Hello, my name is Cecile. I am new on here. My husband has suffered from cluster headaches since he was 18, he will be 33 in July. He has been chronic now for almost 3 years! They mainly come at night, that's when he screams and begs me to kill him and end his misery. No break for so long, he is so strong. He takes Verapamil, the capsules, and they work somewhat. We have health insurance finally and are in contact with a good doctor that we r hoping will then refer us to a neurologist and neurosurgeon. A friend of mine is a nurse and said this neurosurgeon is the best and has done cluster headache surgeries! We have not been able to get Oxygen because the free clinic we went to, the doctor was not comfortable prescribing it! What a moran! Oxygen is os expensive and no one knows about clusters or cares! I just wanted to tell sufferers that I am so proud of all of you for keeping going, I do not know your pain of course and you are the strongest people out there. I am proud to be with my husband and I promise him he will have a normal life one day with no pain, even if I have to sell my soul.
About the surgery, I have to do more research I know but as anyone done it?

Hi....welcome to the forum.

Surgery is not a good option at this point.  We never would have considered it at all and hubby was chronic for 15 years.  There are sooooo many things to try first....Oxygen being #1.

Study all you can.  There is a multitude of information here and on the OUCH site...buttons on the left.  Read all you can....knowledge is power.  If you ask questions we'll do the best we can to answer.

Good Luck and remember...there's always someone around to help.

Jackie

Oxygen is not that expensive, even without a doctor's prescription.  Welders O2 does just fine.

Carolyn

Yes Oxygen is the best. I was the only one working for quite some time and we could barely afford rent and food. But now my husband is on my insurance so we will have oxygen soon. Believe it or not, it's not that cheap. But it's coming thank God!

Hi Cece, glad to hear you have o2 coming for your husband. Make sure you read the oxygen info and understand it so it is used properly. It is important that it is used correctly to be effective.

Always nice to hear there are supporters like yourself out there. Your husband is a lucky man.

Wishing you both all the best. :)

Iddy

Thank you so much. He is very lucky but I feel lucky too. He truly is a good man and I am so proud of him. For the past month the CH are coming on stronger, mainly at night, so he hasn't slept much. He helped a friend yesterday with a roofing job, though I tried to gently stop him, so then came home exhausted and the pressure started of course! I am not much for "narcotics" but I had a xanax a friend had given me for rainy days and I gave it to him, it put him out and thank God he slept through the night. He was so scared to lay down and cried. What a nightmare! He just about had a nervous breakdown he was so beat! My poor baby, I wish I could do something. But like I said we will never give up. Friday the 2nd we have an appt with a new doctor that is supposedly  one of the best in our town so we'll see. Lots of love to everyone and don't give up, you are not alone!!! xoxo :)

Good luck with the new doctor and keep us posted. :)

Quote:

neurosurgeon is the best and has done cluster headache surgeries! We have not been able to get Oxygen because the free clinic we went to, the doctor was not comfortable prescribing it!

This kind of mentality just makes me so angry.  One medical professional is willing to do surgery on his brain...and another is "UNCOMFORTABLE  prescribing  oxygen.  Unbelievable!!!     >:( >:(

Surgery is a very last resort for folks with intractable CH and even then is done very rarely.  Hope you can get 02 soon. It will help your husband so much.  Keep us updated, O.K.?

Hi Cecile,

Thank you so much for taking such good care of my cluster brother.  You supporters are the rock to which we cling in the storm.

[smiley=hug.gif]

-Dennis-

I am a refractory chronic and even people who have tried literally every prevent under the sun and have failed will tell you that surgery is the LAST resort and then some.

By the sound of it your husband has not exhausted all avenues yet and it is imperative that he does before you get set on a path that will discard "nearby" treatments that will ease his pain quicker and at much less risk than unproven, irreversible surgery with universally very high failure rates.

Port of call No.1 is Oxygen and a proper headache specialist that sets your husband on an informed and structured path to longterm prevention for chronic sufferers. Chronic CH requires a very different approach to episodic CH treatment and what may have worked for your husband when he was still episodic may by no means work once the condition becomes chronic.

I find that, whenever my arsenal of prevents doesnt work (and they often don't), my O2 fails and I too dont know where I could possibly go next other than down, I have found it very helpful to go on a course of prednisone when all else fails.

Steroids are obviously NOT a long-term or preventative but a transitional treatment only and you must discuss their use with your neurologist. They can't be used regularly, but for me they are like a "Pause" button that I use 2 or 3 times a year to regroup. They can become increasingly ineffective over time but for me they are buying me 2 weeks, sometimes 3 of no pain whatsoever and sometimes more effective prevents thereafter. It may not be the best choice for your husband, but since he is clearly emotionally very distressed right now, you may wish to discuss it as an option with your doctor for the period it takes you to develop your longterm treatment strategy. If he is otherwise healthy, prednisone should generally be a fairly risk free proposition.

These couple of weeks can go a long way in my experience. Without the pressures of the next hit around the corner and nights of good sleep you can work on the next treatment strategy and run in new medication to target the beast, get your life back together the best you can and importantly build up hope again. I have just come out a very dark patch and am excited because there is 3 or 4 new (non-invasive) things that I want to try in the coming weeks and months to give the beast a good run for its money.

We are admittedly loosing a lot of battles against the beast, but the war is only lost if we give up hope.

I wish that your husband is better soon. He sure is lucky to have you.

You can buy a nicer mask (MAKE SURE HE GETS A NON-REBREATHER!!!!) and your own regulator for under $100 total if you look in the right places.  O2 tanks shouldnt cost too much.  I was paying for the rental of the regulator and that is what cost so much until I bought my own.

Good luck!

Oh man. Thank you all so much for all the information! You are amazing warriors! So no surgery hey? We kind of figured. I am saddened in a way, we were hoping that would be the hope for no more pain and maybe start having babies! But we are hopeful and you are all very correct, since the medical system is so pathetic when there is no insurance, he has never been properly followed by a neurologist so it has really been a nightmare. Through my work now we have bluecross blueshield and I pay $400 a month!!! But I must because it may sound crazy I believe I was put on Earth to be my husband's angel and I will do all it takes to provide him a somewhat normal life with as little pain as possible!
About the oxygen, he had it previously for quite some time and truly loves it. It doesn't always work but most of the time it helps. He has kept the mask that works for him, he cant use the tubes in the nose, makes the pressure worse. Right now he always keeps some tissue in his left nostril that way no air comes through there and brings pressure. It's kind of "sad cute" when I make the bed in the morning, I always find his little pieces trough the bed and the cats are always excited to find them and play soccer! lol
About the prednisone, that works great for him and it usually is given to him as a taper to start the verapamil.

So april 2nd is the doc appt then we will get the referral to the neurologist! It's so complicated but must be done. He has waited, not by choice, for almost 15 years to get great medical help, so we will be patient.
I will keep everyone informed. Again thank you to all for being so amazing!

I wanted to add something. As anyone tried to reach Oprah or Dr.OZ or any people like that to raise awareness on Cluster Headaches or make it a disability? Just curious. If not, I think I may try, I'll try anything to deliver all that suffer from those F%#$@% beasts!!!

Love to all! DONT GIVE UP EVER!!!!

OK Sweetie....you're on the right path.  02 is the bomb and will help hubby greatly...that's my bet.  Especially with a proper mask and high flow rate.

Oprah...it's been tried...lots of time.  As have most of the other talk shows.  Can't tell you about Dr. OZ but go for it if you want....what can it hurt. :)

Stay after it, Sweetie....you're doin' good!

Love & Hugs,
Jackie

thanks for being so supportive with your husband!!! about contacting the talk shows I and my sister(my biggest supporter) reached out countless times with NO response! It doesnt mean that you or anyone else shouldnt! The more exposure the better! Again thanks again!!
Anthony

I can't help myself for saying this and forgive me... Obesity is a disability right? Does is hurt??? I'm sorry, I am so upset with our medical world and it ain't gonna get better! What a mess!
I apologize for my negativity but it's so frustrating and I'm not even the one that suffers.
I hope the doctors we are going to see will be good!

Love to all :)

hi Anthony! makes sense they r not getting back, it's not commercial enough...money money money!!! It's a sad world sometimes. I'll give it a shot I suppose!
Thank u for replying and bless you and your sister!

love :)

I apologize for my negativity but it's so frustrating and I'm not even the one that suffers

Oh Cece.....your head may not hurt but you suffer too.  I can tell how much you love your husband and I know you suffer right along with him.

You're a good supporter....you two are lucky to have each other :)  Something tells me you all will be just fine.

Here we go with the cliche sentences that must have been written on here a million times but finding this site has been to me like winning the lottery! I am learning so much!!! Thank you to all, very sincerely! We are all Jedi knights trying to restore peace in the heads!!! Sorry I love Star Wars! :D :D

Well, ttyl y'all! love love love & lots of strength!

You may want to print the below and take it with you to the new Dr.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Most Doctors and Neurologists are not aware of modern O2 use for CH.

Good Luck, Don

Thank you all again :) love love love to all

Yay for redbulls! Wow, I am amazed. He had 2 attacks yesterday, popped a redbull as soon as he felt the pressure and after a few minutes the beast retreated! Yay! I pray it keeps working. Thanks guys! And friday is the doc....woohoo!
Love to all :)

That's great news Cece, hang in there. I know everyone else has preached it but oxygen, used correctly and at a high enough flow will make a difference. When I hear my husband clanging the tank I go get him the redbull and ice pack. It's our partnership in getting him through. And then, 5-10 minutes later, he's back to life (such as on Thanksgiving, finish carving the turkey!)