I have joined this site because I am so tired of explaining myself to people and they just don't understand. I need people in my life that understand.

I am 31 today and have had CH since I was 14. My husband is the only person in my life that has a clue since he has had to watch me go through these CH for 11 years. My father still to this day says, well maybe it is something you are eatting. I really makes me want to cry. I have been in a full blown episode now for a month and there hasn't been any sign of the remission. I only take shots and tomorrow i am going to have my dr. put me on verapamil. I have never tried this. I really need a dr. that understands as well but in a small town you have to take what there is. Wish me luck. My 2 year old needs his mommy back.

hello Amanda:
i can relate with you on many things, i have had ch for over 30 years turned chronic almost 7 years ago now and was properly and officialy diagnosed last year. my family denied it till just latley. i too live in a small town and have to travel 250 miles away to get to a neurologist with some specialty in ch. it was then things started to turn around. if you have a willing gp dr ask for a rx for o2 with 15lpm and a non re-breather mask. also get a bag of frozen peas most like the cold but some like heat. also get some energy drinks, i use monster coffee energy drinks and chug them at start of a hit..
on the verapamil try to get at least 360 mg a day  something like 120mg three times a day and most find the short acting better than the long acting tablets.
please read all the info on left and educate yourself. that is your  best weapon against the beast.
this is my humble opinion and dont forget to hug your supporter they mean everything to us suffer's

Hello Amanda,

Welcome to the best place you could be for CH information. You now find youself amongst your own kind. I have been episodic for the past 15 years, currently in cycle and it's the longest running cycle of them all.

Doctors have always been tough to come by, no matter where we live.
We are rare in the med. field, by their own admission, so hang in there and keep working at it. Maybe someone on the site is from your area and can help.

Please go to the left and click on Oxygen info. link. Make sure your doctor is familiar with this abort. method. I found out about 02 three years ago and the strides since then are impressive. Read, learn and do it properly. It is my first line abort and I rarely use Imitex anymore. Safe and low cost. I reccomend the Optimask linked to the site. Great product and makes the abort easier.

You will find what works for some of us may or may not work for you.
Nature of the beast. You'll hear of all the possibilites no matter what the question. Knowledge if power dealing with the beast.

You'll find the most amazing comfort and support within this site, and a wealth of information from sufferers as well as supporters. Have your husband check it out. My wife found this place four years ago and we learned a great deal. She joined then and I joined this cycle.. I am amazed  at the help and support I've gotten from these folks.

Tells us about your treatments ie: preventatives etc. I'm sure many of us have experience with them. Most of all read, learn, and ask questions.

Good luck with your current cycle, I know they suck. We're right here with you. We share your pain, and I mean that in all possible ways. You'll get through it, we always do.

Others will be along shortly, but till then welcome, we're not a bad bunch, just a little messed up in the head....... ;)

Baer

I agree the optimask is an awsome thing but gotta get the o2 script first if not dont worry there are other ways.

Hi Amanda,you have found the home of CH sufferers.

There is lots to read on the site so you can educate yourself. You will find that you will also be educating many others who don't understand CHs. Family and MDs included.

All the best Iddy

After so many years, why have you not tried Verapamil or another preventive? Was this your choide or has our doc never offered a trial?
=========
Suggest you print and give to your doc. This approach has become widely used.


Headache. 2004 Nov;44(10):1013-8.  

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

   Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

Welcome Amanda.

I'm a supporter and just wanted to give a little nudge to you and yours - maybe your husband would find it beneficial to meet us all.  There are plenty of us around here who do not suffer the pain directly, but suffer watching our loved ones battle this beast.  Please extend the invitation to him - he might feel less alone, too.

Bless you as you continue your search for relief and PF days.

Hi Amanda!

Welcome.  Read all that you can here.  Arm yourself with knowledge so that you can educate your doctor.  Hopefully he or she will be open to learning.

I have been an episodic sufferer since I was ten.  I am now 38.  Just try to remember that this WILL pass.  We are here for you and your hubby as well!

Wishing you pain free days ahead!

Jeannie

Hi Amanda and Welcome..

You have found family here; we all understand because we all either have ch's or support someone that does.

There is lots of information on this sight and many people willing to assist you any way we can.

Peace & Blessings
LadyLuv

Bob's given you your first dose of required reading. You suffer from a relatively rare disorder. Doc's go their whole career and never see a CH patient. It's up to you to educate yourself andf assist your doc with your treatment. Only a couple of the people on the board are doctors, but there's 10,000 years of experience here and that's worth its weight in gold!!!

Do give 02 a try, 30 years of dancing and it's stil my best friend for aborting an attack! Welcome home.

Joe

Thanks for the welcome,

You guys rock! All the advice and info is greatly apprecitated. I have tried O2 and it didn't work but I think that I might give it another try. I'm not sure if I used it propperly. I have the problem that when I peak in my ch, I get really sick. From alot of my reading I hear not many people experience this. I don't have a weak stomack but when it comes to the beast, well its all over. Right now I am at the peak of my cycle (i hope!!) and am getting 4 a day but I have been in the cycle for about a month and a half (the longest cycle i have ever had). My remissions are getting longer and longer. This last one was 2 years. But I feel I pay for the time. The beast seems to get stronger every time. My doctor told me it is possible that I can grow out of them. Is this true?

Again thank you for everything guys!

Amanda

Amanda,

Check your PM InBox...

V/R, Batch

amandoe wrote on Mar 9^th, 2009 at 9:43pm:

My doctor told me it is possible that I can grow out of them. Is this true?

YUP!!!  That is true!  And as soon as I grow up, I will grow out of them!!!  After all, I am ONLY 59 years old ...

Chuck

A percentage of people grow out of them.....but there doesn't seem to be any rhyme or reason so don't hold your breath!!! Be ready to do battle and hope every remission is the last one!!!

Joe

HI Amanda, and welcome to the site!  Please read as much as you can, as many have said, you will probably be the one to educate your doctors.  I consider ClusterChuck to be the Grand PooPah on O2 therapy here.  If you have questions about the proper way to use it, I would consult him.

Regarding your question about "growing out of them", after speaking with Dr. Goadsby, he says most people simply go into a remission, which could include many years.  My husband hasn't had a cluster in almost 8 years, but that doesn't mean it isn't in the back of my mind EVERYDAY!!

Again, welcome!  Ask as many questions as you need.  We are here to help and support you!

Stephanie

Hi Amanda

Well I am just recovering from a recent cycle... found this board in the middle of it and they convinced me to get O2 as an abort.  Well the O2 worked for me and has aborted every single headache.  I still carry imitrex to work just in case.... but so far O2 has been the best thing I have found. Thanks again to everyone on this site!!

Gary

That's great news Gmann! Another 02 success story, it's great stuff aint it? [smiley=thumbsup.gif]

Joe

Hi Amanda, and welcome!

You're probably going to notice a lot of information and suggestions repeated here.  It's because some things tend to help a lot of people and some things tend to not help many at all, so those topics are pushed/avioded accordingly.

You're also going to find the most supportive, responsive, nicest people on earth in this forum, so you've come to the right place!  We can all relate to what you're feeling in one way or another, and it has always helped me to know I'm not alone.  You can't feel more alone than in the middle of a nasty CH hit, but others are and have been where you are... we survive and find ways to cope, and enjoy PF days of life all the more, and the support here only goes to help that all along.

One of the first things I'd suggest is trying to see a good neurologist.  What part of PA are you in?  Perhaps someone here has a good referral, and there is a list at the OUCH web site as well at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and there are a lot of doctors in PA.  It helps to have a good GP and a neuro for this beast we live with.

Verapamil is incredibly effective for a lot of people, and especially so when you first try it, so it's not a bad idea.  I'd read up on the standard dosing for CH.  Some people start out at 120 or 240mg a day.  An extended release pill is helpful, but if it doesn't work, suggest to your doctor that you try 3 non ER pills a day, or a staggared dose where it's lighter at times and stronger other times, as this helps a lot of people with verapamil.

Another drug used along with Verapamil is Prednisone.  Basically it's a steroid, and used when you first start the Verapamil.  Ask your doctor to check into this.  

You also may want to look into abortive treatments.  Most people use imitrex via pill, inhaler or a shot with great results in helping relieve or end a headache.  Another great abortive is 100% oxygen at a high flow with a special mask.  This is safer, has virtually no side effects and is cheaper than imitrex.  I know you tried it, but it didn't work for me at first either.  I got a larger regulator, set the flow higher, got a Clustermasx (now I think you'd get an Optimask), and made sure to keep breathing the oxygen for a long while after it made the pain go away, and it works quite well for me now.  Personally I keep Verapamil, Prednisone, Imitrex pills, Imitrex injections and Oxygen at home and use what works best for the situation with great results.  I would have your doctor look into all of these things.  Being informed and prepared before you go to your doctor or even a neurologist helps a lot, and being prepared with the right tools from your doctor will make living with this condition much easier.

There are, of course, other medications that work well for people that things like Verapamil or Imitrex dont work for, cause too many side effects, etc. and this would be best discussed with a neuro or doctor.  Lithium works very well for people too, but I'd try the Verapamil first.  There are also tons of herbal/OTC remedies that work for a lot of people like water treatment, melatonin, kudzu root, etc.  There is a ton of information about all of these on this site, so read up.  

A LOT of people also find unbelievable relief with LSA/LSD and mushrooms.  There is a website all about this at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE that you should check out for further information.  One method for people scared of trying LSD or mushrooms (and due to it's illegality) is RC seeds which have LSA in them.  Check out their site for more info. if this insterests you.

There will be a conference for us clusterheads this year in St. Louis come July.  I've met a couple of CHers and it really can be life changing to be around people who can relate.  I am trying my hardest to get there this year, and if you can you might want to look into this as well.  

As for growing out of the headaches... it happens for a lot of people, but not everyone, so there is no solid answer here.  My grandma had them and they went away in her 50s.  One can only hope!

Otherwise, welcome again, and don't hesitate to ask anything that's on your mind, share your stories, vent, rant, rave, whatever.  That's what we're here for!

There will be a conference for us clusterheads this year in St. Louis come July.  I've met a couple of CHers and it really can be life changing to be around people who can relate.  I am trying my hardest to get there this year, and if you can you might want to look into this as well.

After many years of prodding I got my wife to attend a CH get together this year. Now she can't wait for the July get together. It's really an awesome experience, if there's any way you can get there you'll never regret going!

Joe