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Hiya Siefried, Topamax does indeed have a bad rep...and I've been guilty of adding to the noise...but when dealing with multiple types like you are I'd sure as hell give it a try! ...and definitely a serious one. By that I mean an extended period (at least 3- 6 mos) and various doses. I fear that many folks start taking a med and immediately make a decision based on initial side effects or lack of success...when it is common, in many cases, for full benefit to take weeks or longer to show and side effects to reduce or disappear after a period of time....and different dosages to have COMPLETELY different results (e.g. verapamil useless for me at < 480-1040 mg/dy). I fully understand and appreciate the reports present here and other forums about experience with this and other meds...and I would definitely take that into consideration....but there is only ONE way to know for yourself...and that is to try! A person I knew had good success (don't recall the dose) with it, and was able to mitigate the side effects by taking at night before bed. My issue (the dopeymax effect) was an inability think, write, or speak at a level required for my job....and concentration lapses that made driving a dangerous prospect. I powered thru for 6 mos because nobody knows desperation like a clusterhead....and finally quit because it just didn't work. Depending on your work/life situation those issues may not be debilitating...and may even resolve. best jonathan edit to revise suggested attempt timing....upon further thought, 6 mos seems too long for a heavy effect med like this...more like 3-6. i'm up over 20 tried....most I gave at least 6 mos...but reality and life and a clusterheads knowledge of their own body should be considered...

Well, that sucks Seigfried! Many say that Topamax makes them feel 'dopey'. That seems to be the most common complaint. And I am sure that is dose dependent. It has been nicknamed Dopeymax by some. It does help some CHer's. I was given a script for it years ago. One of the main side effects is weight loss. Being underweight at the time, I declined to take it. With most people at home, I suspect that 'dopey' might not be a problem. I do not recall how much I was to take per day now, sorry! Are you taking the full D3 Regimen or just D3? The full thing is what works for me.

No. Tanks get refilled and reused, although when a supplier brings you more O2, they bring you a different tank and take the one you have back to be refilled and eventually given to someone else. Or, if your question is different -- you will use the same tank for multiple aborts. Tanks come in different sizes, holding different amounts of oxygen. The number of uses depends on many factors, including how much O2 is in the tank and how fast you use the O2 that's in the tank (this is called the "flow rate" and it is measured in liters per minute). With a really, really big tank, a person might get five hours of use. With the smaller tank (called an E tank), a person might get something like 30 minutes.

ps rx must be written oxygen 15Lpm for Cluster Headache with the diagnosis code. If the doctor writes higher lpm than 15, and the delivery company has no regulators other than 15lpm (which more than mine don't I rexpect), you may experience, as I did, a refusal to deliver. Just take the 15 lpm rx, then get your own WT Farley regulator. Mine goes to 25 lpm and i need to start with that flow rate and then reduce it to where it keeps the 3-liter Optimask reservoir bag filled. WT Farley – steel and brass. I think I got mine on Amazon though you can use their website.

Depends on where you are probably. Im in FL and self-pay Apria $79/month unlimited refills. Make friends with your delivery guy...s/he will be the lifesaver.

I am inclined to agree, as long as you can get it reasonably quickly and are not committed beyond a reasonable initial co-pay. A small possibility . . . Some people have found that EMT stations or firehouses with O2 are willing to let them use it in an emergency. In current circumstances, this might be a lot less likely. But if you have such a place very nearby and can get there during an attack, it might be possible. Another reservation about this is that O2 is not always very effective on the first couple of uses (though I would said that most of the time it is effective enough that you can tell whether it's helping or not).

graci, your question is probably more complicated than you think . . . . The simple answer is that for you, to test whether O2 works for you, you might have to pay around $100 for the whole welding-based setup: a small filled tank, (20 or 40 cu ft -- maybe $40-60?), a regulator (maybe $30-40), and a basic mask (maybe $5-10). If it does work and you want to set up a more optimized system, you'll need at least one larger tank (for home use--you can use the smaller one for portability, in the car for example), maybe a second regulator (so you don't have to use the same one for the big and small tanks), and maybe the better mask that is made for people with CH. All that might add $120-150. Then you will have to bring in the tanks when they need to be refilled, and there is a cost for the refill plus the cost/hassle of trips to the welding supply place. When you get medical oxygen from a supplier, you typically have some kind of co-pay (others will have to say what that might be; I just don't know and I think it varies quite a lot). Your payments include a regulator and a basic mask. Depending on the supplier, you might get a large tank and a smaller tank, and basic regulators for both. They come to pick up used tanks and replace them. You might want to spend some extra for a more effective regulator (or regulators) and the better mask. How things work out with the supplier seems very dependent on the supplier and the delivery people. You can read more about welding O2 here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Good! I hope it helps. Doctors usually fax the prescription to a supplier (maybe they have a more modern method of sending them these days). This advice is from this file, where you might want to read, or re-read, the part about oxygen: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ "To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working." Virtually all private insurance must eventually cover oxygen for CH -- but it often takes a protracted fight to get it. Medicare and other government programs generally do not cover O2 for CH, although there has been some consideration of waiver to that during the current crisis. See this post if that is relevant to you: https://clusterbusters.org/forums/topic/6975-urgent-request-regarding-oxygen-medicare/