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Cluster Headache Help and Support >> Cluster Headache Specific >> New cycle afer 8 years http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1214778640 Message started by Mattcentralnewyork on Jun 29th, 2008 at 6:30pm |
Title: New cycle afer 8 years Post by Mattcentralnewyork on Jun 29th, 2008 at 6:30pm
My name is Matt and I've been in remission for 8 years. I'm 40 years old now and I thought this nightmare was over. Currently living alone, this is a real nightmare to say the least. I can't put my family through this anymore. My lucrative job is in jeopardy unless I can find someone with a clue about this disorder. Living in Syracuse NY with this rare disorder, I'm not finding much help in the emergency rooms. All I'm asking is for someone to say "I understand and you'll make it". It's 6:30 EST., I'm do for my next shortly. God help anyone who has to go through this pain.
Sincerely, Matt |
Title: Re: New cycle afer 8 years Post by coach_bill on Jun 29th, 2008 at 7:25pm
Hello Matt, im Bill 40year old male in Cleveland. Your gonna be ok, and your gonna make it!! Matt you should consider the family medical leave act, its just 1 page the doctor fills out and your employer cannot fire you do to the condition you suffer. Bosses hate FMLA but it saved my job, my advise would be go to a local family MD. you will see him alot faster the the nero, Tell him you were previously diagnosed with cluster headaches and tell him what helped break your last cycle, print out the 02 info you get and show him!! tell him your last doc retired inbetween cycles and your left with this?? He will take you on and the scripts he writes are not druggy drugs so he will help you with his pen on the 1st day!!! Also you better get OXYGEN get the right 02 mask and you should be ok soon. also when you feel your next round coming on drop and give me 50 push-ups, that worked for me a couple of times and it also will give you a mental push me back attudude that the beast cant stand. good luck PM me if you wish for more tricks on how to battle the beast with no insurance. Coach Bill
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Title: Re: New cycle afer 8 years Post by Mattcentralnewyork on Jun 29th, 2008 at 7:41pm
Thanks for replying. I'm feeling very alone due to the fact that only my family has a clue about this disorder. When I moved from New Jersey, I lost the experience from the doctors. When I go to the er now, they look at me with the proverbial "deer in the headlights" look. After spending the last 4 days at my parents house surrounded by family, I decided to give them a break. I almost hurt someone accidentally during a severe attack.
Anyway, knowing I'm not alone, helps greatly. Thanks, Matt |
Title: Re: New cycle afer 8 years Post by debOUCH on Jun 29th, 2008 at 8:03pm
understand ur feelin alone, matt, however, we all here are here to help....................u r absolutely not alone here!!!!!!!!!! maybe try some melatonin @ night for the evening hits, may aid in the sleep and hold off "da beast"...................tried Red Bull to knock down some hits a couple of notches? ice? heat? black strong coffee?........i am hopefully @ the end of my 5 mth first ever cycle, 4 days no Ch!!! however, when/if HE (yes my beast is a male!!) returns, i will fight him with all i have, and then some more!!!!!!!!!!!!!!! i wish u PF times, vent all u want on here, that's what we are all here 4!
deb [smiley=hug.gif] [smiley=hug.gif] |
Title: Re: New cycle afer 8 years Post by Mrs Deej on Jun 29th, 2008 at 8:04pm
Matt,
Welcome!! Sorry you had to find us, but what a great place to be...with people who understand and hurt just like you! Read up on the site, it's full of information that can help you greatly when yous backs against the wall with your doctors!! You are gonna be ok...lots here have "been there, done that" :) |
Title: Re: New cycle afer 8 years Post by sandie99 on Jun 30th, 2008 at 6:14am
Welcome, Matt. :)
I'm so sorry that the beast found you after remission. But the good news is: you already know that you can become PF, so you can become PF again. :) Other folkes have already give you good advices, check them out and there's more at this site. I'm sure that you can find a treatment, which suits you and helps you get back to the precious pain free days. Lots of PF days, Sanna |
Title: Re: New cycle afer 8 years Post by Lawmandave on Jun 30th, 2008 at 8:50am
Matt,
Sorry you are here but this is a great place to be!!! Everyone here will help you and although you feel alone, as most of us do when suffering, we are all in the same boat together! I agree with the previous reply's, get into a neuro right away, try ice on the back of the neck, energy drinks, melatonin at night and 02! As far as your family understanding, search this site and find the "letter to family and collegues", print it out and give it to them. As much as I have read, it explains "the beast" the best. Wish you the best my friend and PF times ahead. Dave |
Title: Re: New cycle afer 8 years Post by DennisM1045 on Jun 30th, 2008 at 11:50am Bob Johnson wrote on Jun 29th, 2008 at 9:23pm:
Who you calling old fart ;D Hi Matt! Welcome to the family. Man, 8 years. That's one long break. Sorry to hear the beast found you again anyway. You not gonna die. Everything will be ok. You can, and will keep your job! The secret is learning what works best for you. The best way for that to happen is self education. There is a lot to read here to be sure. I know you are in pain right now but make the effort. You'll thank yourself later. Most Docs and ERs don't know anything about clusters. It's up to us to find the info we need and bring it to their attention. So once you get your bearings the next step is to find a Dr you can work with. Then you reclaim your life. Bob gave you some great links. I'll just add that I use O2 both at home and at work. No one bats an eye. -Dennis- |
Title: Re: New cycle afer 8 years Post by StressFree on Jun 30th, 2008 at 4:12pm
Hi Matt,
Hang in there. I have had very long remissions also. If you are getting multiple daily hits, a Prednisone taper may be worth taking to give a week long break. That stuff tightens up the blood vessels and keeps them tight. All that remains of clusters in my case is a comparitively mild burning sensation in the temple area. They have to give a fairly strong dose, and then taper you off of it for several days to ensure your immune system isn't weakened. While you are getting a break with the Prednisone, they likely will try Verapamil at a fairly high dose too. It is a blood pressure med with fairly mild side effects (makes me tired). Maybe you've been through all this 8 years ago? It works well for many of us. Staying on the verapamil for 4 or 5 more weeks and alternating Maxalt tabs and Stadol nasal spray (if someone will prescribe it) to abort breakthrough attacks has worked well for me. Also, I've zapped the crap out of my temple, jaw, scalp, back of neck, etc with a TENS machine (electricity that makes your muscles jump). It seems to help some. Did you happen to have a rather bad cold or flu that kicked you into another cycle? Or perhaps some excessive stress prior to or during the onset of cycle? I'm wondering, as these have been appearant triggers for me. It may be more significant to note any suspected trigger in our cases, since we have unusually long remissions. Good luck with the work and your family, don't give up bro! Hope to hear back from you, Rich |
Title: Re: New cycle afer 8 years Post by tuck on Jun 30th, 2008 at 6:24pm
Matt, hang on dude, you are gonna be ok!! take the advice from coach Bill and Bob Johnson, they know what they are talking about. I'm 42 years old, was in remission for 2 years,,(bliss). read, educate yourself, and BE TUFF.. You can beat the bastard. This is the place to vent, or get that uderstanding ear. We all understand and have been there. Good luck and God bless ya. Tuck
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Title: Re: New cycle afer 8 years Post by Mattcentralnewyork on Jun 30th, 2008 at 6:34pm
I'm not sure if it was a "fluke", but last night I injected 6mg Imitrex and was relieved within ten minutes. We'll see what happens tonight.
Thank you all for the support. Matt |
Title: Re: New cycle afer 8 years Post by BarbaraD on Jul 1st, 2008 at 12:00am
Matt,
Welcome to Clusterville... Now go out and get some Red Bull -- keep it handy and chug-a-lug a can at the first sign of Mr. Demon. A lot of the time it will kill a hit in it's tracks. Melatonin at night (12-20mg) will stop the night hits. O2 is the first line of defense for most of us (15 liters with a non-rebreather mask). Ice Packs are great (frozen peas work well for ice packs) or heat (your choice - whatever works - we're split on this one / heat or cold). But whatever you do -- DO NOT think you're alone in this -- there are several hundred people on this site who are here to HELP, SUPPORT or whatever you need. Most of us KNOW exactly what you're going thru (I'm chronic and haven't had a day off since 97 - an 8 year remission sounds like heaven to me). And I'm just sitting here laughing about you getting violent with a family member during a hit..... I can relate to that. Everyone who knows me KNOWS NEVER touch me when I'm gettting hit or I might just injure them. Even my 6 year old grandson knows to wait until Granny takes off the O2 and then give her a hug when she's all better. But you hang in there -- it will get better.... I promise. Hugs BD |
Title: Re: New cycle afer 8 years Post by Mattcentralnewyork on Jul 1st, 2008 at 6:11pm All, Since you seem to be the only people besides my family who understands what I'm going through, I wanted to tell you what a new Neuro said regarding treatment. Please reply with any comments: Melatonin 9-12 mg's at night Depakote er 500 mg..2 at night Frova two at night. Also, he advised me that I can't do workouts with heavy lifting. Any comments on this plan would be appreciated. Matt |
Title: Re: New cycle afer 8 years Post by DennisM1045 on Jul 2nd, 2008 at 6:49am
Two frova at night every night strikes me as a bit of overkill.
Frova is a very long acting triptan - up to 26 hours of relief. It can take up to 3 hours to become effective in your system. That makes it a bad choice for an abortive but it is very effective at giving you a whole pain free day. Triptans every night? You are the first I've heard of. How many milligrams are the tablets? You said that 6mg of Imitrex took care of a hit. Based on that I'd have expected your Dr to perscribe injectable Imitrex as an abortive. I don't have any experience with Depakote. Melatonin has been effective for me in the past with night hits. The dosage sounds right. 100% Oxygen @ 15lpm is my primary abortive. Using that and Verapamil brought my triptan usage way down last cycle. Only a handful of Imitrex injections. Good luck... -Dennis- |
Title: Re: New cycle afer 8 years Post by sandie99 on Jul 2nd, 2008 at 10:39am
Matt,
PF wishes your way. :) Sanna |
Title: Re: New cycle afer 8 years Post by Balanchine on Jul 3rd, 2008 at 5:55pm
Matt, I'll add my support to the group's. This is a wonderful bunch and has certainly made me feel welcome. Oxygen therapy is the greatest and I hope you're able to score some, somehow. Plenty of people can give you advice on that. I personally have found great relief on Topamax but I know it doesn't work for everyone, and the side effects are... challenging, especially for the first few weeks.
Hang in there, bro! Keep us posted. David |
Title: Re: New cycle afer 8 years Post by johnny_with_an_h on Jul 4th, 2008 at 4:46am
hi matt,
i have 4 or 5 years between my cycles. this is a great place to be when you're too scared to sleep. no matter what time of day, you can post something and usually get a quick response. |
Title: Re: New cycle afer 8 years Post by Mattcentralnewyork on Jul 4th, 2008 at 6:27pm Everyone, Thanks for all the helpful information. I've been a little quiet lately due to the fact that I'm just scared of another level 10 coming. Thankfully, my boss has been very supportive. He's the only one that currently knows from my company. I've been working virtual office for the past week and hope to try to return Monday. Family and close friends are rallying to help as much as they can. With that said, you guys and gals have been a huge help in this Thanks for all your support! Matt |
Title: Re: New cycle afer 8 years Post by maalstroom on Jul 6th, 2008 at 7:48am
Hi Matt and welcome!
Eight years huh? Must be a bummer then to realise it's not gone after all. But hang in there you might be due to another 8 years painfree after this cycle. It's a pain you wouldn't wish on anyone (except for people like Bin Laden, I'd love to see that cockroach suffer....). To me it seems like the Verapamil helped abort my cycle this time. And off course the Imitrex are a blessing. |
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