Hey again, my neurologist had emailed him the details.   I'm supposed to be having an ECG on Tuesday and I'm currently looking at a very attractive box of Verapamil Tablets. The dosage of the Verapamil seems worryingly low.  My neurologist adviced starting me on 120mg yet my GP has started me on 40mg to be increased to 80mg after 7 days then up to 120mg after another 7 days.  If the 120mg dose doesn't work (I read on ouch 240mg is usually minimum) I have to wait a further 10 days before I can book an appointment then probably 6-15 days till I'll be able to see my GP.

He seems to be ignorant to the fact he's asking me to wait a whole month in agony...  Not impressed. 

Anyway, he's consulting Air Products and the local pharmacy about getting me oxygen, the only thing I know for certain is that it will be 100%, judging by the way things have been working out I'll probably end up with a nasal cannula.  However, once I get the tanks that's the main thing covered. 

I've also flat out refused to come off pizotifen or start Verapamil until I have access to oxygen.  I think that's pretty fair... 

Hope you're all coping,
All the best, Tom

Getting diagnosed by a doctor can be the best thing for you. If you don't really have CH, trust me hun, you DON'T want them! To modify the words of Hamlet, "Get thee to a nero!" (Seriously though, get there.)

~Felicia.

I'm sorry it took me so long to get to you dear. It sounds like what you are dealing with is a mix of CH and mirgaines. Light and sound usually don't have the same effects with a cluster as with a migraine. My suggestion is get your self to a doctor, preferably a nero. They will hopefully be able to figure out what is going on for certain. It is always good to know what you are dealling with for sure. Lots of luck to you.

Always,
~Felicia.

Well you found a place to get connected my friend. Hopefully you do not have CH though and will not have to be here long.
From the sounds of it, you most likely do not have clusters. If you have only been experiencing them for a few days then it could be (and most likely is) something else.
A few questions you need to ask yourself though:
1. Have you had any sort of headache in your past to compare these ones to?
2. What kind of stress are you under?
3. How long do they last and how intense is the pain on the Kip scale?
4. Where is the pain located mostly?
My next suggestion is start a log of the pain in a notebook. If/when you go to see a doctor(preferably a neurologist) about these headaches, that will be their first suggestion. Its always nice to be a step ahead.
Hope you find your answer quickly so you can get the relief you need. Keep in touch and keep us updated. We are here to help the best that we can.
~Felicia.

Welcome to the board Amy. Are you working with a headache specialist neuro 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. Do visit your local support group as they have more area specific advice for CH'ers:

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I’ve had CH for 33 years, 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:

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

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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.

Go to the meds section of this board and read the post, "123 pain free days and I think I know why", it’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

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.

As to the propronolol......not really a main stream med, indicates the doc your seeing probably isn't that up on CH, all the more reason to get a referral to a headache specialist neurologist.

You're young, if it is CH it's probably a lifetime malady. Not the end of the world but the sooner you get a handle on it the better the rest of your life goes! 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

Hi,  I'm 17 - I've been suffering with CH for about 9 months now, I was first diagnosed with Paroxysmal Hemicrania - by the Nuro, the headaches became worse and with a few trips in an Ambulance to the Hospital with copious amounts of morphine, Valium, etc, I had the DR's stumped to why my "migraine" wasn't going away and why I was still in intense pain, after being told various times by a couple of the nurses to "calm down, the pain can't be that bad" (and being tempted to stab them in the eye, just to see how they would feel) my parents bumped into a Locum DR who just happened to be a Nuro, who just happened to have worked with CH's before - I now have an appointment with a specialist in London, on a high dose of Steroids and Topirimate (Has anybody had any luck with this before?). I've previously been on.... Gabapentin, Verapamil, Dyhdra-Codine, Zomig & Idometcine (excuse the spelling of those). Oh & 100% Oxygen...  The doctors are reluctant to put me on Sumpatriptain as I am currently also on Prozac.

I was also given Entonox in the Hospital and so far out of anything I've tried, that seemed to have given me the quickest pain relief...

I'm now almost 35, but I had CH since I was approximately 13. It took YEARS until I was diagnosed properly, and I know exactly how young teens feel about this, and how their parents feel about it too. I know the troubles you face in school, street, club, and basically everywhere. It's not only the pain, but you got to explain to others too.

Fortunately now CH is much more well known and understood "treatment-wise not social-wise". You've got O2 and triptans.

I remember that day, one of the best of my life. I was may be 16 or something, of course I have learned by then that no pain-relief medications ever work for "that thing" I got. When I was suffering in silence on the sofa, with pain driving me both crazy and half-dead, any noise would increase it, and any movement too. My mother went to buy the prescribed medicine after diagnosis, and came back to inject me with Imigran "Imitrex", and my HUGGGGGEEEEE surprise and RELIEFFF to realize the beast was gone, fully gone. I will never forget that day for the rest of my life. I am not saying that my life became easy after that point, but certainly much, much easier.

Hi! I'm Marisa. I just found this site while researching and I'm 17 almost 18 and I've been suffering since I was 14.  But I live in a small town in Maine and the first neurologist I was sent to basically just kept telling me it was migraines and I just felt like she wasn't understanding me. (where I live basically all the good neurologists won't take anyone under 18.) I had every test imaginable done and there was never anything wrong with my brain or my spine or anything. But yet I was still having such intense pain to the point where I was crying and crying. And everything the neurologist gave me did nothing. My mother also didn't think I was suffering from migraines because my sister does. And she can just take a couple of tylenol and sleep it off and she won't have another one for a month. And she also feels sick to her stomach during one. I have never felt sick during a headache. Finally we told my doctor that she just was throwing pills at me and not really trying to figure out why this was happening or what it was. So my primary doctor asked me to tell him all of my symptoms and he was going to talk to an 'adult' neurologist and find his option. I told him everything that I felt. That it was one sided, it was an intense throbbing pain, that my right eye swells and waters and my nose runs, that I wake up with them in the middle of the night. That I get no relief from them. That I was having them a few times a day and everyday for weeks at a time and then I'd go a few weeks without them and then they were back again. After telling him all of this and he talked to the neurologist he said that I had to have cluster headaches. And I'm on oxygen therapy and a few other things for pain relief until I see a specialist five hours away from where I live. I honestly never had pain like this in my head until I started having these. And I had cancer and chemo when I was 12. And I would honestly say that these headaches are 1000 times worse than anything that I had done during chemo. (some of my doctors are wondering if chemo somehow did damage to make these headaches start but there's no way to know that.) My night attacks are the worst though. I don't get any sleep. And since these headaches have started when I was 14 (which was my freshman year) I've missed SO much school. I'm struggling just to make sure I graduate this year. (If I don't find relief I don't even know how I'll survive college.) I'm going on basically three months of being out of school right now because they've been so god awful. I literally will wake up with one and be walking back and forth or rocking and crying. and telling my mom i need my oxygen tank changed. or that i need to go to ER at 4 in the morning because I can't take the pain and how exhausted I am. Lack of sleep is killing me. Last night I had such a bad night attack I woke up today with a swollen eye that looks dark and bruised like i was literally punched in the eye. It takes so much out on me. Not only me but my mom. She's up all night with me sometimes (bless her, she is amazing. she researches so much on them and tries to find different things that could possibly help.) rubbing my neck or changing my tank. Or sometimes taking me to the ER when she was to work the next morning. And I get so agitated at everything. I feel bad because I take it out on my family and my boyfriend(who has been with me since we were 14 and has been through all of this with me. Bless him also.) I also feel so depressed and down during them and it's hard. I feel like I have no life. I literally am in bed all the time because I'm in pain or because I got no sleep the night before. When my boyfriend and I do stuff together it usually involves watching movies or TV because I never feel great enough to go out and do things. When I'm feeling good though he'll take me out to eat or to the movies.
Not sure if I'm episodic or chronic yet. I have them A LOT. I had a cycle start May '13 and end July '13. But I had them back September '13 and basically have had them since. And it seems like since I was 14 and started getting them that once I get them I have them longer and longer.

But I'm soo glad I found this website! It's so helpful. It makes me feel like I'm not alone and that they're other people who understand what I'm going through. I seriously cannot wait to go to the specialist and get some sort of help because I can't take it.