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Supporter's Corner >> Supporter's Corner >> New supporter http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1350070003 Message started by Suffering mom on Oct 12th, 2012 at 3:26pm |
Title: New supporter Post by Suffering mom on Oct 12th, 2012 at 3:26pm
My teenage son was only recently diagnosed with CH after an episode that put him in the ER for hours. With all the symptoms he exhibited everyone around him thought he was having a stroke, until the diagnosis was made. It tore out my heart to see such a strong, and otherwise healthy young man curled up in a fetal position whimpering like a little puppy. Needless to say, I've done hours of reading and research about this horrible monster that has invaded my son's life. It hasn't been easy, but we are learning to take one day at a time.
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Title: Re: New supporter Post by Suffering mom on Oct 12th, 2012 at 11:17pm
Thanks for the welcome.
We haven't seen the neurologist yet, but that's on the agenda by the end of the month. In the mean time, he takes sumatriptan as an abortive measure when he feels the warning symptoms. When he had the first episode and ended up in the ER the pure O2 was the most helpful until they gave him the meds that knocked him out cold. He was so far advanced into the episode that he was seizing and shaking and had slurred speech and totally lost his vision. He described it as feeling like someone was stabbing an ice pick into his eye over and over again. If I live to be 100 I never want to see him like that again. It was the most helpless feeling I've ever had in the world, to see him lying there and not be able to do a single thing about it. |
Title: Re: New supporter Post by Guiseppi on Oct 13th, 2012 at 12:27am
Hang in there mom, I simply can;t imagine watching my kid take a hit. :'( Keep reading everything on this board. Knowledge is about the most powerful weapon in the battle against the beast. Pay special attention to the "Batch Regimen" It's cheap, good for you even without CH, and is helping way too many people to be coincidence.
Any chance you can nudge the doc into prescribing a home oxygen set up while you wait for your neuro appointment? Even if you have to go outta pocket, tanks are less then $5 a month to rent, $12-$15 to refill. It's a great comfort knowing if beast comes knocking I can expel him in less then 8 minutes just huffing the 02. What part of the world are you guys in? JOe |
Title: Re: New supporter Post by Suffering mom on Oct 14th, 2012 at 9:11am
Joe, we are actively pursuing the oxygen avenue, so that relief is available for him soon. At the moment we rely on his recognizing the warning signals and hitting it with the sumatriptan.
We are in the central US, Okla to be exact. I've been reading (again) on the Mayo Clinic site and saw that these things tend to be perhaps seasonal, with the most prolific time being during the transition from summer to fall. Have you or anyone else observed that phenomenon? It would be good to know if this time of year will always be terrible on him. Fortunately, ( and I sincerely apologize to the rest of the CH's out there) he seems to be on the low end of the frequency scale. Two or three headaches and then he's PF for three or four weeks. The intensity level stays about the same, but he's not having them as often as I've seen others describe on the site. |
Title: Re: New supporter Post by Guiseppi on Oct 14th, 2012 at 1:24pm
The seasonal thing is very common for episodics, with spring and fall being very common start times. Here's the two doctors listed on the OUCH website for your area. These are doctors other CH'er have used and recommend.
Oklahoma Tulsa: Dr. Jay K. Johnson Tulsa Neurology Clinic Dr. Trudy Milner OMNI Medical Group As to his "level" of suffering. Sadly that's also something we see a lot. Looking back i was getting "cluster like headaches" In my mid teens but the seriuous intensity didn't hit until my early 20's. All the more reason to get a handle on it early. Joe |
Title: Re: New supporter Post by Tim in Texas on Nov 22nd, 2012 at 6:54pm
Hi there loving Mom!
First let me tell you how great the people who support us "Cluster Heads" are. I can't begin to imagine what you go through when we are having an attack. There may be times that it seems like we aren't greatful or we don't love you. We will lash out, say horrible things, and be very very grouchy for long periods of time. These are the times we really need you the most. Just so you know, these are the things that really help the most when we are being attacked. We want to be alone (I prefer a cold and dark room...the dark only helps me to distract myself from the hell I am going through). This is very important, because we are trying our best to focus attention elsewhere. Don't go in the room! You will hear us crying maybe even hitting our heads on things. We aren't being self-destructive....its just the nature of the beast. This one will be tough for you to adhere to, but leave him be. Of course make sure there are no weapons or anything like that in the room with him. Secondly, please please please don't talk to us. Please try to keep people from talking to us too. We are trying to "meditate" in a sense. Talking to us only breaks our concentration and causes the pain to rise to a new level. Sometimes you may see him walking out of the room and down the halls and such. This by no way means he's free of the pain. When we "walk the beast", that means that we are almost at the point where the pain can't be any greater. I think we pace to find the most comfortable place in the house. I know you are praying that he's better and your dying to know his condition....allow him to speak first. Third, please try your best to keep the other peoples noise levels in the house to a minimum. This includes keeping them away from him. To be honest, I deal with my headaches the best when nobody is home. When there are, my girlfriend takes my 4 year old outside. Finally, please don't touch us. There will be plenty to for that when the attack is over. He may like cold compresses or hot water bottles to help ease his pain (every cluster head is different....I like neither). Please don't retrieve them for him or get ANYTHING and try to hand it to him. If you do, don't be surprised if he slaps it out of your hands. As crippled as we seem to be, we are not handicapped. Besides, having to get these things for ourselves is helping with the distraction. Its might also be a good idea to turn ringers off on phones. These are the best things people can do for me when I'm under attack, and most others who suffer will agree. I know you may be thinking "What!? Are you crazy? How is that helping!?". Believe me, that will be a MAJOR help! Afterwards he will be tired and cranky. Nows the time for a hug and preventative meds. Maybe you should ask him what would be the best things you can do for him when he's having attacks. My girlfriend mapped out a plan of action and now its routine. Oh and one more thing that will greatly help him. Tell him to become a member here. He will be able to interact with other people who TRULY know what he goes through. You'll hear him laughing about attacks with other members. It helped me immensely becoming a member here because I didn't have anyone to talk to who also suffers the way I do. He will be greeted with open arms and smiling faces. I hope what I said will help things so they won't take a toll on your family. Because we who suffer.....know that those who support us suffer too. |
Title: Re: New supporter Post by rotag on Dec 11th, 2012 at 9:54am
New supporter,thats me,my husband recently started getting this beast actually its been 11months now,he didn,t start seeing a doctor till a month ago,he was ruling out other things that it might be,then he seen a show on TV,and it was about a man with clusterheadaches,the symptons and everything my husband was dealing with match exactly. Then he researched and came upon this site and felt a bit better knowing he was not alone. He is still seeing his doctor,and has explained to him the symptons and that he felt clusterheadaches was what was happening to him, his doctor has ignored that,and continues to do tests that my husband feels are not related to his issue,Anyways I have read some of the things as supporters we go through,it is so hard to not do anything or know that there is nothing you can do. My husband gets his visits with the beast(he calls it) always when he wants to sleep,can be sleeping 20mins and up comes the beast he is around for the longest beeing an hour so far. So night time is the time it has been occuring,which is hard because I can,t rest knowing he is in the bathrm suffering through this. He says he tries to be quiet,I have told him plz just do what you have to,I can rest anytime.Feeling so helpless is such a terrible feeling. He uses steam rite now ,no meds of any form (waiting on doctor to see if he prescribe anything before he tries over the counter meds,see I am so distraught with worry and lack of rest,not even sure what I am saying makes any sense. But TY for listening. By the way were from ontario.
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Title: Re: New supporter Post by Guiseppi on Dec 11th, 2012 at 1:44pm
Have him try melatonin. It's an over the counter sleep aid here in the states, not sure about Ontario. Start with 9 mg, about 30 minutes before he goes to bed. Many can avoid the nite time attacks this way. Some go as high as 18 mg to get relief so he may have to play with the dosing a bit.
Joe |
Title: Re: New supporter Post by Tim in Texas on Dec 14th, 2012 at 8:26am
For the new supporters. (I'm not wishing ANYTHING but remissions on anyone) There is something I feel that you should be aware of. When I was 21 I began to get my headaches (now 37) and thought they were the worst things ever. In the past 5 years, their intensity have grown to a level that I thought pain couldn't exist on. The good thing though (if you want to call it that), is that my headaches have generally become less frequent during my cycles and "the beast" may only come once a day (generally at night). I used to get 5-7 attacks a day in the past. Also, my remissions seem to last longer. I'm not sure what exactly changed about me to bring this on. I will certainly increase my awareness in the future for significant changes I make in future cycles and will gladlly share them. I just wanted to share my experience with these headaches to the newbies.
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Title: Re: New supporter Post by JessJames1968 on Dec 18th, 2012 at 4:04pm
Welcome Mom! I'm sorry we meet under such circumstances, but glad we meet none-the-less.
We can all empathize with your position. Each sufferer is different. Some want to be left alone, others want someone at their side. My partner is one that wants me there. For the little it helps, just my hand on the back of his neck, he has told me is comforting through the tears. We've not had episodes like that in sometime, thank G-d. I must agree with Tim regarding a headache specialist. We've been very lucky and successful at management of my partners episodes. We found a low daily dose of Verapamil to keep them from reaching their full intensity. While this may not be the answer for your son, it is worth talking with the Doc. In any case, as a fellow supporter, I can only say love him as only a Mom can ... and tap into this site for support. ;) JJ |
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