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Sumatripton help


Henrithree
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My healthcare provider is giving me a hard time about my sumatripton prescription.   I was wondering if it is possible to become dependant or abuse this type of medication?  Does is cause more headaches to occur?  Does it make episodic clusters last longer (longer cycles)?  I know this medication helps me short term,  but is it making it worse in the long term?

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  • 3 weeks later...

There is some evidence of rebound headaches. I have taken it pretty heavy with no noticeable effects. Look into “splitting doses.”  Really half a dose stops an attack for me. Also, and I know everyone is different, but wait until you know it’s going to be bad enough to justify. Early on, I found myself using an injection at the first inkling of pain. I learned that some of these go away.  Let them know Sumatriptan is the gold standard for cluster headaches. They call them suicide headaches for a reason. I have not tried it, but oxygen has been effective for many. 

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There is a daily maximum and monthly maximum. I believe it mainly has to do with the vasoconstriction. Some one here was talking about the studies used to get the drug approved, deaths and heart attacks. Don’t remember the specifics. 

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It's best to try and abort you're attacks first with oxygen. I know it's difficult but saving the sumatriptan for the worst attacks at night or the times you're away from oxygen will help conserve. Most of us get scripts out of cycle to stock up..Depending on what injections you take sometimes you can modify the 6mg to give you three 2mg injections. Theirs a guy on utube who shows you how. 

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I asked my doctor (GP) about oxygen a couple years ago and he seemed resistant and I didn’t push. He prescribed me the Sumatriptan injections instead and it’s been the first thing that has stopped my pain in its tracks. I have begun splitting the injections. I have a doctor appointment tomorrow and plan to ask about the oxygen again now that I’ve read so many positive results...

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You should insist on it, the script should be for 15-25LPM. My doc had a form from the Oxygen supply co. On the east coast Apria healthcare is very easy to deal with. The drivers all know at least one pt with cluster headaches. Ask for the Msize tanks and 3 tanks has been perfect for me I either call when I start using the third tank and they replace 2. Or I wait until I’m half way through the 3 rd tank and I get next day delivery. 

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  • 2 weeks later...
On 3/24/2019 at 9:18 PM, EggMan said:

I asked my doctor (GP) about oxygen a couple years ago and he seemed resistant and I didn’t push. He prescribed me the Sumatriptan injections instead and it’s been the first thing that has stopped my pain in its tracks. I have begun splitting the injections. I have a doctor appointment tomorrow and plan to ask about the oxygen again now that I’ve read so many positive results...

there is no money in O2  for these drug dealers ,  so they  don't wanna offer it, But triptans are more expensive and will cause rebound headaches so you gonna see the doctor more often.

 

Welding 02  rental gonna cost you $30 a bottle.

Edited by johncluster
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1 hour ago, Into Light said:

The 15/lpm regulator is the only one Apria says it delivers. I have been trying for months to get a high-flow regulator and may have found only one source for a 60/lpm and none for demand valve.

I bought my 25lpm regulator on amazon. Some one posted a link for me. It wasn’t too expensive. I use Apria too and have become friends with my delivery guy. He said they had one 25lpm regulator but he was never able to find it at the shop. Otherwise Apria has been great for me. Delivering same day or next if I fall asleep on my last tank or something...  they gave me 3 M tanks. How has your experience with them been. What state are you in?

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I’m in FL. Apria are great on delivery. If I don’t mind waiting on hold. I have two M-tanks and the first is moving into the red zone.  I’m episodic spring and fall, and am on 480mg of verapamil which mitigates the pain levels to max out at around 7 or so. I don’t know if it’s true for others, but then I move into a chronic “mild CH” mode. No matter what time of the year I suffer from an inability to think clearly and follow through on projects.

the 15/lpm reg from Apria doesn’t deliver what I need, unless I hold my breath until the 3-liter bag on the Optimask fills,  but I still suck that empty in about 1/3 of an inhalation.

I didn’t see anything for me on Amazon, but,I had correspondence with a lovely woman at (?) Linde who undertook the effort to find me one source for the very high-flow regulator.

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 I move into a chronic “mildCH” mode.

Not sure what this means into light can you explain it to me? Have you checked on LETGO app or Craigslist they usually have 02regs on thier sites for sale.. I'm sure with all the retirement people in FL there's alot for sale.. I look at the sites daily for 02 stuff some really cheap too..

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11 minutes ago, Into Light said:

I’m in FL. Apria are great on delivery. If I don’t mind waiting on hold. I have two M-tanks and the first is moving into the red zone.  I’m episodic spring and fall, and am on 480mg of verapamil which mitigates the pain levels to max out at around 7 or so. I don’t know if it’s true for others, but then I move into a chronic “mild CH” mode. No matter what time of the year I suffer from an inability to think clearly and follow through on projects.

the 15/lpm reg from Apria doesn’t deliver what I need, unless I hold my breath until the 3-liter bag on the Optimask fills,  but I still suck that empty in about 1/3 of an inhalation.

I didn’t see anything for me on Amazon, but,I had correspondence with a lovely woman at (?) Linde who undertook the effort to find me one source for the very high-flow regulator.

you can connect 2 bottles at the same time if you have two regulators with a plastic T splitter, and set one to 10L and second to 15L

You could probably get more bottles too.   I used to have 8 tanks at home , they didnt care.

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I bought mine on amazon a few months ago for a similar price. I can’t find them there. Some one helped me with the link when I asked for help on the general board. But this place https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540?gclid=Cj0KCQjws5HlBRDIARIsAOomqA0oVN55WssQAcO4tqei2sL2QSAtynIMJH4zhVozk-sjkdQE4qEThOcaAqXOEALw_wcB has one. Make sure you select the 0-25lpm model if you order from them. 25 lpm fills the bag nicely but it fills extra fast if you exhale through the valve if you know what I mean. I have the same mask. I use the mouth piece...

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Just something to think about regarding the M tank (large tank) regulator. . . . The one FunTimes thoughtfully linked to is a medical O2 regulator. A welding regulator will work fine with that tank, and it has the advantage of potentially going higher than 25 lpm should you be someone who will benefit from that, and it's likely to be less expensive, like this one: https://www.amazon.com/Yaetek-Regulator-Cutting-0-200PSI-0-4000PSI/dp/B073P1C18S/ref=sr_1_2_sspa?keywords=540+CGA+oxygen+regulator&qid=1554386813&s=gateway&sr=8-2-spons&psc=1    Disadvantage of the welding reg is that it does not have LPM settings as the O2 reg has, so you have to get where you want to be by feel.  I don't think that's a very big deal, but it is a difference. The other thing is that not all welding regs come with the barbed fitting you can see on the one at the link I just gave. The barbed fitting is what is wanted for connecting the mask tubing. There are fixes for the absence of that fitting, but it's best to be sure you're getting one with that adapter.

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3 minutes ago, VocTeacher said:

will the o2 machine work as good as the bottles so you wouldn't need delivery's? 

If by "O2 machine" you mean a concentrator that makes O2 from room air, the answer is generally no, it won't work as well, for two reasons: (1) there is a some room air in what it creates, so you are not getting O2 that is as "pure" as what you get from a tank, and that seems to affect the speed of aborts, and (2) I suppose there must be concentrators that go up to 25lpm, but most of them don't, so you probably wouldn't get a best-quality abort. 

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 Just for the record studies done looking at aborting clusters earning Class A evidence for efficacy were all done at flow rates of 6-12 LPM.  If these flow rates are not effective for an individual then trying higher rates (masks and technique too) is certainly acceptable but if you doc and O2 provider start you with a regulator that can only do 10 LPM don't despair the chances it will work are pretty good.

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6 hours ago, Pebblesthecorgi said:

 Just for the record studies done looking at aborting clusters earning Class A evidence for efficacy were all done at flow rates of 6-12 LPM.  If these flow rates are not effective for an individual then trying higher rates (masks and technique too) is certainly acceptable but if you doc and O2 provider start you with a regulator that can only do 10 LPM don't despair the chances it will work are pretty good.

10LPM will not work for average size men with non -rebreathable mask 3L bag.  Your bag will be empty after the first 2 breath ins.

I need 25LPM first 1-2min 

20LPM 2-5min

the rest of the attack 10-15LPM 

 

10LPM is very shallow normal breathing, calm breathing,,,for me,,,doing one deep breath and your bag will be empty. 

 

Edited by johncluster
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