassing and incredibly frustrating. and demoralizing.  I just want to get back to normal...
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« Last Edit: Oct 2nd, 2022 at 3:35pm by AubanBird »  
 
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AussieBrian
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Re: parasomnias and cluster headaches
Reply #1 - Oct 3rd, 2022 at 3:04am
 
I've spoken with numerous people who have similar issues assocated with ADHD and some are finding relief using a very mild amphetamine rather than a barbiturate.  Seems it allows them to focus all that extra energy more clearly and concentrate far better on the matter at hand.

One bloke in particular says he can't properly relax for his afternoon nap without first taking a tiny dose.

I have no first hand experience with this, of course,  and offer these thoughts purely as a matter you might consider.

A doctor I ain't,  but I mean well.

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pattik
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Re: parasomnias and cluster headaches
Reply #2 - Oct 5th, 2022 at 10:36am
 
AubanBird wrote on Oct 2nd, 2022 at 3:24pm:
so I guess my question is this:  has anyone else had to deal with sleep paralysis and exploding head syndrome? 


Greetings.
I'm also a long time user of the vitamin D regimen. I have had a couple of exploding head syndrome events over the last few years, but very isolated events. The sleep paralysis shows up rarely, when I wake from a light sleep stage and a dream. Paralysis is a normal condition during certain sleep stages.

Over the years, Batch has addressed the sleep thing to inform us of a nutrient approach to sleep issues. I have also looked into a similar approach for ADHD, because a family member has a mild case. You are already taking omega 3's, so look into increasing DHA for the ADHD. Also look into another precursor supplement, L-tyrosine. Please do your research on these supplements before jumping in.

As to the sleep, I have had some success with recurring sleep problems using a B-50 supplement for a few weeks at a time. According to Dr. Gominak, a neurologist Batch has recommended, we may need to replenish our gut bacteria and add the B vitamins for a short term to normalize the sleep hormones. She gives some guidelines on her website. I would take a look at the B vitamin suggestion as well as the melatonin. Sleep is a recurring challenge for me, and maybe this approach can help you too.
Gominak's site:

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Take care.
Patti
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Batch
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Re: parasomnias and cluster headaches
Reply #3 - Nov 10th, 2022 at 9:30am
 
Aubanbird my old friend,

It's been too long.  Howz my favorite supporter Akina?  Please give her a hug for me.

Pattik is spot on.  A healthy diet (Atkins-Ketogenic), lots of vitamin B complex, Melatonin and a good mix of friendly colonies in the microbiome by using a good probiotic daily to repopulate them can make a big difference in sleep patterns.  I'd add that a daily 15 minute exercise routine can also help achieve restful sleep.

What is your present 25(OH)D3 serum concentration?  There's no down-side and much to be gained by bumping serum 25(OH)D3 concentrations up around 150 ng/mL using a loading schedule of 100,000 IU/day for 6 days followed by a higher maintenance dose of at least 100,000 IU/week using the Bio-Tech D3-50.

The following link will take you to a study titled "Disassociation of Vitamin D’s Calcemic Activity and Non-calcemic Genomic Activity and Individual Responsiveness: A Randomized Controlled Double-Blind Clinical Trial."

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While the title of this study may be confusing, the results are very clear.  Higher doses of vitamin D3 activate higher numbers of vitamin D3 genes.  Specifically, they found a clear 25(OH)D3 dose response to maintenance doses of vitamin D3 in terms of the number of genes activated:

600 IU/day vitamin D3 activated 162 genes
4,000 IU/day vitamin D3 activated 320 genes
10,000 IU/day vitamin D3 activated 1289 genes

The authors of this study commented they should have used even higher doses of 20,000 IU/day and 30,000 IU/day to activate even more genes.

The bottom line from this study is clear, the higher the vitamin D3 dose, the greater number of genes activated.  Moreover as researchers have found 2,776 binding sites for the vitamin D receptor along the length of the human genome, there's room to improve the total genes activated by higher doses of vitamin D3.

The latest version of the basic anti-inflammatory regimen shown below is essentially the same as published here at CH.com in December of 2011. 

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That said, I have shifted vitamin D3 and vitamin B complex brands to gain higher bioavailability. Specifically, I shifted from the oil-based liquid soft gel vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules.  I've also added the Nutrasal Micro D3 nano emulsion taken sublingual during loading schedules. 

The Bio-Tech D3-50 has a bioequivalence easily twice that of the same dose of the oil-based liquid soft gel vitamin D3 formulations.   The sublingual Micro D3 has three to four times the bioequivalence of the liquid soft gel vitamin D3 formulations.  Moreover, when taken sublingual, it bypasses the GI tract passing directly into the blood stream in a matter of minutes
   
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I also shifted from the generic Vitamin B 50/100 complex Dr. Gominak suggested to the Methyl Folate + B complex, again for higher bioavailability.

If you opt for the loading schedule to elevate your serum 25(OH)D3, you'll need to double your magnesium by taking 400 mg with breakfast and a second 400 mg dose with the evening meal.  This provides 12 hours and 12 feet GI tract separation between doses.  This helps avoid the osmotic diarrhea associated with higher doses of magnesium.

It's also a good idea to see your PCP to obtain lab assays for your serum 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D3, Calcium and Parathyroid Hormone (PTH).  Ask that the orders for these labs be sent to the Quest Diagnostics facility nearest your home.  The tests to ask for include the following:

•      25-Hydroxyvitamin D3 [25(OH)D3]. Quest Diagnostics Test Name: QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS. Test Number 92888 and CPT Code 82306.
•      Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310

In March of this year I began suggesting a new second part of this treatment protocol initially to counteract immune system responses to allergens that prevent some CHers and many migraineurs from responding to this treatment protocol.   I call it the Antihistamine Full Monty as it replaces the Benadryl (Diphenhydramine HCL).  The Antihistamine Full Monty is a collection of supplements that among their many beneficial health properties like stimulating the vitamin D receptor (VDR) expression, they also function as antihistamines. 

Nearly all of these supplements are also found in most naturopathic and nutritional treatments for migraines.  The Full Monty is just as effective in combating the histamine released by allergic reactions and it has none of the drowsiness or adverse side effects associated with long term use of first-generation antihistamines.

We start the Antihistamine Full Monty with two (2) grams/day loading doses for one week of the first four supplements listed below.  You can drop back to a maintenance dose of one (1) gram/day and stay at that dose until the allergens are gone or greatly reduced.

A.      2 Grams/day Turmeric (Curcumin)
B.      2 Grams/day Quercetin
C.      2 Grans/day Resveratrol
D.      2 Grams/day Omega-3 Fish Oil (EPA and DHA)
E.      250 mcg/day Selenium
F.      1000 mg/day N-Acetyl Cysteine (NAC)
G.      5 to 10 mg/day Melatonin (Taken at bedtime)
H.      8 Grams/day vitamin C

If fish oil poses a problem, I've found DHA-1000, one of the two Omega-3 fatty acids, to be an excellent alternative.  I've used it this year with no problems.

I buy the bulk powdered vitamin C in 1 Kg or 2 lb jar as shown below and stir two level teaspoon measures (8 grams) in 12 oz of water.  I drink a gulp of this solution every two hours throughout the day until it is gone by bedtime.  This is the least expensive form of vitamin C at 3 to 4 cents/gram.  The liposomal vitamin C costs 8 to 9 cents/gram.

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Sleep paralysis is an interesting and frightening condition.  I experienced it twice while cramming for final exams at the University of Washington in 1966.  In both cases I'd been on cramming stints of 24 to 36 hours without any sleep and too much coffee. It started shortly after lying down to sleep and the symptoms were exactly the same as you described them complete with hallucinations.  That's the sum total of my experience with sleep paralysis so I've no experience treating it.

Sleep on the other hand is another story.  At 78 and having spent a good part of my adult life on aircraft carriers, I'm quite proficient at it, particularly the hard part, getting to sleep.

Your post indicates you've seen your doctors and done your homework so I won't go into sleep hygiene.  What I've found that helps me get to sleep rapidly is a high fat and carbohydrate snack  like a slice of cherry pie with ice cream 45 minutes to an hour prior to bed time. 

There's a shift in electrolytes as the stomach starts producing hydrochloric acid. There's also a spike in blood glucose followed by a spike in insulin as the carbohydrates reach the small intestine.  The insulin, in turn, increases the amount of seratonin and melatonin that flood the brain.  These two chemicals are associated with drowsiness (and, for that matter, happiness).  All of the above can trigger a food coma to aid in getting to sleep.

To recap, try the latest version of the anti-inflammatory regimen with the Antihistamine Full Monty.  Avoid Rx medications if possible.  Eat a high carbohydrate snack an hour prior to bedtime.

Take care and please keep us posted.

V/R, Batch
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AubanBird
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Re: parasomnias and cluster headaches
Reply #4 - Nov 21st, 2022 at 11:23am
 
well, I guess it's time for an update.  thank you all for the replies.  I think I have this one figured out now, and boy is it a weird one...

long story short, I most likely have a condition called Ehlers-Danlos Syndrome.  hypermobility type.  I have always known I have joint hypermobility, but I never thought that it was anything else...  just double jointed.  well, apparently it is REALLY common for people with joint hyper mobility to suffer from sleep problems, anxiety, ADHD symptoms, etc. 

what really stood out to me, when I started reading about it, was an allergic reaction that someone with EDS had that is incredibly rare... one that I share.  I don't know if I have mentioned it here, but I suffer from aquagenic urticaria from time to time.  it seems to come and go without reason, but if I stay in water for more than about 15 minutes, I am almost guaranteed to break out in hives.  if my skin stays wet for too long, it progresses to a nasty rash that resembles a poison ivy reaction.  people usually find out by seeing it (ahem, Akina) be cause nobody believes me when I just tell them, and I usually pass it off as "contact dermatitis".  how is this related?  because of something called "mast cell activation".  it's like having allergies without a specific allergen. it is also why I sometimes experience asthma like symptoms.  mast cell activation is one of the things that goes along with EDS. 

now, back to sleep issues...  basically, my sympathetic and parasympathetic nervous system got totally out of wack, and it made it impossible for me to sleep.  my blood pressure and heart rate would spike all over the place just as I tried to drift off because my body was basically too depleted to regulate itself, so I got stuck in this nightmare zone where I was literally too exhausted to sleep. 

I have had several doctors tell me that they are pretty much certain that I have EDS, they just need to do a bunch of tests to find out which flavor of EDS it is. there are 13 different types, and I most likely have the hypermobile type, but it's apparently possible to have more than one.

and that brings me back to the medication that is commonly given to EDS patients to get their nervous systems back to normal and stop their blood pressure from spiking and dropping and spiking amd dropping...

calcium channel blockers!  80 mg of verapamil 3 times a day, and suddenly I can sleep again.  I haven't slept this well in YEARS! the dosage is nowhere near as high as I needed the last time I took it (2016-2017) but it stopped the weird sensations that keep me from sleeping.  it was like someone was plucking the nerves behind my eyes all the time. it didn't hurt, but it was very jarring. I was so used to it that I didn't realize how much it was interfering with my ability to sleep.

it kind of makes me wonder if I had been experiencing shadows the entire time and didn't know it.  whatever the case, I'm just glad i found something that works. I have an appointment tomorrow morning to go over everything with my PCM so that she can make a list of specialists to refer me to for testing.  there is one type of EDS that would be really bad news and would leave me with a life expectancy under 50, but it's fortunately pretty rare. either way, I'll take whatever works. 

I mean, who takes verapamil for sleep? 

Shocked
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Re: parasomnias and cluster headaches
Reply #5 - Nov 21st, 2022 at 7:40pm
 
also wanted to say that I had my vitamin D3 levels tested about 6 months ago, and what do you know...  they were low.  my best guess is that I had managed to end up with some vitamin D3 that wasn't bioavailable, since the issue cleared up after I bought a new brand/bottle.  so, yeah, vitamin D3 might have been a part of it. 

I still feel like I have been "recovering"...  it's only been a few weeks since I started taking verapamil again. this time though, I noticed the effect almost immediately. I really don't know if cluster headaches has anything to do with it, but the nature of both beasts are that we don't know jack crap about them and they are both miserable. 

at least the verapamil is working.
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« Last Edit: Nov 21st, 2022 at 7:44pm by AubanBird »  
 
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Re: parasomnias and cluster headaches
Reply #6 - Nov 24th, 2022 at 5:57am
 
Have you considered CBD in edible or capsule/liquid form or even with THC ?
CBD has zero euphoric effects.
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« Last Edit: Nov 24th, 2022 at 5:57am by CCHInRemission »  
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AubanBird
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Re: parasomnias and cluster headaches
Reply #7 - Nov 26th, 2022 at 5:36pm
 
I'm in the army. it's completely off limits to me.
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Batch
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Re: parasomnias and cluster headaches
Reply #8 - Dec 2nd, 2022 at 12:46pm
 
How is Akina?
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