Newbie - Clusters and lower / irregular heartbeat?

[3800sc]

Read post 2 for background on my (short) journey. 

Hello everyone, unfortunately I am new to the cluster headaches. Started 1 month ago while on vacation, had to cut it short to get back home to find out what is going on. Unfortunately doctors around here give me the run around. 

I think I found my main trigger after 28 days straight of these things, cut thc out completely. I have been a Marijuana user for 15 years so it took a while to even consider this as a trigger. But so far I have had 2 complete days without a single cluster. Amazing feeling! 

One thing I have noticed is that right during the onset of one of these I feel some palpitations, then when I measure my heart rate it goes from my normal 85 bpm resting rate all the way down to 45 to 55 bpm with palpitations. As if the headaches weren't scarry enough! 

 

Has anyone else noticed palpitations or decreased heart rate? 

 

Thanks for your time, I look forward to talking with someone who knows what I am going through... 

 

Best regards, 

Chuck

[3800sc]

Just to add, I have not been completely 'diagnosed' yet by medical professionals. But I do have my PhD in Google. 

 

Could it be a coincidence that when I stopped smoking Marijuana, my clusters stopped? 

 

I've had kidney stones before and I thought that pain was a 10 until the first cluster I got....

I thought it was just a migraine but I've never really had a migraine before, nor really even headaches. But each day after that second headache, (22 hours like clock work) I was terrified all day, counting down the hours because I knew what was coming. First sign is alway a feeling like a bolt of lightning striking the right side of my head, a couple inches directly behind the bone under my eye. Right after that the pain moves behind my right eye, then 8 minutes in its a TRUE 10 of 10 on the pain scale and the whole right side of my head hurts; my jaw, eye, top/side/back of head. It reduces me to a moaning, whining, sometimes crying grown man (34 year old) in the fetal position in the shower. Then an hour later most days, it's gone, like snapping my fingers, from a 10 to 0. Crazy! 

After 4 weeks of this, I went about 36 hours without it coming on to a 10, was only about a 2. But then my last headache which was 2 days ago was even worse than all the others! Super bad, wanted to die type of pain. Felt like a pound of C4 explosives kept exploding inside my head every 2 seconds for almost 2 hours!! 

That's what made me put the THC down,.

But then the next day I only had a very minor headache but on the LEFT side, only temple area, no eye pain = no cluster. And today I was still in fear all day, but no headache ever came.. I hope this cycle is done but have no way of knowing. 

 

Does this sound like normal cycles or clusters? 

[CHfather]

Chuck, it sounds like CH pain, for sure, and the timing is CH-like.  I don't think we've seen anyone here say that they have discovered a link between marijuana smoking and CH (and there are more than a few here who use it), but CH experiences are so different that it can't be dismissed.  CBD oil, interesting, has been an effective abortive or preventive for many people.

In the short run, if you're still getting attacks you could try quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Often that reduces the severity of an attack or at least reduces its severity.  Read as much as you can in these pages for other ideas.  And of course try to get to a headache center, where you're most likely to find a doctor who can give you a good diagnosis and possibly good prescriptions.  Most general practice doctors and even most general neurologists are bad at diagnosing and treating CH.

Consider the D3 regimen, which probably will help.  Read about it in the ClusterBuster Files section, and look through some of the other files there, too.

[Oli]

Re the  Marijuana, during my last cycle (3-4 years ago) the common discussion was that "weed was a trigger" the conversation wasn't very nuanced and i suspect had more emotion than scientific backing - there were some people claiming it was helping them hugely. No one could talk about specific strains or indica vs sativa with any confidence.

I have now read that some strains are indeed triggers, but also that some a huge help in busting shadows or just keeping the peak pain level down.

Much of what i've read in anecdotal, but last week i experienced it first hand. Like you've i've smoke 15 years +, but this year i have switched how i obtain it and now know with much more certainty what i'm smoking. 

I had an 80% indica strain supposedly high in cbd, afghanii believe - and it was like someone had just popped the roof of my skull and let all pressure out. It was almost as effective as oxygen. 
What i have currently, a hybrid amnesia haze,  if i have more than 2 or 3 joints before bed, i'll be up with a CH attack within 2 hours.
I don't have any left to re-try the indica theory though - so not remotely scientific, but more anecdotal evidence. Your mileage may vary.

[HazBaz]

When I stopped smoking weed (heavily) aged 25 due to anxiety, my CHs started that same year. Took years to be properly diagnosed. 

Stopping smoking tobacco 2.5 yrs ago has lessened the frequency/pain of the cycles. Well, until this week...

Everyone is different... with some common shared triggers/experiences. Whatever works is worth working with. 

[3800sc]

Thank you all for your replys, they are much appreciated! 

Unfortunately after 3 days of no pain, I cannot get more than 2 hours of sleep without being rudely awaken by the feeling of a hot knife being thrust into my right eyeball... So sad. However, the pain only reaches a 4 or 5 before it tapers off within 15 minutes. Then I start the sleep / awake cycle again, 3 to 4 times per night, each time being woken after an hour or 2 with the same pain, same intensity and duration. 

I am so greatfull to have you all and this forum as no one close to me has any idea what I am going through, of course I haven't been suffering nearly as long as 99.9% of you but the resources and information I have learned over the past week has been absolutely invaluable. 

I have finally figured out what 'busting' is after reading about 100 threads, haha, didn't think I was that slow but all well. So I will start busting this thing before it returns to beast mode like it had been all month. 

If I can get this under "control" within a few months of popping my CH cherry I will be forever indebted to this community. 

 

Thank you all again, 

Chuck 

[FunTimes]

3800

I would say get on the D3 regimen and add Benadryl during the day and Melatonin at bed time. When I am being hit at night I will sometimes sleep in a recliner keeping my head up above the rest of my body. This will sometimes get me 4 or 5 hours of solid sleep before being woken up with a attack. as far as the Melatonin I take up to 20-30 mg at bed time and this also helps but everyone is different so you might want to start out lower and work your way up to a dose that works best for you. If you add Benadryl to the D3 I would not take that at night with the Melatonin until you know how your body is going to handle everything. 

[3800sc]

FunTimes

Thanks for the tips, very much appreciated! 

Unfortunately I'm still awake since I had to drink a 5 hr energy to stop the last one. I think I only got 4 maybe 5 hours of sleep since I woke up Sunday morning. I missed work yesterday, but I have to get some jobs done today (self-employed, luckily). So I will definitely heed your advice on the melatonin tonight and definitely get on the D3 reg. 

It's just so great the help I get from here compared to family and even doctors here. Refer me here, then there, then wait weeks for specialist.

The funniest thing is the wife and her family suggesting I take 2 excedrine and 2 ibuprofen, it was hard not to laugh at that as I had already taken a bottle of each the first week before I figured out it was CH. I don't even waste my time and body on that stuff anymore 

[FunTimes]

We have all been there, your family will offer up advice only because they do not understand and only want to help. I got the same thing at first. Now they just kind of let me go do my oxygen and wish me luck. 

Do you have a oxygen setup? if not that would be the first thing I would look into getting. I also use the 5hr drinks to try and hold off the pain and they sometimes can kill a headache all together f I catch it fast enough but that has only happened a few times. The oxygen is the best abortive I have and can clear out my head in 5 minutes on a good day. 

Not any one thing works 100% of the time but having a few tricks in your bag can make life a little better. 5hr drinks, oxygen, D3, ice packs and the list goes on.. mix them all up and find a combo that works best for you. Just as you figure it all out everything will change on you, That is the fun of it all.

Make sure you read up as much as you can here and ask questions

Good luck! 

[3800sc]

It's a tremendous boost just knowing I'm not alone here and on top of that I get all this priceless help. Thank you from the bottom of my heart. 

I have been looking into oxygen, knowing I probably will never get a prescription for it, I have been looking for bottles on my own, actually found some on Craigslist, 4 bottles for $100,sweet deal, they are just 50 miles away and may not have a chance to pick them up until I get caught up on some work first. But that will give me time to order the non-rebreather I saw recommend here, which I didn't bookmark so I will have to find the Amazon link again. 

As your name states, let the fun times begin!

[CHfather]

1 hour ago, 3800sc said:

I have been looking into oxygen, knowing I probably will never get a prescription for it, I have been looking for bottles on my own, actually found some on Craigslist, 4 bottles for $100

Good for you for working on this, but I suspect this particular thing that you have posted won't work. Any chance you can post a link to the ad?

I could be wrong about all this, and someone more knowledgeable will correct me.

If they're medical bottles/cylinders, you still can't get them filled without a prescription.  If they're welding ones, you might or might not be able to get them filled, depending on the policies of your local welding O2 supplier(s). They might be SCUBA "oxygen" tanks, which I'm pretty certain won't work at all, for a variety of reasons.  I can only guess that they're empty and quite small, at that price.

You'll need both a regulator and a mask.  The best mask is here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit    A standard non-rebreather mask, which will be around $5 at amazon, will work, but not as well.  When you get to buying a regulator, we can recommend some.

[3800sc]

Wow, thank you CHfather. You just saved me $100 because they look like medical bottles. 

https://omaha.craigslist.org/for/d/4-oxygen-bottles-with-holder/6681212151.html

I never even considered that I would need a script to get oxygen to fill these, I think these headaches clouded my thinking, haha. Looks like I just need to buy a big welding tank. 

Great looking out for me, awesome 

I am actually in the automotive industry and have bought oxy/acetylene tanks in the past and have them filled at the local LinWeld without problems, so Im just going to go that route. 

Thank you for the links! Absolute life/wallet saver! 

[ThatHurtsMyHead]

3800sc,

Yep, those are medical "E" tanks.  Looks like three of them have the seals and should be full if they are.  You could use the 3, but sadly you'd need a prescription to get them filled. 

Also it's very likely those are owned by a medical supply company.  Most E tanks are only loaned out for use and could possibly be confiscated if you tried to get them filled by a medical supply company.  (not positive, but I'd say pretty likely).  (I had a med company tell me they'd confiscate two I had from another company if I tried to get them filled).

I just did some quick research on an oxygen supplier (airgas).  Looks like there's some pretty good O2 prices.  $37 to fill a 200 cubic foot tank (which is really BIG).  They don't show the cylinder purchase price on their website, but the last time I bought one about that size it was about $175.  

Cheers,

J

 

Ah, I see you just posted a response to CHF.    I'll go ahead and post my response, but it's a bit out of date now. 

J

[3800sc]

Ah, bummer! I may as well buy a industrial tank then huh, would be cheaper in the long (short) run. I had decent sized bottles on my MIG and for my torch and last time I had them filled was only like 11 bucks for the O2, and a medium size tank will be easier to lug around. $175 seems like a great deal for that size. I see a few on Craigslist and they are about. The same price for smaller tanks, but most guys aren't separating them from the acetylene tanks. 

You rock man, thanks for the quick research! 

[CHfather]

We've had some discussions here in the past few days about what size industrial O2 tanks to get.  You'll probably want at least two -- the largest one you can handle for home use, and a smaller one, maybe 60 cu ft or even 40 cu ft, for portability.  spiny recommends 90 cu ft for the home one and 60 for the portable one, and Dallas Denny has had his home tank much bigger than that.  As I say, the bigger you can handle the better, since it'll keep you from having to lug it back to get it refilled. Same is true for the portable one, but in a lower range.  Ideally, you'd want a regulator and a mask for each.  You can roughly figure out how long a tank will last by converting cu ft to liters and dividing by a number, which I'll call 20 here, which would be the flow rate you'd be using (of course, industrial O2 regulators don't have flow rate settings as medical regulators do, so you'd just be guessing, but an effective flow rate (the rate that makes sure the bag is full each time you're ready to inhale) is typically between 15 and 25.  YMMV, of course.)  So, a 60 cu ft tank is about 1700 liters (you can get this info by typing into google [60 cu ft = liters]). Divided by 20 liters per minute, that means you'd get roughly 85 minutes of use from it.  (I will note here again that I and some others have observed that O2 treatment for CH seems to become less effective as the tank pressure (the amount left in the tank) goes down; but I'm not sure that everyone would agree with that. The last third of the tank is almost useless for my daughter (she's the one who has CH).)

Note also that standard industrial regulators do not have the barbed fitting that a mask is most easily attached to.  You can kluge that, or you can buy a plastic adapter for a few bucks at many hardware stores or online, or you look for a regulator that comes with an adapter with the barbed fitting.  A regulator you buy at an industrial supply store will probably be considerably more expensive than one you buy online, and it might not have that barbed thingie.