I am so frustrated. Second time this happens. Firat time it went away in about a week. Pain has lasted for 8 days it is there all the time. I have a burning sensation left side of my head, stabbing pain behind eye and temple. When the pain is at its worst it goes down towards my jaw and ear. Left eye is drooping. I dont recognize myself in the mirror my eyes are red and puffy like I cried all night. Almost look high. My gp sent me to a neurologist, had a CT scan. Showed nothing. Symtoms remind of CH bit according to them I am not a typical "victim": 27 years healthy rarely drink alcohol or smoke. Nothing helps this awful pain no oxygen no triptans. The doctor says it should ease the pain if its CH. Got codeine which relaxed my muscles but the pain is persistent. I want to pull my hair and beat my head against a wall. Sounds crazy but I hate this don't know if its CH could use some advice. Do you have similar symtoms? What helped you? Tried naproxen,zomig nasal, sumatriptan,oxygen. Feels like I know more then the doctors. Was advised to take a long run and I just want to cry. Please advise me if you have any  experience of this headache.

Hey Bella,

Check your PM inbox...  Also, the next time you see your PCP or neurologist, ask for the lab test for 25-Hydroxyvitamin D.  It's also called 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.

The odds are you're vitamin D3 deficient and that deficiency is likely what is contributing to the frequency, severity and duration of your headaches.

Check out the following link for details:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

Hi Bella,
It would seem your at the right age for CH's to start, sorry
to have too say. You mentioned you have seen a neuro
and had cat scans and all is fine. To satisfy yourself have
you taken the cluster quiz the link is to your left on this
page. Your next step is to keep in touch with Batch and
follow the vitamin D3 regime to the letter, it has a 80%
success rate in becoming pain free myself included.

Good Luck, Hoppy.

Thanks for sharing. The d3 theory is interesting since I live in Sweden probably one of the coldest and darkest countries. And thanks for the information Bob just too bad I live in a small town in Sweden. I was sent to a neurologist supposedly an expert in headaches. Just dissapointed when the answer I got was that CH is a headache most common among 50 year old alcoholics. And Im not sure about the medication I think we all respond differently.
Hoppy took the quiz and everything is pointing at CH but I guess I have to wait and see if I can have a proper diagnose. Thanks you guys!

G'day Bella, and if the neurologist told you that CH is most common among 50 year old alcoholics then you really should consider finding another neurologist.

Hi Bella,
Brian is spot on, i've never heard such nonsense. CH's can
start at any age, but the most common age is when your
25-30yrs old. Your quiz results would indercate CH's, but
their are other headaches that mimic CH's, so i'ts wise to
seek out a headache specialist just to be sure and for your
own peace of mind.

Hoppy.

Out of curiosity...you say you "tried" O2? But how, and at what flow rate? Also you tried sumatriptan. But do you mean the pills? I ask because O2 does not work unless used properly for CHs, and the pills are nearly useless for us. These are two frontline abortives for CHs and I would be very surprised if you found no relief using high flow O2 with the right equipment, and Imitrex (suma) injections. Blessings. lance

The GP tried oxygen before visit to neuro. It was not given through a mask but through a nasal cannula if this should matter. About 15 minutes and I don't know the flow rate. And by the sumatriptan I mean the 100 mg pill. Its been a week today starting too feel slightly better but my left side scalp is still tender feel beaten but no attack so far...The worst part of this (whatever it is) is that doctors don't seem to be educated enough to help you.

Bella86 wrote on Oct 16^th, 2013 at 11:28am:

The GP tried oxygen before visit to neuro. It was not given through a mask but through a nasal cannula if this should matter. About 15 minutes and I don't know the flow rate. And by the sumatriptan I mean the 100 mg pill. Its been a week today starting too feel slightly better but my left side scalp is still tender feel beaten but no attack so far...The worst part of this (whatever it is) is that doctors don't seem to be educated enough to help you.

That won't cut it.  Of course it matters,  please read START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

           Potter

Interesting. You guys know more about this than all the doctors I've met so far :) I'm impressed

Bella,

Check your PM inbox at the top left of this page under the greeting, "Good Morning/Afternoon/Evening Bella." 

Click on the bold words "2 New Messages"

Take care,

V/R, Batch

Bella,

Contact the folks at AGA there in Sweden.  Tell them you're a cluster headache sufferer and need a LIV, (Linde Integrated Valve) home oxygen system capable of delivering oxygen at a flow rate up to 15 liters/minute. 

They should know what you'll need for a home oxygen system including the non-rebreathing oxygen mask... and what you'll need to do to get it delivered.

See the following links & nums:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Telephone: +46.8.731-1000
Telephone: +46.8.731-1800
Fax: +46.8.628-2325
E-Mail: lhkundcenter@se.aga.com
Website: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

Read up about how we use oxygen - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Using the nose canulas is useless for trying to abort CHs.

For the sumatriptan, the pills are worthless. For me, even the nasal inhaler version is, for whatever reason, worthless. However, the injectable form works about 95% or more of the time. It's the only abortive that I have been able to try that does work, in fact. See about getting that, and check out the Imitrex tip in the menu to the left of this site. That tip may help with the cost and any side-effects you may have.

Many others here can help more with the O2, as I have yet to even get a doctor to consider prescribing it, so I haven't tried it myself. But, they swear by it when used properly.

As for Batch's D3 regimine, I'm currently trying that out myself and hoping for the best.

My clusters started at 19 years old, so I have to agree with AussieBrian in that maybe a different neuro is in your future.

Hope you find relief.

Thank you for replying, Bella. It is as I suspected and yes, we do know more about how to manage the Beast than most doctors. That's because we're the ones in pain. To them, it is an exercise in medical practice.

Read up on the O2. It is a phenomenal abortive when used properly. So are the suma injections. There is no need to suffer needlessly. Push for both of these and ask any questions here that will help you ease the pain. God bless. lance

I assume that your health care system can arrange for you to be referred to a headache specialist or treatment center. Clearly, you local doc is not going to be a source of effective care.

If your doc doesn't agree with the need for a referral, sugewt you contact your local hospital, talk to the social worker/social service people, to find your options for referral.