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Title: Just need support Post by Tom_Thumb on Jan 28th, 2005, 12:30pm Hi to everyone . I have not been here in a fews days. I am not doing well at all. By the way I am going to tell you all that i am not holding up very well. I am a single father of a 13 year old boy . He is my life . I am so ashamed now and do not know what to do . FOR the last 6 days I am a little baby . I am getting hit with k10 every 3 hours to say the least. I can not STOP myself from rolling all over the floor . crying . begging the lord to help me . banging my head .pacing the house /screaming help please help. I am having the worst time in the 18 years of ch that i have ever had . I for now would not mine death . It would be a good thing for me . My son is so worried he doesnot want to go anywhere .school or to play . I just need someone to understand . I HOPE YOU ALL HAVE GOOD SUPPORTERS BECAUSE I HAVE NO ONE . I LIVE ALONE IN MY OWN FUCKED UP WORLD . I LOVE EVERYONE LATER |
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Title: Re: Just need support Post by nani on Jan 28th, 2005, 12:35pm Hi tom...you have supporters...your son and us. I'm sorry you're having such a bad time. What are you using to medicate these? Are you taking any prevents or using abortives? If you haven't already, see a dr asap and get something started. Use the PF times to reconnect with your son and assure him that although CH is horribly painful...you'll be allright. The pain will stop eventually. Thank him for his support and encourage him to go on living his own life. I hope things improve for you soon... [smiley=hug.gif] and pain free wishes, nani |
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Title: Re: Just need support Post by Margi on Jan 28th, 2005, 12:41pm Tom, BIG hugs. First of all, you do have supporters. You have all of us. There is always someone here, 24/7, if you need to talk. What are you using for meds, Tom? Even if you're not on any meds, there are some things you can try. If you can figure out how to calm yourself down during an attack, that's HUGE in the battle. Easier said than done, I know, but...think about it. If you get upset, your blood pressure raises and so, therefore, does your pain level. My husband has learned this lesson the hard way, trust me. He uses an icebag on the back of his neck at the onset of an attack, and this honestly does help him to stay calm. Breathing pure oxygen is not only a great abortive, it also forces you to sit relatively still and concentrate on breathing normally, thereby keeping you calm. One thing you could do for your son is to get him here on the website. There are lots of us supporters here with children and we can help him cope, too. My heart just aches for you - cluster just invades you and your family's life, doesn't it? :( Please, keep talking. Remember, death is not an option here. When you feel like you're running out of rope, always remember that we've got an endless supply here, ok? Suicide is a permanent solution to a temporary problem. Got it? |
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Title: Re: Just need support Post by Tom_Thumb on Jan 28th, 2005, 12:52pm I am taking all the meds that we all use verapamil /neurontin /imitrex /melatonin an 02 with no releif . I just can not seem to get a handle on things oh i just got back with from the doctor with prednisone just took my first dose. PLEASE PREDNISONE HELP . THANKS TO ALL LOVE YALL |
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Title: Re: Just need support Post by Tom_Thumb on Jan 28th, 2005, 1:10pm HERE IT COMES AGAIN BE BACK SOON 45MINS |
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Title: Re: Just need support Post by Tom_Thumb on Jan 28th, 2005, 1:53pm I am back they last for about 42mins . That was about a k7 ok k8 I will be so glad to say goodby to that beast!!! |
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Title: Re: Just need support Post by EmpressJMB on Jan 28th, 2005, 1:54pm Vibes and prayers coming your way Tom. Hope the pain eases. [smiley=hug.gif] J. |
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Title: Re: Just need support Post by WifeofCHSuffer on Jan 28th, 2005, 2:00pm Tom, So sorry to hear that no meds are helping but the pred. I hope it stops the cycle quick for you and you can reconnect with your son and get the doc on board to change some of your meds. That is just awful you have deal with this and your son does not have a single place to go, poor kid. Like the others said we are here for you, stay strong and things will get better quick for you. Please keep posting, we are here for you!!!! |
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Title: Re: Just need support Post by dagger on Jan 28th, 2005, 2:08pm Hi Tom - what dose of pred are you taking? My doctor started me too low (20mg/daily) and I was experiencing no relief unless I took imitrex. Then my dose got upped to 60mg/daily and it did help somewhat. You might check on that. So sorry for what you are dealing with. Just keep reminding yourself that it will end! (unless you are chronic, I suppose.) Hang in there, I know it's hard. dagger |
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Title: Re: Just need support Post by Tom_Thumb on Jan 28th, 2005, 2:26pm For the pred. I AM DOING THAT 6 5mg per day thing stepping down to one then i guess none 6/5/4/3/2/1/ that is what the doc gave me today . what do you think |
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Title: Re: Just need support Post by Margi on Jan 28th, 2005, 2:30pm as much as I hate pred, that will give you a break Tom. Know that it will come back when you're done your taper though. So, now's the time to get that verapamil into your system. You probably need to be at least at 480mgs a day to get any real effect from it (as long as you don't have low blood pressure). What dose are you on? And, are you using O2 correctly? Non-rebreather mask and flow rate higher than 8 litres per minute? wait...you're only doing 5mgs of pred a day for 6 days? Is that what you mean? Or are you doing 6, 5mg doses a day then dropping one dose a day....? 30mgs is about half of what they gave my hubby for his pred taper. I'm pretty sure he stepped up to 60mgs then started to taper down again. His was a 17 day burst though. How long are you supposed to stay on it? |
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Title: Re: Just need support Post by BigRick on Jan 28th, 2005, 2:44pm Tom you are not alone everybody on this site is concerned.I am a single father of an 11 year old son,so we have alot in common.When Im that bad with the CHs I try and think of the good times ahead with my son. As far as the prednisone it sounds like this is the time to be on them.Your doses sound a little weak to me.My Dr cycles me 100mg then 90mg,etc.,when I get to 30mg the headaches come back.I dont know how much you weigh(im 6ft3in 240lb)but since you're having such a rough time maybe you can call your Dr. and get a bigger dose to get through this.Good luck my friend. |
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Title: Re: Just need support Post by Tom_Thumb on Jan 28th, 2005, 3:18pm Back to the pred. I am only taking six 5mg the 1st day (today) then five an so on until none that will be in 5 days . DOES NOT SOUND LIKE THAT IS ENOUGH . I only 5ft 10 in weighing in at 160 . |
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Title: Re: Just need support Post by BlueMeanie on Jan 28th, 2005, 3:37pm Hi Tom, They will slow down eventually. You're probably just at the peak of the cycle right now. Do you have Imitrex injections ? I tried everything under the sun and nothing ever worked for me until I found Imitrex injections. They saved my life. Pills don't work fast enough. Also do you have 02 ? It doesn't completely abort for me, but it usually a least keeps the KIP level from maxing out. Hang in there dude, you will make it through this. VIBES.... |
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Title: Re: Just need support Post by BarbaraD on Jan 28th, 2005, 5:29pm Hey Tom, Been where you are too damn many times. This MB was my lifeline - stay on it. Have you ever gone in for DHE IVs? This will stop them for a while. But it's usually best to go in the hospital for the IVs. My insurance wasn't worth a darn and I got visiting nurses to come every 8 hours and do the IVs. They just left a hep lock in. The last time I had the nurses it cost about $800, but it broke the cycle. But do check on the DHE - it's bad stuff, but it works. Hugs BD |
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Title: Re: Just need support Post by BigRick on Jan 28th, 2005, 5:44pm on 01/28/05 at 15:18:05, Tom_Thumb wrote:
You're taking 30mg then 25mg etc.,that sounds to little to me.I've heard of people taking 60mg for 3 days then start to taper down.I asked my Dr. about my large doses(starting at 100mg then taper down 10mg a day)and he said since I was a big guy and I was having multiples at the time he was dosing me that much. From my own experience I just dont see that small amount doing anything for you.You should be taking 60mg a day for three days then taper down.Either this guy gets his dosage right or you need to find another Dr. |
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Title: Re: Just need support Post by jillybean on Jan 28th, 2005, 7:26pm Tom, I'm sorry you are suffering so. It's scary for kids. I have three boys. But you know, we talk when things are calm. They are more resilient than you think. It does no good to feel guilty about what you cannot control either. (Easy enough to say. Been there.) Best way to care for him is to take the good advice here and get yourself better. pfdan Jill |
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Title: Re: Just need support Post by Renee on Jan 28th, 2005, 8:48pm Tom, Like the others, I think your pred dosage is way too low. I, like BarbD, find DHE via IV as the best way to stop the beast when things get totally out of control. I've gone inpatient for a few days for a series of DHE IV's, (a dose every 8 hours) and i've also just gone to the local e.r and received a single DHE via IV dose. Depending upon the severity of the beast being out of control depends how many doses it takes to break the beast. I use this as my last resort when all else has failed. Grab onto the rope that we are holding out to you. You have LOTS of support here. Just remember, this will let up and you and your son will have many happy times together. I'm sending you all the pf vibes I can muster, Renee |
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Title: Re: Just need support Post by painkiller on Jan 28th, 2005, 11:36pm Sorry it's so bad Tom... I know what it's like but hang in there. I get them at night mostly and i feel lucky until a week of suffering and no sleep catches up and a trip to the ER is the only relief. Prednisone for me works at breaking my cycle but it's prescribed as so.... 3-20mg tab every am for a week, then 2-20mg tab every am for a week, then 2, then 1 then 1/2...after the taper i'm usually pf until the next cycle an if i'm no the hits are only k4's which is good since my headaches usually last 1to4 hours. I hope the cycle stops soon...lots of pf days |
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Title: Re: Just need support Post by marcelonyc on Jan 28th, 2005, 11:56pm Hi Tom, Your reaching out is really helpful to me. Two cycles ago I was on Prednisone at 60mg for about 3 weeks. My doctor did not taper, but once the dosages ended the c/h crept it's way back and pretty viciously for me. I have not tried o2, but this cycle I am on now, I have been prescribed Lithium 300mg 3x p day for 60 days as well as verapamil, and triptans, and I have had a lot of success. It has made all of the difference in 15 yrs. The good news with pred is that it worked while i was on it, but I gained a lot of weight, was having rage attacks, and extremely emotional. God bless you for reaching out and remeber your son is your family and will always be. You can not nor can anyone with any illness be blamed for their affliction. One thing this illness has taught me is to respect it, and judging yourself for a difficult situation will only make you feel worse. And in my opinion you deserve a break and some serious recognition that you are doing your best with your family. Marcelo |
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Title: Re: Just need support Post by Tom_Thumb on Jan 29th, 2005, 12:18am I am so glad you all know what the hell is going on in my head . I took 6mg melatonin again tonight at 7:30 to try to get some sleep . BUT every hour i am being hit one behind another it 12:20 and i tried as hell . Got a new tank of 02 today with a new reg. Its goes to 15Ls man that as been a big help . I guess the good is they are on the scale of about 5k to 6k I CAN TAKE THAT . I JUST HOPE THAT DAMN TANK LAST END WEEK OUT !!! LOVE YOU ALL THANKS |
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Title: Re: Just need support Post by E-Double on Jan 29th, 2005, 12:34am Try to get yourself into a night time routine....(do as I'm saying not doing at the moment.... ;)...usually in bed a lot earlier..another story) 1)Hot steamy shower (once your kid is settled and you can have you time) will feel good on the noggin and relax some of the muscles that take an A$$ whippin. 2)Then Melatonin about 30-45 minutes prior to attempting to laydown to go to sleep for the night.... ***Bed time and Wake up same time every day regardless of having attacks or not....get into a rhythm........*** Hang in ther bro! Eric |
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Title: Re: Just need support Post by Tom_Thumb on Jan 29th, 2005, 12:34am GOT TO GO 12:40AM FUCK IT A BAD ONE 02 HERE I COME |
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Title: Re: Just need support Post by Tom_Thumb on Jan 29th, 2005, 12:56am I won again only 20mins with 15l of 02 around a k5 . I am going to get my ass kicked some time tonight i think . HE the beast is getting mad .YOU no that hot burning thing that just stays there after it over. Well i am going to try the shower thing it does seem to help me . TALK with you all soon . I pray you all have a good night be back soon until then OUT |
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Title: Re: Just need support Post by sandie99 on Jan 29th, 2005, 3:45am [smiley=hug.gif] I so sorry that you're having hard time with CH. The beast can pick the worst time to come... :( But don't ever forget that you have lots of supporters, who understand you. Right here. Anytime, day or night. Lots of good vibes are on your way. And you're in my prayers. Wishing you lots of PFdays, Sandie |
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Title: Re: Just need support Post by Tom_Thumb on Jan 29th, 2005, 4:58am The hell with sleep !!I am getting hit every hour people . Should i take more of the melatonin I TOOK 6MG AT 7:30 pm maybe tonight 9mg or not . OH YEAH I AM BUILT BACKARDS NOW MY FEET IS SMELLING AN MY NOSE IS RUNNING LOL. EVERY HOUR ON THE HOUR THAT SHOULD BE GETTING AT THE PEAK OF THE CYCLE YOU THINK ??WISH PF DAYS TO EVERYONE |
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Title: Re: Just need support Post by Renee on Jan 29th, 2005, 6:50am Tom, I'm so sorry to hear you are still in such pain. Have you tried ice on your neck and temple area when you feel a hit coming on? I would suggest you get more than one o2 tank, depending upon the size you hav. I have a small carrying tank for my vehicle, a mid-size tank for work and home. The hot shower works for many but for me it makes things worse. I need cold (ice) and it helps reduce swelling. Keep us updated and we're here for ya, Renee |
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Title: Re: Just need support Post by bigred on Jan 29th, 2005, 11:18am I bleed for you my freind. I am a single dad raising a 9 yr old girl and 13 yr old boy who turns 14 on monday. Its the hardest thing, to suffer when the kids see it. My doc just put me on 20mg prednisone twice a day for the next ten days. Then we lower the dose for the next six days. It helped me get my first night of Pf sleep in 2 months last night. So mentally I think Im going to turn a corner. The right frame of mind is part of the cure. With the son, just make the best of what little PF time you have and reassure him that you are strong and will overcome anything you need to to be their for him. I myself prayed to god a year ago and told him I would quit drinking if he would stop giving me HA. I held up my end, He has yet to hold up his. But going "early" to see Him and ask Him why he wont help is not an option. When those thoughts are thier, just think of the joy you will miss watching your son run for that touchdown, or recieve that special award. Tom we need you and he needs you. Stay Strong. bigred |
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Title: Re: Just need support Post by Renee on Jan 29th, 2005, 10:40pm Tom, Just checking in on you. Has the beast let up any? We're right here, fighting with ya. Grab the end of the rope and hold on as we have the other end. I hope things calm for you soon, Renee |
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Title: Re: Just need support Post by BarbaraD on Jan 30th, 2005, 7:23am Tom, I take 9mg of Melatonin at night so try upping your dose. It took about two or three weeks to get in my system and start working, but I'm paranoid about taking it now. Only way I get any sleep. Nuther thing -- when you feel the "FIRST" twinge of the beast (the time when your subconscious tells you it's starting) - get up out of bed RIGHT THEN. Grab a cup of coffee immediately and the O2. This will "sometimes" (nothing works all the time) abort the CH before it takes hold. Some people can go back to bed after it subsides, but I'm not one of them. I'm up at 4 a.m. every morning (the beast seems to run on a four a.m. schedule with me) for the day. The advice about the "routine" (going to bed and getting up at the same time every day) is good advice. Stay in the routine year round. This works well for me. I get about 5-6 hours sleep a night and make it thru the day with a little more energy since I started doing that. The exhaustion is what really wears you down. About your son... put him on the mb. I think Margi has some support for kids. My son is 36 and still doesn't have a clue (Mom has ONE of her HEADACHES). The main thing -- stay tuned to the mb -- you are not alone. Most of us have been where you are right now and we do understand. Hugs BD |
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Title: Re: Just need support Post by PrettyH8Machine on Jan 30th, 2005, 10:38pm Damn bro, sorry to hear you're getting slammed by the beast. Just know, you are not alone. There are alot of us who fight the attacks like you are doing now. The shit isn't right by any means, and I sometimes highly question God when he says he will lay no more upon us than we can bear. My support system here at home has gone to hell in a handbasket. Kind of like a song nobody wants to hear after the umpteenth time. It has alienated me from friends and family, and I live by myself. The folks here ARE my support system now and I can tell you after having met quite a few clusterheads - these are the best supporters in the world. Hang tough. It can't last forever - just remember that. Peace, CD |
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Title: Re: Just need support Post by _L_ on Feb 1st, 2005, 7:48am TOM... you tell that beast to go to hell everytime he strikes.... take some of the focus of your nerves off your head.....take a cold shower |
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Title: Re: Just need support Post by lionsound on Feb 1st, 2005, 9:12am Tom, How are you doing today? Pf vibes for you... -lionsound |
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