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ClusterBusters

signals61

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  1. signals61

    New to the group - some observations

    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: 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. 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. 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.
  2. 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.
  3. signals61

    Question regarding flying during a cycle...

    Just replied to the other thread about flying - I fly every week for work. No choice in the matter if I want my bills paid. I've not been able to attribute a CH to the flight or the pressure/altitude change itself. If I'm off cycle, nothing happens. If I'm in a cycle, something else will trigger the CH. Most of my flights are non-eventful. That said, if I do get a CH while airborne, they are particularly severe. Sitting in a confined noisy space just makes everything suck more. I always travel with my sumatriptan injectors, and am not shy about injecting right there in my seat. Arranging oxygen at my destination is problematic. First off, I don't regularly use it, even at home. I've had problems getting it prescribed and maybe I'll look into welding supply - learned that one here. But getting it set up at the far end for flights just won't work for me, since I cover 18 states in my territory and I can't predict where I'm going to be from one week to the next. Just can't manage the logistics. Triptan injectors are my only saving grace - but to be clear, it's not the flight itself that's a problem, its being away from home in a new or confined space with few options and increased stress levels. Hope this helps. Your mileage may vary.
  4. Hi "ThatHurtsMyHead"
    I'm new here, been a CH sufferer since 1983, only properly diagnosed about 4 years ago. Yes really. 30 years.

    Anyway, the reason I'm writing on your feed - I was reading in another post that you were in the military and were misdiagnosed. As was I. I was a communications specialist in the Army (Microwave communications - often speculated about cause and effect, but that's another story).

    I had my first attack in the military. It was without a doubt the worst attack I've ever had, so much so the barracks CQ had me sent to the base hospital. There, they didn't seem to know what to do, so they gave me an injection of Demerol, and sent me on my way. It worked, but then you could've hacked my arm off with a grapefruit spoon at that point, and I wouldn't have felt it. 

    No doctor ever got past the the basics. Hell, I didn't even start putting the symptoms together for a few years. There wasn't an internet then, so not a lot of information available to the average lay person. 

    My question to you - did you ever get a disability rating from the VA? All these years later, I'm being told by several friends I should go file. But other than the possible existence of admission records from the base hospital, I have no real record of this being a problem while I was in. Due to a death in the family while I was out-processing, my paperwork was rushed, and I kind of got screwed on a lot of stuff. 

    I'd appreciate any help or advice you can offer. 

    P.S. - I'm now maintaining well with Sumatriptan auto injectors. My corporate insurance plan only deems it necessary to give me a dozen every 3 months, so I make sure to get the refills even when I'm off cycle, so I can stock up. I'll be looking into "busting" after doing a LOT more research. 

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