How to get prescribed more than 6 sumatriptan injectables a month.

[Mezzo]

Hello I have recently been diagnosed with cluster headaches. Although I’ve had these headaches for years they’ve never been frequent enough or severe enough to make me go to the dr. I’ve had multiple attacks every day for over 2 weeks now. Mri mra cat scan all normal. Neurologist prescribed my emgality and sumatriptan injections. The sumatriptan works fantastic but I’m getting 2 attacks per day on average. The script only gave me 6 doses and cannot refill for 25 days. Why is this? And is there a way around it. Thank you for any input.   -Matt 

[spiny]

It is hard on your body. It might cause bigger issues down the line. Many reasons to limit the drug. Triptans can do really bad things to your heart. So, too many, is too many. 

There are better ways to treat your head actually. Please type 'D3 ' into the search bar at the top of the page. A really great way to get relief without sacrificing your body. It is just vitamins and very safe. Good for you stuff. Triptans are not good for you. That is why they are limited. 

Read the 'New Users' Banner at the top of the page for other info. 

Welcome and we are here to help!! <3 Read, read, read and ask questions. We re here to help you navigate this disease. 

[jon019]

...hi Mezzo...welcome....

....most find that 2-3 mg of suma is plenty to abort a hit so if you hack the stat dose you can double or triple the effectives doses and avoid the HAMMER that is 6 mg...not sure if available anymore but there used to be vials where you could draw up and inject with insulin needles the amt you need...ask your pharmacist if these can be obtained...

....at one time i obtained 18 doses/mo by way of a letter doc wrote to insurance company...called a "letter of medical necessity" ...the phrase "intractable cluster headaches" was advised by an insurance broker as 'magic words".....helpful to point out to doc that ins company is practicing w/o license and changing his/her script!!!

....same neuro once prescribed suma and zomig nasal spray (5 mg) at same time...she knew the games ins companies play and was not happy about i(ins co approved w/o question)....be warned tho...VERY IMPORTANT not to mix different triptans within 24 hr period...

...i found the zomig ns to be far less harsh than suma, few if any side effects, no rebounds, and longer lasting...only one way for you to find out if true for you...

...with OXYGEN caffeine and possibly D3 there were far fewer times i needed a triptan....so was only a last resort option...spiny is absolutely right....should be avoided if possible...

best

jonathan

Edited November 3, 2020 by jon019

[Pebblesthecorgi]

There is a lot of misinformation about cardiotoxicity and triptan.  Most of it is exaggerated.  Adverse cardiac effects are largely single case reports and advise caution when using.  Individuals who have had documented cardiac damage largely had pre existing predisposition.   Of course there are always exceptions but the very vast majority of folks can use triptan with relatively safety.

 

The rationing of triptan comes from several different directions.  First it is primarily a drug for migraine headache.  Providers feel if you are needing to inject more than 4-6 a month you should be on a preventative med instead.  There are a fair number of effective preventative meds for migraines.  Cluster headaches aren’t migraines and because of the cyclic nature and intensity sq injection is the only route aborting the headache is effective.  When you need it and choose to use it much should be available (hoard off cycle).  

Triptan also can cause horrific rebound headaches so judicious use is warranted.  

Triptan ma expend cycles making remission further down the path.  

You can get triptan in multi unit bottles and inject smaller doses 2-3 mg with an insulin or tb syringe.  This gives you a lot of flexibility.  

Triptan likely interfere with busting so a drug holiday is required prior to bust.

 

Oxygen should be your go to abort if possible, reserve triptan injections for fails.

Experiment with D3 see if it works for you

Triptans are a tool, not the devil but sometimes its hard to tell the difference sometimes imes and like all things self education leads to a rational treatment approach for you.

[CHfather]

Splitting injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Some info that might be helpful since you're recently diagnosed: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[Tony Only]

You don't need even a single dose of triptan when you have oxygen + other abortatives and a good preventative. But if recently diagnosed it might seem hard to get there and new clusterheads usually are the ones who fall on suma path (and many are unable to get out). I personally think it's magnificient that they are limited nowadays, remembering those days they were not and having overused them myself to the extreme. Lots of friends from that era are either dead or live with a damaged heart. They can lengthen cycles, increase frequency and intensity of attacks. Many still keep on using them when they have realized this; either because of fear or inability to get oxygen or some other reason. I would say use them in an absolute emergency only, and hope we get rid of them or manage to invent and manufacture a cluster and heart-safe triptan one day. The second level of hell you may end up to overusing them regularly is something beyond even cluster-imagination. 

[preaching stops]

Edited November 3, 2020 by Tony Only

[Cast Iron]

In that respect I've made my way to the second level of hell, or possibly even further. My breakfast, lunch and dinner is consisting of verapamil, fravotriptan, sandomigran, paracoff, D3 regime to keep the Ch at bay. Agree that one should look for a good preventive other than the triptans.

But you know, the beast behaves differently in every person, with different methods trying to keep it at bay.

I am in a bad cycle now for 4 months, last month I've had 170 attacks, night and day. As another preventive I've had the GON injection (liquid prednisolone into the great occipital nerve), with no effect. The O2 will only take care of the smaller attacks, prednison will reduce the number and severity, but cant take them away fully.

The number and severity is progressing rapidly, I have 10 attacks a day varying from kip 3-8, cant do the busting, last week started on emgality -have to wait for the first effects, if any as last year i had aimovig with no effect- so my last resort is the combination of O2 and 3-5 sumatriptans a day to not escalate it further into a kip 9/10.

I know the hammer and rebounds are super big, but there is just no other way.

Alex

occipitnerve

 

[FunTimes]

@Cast Iron, I was in the same boat at one point a few years ago. I finally figured I had nothing to lose and I spend a weekend locked in my room with no triptans and beat the shit out of myself all weekend. It was hell but I think it helped me in the long run. I now bust, do the D3 and have oxygen that I hit as soon as I feel that lovely sensation of a cluster coming on. I also always have a 5hr energy drink in my pocket to help the oxygen along and take a low dose of Verapamil. I was taking 2 and 3 triptan injectables a day and eating sumatriptan pills in between. I truly feel that all that was making my life worse.  Triptans do work and I feel they have a time and place to be used very effectively but I was clearly causing more headaches by using them that often. It is not easy to do and like anything else that makes you feel better you just want to hit it just this one time but if you can hold off for just a few days I think you will start to feel better. I am chronic so I do not go any length of time pain free but I am now down to about 2 clusters a day on average. I do get the occasional pain free day but not very often.   I know it all just sucks but with this site you will be able to find a way to make it to the other side of this cycle you are now stuck in.