Yeah, sadly, we understand. First off:

Go to the medications section, read the post "123 pf days and I think I know why" Simple, over the counter supplement program that's providing a LOT of relief to a lot of people, pennies a day and it's good for you even without CH

Read this link and get some oxygen, whether medical or welding grade, both are fine, welding is cheaper. My aborts run 6-8 minutes just huffing 02, has all but eliminated my use of imitrex.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Have you tried the energy drinks in the past? Monster, Rock Star? If I toss one of those down in an emergency it'll ramp my attacks down a bit, for some it will even abort an attack. I'll toss an Excederin Migrain down with a red bull for nasty shadows. But don't make that a habit or the rebound attacks will get ya.

Sorry the bastard is back, it sucks after a long remission period.

Joe

Ok.. a couple of thoughts..

A) Wow. Way to go topamax. That first post of mine was barely coherent. I just want to point out that I'm a published author with a post-secondary education - in case anyone ever wants to debate/reference the side effects of the drug.

B) Oxygen. Maybe it's the topamax, but I remember not comprehending the process last time either - how does one go about getting the whole oxygen thing? I did get a prescription at one point last time but then the whole cost of getting it setup just became prohibitive. The way i understand it seems to be that it's a front-loaded cost to buy all the equipment if you dont have insurance to cover it.

C) Vitamin D. I worry this is like the whole melatonin thing from the last go-round, where everyone swore melatonin was the miracle cure. There doesn't seem to be to any -current- info now about melatonin though suggesting it was flavor of the week, ya know?

Cost for 02 is much cheaper then most other abortives. I live just down the road from you in San Diego. I was a Kaiser Patient for many years and paid out of pocket for my oxygen. An E Tank rents for about $4-$5 a month, and refills are about $12-$15. I get about 6 aborts per tank. The only other equipment you need is a regulator that meters the 02 flow, I grab them off of E-Bay for about $20, and a Non Re Breather Mask, another $20.

Joe

What Joe said.

Vit D is a little better than the flavor of the week.  Of course, it doesn't work for everyone, but then Dopeymax doesn't work for me either.  I can't say the Vit D regimen has stopped mine yet, but there is marked improvement, and I'll take that everyday and twice on Sunday.

BTW, glad you're back, just hate why.  Here's hoping we can get rid of you again soon.   

Jerry

Holy crap - things got worse fast.

Today I got hit 3 times. 4am, 4pm, and then again at 7pm. Two minors, one major. I'm getting these HAs that are different in a way.. my eyes water a whole lot.

Essentially I went like 36 hours without a HA then 3am wednesday that was awful and i thought was going to kill me and took 1 and 1/3 shots and was some of the worst pain I've had in recent memory. I started with my usual 1/3 and then went to worked up to another full.

Then 8:30pm wed 1/3 shot, then 4am thu 1/3, and 4pm thu 1/2 and 7pm 1/2 (moreso because i screwed up with the plunger than anything).

I was down to 1 a day before.. with it dropping to a max of 36 hours between. 2 a day was a "worst of it" with an occasional 3 a day for me every so often. I'm worried about tomorrow. I know i've had 3 a day before.. and within a few hours isn't unheard of but i'm worried.

Bleh.

I think the prednisone had mellowed things and i had been lulled into a false sense of security while the topamax is still getting into my blood stream. I think tomorrow bright and early i'm going back to a different doctor in the area i've been to for a sinus infection and i like more and asking for a longer dose of prednisone.

I've been told with topamax it's 4 weeks and just sort of have to wait. I had an "experience" yesterday with it where while not quite hallucinating, you sort of "see things" that you conciously know aren't there. i think it's called palinopasia or whatever. I had it before the last major time i dealt with this.. and compared to being in horrible horrible pain.. i'd rather see swirly colors and be mildly high.

Loric, you've got to investigate getting the O2: high flow regulator (at least 25lpm) and a good nonrebreather. It's the best abortive around, especially coupled with an energy drink. It won't change your cycle but it will give you that extra you need to feel more in control. That thing with your family? Mine didn't understand until I started letting them see an attack. Hid if for years from everyone, and mostly still do, but after viewing a hit, they got an idea it was something a bit more than hiccups. Or a migraine. I think the dramatic change between full on hit and full on release got to them more than anything else. Do not pass go, do not collect $200, and go straight to wherever to get the O2. OK? Blessings. lance

I wondered about the sinus infection being the trigger too - but I followed my meds proper-like and don't have any symptoms I'm aware of.

But with how often i'm getting hammered lately i can't really tell anymore either. Muscles in my neck and shoulders are too sore to tell and my eyes and nose are all water/congested from the attacks.

So..

I went back and I hashed everything out and I had a pretty decent week since then.

I managed to make it from last-last Saturday through this friday with nothing but PFD's! Woo-hoo!

Dr checked me all over for any sign of a lingering sinus infection and there didn't appear to be any visible signs. He had me go over every medication I had ever been on ever for my CH's and why i stopped taking whatever and why I wanted the prednisone, etc.. and what my plan of attack was.

Ended up with a plan to up my dosage on topamax to 100mg twice a day (i'm not sure if my remarkable tolerance for this drug is a good or a bad thing at this point) and to Prednisone in 20mg tabs 3x a day for 3 days, then 2x a day for 3 days, and then 1x a day for 3 days and then .5 for 3 days.. with the options to stay at a level and talk to him if an issue arises.


I sorta almost immediately messed that up.. The prednisone along with the extra topamax made me super sleepy so.. I took my topamax and prednisone with meals.. so if i was awake.. it'd be breakfast lunch and dinner.. but if i passed out i'd miss the lunch dose.. and i kind of for some reason thought "oh, i missed some doses, those are important so i'll backtrack the taper a little since i have extra.."

Day 1: 3x
Day 2: 2x
Day 3: 2x
Day 4: 3x
Day 5: 3x
Day 6: 2x

Day 7: .5 Prednisone along with full topamax dose in the morning since it was going to just be one pill for the whole day. This seemed logical. It didn't occur to me that since I had moved my days around a bit I had really just halved-halved-halved pretty dramatically.

Cue 3pm. Normal before I get a full CH I get what one might call a bit of a "normal" headache that rapidly escalates. This gives me time to takes meds, prep my statdose hack, etc.. It takes just a few mins, and i can tell if it's a CH or just a "headache" of some other form.

I was walking down the hallway and I suddenly felt like "something went terribly wrong" for lack of a better way to describe the sensation. There wasn't like a a build up of pain, just sudden intense pain that took me by surprise and it was to the point of being near blinding and nauseating. I actually like gagged/coughed and was whoozy right then and there and had to brace myself on the wall.

In panic mode I had to go find a statdose pack and struggled to get the stupid thing open. Hands shaking, vision going all kinds of blurry. Awful awful awful. Almost had that moment where I really thought I wasn't going to be able to get it open because it just wasn't working and i couldn't get myself to focus.

Thank god it worked. I managed to pull myself together enough to hack it instead of doing a full inject (i like to avoid as many rebound as possible, thank you) but used roughly a half instead of a third since i was in no position to be scraping off a label or really measuring.

After I could tell which end was up again, I took the other half of my morning prednisone and then with dinner took a full pill and of course the usual topamax, essentially putting me back at 2x a day.

I've got enough pills to sort of stay there at 2x (40mg a day) for a bit.

Day 8: 2x for the pills, overall a PFD

Day 9: Woke up at 1am with a nagging milder "headache" - gave it some time, noticed it was getting worse. If anything, this one seems to be the rebound from the other day possibly. It did escalate though, nipped it in the bud early though with the bit left from the other imitrex abort. Got lucky that those two ratios at least worked out.

So.. yeah, that's where I stand. I'm hoping the 40mg a day with the prednisone is actually enough to keep things at bay and I don't have to go back up to 60mgs or higher.

I'm also supposed to be getting off it entirely in theory in the few days, so i'm going to have to call and talk to the Doc and see what he says after how this week has gone. *sigh*

I did discuss oxygen yet again with my doc, but it goes back to my lack of insurance - he said without it it's pretty much impossible to get filled/delivered etc.. without costing an arm and a leg.

He didn't go into specifics, but at the time he felt the current course of action was certainly a better option.

And I know we talk about welder's supplies - but I still have yet to figure out exactly what I'm supposed to buy for that or where to even buy it. I haven't even been able to find a ball park for it since it just doesn't seem to be something someone outside the industry would buy on their own, ya know?

Their whole group seems to frown on welding as a hobby pursuit too. So many barriers, it's really kind of obnoxious.

So, if i could get some real numbers for pricing and how much a whole rig and "per abort" it would all cost I could make a more informed decision. Like you said, it's 70% whereas with imitrex i'm like at something more north of 90% for myself with only the really rare beast slipping past - and those same ones probably wouldnt have been helped by oxygen, God, or the hands of fate either.

Well, checking in once more..

I do have to call the doc. Either have to step down the prednisone or run out in the next few days so some sort of solution needs to be figured out. Bleh. I just want to be ok.

My sinuses have been driving me nuts the last few days. My mother and sister have lot of the same allergy issues i have too - like same inability to cope with perfumes and plants, etc.. and they have been struggling the last few days so i think that's the cause.

Anywho, despite allegra i've been a faucet with occasional relief. All runny clear though. Did some neti pot and that seemed to help. Also used some sino-fresh, which is really just mint saline water. Avoided the chemical stuff cuz i dont want rebound congestion.

This morning i've had a nagging headache. Not sure if it was pure sinus issues or more like underlying phantom demon stuff.

Well, nagging headache that wasn't escalating to the CH point, and knowing that i shouldn't take anything like ibuprofen and that the sinofresh and neti pot weren't clearing it up either.. i recalled the "energy drink" advice and being both.. well, ok, wreckless and not having worked out in a month and a half I went and got the supplements I used to take 2x a day while working out.

Here's the deal. In the last year - literally started May of 2011 - I've lost nearly 60lbs. Working out like 5x a week, started supplementing some, doing my P90x, etc.. being all kinds of fit. My pants fall off my butt. Got that stupid sinus infection back in late Feb, early March and then my CH cycle started and i've been down for the count.

While I was working out and being all fit I had been taking "Animal Cuts" pill packs twice a day which aside from various vitamin 'complexes' (yeah, i know, whatever0 they have a stimulant pill in them. Like i said, being wreckless and not having an energy drink I figured, why not?

It seems to have worked. I actually kind of feel normal. This stuff is how i always felt before when taking it before working out - kinda bouncy - but my obnoxious non-CH headache is gone.

Now i'm going to go see about doing some sort of milder workout because i miss being able to get a full night's sleep. Also, i've put back on 5lbs since start on the prednisone. One year of continuous weight loss and less than 2 weeks on the pred and i've put on 5lbs. Screw that.

After i workout i think i'll call the Doc's. I'm just, i dunno, have to be "in the mood" to deal with Doc's office crap at this point, ya know? Like need to have achieved a certain state of zen first.