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new to the site but long time cluster head (Read 2915 times)
Billiam
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new to the site but long time cluster head
Nov 16th, 2009 at 1:06am
 
CryHello all,
  My name is Bill I am not a newbie to the cluster family but a newbie to the site I just found it tonight or this morning all depends on how you look at it. Well my story starts back in my early 20's one fate full night at about 3am I was awaken by the worst pain I have ever felt in my life I thought my head was going to blow up and when I ran to the bathroom to look in the mirror to make sure my left eye had not fallen out I was shocked by what I saw my left eye was all blood shot and my eye lid was almost swollen shut........so The next day after finally falling back asleep after spending a good hour in the hot shower all I could think to do at the time I went to see my doctor side note I already had a nuero doc because I suffer from epilepsy so I called him thinking this was a new and strange symptom for me but as soon as I told him what I went threw he told me right away that I had cluster headaches which I had know idea what they were so he gave me a script for the imitrex shot and told me to use then when I got one which for me they never help at all.......so what finally brought me to this site was pain and ways to deal with it I have always had episodic chs which used to be early spring then they moved to mid fall then to my joy I had been ch free for almost 5 years till now........they are back and they are worse then I ever remember so basically I am asking for help and ways of dealing with the pain and for me being a shift worker who always works different shifts ways of dealing with the pain so any help will be wonderful thank you all


Bill
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« Last Edit: Nov 16th, 2009 at 1:42am by Billiam »  
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Re: new to the site but long time cluster head
Reply #1 - Nov 16th, 2009 at 8:33am
 
Hello Bill I'm glad we're finally getting to meet you! I just wish we didn't have to meet here.

Am I right in reading that you don't have ANY meds at all at the moment?

Have you ever tried anything but Imitrex?

Some epilepsy drugs are very effective in treating CH (I should say anti seizure) so that might be helpful to you in more ways than one.

We will be very careful with the advice we give you. We're not doctors, just expert patients and we don't know your full medical history. Knowing you do have at least one other thing going on means you must discuss anything you're considering with your doctor. Sometimes things are really not good to mix and it needs a professional to keep an eye on it.

With that said, we do use some "home remedies"

Caffeine - I would lose my will to live without it! Be it strong coffee or energy drinks like Red Bull, it's just wonderful stuff. If you drink it early enough into a hit it can knock it stone cold dead. The trick is to not delay and to chug it - no being polite when the beast is on your tail!

A lot of us swear by ice but it sounds like you've already discovered the other option which is heat. It's usual to have one or the other be helpful. Heat is a huge trigger for me but ice can really help.

Looking forward to hearing more from you - please tell us anything you've tried meds wise and whether you've tried any preventatives or just abortives (Imitrex)

Helen
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Re: new to the site but long time cluster head
Reply #2 - Nov 16th, 2009 at 8:44am
 
Bill similar to u my bout this year has been very brutal!  unfortunatatly im searching for help myself and havent found any yet!  this site is filled with wonderdul info and feel if you will find help or ppl to help out it will be here!  good luck my friend!  i too work shift work! pf wishes!
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Re: new to the site but long time cluster head
Reply #3 - Nov 16th, 2009 at 8:54am
 
Billiam wrote on Nov 16th, 2009 at 1:06am:
I went to see my doctor ... he told me right away that I had cluster headaches ... so he gave me a script for the imitrex shot and told me to use then when I got one which for me they never help at all.......


He seems to have diagnosed, but certainly a cold start having Imitrex not working for you.




Quote:
so what finally brought me to this site was pain and ways to deal with it ... they are back and they are worse then I ever remember so basically I am asking for help and ways of dealing with the pain


Let your doc know the trex isn't helping.  Preventive meds are helpful to explore.   Oxygen is a great abortive and would be wonderful to get prescribed. 


Quote:
... for me being a shift worker who always works different shifts ways of dealing with the pain so any help will be wonderful thank you all


While at work, you could keep a tank in your car and if possible slip out take care of a hit.  Or if allowed, you could keep a tank at work.  It takes several minutes to rid the attacks, but being incapacitated at work for long lengths in pain is much worse. 



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« Last Edit: Nov 16th, 2009 at 8:57am by Kevin_M »  
 
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Re: new to the site but long time cluster head
Reply #4 - Nov 17th, 2009 at 8:05pm
 
GET OXYGEN 15LPM IN A NON-REBREATHER MASK. THIS WILL CHANGE THE WAY YOU DEAL WITH CLUSTERS.

                                COACH BILL
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Billiam
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Re: new to the site but long time cluster head
Reply #5 - Nov 23rd, 2009 at 8:35am
 
hello all again,

  I am sorry I also should have said that I am on depakote anit -sez med which my neuro doc told me also works as preventative med for the clusters sorry I forgot to put that in but other than the imatrex shot I tried the pill form to with no help I've been trying to get a script for oxgen but my doc has been holding out on me for some reason on that....why I don't know but I have tried the ice in tow with heat seems to work some what for me usally hot shower followed by an ice pack and paceing the living room when I'm home. and I'll have to try the red bull trick....but for me the last time I drank them I thought it was a trigger for me but I may not have been drinking them fast enough or not at the right time and I am a total coffee junky as it is now soo maybe that might be the way to go for me I'll keep you posted thank you and I will be back with up dates and any tricks I might have tried that worked for me
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Re: new to the site but long time cluster head
Reply #6 - Nov 23rd, 2009 at 8:46am
 
Hi Bill, there is information on the oxygen info tab you can print and bring to your MD.

There is also the information on oxygen from the first clusterheadache survey that was shown at the Headache conference in Sept.

All the best
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Re: new to the site but long time cluster head
Reply #7 - Nov 23rd, 2009 at 9:44am
 
Unless you have tried and it failed, I'd rather see you on this preventive because it has such a good, well established track record. The Dep you are using is still, in my judgment, an experimental med.

Print this out and use to discuss with your doc.
---------
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).
===
As an abortive, this med is gaining some following here for its rapid, dependable action. Benefit is that a pill makes using it on the job, etc. easy; cost per dose is less than the triptans.

Your experience with the Imitrex pill is consistent with that of many here; too slow for CH.
----

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Re: new to the site but long time cluster head
Reply #8 - Nov 23rd, 2009 at 12:38pm
 
Hello Bill!
Glad you found us, sad CH's found you.
I used oral Imitrex with no success, but it did work in the shot form.  Be sure to check this out if you have success using the Imitrex shot:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I'm turning into quite the "Imitex Tip" girl.   Wink

PFD,
Angela
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Billiam
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Re: new to the site but long time cluster head
Reply #9 - Nov 27th, 2009 at 11:58am
 
Well thank you of all of your help so far as my sh**storm is raggin' full on I've called my neuro to see if it would be smart for me to switch from the depakote to another preventative but he doesn't think it's a smart Idea for me because they help so well with my epilepsy so to me I'll stick with it because I know this is hard to say but I'd rather go without a seizure then a CH to me it's the lesser of two evils but I also just today asked him if I could try the imitrex shot again he's going to look over my record and call me back here to hope also a quick question on the o2 can I use my ox tank for welding and just rig it with a mask???? because I can't see my neuro until jan and he won't write a script for the o2 without seeing me..... so thank you all again and hoping for a pain free day soon as it's been over 10 days for my last pain free day I need one soon need to sleep
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Re: new to the site but long time cluster head
Reply #10 - Nov 27th, 2009 at 12:10pm
 
Billiam wrote on Nov 27th, 2009 at 11:58am:
Well  is is  here to hope also a quick question on the o2 can I use my ox tank for welding and just rig it with a mask???? because I can't see my neuro until jan and he won't write a script for the o2 without seeing me..... so thank you all again and hoping for a pain free day soon as it's been over 10 days for my last pain free day I need one soon need to sleep

       You haven't been reading the o2 links.

               Potter
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Re: new to the site but long time cluster head
Reply #11 - Nov 27th, 2009 at 12:28pm
 
I have read them it says people have used welders O2 but just wondering if it's as affective hence the question and if I rig it right
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Re: new to the site but long time cluster head
Reply #12 - Nov 27th, 2009 at 12:30pm
 
Billiam YES YOU CAN!!

You can use your welding o2, it's exactly the same stuff just (i believe) different regulators. You have to have 100% pure o2 to get a good weld so it's equally as effective - go for it!!

good luck and let us know how you get on

Helen
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Re: new to the site but long time cluster head
Reply #13 - Nov 27th, 2009 at 12:38pm
 
Billiam wrote on Nov 27th, 2009 at 12:28pm:
I have read them it says people have used welders O2 but just wondering if it's as affective hence the question and if I rig it right

   The green one is the oxygen.

          Potter
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Re: new to the site but long time cluster head
Reply #14 - Nov 27th, 2009 at 12:57pm
 
this I know thank you
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Re: new to the site but long time cluster head
Reply #15 - Nov 27th, 2009 at 1:13pm
 
Bill there was a really good piece of advice given on this site once - take what you need and leave the rest.

I like it alot!

hope you're having a good TG weekend
Helen
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Re: new to the site but long time cluster head
Reply #16 - Nov 27th, 2009 at 1:20pm
 
check your pm's Billiam.

          Potter
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Re: new to the site but long time cluster head
Reply #17 - Nov 27th, 2009 at 1:29pm
 
thanks again for the help heres to hoping the O2 helps me like it's helped many before and vv2tours thanks for the link I will keep everyone posted on how it work fingers crossed hope the end is near and Li thank you this site has been a great help to me so far Wink
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Re: new to the site but long time cluster head
Reply #18 - Nov 27th, 2009 at 1:40pm
 
Billiam wrote on Nov 27th, 2009 at 1:29pm:
thanks again for the help heres to hoping the O2 helps me like it's helped many before and vv2tours thanks for the link I will keep everyone posted on how it work fingers crossed hope the end is near and Li thank you this site has been a great help to me so far Wink

That link is Marcs handiwork.

      Potter
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Re: new to the site but long time cluster head
Reply #19 - Nov 27th, 2009 at 1:49pm
 
Billiam wrote on Nov 27th, 2009 at 11:58am:
Well thank you of all of your help so far as my sh**storm is raggin' full on I've called my neuro to see if it would be smart for me to switch from the depakote to another preventative but he doesn't think it's a smart Idea for me because they help so well with my epilepsy so to me I'll stick with it because I know this is hard to say but I'd rather go without a seizure then a CH to me it's the lesser of two evils but I also just today asked him if I could try the imitrex shot again he's going to look over my record and call me back here to hope also a quick question on the o2 can I use my ox tank for welding and just rig it with a mask???? because I can't see my neuro until jan and he won't write a script for the o2 without seeing me..... so thank you all again and hoping for a pain free day soon as it's been over 10 days for my last pain free day I need one soon need to sleep


I don't think either of the medications that Bob suggested are seizure med alternatives.  Verapamil (preventative) is a blood pressure med, and Zyprexa/Olanzapine (abortive) is an anti-psychotic med.  Tell you doctor the names of them and see if you can take them with your currant seizure med.

Just a suggestion.
Good luck!
Joni
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Billiam
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Re: new to the site but long time cluster head
Reply #20 - Dec 2nd, 2009 at 6:56pm
 
Well everyone that has kept up with me on this thred I've been hitting my 02 following the tips and info thanks all but for me it helps only with the fantoms or shadows as I like to call them it kicks there arse in a way is good but for a kick down 9-10 kipper does nothing for me and I seem to be getting those more now since starting the trex shot it works but then the rebound kicks my arse I am thinking of stopping the shot and just dealing with the lower pain attacks. as for the keppra which is truely a anti seizure med but is now being tested for CH seems to have no major side effects for me but I haven't noticed a difference in preventing them as it's only been maybe a week I am also still taking the depakote too so I'll keep ya up to date if I notice any major changes
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Re: new to the site but long time cluster head
Reply #21 - Dec 2nd, 2009 at 8:40pm
 
Sometimes a full 6mg dose of Imitrex can keep the beast coming back, "rebounds".  Try the imitrex tip in the side menu, if you haven't yet.  That might tame beast a bit.  It's a God-send to me.
Keep up on the O2.  Only use the imitrex when you get a nasty breakthrough on the O2 for the CH your trying to abort.

Thanks for the update.

Angela
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