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Cluster Headache Help and Support >> Getting to Know Ya >> New Cluster sufferer, hope to get some help here http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1240856742 Message started by j0hnglist on Apr 27th, 2009 at 2:25pm |
Title: New Cluster sufferer, hope to get some help here Post by j0hnglist on Apr 27th, 2009 at 2:25pm
Hello all! Glad I found this forum. Wanted to introduce myself and hope others have had a similar experience and can offer some advice.
I am a 31 year old Male from Washington DC. About 4 yrs ago, I had what I believed were cluster headaches for about 1 month. I remember barely that it was pretty hellish. Went to doctors and I looked ok on paper cept for my terrible headaches. Somehow the headaches disappeared after about a month and I forgot all about them. Flash forward to 3 weeks ago and I am getting daily Clusters of unimaginable severity that feels like somebody is stabbing my right eye. Its been pretty difficult. This past Friday nite I decided to go to the emergency room cause my attack was so severe. Of course by the time they saw me the headache was gone. They did a CT scan just in case and all was fine. The ER doc confirmed I had classic cluster headaches. My attacks happen very randomly. Used to happen during the days, then switched to night time, now back to daytime. I had a streak of 3 days last week where my clusters didnt appear and I noticed its because I got a LOT of sleep. My current theory is my sleep deprivation triggered it. On days I am tired, my cluster headaches are MUCH more severe I think. Alcohol also destroys me so I've had to quit that. For relief, I have been taking Imitrex pills. Now, I don't know if they work or not because it seems to take 1.5 hours before I get relief. I am not sure if its because the migraine finished or the pills take forever to absorb. I just purchased the nose spray form. BUt I am shocked at how expensive it is. $50 copay for 6 nasal shots. I am trying to save them for the most severe attacks. Anyway, psychologically, its hard to cope knowing this is going to happen every day for some time. Its destroyed my weekends. And the most frustrating thing is, I have to wait 2 months to see a neurologist. Any advice would be much appreciated guys. I will be browsing this forum regularly. |
Title: Re: New Cluster sufferer, hope to get some help here Post by j0hnglist on Apr 27th, 2009 at 3:07pm
WOW. Thank you for that excellent post! And yes, my girlfriend is a cardiologist and made sure I found a neurologist who specializes in headaches specifically. I will cross reference the ones I have found with your links. Thanks again!
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Title: Re: New Cluster sufferer, hope to get some help here Post by BarbaraD on Apr 28th, 2009 at 8:16am
In the meantime......
O2 O2 O2 --- if you can get your GP to RX it - get on it immediately... Read the Oxygen info on the left and make sure to do it RIGHT (or it's useless). It works for about 70% of us and we SWEAR by it. Melatonin at night before bedtime (12-18mg) has helped a bunch of us to get thru night-time hits (gets us thru the REM sleep where the CH hits). Don't get upset if it doesn't work on the first night - sometimes it takes a little while to get in your system. (Took me three tries before I "stuck" to it -- now I don't go to bed without it). Red Bull (or any energy drink with caffeine and at least 1000mg of Taurine) at the onset of a HA may work as an abort if you get to it soon enough (does for a lot of us). Welcome to Clusterville... Sorry you have to be here, but this is the best place on earth to be if you've got CH. When someone on this site says, "We understand how you feel." you can bet your bippy we DO, cause we've all been/are there. Me, I'm chronic and my last cycle started in '97. My O2 tank is my bestest friend and buddy. Ask questions, vent, whine, whatever. We're here to help and have been doing a pretty good job of it the last 10 years. You'll get to know us pretty quick (and don't be surprised if we get nosey about you - I'm 65 and I'm REAL nosey about the kiddos who come to town ;)) Hugs BD :-* |
Title: Re: New Cluster sufferer, hope to get some help here Post by Lottie on Apr 28th, 2009 at 8:35am
I also highly recommend O2. Even if your insurance company doesn't cover it, it's a lot cheaper than Imitrex nasal spray or injections. And if used correctly, it works a lot faster than the pills.
Lottie |
Title: Re: New Cluster sufferer, hope to get some help here Post by j0hnglist on Apr 28th, 2009 at 11:39am
I am DYING to get O2 after reading your posts. I still have to wait 2 weeks to see a neurologist who could prescribe it for me.
However, last nite I started on Melatonin and Verapomil right before going to bed. And guess what? Ironically, it was the first time I got a Cluster while I was sleeping. It woke me up at 3:30 am. I quickly ran for my imitrex nasal spray and it took 1.5 hours before I could go back to bed. It was awful :( I hope the Melatonin and Verapomil combo starts working soon. |
Title: Re: New Cluster sufferer, hope to get some help here Post by Bob_Johnson on Apr 28th, 2009 at 1:13pm
Don't expect instant results from the Verap. Dose adjustments often needed and it takes a number of days before effect begins.
========== Headache. 2004 Nov;44(10):1013-8. Individualizing treatment with verapamil for cluster headache patients. Blau JN, Engel HO. Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018). |
Title: Re: New Cluster sufferer, hope to get some help here Post by j0hnglist on Apr 28th, 2009 at 1:52pm
yeah I am quickly tapering up
took 80 then 160. gonna try to hit 480 soon the GOOD NEWS? I just got an appointment with a solid (seemingly) neurologist for Thursday morning! No more waiting! |
Title: Re: New Cluster sufferer, hope to get some help here Post by BarbaraD on Apr 30th, 2009 at 6:12am
Good for you kiddo... Now let us know what happens today when you visit the neuro.
Hugs BD :-* |
Title: Re: New Cluster sufferer, hope to get some help here Post by Guiseppi on Apr 30th, 2009 at 10:41am
I'd suggest printing out the oxygen info on the left and bringing it with you to the neuro. Some neuros can be a little hesittant to prescribe 02 without some documentation to back it up. It's having such a huge success rate, has so little side effects, is so inexpensive, it'd be a shame not to give it a try right out of the chute!
Glad you found us, welcome home. Joe |
Title: Re: New Cluster sufferer, hope to get some help here Post by j0hnglist on Apr 30th, 2009 at 1:14pm
guys I have a major update for you, just saw the neuro. But I am going to post this in the treatment subforum so I can get more hits for answers. Thanks
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