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Title: New Member with Questions Post by kathyv on Mar 11th, 2005, 10:59am Hello Everyone! I'm a new member today and I'm hoping that you can help me. I'm hoping to find answers for my son. He is 18 years old and on the Autism Spectrum. So communication is difficult to say the least! He was doing very well until 2 1/2 years ago when he started to experience horrible headaches. These headaches would come one in a matter of minutes. He is normally kind, polite, respectful, BUT when he gets one of these headaches, he becomes mean, angry, and swears. He can sometimes have these headaches30 days in a row. Sometimes they seem to last only ten minutes sometimes they seem to last hours. The pain seems to be unbearable. His neurologist INSISTS these are migraines and he has been using Zomig for the last 2 1/2 years. Needless to say, life has been hell both at home and at school. He has gone from being in regular classrooms and being on the National Honor Society to having to be in the Life Skill Program (over the last 2 years--he has regressed so much because of these headaches). We have been to so many doctors...ENTs, allergists, chiropractors, psychiatrists, etc., etc. I finally flew a few weeks ago to Chicago to the Pfeiffer Institute with him and received blood results yesterday. It shows histamine problems...after some research I came upon cluster headaches again (I questioned the docs about this over the years and of course they said no). But the more I read, the more it fits. His left eye sometimes droops, his forehead puffs up during these headaches. He actually becomes violent during some of these headaches. His psychiatrist over the past year has prescribed antipsychotics...apparently thinking he suffers from bi-polar or schizophrenia. The meds have helped the headaches somewhat...but is that because they have zombied him out so much???? My son is losing his life to these headaches. I think I'm on the right track now. Do any of you do anything nutritionally for your headaches? What medicines have worked the best for you. Thank you so much if you have read this far and thank you so much if you have any advice for me because I am working sooooo hard to save my son's life. In the past 6 months he has become suicidal because he says he just wants to stop the pain. Thank you for any advice........Kathy |
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Title: Re: New Member with Questions Post by guesst on Mar 11th, 2005, 11:12am There is a genetic link between bi-polar, ch and autism, It does sound to me like your son has CH. Get a new neuro. Modified to add, I take magnesium and melatonin as preventives. |
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Title: Re: New Member with Questions Post by pattik on Mar 11th, 2005, 11:22am Hello Kathy, Boy do you have your hands full. I'm so sorry to hear about the complexity of your son's problems. Nutritionally, you might want to look into magnesium. There are many helpful parts to this site on this subject. But given the other meds he is on, be sure to clear this with his physician first. Oxygen may be a good solution for you if these are indeed clusters. As long as you educate yourself on the most effective use of O2, and you help your son to use it safely. If the O2 works, he probably has clusters. I really feel for your predicament, and my thoughts are with you. pk |
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Title: Re: New Member with Questions Post by E-Double on Mar 11th, 2005, 1:25pm Hi Kathy, Drop me a private message or email me..... I am a special education teacher and a Board Certified Behavior Analyst who specializes in teaching children with Autism Spectrum Disorder........ Maybe we can put our heads together to develop a "method" to communicate for your son. But I would need a lot more information...... Write me!!! Eric |
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Title: Re: New Member with Questions Post by miapet on Mar 11th, 2005, 3:02pm Magnesium . . .(I have D on a cal-mag blend) . . .melatonin (some take up to 9mg or more per night), as it helps the night attacks . . .o2 is the least invasive means of battling individual h/as. . it works for a lot of people. Some triggers, for D, were nuts, alcohol, msg . . .I'm sure there were more, but those were the biggies, anyway. As posted earlier: get a new neuro, one that understands ch and h/as in general. Since your son is obtaining services through his school, you could also require their involvement. . . It sounds as if you know your/his rights, just follow up on them. As a special ed teacher, my heart goes out to you and your son, not only for the amount of pain these h/as cause, but the amount of regression that has happened! There is a link to CH friendly/knowlegable docs, maybe you can find one near you? *positive light and energy* miapet |
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Title: Re: New Member with Questions Post by don on Mar 11th, 2005, 6:01pm Here are some suggestions for a CH Doc in PA. Pennsylvania Dr. Noah Rosen Philadelphia Steven Grossinger Ridley Park Steven Grossinger Ridley Park Dr. Steven Grossinger Ridley Park Dr. John Talbott Pittsburgh Greg Cooper Philadelphia Dr. Robert Kaniecki Pittsburgh Stephen C. Ross, M.D. Harrisburg Jill Constantine Md. Jeannette Dr William B Young Philadelphia |
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Title: Re: New Member with Questions Post by Kris_in_SJ on Mar 11th, 2005, 8:14pm Hi Kathy, My heart goes out to you. Your son's reactions and response to these headaches makes it sound pretty close to clusters. Even those of us who haven't a hint of autism react violently, though we usually vent our violence upon our own heads. Definitely talk to Eric (E-Double) since he has experience with this, and experience as a sufferer. Best of luck. Please keep us informed. Kris |
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Title: Re: New Member with Questions Post by yikes-another-one on Mar 12th, 2005, 10:12am If you keep reading the past threads, you may find that a majority of us have begged to die at least a time or two.... Just knowing that our loved ones are nearby it can sometimes reassure us, but we also feel guilty and embarassed that the pain can make us whimper in public..... we do feel the Jeckyll and Hyde personality. I am not a timid person by nature, nor very bubbly but when in pain, I hide inside the house (before I found this web site, that is) and when not in pain, I am the happiest person you would ever meet....so..... go figure. As the headaches persist, memory does regress. I had graduated high honors from my high school, 3.7 g.p.a. in jounior college for Computers....etc... now I have to make a list to remember to clean my house or finish tasks that are important. If someone asks me a favor, I have to write it down....or the deadline will come up and I'll be puzzled as to what they want from me.... it's part of the dread of the pain, or the preoccupation with avoiding the pain. Also, Zero energy is a big factor. it's not laziness on purpose, it's more exhaustion after an attack that is similar to a seizure or running a marathon. Lack of sleep, as a mom, you know how it makes your attitude change.... So good luck, and remember to READ, Read, Read |
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Title: Re: New Member with Questions Post by kathyv on Mar 12th, 2005, 11:48am I want to thank each and every one of you who have replied to my post about my son and his headaches. You have given me renewed hope and faith that I can help my son. So many of the doctors have basically shrugged their shoulders, but what I have read from your posts and from this website has really opened my eyes and so much does indeed sound like my son. I agrree with the advice of read, read, read. I read all day yesterday and learned so much about treatments, etc. I now have a new direction and a renewed strength. Thank you! And, I'm still here for more advice and more support!!!! |
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Title: Re: New Member with Questions Post by jokrs2 on Mar 12th, 2005, 6:36pm Hi there. I am sorry that your son is having such pain as I have this horrible problem. E-Double sounds like the right person to get close to. There is so much support in here and we are ALL your friends. I am trying a natural product called Kudzu and I am having great success and I also made it through complete morphine withdrawal this week. I believe the Kudzu helped with my withdrawal and my clusters have greatly decreased in severity & time. I pray for your success in finding the best situation for your son & you. God bless, Joe |
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