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Popoid

Aching eyelid and above eye after CH

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I am about a week into CH events, and almost all have been once a day, starting around the same time each night. The CH usually lasts a few hours, and I've tried sumatriptan with mixed results. Anyway, the past couple days, my face has ached in the daytime, and this is when the CH is not occurring. Has anyone experienced this heavy and achey feeling? I wonder if it is because muscles were too tense during the CH event, maybe they are worn out.

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Hi Popoid...welcome!

The quick answer(s) is YES and likely.... YES!  A cluster hit can be like a train wreck...not much that isn't affected. My hair used to hurt...and I'm bald!! 

You may wanna tell us more about yourself or ask anything....we aint Docs but we are professional patients..... 

Do you have a CH diagnosis? Do you have a headache specialist Doc...VERY important... many PCP's and even some neuros are unfamiliar with the condition and treatment. Any prevents tried (e.g. verapamil, Vitamin D3 regimen, magic mushrooms, psychedelics, seeds)? Aborts like the BEST: OXYGEN!  What form of sumatriptan are you using? Tried energy drinks (caffeine/taurine), exercise, or other? 

Best

Jon

 

Edited by jon019

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Thank you, jon019.

By the way, I looked at my left eyelid, where the CH always happens. It seems swollen. When the pain was happening, I think that I might have been tightening my orbicularis oculi (the facial muscle around the eye--I looked up this name from a diagram just now.) I hope that's the cause, not some new symptom. 

I should post my story in the right place, but I'm 44/m, and had three overall cycles. The very first in 2012, and I had no idea what it was--lasted a week. Then 2016, it started again. At first, doctors didn't know what it was, but one finally did. At first I was prescribed sumatriptan and ondanestron, and soon after that verapamil. The CH's kept going, even 2 weeks into the verapamil. Around that time I discovered this website, and read some posts by Batch about high dose Vitamin D. I went ahead and took some, and I noticed a few days later that the CH were less intense each time. Wonderful when it finally stopped. I took around 5K IUs per day after that until last year, I was monitoring my blood levels, and they kept creeping higher, 67ng/ml up from 53 soon after I started taking that dose. I reduced the dose to 2K/day. (Probably a big mistake). I thought it was sufficient, but in retrospect it probably wasn't. The nemesis from the past started last week after 2+ year break. Needless to say, after it was clearly happening, I started popping more vitamins. The past three days, I took at least 10K/day. I hope the VitD was the reason it ceased last time, so it should work again. I'm kind of skinny, so maybe I can't store much.

Sumatriptan: is the generic 50mg pill. When the pain starts, I look at the clock, and hope it starts working, but it seems to take forever, and sometimes doesn't help at all. It's best to take with empty or partially filled stomach, I think. I am concerned about side effects, so I really don't want to take this.

Threw up a couple times last week, and took ondanestron, and seemed to prevent it. As you might know, it causes bad constipation, so I decided to forgo that one, and roll the dice with the chance of vomiting.

I didn't try any other type of preventatives. I read someone's post about trying a hot water foot soak, and another thing about cannabis. If I feel the onset of an attack tonight, I will try to soak my feet in very hot water.

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Popoid,

If you're going the Imitrex (trex) route you definitely need the auto injectors.  Imitrex is mostly worthless in pill form as it takes too long to work.  Your doc should be able to prescribe the auto injectors.  They work in seconds to minutes.  Now on to the other side of the coin.  I stopped taking all that dr scripted garbage years ago because it either stopped working, or did more damage to my body that I was willing to accept.  

Stick around and read others stories on the board.  There's quite a few ways to diminish or really stop our CH.

Have you tried energy drinks yet?  Drinking a redbull, monster etc right at the onset of an attack can significantly reduce the attack pain.  Most any energy drink with Caffeine and Taurine (and possibly Guarana) in it works.

Also High flow Oxygen can stop an attack.  The quicker you can get on it at 15+ liters per minute, the faster it'll stop the attack.  It's best to get on it as you feel the attack coming, not waiting till the pain kicks in.  Once the pain kicks in, it often doesn't work, or takes a long time to stop the attack.

Cheers,

J

 

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Your eye can get red, swollen, heavy lidded. Just a multitude of things can remain.

Sometimes I notice that my eyelid feels heavy and that signals a likely attack. One cycle, I could count every hair on that quarter of my skull for months. Yes, oddball pains are common. If you look up the Trigeminal Nerve you will see the area it serves on each side of your head. All of that can be affected.

Load up on some energy shots or drinks. Slam one down at the very first sign of a hit coming. Caffeine is your friend with this mess. Get your doctor to prescribe O2!!! Your best relief is in that tank!! :)

I have used the hot water method a lot. Make it very hot and put your feet into it. Add more hot as you go so it does not go cold on you. At times, I just got in and cooked!!

You want your D3 values up around 100. At least 80 I think. Have you been doing the entire Regimen or just D3? The Regimen has given some patients complete relief from CH. Others experience a reduction in pain levels and a slowing of the ramp up to a full hit.

The pills are too slow acting for Chers'. Great for migraines though. You should get the injectable for CH. What amount of Verap are you taking? We can take really high doses of that to get relief. A steroid taper pack is a big help as a bridging med while the Verap builds up in your system.

If you are thinking of alternatives, post about that on the closed boards: Share your Busting Stories and Theory and Implementation. Those are closed to Google and the other Bots out there. You will get a lot more input.

 

Haha. I see that THMH has replied. ;)

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Hey Popoid,

We know what you're going through and the good news is it doesn't need to be that way.  You're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH attacks.

Download a copy of the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors and discuss it with your PCP when you ask for the lab test of your serum 25(OH)D.  That's the serum level metabolite of vitamin D3 that's used to measure its status.

The pain around your eye after the pain phase of a CH attack is called cutaneous allodynia,  a pain response from stimuli which do not normally provoke pain. It is part of the cluster headache syndrome.

Take care and please keep us posted.

V/R, Batch

 

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Hi Popoid....some other thoughts...

...re D3 sounds like you just need to reload and see what happens...

...as already stated the pill form of sumatriptan is worthless for an expedient abort (some find help as a preventive, especially for sleep)..ya need the injector OR a nasal spray...I had excellent results with Zomig 5 mg NS....99% effective within 10 mins...18 hr 'free" time...no side effects...

...still concerned re your diagnosis.... and what are your Docs qualifications....

….vomiting is rare for CH...have never heard of the need for anti-emetic...more common with migraine...tho not at all unheard of to have multiple headache conditions at the same time (reason for my previous question re diagnosis). while there are many similar treatments....not all apply to either condition or multiple...

….have used several anti-emetics for other reasons...Ondansetron was worthless....Ativan much more successful...YMMV

….the things I have done to my head during a hit would be classified as "assault" by an onlooker...distractive pain I suppose...you pay later..

...some find help with the hottest shower (on the head) they can stand...some the coldest (or a bag of peas or ice pack)...some alternate hot/cold..

GET YOURSELF SOME OXYGEN !!!!  PROPER MASK AND PROPER TECHNIQUE( we can post links). It has gotta be a prescription from your Doc...and if he/she won't or doesn't know....ya need a NEW Doc. It's the fastest, relativelycheap, easiest, no side effect, PRIMARY medically known and accepted abortive treatment...

Best

Jon

Edited by jon019

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Batch, thanks for your comments. I bought a fresh bottle of 5K D3 pills, tossed by 2K bottle, in case the pills had lost potency (from last year). Have you ever heard of that? Also taking 240mg MgGlycinate, and 200ug MK-7 daily. I don't have fish oil on hand, but will try to eat more fish. I hate looking for fish oil pills--so many different kinds. You are the one whose advice I followed in 2016, and the CH's disappeared.  I am still hopeful that they will go away this time, and soon. The Vitamin D solution does make sense, given all the facts. One thing I don't understand is why the water soluble type that you mentioned would have a quick effect. Absorption might be faster, but doesn't it have to be metabolized just like the solid pills? So it should save some hours, but not be able to act to staving off an attack?

 

Jon, thanks for your ideas. I gave up on the sumatriptan pill--took too long to act. Even if I had an injector, I might not use it. Just worried that pumping that stuff will mess me up eventually. I moved last year from California, and don't have a neurologist nearby, but plan to. I also wish I had cannabis to try--not available where I live now.  I do not know why I am sometimes nauseated, but it is a chain reaction of some sort. I might seek the O2 tank route, but could be an uphill battle, implied by some others' posts. I did try O2 once in the ER, and it didn't help.  The diagnoses was done first by a ophalmologist. Up til then I had several eye exams that found nothing wrong to explain the eye pain. I have no doubts...symptoms all align with Mayo Clinic description: pain around the eye, droopy eyelid, tearing. Episodes usually at night..

By the way, I had a CH onset this morning for some reason. I was able to get some relief by getting into a hot bath after around 10 minutes. I think it was RussM wrote about putting feet into hot water. I tried that, but was shivering, so just got in. I think this will become my first line response if I am at home.

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7 hours ago, Popoid said:

Batch, thanks for your comments....

Is it ever thus!!...….….:D

Jon, thanks for your ideas. I gave up on the sumatriptan pill--took too long to act. Even if I had an injector, I might not use it. Just worried that pumping that stuff will mess me up eventually.

Understandable...and it IS a very powerful med....but sometimes it's the ONLY thing...never say never!  Lotsa folks find splitting the injectable dose from 6 to 2 mg gives the same abortive effect with minimized side effects. I'd  at least try the nasal spray version of suma and zomiltriptan (Zomig 5 mg NS)….I switched to Zomig because of the "ooky" side effects of suma….'bout the same cost but (for ME) just as quick, long lasting, w/ minimal side effects. If ya find a headache doc or clinic they might even give ya the first one for "free" (yes I'm from the 60's)…...

I moved last year from California, and don't have a neurologist nearby, but plan to.

Headache SPECIALIST/CLINIC!...even if ya have to travel...most neuros will be unfamiliar with CH...some PATHETICALLY so. An uninformed Doc is worse than NO Doc....

I also wish I had cannabis to try--not available where I live now. 

Thoughts on this range the WHOLE spectrum...from "no way" to "ALL the way".... the ONLY way to know is to try (did I say 60's)...lately reports of CBD helpfulness for a variety of ailments...……...

I do not know why I am sometimes nauseated, but it is a chain reaction of some sort.

It is what it is....I've seen some folks say it actually lessens or aborts the attack. Never had the "pleasure" myself.  I suspect could be your body's attempt at "all hands on deck...we got a problem". CH itself is so rare that a rarity within a rarity is jus about normal...…………...

I might seek the O2 tank route, but could be an uphill battle, implied by some others' posts. I did try O2 once in the ER, and it didn't help. 

Old saying about an addiction...."one is too many and a thousand is not enough". In THIS case...once aint enough...especially in an awkward setting with likely improper mask and technique. I will say this once...STRONGLY...then stop bothering. Oxygen is the best, quickest, relatively cheapest, portable, side effect free abortive that the Good Lord ever gifted to clusterheads...and you SHOULD become addicted. Because every day after you do you will despair at the "why did I wait?". it saved my life and/or my sanity. On another board it compromised about every other word in many posts...it is really important..………………….Get a script, a rig, a non rebreather mask and read up on the proper techniques (available in the files section here and at ch.com...…………)

BTW...CH truly is a BITCH...we get it but we gotta say somethin' somewheres...don't get leery of the battle just because we may whinge a little in a post....once in a while....B)

The diagnoses was done first by a ophalmologist.

And a Prince of a Pratitioner he/she is!....mine by a dentist.....5  "regulars" and several neuros could not even diagnose let alone treat (that's typical)...…………..which is WHY you need a specialist…………….

I have no doubts...symptoms all align with Mayo Clinic description: pain around the eye, droopy eyelid, tearing. Episodes usually at night..

...we can relate to that....sorry the beast found you...……..

Best

Jon

 

Edited by jon019

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Hey Popoid,

Absorption and metabolism of vitamin D3 are both important parts of its pharmacokinetics (what the body does to vitamin D3).  The fascinating part of this discussion is the metabolism (hydroxylation) of vitamin D3 that provides the CH preventative effect takes place within neurons in our trigeminal ganglia. 

There are several moving parts to this mechanism of action that all start with absorption of vitamin D3 from the GI tract into the blood stream.  The next step is to pass through the blood brain barrier (BBB) lining arteries and capillaries within the brain.  Once the vitamin D3 molecule has passed through the BBB it enters neurons within our trigeminal ganglia where two enzymes hydroxylate (add a hydroxyl radical [OH] to form 25-Hydroxy vitamin D3 and a second hydroxyl radical to form 1,25(OH)2D3.

This is where the real magic of vitamin D3 begins...  1,25(OH)2D3 is the genetically active vitamin D3 metabolite that attaches to a vitamin D receptor (VDR) on a genetic strand. This initializes what's called genetic expression.  This is essentially where vitamin D3 unlocks the cell's genetic library of instructions and the cell starts to execute them.  These instructions include signaling the cell the replicate, differentiate, form autocrine and paracrine signaling peptides and apoptosis (programmed cell death - what we hope happens to cancer cells).  It's the autocrine and paracrine signaling that down regulates the expression of calcitonin gene-related peptide (CGRP) and other neuroactive peptides responsible for the neurogenic inflammation and pain we know as CH.

The water soluble formulation of vitamin D3 available in Bio-Tech D3-50 or D3-5 may be responsible for the faster and more effective action in preventing CH.

Hope this helps.

Take care,

V/R, Batch

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Hi Guys,

I am starting to get optimistic now. Finally the severity of the CH symptoms has weakened noticeably. Overall, it's lasted 3 weeks. Finally, the past 3 nights in a row, I had no episodes of CH. However, the achey face feeling--the same area of head--still noticeable when I awaken in the morning, and gradually diminishes late morning. It looks like some sort of biorhythmic cycle still continues.  I hope it completely goes away soon.

With Batch's recommendation, I added fish oil to the daily regimen. Now taking daily:

10K D3, 240mg MgGlycinate, 2.2g fish oil (1.2g EPA, 0.5g DHA), 200ug MK-7, and a multivitamin.

 

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Drink lots of water and maybe add benadryl to the rest of your vitamin routine. I added the benadryl 3 times a day at 25mg each and that helped with that stuffy head feeling in the AM. 

5hour energy drinks also help take that feeling away for me also. 

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