Hi! (group says "Hi Loric!")

I'm backish, and I really feel bad after not really sticking around after going off my last cycle. I actually thought this crap was over, ya know? I went to Europe and didn't even pack my Imitrex. I lived in Paris for a month a study-abroad and didn't think about Topamax. Oh, those were the good old days.

Things came back with a vengeance about 2 weeks ago. I'm in grad school now, my professors think i'm dead or something - I haven't really gotten out of bed much in 14-something days. I did a quick trip to a local clinic since I moved out of my home state, don't have insurance, and haven't have a CH since like a year and a half ago - thank you Arabic walk-in clinic Dr's you have twice now been a god send to my CH woes when it it comes to get a Rx.

That said, I got my my Imitrex, yay - which is now generic, super YAY! It's now like $99 and the internet taught me how to mod-it to get 3 shots from one stat dose so woot-woot i'm no longer paying $300+ a day and wishing I was dead. $30 I can actually live with. The woman at the pharmacy was all like "Honey.. it's gonne be $500 for these 5 sets of shots.. are you sure?" and I was like?" "fork it over sister and order another round!"

Anywho, silliness aside, this hurts. And the topamax is not working, at least not how I remember it. I tier-ed up quick and I probably risked some serious gran-mal seizure in process but i did at least tier-up to my old dose of 100mg twice a day to nip this in the bud. Do i stick it out to the 27 day mark and keep-on keeping-on with the T-rex and maybe drop another $500 on injectables and hope it works or drop another $100 at clinic and god knows what at the pharmacy and give Verapamil another shot?

I seem to recall Verapamil working from my last go-round but my HMO doc not wanting to up my dosage for fear of heart failure because i got woozy everytime i sat up.

I also do poorly on a Pred dosage - as in i felt no pain for a few days but then was back worse then ever with my skin feeling like it was on fire and vomiting a lot.

I bring this all up today because i got 3 majors in a row today - all fended off with T-rex. All biggies that occured while i was asleep midday and subsequently caused me such exhaustion at the end of each event that i was awake briefly, conked out, then woke again a few hours later for the next go-round. Really not fun. Plus the muscular tenderness left over in the base of my neck and around my face suggests it put it up a valiant fight.

This is all crazy rambling, i'm sure. So i'll sum it up..

I've had mild pretty much chronic CH's since i was 15-16 until i was mid-20's. Then i had a meltdown around 25 when it got really bad and i couldn't function, went crazy looking for a medical solution, went on topamax and it eventually worked but did try a few other things along the way.. eventually came off Topamax while out of cycle (and who knew that was possible for me?)

Have been out of cycle for like a year and a half - no headaches at all.

Now they're back with events like the one that caused the major medical treatment last time, and dont seem to be responding well to the treatment, though they do seem to be have similarities - like I do recall some really bad days like this one when my treatment was ramping up the first time.

So.. what to do?

Hi Loric,

Sorry to hear the beast is back. 

IMO, you haven't been on the Topomax long enough to see the benefits yet.  That can take 2-4 weeks from what I understand.  Just stick with it.  If it's gonna work again this time you won't really know for another couple of weeks.  Don't get impatient.

You didn't mention Oxygen.  You've been here before.  You know it works for a lot of us.  It's cheaper than Imitrex and just about as effective.

Take a deep breath and stick to your guns.

-Dennis-

Bad time to bring this up....so I will! ;) You're a CH'er for life, it just is what it is. So NEVER get caught unprepared again, always assume your next cycle is just around the corner.

The imitrex is awesome for classroom, airplane, etc. But get oxygen!!!! It's much much cheaper then imitrex, and for me just as effective. The cute little E-tank, that's easily hidden in one of those soccer mom chair bags, will abort up to 6 attacks for me. Thats' $12.00 worth of oxygen, vs' 6 imitrex shots. PLEASE take a look at the oxygen info link, saved a lot of money and a lot of peoples sanity on this board.

And since you're a college kid anyways, doing all nighters studying!!!...look into energy drinks. Monster, Red Bull, Rock Star, any contining the combo of caffeine and taurine. Chug one of these at the first sign of an attack, may be able to abort some with those and conserve your trex shots.

Welcome back, sorry he's pounding on you now, don't let him beat ya! ;)

Joe

I'm with Dennis here.   Maybe you just need more time for the topomax to kick in.  I did not get immediate relief when i started it.  Prol took 2 weeks. 

Thanks for the replies so far.

I've had pretty much zero luck with energy drinks. I go from "ouch, that kind of hurts" to "AHH!!!" pretty darn fast.

It's weird, it seems on particularly bad days like yesterday that they reach a pain level that I previously thought unimaginable and get there so quickly that I'm fidgeting with the Trex while struggling to control any simple muscle movements. It's really not fun.

Am I also the only person who think Trex works really well but has this like 5-7 min period of like "escalation" where it feels like it actually makes things worse before all the sudden its all rainbows and unicorns?

Ok.. talk to me about Oxygen.  I've totally put it off because before oxygen bars were a fad and it sounded stupid and umm.. yeah.. that's about the extent of my logic and I mean really.. yup. Extreme pain that I can barely control with harsh chemicals that cost me an arm and a leg so.. I'm having a hard time believing it can be controlled with something in normal air.. that is a vital component of that air.. that my body needs anyways.. and I would die without.. it's not even as trivial or special as helium.. ya know?

Can I really get it cheap, fast, and prescription free? You mentioned some sort of chair? I'm confused already.. but do explain..

You can get O2 with a prescription, and if you have insurance it should pay for most or all of it. If you don't have insurance, you can go the welder's O2 route.

Click on and read the oxygen info link on the left. Here's a direct link to it:

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Ok, i read that page but i'm still confused...

As a poor college student that page essentially told me "go get a desk job with an HMO and come back when you do"

There didn't seem to be any practical advice at all on there for anyone who did not have access to any of the normal means for getting oxygen prescriptions, supplies, anything.. heck, how do you deal with headaches when you're not withing the requisite 100 yard radius of the massive tank?

Hi Loric,

Doesn't sound like you're having much fun. And unless you're a rich guy, those harsh, expensive chemicals you're ingesting will eventually cause harm to your delicate organism and put you in the poor house. Oxygen is sooo effective for sooo many people that you'd be foolish not to give it a try. You might also look into r.c. seeds. They're cheap, legal and they work. As a last resort, the cautious use of psychedelics appears to be the most powerfully effective weapon yet discovered in our fight against this life-stealing monster. Spend some time reading and asking questions on the sister forum to this one, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Click on the "New ClusterBuster Message Board" in the middle of the page, near the top where the "New" is spinning around, after reading as much as you will on that page.

It's a tough fight but it's definitely winnable. My son Michael has had an especially severe case since he was 12, becoming chronic about 4 years ago. Each sub-hallucinogenic dose has given him several days of complete relief. Each time the beast has returned with less energy. I have no doubt that within the next few months he will get his life back and have the beast under control. I wish you luck.

Ron

Loric wrote on Mar 5^th, 2010 at 2:24pm:

Ok, i read that page but i'm still confused... As a poor college student that page essentially told me "go get a desk job with an HMO and come back when you do" There didn't seem to be any practical advice at all on there for anyone who did not have access to any of the normal means for getting oxygen prescriptions, supplies, anything.. heck, how do you deal with headaches when you're not withing the requisite 100 yard radius of the massive tank?

Take a portable tank with you.

Everything you could ever want to know about oxygen treatment of cluster headache syndrome is in there. Either use it or don't.

I wasn't sure about it either untill I tried it. It was a very strange sensation - the headache went away as quickly as it built up, and as you know that just doesn't happen, so give it a try.

Not sure what you mean by "you're confused" 



Quote:

for anyone who did not have access to any of the normal means for getting oxygen prescriptions

Do you not have ANY access to a Doctor????   It doesn't have to be a Neurologist...any Dr. with an M.D. after their name can prescribe 02 for you.

Look into welders 02 as has been suggested.  NO Dr. required for that at all.  I have both.  Welders tank as well as  portable e-tanks.   Has made my life Soooooo much easier.  And cheaper.  And safer...and a lot less chemicals going into my body.

It will take some research and running around and making phone calls, but if what you want is relief, then it's there for you if you just make the effort. 

Hi Loric,

I think you should take a deep breath (literally) and assess where you are first before jumping to conclusions, for it sounds like you are a little confused at the moment.

First port of call: Oxygen, the abortive of choice for most of us. Not a flash oxygen bar on the lower east side but serious 02 at 10-15l flow rates. I wont bore with details in this post because there is probably 1,000 pages worth of info on the subject in this forum. Click on "oxygen info" on the left of this page to access the cheap and very effective world of oxygen.

You will need an additional arsenal of abortives, all of which include energy drinks (with combo of caffeine and taurine), triptanes, lidocaine and/or trial and error stuff that works for some and not for others.

It sounds to me that you also need to make sure whether you really are chronic or episodal, since you say that you have been painfree for 18 months before the cycle set back in, for this obviously has a bearing on the treatment.

Many of us prefer Verapamil over Topamax because of the side effects of Topamax (can make you feel dopey). Verapamil is generally better tolerated than the latter. Both take between 2-4 weeks to take full effect and both need to be tapered up (and down if you stop using either).

If you are episodal, you may want to discuss a prednisone (steroids) treatment with your doctor. A course of two weeks can often abate an episode until Verapamil or Topamax take effect. Steroids are pointless if you are chronic because their effectiveness wears off very quickly after tapering them off or if you have frequent episodes throughout the year, for steroids come laden with potential dangers. In measures, once a year or so and at your age they should be ok. In any case, you should discuss ANY medication with a doctor.

If you are chronic Verapamil, Topamax or a combination seems to be the preferred weapon.

I neither preventative nor oxygen works there are alternatives that have worked for many, including RC seeds and various others that you will find in these pages.

I hope this helps and that you will PF soon and for as long as possible.

Hi Loric.  I have had smashingly good success with the clusterbusters treatments as noted above.  I don't know about your college, but at mine (many years ago) I was the only person NOT on the psychedelics.  If I had experimented like all of my friends I wouldn't have spent so many classes sweating and holding my head in severe pain.  Kind of ironic.

There are lots of precautions with 'busting' but not near as many as the prescription med disclaimers.  If you are really getting your butt kicked, do some reading at the clusterbuster website.  Not for everyone, but I bet it is for more people than you would think.

Personally I aborted 2 cycles last year in the shadow period before they started and busted one full cycle within 3 weeks of not-much-pain because I was using the recommended techniques.  I write this not telling people what to do, but because we all know how much pain we deal with.  Loric, when you describe the costs or side effects or impacts on your life I can't help but make sure you know there are other options that people have been very successful with.  I have been pain free for weeks now, went out for beers last night and will dose again at the onset of my next shadow.

Good luck, keep reading!

--Shaggy

Where to start..

This is tough for me, and not just in the "ouch this hurts, poor poor me" sort of way, but because I'm normally a very well written and composed person. Normal world I'm a freelance writer to support myself.  My reading comprehension is crap right now and I'm sure most of what I'm trying to write isn't being understood.

I'm trying to understand, I'm just not getting it.

I think part of it is that people are envisioning me sitting in some lecture halls holding my head.. i dont remember the last time i actually had a class that involved sitting in a room listening to a professor. I work backstage in theater and production. That's a big reason i cant see oxygen as being practical. What am i supposed to do?  Wear it like a camelback as I climb up scaffolding to checking lighting fixtures? Drag it behind as I'm under the stage looking for a cross over in the audio system? Load it on the paint cart while i'm doing touch up?

As for being chronic or not.. i think my calculations/statements of were way off in the first place - maybe I made it about a year. It drives me nuts that I can't remember but i moved for grad school and my receipts are all in boxes back at my parents place. The last whole year is kind of a blur, I graduate, studied art history abroad, went to grad school - very whirlwind - and that before being doped up and forgetful.

I know before that though i had headaches all the time and i had issues. I was on stupid imitrex pills that worked but took forever and had me in lots of pain for a long time. I thought i had migraines. Like every others day, sometimes every few days. Then all of the sudden it got to be every day and then it got really bad and every and several times a day and that's when i got on injectables and topamax and found out about CH's as my supposed diagnosis. I was on topamax and headache free (not phantom free, but headache free) for a very long time. Like 6 months or more i think.

One day i was like "hmm, i dont seem to be having the effects that would come whether i have the headaches or not, why not try to ween myself off the topamax"  and i did.. and I was off for a good long time, through all of paris and through the fall and until now.

Where it's like what it was when things first went really bad. Yesterday i was all excited around 3pm because i had gone like 24 hours without any pain (normally get hit around 11am).  Got hit around 6pm. Then 2am this morning. Everytime I think it's getting better and i'm in some home stretch and the topamax is working i end up in pain a few hours later. It's just starting to become a joke.

So, i'm coming up on some decision making as i thought i'd not have to decide such thing as the topamax would be in full swing by now..

How long until i abandon hope with topamax?

If i do, how shall i do it? And i switch drugs, please tell me i can to one and now wait for the other to get out on my system.. please..?

I can assume if it starts working it's the new drug not the old one, right? Let's all pretend, right?

Verapamil eh?

Do you really think i could get o2 ordered and setup and minicansistered and everything in less time then it would take me to go through my last few packs of trex?

Cuz that's really what it comes down to. I am not paying for both - i now have to do something, my original plan was to have a few spare T-rex once topamax therapy was working (which it's not)  and buy more over time if needed should any be needed (which with my past history on topa would be unlikely blue moon events). Since i've gone through more Trex then i planned i need to restock, that's gonna cost me money, i could go buy oxgen instead, but if it cant be setup in the same amount of time and prior to my running out of my current supply of Trex then it's a no-go.

I hate to sound harsh about this - but i do remember my Dr. the first go-round getting me an oxygen prescription because i asked for it and arranging for the service and delivery and everything. That's when i had insurance (that was like 2 years ago.. wow.. i was one topa for like 1 year at least..)  i digress.. the point being I got the call from the service to get the delivery to my home and the setup the following the month. The next month. I had almost forgotten about the whole thing at that point - which right now kinda gives me some hope about this whole ordeal - but i do recall telling her to kindly shove it where the sun doesn't shine and hanging up. CVS can have more Trex by tomorrow.

Caffeine no good ey?  I noticed you said you get an 11am every day.  Have you tried coffee/tea/coke/redbull around 10:30 to see if you can push your CH back a ways?  Works for me, I am a 9am kind of guy.  Caffeine will push it into the afternoon lately, then I caffinate around 1pm or so.  If I am a little late I have gotten kipped pretty hard.  Caffeine at the first little bitty sign of the CH is my only chance.

Sorry if you have tried all of that, everyone is different and that's what works for me.

I too work a job that has me out and about.  I spend a lot of time in the woods around my city planting trees and killing weeds.  Before that I was a professional pilot.  Neither job is good for dragging around a canister of oxygen.  We all find ways to deal with our pain.  Above, I wrote my most successful technique and it sounds like everyone is trying to support you.  Hope some of this works.  Don't give up!

--Shaggy

This is the part i really don't get..

I wouldn't be walking around going "Hi, i have CH's, excuse me while i stab myself in the arm with Trex" like it was sane if there wasn't a better solution.

How are you people functional? I have this weird suspicion y'all have what in the romantic south we'd call "the vapors" and would just need to get the heck over it if you can really kick it with a can of coke or red bull.

Get yourself some dental work then some tinfoil and take a bite and that's usually my early warning tremor - think of it kinda like that water ripple in the cup effect from Jurassic Park. (See? I went with the Trex imagery and ran with it). Things get vastly worse very quickly from there.

Caffeine never works. Imitrex pills are not fast enough. Imitrex nasal spray was just a nightmare that - eww, just don't do it kids it does nothing, and tastes horrible.  I'm on week 3 of topamax and woke up at 11pm and 7am. This is coming off the other day where i went like 36 hours, but that was followed by like another bad night and a normal level day - so it's completely sporadic at this point.

This is really getting old. I kinda long for once or twice at a day at normal times.

As for the Kip scale I pretty much live at a 3-4, i wouldn't be bringing any of this up or going to the Dr if I wasn't hitting a 10 on a daily basis. At this point it's 2 or 3 times a day, heck 4 sometimes now if I time it right.

I think today is gonna be another Dr's office day and see about verapamil. I'm over topamax side effects and nil results at week 3.

Not even sure where to start.


Quote:

How are you people functional?

Let me tell you something: It's you too.


Quote:

I have this weird suspicion y'all have what in the romantic south we'd call "the vapors"

Maybe we'all are nuts, and this website is really a front for the medically insane.


Quote:

Imitrex nasal spray was just a nightmare that - eww, just don't do it kids it does nothing, and tastes horrible.

Actually it works for a great number of sufferers.


Quote:

I kinda long for once or twice at a day at normal times.

Don't we all.


Quote:

i wouldn't be bringing any of this up or going to the Dr if I wasn't hitting a 10 on a daily basis.

So you are seriously suicidal every day?

It looks to me as though you're looking for a treatment that is both convenient and completely eliminates your need to think about this condition we've all been blessed with. Sorry, sister. There is no such beast.

I've got nothing to offer you because what it is you're looking for does not exist.

At least try the oxygen route.....................Or lay there and bleed.

             Potter

Loric;

I have been where you are at in your head and it sure isn't a very fun place.

The truth is that I'm as functional as my cycle permits. Sometimes this is more functional and sometimes this is less functional, but until the ravens start dropping bread in my mouth and paying the bills, I have no choice BUT to be functional at some level.

IMO the key is management; how you do this is totally up to you. I long ago stopped mincing words with my neurologist. When what I'm doing isn't working (as it isn't RIGHT NOW !), I make an appointment ASAP and get something done about it. I keep a headache diary and I carry it with me so that when he says something dumb it is very easy to refute.

I'm self employed and I have crummy insurance. Part of managing my headaches is keeping enough of a cash reserve on hand at all times so that I can make the choices my neuro suggests. Sometimes this means foregoing something else I wish to do. This is part of my committment to managing a condition that is LIFELONG. I do this to keep ME functional during these episodes.

Right now I'm managing aborts with straight oxygen. Small cylinders cost $ 12 per fill and I'm running through one E tank a night. Like you, I've had shadows of varying severity every day for some while. Coffee DOES seem to help ME with the shadows. Similarly, 500 mg Mg per day also seems to help with the shadows and with killing the headache sooner so I take that too.

A combination of strategies CAN work. Getting unstuck by figuring out what is NOT working is the first very necessary step.

PFDAN !

Jason

Using O2 and Imitrex both will almost assuredly save you money. You use the O2 when you can access it, and the trex when you can't. The O2 is way less expensive than trex. So it may cost you more money tomorrow if you get both trex and O2, but by the end of the week you will have saved bux.

Maybe this will lend some credibility (?): I aborted every single attack during my last episode that ran about 2.5 months with the combo O2/Imitrex approach. Just O2 or trex alone would not have allowed me to do this. My episodes are not mild and I get hit strongly several times a day at peak cycle.

Then there is the pscyhedelic elephant in the room staring so many of us right in the face, daring us  to get some powerful relief, but we ignore it and chose the worst pain known to mankind instead, due to stigma, preconceived notions, or cultural/religious beliefs that taking granl mal risking topomax is OK even though it doesn't work, but a little sub hallucinogenic dose of a medicinal plant is not OK, even though it does work. I know I personally dismissed the idea outright the first time I read of it, but a quick look into the subject can give a skeptic pause.

Since you are all graduate studenty and junk, would it help to know that top medical researchers are launching clinical trials of LSD (and it's non hallucinogenic cousin BOL) for CH with promising results in Europe and at institutions such as Harvard medical?

Sorry if I'm coming on a little strong, leaping up on the soap box with that subject - shaggyparasol got me going and I couldn't stop.  :D I haven't had access to psilocybin, but I'm not at some university where it's probably an option on the lunch menu at the cafeteria.  :D

So.. since I again contend the page that "has all the information you need" really does not, I googled for oxygen supply info.. I suspect this would be overkill with requisite regulator upgrade and free bandaid kit?

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Quote:

...since I again contend the page that "has all the information you need" really does not,

:-X

Brew wrote on Mar 8^th, 2010 at 1:16pm:

So you are seriously suicidal every day?

For the past 3 weeks i've been dealing with a pain level i'd describe as debilitating to a point of not just being unable to function but truly incapacitated at times. Like really falling over where I stand.

There comes a point in dealing with this, i think at least, where you stop considering suicide and just sort of go on living because you know it's going to stop hurting eventually. It's the times when it takes longer then usually or it hurts more then normally that you really question just how much you can take or if you're really going to break this time, but in between you're just as sane and logical as any other person and certainly not rushing out to find any sharp objections - less the topamax stupor of course, then the sharp objects find your :P Hence the interest in free bandaids.

Brew wrote on Mar 8^th, 2010 at 3:37pm:

Quote: ...since I again contend the page that "has all the information you need" really does not, :-X

Like prices.. even vague prices.. and actual supplies needed.. has no one here heard of a supply or shopping list? Which companies? Where? How? Who? None of that is answered. I have no idea where to go, what to get, or how much it's supposed to roughly cost.

I could just buy that $300 emergency oxygen kit thing and the $15 regulator upgrade and then that $30 mask from the supporters of this website and heck lets throw in $50 of seeds from Mexico and be set I suppose but is that really "set" and not just throwing money away?

I don't think you should buy the 'emergency oxygen' kit. You will be better off spending the $300, probably much less, to get set up with medical or welding setup.

There's a very high probability that you will be dealing with CH the rest of your life. So deciding now to take positive action for your best interest is just that.

The cost's of getting O2 setup varies from State to State and supplier to supplier, so YOU have to take charge and make the calls to find out. Some of the above post's have given you the cost's others pay.

As far as being on scaffolds, what do you do now? Is that safe? O2 is the safest med we use for CH.

PROPER USE of O2 requires you know what is needed, and how to use it.

Good Luck, Don

OK, here's my take.

1.  Get a script for O2.  Find out the best place to get medical equipment and contact them.  Make sure they give you a non-rebreather mask.  Make sure the regulator goes up to at least 25 lpm.  If you have a few bucks, or mom and dad have a few spare, order the mask on this site and buy a regulator from ebay (25 lpm MIN).  The mask and regulator will cost you under $100 and the O2 tanks should be cheap to rent or buy.

2.  Ask your doctor for samples of any triptan he has.  There is a new one out that docs have samples of.  I have them but havent tried them yet.

3.  May I suggest lithium over topomax?  I think you said verap wasnt good for you, so maybe lithium.

4.  The caffeine route NEEDS taurine too.  Make sure you tried energy drinks with taurine.  Caffeine by itself works some but taurine better.

5.  You control your life, not CH.  Take control and do everything you can.  I work through headaches (with abortives at my disposal) and it makes me feel better about it all.  My worst are usually at night and thus work ones are easier to work through, BUT it still helps to do everything you can and not let CH beat you!  Staying in bed is not a good option for me.  I get hit worse when I am not moving.

Good luck!

Ugh.. this sucks. No new updates. I don't even know what to ask for, but i think i'm going back to the Doc today. I've been putting it off with hopes that topa would just take a few more days to kick in. I don't think a higher dosage will do any good, could be stupidly wrong though, dunno.

More concerned with figuring out prevention then aborting right now though. Aborting i got down, prevention i'd like to figure out.

Going to see ask about prednisone, if anything just so i can be "normal" for a little while.

Loric, we all understand how difficult it can be to comprehend while being in pain, the lack of sleep, money, Dr's etc. We have all been there, myself right now.

Try to look at the information you've been given and make your desicions. I've had to print out what is being said, so I can read it over and over, until I understand it.

Prednisone can give you a much needed break, but most often the CH is back once you finish the Rx, 5-10 days. For a few it breaks the cycle.

The O2 info is here in these posts, it's up to you to use it or not.

Hope you find relief,
Don

Well, today was a good ol' fashion "Dr is an idiot" day.

I don't even know why I gave in. I think I was desperate, but there is good news in all this - one, I took mental notes and googled some of the BS he fed me and was like "what the crap?"

He wouldn't give me verapamil and mentioned heart block, but tried to pretend my pulse rate was low, but it's entirely normal, cuz he showed me the number and I remembered it - and at the same time my blood pressure is actually high 160/90.

And let's not mention the two stupid shots in the butt he talked me into (eh, at least I got a cute nurse). One was  an anti-inflamitory and the other  for migraines. Whatever - I put up a good fight, I swear. In the spirit of "screw it, what harm could it do" I finally gave in.

So. things I did learn from all this.. maybe topamax is working?  On my way to Dr's I got a "minor" headache. I'm not really sure. I was like "ouch" but it never really escalated, just kinda lingered. After about 10mins of this, I went into a 7-11 (and seriously, i normally can't make it 10mins) and got an energy drink with taurine, drank that, and then went to the Dr's and was told i have high blood pressure by a very concerned young nurse.

Doctor gave me the prednisone btw, told me i can start taking it tomorrow. Haven't had any other hits though..

Went to the grocery store. Got more drinks with taurine. Big ones, little ones, shots, cherry, pina colada. Had another mild headache that passed in like 10mins, didn't even need the drink.

Not sure i'm cured.. but i'm optimistic.. still going to take the topamax on schedule. Certainly not crediting the shots in my butt. Will see how tonight goes for the prednisone..

Oh, in case you're curious what's injected in my butt:

Toradol: 60mg
Nubain: 10mg

Looked them up - they're really both just opiates it appears. Oh well, i guess i got the good stuff *shrug*

Correction - One's an "opioid" (synthetic) and the other is just darn spiffy anti-inflammatory.

I'm at like almost 36 hours with zero CH hits! I get some shadows but i'm kinda ok!

And i didn't take the prednisone!

I stuck it out through the night after butt-shots (thank you Doctor useless) but kept myself on the topamax and melatonin regime I've been on. Two hits that night.. one at like 3am.. another at 7am..

But nothing since then...  that's a good long time ago. I got through last night  8-) with nothing.

I hope i'm not overly optimistic. Still taking everything right on schedule but holding off on the prednisone as a "in case of emergency" ya know?

Side note - eye effects. Not pain, not pressure. But sort of a kinda twitchy almost like shutter or something, I remember it from before from the topamax. I realized in the last 48 hours that I used to have it intermittently when i was on it before, especially when i was tired or stressed, but this go round this is the first time it's made an appearance and this seems to be the first time my CH has been letting up. Maybe it's a good sign?

One can hope..

Go Loric, sure hope it's a sign the cycle is ending. May be the Topamax kicking in too. I wouldn't change a thing at this point. If you start to get hit again then I would start the Prednisone.

Curious, how did the Dr Rx the Pred? What Mg's to start, etc.

I stopped a K-8 wakeup this AM with the O2. I'm just coming up on my peak so I still have a way to go. My cycles last up to 6 mnths. 6 weeks in now.

Glad to hear you've gotten some PF time.

Don

10mg tabs, starting at 60mg the first day, 50 the next, etc.. so like 6 days.

Roughly identical that what my last general practitioner did if I remember correctly - except hers came in a blister pack with color coded instructions. Her office was much snazzier and had lollipops. She was part of a larger family practice. I miss her sample closet :(

Well, this morning, right at the time change, 2-3am there it was.. then again a few hours later.. rebound or lingering headache around 10am, it wasn't as bad, but hung on for a while.. and i've been in a fog most of the day since then.

Grr..

Now i'm wondering if i double dosed the other night on topamax and caused miracles of science when i wasn't sure if i had taken it or not (really needs to write down or check it off when he takes pills) as i distinctly had a "did i take this before dinner..?" moment and took it after dinner "just in case" and counting backwards doses doesn't help since i dont remember if i started taking them in the morning or the evening.

Yup, totally starting to write down when i take everything. Still havent taken the pred.. still not sure i want to. :(

Well.. here's to you demon. Om nom nom nom!

6 pred pills down the hatch.. lets hope that works, and i don't vomit or something - and i did just eat, like I was instructed to.

Loric wrote on Mar 14^th, 2010 at 7:22pm:

Well.. here's to you demon. Om nom nom nom! 6 pred pills down the hatch.. lets hope that works, and i don't vomit or something - and i did just eat, like I was instructed to.

Have some munchies standing by.

To help prevent double dosing I have some of those pill containers that have slots for each day of the week. I've had the double dose problem obviously.

At one point I was taking so many meds that I have one container for daytime and one for night.

Don

I obviously double dosed, and more then once, as i went to reorder my topamax as i'm nearly out and pharmacy website bounced me back saying i was early for my refill. Crapola.

Got a few days left, so i'm going to make phone calls tomorrow and see about sorting that out. Would suck to screw up my dosing right now if i really am getting i right or am going out of cycle or something.. bleh.. can't win for losing.

I seem to be doing ok with the prednisone.

They don't call it Dopeymax for nothing....

So far so good.. Now i'm just worried as the dosage goes down on the prednisone.

Crossing my fingers the prevent takes over for the Pred for ya. The pill box is an excellent idea, I don't take topomax so I can't blame that, I'm just old and can't remember how many pills I've taken! Those 7 day pill boxes are great aids.

Joe

I'm on like the 4th day of prednisone and done pretty good, but yesterday and today around the time of my dosage I've noticed a sensation of what feels almost like sinus pressure on the same side as where I get my CH.

It's really mild though, like not even pain but moreso like being stuffed up and it usually subsides. It just troubles me - like that's a sign that the second I go off the prednisone I'm going to be dealing with full hits again. *sigh*

[quote author=15253220570 link=1267774425/5#5 date=1267815576]You can get O2 with a prescription, and if you have insurance it should pay for most or all of it. If you don't have insurance, you can go the welder's O2 route.

Click on and read the oxygen info link on the left. Here's a direct link to it:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE in my case, the oxygen supplier I use only needs a docs script.  My "M" tank cost $36/fill.  Not bad considering my insurance doesn't cover a penny.

Quote:

There didn't seem to be any practical advice at all on there for anyone who did not have access to any of the normal means for getting oxygen prescriptions, supplies, anything..

Lorac, you are in Fullerton which I know very well.  IF/WHEN you decide to get a script for medical 02 from your Dr.  Look in the phone book for either Apria or Lincare.  They are both excellent suppliers and will work with you to get to set up.  I pay 10.00 per e-tank.  Regulators can be bought on-line and if you can't afford the great non-rebreather for sale here right now, I will send you several cheaper versions to tide you over til you can. 

Update: Today's the last day of prednisone. Doesn't really matter, got hit last night anyways. Oh well.

It was just one though, which is.. rare.. so I'm trying to decide what deathcon level we're really at.

I'm sure it's because i was coming off the pred, but not so sure if it wasn't because i had screwed up my topamax dosages in the last week due to refill dates and stupidity.

Looking into new Dr's appointments, thinking of abandoning the guy who wont give me verapamil and who has never mentioned O2. Looking into the whole student health through the University (which I heard from others was a  fiasco to deal with).

They do EKG for free, yay, which means they'd likely fork over the verapamil which everyone else wont let me have - but when using their online scheduling tool if i put in "reason code"  -headache- no appointments come up but if i put in -facial pain- then there are openings with GP's.

I'm not sure I want to deal with that level of BS.

Advice?

Loric wrote on Mar 19^th, 2010 at 6:46pm:

Advice?

Silly question. Take the first appointment you can get and stay after it. Who knows? You might get a doc that actually knows something about patients, patience, medicine, and healing. Some of them are even so not full of themselves that they will learn from you.

I hope that wasn't too unfriendly and jerk-like.

The way their system appears to work is that it assigns a block of time to various problems/issues/etc.. and "headache" or "backache" or anything remotely major or lengthy gets 30mins while an initial consult or "facial pain" gets only 15mins. Apparently there's nothing the system is pulling up for those 30min blocks, at least not that i could convince it to pull up.

I think i might have actually just told it "high blood pressure" and left it at that even, since i want BP meds as it is. Did my online new patient forms and now i twiddle my thumbs until Thursday.

Hopefully this works out like one of my old dentists offices where the scheduling system acts like there's nothing available until you're an established patient, then miracle of miracles there's openings based on "priority" and since I tend be cooperative with scheduling people I tend to be a high priority.

Brew wrote on Mar 19^th, 2010 at 9:49pm:

Loric wrote on Mar 19th, 2010 at 6:46pm: Advice? Silly question. Take the first appointment you can get and stay after it. Who knows? You might get a doc that actually knows something about patients, patience, medicine, and healing. Some of them are even so not full of themselves that they will learn from you. I hope that wasn't too unfriendly and jerk-like.

Brew....PERFECT...

'twere me loric....I'd tell 'em anything close that got me in the door....then the work begins and I'd hammer 'em like I was getting....

Best,

Jon

Loric wrote on Mar 19^th, 2010 at 6:46pm:

Update: Today's the last day of prednisone. Doesn't really matter, got hit last night anyways. Oh well. It was just one though, which is.. rare.. so I'm trying to decide what deathcon level we're really at. I'm sure it's because i was coming off the pred, but not so sure if it wasn't because i had screwed up my topamax dosages in the last week due to refill dates and stupidity. Looking into new Dr's appointments, thinking of abandoning the guy who wont give me verapamil and who has never mentioned O2. Looking into the whole student health through the University (which I heard from others was a  fiasco to deal with). They do EKG for free, yay, which means they'd likely fork over the verapamil which everyone else wont let me have - but when using their online scheduling tool if i put in "reason code"  -headache- no appointments come up but if i put in -facial pain- then there are openings with GP's. I'm not sure I want to deal with that level of BS. Advice?

Advise.........quit the poor me whining and get oxygen.

       Potter

vietvet - don't post in my threads. You're a jerk.

Loric wrote on Mar 20^th, 2010 at 5:20pm:

vietvet - don't post in my threads. You're a jerk.

Why,  are you some special case?

     Potter

I told myself I was gonna stay out of these two threads you have going, but the 'moral high ground' statement on the other post was too much.

If you spent as much time procurring the items suggested to you on this board numerous times, as you do determining who is on the morally higher ground, you would find a lot more PF moments in your day.

Potter actually gave you the best advice possible in his last post. GET 02!

I hate to be judgemental but you sure seem to doing a lot of "reading" but not much "listening".