Hi all,  back on the board after a 1 year remission.  Last year's cycle had me going to the ER and I finally got to see a specialist.  He prescribed Zomig Spray and Imitrex Injections but of course cycle stopped and I did not need any until a few weeks ago when it started again.  Am now getting somewhat addicted to the Imitrex and a bit worried about long term effects of that

Another question I had is: do you always feel completely exhausted after an attack.  All the attacks I have, no matter if I abort with Imitrex or just suffer through smaller attacks, I end up completely tired and exhausted...

thanks
Patrick

Yes, yes, and yes! I feel like a zombie, can't think straight and very emotional! Where are you located? Can you get O2? It helped me immensely and I didn't feel as wiped out the next day. It must be the pain we endure and of course the broken sleep.

I am on the D3 regimen and am basically pain free except for a shadow every couple of days.

Hopefully someone will chime in with some ideas.

Until then...one day at at time!
Judy

Patrick-Ottawa wrote on Dec 19^th, 2013 at 1:04pm:

Hi all,  back on the board after a 1 year remission.  Last year's cycle had me going to the ER and I finally got to see a specialist.  He prescribed Zomig Spray and Imitrex Injections but of course cycle stopped and I did not need any until a few weeks ago when it started again.  Am now getting somewhat addicted to the Imitrex and a bit worried about long term effects of that Another question I had is: do you always feel completely exhausted after an attack.  All the attacks I have, no matter if I abort with Imitrex or just suffer through smaller attacks, I end up completely tired and exhausted... thanks Patrick

fellow Ontarian...eh
Imitrex is a love hate relationship for me
I get really sick about 24 hours. Exhaustion is immediate. Sme days worse than others. My family knows if i take it...that the next 24 hours are hell for me with rebounds, feeling bloating,sick,nausea,wiped out and eating is an effort. I empathise.

I found that with the really nasty CHs, especially before I got O2, that an energy drink or something like a can of coke would help a lot with avoiding (or minimising) the post attack exhaustion.

That's not much of an arsenal to battle CH with, are you working with a headache specialist doc yet?  We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will show you how to get set up with welding oxygen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers. There still isn't any study that shows the imitrex is bad for you long term, but many here swear it extends their cycles.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Definitely can relate to exhaustion. The worst ones leave you almost shivering because you are covered in sweat, with usually a bit of nausea or a lingering headache that sticks around for the rest of the day. Only good thing about night attacks is that you can hopefully get some sleep afterwards, but for some with multiple attacks the exhaustion is probably constant while they are in cycle.

I echo the others when they say that post attack exhaustion is path of the course.... Attacks seem to use all of your energy to try and fight it (hard not to sometimes) but this then leaves you wrecked and you want to have a nap to recover. I'm on board with you ... Dave

This thread gives me yet another opportunity to bang my favorite drum on CHs: they have several seizure like qualities, including postictal (post seizure) characteristics. That's just part of the similarity, and I wonder if it wouldn't be a fruitful avenue of research. Not that we know all that much about seizures, either. blessings. lance

grats on the 1 year mission! I wish I could get that.  I did try the zomig at the ER and it worked great!! but cost more than $100 a pill and I needed 2 at a time.  Then months later I had zomig again and it had little effect.  I do get a strange exhausted feeling after a bad headache ends.

Mike-

By the time you actually get to the ER and get treated, it's very likely the headache is going to start going away on its own. Put that money into some effective prevent medication!

When I'm in a cycle, it's attack - break - attack - break -attack -break... lasting over about a 6-8 hour period in total. When it's done, I'm absolutely spent.  I don't know if sleep or "pass out" is what I do for the next part of the day, but yes I can sympathize.

Rather than get addicted to the medicines, that for me have don't work, I find the oxygen the best, for almost 20 years.  because there are so many attacks, as many as 10 a night,and I cannot take medicine every hour on teh hour.  The only problem is  I am in soo much pain , screaming and crying that it takes awhile before I can calm down enough to inhale.  Once I can inhale properly. after about 15 minutes I am clear until the next one, but yes it is very exhausting. 
Rumeke wrote on Dec 19^th, 2013 at 1:26pm:

Yes, yes, and yes! I feel like a zombie, can't think straight and very emotional! Where are you located? Can you get O2? It helped me immensely and I didn't feel as wiped out the next day. It must be the pain we endure and of course the broken sleep. I am on the D3 regimen and am basically pain free except for a shadow every couple of days. Hopefully someone will chime in with some ideas. Until then...one day at at time! Judy

Yes, me too. After the first few days in cycle I'm completely done in. Luckily for me my husband is a star and when I'm ill he knows it's best to just leave me alone, but he does do all the cooking, house work and shopping for me and he sleeps in the spare room to give me as much peace as possible. When a cycle ends it takes me nearly 2 weeks to pull myself together.
Maz