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Newbie to group - advice!


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Good Morning Everyone!

        My name is Erica and I found your site through google searching about cluster headaches. Just a little background on me - I was diagnosed with acute episodic cluster headaches at the age of 14 (I'm 27 now). In the beginning, getting a diagnosis was extremely difficult. I think God for my Mom who was my advocate because she knew something wasn't righting did so much research. I had the classic symptoms- SUDDEN onset of headache at night (sometimes 30min-1hr after falling asleep), behind my left eye - which then would become puffy, teary, and red. I felt like someone was pulling my eye out-often times unbearable. My headaches last from 15min-1hr 30min. After a month or so, they would disappear for almost 10months-to a year. My Dad also had acute episodic clusters from the age of 18-early 30s. He hasn't had one since (knock on wood).

Unfortunately, I have a cardiac history - I have a pacemaker/ defibrillator for Vtach (diagnosed at 12 while running track- had cardiac arrest and survived!) From a heart standpoint - I am great. But it is an issue for me while taking the triptans. For the heart - I only take Nadolol which is a beta blocker to keep my heart rate down.

I recently started Emgality at the onset of my cluster headaches and it seemed to decrease the severity of the headaches and shorten the duration. However, I still get those unbearable headaches here and there. I was given the sublingual Rizatriptan which actually works like a charm - but obviously need to be super cautious due to the cardiac warnings. I take Excedrin because of the caffeine and it'll help for the cluster headaches that aren't so severe. I also will take this to give myself a break from the triptans. I recently was introduced to a medication called "Nurtec" - I liked it because there aren't any cardiac side effects but wanted people's opinion. I love that it's sublingual, too. 

When a cluster period starts - I will avoid alcohol like the plague haha, anything with MSG in it, running (for some reason - it triggers them for me), use a mouth guard because I clench my teeth at night due to the stress of the HA's, and take Benadryl here and there because I am sleep deprived by week 3 of clusters. I have gone as far as using "Sinus Plumber" during the onset of a HA - which I didn't see much of a difference besides my nose feeling like it was being burned off. I also started multi vitamin that I take every day. Almost all my headaches are at night time. I usually will get 1-4 a day depending on where I am in the cycle. My cycle lasts for a little over a month and then disappear. 

I wanted to see if anyone had any additional advice for me. Is there something else I can be trying? I appreciate any suggestions and so happy I found this site. I have already found some useful information! :) 

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Welcome, Erica.  As it is said here, glad you are here but sorry you have to be.

First, foremost, and above all else -- OXYGEN is what you want for stopping attacks.  It's the life-changer.  You will have a lot less need for other abortive meds (such as triptans or Nurtec) when you use O2. 

Then there's the vitamin D3 regimen -- the best, safest preventive.

An energy shot (such as 5-Hour Energy) or drink (such as Red Bull) at the first sign of an attack can reduce its severity or even sometimes abort the attack. There are reasons why the shots are preferred (more caffeine, easier to get down fast).  Don't know how this fits with your heart situation.

You can read about all of those things, and some more, in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

You might want to consider busting.  Click on the "New Users..." wording in the blue banner at the top of each page for busting basics.  The same information you would get when you click there is at the very end of the post I linked you to.



Edited by CHfather
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...good morning Erica...welcome!

...yeah, thanks Ma for sure...diagnosing CH in an adult is a crap shoot..it would seem to be even moreso for a child....

....you don't mention OXYGEN.....considered the best abortive and NO side effects, especially heart wise. any experience there? wouldn't need the other meds....

...careful with the Excedrin....some folks find it helps with shadows (naproxen does for me) but is useless for a regular hit, nasty potential stomach side effects and additive to any blood thinners you may be on. methinks the caffeine is the key .....




edited to add...i see i posted same time as CHf...unintentionally redundant....but obviously i agree B)

Edited by jon019
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Welcome! Cluster headaches seem to be more rare in young women, so I'm not glad that you're here exactly but I'm glad we aren't alone! I had my first at 20 and am 36 now. 

I have not tried as many of the medications you mention - my last doctor prescribed me sumatriptan in tablet form which didn't do anything for me except propel me into a medication overuse cluster episode. I will say that 5 hr energy is a great abortive for me, and that I have had a lot of success with a procedure called Sphenocath, which is an SPG nerve block where they put a lidocaine solution on a nerve cluster in your head. I had it done in 2019 and didn't have another episode until this year. I did it again this week and am down to just shadow pain, I think I'll probably go back for another one in a couple weeks to see. The Sphenocath is a lot more commonly used for regular migraines, the doctor who did mine said it's really 50/50 with cluster patients, but as we know here just about anything is worth a shot. 

Good luck!

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