Hi everyone!
I'm totally new to this kind of message board, hope I don't mess up to badly. I'm 22 years old, my attacks started a year ago but I might have had them when I was a child (12-13 years old). I had severe headaches then but they weren't diagnosed, so now I suspect those were actually my first attacks.
Luckily I was diagnosed quite fast this time, I was set up with oxygen and my doc prescribed Verapamil which totally crushed my BP even though I was just in the starting phase.  So I changed to Topiramat (2x25mg/d). For emergencies I have sprays.
My attacks were more frequent (3-5 in 24 hrs, usually at least two at night) now it's thankfully more like 2 per week. That also means I can't predict them, they're off schedule now. I am scared of the pain. I can't sleep when I haven't had one in a few days, I am so scared to wake up in pain. I once tried to scratch the pain away during an attack at night and gave myself a scar over my eyebrow. So I constantly switch between being exhausted to sleeping until noon at the moment.
I'm having a really hard time adjusting to the fact that I need to take meds every day, and that my brain, of which I have always been kinda proud, is torturing me for no reason. No one in my environment understands the amount of pain I am in and how debilitating this condition is. I think I am on the verge of depression and I honestly don't recognize this person I have become anymore. This is not me. That's another thing I can't accept yet, that I probably will never be the same again. My life has been changed so deeply by this. I have had to do two extra semesters in my undergrad course, I can barely keep up appearances with my family and friends anymore.
How did you deal with the change? How do you accept that you will never be able to call yourself healthy again?

Hi Clarice and welcome,
Sorry to read your despair! Having to put up with the  [smiley=evil.gif] paying you visits, but their is light at the end of the tunnel! Batch will be in touch with you, and introduce you to the vitamin D regimen, it has lots of us here CH free, myself included, after having to deal with the  [smiley=evil.gif] for 43yrs.

Hoppy

I don't understand why you stopped using Verap since you report that it worked so well for you.

The replacemnt med s(Top.) has a very poor reputation both as not being effective and because of side effects.

You live in a country with a good medical system. I'd suggest that you return to the doctor who is/was treating you and discuss BOTH the need to change your treatment plan. Also, you need to discuss the emotional tensions which you mention about having Cluster and your urge to avoid dealing with the situation. Emotional tensions/conflicts about what is happening to you can be a major barrier to a good outcome. You'll be living with Cluster for years and you must get your emotional life at peace if thee is to be success.

Hi Bob! I think you misread, the Verapamil didn't work at all for me, I couldn't even stand up for more than a minute or so because my BP was crashing constantly.

Thanks for the correction.

And the rest of the message?

Hi Clarice and welcome

As Bob posted, you need to work with your doctor to get an effective preventive which will cut down how many CHs you get whilst minimising the side effects. This will make a massive difference to the impact that CH has on your life.

You mentioned a spray for when you get a CH, have you also got access to oxygen? This can be very effective at killing off a CH.

Also do look at how many of us are using vitamin D3 as a preventive. It has been very effective for a lot of people with some, including myself, being CH pain free for multiple years.

Clarice, Doesn't look like Batch has been in touch with you. So, you can find all the information on the vitamin D regimen at the link Medications, Treatments, Therapies on the main board, then click on the link 123 Days PF and I Think I Know Why. Theirs a lot of reading, but the vitamins you need for the regiment are listed there. Also get a 25 (OH) D blood test to see if your vitamin D levels are on the low side... For the regimen to work you need a serum concentration of around 80ng/mL (200nmol/L). Do give it a try, and don't become dis-hearted if it doesn't work straight away, as it can take up too a month or so, before it kicks in, but you need to stay on it for the rest of your life.

Cheers, Hoppy 

Hey everyone!

Thanks for all the infos, I'm going to look into the vitamins. Right now I don't have access to O2, my CH attacks are too infrequent according to my doc to prescribe it. The Topiramate is quite okay as a preventive, since the alternatives presented to me by two different doctors had even more & worse side effects (apparently it's either Lithium or Steroids, because I can't take anything that has a big influence on my BP).
I'm also going to see my GP about my sleeping problems next week

Clarice, have you tried taking 5-15mg of Melatonin before going to bed? it has a good record of keeping those night attacks away, and a good nights sleep. It can take a couple of weeks to kick in. You can buy it online from the Biovea website.

Hoppy

Clarice - Verapamil is indeed a strong drug, but after a few days you begin to adjust to it.  When I first started I too felt very lightheaded, but after a week or so (and being very careful to stand up s-l-o-w-l-y) things settled down.

As you have nighttime hits you might also consider asking your doctor about a Sleep Study.  I suffered through years of night time hits, and then a new neurologist suggested the possibility that Sleep Apnea was contributing to the CH.  After the sleep study I was put on a CPAP machine (June of 2015) and have not had a CH attack since then.  For me it has been a miracle.

Best of luck to you, and keep asking questions. There are some really smart and experienced people here who can help you through this.

Hi Clarice,
Try not to dispair. You mustn't let this thing beat you. I know it's easy to say - I've been in a very dark place myself, but once you get "experienced" (we're all experts at handling pain) you will find you can live with it. 

If your attack seem to be dropping off to a couple a week, it's likely that your cycle is coming to an end, and you'll find life returns to normal between cycles.

You need to prepare in advance for when a cycle starts, have plenty of meds ready, and then resign yourself to it. Know that it will stop eventually, albeit temorarily. I don't even try to fight it any more - just wait for it to come and deal with it. The worst thing you can do is worry and fret between attacks - It effects your WHOLE life then.

I have told myself so many times that there are people far worse off than me. I still have all my arms and legs and I can move them all, I can see, No terminal cancer, no birth defects, etc etc. Yes, things could be worse. That helps me get through.

When you start to feel depressed, just pay us a visit. We are always here to listen, and more importantly to understand. Someone is here 24/7 to answer your questions, or just to read your rants if that's what you want to do.

Press your doctor for the oxygen.  It doesn't matter if you don't use it often. Some one here once said there is no better sight than an 02 tank gathering dust.

Keep coming back and let us know how you're doing.
Maz.

Hey Clarice,

Were you able to get the lab test for your 25(OH)D?  Have you started the anti-inflammatory regimen?  How about contacting Herr Fuchs?

Take care and please keep us posted.

V/R, Batch