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(Message started by: lipsey1170 on Sep 2^nd, 2003, 2:24pm)

Title: I am feeling helpless trying to help!
Post by lipsey1170 on Sep 2^nd, 2003, 2:24pm

Hi Everyone,

My boyfriend suffers from Chronic CH for the past 8 years. Over time he has been on Topamax, , Inderal, Imitrex (oral 50mg, then increased to 100mg), Maxalt, and Verapamil. He is currently taking Lithium, Imitrex Injections, Verapamil and Oxygen. The only thing that seems to work are the injections, but you can only take one a day and he has to decide which headache is the absolute worst in order to take it. The downfall is 10 to 15 minutes later....the CH is back. He underwent Gamma Knife Surgery this past May for the Chronic Cluster Headaches. The surgery was NOT a success. The headaches are stronger and more frequent than ever (waking him up all night long and a frequency up to 12 or more a day). Almost as if it intensified everything. He feels numbness in his face at all the wrong times (it comes and goes). He is now meeting with his Neurosurgeon again this month and another specialist for a second opinon (recommended by his Neurologist) because he feels there is nothing more he can do. My question is to any of you that has come this far after no relief......what is left to do? They said he may be put on permanent disability....HE IS 32!!! How can that be! This has been the worst thing I have ever seen anyone suffer from in my life. It is disabling. I can't ever imagine anyone living like this for the rest of their lives. Does anyone else have any information or recommendations that he could try? I feel so helpless trying to help him.

Girlfriend of a sufferer

Title: Re: I am feeling helpless trying to help!
Post by judyw on Sep 2^nd, 2003, 2:43pm

Welcome, I am sorry your friend is having such pain, have you checked out all the links to the left? There is so much information here, especially on OUCH...Each of us manifests in different ways, so the trick is in finding the right combo of medical support...There is still lots not on his list, so there are many more things to look into...Has he checked out this site? Maybe he could share more about time frames and dosages...Sounds like his Neuro is trying to work with him, so lets see how we can help...Thank you for supporting him so well...

Title: Re: I am feeling helpless trying to help!
Post by lipsey1170 on Sep 2^nd, 2003, 3:14pm

Hi Judy!

Thanks for the response. I haven't looked at OUCH yet. I will do that right now. I am new to the site as of today and I am checking everything out. It is wonderful here! My boyfriend does not have access to a computer, but we live together so I have printed off at least 100 pages today to bring home to him. All of this is so helpful. I just looked at some info. from the last person who responded about Cluster Busters and Psilocybin Treatments....it scared me....and I don't think it is legal here in CT. I know anything is an option for him at the moment, but he is trying to get off medication rather than taking it. And I don't think his Neurologist would ever prescribe something like that...(but to the person who sent it...thanks anyways....all information is helpful to us!) The surgery was unsuccessful so far, but there is another surgery where they insert electrodes underneath the skin (something to that effect)...the doctor was trying to explain to me....but I was so upset about the last surgery that I barely heard anything he was saying. The doctors are wonderful, the surgeons are fantastic....it is just the CH's that are fighting back with a vengence. I will check out the rest of the sight...it truely feels like home here!!!

Thanks again.

Title: Re: I am feeling helpless trying to help!
Post by Charlie on Sep 2^nd, 2003, 5:16pm

Welcome aboard and I recommend your looking over all you can as you'll find many ways to cope with this horror. So far, there are ways to handle it but no magic bullets....however, here are two links: One for a technique I found effective and a link to a description of this disease which does a wonderful job explaining to others that this has nothing to with what is thought of as a “headache.”

http://www.netsync.net/users/charlies/

http://www.ouch-uk.org/ch/note_colleagues.cfm

Charlie

Title: Re: I am feeling helpless trying to help!
Post by Miss_Deleny on Sep 2^nd, 2003, 6:45pm

I am so sorry to hear that your boyfriend is suffering so much. :'( I wish there was a magic phrase I could say to ease his pain as well as yours but unfortunitly, there isn't. Like was suggested above, look through the links to the left as well as on the OUCH site .. there are MANY options out there to help in at least easing some of the pain. Unfortunitly, there is no cure at the moment but we are all still praying. And I would like to thank you for being such a great supporter for him. I know all the CH suffer's out there need all the support they can get from us supporters :)

Wishing PFDaN to you both!
~April~

Title: Re: I am feeling helpless trying to help!
Post by lipsey1170 on Sep 3^rd, 2003, 10:09am

Hi Jackie,

Thank you so much for your e-mail. You truly are a wonderful support for your husband, Blake. I am sure he is happy to have you by his side. I will definitely have Michael try some of the things Blake has tried. We will try anything at this point. The suffering is so awful. I truly feel so helpless when he gets a CH. He doesn't even want me to rub his back or anything. I feel like I need to comfort him in some way, but he just wants to be left alone when he is having an attack. Just a motherly instinct I guess.

The Lithium he is on is making him sick. It turns his stomach constantly, nausea, diarreha and sometimes vomiting. His doctor just lowered his dosage because they thought it may have been too high. I forgot the exact dosage.

I wanted to ask you about the Zomig. Is it like Imitrex? Is it a pill or injection? He has never tried the Zomig before and his doctor never recommended it. Just the Maxalt, but that didn't work at all. Michael said that he wants the doctor to take him off of the Lithium because it is not helping him at all, but I told him that it may be helping him more than he knows and that going off the medication might make the headaches worse.

As for the oxygen...he carries a tank with him at all times and it does help if he catches the headache as soon as he feels the pinch, but doesn't always work. Some of his attacks come on so quickly that even if he takes it, it isn't helpful. Michael went to one of his appointments without me and the doctor told him only to take the oxygen for 15 minutes at a time and if it doesn't work then to stop because it is so pure. Michael had forgotten what he said and was taking the oxygen all night long while sleeping. He was going through a tank a night. That is alot of oxygen. He was getting pain in his chest so we went to see his doctor and he told him how much oxygen he was taking and the doctor told him that he had burned his lungs because of excess use of the oxygen. That is why I need to be there for every appointment. Michael gets so upset during the appointments that he never really hears what the doctor says. Everytime we go home...he says "How much of that am I supposed to take and how many times a day?" I said...you were there, too, aren't you listening? But you know what, it is not even that he isn't listening....he is so overwhelmed by the changes in medications he is forgetting what he is on and how much to take because the doctor keeps changing the meds and doses every couple of weeks depending on how he is feeling.

I know I don't have to tell you, you know exactly what the headaches are like. They are something awful and I hope Blake is hanging in there. I am so thankful I found the website. I think the next step is that other surgery with the electrodes. He will try anything at this point. His neurologist just moved up an appointment for him with the Neurosurgeon and with the new specialist because he is suffering so badly. Michael does work....but for my father. He has a Class A license to drive tractor trailers, but he can't drive with the CH's. He could hurt himself or someone else. So in the meantime, good ol' dad has stepped in to help out our income situation. When Michael gets his CH's he just goes into the back with his oxygen and imitrex injections and tries to get rid of the CH. My father tolerates it because he sees how much he suffers. We are okay financially at the moment. I have a decent salary (50's) so if he is put on disability it would be a struggle, but we would try to get by. I really don't want him to go on disability, but his current doctor feels like there is nothing more he can do for him at this point. That is where the 2nd opinion came in. He is considering acupuncture. This new doctor is into herbal remedies. I am not so big on the herbal thing, but we will try anything at this point. She was Chief Resident of Yale Hospital in New Haven and now she is running a Pain and Headache Center at Griffin Hospital. I heard she is wonderful.

See Part 2 - Lipsey

Title: Re: I am feeling helpless trying to help!
Post by lipsey1170 on Sep 3^rd, 2003, 10:10am

Part 2 - Lipsey

Michael just called and I found out how much Lithium he was taking. 1200 mg of Lithium and 720 mg of Verapamil. The 1200 mg made him really sick, so the doctor just lowered his dosage to 900 mg yesterday. He had a really terrible weekend feeling sick. Topamax really worked well with Steroids, but the Topamax wore off quickly and you can only be on Steroids for so long. That was the only time he had real relief. I read him your e-mail and he was so happy to hear what you had to say. He was amazed to find out there were more people suffering from the same thing. He felt like he was the only one and couldn't understand why it was happening to just him. I know he was aware of other people having them, but never heard about it or ever met anyone else who had them. To hear about it gave him a sense of relief in its own way. I told him that he needs to get on the message board and really start talking to people. He is not the greatest typist, but I can do it for him. I would do anything for him. December 19th we will be together for 2 years, I can't imagine him before we met suffering for 6 years without medical insurance. When I first met him the only thing he was taking was Motrin and Icepacks!!! I got him to a doctor right away! Instantly! I couldn't believe the suffering!!! He told me he was on Verapamil about 6 years ago, but then he didn't have medical insurance for all these years. I got him insurance (thanks again to my father) and found a Neurologist right away.

I am at work so I must sign off for now, but I wanted to thank you again for all your support. You are truly a blessing. As I find out more information I will keep you posted. In the meantime, feel free to e-mail me anytime. Thank you so much for your help. During lunch I am running to the supermarket to pick up some Dramamine, Excedrin Migraine and some strong coffee for the house.

You are wonderful Jackie! Keep up the good work with Blake...he is very fortunate to have you! We will keep the faith and fight this!

Love,

Kristy

P.S. Lipsey is what my bestfriend's son calls me because he can't say Kristy. Isn't that cute?!?!

Title: Re: I am feeling helpless trying to help!
Post by lipsey1170 on Sep 3^rd, 2003, 10:14am

Dear Charlie and April,

Thank you so much for help with the Links. I am downloading the information as I write to you so I can take the info. home to Michael. I truly appreciate all of your help. You both are an inspiration and we wish you well.

Much Love,

Kristy