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Hey im a mum of two beautiful baby girls . I got diagnosed with cluster headaches today had read about them but didnt actually think thats what i was suffering from I had actually convinced myself that i had either a brain tumour or a Blood clot in the brain SAD i know. As every morning without fail for the past year and a half i have woken up with the dreaded headache it goes away after i take some painkillers but within 2 /3 hours its back and sometimes worse .. i have also been woken up during the night with a severe headache to the point where i just sit crying feeling very sick and sorry for myself and cannot keep water down let alone painkillers!! vicious circle aye lol.. Ive been prescribed Naproxen 250mg but been told that if they dont touch the headaches then to go back and we will try some different pills. I do take co-codamol 8/500 everyday and i thought that could be the problem at first but my doctor has decided that i should keep on taking them not sure if this is the best idea. Just wondering something really .. Does anyone that suffer cluster headaches get the sort of tightness in the head and temples?? i get that and sometimes i find it more scary than the actual headache. As you can tell i haven't done much research at the moment so if anyone would like to talk and tell me some more symptoms its would be really helpfull and at the same time good to know because a few hours ago i thought i was the only one in the world that was suffering daily with these headaches and now that i know there are lots of people i think it would be great to have a chat and learn how everyone copes thanks alot x

Nope, your not on your own NOW!

Our finest will be along shortly with a proper welcome
and the BEST(or even better)  support you will get outside the surgery!

11 years ago that is exactly what I thought I had when CH started, and it
took another 6 years before I was properly diagnosed.....

So a very warm welcome to you Mom of 2

Best wishes and Respect

Gary

Dear mummy of 2 girls,
I've been glued to this message board for the past three weeks during this most recent cycle! 
Through the years, when I've been out of cycle, I've often come back just to see what new treatments have been found.
I've had a lot of help and support dealing with these headaches from the veterans who post here. 
As to the tightness in the head and temples, I get very tight muscles in my neck, upper shoulder and mid back on the same side as the headaches.  It seems that everyone is a little different in how they're affected. 
Check out the links to Oxygen therapy and find a Doctor who has an understanding of Clusters, or at least a Doc who cares enough to listen.
Welcome!!

Since you're a "mum" I guess you must be from the UK or Canada!  :)

Glad you found us - especially since there are effective treatments for this pesky condition, none of which have been offered to you by the medical types yet.

So first of all it sounds like you really seriously need to be seeking out a headcahe specialist. Such a specialist will know much more about this than any rank and file neurologist.

Then there's the O2 therapy mentioned above that will abort a CH attack quick! Check out that oxygen info link to the left of this page for info on the newer, more effective way to administer O2 that even headache specialists generally aren't up to date on yet.

So yeah let's get you off of those crummy drugs that hardly do jack and get ya some relief!  :) Please stick around, read a bunch, keep asking those questions, and join others here who have done the same and have seen a real turnaround.  8-)

.

Hi and welcome to CH.com,

Now that you have your diagnosis, it's up to you to educate yourself so you can help your Dr find an effective treatment plan.  CH doesn't have to be as bad as you are experiencing right now. 

The most common preventative medication prescribed for us is Verapamil at a high dosage.   Oxygen  can abort a CH in minutes if used correctly.   

Until you can get your doctor all of the info you will acquire here you can buy some energy drinks like Red Bull.  If I drink one at the first sign of an attack, it can lessen the intensity and duration of the pain.  Ice on my face helps some too.

Hang in there.  Stick around and read..... there is so much hope here.

PF wishes,

Jeannie

Hi, I am new here too.

I am also just getting to grips with this monster thats lives inside my head and keeps giving me so much grief.

I know what you mean about suspecting a brain tumor, it is a thought that has certainly crossed my mind many times.

If you are in the UK it would be interesting to see if your GP treats it any different to mine. Keep us informed.  :)

Quote:

I had actually convinced myself that i had either a brain tumour or a Blood clot...

Quote:

I know what you mean about suspecting a brain tumor, it is a thought that has certainly crossed my mind many times.

Which is why any headache doc worth their salt will order an MRI at the beginning of the diagnosis process. To rule out things that it isn't.

I havent had a scan or a referral to a neurologist, I was diagnosed January last year, so in my case it clearly isnt a tumor/clot need to ask my doctor if he is going to refer me, I hate going to docs and telling them what to do, I feel its not my place to tell him what to do, but believe me with this pain I am going to have to.

Then you weren't thoroughly diagnosed.

You have much to learn, little grasshopper, if you feel it's not your place to make suggestions to doctors.

Welcome to the board Mum! I'm also guessing you might be from the UK. Please check out your most excellent support group..(as bob would say! ;))  but by NO MEANS stop hanigng out here. They just have area specific answers for your medical system.

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Okay......you have CH, the first thing you learn is pain killers do damned little, and end up causing you far more problems then they solve. The trick is to stop the MECHANISM of thr pain before it really sets in.

As previously mentioned, read this link.

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I am a 33 year CH'er, went from 90-120 minute rides, to 6-8 minute aborts just by huffing pure oxygen. For me it's not a stand alone treatment, but without question the cheapest, most consistently effective, fastest, with no side effects. Sounds too good to be true huh? :)

Imitrex injectables or nasal spray, don't get the pills they take too long to be absorbed to be of much use to CH'ers. I keep the ijectable on hand for when I get caught away from my 02, or the rare occasion when 02 won't beat it down. They're expensive and in my experience the 02 works most of the time so I don't use them much.

Look into energy drinks for now; Monster, Red Bull, any containing the combo of caffiene and taurine. Chugged at the first sign of an attack many can abort or really reduce an attack. I use it with my oxygen, I drink one on the rocks while aborting with 02. Seems to speed the abort and prevents the beast from coming back for a while.

Talk to your doc about prevents. A med you take daily to reduce the number and intensity of your attacks. I use lithium when I'm on cycle, at 1200 mg a day blocks 60-70% of my attacks. Verapamil is the typical first round prevent, but at doses higher then doctors are used to. Some go as high as 960 mg a day to get relief.

We've learned thru painful experience, your best shot at a decent treatment regimen lies in finding a headache specialist neuro. GP's know nothing about CH, most neuros are just as bad. At the same time, educate yourself and learn how to be a zealous advocate for yourself. Sitting back and waiting for  a doc to save you is a recipe for many many many more painful attacks. We'll help you every step of the way.

joe

Hi,

I am a long time veteran of cluster headaches also.  I am 52 now but I remember going through the diagnosis like it was yesterday.  I ran the gamut here in Boston and went to the best Neuros at Mass. General and was still misdiagnosed for many years.

Read and read and read you will get through this.  First thing to check into is the oxygen -- everyone is right it is your first line of defense.  Not as scary as you think (oxygen use) and you will be able to function better and not worry about the kids (in my younger days that is all I use to think about was how am I going to take care of the kids)

The 02 will not prevent or stop the cluster episodes but it will abort the pain of the moment if used the right way....could not live without it.

The rest of the meds discussed here work differently for different people -- being brand new to clusters it takes awhile sometimes to find the right regimen.

Familarize yourself with the most widely used drugs so that when you talk with your doctor (hopefully a Neuro or really good family practitioner) you both can get on the same page as to how to proceed. 

I wouldn't wish this disease on anyone -- tough to deal with and this forum has helped me for many many years, sometimes I just read and read and absorb the wisdom and experience always reminding me that I'll get through it all ...

Hang tough and when you think you can't do it anymore - then come here and share.

Get your oxygen ASAP ... it will help you move on to the next steps!

Hey♀/♀♀,

Welcome to CH.com.  You've come to the right place.  So far you're batting a thousand in being prescribed and taking medications that are totally ineffective for cluster headaches. NSAIDs like naproxen and opiates do nothing for cluster headache and could end up causing more serious problems.

Please go to the following link and print a copy for your physician.  There is no sense in playing by guess and by golly not to mention wasting a lot of painful time when proven strategies exist for treating our disorder.

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The EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias was prepared by a task force of internationally known neurologists who have far more expertise and experience in treating patients suffering from cluster headache than the average PCP or general neurologist.

Most neurologists experienced in treating patients with cluster headache will do a thorough exam with lots of questions about other conditions.  Then, if there are no contraindications, they start with a prescription for a transitional preventative like a 10-day to 2-week prednisone taper that should prevent attacks while you start dosing up to therapeutic level with another preventative like verapamil.  They also prescribe oxygen therapy as an acute treatment and abortive with one of the triptans as an escape abortive in the event the oxygen therapy is unable to stop the cluster headache.

Make sure you ask that your prescription for oxygen therapy is written for a minimum flow rate of 15 liters/minute with a non-rebreathing mask.  It's worth asking that the Rx for oxygen therapy be written for 25 liters/minute as higher flow rates are perfectly safe and a lot more effective in aborting the pain of cluster headache than 15 liters/minute. 

If your physician is hesitant at prescribing oxygen at the higher flow rates tell him it is not being used as a supplement for COPD and that you need a flow rate of 25 liters to have a therapeutic effect in order to abort your cluster headaches.

If he still gets goosey about the oxygen flow rate... tell him that astronauts routinely breathe 100% oxygen at much higher flow rates for up to 6 hours while working in outer space.

Hope this helps,

Take care,

V/R, Batch