New to the group - some observations

[signals61]

Hello all, 

Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest.

I found this group a couple weeks ago and have been digesting information since then. I can't tell you how relieving it is to know that I'm not making this stuff up in my head, that it's not just a headache, get over it. 

I'm episodic and I've been suffering from this since around 1980, got the first attack when I was in the Army at the age of 19 or 20. I'm 58 now. I still remember that first attack because it was without a doubt, the worst one ever. I really thought I was gonna die, and so did my buddies in the barracks. They took me to the hospital, where I was given Demerol. Nice, immediately took away the pain, but as you all know, did nothing for the next time. Of course, the Army being what it is, they said to Take Motrin and hydrate. For those not familiar with Army docs, this also happens to be the script for sucking chest wounds on the battlefield, or any other medical issue. (Army joke - see attachment) I've taken so much Motrin over the years, I'm amazed my liver has any function at all. 
(If any of you were also military, I'm looking for help with the VA to get some disability rating for this - I've heard it can be done, but not hopeful since I've been out so long) 
I worked in the communications field (still do), working with Microwave and Satellite communications systems. I've often wondered if those high frequencies at high power had anything to do with causing this condition, but my Neurologist thinks not. Still, I dont think he understood the the power levels we're talking about here. This isn't a microwave oven or a cell phone power level. This was powerful enough to send a signal around the world by bouncing it off the troposphere, or out into space. Maybe I'm wrong, but it always felt like it was worth looking into.  

It took me a while to realize that there are triggers. From what I've been reading, my triggers are relatively few. Alcohol and sleep. Sometimes, I would try to get drunk faster than the attack could take over. That never really worked and made for a really crappy night out. So now, once I realize I'm in a cycle, I just stop drinking for a couple months. Sucks, cause I really like a good beer or a good bourbon. I have found that if I get drunk enough, I can get a full night's sleep, but the next day really sucks. 

I fly for work regularly, almost every week. The only time I have an attack in the air is if I'm stupid enough to have a drink before or during the flight. So airline travel itself isn't really a thing for me. Likewise, trips to the dentist don't bother me. I have had extensive work done, full implants, with only 8 of my natural teeth remaining. So I'm no stranger to the dentist's chair. I get the nitrous every time, even for cleanings, and it's never been a trigger. (Funny side note - when the attack is in full swing, I get pain in the teeth that don't exist - go figure) 
I also saw where epinephrine is a trigger to some, definitely not me. I once had an allergic reaction to Aleve,  so bad my airway closed off. Epinephrine saved my life, with no trigger effect at all.
I smoke, sometimes heavily, but this seems to help more than hurt with the attacks. 

I wasn't officially diagnosed until about 3 years ago. After seeing many a GP over the years and being told it's probably high blood pressure or stress or migraines, I finally insisted on seeing a Neurologist. He asked me some questions and then, without missing a beat said I have every classic symptom of Cluster Headaches. Hallelujah! It has a NAME!!
He told me to throw away the Sumatriptan pills my GP gave me, prescribed Verapamil and Sumatriptan Injectors. We talked a little about other options, but he left me with the impression there really aren't any. I've since stopped taking the Verapamil, I'm already on Atenalol for BP, and the Verapamil didn't really prevent anything, so why bother. 

I guess I may have had a remission for a year here or there along the way, but it's been fairly consistent when the cycle arrives. Always the Spring/Summer change, sometimes Fall/Winter (in the middle of a cycle right now as I write this) I've learned over the years how to cope with the intense pain without the screaming fits I had in the beginning. I thought that meant maybe the pain was reducing, but my wife thinks I'm just used to it. She describes it as low groaning. She can predict an attack before me, just by observing my eye and stance when walking around the house. Apparently i change how I walk when an attack is imminent.

I've started the D3 regimen yesterday. Sticking to it may be a challenge, simply because carrying all those pills on a plane could be problematic going through TSA. We'll see on my next trip. Likewise, my travel schedule is one of the reasons I've never invested in Oxygen tanks. Logistically difficult to carry when traveling. I never leave the house without my Sumatriptan injectors and TSA doesn't seem to mind that I have half a dozen of them in my computer bag. They have been a godsend. I've read with fascination about those who say its made the cycle worse, but so far, that's not been my experience. I'm looking forward to positive results from the D3. 

I've tried marijuana in the past. It's really not my cup of tea to begin with. It didn't do anything for the pain, and I didnt like the combination of being high and being in pain, so take that one off the list.
A friend of mine owns a CBD shop, and he keeps telling me of those benefits, but I haven't tried that one yet.
I've been reading a lot of the Busting stories and information. I'm not sure how comfortable I am with it, primarily how I'd source it or grow it reliably. I did try something like this many years ago recreationally, so I have no moral objection to it, I just have to admit I'm a little scared of the possibility of getting something other than what I intended. The information about ingesting poison mushrooms are enough to make me want to take roundup to my yard right now, and just scorch the earth. If I'm confident with the source, I may give it a try, but will probably have other questions first.
I'm going to call my GP today and see if I can get a script for O2 for those times when I'm home, but last time I tried that I stormed out of the O2 supplier's office in complete frustration. 

A couple of my favorite coping mechanisms: 
Showers - it doesn't matter if it's hot or cold. If it's hot outside, a cold shower feels great, and vice versa. Just get in the shower and soak as the attack wears on. I usually do this for the middle of the night attacks, so I can fall asleep right after. 
Ice Pack - I have a gel pack in the freezer. It's about 6 inches long, 3 inches wide and has an elastic strap on it that allows me to wear it like a headband. I just strap this on the right side of my head, from the eye socket back to the temple. It really makes the intensity of the attack easier to tolerate. 

I try not to take Sumatriptan too much - for example, I'm at the peak of my cycle right now, meaning 4-5 attacks a day/night with shadows in between. I have a feeling the sumatriptan causes some heart issues, as I feel increased chest pressure and slightly labored breathing immediately after injection, so taking one every 4 hours seems dangerous to me. I try to limit it to just that first attack of the night so I can get some sleep, but sometimes I feel like I have no choice but to do two or three a day.
Also, I have to ration it. My insurance company says I should only need 18 injectors for a 90 day period. So that's their extensive medical opinion anyway. I've tried explaining to the emotionless human robot on the phone how long a cycle lasts and how many attacks I get, doing the simple math for them, all to no avail. So now I have a reminder set on my calendar, to go back and get refills even when I don't need them. Idiots. 

So if you're still following along after that long introduction/rant, congratulations and thanks for reading. I welcome any support or advice, and look forward to sharing my experiences with you all. Again, it's just comforting to know there are others out there who understand exactly what I've been going through all these years. Thanks for that. 

 

[jon019]

Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest.

Hiya Signal...glad ya found us!...post away, sometimes just saying this stuff is better than any med...and we REALLY get it...

.....I worked in the communications field (still do), working with Microwave and Satellite communications systems. I've often wondered if those high frequencies at high power had anything to do with causing this condition......Maybe I'm wrong, but it always felt like it was worth looking into.  

...I think it's a valid concern....and not just for CH....we are all exposed to all kinds (and ever increasing) forms of electronic "waves"... and someday they may look back on us with derision and amusement at our cavalier ignorance...like we do for the Roman's drinking out of lead wine glasses. Worked for a company that used a 50k watt microwave to thaw fish blocks for processing...BEAUTIFUL stainless machine...30' long and very efficient. The company rep used to regale us with stories of microwave history....like that the favored watch duty onboard navy ships was next to the new gizmo (microwave) because "it's warmer!"...can you say cooked liver?

He told me to throw away the Sumatriptan pills my GP gave me, prescribed Verapamil and Sumatriptan Injectors. We talked a little about other options, but he left me with the impression there really aren't any. I've since stopped taking the Verapamil, I'm already on Atenalol for BP, and the Verapamil didn't really prevent anything, so why bother. 

...some folks can use the pills as a prevent if they know their cycle well and get the timing figured out....but they indeed be worthless to most as an abortive. A standard treatment would be a prednisone (or methylprednisolone IV) and/or pill taper to break a cycle  while ramping up verapamil dosage (10-14 days). Sweet spot reported to be 480 mg/dy of immediate release type (lesser, but not zero, reported success with sustained release). Some go much higher...I was over 1000 mg/dy in high cycle. Heart issue side effects potential MUST be monitored. Know not the ramifications of mixing atenolol (Tenormin) and verap.  One of the first meds I was ever prescribed for CH was atenolol...didn't do squat. Don't waste your time on Inderal (propranolol)..some success with migraine but not CH....

...many find that the 6 mg suma injections are too big a hammer and 'hack" the injectors to get 2-3 mg injects instead... which works just fine with fewer side effects and a lesser chance of rebounds. vials of the drug are sometimes available (ask your pharmacist) where you can use exactly the amount that works (using insulin needles)...

...my abort of last resort is Zomig nasal spray (5 mg)....for me no side effects, no rebounds, and an 18 hr hit free window....added bonus of insurance would approve suma and Zomig scripts at same time (tho not enough of either)....caution to NEVER mix triptans within less than 24 hrs....

 I've learned over the years how to cope with the intense pain without the screaming fits I had in the beginning. I thought that meant maybe the pain was reducing, but my wife thinks I'm just used to it. She describes it as low groaning. She can predict an attack before me, just by observing my eye and stance when walking around the house. Apparently i change how I walk when an attack is imminent.

...same hard earned aha moment for me....when I stopped screaming, cursing, thrashing, hitting myself and anything close, and working myself into a frenzy I was able to cope much better. pain was the same...my reaction to it made a HUGE difference...adrenaline at the WRONG time is not your friend.....

I've started the D3 regimen yesterday. Sticking to it may be a challenge, simply because carrying all those pills on a plane could be problematic going through TSA. We'll see on my next trip. Likewise, my travel schedule is one of the reasons I've never invested in Oxygen tanks. Logistically difficult to carry when traveling. I never leave the house without my Sumatriptan injectors and TSA doesn't seem to mind that I have half a dozen of them in my computer bag. They have been a godsend. I've read with fascination about those who say its made the cycle worse, but so far, that's not been my experience. I'm looking forward to positive results from the D3. 

do whatever you need to do to try the D3 regimen...it may make everything else unnecessary! haven't heard of TSA concern with the necessary pills...but I used to carry all my scripts.... and photo copy of the vitamin bottles with pills shown would be a good idea....

I'm going to call my GP today and see if I can get a script for O2 for those times when I'm home, but last time I tried that I stormed out of the O2 supplier's office in complete frustration. 

well...your doc sounds like he/she knows what they are doing so I am surprised they didn't INSIST on OXYGEN....tis the accepted standard of care first line abortive. O2 has saved many a clusterheads sanity, maybe life. not sure what you experienced at the O2 shop... but you do need a script...and if your insurance doesn't cover...you can offer to self pay. if that doesn't work welding oxygen (same as medical) is your next option...

....I used to travel in cycle...using Lincare travel service I was able to arrange for oxygen tanks at my hotel...same service, same price. you probably already know that the airlines won't allow you to board O2 tanks....

I try not to take Sumatriptan too much - for example, I'm at the peak of my cycle right now, meaning 4-5 attacks a day/night with shadows in between. I have a feeling the sumatriptan causes some heart issues, as I feel increased chest pressure and slightly labored breathing immediately after injection, so taking one every 4 hours seems dangerous to me. I try to limit it to just that first attack of the night so I can get some sleep, but sometimes I feel like I have no choice but to do two or three a day.

...see previous comments re hacks and vials (i could get 15 injects out of the 5 vials)...it IS a powerful med not to be trifled with...especially as you age....

Also, I have to ration it. My insurance company says I should only need 18 injectors for a 90 day period. So that's their extensive medical opinion anyway. I've tried explaining to the emotionless human robot on the phone how long a cycle lasts and how many attacks I get, doing the simple math for them, all to no avail.

...if your doc has an advocates heart (and a healthy disdain for insurance droids) have them write a 'letter of medical necessity" describing your "intractable' cluster headaches and the need for "X" number of vials/dose packs....denying you the scripts your doctor has prescribed without seeing and evaluating you is called practicing without a license....most docs I know are a little more than touchy about being questioned on diagnosis or treatment...

So now I have a reminder set on my calendar, to go back and get refills even when I don't need them. Idiots. 

Stockpiling!!!.....

best

jonathan

Edited October 29, 2019 by jon019

[xxx]

Hey Signals,

Welcome to Clusterbusters.  We know what you've been going through so you've come to the right place.  Regarding travel and taking the vitamin D3 regimen, I pack a ziplock bag with enough vitamin D3 and cofactors to last the duration of my travels plus enough for a few more days in case of delays and keep it in my carry on bag.  In the 8 + years since I developed this regimen, I've never had any problems with TSA or customs during international travel.

I switched to the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 capsules.  They make the loading schedule a snap at one capsule a day. I've been taking one D3-50 a week as my maintenance dose and this has been adequate to kept me CH pain free.  At one D3-50 a week the daily cost is ~3 cents/day where the oil-based liquid softgels cost 6 cents per 5000 IU or 12 cents/day.

Check your PM InBox, I've sent some additional info.

Take care and please keep us posted.

V/R, Batch

[CHfather]

signals', you got most everything covered here by two great members. Here's a thread for the advice abut getting two or three jabs from each 6mg Imitrex autoinjector:  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

I don't think there's much in here you won't know, but just in case . . . . https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

In case you decide to go the welding O2 route, we've got you covered: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Keep in mind that for busting, you can legally and reliably buy and possess a very effective agent, rivea corymbosa (RC) seeds, which cause no trip effects in most people and are as effective as the more hallucinogenic substances. It is unlawful to prepare and drink seeds.

[signals61]

Thanks so much for the kind support. 

Regarding travel with all the vitamins, I'm going to take Jonathan's advice here and get photocopies of the pill bottles, then put everything in ziplocks. I agree that TSA shouldn't care, but every once in a while you get someone on a power trip. Last week, in Minneapolis, they did a full scan on my luggage because my deodorant was right at the 3.2 oz size limit. Of course they do that only when you have a tight connection...

 

Jonathan: 

5 hours ago, jon019 said:

the favored watch duty onboard navy ships was next to the new gizmo (microwave) because "it's warmer!"

Dude, I can tell you stories. Everyone wanted to buddy up to the commo guy. I was in tactical outfits (101st Airborne, 2nd Infantry Division and the like), meaning out in grunt land. My rig was like the Taj for most of the infantry guys. Warm in the winter, cold in the summer, sheltered from the rain, snow and sandstorms. Its well known that the Army takes better care of its equipment than its soldiers, and that commo gear had to be maintained at just the right temperature. So, bonus, air conditioning in the desert! Toasty warm on a mountaintop on the DMZ in Korea. The microwave gear was warm mostly because amplifying that much power just generates heat as a natural by-product. On the other hand, you definitely didn't want to be in front of the big dish feed horn. The fresh crop of dead birds could attest to that. 

6 hours ago, jon019 said:

...if your doc has an advocates heart (and a healthy disdain for insurance droids)

I think I would classify my GP as passive aggressive, and not very aggressive. When I told him about my challenges, he liked the idea I had about stockpiling. He's a GP, and easier for me to get an appointment with than the Neuro. He's really learning about this as I do. He won't go too far out of his lane, but he'll give me just the amount of support I need, nothing more.  

 

6 hours ago, jon019 said:

not sure what you experienced at the O2 shop

Well, in truth I was in cycle, and peak attack when I went to the O2 shop with my prescription from my Neuro. They started giving me a bunch of crap about Medicare (I don't have Medicare, I have private insurance through my employer). They wouldn't even look up my insurance. Then they looked at me like I belonged in a homeless shelter and said I probably couldn't afford to pay for it out of pocket. Now mind you, when I'm not traveling, selling multi-million dollar communications software, I do dress pretty casually. But I thought it was presumptive of the lady, so I gave her a few choice words that would make a guy with tourettes blush,  and left, not to return. 
I figure I'll try again with my GP - get a script from him, go to a different shop. If that still fails, I'll definitely go the welding shop route. At least at a welding shop, the guys are used to a few expletives...

I still doubt I'll travel with it. My itinerary is just too complicated and subject to change at the drop of a hat. Oddly enough, I seem to have fewer attacks on the road, in cycle. I haven't been able to figure that one out just yet, but the frequency of attacks is definitely reduced. 

Thanks again to all of you. 

 

[jon019]

56 minutes ago, signals61 said:

....and get photocopies of the pill bottles, then put everything in ziplocks. Last week, in Minneapolis, they did a full scan on my luggage because my deodorant was right at the 3.2 oz size limit. Of course they do that only when you have a tight connection...

...yup..be prepared...I got yanked once for having a can of salmon in my bag......let me go when I offered to eat it...maybe you could pop a few D3 for 'em...

 

58 minutes ago, signals61 said:

7 hours ago, jon019 said:

...if your doc has an advocates heart (and a healthy disdain for insurance droids)

I think I would classify my GP as passive aggressive, and not very aggressive. When I told him about my challenges, he liked the idea I had about stockpiling. He's a GP, and easier for me to get an appointment with than the Neuro. He's really learning about this as I do. He won't go too far out of his lane, but he'll give me just the amount of support I need, nothing more.  

yeah...I was thinking of the neuro...if they have CH experience they will know this shit...got one of mine on board and pissed....she wrote a flaming letter I'd dearly love to have now...got me 18 doses of Zomig/mo !! (didn't even need or want that many, alas short lived when ins. changed). her partner (my main) on the first visit looked me in the eye, put her hand on my arm and cooed "now then my dear, you WILL want to STOCKPILE in between cycles"...I was flabbergasted (cuz that's survival mode for cluster heads.... and she got it !)....

27 minutes ago, signals61 said:

 

I still doubt I'll travel with it. My itinerary is just too complicated and subject to change at the drop of a hat. Oddly enough, I seem to have fewer attacks on the road, in cycle. I haven't been able to figure that one out just yet, but the frequency of attacks is definitely reduced. 

...it's called STRESS...for some a real a prevent, for others a trigger....Bob G tag line on another board: "stay stressed. never relax. never sleep. ever" I would add: say goodbye to beer....sheesh, the pain of CH is just ONE part of this nightmare...

 

BTW...thank you for your service!

[FunTimes]

Signals

I pay for my 02 out of pocket, it was cheaper for me in the long run. My insurance company has a set price on how much a tank is but when I asked about paying for it on my own the price dropped about $250 bucks. I have a company that I found just outside of Philadelphia that I get tanks dropped off at my house  the day after I call in my order. They started me off with 2 M60 and i think 4 E tanks, due to the lack of record keeping and the delivery driver being understanding/not caring I have a good stock pile of tanks now. Be ready for a fight, it took me more then a few months of yelling at and arguing with different 02 shops and vendors to get what I have now. 

As far as busing goes you can become a farmer and grow your own at home. This is not the portion of the board to talk about it but read up and sk questions and you will have a tun of help and support here.