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Blair

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I’ve been suffering for the past month or so from a particularly horrible cluster headache cycle and feel completely and utterly drained - emotionally, physically, and mentally. Feeling pretty alone and hopeless. 

I was diagnosed with episodic cluster headaches my sophomore year in college - little over five years ago - after I experienced a headache I thought would kill me. Ever since then, I have struggled with managing them. Typically once or twice a year I get a cycle, and it lasts for 3-6 weeks. This year, I had a cycle in January and again, most recently, for most of September and all of October. My cycles don’t seem to be linked to any season - I’ve gotten them at all times of the year, in all different places of the globe. 

The current cycle brings headaches at all times of day - when I sleep and sometimes randomly during the day, like earlier today. I’m on a lot of drugs now which leave me feeling lethargic, dizzy, tired, and sluggish - sumatriptan as needed (100mg pill), verapamil (x6), prednisone (a massive taper), depakote (x2). I also take CBD oil and some “preventatives” such as melatonin, vitamin b2, and magnesium, which I read could be helpful. I’ve also tried acupuncture and other “interventions” as well.


The verapamil appeared to work earlier in January, but it isn’t working now, despite an increase in dosage (I now take 6 pills a day vs 2). The sumatriptan can help me get through a night, usually, but I’m limited in how many I have which is a constant source of stress. It also seems to never work fast enough.. As for the other medications listed - Nothing else I take seems to work. Not as far as I can tell, anyways.

I’m struggling to deal with the pain. It’s impacting every aspect of my personal and professional life, and I don’t know what treatment I should go to next. Just would be grateful for a friend and some advice. 

-Blair 

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Welcome to the forum Blair, sorry you need us & glad you found us. You'll get a ton of support & suggestions here. Hang in there. A few nice things about cluster headaches... they don't kill us, they teach us the value of pain free time & we gain a greater level of understanding & compassion for people who live with pain.

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Thank you.. it’s comforting to know there are others out there who know what it’s like. If there are treatments or medications you’ve found successful that maybe I should try, I’d be grateful for your advice. I haven’t begun perusing the site yet, but hope to do so tomorrow. 

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Blair,  hang in there, this is the place for you. With all the meds you are taking no wonder you so tired.  I get it.  everyone is different but all the same.  I also take verap 240mg twice a day when a cycle comes,  and that zaps energy like crazy.  Please look through this board and fine the D3 Regimen.  That has helped a lot of us to where we are pain free in about ten days.  worth giving it a try.  Once it kicks in I can stop the verap and get on with my life.  Hope this helps and keep us posted.

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Thank you Chris. I’ll look for the D3 regimen. I’ve been on prednisone for about 2.5 weeks - 6 bills a day. I’ll take a look and chat with my neurologist. 
 

Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it. It sounds like it gives moderately faster relief, which would be a godsend. I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance. 

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Oxygen is much much faster than a Sumatriptan pill & will change your life!  If my doc was throwing all those meds against the wall to see which 'stuck' to control them... FIRED! If all of those combined aren't working for you, why do you take them?

Edited by Brain on fire

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Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it.

If your doc hasn't suggested/INSISTED the "standard of care/#1 abortive"...which is O2... time for a new doc....preferably a headache specialist....O2 has saved lives and sanity in clusterville....

It sounds like it gives moderately faster relief, which would be a godsend.

.....how's 5-10 mins 90% of the time for me.....without ANY of those nasty side effects you mention...relatively inexpensive.... easy to use...way more portable than non clusterheads will tell you...can be obtainable by self pay if the insurance won't cover....from welding supply shop if not..........

I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance. 

...a "typical" protocol would be  prednisone to break a cycle while the prevent kicks in (10-14 days)...doubling up with two preventives (Verap and Depo) is unusual and I would say lazy...but then I do not know your med history so there could be valid reasons for that (he says doubtfully)....

.....what is the verap dose (6 x 80 mg = 480?).....that would be a recognized 'sweet spot" amount...many require much higher (I used over 1000 mg/dy in hi cycle)....if you ever figure a pattern try timing the doses just prior to expected hits...

...if ya gonna use a triptan you'll want injectable or nasal (i use Zomig nasal spray 5 mg) as a last line of defense when all else fails...in my case, the Zomig has few, if any, side effects, no rebounds, and a long half life compared to sumatriptan....pills are worthless as an abortive and require exquisite timing to be at all useful as a prevent....

...you are in the right place to learn about busting.....

....the D3 regimen could make all of this moot...do it now...it's good for ya anyway....

best

jonathan

sorry to step on Bof post...typed this before saw that.... totally agree........

Edited by jon019

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...oh...dang...forgot to mention energy drinks.....minimum 100 mg caffeine/1000 mg taurine at first sign of hit or on the way to O2 tank...great for shadows (small hits) and aborts for some folks...made O2 better for me....

Edited by jon019

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Apologies if I seemed harsh. I just get really pissed when I see no oxygen, a boatload of meds with each of their own added risks & little to no relief. A decent doc doesn't sit & watch ya suffer. No apology necessarily @jon019 your post re caffeine just popped up, good catch.

Edited by Brain on fire

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5 hours ago, Brain on fire said:

 they teach us the value of pain free time & we gain a greater level of understanding & compassion for people who live with pain.

I couldn’t agree more, if there is one thing cluster headaches has taught me, it’s to make the most of every moment you have and to not waste time, life is short enough as it is for people without cluster headaches, it’s damn well even shorter when you’re a ch’r, read a quote that said “life happens between cycles” hit me hard

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I posted a bit in Research Thread. It is two years old, but it is a lot more up to date than your Neuro! 

The Dr. McGenney is a member here. I would print it out, take it to that 'doc' and let him read it while you watch!!! The guy is killing you slowly with a ton of meds like that and no O2!!! He needs to get it together and know the proper way to treat CH today. O2 is the #1 abortive, triptans are there too, but in injection form. Or the nasal spray if shots can't be handled by the patient. Verap is the main preventative, and Pred is used in a short burst til the Verap kicks in. This is all stated in Ch treatment protocols!!

If it is not working, dump it! Some have to be tapered, so do it with care if you decide to stop taking them. Is the doc doing EEG checks when your dosage was upped on the Verap? That is a hefty dose. What is your blood pressure now? 

Please read that piece and keep reading and asking questions!

ATB

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15 hours ago, Dana129 said:

I couldn’t agree more, if there is one thing cluster headaches has taught me, it’s to make the most of every moment you have and to not waste time, life is short enough as it is for people without cluster headaches, it’s damn well even shorter when you’re a ch’r, read a quote that said “life happens between cycles” hit me hard

Thank you for your post.  I do try and make the most of every moment too.

Question....what do you mean by “It’s damn well even shorter when you’re a ch’r”. Is our life span shorter because we get CH?

Thank you.

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9 hours ago, Seth said:

Question....what do you mean by “It’s damn well even shorter when you’re a ch’r”. Is our life span shorter because we get CH?

Haha, nothing to do with the life span, it’s more so the time CH takes away from us, for months at a time and years when you’re chronic, life is called to a halt when clusters return, you’re not living when you’re going through a cycle, hence the quote “life happens between cycles”

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9 hours ago, Dana129 said:

Haha, nothing to do with the life span, it’s more so the time CH takes away from us, for months at a time and years when you’re chronic, life is called to a halt when clusters return, you’re not living when you’re going through a cycle, hence the quote “life happens between cycles”

Right on....makes sense to me!!!!!   Thank you!!!

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Thanks everyone for the help. Yesterday was another tough day. Sorry for being absent. 
 

Spoke with my neurologist - he prescribed sumatriptan in a nasal form so I will try that for the first time. Only having 6 sprays a month makes me nervous. Do you recommend using just one spray per headache and using it on the side of the cluster? Or is it true I need to take 2 - one per nostril? 
 

Neurologist suggested I try O2 off amazon and, if it works, he can get a script from my insurance.. Does anyone have amazon recommendations? I also mentioned the D3 regimen.  Neurologist didn’t know anything about it but said it couldn’t hurt. I picked up everything, except boron and K2 which I couldn’t find, but am a little nervous. My blood pressure was low before the verapamil, and I take 6 a day (40 mg each). Was thinking I should chat with my primary care physician who I really like to make sure my “levels” are okay.. and I’m thinking a new neurologist is in order at this point.  

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44 minutes ago, Blair said:

Neurologist suggested I try O2 off amazon and, if it works, he can get a script from my insurance.. Does anyone have amazon recommendations?

You can't get O2 from amazon.

44 minutes ago, Blair said:

and I’m thinking a new neurologist is in order at this point.

That's seems true.  So sorry.  Although at least you didn't get triptan pills.  The spray will probably help you.  (Others will answer your questions about that.)

So tell him you got some oxygen from Amazon and it worked great and now you'd like that prescription.  Here is more or less what the prescription should say, since it's a good bet he has no idea how to write it: "Oxygen therapy for cluster headache: 15 liters per minute for 15 minutes with non-rebreather mask."

Have you looked at the suggestions here for getting by without O2.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Edited by CHfather

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On 10/18/2019 at 10:30 PM, Dana129 said:

I couldn’t agree more, if there is one thing cluster headaches has taught me, it’s to make the most of every moment you have and to not waste time, life is short enough as it is for people without cluster headaches, it’s damn well even shorter when you’re a ch’r, read a quote that said “life happens between cycles” hit me hard

I third that- and makes me have more grace for people moving slowing in front of me, taking an extra second to respond, or seeming distracted... Man, I am judgemental! This has been a reality check for sure.

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Started the D3 regiment this morning with the verapamil (40 mg x6) and Depakote (250 mg x2). I noticed that the fish oil was a little tough on my stomach, but I'll be better about eating more food. It's honestly hard to eat as much as I feel I need to consume to support this dosage of pills, vitamins, etc... Also working on finding a new neurologist - and more immediately - a script for O2. I bought a can of the boost oxygen from amazon which I imagine will do little, if anything.. But at this point I'm willing to try anything. I'll take your suggestion ChFather, regardless of its effectiveness. 

Thank you for the suggestion on other ways to get by without O2 - starting to incorporate those into the regiment. I am also identifying new triggers all the time. Perhaps the most consistent trigger - or perhaps more appropriately signal - for me has been extreme neck stiffness. When my neck begins to seize up, I know that a cluster is soon to follow. I also get ear pain, almost like a bad ear ache, when one is on the way. 

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Your not alone everyone on here truly understand how your feeling. I know this because I Am going through the exact same feelings and emotions your feeling right now. I can relate to the feeling of having family and friends be there for you, but not really be there for you. there are so few of us that suffer from (the beast) cluster headaches it’s hard to find someone that can truly relate to you. Well you hit the jackpot here everyone here is awesome and helpful and the advice and words they have to offer carry some weight to them because they are just like you. I find that for me caffeine helps stop the pain and ramp up in about 2-5 minutes, accompany that with a cold press ice pack and it makes the pain a lot more tolerable. 
Hang in there you can do it just take it one day at a time.

 

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