I'M SCARED OUT OF MY MIND!!!!

I'm scared out of my mind for my husband. He tells me he feels like a drill is being drilled through his head. Sometimes his limbs will go numb or he'll even pass out. Once he was driving and his legs wouldnt move andhe crashed!! HE COULD HAVE DIED!
     Once he told me he was in his barn banging his head against the wall. And another time he lost his sight in one eye.
     What do I do???!?!? I DON'T KNOW WHAT TO DO!!
     I want to be there for him and support him. All I know to do is show my love for him and try to comfort him when they hit and help him relax, but IDK if I'm hurting him when i try to massage his head??????
     To all thos out there that r in my shoes..any suggestions?? and to all those with CH..what would u want me to do??

PLEASE!! ...I cry myself to sleep sometimes...i need help..

Hi K.
Sorry you have the need to be here but welcome to the site.

Could you give us some info. on what you all have tried....prevent. meds, abortive meds. 
Is he using 02?

I know you're in a rough spot but there is help.  I'd suggest reading all the info. you can.  There are a lot of things that help.  Educate yourself....that will be your best defense.

Get hubby here too.  Talking to other sufferers is beneficial. 

Let us know how you all are doing.  There are better day ahead....I promise.

Big hugs,
Jackie

K,

All of us who have CH feel that "drill inside the head" pain.  A lot of us are head bangers.  I've gone through so much dry-wall in the last 23 years it has kept Lowes in business.   That said....numbness in the legs causing one to cause an accident isn't a symptom of this condition and I expect he has another problem there.

First...relax.  Deep breaths.   Get him to a Neurological Dr. for both his numbness as well as his CH.
Second...Do not touch him when he is having an attack.  If someone touches me they'd better be prepared to be injured.  After the hit when he is better, then give him a massage but only if he wants it.

I don't know if money is a problem or if you have Ins. but he really needs to be seen by a professional.  That is something you can look into right now. 

What you can do in the meantime is buy him some of those energy drinkls with Taurine in them.  I open one in the morning so I can drink it more comfortably later in the day.  Too much carbonation makes it hard for me to chug it at the 1st. sign of a hit.  Strong coffee works also.  If he doesn't have oxygen yet, look into that.  He will need a script for it.  THAT one thing alone is a blessing to so many of us.   If he can't get 02 for a while...tell him to sit in front of an AC vent and hyperventilate. Sounds crazy, I know..but tell him to do it anyway.   ;)

Linda

K, echoing what Jackie and Linda said, I know what you mean on how frustrating it is to know your husband is suffering and it seems so helpless.

A good neurologist can help your husband with a routine for dealing with CH. He needs an abortive, and preventatives. My husband, when a cycle starts, takes a predisone taper, and lithium. When he gets hit, he uses oxygen and drinks Redbull. He has used imitrex in the past but is trying not to use it anymore.

I agree with Linda that the other two symptoms you mention are not something my husband has experienced and suggest you visit with his doctor to determine the cause of these issues.

Good luck - we're here for you.

Christy

best advise i could give is try not to be scared. i never liked how my attacks effected the people that care about me. your on the right track by being here. your best defense is to research the hell out of this condition. if you come across something thats questionable post it no matter how stupid you think it is. keep in mind many of us have been where you and your husband are and we got through it and so can you. keep us updated ;)

Congratulations on being here for him.  This is a great 1st step to helping him.  In my opinion, the best things you can do for him is research on this site to better understand everything and anything your brain can absorb.  Print off info to share with his doctor.  Get him on here to ask questions, seek advice and research present info and over 10 years of archived posts.  When he is suffering from an attack, you might consider just leaving him alone, unless he asks for you to be there.  Personally, I absolutely HATE when ANYBODY is near me when I am suffering through an attack and even worse when somebody is talking to me, questioning me, touching me, etc.  You taking the time to inquire on this board shows me that you care and love him and whether he says to you that he appreciates it or not, he does feel comforted knowing you show genuine interest in helping him.  Please keep us updated, we are here for BOTH of you.

thank you all so much! Everything you have told me has helped imensly. He has tried using o2 and he said it didn't help so he doesn't use it anymore. This past summer is when they got to the worst it could possibly be, and he went to 3 diffferent neurologists. It seemed like he was always in the hospital. I couldn't be there with him then because my grandpa was having a hard time too so I had to take care of him... but, as far as I know the only thing he takes is pain killers whenever he gets a hit. AND now he's gotten so many in a row, that whenever he went back to get a new prescription they denied it because they said he was addicted! I wanted to scream at that doctor! He should come live at my house and see for himself if my husband is faking the pain. I wanted to cry when they said that, because now i have to see him suffer worse.
He heard from another doctor that nicotine helps prevent the headaches? Is this true? Has anyone heard this? because if so I'm gonna go buy some nicorette. Anything that could help. My husband said he's tried all the preventatives - o2 and all the meds u all mentioned and it didnt stop them from coming. whenever he gets a hit he said all he can do now is sit in a cold, quiet room, and wait til its gone..since they won't prescribe him meds. They said they won't until after this summer. ugh! He drinks cafffeine in the morning too, I shouold try getting an energy drink though maybe that would be better than coffee or pop.
   I want to ask a doctor about maybe some type of neuro therapy?? Has anyone heard of any therapeutic treatments? I need to talk to his neurologist I know, but he's 2 states away, and I wasnt' there when he went. My husband tells me not to worry so much, but I can't just do that. I know he doesnt want me to be in pain because of this so he's just trying to be brave, but I also think he fears he'll have to get brain surgery and is trying to avoid it...if he needs to though, then he needs to. I'd rather avoid it also. Has anyone out there had surgery for this? Is there such a solution??
ANY HELP would be greatly appreciated! THANK YOU TO ALL THAT HAVE REPLIED!! Your advice has definetly helped A LOT!   

AND you all were right, when I told him i goton this site he seemed very happy. I'm glad you all can be here for us :) can't tell you how much i appreciate it!

right now he uses oxycodone to stop the pain when he gets a hit..or whatever he has left. like i said, they wont renew his prescription til July because they say its for his own good!  :'( yeah okay! i hate watching him in pain and not being able to do anything.

meanwhile i just pray every day that he doesnt get a headache.

I know ya probably don't want to hear this, but those narcotics are not the way to go. They can add some serious issues to the all ready horrible CH. I should know I had a problem with them a few years ago before I found out what CH was, and how to treat it. Be careful when using pain killers; the addiction factor is high, and rebound headaches are quite common.

I hope y'all can get to a GOOD neurologist. All of the advice you've been given is quite sound. I would take it all in as quickly as possible and run with it. Read everything you can on this site, and educate yourself for your next trip to the doctor.

In the meantime, get some energy drinks, frozen peas, and pad the doorways and floors (I too am a headbanger) just kidding. Hang in there!

You are very AWESOME for supporting your husband, and he is one seriously lucky guy to have you for that. I very happy y'all found us, but oh so saddened that you had to. Pain free days.

Eric

The pain killers are NOT a good treatment for CH, in fact they can make it worse. (not counting addiction). He needs to look into the proper use of Oxygen for CH.

Also meds like Imitrex injections, not as bad as it sounds, to abort CH. The pill form is not recommended. For preventatives; Verapamil, Lithium, Topamax, etc. Not narcotics.

Limbs going numb and passing out are not CH symptoms, but maybe signs of overuse of pain meds. I know how hard this can be and have been through the pain med routine myself, so I can say they didn't work for my CH.

Please look into what is being said here. Most Dr's are not up on the proper treatment of CH. Oxygen used properly is pure magic for most of us.

Don

Numbness in the legs are a very definate symptom of cluster headaches for a small minority of sufferers, I am one. My right thigh often feels completely numb as well as occasionally the right arm. If I didnt know better I would think it were a cardiac issue but its not, its the nerves they seem to just shut off in sections of muscle.

This numbing symptom can occur during or separate from an attack lasting the same timeframe as a CH hit.. Ch can affect the larger central nervous system in strange ways.

If feeling returns after a relatively short period of cluster time then its most likely a symptom of CH.

Funny a doctor would mention nicotine.

Nicotine in my experience doesnt prevent a headache at all, what it can do is hasten the recovery process at the tail end of a hit by releasing certain associated chemicals (which I cant recall now due to just coming off a hit) in the brain stem.

Like others said Oxycodone wont stop the pain of a hit and I suspect your sufferer will say the same. Narcotics will make you feel better between the hits but can cause a muddy effect of pure pain as it spikes up and make it really nasty to deal with. No meds are better than narcotics for most.

The best medicine is to commune with the folks here as you are, they have many methods, meds, and wonderfull ideas to help. And help you will find.

Patience and caring are a powerfull thing,
Hang in there. Let him be your quide.

Everyone is pointing you in the right direction. The narcotic thing is not the way to go. Once the meds wear off the pain will be back, Sometimes worse. I also get the numb limbs when the hit tops a kip 9. The pain can get so bad I almost lose consciousness. I strongly suggest him trying oxygen again. It has to be given correctly, Proper regulator, high flow rate, proper mask, and for long enough. Also get on the o2 at the very first sign of an attack. I think your doctor will prescribe meds like Imitrex(injections or nasal spray) or  Maxalt mlt (oral disintegrating tablet). Any med in pill form won’t work fast enough. If he is anything like me the pain can get to a kip 9 in less than five minuets. Hang in there things will get better for both of you. You found the people who know what you’re going through. Peace, Hickory