hi im new on this forum. my name is marie im 25 i was diagnosed with cluster headaches aftera  week in hospital just wondered what every 1 else is like hope to speak to u all soon xx

Hi Marie and welcome. I will throw my two cents in about the o2 to abort Cluster headaches.
100% o2 with a 15 LPM regulator (at least) and a non-rebreather mask or a much better version available to your left at the "CH.com store". Get on it at the very first sign of an on-coming hit. No out side air whatsoever! I can also abort an attack within a few minutes.

Read all there is to read to your left and print off the o2 info and talk to your doc about it. If he/she refuses the o2, you might want to consider another doc who really understands this crippling pain that we share.

Prevents, there are quite a few options. Some options you need to talk to with your doc, but you will find what works best for you.

The main thing is that you are not alone with this anymore, you are amongst others who TRUELY understand what hell we each go through with CH's.

 Barry

Hi Marie,welcome to the family.

Iddy

aww bles you all you all are so welcoming well ill tell u my story ad we can take it from there.....

My problems started just after giving birth to my youngest child in November 2007. I was always tired and restless and after months of nagging my Drs they finally did a blood test which told me I had an immune disease. I started treatment in September 08. All seemed to be going ok. I started getting ahead ache every now and then but taking a paracetamol got rid of it so wasn’t too worried. In December 08 I was taken into hospital with as suspected ectopic pregnancy(had same symptoms as id had the yea b4 when I had an ectopic then) as it turned out it wasn’t that but  a bladder problem was picked up. While I was there I was given a nurological examination where it was discovered that I was quite numb down my right hand side. I was referred to a neurologist and sent home after my treatment for the bladder problem. 3 weeks past and I seemed to be feeling a bit better then one evening all of a sudden I got this really shape pain in my head it felt like I had brain freeze all over again and again I took some paracetamol and still didn’t feel any better so my fiancée took the kids to bed for me and I had an early night...r so I thought I would. The next day I was in agony I couldn’t move my neck as it was so stiff. My fiancé Andy called the Drs and made me an appointment. He had to take our eldest child to school so I took the baby with me to the Drs. The dr I saw thought that the headache must of been or could of been connected the neurological problems that I had been having so told me that she would try rush it thru and to try taking codeine as it was a bit stronger. When I got home I told Andy what the dr had said and he told me to go back to bed. I did as I was told and after an hour of not being able to sleep because the pain was unbearable I told Andy I didn’t feel good as by this point I was shaking and couldn’t stop although I was aware of this. I was really scared. I called pHs direct and they send and ambulance out as thet thought because of the numbness and my symptoms that I might have had a stroke!! When the paramedics arrived they took my temp which was 38.9 and said that I was probly coming down with something and that I should take paracetamol with the codeine and see how I go. If I don’t feel any better in a few hours to go back and see my go. I managed to drop off for a little while and was woken by this almighty pain in my head it felt as if sum was digging the point of a needle all down my head and neck. I rang my doctors surgery but it was closed so I was put thru to the out of hours surgery at the local a and e hospital. They said to come straight up and sent transport to come and get me. As I was walking thru the door I was collapsing at the bursts of pain I was having and was taken straight thru to a room. From there after being examined by a dr I was rushed in to accident and emergency and put straight on drip and was given some more paracetamol all I could think was just slit my throat now I was in so much pain it was unbelievable it was actual worse than being in full labour and that saying something!! Lol  After hours of watching my curl in a ball in so much pain I was moved to an observation unit and given some morphine even that didn’t help with the pain so then I was moved to a side ward as they thought had meningitis!! Omg by then I was really scared and all this time I was on my own I just fort the dr would give me some stringer meds and send me home so Andy stayed home with the kids. The dr left me and by this time id not slept for 3 days or more so somehow my body gave in and I slept for a few hours when I woke up the pains were still there and my eyes still hurt so bad but it wasn’t as shape as b4. I was woken by a nurse a little while later when she said the dr is going to do a lumbar puncture so see if u have meningitis unfortunately I had to go thru it for nothing as they couldn’t get to the fluid they needs o had to stop after 30mins of prodding and poking me they said they try the next day as I needed to rest. I was sent for a ct and MRI scan and they both came back clear. Over the next 24 hr the head ache calmed right down and with the pain meds codeine and paracetaol and oral morphine it seemed alot better I just had a fuzzy head.
The dr came to see me on day 6 and said that they think I’m suffering from cluster migraines or cluster headaches both as bad as each there and that if my headache hasn’t gone in a week to go back and see my dr, then I was discharged. My headaches although they weren’t too bad still hadn’t gone by the following week so I went to see my dr. She prescribed vapmaril for prevention and imigran ultra injections to stop an attack. I’ve used the imigran 4 times so far in that last 3 months and none of them have worked I used the vapmaril for weeks and they didn’t seem to help so I stopped them as my dr said to take them during an attack. I am having another attack atm although it’s nowhere near as bad as the 1st I had. I’m just lost don’t know what to do when I do use the imigran it makes me feel really poorly for rest of the day and sick so as u can see I have tried 2 things and there not working I’m not even sure if the drs have the right diagnosis here does any of this sound like cluster headaches to you??

thank hun im still waiting fo results req the numbness n nck pain do u think i shud see drabout starting vapmaril agan??

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

try this one.  There should be a bar on the left with a list, new vistiors, medical info, cluster traits, cluster quiz, etc.

If it was me, I'd check in with the dr again about using verapamil, at least tell him it didn't work and how you used it and ask about using it daily and increasing dosage. 

Charlotte

You seem to have a lot going on that may or may not be Cluster related.

I would avoid getting medical advice online and work closely with your medical professionals.