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Jimmy Martinez

very very light cluster headaches? does anyone get these?

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Hi everyone, I'm almost 46 and I've had 3 cluster "cycles" in the last 7 or 8 years. Each cycle ran about 2-3 months and during the cycle I did everything except what people call "busting".

The last cycle ended late July 2017 and I've been pain free since. Wow. That best 14 months of my life. 

In the last 3 days I've been awoken in the middle of the night with a very, very light, dull ache behind my left eye. The last few nights I just notice it and go back to bed. But last night it started to get a little uncomfortable so took an Advil and in 10 minutes I was asleep no problem.

In LA where I am it's humid and warm and there is a rainstorm coming in the next day or so. I'm guessing the cycles I've had in the past were weather related (weather changing....usually rain or fall type weather). 

My question is, are there tiny little cluster headaches where there isn't really any pain but instead enough of a sensation where you are awakened and feel some very light pressure?

What it feels like to me is the early onset sensation t of a full blown attack but the attack doesn't come. I take vitamin D and B religiously and I'm going to start to drink a glass of water every hour.  

Coincidentally, yesterday was the first time in a very long while I went to the gym. Then last night, I had just enough of a discomfort to take an Advil

If anyone has any thoughts or recommendations I would be grateful.

The last time I broke the cycle I prayed and prayed and chanted. I chant a Buddhist chant called "Nam Myoho Renge Kyo". I also took Verapamil.

Thank you and I'm sending everyone lots of prayers for great health and no pain.

Jimmy-

 

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Jimmy,

What you're describing is very common.  There's nothing in the official Dr literature, but those of us with CH know them very well.  We call them Shadows.  They come in many different forms and variations.  They can be a weird, or bad feeling with nothing else associated.  They can be mild headaches in the area of our CH, but not the same pain.  Some people get sore and stiff necks or shoulders.  Sometimes we just feel Off, with no real description.  For the most part these are all called shadows, and most of us get one type or another before our CH starts.

I don't mean to be the bearer of bad news, so sorry, but it's good you might be able to arm yourself early.  Those of us that bust often take a preventative dose when the shadows start.  

During shadows I use the chant, Ong Namo Guru Dev Namo sometimes. :)

PFW,

J

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^^^^^^^^ what J said! 

…..and chanting works...although The Buddha might not have appreciated my version during a bad hit: EVERY foul word I have ever heard...and some I just made up..REPEATED over and over and over again! Out of consideration for the neighbors...I carried a pillow around the room to shout into...it got soggy...……...:P

Best

Jon

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Thank you J and Jon for your help! I called my doctor who is supposedly THE headache doctor in LA and he said to take Melatonin (9MG) for a few weeks. You are right, my neck and shoulders are stiff. I have been sober for 15 years so busting would be a huge disappointment for me in so many ways. I'm gonna pray and take the Melatonin and hopefully I can avert an attack.

wishing you guys several lifetimes of happiness and health,

 

Jimmy- 

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Jimmy,

Glad to hear of your sobriety.  I definitely support your decision!

On the melatonin:  Sometimes it helps with night attacks, but does nothing to stop a cycle, or help with day attacks.  I don't recommend it (because it caused me some bad heart issues several years ago,.. )  But..  Lots of people take verapamil that helps them through some cycles.  Starting early in your cycle might be good to get it built up in your system. 

J

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Hey Jimmy,

How much vitamin D3 are you taking and have you had the 25(OH)D lab test lately?  Most CHers taking the anti-inflammatory regimen need 10,000 IU/day vitamin D3 and an average serum 25(OH)D concentration response around 80 ng/mL for a CH pain free response.  The following chart illustrates the normal distribution and cumulative probability of 25(OH)D lab results reported by 257 CHers in the online survey taking an average of 10,000 IU/day vitamin D3.

4rNVPRE.jpg

The blue S-shaped sigmoid cumulative probability curve provides a good approximation of dose response as measured by serum 25(OH)D concentration.  In simple terms, as 90% of CHers reporting in this survey responded at a 25(OH)D serum concentration of 120 ng/mL.  What this curve tells us is if the CHer hasn't responded at a lower 25(OH)D serum concentration taking 10,000 IU/day vitamin D3, increasing the vitamin D3 dose above 10,000 IU/day for a higher 25(OH)D response will likely result in a significant reduction or complete cessation of CH.

Take care and please keep us posted.

V/R, Batch

 

 

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Hello Jimmy,

These small headaches, or shadows or onsets as some call them are the prerequisite for me for a cluster attack to appear. They always wake me up 2 am sharp and they feel like a migraine onset. They are not so strong and sometimes I barely notice it. BUT... if I wake up in the morning and they are still there, they will ramp up slowly in the afternoon and trigger cluster headache attacks (there preferred time seems to be 3 pm in the afternoon). Not one or two but at least 10 (15 to 120 min each with intervals of 30 min to maximum 2 hours). It can go on for 1 max 2 days until they abruptly stop.

The weird thing is that I have to try to abort these onsets at all cost. If I manage to do that, no cluster attacks will come for that day. Even more weird is that only oxygen seems to achieve that. Excedrin migraine will take them away but once the pill finished working, they come back. Same with 2,5 mg zolmitriptan orodispensible. Only oxygen seems to do the trick and by just killing off these onsets or premonitories, as they call that in scientific terms, can keep me cluster free for very long time. So lucky for me, oxygen works as a kind of preventive...

So in short, yes they do exist. See https://www.ncbi.nlm.nih.gov/pubmed/9533604

But I do not know how common it is.

Hope that helps !

siegfried

 

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Thank you friends for your help! Last night I got a full blown attack after about 2 weeks of little "shadows". I had to find some old Verapamil and some old Ritatriptan to take as the pain was heavy and constant throughout the night after trying 2 rounds of advil. This is a horrible horrible ailment. 

Batch: thank you for your advice! I've been taking on average 4 to 5 Vitamin D3 pills (10K MG each) every day for over a year now. I also take fish oil, vitamin A, B, C, Magnesium, Calcium, and B-12, and a multivitamin. I'll bump up my VD3 intake to 6 or 7 a day. 

Siegfried: Thank you for the information. Oxygen works only as a temporary relief for a few minutes. It doesn't seem to kill the pain long term. I'm so glad it works for you. I will probably have to get some as I am sadly expecting a cycle here.

J: thanks for there tip on the Melatonin. I'll give that a try by not taking it. 

I seem to be getting these attacks every 18-20 months since I was 37 and now I'm 46 next month. 

It rained here last week. other than that I can't figure out what the cause is. I'm a little stressed but nothing more than usual.

I'm eating healthy. Drinking decaf coffee. getting good rest.

Very sad and frustrating but I will beat this!

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Hey Jimmy! Have you tried an energy drink or shot at the first sign of a hit? It can really help. Actually, caffeine is our friend. ;)

I think that THMH was referring to not taking Verapamil, not Melatonin. He will straighten me out if I am wrong. He can't take Verap due to heart response to it.

If you do the full D3 Regimen, including the Benadryl, I would not suggest you take Benaryl and Melatonin both at night. You need to see how the Benadryl affects you first I think. At any reate, they will both make you sleepy and banging around in the night is not a good feeling. Try the Benadryl and then add Melatonin later if you need it.

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Thank you Spiny! My attacks come 90% at the middle of the night so if I take a caffeine blast, I won't get any sleep at all but at least I can hopefully abort the attack which is more important. I'm taking Verapamil now and it's working beautifully. I'm not getting any attacks but I feel the Verapamil sort of tightens my chest and isn't helping my heart. I'm going to ask my doctor if I can stop taking it, but I don't want it to cause the attacks to come back. I'm taking the full D# regimen except the Vitamin K2 which I will get. 

I had shadows for about 2 weeks, nothing bad. The last week I have a full on banger where I needed a maxalt to knock it back into hell.

Since then I've been taking varapmil about 5 or 6 days now and no headaches. But I don't know how long I should keep taking it. 

If I had to guess, I think the change in weather is what causing my attacks. Recently it rained here about 2 weeks ago followed  by the windy santa anna winds that are dry and kick up a lot of stuff. If I saw a weather change coming, I could take some sort of allergy medication or preventative medication so a cycle doesn't start.

I'm just grateful that Verapamil works but it feel like it's rough stuff on my body. 

I hope and pray that soon there can be a cure for this because it's such a bizarre condition and rare. Why me I ask myself! 

But I know I have it good compared to some people who experience more frequent attacks. 

I'd love to know if anyone out there has beaten this and have been CH FREE for beyond 5 years....and how they did it!

When I'm in a cycle I fell like the world stops and every ounce of energy I have is 100% committed to beating it and finding some sort of magical pill or cure.

I feel like a cure is coming! I really do. I read somewhere that sleep patterns and exposure to sunlight also could be a major trigger.

Take care Spiny and I'm thinking about you and everyone else on this board every day. Whether I'm in a cycle or not. Your pain and struggle is my pain and I'm praying every day literally for you guys to be pain free forever. I feel like besides my family being healthy and safe, the only thing that I really care about is not having a CH. They are bad to the bone!

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Jimmy,

I've been a CHer for more than 25 years.  It started as episodic then switched to chronic in 2004.  I've been essentially CH pain free since developing and starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors in October of 2010.  I say essentially as 2 to 3 times a year I intentionally stop taking vitamin D3 but take the rest of this regimen until I feel a CH.  It can take as little as 3 days and as long as 35 days for my CH to return depending on the pollen/mold spore count.  A quick 50,000 IU loading dose and I'm usually back CH pain free in less than 24 hours.  I also have oxygen handy...  

I normally maintain my serum 25(OH)D between 100 and 120 ng/mL.  However, when the pollen and mold spore count goes up, I've needed to pumped it as high as 188 ng/mL by taking an average of 30,000 IU/day vitamin D3.  I have frequent labs for 25(OH)D, calcium and PTH.  My calcium levels have always stayed within their normal reference range so no vitamin D3 intoxication/toxicity.  My PCP is OK with this as all my other labs are in the green.

I switched from the liquid soft gel vitamin D3 formulation to the Bio-Tech D3-50 (50,000 IU water soluble vitamin D3 capsules) in late June of this year.  I take one of these capsules a week for an average daily dose of 7,000 IU/day.  This keeps me comfortably CH pain free.  My most recent round of lab tests from last week had my serum 25(OH)D at 181 ng/mL with labs for calcium and PTH well within their normal reference range.

You might want to consider switching to the Bio-Tech D3-50.  I've found it to be faster acting with a higher bioavailability at a lower dose than the liquid soft gel vitamin D3 formulations.  I order it from amazon.com

I1fb9Dm.jpg

Take care and please keep us posted.

V/R, Batch

 

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Hey Jimmy,  I had a ten year break from them. No reason as to how or why, but they just vanished. And when they returned, I was Episodic , not Chronic. Untreated, I will have a 6 -8 month cycle that starts in September.

I will say that during my years as a Chronic they were milder than what I get now. Now they are screamers. So lower frequency, but much higher leel of pain is my part of the elephant now. And I am extremely sensitive to barometric pressure drops now. So, if the weather is going hinky I know to prepare.

When I was young they were 20 minutes long - always. And only daytime hits. Now they last 2.25 hours if untreated. They start at bedtime and run till 6am every night. Untreated they last 2.25 hours and I get a fifteen minute break before the next hit. So, just pointing out that the beast will change all by itself, if and when it gets ready. We are just along for the ride. It teaches you be viligent at all times.

So yes, you can get a reprieve of many years.

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Thank you Batch and spiny for your replies. You guys have been so strong and have endured so much pain. I'm guessing you guys don't "bust" at all. 

I promise every day for the rest of my life to chant and pray for you guys to be pain free and for there to be a cure.

There has to be a rhyme or reason to this. There has to be a cause to this effect.

I wonder what constitutes a barometric pressure drop? higher elevations, rain coming, windy weather.. 

Tonight I took so CBD oil (no THC) and I'm praying for a good night's sleep. 

Take good care and we will beat this together! 

Jimmy-

 

 

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Barometric pressure drop is caused by everything you named plus flying. I asked for a good nautical barometer for Christmas one year it is so stinking important! I live on a mountain, so traveling is always an issue for me. Watch your weather fronts moving in for low pressure fronts.

All the best to you!! I hope you got a good nights sleep too. :)

 

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