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        Cluster Headache Help and Support >> Cluster Headache Specific >> New Member - About my CH & my partial success 
        
(Message started by: prabuinit on Dec 19th, 2007, 11:29am)
Title: New Member - About my CH & my partial success
Post by prabuinit on Dec 19th, 2007, 11:29am
Hello All -
I just want to share my CH experience. I'm from India and now in NJ, USA.

A
It all started when I was 16. It used to start @9A.M thats when my Math class start. I always used to think that the subject & the teacher induce the headache. I did not inform my parents about this as the pain was bearable. The headache occurred at same time every day for almost a month.

B.
At 20, I met with doctor and he diagnosed it as Sinus bone over growth. And he said, this extra bone growth had cut off proper ventilation and a proper oxygen supply leading to sinus headaches. He operated & cut the extra bone in my nose. All was well for next 1 yr and the monster came again heavily after that. 18 months of remission and 4-6 weeks of intense one side pain.

C.
At 25, I met with a specialist doctor at Ear & Nose. He gave me a medicine (I forgot the name) and it immediately stopped the cycle. I was all happy and thought I have the control of the monster. Promptly after remission period, it reoccurred and this time, the medicine did not help. I was advised to meet with a Neurologist. He diagnosed it right and he informed me that it is a variant of migraine and gave me medicines. The medicines, all it did was, postponed the every day attack to 12 noon from 9A.M.

D.
At 27, I moved to Pittsburgh, P.A, U.S, & monster was up again. And here I was diagnosed as CH. I started off with Verapamil and Prednisone. No change.
When my cycle was ending, I came up across a forum where a lady claimed that when she rode bicycle while in pain, the pain lessened and attack stopped.
I tried brisk walking around my office. Pain lessened. I remember doing for 3 or more times when headache occurred.

E.
Now at 29, monster reappeared and it is 5th week now. I tried 2 types of Triptans and Indomethacin. All I see this time is the pain not regular in time and reoccurs several times a day. The shadow pain appears in the morning and stays till evening. Last week I remembered of the brisk walking and started trying it. I walk for 10 minutes while in pain (outside temperature is 27-34 F), pain lessens and stops either immediately while walking or stops exactly in 10 minutes. Sometimes I see it reoccurring exactly in 90 minutes (thought pain is bearable & mild). I have been doing this for past 10 days and feeling better now.

Brisk walking in fresh open space for 10 minutes while in pain is a kind of relief for now. This subdues the pain but does not stop the cycle. So far, I see this being better than any medication. Less pain & less time.

I pray God that one day we will all get the right medicine that kills this monster for ever.

Let us know your success story.
Title: Re: New Member - About my CH & my partial succ
Post by Linda_Howell on Dec 19th, 2007, 11:52am

 Please look into this:

   http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Indomethacin isn't the medication of choice for Clusters.  
Title: Re: New Member - About my CH & my partial succ
Post by vietvet2tours on Dec 19th, 2007, 12:05pm

on 12/19/07 at 11:29:30, prabuinit wrote:
Hello All -
I just want to share my CH experience. I'm from India and now in NJ, USA.

A
It all started when I was 16. It used to start @9A.M thats when my Math class start. I always used to think that the subject & the teacher induce the headache. I did not inform my parents about this as the pain was bearable. The headache occurred at same time every day for almost a month.

B.
At 20, I met with doctor and he diagnosed it as Sinus bone over growth. And he said, this extra bone growth had cut off proper ventilation and a proper oxygen supply leading to sinus headaches. He operated & cut the extra bone in my nose. All was well for next 1 yr and the monster came again heavily after that. 18 months of remission and 4-6 weeks of intense one side pain.

C.
At 25, I met with a specialist doctor at Ear & Nose. He gave me a medicine (I forgot the name) and it immediately stopped the cycle. I was all happy and thought I have the control of the monster. Promptly after remission period, it reoccurred and this time, the medicine did not help. I was advised to meet with a Neurologist. He diagnosed it right and he informed me that it is a variant of migraine and gave me medicines. The medicines, all it did was, postponed the every day attack to 12 noon from 9A.M.

D.
At 27, I moved to Pittsburgh, P.A, U.S, & monster was up again. And here I was diagnosed as CH. I started off with Verapamil and Prednisone. No change.
When my cycle was ending, I came up across a forum where a lady claimed that when she rode bicycle while in pain, the pain lessened and attack stopped.
I tried brisk walking around my office. Pain lessened. I remember doing for 3 or more times when headache occurred.

E.
Now at 29, monster reappeared and it is 5th week now. I tried 2 types of Triptans and Indomethacin. All I see this time is the pain not regular in time and reoccurs several times a day. The shadow pain appears in the morning and stays till evening. Last week I remembered of the brisk walking and started trying it. I walk for 10 minutes while in pain (outside temperature is 27-34 F), pain lessens and stops either immediately while walking or stops exactly in 10 minutes. Sometimes I see it reoccurring exactly in 90 minutes (thought pain is bearable & mild). I have been doing this for past 10 days and feeling better now.

Brisk walking in fresh open space for 10 minutes while in pain is a kind of relief for now. This subdues the pain but does not stop the cycle. So far, I see this being better than any medication. Less pain & less time.

I pray God that one day we will all get the right medicine that kills this monster for ever.

Let us know your success story.


     Oxygen is the right meds.It does away with them restless feets.

                     Potter
Title: Re: New Member - About my CH & my partial succ
Post by Guiseppi on Dec 19th, 2007, 12:31pm
You need to get oxygen, it'll beat them down faster and without the side effects you complain about.

When you do your brisk walks, especially when it's good and cold, try deep breathing, inhaling thru your nose. I've had some limited success reducing the pain of a hit by deep breathing at the air conditioning vents of my car or even putting my face in the freezer. Ice cold air thru the nasal passages seems to help.

But all of that PALES compared to the almost instant relief I get from oxygen. It's truly been a miracle drug for me.

Guiseppi
Title: Re: New Member - About my CH & my partial succ
Post by lorac on Dec 19th, 2007, 1:52pm
a big AMEN to that.... o2 rules!
Title: Re: New Member - About my CH & my partial succ
Post by vietvet2tours on Dec 19th, 2007, 1:54pm

on 12/19/07 at 12:31:33, Guiseppi wrote:
You need to get oxygen, it'll beat them down faster and without the side effects you complain about.

When you do your brisk walks, especially when it's good and cold, try deep breathing, inhaling thru your nose. I've had some limited success reducing the pain of a hit by deep breathing at the air conditioning vents of my car or even putting my face in the freezer. Ice cold air thru the nasal passages seems to help.

But all of that PALES compared to the almost instant relief I get from oxygen. It's truly been a miracle drug for me.

Guiseppi


       http://www.steelheader.net/ubbthreads/images/graemlins/yeahthat.gif

          Potter
Title: Re: New Member - About my CH & my partial succ
Post by prabuinit on Dec 20th, 2007, 9:34am
I will ask my doctor about this. I see big oxygen cylinders for this treatment. How do you manage this while in office? If it was small like a water can, I could carry with me in the car and use this when monster attacks. I don't know about this. Can you eloborate, please?

Thanks.


on 12/19/07 at 12:31:33, Guiseppi wrote:
You need to get oxygen, it'll beat them down faster and without the side effects you complain about.

When you do your brisk walks, especially when it's good and cold, try deep breathing, inhaling thru your nose. I've had some limited success reducing the pain of a hit by deep breathing at the air conditioning vents of my car or even putting my face in the freezer. Ice cold air thru the nasal passages seems to help.

But all of that PALES compared to the almost instant relief I get from oxygen. It's truly been a miracle drug for me.

Guiseppi
Title: Re: New Member - About my CH & my partial succ
Post by Linda_Howell on Dec 20th, 2007, 10:28am

 The tanks that most of us use is called an E-tank.  It is about 30 inches tall and about 15  inches around..  It will come  on a portable stand that you can wheel around.  It certainly will fit in your car.   You CAN get smaller ones but they don't last very long if you're getting hammered.

Hope this helps.


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