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outofcontrol

FAMILY TRAITS

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I was wondering about my family history of cluster ha's. My neurologist stated someone in my family had to have these ha's in the past. After speaking with my Mom she said her Dad used to have these ha's just like mine when she was a young girl. They would last several months and go away for a while only to return again. Well I have them, my brother has them, and a cousin on the same side of my family has them--but he has  auras also. The strange thing is we are all color blind. Any input on this??? Do many CH sufferers also have color blindness?? Strange

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Color blindness, at least red green version) is an X linked recessive which basically means a male only phenomena passed to the person by the mother. .  It affects about 10% of the male population. Personally I am red green color blind.  I have an uncle who is now 80 and has a cluster background.  He is a paternal uncle so the color blind genetic link would not apply.   I have no idea how folks survived these attacks without O2, imitrex or other modalities.  I can state with unequivocal confidence my tenure on this  planet would have ended log ago without available treatments.  As we get a better understanding of the human genome I suspect it will be possible to get a better handle on the genesis of this affliction.  Most likely it will prove to be multi-factorial with co-factors.  If it were simple it would have been solved long ago.

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I've asked family members about others that could have had this and nobody seems to know of anyone ... except they did say my uncle complained of headaches often. He said it came from the work he did painting / refurbishing great big water towers way up in the air. He always blamed his headaches on chemicals and he didn't want any other family members doing the kind of job he did. He died before I could ask him about his headaches. Other than that, I have 2 nephews that complain of migraines, not clusters. No one else seems to be bothered by headaches at all....thank goodness. I Pray that my son won't have to deal with these things too. He's 23 now and so far, no headaches.

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my old man use to get terrible migraines when i was growing up,my biggest fear is any of my 3 kids getting anything close to this shit we have to go through,i would not be able to handle the very thought of them going through this horrific disorder.

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My daughter has CH.  Six years ago, people here helped us learn how she could manage it, after she had been misdiagnosed and mistreated for years by some "highly trained" neurologists.  That's why I'm here -- out of gratitude; to keep learning as much as I can; and to try to help keep anyone I can from going through what she went through.

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My daughter has CH.  Six years ago, people here helped us learn how she could manage it, after she had been misdiagnosed and mistreated for years by some "highly trained" neurologists.  That's why I'm here -- out of gratitude; to keep learning as much as I can; and to try to help keep anyone I can from going through what she went through.

 

Would you mind sharing how old was she when she started to get CH and how old is she now?

Is she getting better?

Is she ever posting about CH?

it is just too painful to read about this, when parents have to see their kids going thru this,

 

 

Seeing grown men and women  going through this is horrendous, seeing your kids must be even worse, no matter the age.

 

I'm almost 40  ,almost 10yrs of CH.  

My parents don't even know I have CH, I just tell them it's a migraine.

If they were to look it up on youtube and saw some videos, their heart would brake.

I dont ever want any of my friends or family  see me with  CH attack

 

best regards 

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You're not alone in not wanting anyone to see you having an attack.  Hiding attacks from friends and family, even from people they live with, is a very common characteristic of people with CH. 

I sat with my daughter night after night in the early days, when she had nothing at all to abort an attack.  She chewed on coffee beans.  Well, she had "oxygen," but her neurologist had prescribed a concentrator and nasal cannula, so she believed oxygen didn't work for her. 

She can't take verapamil because her blood pressure is already low, and she (like me) has terrible reactions to steroids, so they are out.  She also reacted very badly to Imitrex at first, but she can handle it better (still not great) with the split injections. We didn't know then about energy shots, which sometimes help her.  I was amazed by her bravery then, and I still am now.  She really is a hero to me, and yes, my heart does break just thinking about what she goes through.  No one who hasn't seen an attack can come close to understanding the horror, and even those who have seen attacks can't really understand.

She was in herr early twenties when they got severe enough to see a doctor, although I believe she had them as an infant and she had had forms of them long before her twenties.  

Her first diagnosis was gluten allergy.  Then tooth problems. Then, amazingly, trigeminal neuralgia, which neurologists continued to say.  I actually diagnosed her myself, when I was watching a youtube video about surgery for trigeminal neuralgia and the doctor giving the video said something like, "First, let me tell you about some things that are not trigeminal neuralgia," and described the symptoms of CH. 

All this is of course a familiar story, in one form or another. 

She has tolerable cycles and days, and better ones, and worse ones.  Oxygen works well for her on 90-plus percent of her attacks, and she has trex for breakthrough attacks.  She had to stop doing the full D3 regimen because of other health issues.  She's a brilliant young woman (a very successful lawyer before the CH wrecked her career), and she's not willing to be made dopey by drugs like topamax and gabapentin.

This is more than you asked for, but I needed to say it all.

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Thanks for sharing , I wish you and your family  the best. 

I'm sure this will help sooner or later someone,when they read this.

As painful as it is to read,  it will give new  hope to someone who think ,they can't go on anymore.

 

Best regards, 

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