Finally made it here,
First of all. thank You to Finnish co-sufferers who have helped me to get sorted and quided to CH.com and clusterbusters sites.

My hell broke in midsummer. My cycle had been building up the whole spring but serious night attacks started around midsummer. Went through all this ER, madhouse, "you have a little bit headache", etc bs i think we all know it. Heres the story in short:

Jyly 2012. 1st ER visit: Was left with triptans. This resulted in 8-12 kip 9-10 attacks every day--> suicidal.

Private neurologist: diagnosed CH (finally, had a name on this shit)

2nd ER visit: mad house, consultation to neurologist. Prednisolone taper starting 80, verpamil

August 2012: Medication helps but i realise that i have just bought time to study all this since it will come back after pred. Found Finnish support, saves my life.

Now: I have decided to go prescription meds free. Current medications:  tapering pred (15mg left), tapering lamictal (50mg left), verpamil 4x80 (not tapered yet, might need help with this later), ketipinor 50mg. Have been on medications due to bipo diagnosis before CH so i am really sick of these drugs which do not work.

Current CH treatment: Oxygen (demand system, not sure yet if i can use it right, but already know this stuff works!), melatonin, bright light in morning, vitamin therapy. Peer support, knowledge digging.

At this point i get attacks only a couple every second day, they are 6-7, and i think several of these are due to med tapering. I hope i can forse this episode to remission with o2 and herbal options after getting off presc.meds.

Been reading a lot here already, THANK YOU! I hope i will be able to contribute as well :) Looking forward to "meeting" you all.

Br,
Kristina

Hello Kristina, and welcome. I am very sorry you need to be on sites like this, but very glad you found the courage to explore on your own. I look forward to your future posts. This can be a maddening condition and a painful one. Just as you seem to have a handle on the beast, it morphs, slips its leash, and turns on you viciously. Anyway, I pray you will find relief soon and often. Curious about this, though:


Quote:

I have decided to go prescription meds free.

Why? I'm not arguing with your decision, it's just that you give no reason for wanting to go this most difficult route. Blessings. lance

Hi and thanks for reply.
Decision to go med free comes back from my history. I have an underlying bipolar disorder and during 12 years i have been on a number of heavy meds. I have also had migraines my whole life and therefore have been eating huge amounts of pain killers.  Now this CH started at midsummer and i realised that i am eating huge amounts of different pills and and loads of painkillers yet have deppression, etc and CH on top of it.

But the philosophy under my decision is that i would like to "spare" my brain and on the other hand learn to know how my clusters behave. With this medication coctail it is impossible to say what causes what and which med helps. However, based on the really valuable information i have got from you guys here i am rethinking with verpamil.

Now i have lamictal almost discontinued, the taper has been HORRIBLE. Lamictal headaches came every time when lowering dose. Funny is that lamictal headache is on left side and CH always on right side. I was on 300 mg lamictal, one doctor even suggested that lamictal could have provoked the CH to become so bad. Pred is now 10, 1 week to go. Then i have ketipinor, that i will discontinue in 2 weeks.

The question mark is verpamil. I do think it is holding my clusters. I actually think i dont have the guts to discontinue it...until ch hopefully goes to remission. Only problem i do not understand is that my neurologist wants me to stop verpamil and go on depakote. He says it is because i have bipo and i have previously been on depakote and it has helped against my migraines.

Well, i think i will stay on verpamil until the episode starts to calm down and will NOT start depakote. This means i have verpamil, melatonin and oxygen. I know, should see a better doc. But this seems impossible here. I saw a private doc as well, he was good but it is the money thing, cant afford to go so often.

One question about oxygen: how should it be correctly hyperventilated? I just try to get as much as possible as quickly as i can out of the tank but is there a system to do it?

Again, thank you for existing and hoping pain free days for all of You!

As you have already stated,  pain killers and narcotics will not help with CH.  There is so much risk of dependance with them also.

Unless I missed it, can you ask your phyician to prescribe pure oxygen in lieu of other drugs.  If I can get on my 02 at the first twinge of a CH coming on, I can abort in under 10 mins. 

Linda

Hi Linda,

I finally got my 02 one week ago. It has already saved my life!

i feel that i will manage this with oxygen since it is the only thing so far that has helped. Cant really believe it..finally something that takes the pain away. To be honest i doubted a lot :D 

You say you have a demand valve system? That is the best. As far as getting better at using it... it would all be technique with a demand system.
When hyperventilating it is common for people to take short fast breaths. Concentrating on exhaling all the way and breathing deep will help. Like you said, just get as much in there as possible.
Hope this helps.

I have also found, as have many of us, that chugging an energy drink (taurine + caffeine, like Red Bull or Monster) then hitting the O2 helps with the abort and keeping the next hit at bay. So many techniques to using O2...I agree with ttnolan, get as much O2 into your system as efficiently as you can, as quickly as you can. That tingle you feel is what you're aiming for and signals the beginning of hyperventilation. blessings. lance

p.s. do rethink verapamil. it is neither a narcotic nor a head drug. It probably works neurogenically and not vascularly, but it does work. I take 640mg/day.

Consulted doc regarding verpamil (thanks Lance). Got numbness in legs and chest pains which have increased in couple of days. EKG was fine but i have very low blood pressure. The instruction was to come off by reducing 1 x 80 per week. I did not tell him that i will not start depakote so this leaves me with vitamin therapy, melatonin and oxygen.

This episode has now lasted nearly 3 months so i really hope i am in the end of cycle. But until then i need to believe in the power of oxygen (and red bull)

xxx,
Kristina

Since you seem determined to get off as much pharma as possible... I have to add this, check out clusterbusters.com

Yep,

Went down from 320mg verapamil to 240 2 days ago and ch went worse. Chest pain went away tho. I really feel that i have to choose between heart failure and ch. To be honest, at this moment i prefer heart failure after a horrible night. Anyway, starting to realise verapamil is my stepping stone. Shit.

ttnolan: thanks, i would definately like to go with busting. Have to do reading and aim for that 5 med free days. Seems like impossible with this verpamil. It would be easier to drop the med and suffer for five days but the tapering off...done tapering now 6 weeks with different meds and feel exhausted, and now have to taper the only drug that helps ch. Sorry a bit messy text. I need to go back to my 02..

Thanks for existing.

Have to admit, i panicked, went back on 320 verap. Strange that 1 80mg pill reduction took the clusters back. CH night was so bad i rather take chest pain. I quess i have to try tapering slower. Have to call doc on monday. I understood that some people have busted while still on verap. Dont know..a bit confused now. Anyway i have not got the courage to go down with verap now. Wishing a beautiful day to all of you!

I'm not certain you have to stop verapamil to bust. Ask them. They are helpful and responsive, as well as knowledgable. Sorry for your bad night. blessings. lance