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20yearslater

Sumatriptan where has this been all my life

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Hi all, 

Happy new year!

I am very new to this site. But very thankful to have found it. I was recently diagnosed with CH last year after undergoing my 4th nerve ablation (burning the nerve in the back of my head). Multiple doctors have thought it was pinched nerve due to multiple football head injuries. Anyways needless to say after 20 years of excruciating headaches I have arrived at CH.

 

I just started my CH cycle about 2 weeks ago where I didnt take any meds once one hit as I was travelling on vacation. They came at 4am and 11am, with the morning ones lasting 2-3 hrs or until I passed out and the 11am ones being sporadic in length (30 mins to in and out for 5 hours, but mostly 1-2 hrs). This was the first time I didnt take any drugs, typically i would take morphine and other narcotics like it was like candy to try and kill the pain but have now realised there is a good chance these never worked it was just the CH running its course. To say the least it was extremely hard to be "sober" and go through this.

Once I got home I used Sumatriptan ( 6mg cartridge) at 4 am for my typical headache it was done in 5 mins. I started crying from joy. 

That day I didnt get one till 6pm, I waited a bit to see if it was really going to come and when it did I did another injection... bam it was gone.  I started messaging my family like I won the lottery. 

The next day (today) the pattern changed, got a headache at 2am, 8am, 2pm, and one that seems to be coming now. I used a shot for the last 3 but worried about how this pattern is developing. 

I am 2 weeks into my cycle and from what I can remember they definitely ramp up in frequency so I dont know if this is just my cycle or because I am using this drug. Also, as I mentioned before I have typically been extremely doped up throughout my cycle so my memory isn't the greatest. 

I would appreciate peoples thoughts on this and whether or not I should be concerned. I also will continue to look through the forum to see if someone has had a similar experience and how they handled it. 

Thank you for your time.

 

Sorry realise this is under the wrong topic... dont know how to move it sorry

 

 

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Welcome 20yYL! 

Triptans can be a life saver. They can be really bad too. Normally, you do not take more than 2 6mg in 24 hours! 

You can split the dose though. Type something like 'splitting triptans' into the search bar and you will get several threads to look at. 

Where is your pure O2 from a tank? That should be your first line of defense! No bad side effects and it works quickly. Like triptans, it does not prevent the next one. But O2 won't destroy your body either and that is a definite plus! And narcotics really don't help with CH! You can take a lot and it will not help most, if not any patient! 

I was having a scope, under sedation and OUT when I got a hit. They had to give general to finish the scope! Talk about shocked docs, they were! They did have the O2 for me and I killed it as soon as I woke up. 

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Thank you for the replies. I will read up on the threads provided above.

 I do have O2 and I will give that a try. Part of the issue is my work environment , culturally speaking, doesn't really support bringing a small O2 tank. Nor does it really care if I get a CH in the middle of the day. 

Question, I am seeing on this forum the word "shadow" when people say this are they referring to the constant nagging (or almost light throbbing of a headache that could come)?

I am going to look at busting but would like to do more research so will do it for my next cycle. Just need to survive this one right now.

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@20yearslater welcome! This is my first time with Ch as well (started in July). I had very dull headaches for 3 months at a time and then they went away for 3 years! And then BAM. Back again. So I am thinking they are getting worse over time. I would start the d3 regimen! It’s a lot to type out but search for the info in the bar and you’ll find all the info you need. Many people have success with that. I have avoided sumatriptans because I’ve heard they can make cycles longer and more intense. That might be why your headaches are coming more frequently....or the cycle is just ramping up. It’s hard to say. Typically people with O2 use that as a first line of defense and the sumatriptans are used when O2 is not available ( in your case bring them to work!) I hope you find the forum helpful. I’ve gotten more help here than from most doctors I’ve seen (5 neurologists at this point...scary how ignorant they all were) good luck! 

Kat 

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Triptans are a blessing and a curse. I use them when on vacations so that I do not ruin our trip. The problem is taking them seems to keep you in a cycle, like your brain needs them. I have to get off them cold turkey which is a real headache lol!  

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You discovered the magic of pharmaceutical companies! Triptans work for migraines, but still haven't talked to anyone where a triptan works over an extended time, say ten years. The one's I know who have taken them a long time are psych patients. They didn't start out as psych patients and every one had been on long term triptans. So, you can keep wondering if they work and risk being racked by a series of kip 9's or just use what is suggested by the longtime sufferers who have beaten the beast for up to 20 years. Psychedelics work, we've proved that, yet people are afraid that they'll get brain damage! Smashing your head causes brain damage, psychedelics are fun. Sub hallucinogenic doses may help for awhile, but I had to do a 1mg dose to stop them. I'm celebrating 20 years HA free. Even though I did psychedelics when young, I never detoxed  correctly and still took 14 years to get it right. It's an experiment, but has worked for me and at least 92 others. Sometimes you just have to help others. It's actually really cool to take an 18 yo who knows nothing but pain and cure him in 8 hrs. Watching a kid's parents who can't do anything about it is heartbreaking. It's imperative that we pay more attention to teens with clusters as they are more likely to commit suicide. Handing the now confident adult back to their parents is also cool. We have companies in California that will come to your house and dose you so there's no excuse to see a dr for poison. Cost me $10 for 20 years HA free. How much are triptans now? Not that cheap or effective. Peace 

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Thank you for your post. Honestly I am in a really weird place right now. I am using the Triptan 2x a day and feel like crap however it's way better than having a ch. I tried O2 and didnt really work for me. I will try again tonight given I dont have to go to work in the morning. Bringing o2 to work just cant happen I work in a very competitive hostile environment that wouldnt really take kindly to me pulling out a mask while I work... I am going to try the d3 regime and when I am back in canada I will find the ingredients I need to do a proper busting because it does look promising. I pretty much live with a shadow 24hrs 365 days a year which has led to me abusing alcohol because it gives me some relief but I am stopping that now and I am just in constant pain although it's not necessarily a cluster the shadow I get is more than enough to make me exhausted and depressed. Hopefully the D3 regime helps with that. 

Anyways thank you for sharing. This site has been quite the blessing. Thank you 

 

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