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Hello from new member (Read 1635 times)
neno
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Hello from new member
May 19th, 2011 at 1:26pm
 
I am 46 years old male.  I got the first attack in 1995. and it lasted about 15 days. From 1996-1998. my cycle lasted about 2 months and then I was pain free until 2002. Then follows the madness, and it last 6 months without stopping, in the worst phase I had several attacks a day. From 2002 until about 20 days ago I was without pain. Only rarely that specific but very mild pain appeared to remind me that the beast it is still there somewhere. And now it started again. Thanks to my neurologist, I got the oxygen equipment. And its work Smiley
Usually, after only a 5 minutes inhalation of 12 lpm pain disappears, however  I inhale the oxygen for another 5 minutes. The problem is that the next attack occurs very quickly (45min - 1 hour), so it seems to me that oxygen only postpone the attack. From 19 - 23h I have about 4-5 attacks, every time I inhale the oxygen and then, at the last attack before bedtime, I drink imigran. Does someone have similar problems with oxygen? Am I doing something wrong? Can I use oxygen so often?
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Potter
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Re: Hello from new member
Reply #1 - May 19th, 2011 at 1:32pm
 
Try staying on the oxygen longer.  It's safe.

     Potter
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Guiseppi
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Re: Hello from new member
Reply #2 - May 19th, 2011 at 4:02pm
 
I had the same problem. I used to take an oral cafergot when an attack started, then start huffing the 02. 02 knocked it down, cafergot would keep beasty away for many hours. This last cycle, at the suggestion of several on the board, I replaced the cafergot with a sugar free red bull. I drink one down as I start huffing the oxygen. It seems to speed the abort time, and it prevents the come backer. Might be worth a shot.

Joe
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Batch
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Re: Hello from new member
Reply #3 - May 20th, 2011 at 7:39am
 
Neno,

What you're experiencing with oxygen therapy is quite normal.  You've already received some good advise on how to lower the frequency.

We did a study of oxygen therapy methods collecting data on over 600 aborts and found that when abort times are short like yours, the frequency of CH tends to increase.  This increased frequency of CH attacks tends to go away by week 3 to 4 after starting oxygen therapy and it drops significantly by week 6 to 8.

We also found that CH'ers who stayed on oxygen for at least 15 minutes had a much lower incidence of "come-back" CH attacks.

Take care,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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neno
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Reply #4 - May 20th, 2011 at 10:23am
 
Thank you all for your advice. First 10 days of the cycle I was without oxygen, with 1 strong and long attack by day (2,5 h. or 1h with imigran). Oxygen is a relief, the problem is that the pain does not cease completely. I am constantly under some mild attack, strong attack I have 5-6 per day. I spent 2000 liters of oxygen in 4 days (too much?  Cheesy) Is it "normal" headache and mild dizziness side effects inhaling too much oxygen?
For the prevention my Dr. has recommended me Lyrica (pregabalin), and says that some patients responded well. If it doesn't work, combination with prednisone and verapamil.
Has anyone tried Lyrica?
Neno
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Bob Johnson
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Re: Hello from new member
Reply #5 - May 20th, 2011 at 11:09am
 
This is the only report I've found.
----
Cochrane Database Syst Rev. 2009 Jul 8;(3):CD007076.
Pregabalin for acute and chronic pain in adults.

Moore RA, Straube S, Wiffen PJ, Derry S, McQuay HJ.

Pain Research and Nuffield Department of Anaesthetics, University of Oxford, West Wing (Level 6), John Radcliffe Hospital, Oxford, Oxfordshire, UK, OX3 9DU.

BACKGROUND: Antiepileptic drugs have been used in pain management since the 1960s. Pregabalin is a recently developed antiepileptic drug also used in management of chronic neuropathic pain conditions. OBJECTIVES: To assess analgesic efficacy and associated adverse events of pregabalin in acute and chronic pain.

[edited for length. Technical data deleted. --BJ]

THERE IS NO EVIDENCE TO SUPPORT THE USE OF PREGABALIN IN ACUTE PAIN SCENARIOS.

PMID: 19588419
=========
If you shift to Verapamil, this protocol is widely used and the high dosing reflects our collective experience.
--

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).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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« Last Edit: May 20th, 2011 at 11:17am by Bob Johnson »  

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neno
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Re: Hello from new member
Reply #6 - May 26th, 2011 at 3:17am
 
Tx
Now I'm  using lyrica 8 days, still without any results
Neno
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wimsey1
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Reply #7 - May 26th, 2011 at 8:36am
 
Welcome, neno. Two things. You asked about dizzyness from O2 use and the amount used. It's easy to use up 2300 liters rather quickly when you're getting hit 3-4 times a day, and breathing 15lpm for 15-30 minutes. Just do the math. That dizzyness might be the hypoxia kickin' in. It's a good thing. I can't imagine why your dr thinks Lyrica is a good front-line preventative for CHs. Sounds suspiciously uninformed. I don't want to sound like I'm bashing your doc, but we have found many are so much more comfortable with prescribing certain meds with which they are familiar, than they are in dealing with CHs, with which they are completely unfamilair. You're going to have self-advocate here. READ, read and read some more. Take notes. Bring them to your next visit. And push for some stuff that has a broader base of support and positive research results. If you don't, no one else can or will. Blessings. lance
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bejeeber
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Re: Hello from new member
Reply #8 - May 26th, 2011 at 11:49am
 
Hey Neno,

What Wimsey said.

Good thing you're asking questions here - this is where so many of us have learned what works.

Plus I see your mentions of imitrex. Looks like you have the pill form? If you ever need imitrex again for a back up for the O2, it can be very advantageous to know that injections, or even inhalers are much more effective for aborting CH attacks.

I don't know if pregabalen affects CH anything like it's cousin gabapentin (neurontin) does, but I know that with neurontin it can take a couple weeks to fully kick in, and at that point for me it has lessened the frequency of attacks by 50% or so.
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« Last Edit: May 26th, 2011 at 10:14pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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neno
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Re: Hello from new member
Reply #9 - May 27th, 2011 at 6:37am
 
My neuro is a headache specialist. She also recommend a combination of prednisone and verapamil (if lyrica does'n work) but I opted for lyrica because of minor side effects compared to verapamil and prednisone. Last night I slept first time without imigran and without night hits.  Smiley .20 hours pain free. I take imigran pills because my nose is completely blocked. So, I kill atack with O2, and after 45 min. tablet start to work. Injection is not an option because of insurance policy in my country. (Even the oxygen I have to pay  Angry ). Thanks to this site, changing the method using O2, it is much easier to withstand attacks.
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Guiseppi
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Re: Hello from new member
Reply #10 - May 27th, 2011 at 9:57am
 
Glad to hear your getting relief, that's great news. Insurance companies. Angry Yeah. They can be a little unsympathetic at times can't they.

Joe
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