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-

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. 

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:

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

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

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.

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.

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.

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.

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

             Potter

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.  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. 

Quote:

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


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?