been off topamax for a couple of yrs but started back yesterday.only 75mg(200mg prev)had my first night of beast free sleep last night and have felt pretty good today as well.so now my cocktail is
1200mg lithium
75mg topamax (up to 200 if needed in future)
12mg melatonin
still waiting on my o2,,according to na for neuro someone is supposed to call me to set it up,,,still havent heard from anyone though


-jason-

If Topamax is working for you that is great and I would continue to take it.  For me Topamax didn't help my ch and turned me into a zombie, as far as the medical side affects I wouldn't worry about if you are episodic and will only take it for a short time.  Im sure others will chime in and give you there opinion.  Good luck and keep kickin some beast a$$.    Phil

sorry im a newb shoulda clerified,,,ive been chronic for almost 10 years now,,,hence the excitement over the pf night,,,,,,,
i am currently out of my imitrex inj,,and as i said still waiting on o2,,as you all know its always a uneasy feeling going to sleep with nothing to fight the beast with...whats all this im reading about the energy drinks?ive never had one but if you guys and gals think they are worth it ill def go get some right now,,,just say the word

-jason-

Energy drinks help to abort if you slam down atleast half of a Red bull or Monster make sure you check the label and get the ones with 1000mg of Taurine.  As far as the Topamax goes I dont know the long term side affects, it has nick names like dopamax or dopeymax because for me and several others it made us feel dopey, if this dosen't happen to you then stay on it but I wouldn't stay on it long.    Phil

What's the role of lithium there? How much does it help you?

- Best regards and PFDAN,
Rosa

well i just started the lithium about a month or so ago and it has seemed to help...my day time attacks have all but stopped (all but),,just cant seem to keep the beast away at night ,,and i mean EVERY night..melatonin worked for me for about a week but thats all...im still taking it though,,,had a good night the first night back on the topamax but that was it ,,i seem to have good results with meds when i first start them then the results fade fast..dont know if anyone remembers me talking about doctor ordering me some o2,,,well they finally called me today and what a joke,,,he ordered me a max of 10lpm and oh yeah my bcbs wont cover for ch,,,i explained to the guy from the o2 place what i wanted and what i needed (from what i learned on here)he called me back and said he found a reg in the back that would go up to 15lpm...wooo hooo....im supposed to pick up in the am ill update u with what i get tommorow

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Lithium is a prevent.

cool beans on the 02
thebb

how long do you think an e-tank will last at 15lpm...also did i see on here somewhere that my doctor can do something to override my bcbs not covering the o2?they told me its 10 bucks for an e-tank  but they are about 40 minutes away from me and they want 50 bucks to deliver.man it would be nice if bcbs covered and they just delivered and refilled as needed instead of me having to go to work late because i gotta drive 40 minutes to buy o2 not to mention when i run out and need a refill...

you will get about 3 or 4 aborts on an E tank. Thats at 15 minutes a treatment. Get the doc to fill out a need for medical necessity form and submit that to the insurance. It should say the 02 therapy is for acute pain. Your doc should know.
all the best
the bb

Assuming a full "E" tank is at 2100 lbs/inch² and 15 lpm, It will last about 35.47 minutes.

Please reference a calculator here:

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Wishing you well,

Ray

thanks all...man im kicking my self for just now finding this place...its like i was in a stand still just pain pain pain ,,,now at least im learning how to fight back ,,theres a sense of empowerment that words just cant describe,,,i sincerely thank you all and whoever is responsible for this site

Thank DJ he's the webmaster here. Just kick that demons ass.
And then pass it on.
all the best my friend
thebb

I had an M tank for use at home.  Beats having to refill so often.

Jerry

Topiramate works at taking the steam out of these headaches of 30 plus years, for me!...at just 75 mg per day along with 20 - 40 mg of amitriptylene to assist with sleep patterns. It does what a myriad of conventional, unconventional, and doctor prescribed experimental drugs and even oxygen could not do for me.
There is a body of evidence, as written in a white paper by Todd D Rozen, Director of  Headache Research  at the Cleveland Clinic Headache Center, that Topamax in a dose of 75 mg per day is effective for most cluster sufferers. Some may need upwards of 400 per day,but those higher doses are more typical of treatment protocol for migraine. He recommends starting at 25 per day and ramping up in 25 mg increments every 5 days to 75 per day and remaining there for several weeks before deciding if the dose needs to be adjusted higher. "Some patients experience a worsening of attacks when the dose is raised above a certain limit" he writes.

I find i adjust quite well to topamax by ramping up very slowly by using the capsules (15 mg) and taking several weeks to achieve the 75 rate....some memory and some mood issues but they balance out quite quickly when i maintain at an even dose for a time.

Jason,

Sorry for just now seeing this post (usually check the Specific board)

I've been on Topamax for about 10 years now - it's been my lifesaver. Right now I'm on 100mg at night (BTW - I'm chronic). Have been up to 400 at times, but my maintenance dose is 100mg. I take the dose at night (regardless of what it is) and have not experienced any side effects. O2 is my main abort and I swear by that.

Your doc SHOULD have ordered MORE than ONE tank (I keep at least three on hand - when two get empty - I ORDER more!). If they're charging that much for delivery you should get a M tank (the big one).  I have a one of those in the barn (Welder's O2) just in case. The little ones are just easier to haul around (I'm a delicate wimmen ya know  :) ).

I know you're a newbie here and we're probably overwhelming you (we tend to do that at times) but take a deep breath - we mean well and are trying to get you out of pain as soon as possible.

Just hang in here and we'll talk (or write as the case may be) you thru this one.

Hugs BD

yeah im not sure if the script specified the amount of tanks i could have,,, they were gonna give me 3 e-tanks but i knew that wasnt gonna work for a chronic ch'er,,so since i was paying cash they let me basically get what i wanted (except for the mask arrrrggghh)so i got an m-tank as well for a total 1-mtank and 3-etanks..now i just have to order an optimask,,,but i have a disposable nonrebreather to get me through til then...gonna try to get my neuro to get my insur to cover the o2.wish me luck ;)

FYI - the "disposable" non-rebreather will last a long time, so don't dispose of it till it wears out.  (Well, some people take that literally).

And another thing (this is not usually a problem, but has been so that's why I mention it) DO NOT GO TO SLEEP while sucking the O2 with the mask on. If you think you might fall asleep - CUT OFF THE ELASTIC and HOLD the mask to your face. (This is not a bad move anyhow). Most of us "oldtimers" do that as a matter of habit.

These are just a couple of things that most of us don't think to mention, but for some reason came across my feable mind this morning.

Wishing you a PF day...

Hugs BD

yeah thanks for the tips,,and i guess maybe thats part of the reason for the need for the prescription for the mask...but yeah makes sense...guess if you fall asleep and tank runs out well you can paint the picture..i imagine ill just get rid of the straps anyway,,they look rather annoying

-jason-

I don't cut or remove the strap.  I use that to hang it from my tank, BUT, I never put it over my head to hold it on, I just use my hand to hold it in place.

BTW, have you read all the tips on using oxygen?   In the Medications, Treatments, Therapies section, Stephanie (MrsDeej) has stickied a thread called: Tips for CH Sufferers.  There are a lot of good suggestions there, but specifically, response #10 and #11, are some things I have learned on how to use O₂ that should help you.

If you have any other questions, don't be afraid to ask them.  You also have my phone number, don't be afraid to call and ask.  The only dumb question is one you don't ask.  

And I will make sure that that mean, crotchety old biddy, Barb, doesn't pick on you for asking ...

Chuck

Don't pay a bit of attention to that old f*&^ Chuckles when he talks about that Sweet Little Old Helpful Barb (she goes about the world doing only good things - everyone will tell you that - yeah right!). Chuckles just gets out of the home occasionally and gets his hands on a keyboard and tries to give advice (which BTW you SHOULD listen to most of the time except when he mentions Sweet Little Ole Barb).

Now Chuckles - go lie down and listen to the nice men with the pretty white jacket.... :-* :-*

Hugs BD