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Bella86

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Sweden
Gender: female

No diagnos
Oct 15^th, 2013 at 10:11am

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.

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Batch

CH.com Alumnus

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: No diagnos
Reply #1 - Oct 15^th, 2013 at 11:38am

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:

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

or

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Oct 15^th, 2013 at 11:38am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Hoppy

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LAUGHTER IS THE BEST MEDICINE

Posts: 1890
Perth WA
Gender: male

Re: No diagnos
Reply #2 - Oct 15^th, 2013 at 4:42pm

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.

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Bella86

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Sweden
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Re: No diagnos
Reply #3 - Oct 15^th, 2013 at 7:12pm

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!

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: No diagnos Reply #4 - Oct 15^th, 2013 at 7:45pm 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.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: No diagnos Reply #5 - Oct 15^th, 2013 at 8:59pm 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.
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wimsey1

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MA
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Re: No diagnos
Reply #6 - Oct 16^th, 2013 at 7:48am

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

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Bella86

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Sweden
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Re: No diagnos
Reply #7 - 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.

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Potter

Ex Member

Re: No diagnos
Reply #8 - Oct 16^th, 2013 at 11:37am

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

or

Potter

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« Last Edit: Oct 16^th, 2013 at 11:37am by N/A »

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Bella86 CH.com Newbie Offline I Love CH.com! Posts: 4 Sweden Gender:	Re: No diagnos Reply #9 - Oct 16^th, 2013 at 12:03pm Interesting. You guys know more about this than all the doctors I've met so far I'm impressed
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: No diagnos Reply #10 - Oct 16^th, 2013 at 3:03pm 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
Back to top	You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there IP Logged

Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: No diagnos
Reply #11 - Oct 16^th, 2013 at 3:23pm

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:

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

or

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

or

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Oct 16^th, 2013 at 4:22pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: No diagnos Reply #12 - Oct 17^th, 2013 at 12:49am Read up about how we use oxygen - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or . Using the nose canulas is useless for trying to abort CHs.
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theAnthonyCarter

CH.com Junior

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Got Imitrex?

Posts: 65
Victoria, Virginia
Gender: male

Re: No diagnos
Reply #13 - Oct 17^th, 2013 at 7:27am

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.

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« Last Edit: Oct 17^th, 2013 at 7:28am by theAnthonyCarter »

One clusterhead's cure is another clusterhead's trigger.

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wimsey1

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Posts: 2457
MA
Gender: male

Re: No diagnos
Reply #14 - Oct 17^th, 2013 at 8:44am

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

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: No diagnos
Reply #15 - Oct 22^nd, 2013 at 12:49pm

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.

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Bob Johnson

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