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ChefChris

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Posts: 245
Virginia Beach, Va
Gender: male

a few questions
Nov 7^th, 2008 at 10:43am

1. Does everyone smoke ciggaretts?
2. Does anyone have family with migraine or any other nero disorder?
3. Is anyonelse afraid to leave the house during a cycle?
4. Anyone been told its a "made up illness"?
5. Tried lidocaine patches on the areas that hurt?
6. Ever had a cycle end for good? (please give me some hope!!)
7. Does anyonelse get muscle spasm in their back, shoulder blade area?
8. Find relief in the freezing cold?
9. Ever heard of thorazine, benadryl, and magnesium IV to abort a HA?
10. Lost a job because an employer didn't believe/understand the illness?
11. Tried to commit suicide?
12. Lost a wife/husband because they didn't fully understand the illness?

I smoke ciggs, my mom has MS, father migraines, I'm afraid to leave the house because I don't want ANYONE to see me go through that "dance" I do, I put lidocaine patches on my forehead, back, temple and my jaw, my shoulde blade area knots up so bad my girlfriend has to massage my back for the duration of the attack, I LOVE the cold during an attack, was at MHNI, Dr. Saper put me on #9 as an abortive (never worked, just knocked me out for a little while), have had too many jobs to count because not many people have heard of CH, my ex-wife has told me I tried to kill myself a few times (I don't remember any of it, I must have blcked out from the pain), and my wife left me and took my son because she didn't fully understand what was going on. No to mention I was having rebound HA from all the opiates my pain management doctor had me on.
I just want to know if anyone can relate to me or if I'm alone out here.

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life is great clean. thanks NA and rehab. clean date August 4, 2010

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gizmo

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Posts: 522
Germany
Gender: male

Re: a few questions
Reply #1 - Nov 7^th, 2008 at 10:50am

Quote:

1. Does everyone smoke ciggaretts?

yes
Quote:

2. Does anyone have family with migraine or any other nero disorder?

yes
Quote:

3. Is anyonelse afraid to leave the house during a cycle?

no
Quote:

4. Anyone been told its a "made up illness"?

no
Quote:

5. Tried lidocaine patches on the areas that hurt?

no
Quote:

6. Ever had a cycle end for good? (please give me some hope!!)

yes
Quote:

7. Does anyonelse get muscle spasm in their back, shoulder blade area?

sometimes
Quote:

8. Find relief in the freezing cold?

sometimes
Quote:

9. Ever heard of thorazine, benadryl, and magnesium IV to abort a HA?

not sure
Quote:

10. Lost a job because an employer didn't believe/understand the illness?

no
Quote:

11. Tried to commit suicide?

no
Quote:

12. Lost a wife/husband because they didn't fully understand the illness?

no

And to answer your last question: You are not alone!

Oliver

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CH-HELL

Ex Member

Re: a few questions
Reply #2 - Nov 7^th, 2008 at 11:12am

Quote:

1. Does everyone smoke ciggaretts?

I do
Quote:

2. Does anyone have family with migraine or any other nero disorder?

yes
Quote:

3. Is anyonelse afraid to leave the house during a cycle?

not during cycle im chronic, but dont like to go out when I know Im going to get hit.
Quote:

4. Anyone been told its a "made up illness"?

yes/no
Quote:

5. Tried lidocaine patches on the areas that hurt?

no
Quote:

6. Ever had a cycle end for good? (please give me some hope!!)

yes
Quote:

7. Does anyonelse get muscle spasm in their back, shoulder blade area?

yes neck and shoulders I take tizanidine for it
Quote:

8. Find relief in the freezing cold?

yes ice packs are good
Quote:

9. Ever heard of thorazine, benadryl, and magnesium IV to abort a HA?

nope
Quote:

10. Lost a job because an employer didn't believe/understand the illness?

never been fired but I am on medical leave
Quote:

11. Tried to commit suicide?

never tried but have thought about it.
Quote:

12. Lost a wife/husband because they didn't fully understand the illness?

no

And to answer your last question: You are not alone! You are very much not alone.
If you have been to MHNI then why dont you call them and get the meds you need, Dr. Rozen knows about clusters he should be able to help if you where dx there.
Phil

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« Last Edit: Nov 8^th, 2008 at 5:59am by N/A »

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Rolomatic

Ex Member

Re: a few questions
Reply #3 - Nov 7^th, 2008 at 11:22am

1. Does everyone smoke ciggaretts?

Most but not all (I do)

2. Does anyone have family with migraine or any other nero disorder?

No

3. Is anyonelse afraid to leave the house during a cycle?

Yes and no depending on if its under control (when I get hit every 2 hours I sequester myself).

4. Anyone been told its a "made up illness"?

No

5. Tried lidocaine patches on the areas that hurt?

No

6. Ever had a cycle end for good? (please give me some hope!!)

I wish (I hear 55-60 years old in general) so i guess I have 10-15 more to go
7. Does anyonelse get muscle spasm in their back, shoulder blade area?

Yes

8. Find relief in the freezing cold?

No (I like hot packs)

9. Ever heard of thorazine, benadryl, and magnesium IV to abort a HA?

Only Magnesium push

10. Lost a job because an employer didn't believe/understand the illness?

Yes (I know its the reason I keep getting laid off)

11. Tried to commit suicide?

No (sure have thaught about it plenty though)

12. Lost a wife/husband because they didn't fully understand the illness?

No (not yet anyway cross my fingers!)

Gizmo's right, we have each other to lean on. Its like a huge AA meeting where you don't have to hid your feelings on how you feel about your condition for fear of belittlement.

You need to commit yourself to winning the fight or you will surly be overtaken by it!

I hope you can get to a doc soon and at least do a prednisone taper for immediate relief and time to get on a preventative and some oxygen therapy.

PFW’s bud. You will get there and we will help if you let us.

Roland.

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« Last Edit: Nov 7^th, 2008 at 11:23am by N/A »

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AussieBrian

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CH - It's all in your
head!

Posts: 3851
Cairns, Qld, Australia
Gender: male

Re: a few questions
Reply #4 - Nov 7^th, 2008 at 11:23am

ChefChris wrote on Nov 7^th, 2008 at 10:43am:

I just want to know if anyone can relate to me or if I'm alone out here.

You are anything but 'alone out here', Chris. You are now surrounded by a group of friends who know only too well the devastation this condition can cause.

We know it from the inside because we too must endure it.

Too often we've seen relationships dissolve because of this, jobs lost and hopes trampled, and we do our damnable best to help in any way we can.

One way we do this is by offering to share our joint knowledge, free for nothing, with anyone who seeks it. For knowledge is power and this is the only way to slay the dragon.

Just as an example, every question you've just posed has been raised and discussed in quite recent times. Often causing great heart-ache for those involved. Have a good look around the boards, educate yourself, and you'll see very quickly that few holds are barred here.

Wanna know more about your opiates? Just ask our good friend Svenn. If dark thoughts of suicide are crossing your mind more often than you think is healthy we have link after link, phone number after phone number, and we urge you to consider them.

And if you're here to seek a little support, encouragement and the combined wisdom of thousands of people similarly afflicted then you're in the right place.

Just smile, will ya?

Cheers and beers,

Brian down under.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Skyhawk5

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I love YaBB 1G - SP1!

Posts: 1320
Ypsilanti, Mi. USA
Gender: male

Re: a few questions
Reply #5 - Nov 7^th, 2008 at 11:55am

1: Smoke yes but not the reason for CH. 2: No others in family. 3: Leaving the house in cycle is hard to do. 4: Others cannot understand, think about it. 5: I have used lidocaine patches on the back of my head where the nerves run and it does help with shadows. 6: Cylce ending for good is rare and only wishful thinking. 7: Spasms, sometimes. 8: Cold, air is helpful. 9: Thorazine, I've heard of this as a treatment but as an abortive it must be too slow and am suprised Dr. Saper would Rx it. I have met him at Chealsea Headpain inpatient unit, his partner in research was my Dr who has since retired and maybe...
10: I have lost at least 2 jobs to CH. 11: At KiP-10 pain most of us have thought of suicide just thought. 12: If they truly love you this is not possible.

That said, if Dr. Saper did not Rx Oxygen then he is truly slipping. I looked on the OUCH "Sufferer reccomended Doctors" link and saw that there are quite a few in Viginia. You may want to check that for one in your area. Let us know if we can help. Good Luck, Don

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Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Just Plain Carl

CH.com Old Timer

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IT IS WHAT IT IS

Posts: 449
Royal Oak, Michigan
Gender: male

Re: a few questions
Reply #6 - Nov 7^th, 2008 at 2:23pm

1. Does everyone smoke ciggaretts?

I do

2. Does anyone have family with migraine or any other nero disorder?

NO

3. Is anyonelse afraid to leave the house during a cycle?

sometimes

4. Anyone been told its a "made up illness"?

no

5. Tried lidocaine patches on the areas that hurt?

no

6. Ever had a cycle end for good? (please give me some hope!!)

six year remission

7. Does anyonelse get muscle spasm in their back, shoulder blade area?

stiff neck

8. Find relief in the freezing cold?

yes

9. Ever heard of thorazine, benadryl, and magnesium IV to abort a HA?

no

10. Lost a job because an employer didn't believe/understand the illness?

no

11. Tried to commit suicide?

only a passing thought

12. Lost a wife/husband because they didn't fully understand the illness?

no

We are all in the same boat. Glean what you can here.

Never forget " It can't kill ya and eventually it goes away"

PFD's On Ya
JPC

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BMoneeTheMoneeMan

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In remembrance of KingCazman.
RIP

Posts: 2674
Portland, OR

Re: a few questions
Reply #7 - Nov 8^th, 2008 at 1:23am

1. Does everyone smoke ciggaretts?
I do smoke cigs, but I smoke health cigarettes. Lights.

2. Does anyone have family with migraine or any other nero disorder?
Not really much. Dads sister has MS.

3. Is anyonelse afraid to leave the house during a cycle?
Is a frogs ass water tight?

4. Anyone been told its a "made up illness"?
No

5. Tried lidocaine patches on the areas that hurt?
No

6. Ever had a cycle end for good? (please give me some hope!!)
No, but I do sometimes get up to 3 months PF.

7. Does anyonelse get muscle spasm in their back, shoulder blade area?
Not really a spasm in my back, but between my shoulder blades is tight. I do get twitches quite a bit.

8. Find relief in the freezing cold?
Yup. Cold air to breathe and cold water on my head.

9. Ever heard of thorazine, benadryl, and magnesium IV to abort a HA?
No, but I do take benadryl every nite along with melatonin. I think it works well as a preventative at nite. If you do get hit, it keeps the stuffy nose and watery eye to a minimum.

10. Lost a job because an employer didn't believe/understand the illness?
I have lost clients due to it, yes.

11. Tried to commit suicide?
Lips Sealed

12. Lost a wife/husband because they didn't fully understand the illness?
Don't think so. She was a dirty dumpster s1ut, does that count?

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"Fool me once, shame on, shame on you. Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&&

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ClusterChuck

CH.com Alumnus

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The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: a few questions
Reply #8 - Nov 8^th, 2008 at 4:07am

1. Does everyone smoke ciggaretts?
I do, and a lot of us do, but not everyone.

2. Does anyone have family with migraine or any other nero disorder?
My mother had migraines.

3. Is anyone else afraid to leave the house during a cycle?
A lot do, but that is the wrong approach. Live life as you normally would. When you are out living, and you get hit, just step aside, deal with the hit, and then get back to living.

4. Anyone been told its a "made up illness"?
YUP! I was! As a matter of fact, I was transferred to the psycho ward, 29 years ago, when they first started, as the neuro told me "No one can have the pain you are pretending to have, without something showing up on the tests ..."

5. Tried lidocaine patches on the areas that hurt?
Yup, but didn't do much.

6. Ever had a cycle end for good? (please give me some hope!!)
Yes, there are at least two people here, that have gone many years without a cycle. I was told once I hit 50, they would go away ... Here I am almost 60, and they have gotten worse, not better.

7. Does anyone else get muscle spasm in their back, shoulder blade area?
I have heard of it, but I don't get it.

8. Find relief in the freezing cold?
Many of us do find relief in going out in the cold, or applying cold to various parts of the head/neck. But then there are those that find applying heat works best.

9. Ever heard of thorazine, benadryl, and magnesium IV to abort a HA?
Heard of it, but most say that it didn't do much.

10. Lost a job because an employer didn't believe/understand the illness?
I haven't (yet) but others have.

11. Tried to commit suicide?
That is open to debate. Some former members have committed suicide, but we don't know for sure that it was clusters that drove them to it. Most likely it was one of many reasons to do it. Yes, I have thought about it.

12. Lost a wife/husband because they didn't fully understand the illness?
I have not heard of that. There have been divorces that were blamed on it, but in reality there were other more important factors. It was just a lame excuse.

Do those vague answers help?

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: a few questions Reply #9 - Nov 8^th, 2008 at 8:57am Does everyone smoke ciggaretts? I do smoke cigs, but I smoke health cigarettes. Lights.
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