So here i go again back to back clusters starting last night. I take Batch's D3 regiemn 600mg Lithium, 80mg Verapamil ( i know low but only because i have BP issues ) but i will be increasing 40mg next week, 150mg Topamax, i can hardly type right now. i am at a k-8 have taken a relpax did nothing, tried oxygen, not helping, took 2 dilaudid still nothing. I feel like just giving up.

clusterbusters.clusterheadaches.com

Last time I'm going to offer this advice. I hope you find relief.

Im already a member of the board. I dont know what you want me to read on there.

Maybe you've read it all. Now you need to do.

Try this:

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

It's NOT mainstream medicine.

How high do you have your oxygen set, and how long do you use it for?  I am not a pro at using this yet to abort mine because I just started last cycle, but I found that it didn't abort mine all of the time but did knock the pain down to bearable.  Just keep trying and don't give up on it yet. 

The only thing from experience I can say is for the first 10 years of suffering cluster headaches the only thing that got me through was Fioricet.  It stopped working for me about 5 years ago though.  I don't know if you ever tried it, but it might be worth asking your doctor about.  It works very fast because it dissolves very fast.  You just need to take it at the first sign of a headache.  Anyway, those are my 2 cents.

Hope you feel better soon.  Will pray for you. 

I'm sure your doctor has put you on the Prednisone tapper off thing.....right?  So sorry to hear your in pain!!   

I appreciate it guys I will read the clusterbuster site tomorrow when I go back to work. I had to leave :(. I have tried foricet. Does nothing for me. Right now I'm okay no CH but I still have shadows. I have done the prednisone taper. I think since I'm chronic it may make it worse because of the withdraw headache afterward. I see my neurologist on Monday so hopefully we can try something new.

lydia nichole wrote on Jul 19^th, 2012 at 12:46pm:

I appreciate it guys I will read the clusterbuster site tomorrow when I go back to work. I had to leave :(. I have tried foricet. Does nothing for me. Right now I'm okay no CH but I still have shadows. I have done the prednisone taper. I think since I'm chronic it may make it worse because of the withdraw headache afterward. I see my neurologist on Monday so hopefully we can try something new.

Your username at clusterbusters might be?

        Potter

Please understand something before you go to your doctor on Monday. The Clusterbuster method is not something he or she will prescribe. It is the judicious use of hallucinogens.

I couldn't help but notice that your dosages of the medicines you have taken or are on are low.  I took 900mg of lithium and found relief there.  Alot of people try up towards 960mg of verapamil.  Also I was told by a ha specialist that 200mg of topamax is where it is borderline theraputic.  I tried up towards 600mg.  So provided you can stand the side effects of these medicines I would urge you to talk to your dr. about higher doses.  On a side note try oxygen at about 15 lpm you should start to see great results with no side effects.  See the tab on oxygen info on the left side of the screen.  Good luck.

If you still have the oxygen concentrator, even with a proper mask with a bag on it, this does not work for CH. It does NOT put out %100 O2. We need the tanks. That's WHY the oxygen (O2) isn't working.

Those of us that say pain meds don't work for CH is because we've done that. For me they are a trigger. I took Tylenol #4 for 3 months every 4 hours, even setting my alarm for 4 hours at night. I had some of the worst attacks I can remember during that time.

For the Dilaudid to come close to helping, you would have to take it every 4-6 hrs around the clock. In time you will need more to do the same thing. Then at some point you WILL become a basket case.

Please get a decent O2 setup before you say it isn't working. All we're trying to do is help you find some relief.

Don

Billie wrote on Jul 19^th, 2012 at 10:59am:

How high do you have your oxygen set, and how long do you use it for?  I am not a pro at using this yet to abort mine because I just started last cycle, but I found that it didn't abort mine all of the time but did knock the pain down to bearable.  Just keep trying and don't give up on it yet.

We are talking about an O2 tank with 100% pure oxygen, with a regulator that is at the very least 15lpm, with a nonrebreather mask attached? Flow should be however much you need to fill that 3 liter reservoir bag. If you're in pain and sucking hard, you may need up to 25lpm just to keep a fast and deep breathing pattern going. It's possible such a setup won't abort your hits, but it would be unusual. Blessings. lance

i have a tank now with 25lpm.

i also just started the Verapamil and being that i have borderline low BP the are Monitoring me on it. I'm having a hard time dealing with the side effects of the Topamax and Litium.

Brew wrote on Jul 19^th, 2012 at 1:49pm:

Please understand something before you go to your doctor on Monday. The Clusterbuster method is not something he or she will prescribe. It is the judicious use of hallucinogens.

i will look into it. Thanks Brew.

I only use the Dilaudid when absolutely necessary ( they dont do much but make but do bring me my pain level down enough to where i can fall asleep and try and sleep threw it ) but most of the time unless injected several times in ER it doesn't do too much. Triptains cause me to become Very sick Nauseous, Vomiting ( even with 8mg of Zofran ) and they cause me to panic and have major anxiety. I still use them. but i still get hit some days with multiple K-10 over 1 1/2 long and as we all no you can only take so many triptains in 24 hours and i personally already throw up so bad from the pain of the headache that i dehydrate myself that the triptains make it allot worse. I just wish these Prevents would work. I'm hoping after my lab results on Monday i will get the go ahead to increase my meds. I have no quality of life right now anyways.

lydia nichole wrote on Jul 20^th, 2012 at 9:55am:

i will look into it. Thanks Brew.

If nothing else is working, please do.

I suffered through almost 20 years of this crap (5 or 6 of them being chronic) before I discovered it. With only one hiccup in the past two and a half years, I have been virtually pain free.

PM me if you want more information.

Okay, Its just gonna be really hard for me to try something like that being I'm a single mom with 2 jobs. But my mom is supportive in any treatment i try regardless legal or not, she hates to see me go threw the pain and scares the shit out of her. She still cant believe that something that can put someone threw that much pain can not cause damage after so long. Like i said i'm young but Ive been having CH since 11 But believe i was Episodic then. now Ive been chronic since i think 17 so like 6 almost 7 years of hell. Why did we have to get CH, Why couldn't we win the damn lottery.

Praying you find something that works. Imitrex doesn't work for me but DHE injections do. Not a Triptan but a strong vaso-constrictor. It also comes in an inhaler called Migranal. The shots are much cheaper than Imitrex. Migranal is not so cheap.

O2 breathing technique is critical, if we empty the bag before our inhale is done it causes anxiety and panic and this can cause the O2 to fail to abort. Standard NON-rebreather masks only have a 1 liter bag, this is easily emptied. The O2pti has a 3 liter bag and is made just for CH.

The longer we  wait to hit the O2 the less likely it will work. (higher Kip). Start the O2 as soon as an attack starts at 25LPM, breathe hard and as fast as you can, when the pain starts to leave you can turn the O2 down until the attack is gone. Hyperventilation is the fastest way to abort with O2. Give it your best.

Don

I haven't tried DHE I am going to talk to my doctor about it on Monday. I am is it harder on your stomach then triptains?

Doesn't bother my stomach. Please check my last post I added some O2 stuff. For me and some other folks the DHE lasts a lot longer than Imitrex, up to 24 hrs. Also is use DHE IM shots, intramuscular. They don't hurt for me. The inhaler is too slow to stop a hit but can help me sleep.

Don

Thank you. I will talk to my doctor and see what he thinks about the DHE. And thanks for the O2 advise. I do hyperventalate but after 10 mins my nausea gets the best of ne and I have to stop.

Forgot to say the DHE inhaler is too slow for me to stop a hit but will give me some sleep. Sorry so scattered. Does your mask have open holes on the side? If so you need to tape them shut. Open holes will let in outside air, not good.

I abort with O2 in less than 4 min @ 25LPM, with the O2pti.

Don

No it doesn't but my headaches go fro zero to 10 in no time. I think that's the problem

Quote:

Why did we have to get CH, Why couldn't we win the damn lottery.

I've met some of the finest people on the face of the earth right here on this board.

I have won the lottery.

So much easier to realize when you are not in pain. While I do agree with you Brew, Lydia isn't looking for friends right now. She wants the pain to stop. Later, when she finds relief through one post and try or another, that's when gratitude for those who share with us in the fellowship of pain will be realized. God bless. lance

Well brew you are def one of a kind lol. I only meant as in how rare the condition is and how rare it is to when the lottery. I agree i have meet some amazing, strong, brave people on here & i appreciate all of the advice i have got from you guys, thanks.

Just trying to lighten things up a bit.