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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Still not convinced

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Still not convinced (Read 1203 times)

ken_russell

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Posts: 15
Toronto, Canada

Still not convinced
Mar 19^th, 2009 at 9:25pm

Just a reminder 48 yr old male.
I haven't been on for a couple weeks. Several exchanges were so helpful.
I did see my new Gp March 9, MRI scheduled March 23. He suggested new referral to a Neuro after MRI.
I have scheduled GP for 2 weeks after MRI for this referral.
As on my previous posts I had the unbearable pain last October. I have not experienced the same pain again. I do have the lingering aching going on. I cannot describe it any better.

It is definitely not alcohol induced as I was away for March Break.

My question is........what is the best definition of what you call "shadows"??

Can they be just outright annoying aching pains on and off with no specific pattern? My initial attack was around my left eye and the majority of the sensations I get now are in the same area.

I know what the pain was like last October and I know that you may say these words I have chosen don't come close to describing the pain.

I am not convinced yet

Any help is appreciated.

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Still not convinced Reply #1 - Mar 20^th, 2009 at 1:09pm Hi Ken, Is the "lingering aching" in the same area as your October attack? Or is this something completely different. I'm not talking about intensity, just location. -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

ken_russell CH.com Newbie Offline Piper Down but not out Posts: 15 Toronto, Canada	Re: Still not convinced Reply #2 - Mar 20^th, 2009 at 4:49pm It is predominantly in the same area. behind and above the left eye. I have been on a few drugs since the first and only hit. My new GP is trying Amitriptyline now It seems to just give me insomnia, I was on Alprazolm prior to that with my old GP. I find now I am just anxious about my next cycle. Thanks for the response.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Still not convinced Reply #3 - Mar 20^th, 2009 at 5:44pm I'm wondering if what you are describing is a shadow. It is a lingering pain that feels like a hit but not as intense. I hope you get relief soon! Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

ken_russell

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Toronto, Canada

Re: Still not convinced
Reply #4 - Mar 20^th, 2009 at 9:10pm

If that is the definition of a shadow then it must be what I am experiencing.

As I said in my initial posts. I was only diagnosed on March 3rd for my "hit" in October.

I went through the gammit of ENT's, Opthamoogist, optomitrists, dental surgeon.

The Neuro that diagnosed it is running a sleep disorder clinic. When he listened to everything I had to say he wrote "cluster migraine" on a sticky note and sent me on my way and said "do you know how to Google", read up on it and make an appointment to come back and we will talk about it.

If this is the way the medical system treats this I am in trouble.

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Marc

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Re: Still not convinced
Reply #5 - Mar 20^th, 2009 at 10:12pm

ken_russell wrote on Mar 20^th, 2009 at 9:10pm:

...................

..................If this is the way the medical system treats this I am in trouble.

I would take the opposite position:

This is an opportunity for you to get the best possible results by being proactive in your treatment. The sad reality is that 90% of the time, walking into a doctors office with CH's and saying "make me better" is a recipe for more needless suffering. There just aren't enough doctors with strong Cluster Headache experience - regardless of what of some of them claim. There are some really, really good one's out there - but not nearly enough.

Invest the effort to REALLY read what is written here on this site. It's a big job, but that will allow you to work WITH your doctor to layout a plan of attack. Almost more importantly, it will help you quickly decide if you need to find a new doctor.......

In particular, become very well versed in the proper use of oxygen therapy as your first step.

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

Marc

« Last Edit: Mar 20^th, 2009 at 10:15pm by Marc »

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MJ CH.com Hall of Famer Offline Posts: 1205 x1\|\|USA\|usa\|299\|85\|MN Gender:	Re: Still not convinced Reply #6 - Mar 21^st, 2009 at 1:07am I agree with Marc You may have gotten one of the best prescriptions by a doctor ever if it is clusters you have. Take full advantage.
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ken_russell

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Posts: 15
Toronto, Canada

Re: Still not convinced
Reply #7 - Mar 22^nd, 2009 at 10:10am

Thanks so much for the advice.
I have an MRI tomorrow. CT scan was "clear" in November and thought an MRI would be a good idea.
Current GP I am working with I have just started seeing.
He won't see me again until the MRI results are in so that appt. is Apr.9.
Not sure why we have to wait for the results, not like I will get to see a good Neuro in a day or 2.
I am still trying to source the foremost Neuros in my area with CH knowledge.
Just to clarify, do "shadows" always come before a cycle?

If it is "shadows" I am experiencing, I am consuming alcohol with no adverse effects. Is that possible?

Another new sysmptom I am experiencing in waking up every night usually between 2:00 and 3:00 a.m for an hour or 2. When I had my pain in October for the 2-3 week period, 80% of the time it woke me up at those times.

When I wake now I stare around wondering if "it" is coming. After telling my GP about the CH diagnosis he prescribed Amitriptyline, which I believe can contribute to insomnia.

Thanks for listening, everybit of info we all receive helps in our own quest.

Ken

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Re: Still not convinced
Reply #8 - Mar 22^nd, 2009 at 11:10am

ken_russell wrote on Mar 22^nd, 2009 at 10:10am:

Just to clarify, do "shadows" always come before a cycle?

If it is "shadows" I am experiencing, I am consuming alcohol with no adverse effects. Is that possible?

When I wake now I stare around wondering if "it" is coming..

Hi Ken.

No shadows do not allways come before a cycle, though the majority do indeed have some forewarning that somethings not right. It may be as a distinct pain or simply strong thoughts of something to come.

Alcohol affects the majority of clusterheads but not all. It is still reccomended to avoid alcohol if a cycle is suspected. You as a semi newbie may find in time that alcohol has a greater effect than realized on a cycle.
Most can drink what they wish out of cycle. For the most part I cant drink period without dire consequences.

"When I wake now I stare around wondering if "it" is coming"
If this is the first thought upon awakening then this too could be considered a shadow.
Hope not.

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