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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hello

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Hello (Read 1206 times)

AB Girl

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Hello
Jul 16^th, 2013 at 1:47am

Hello there.
A month ago I was woken up at 1.30am with the worst pain I have ever felt. I started pacing around the room not knowing what to do. After less than 15 mins of being awake I knew it was a trip to ER.

I thought I had good pain control after having kids with no meds but not for this pain. I spent the 45minute trip to the ER rocking back and forth trying to focus on what was happening.

The pain was behind my left eye (which felt like it was being pushes out) up to my eyebrow and down behind my cheek. It was also felt like the back of my left nostril had been clawed off. My left eye and nostril were running and my face was sweating.

Within minutes of the doc arriving (had to wait for him to be called out) he had me on O2 and hooked to an IV. After 15 mins and no big change he gave me DHE through the IV. Slowly the pain went.

The doc came back with pages he had printed off the web about CH. He said his wife and daughter were both migraine sufferers so knew about CH.

He prescribed me Zomig to take if I had a big one come back. He said it might not work but as I live far out it may help.

After leaving the hospital the left half of my lips felt numb. Within 48 hour the numbess was the left half my tongue, left half my lips and all the way up my cheek to behing my ear but not my ear. After about 3 week it has shrunk back and is now just the left half of my tongue.

I have had a clear CT scan so they say the headaches must of aggravated the nerve.

Has anyone had this happen...

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Hoppy

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LAUGHTER IS THE BEST MEDICINE

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Perth WA
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Re: Hello
Reply #1 - Jul 16^th, 2013 at 2:11am

Hi AB,
Welcome sorry you had to find us. This is a new one to me
hav'nt read about any one suffering from CH's with those
(numbness)symptons but the beast is known to work in strange ways.
Have you seen a headache specialist to confirm you are
suffering from CH's as there are headaches that mimic CH's,
there is a cluster quiz on the board to the left of this page
you can do to see where you stand, and then take it from
there.

Good Luck, Hoppy.

« Last Edit: Jul 16^th, 2013 at 3:48am by Hoppy »

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Hello
Reply #2 - Jul 16^th, 2013 at 3:19am

Hi and welcome

The symptoms you describe sound a lot like CH, however to be really sure you need to work with a headache specialist as there are quite a few headache types that have similar symptoms. At least you've had a clear MRI so that helps rule out some other things that can cause CH symptoms.

For CH we use a combination of a preventive, something like verapamil, which cuts down how many CHs we get as it hopefully prevents most of them. Then we have abortives available to kill off any CHs that get through. Zomig is one preventive, but there are other very effective ones like oxygen and injectable imitrex.

Working with a headache specialist will get you on a good treatment plan that will work for you.

As for the numbness that lasted a few weeks, this isn't a typical CH symptom. So I'd discuss this further with the headache specialist.

Keep reading up and ask whatever questions you can think of.

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wimsey1

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Re: Hello
Reply #3 - Jul 16^th, 2013 at 8:08am

I hope the zomig helps. If not, there is an injectable sumatriptan. It's imitrex. There is also a DHE nasal spray called Migranal. These can help but should only be used when other means fail. O2, high flow (starting at 15lpm and going higher from there) and a nonrebreather mask should be your first line abortive.

The numbness and swelling persisting reminds me of an allergic reaction to something. Did any of your docs suggest this might be the case? That would important to know if the DHE caused an unwanted side effect. Let us know how you make out. Blessings. lance

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Potter Ex Member	Re: Hello Reply #4 - Jul 16^th, 2013 at 9:41am You had one headache and the Doctor diagnosed you with CH? Potter
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Guiseppi

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Re: Hello
Reply #5 - Jul 16^th, 2013 at 11:14am

The down side to the ER is they are of a "get-em-en and get-em-out mentality. It sounds like you were fortunate enough to get an ER doc somewhat knowledgeable in headache disorders because of his own family. A lot of what you describe does sound like CH, but it's certainly not enough to justify a diagnosis.

A single trip to the er and a cat scan is not sufficient diagnosis criteria for a sudden onset of severe head pain. It sounds like you live out in the country a bit, but you need to get a referral to a headache specialist neurologist. GP's and even most garden variety neuros just don't have to experience to diagnose and treat complex headache disorders. If it does turn out to be CH, don't despair, there are numerous treatments available to make life quite liveable! Wishing you speed in getting a diagnosis and some relief from your pain.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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