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Jennie
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New here
Nov 18th, 2009 at 2:07am
 
Hello,

My Name is Jennie I am a 30 yr old female

I have episodic clusters, I have suffered them for aprox. 6 years now. I have been poked, prodded, scanned, injected, and given every type of med. on the market.

And still every year, same day, same time the demon comes back, no matter what we try.

He comes to visit on Nov. 16th at 3pm and lasts till around Christmas.

I am currently taking 180mg of verapamil daily, which does not seem to do much good.

numbness on the right side of my face, the itching hairline, the feeling of your forehead wanting to explode across the room, the bell's palsy, and, and, and the list seems to go on.

sorry if I sound a bit bitter and crazed but I am now dancing with the beast, and am facing another 4 to 5 weeks of hell.  Smiley
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LeLimey
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Re: New here
Reply #1 - Nov 18th, 2009 at 4:06am
 
Jennie hi! It's nice to meet you, I'm sorry you have to be here but I'm very glad you are since there is no where better for a clusterhead.

You're on quite a low dose of verap - has your doctor talked to you about upping it? How long have you been on it? Have you ever tried it with a prednisone taper?

I'm sorry for all the questions but believe me, there'll be more! We'll do all we can to help

Have you currently got any abortive meds such as Imitrex?

Have you tried Oxygen? (My personal "Oh thank you God")

Have you tried using ice or heat? Strong coffee or energy drinks?

We'll help you all we can, we'll suggest stuff you can discuss with your doctor, we'll support you when you're down and we'll make you laugh with us as often as we can.. you're home now!  Smiley

Helen
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lorac
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Re: New here
Reply #2 - Nov 18th, 2009 at 8:13am
 
Hi Jennie
   Glad you found us here.   It may take a little time for the Verapamil to kick in , but then it works very well...but be careful if you also drink energy drinks as well, because a high dose of Verap, and taurine, can mess up your heart rhythms...It did it to me.
     I am finding that Kudzu root (613mg) in the am, and at noon, has helped me a lot as well.
    Keep reading, and you will find all your answers here.     You are no longer alone with this dreaded CH.
             lorac
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Roughneck
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Re: New here
Reply #3 - Nov 18th, 2009 at 11:12am
 
  Hi Jennie,
     We are all in this together. Sorry for your pain i feel that pain too. I am glad you are here. I am also in verap started 2 days ago. Its not working for me either. Like the guy said above me here it might take a while to start working.
Hang in there. Have you tried o2? I am getting some asap.


   


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Bob Johnson
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Re: New here
Reply #4 - Nov 18th, 2009 at 1:28pm
 
This protocol for use of Verap is widely used. Print for 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).
========
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.
==========

For your learning:

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Bob Johnson
 
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Jennie
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Re: New here
Reply #5 - Nov 18th, 2009 at 1:35pm
 
Hi there guys! Thank you all for the welcome and kind words.

I have been taking the verap for 3 years now daily, yes it is a very low dose. I am only allowed to up it when I am having an episode. and only up to 420mg a day says my doc. 240mg in the am and 180mg in the pm.

my doc says its because I have very low blood pressure to begin with and he does not want it going too low.

o2 works wonders when I can get my hands on it.

I have tried Imitrex with no luck at all, it was almost as if it made the pain worse.

Ice and heat work a bit but only for a second, an ice pack on my eye and forehead helps for about 5 min. then it all comes back, heat is the same way.

Energy drinks don't seem to help much either.

The only think I have found that honestly works is going to the ER, they put me on a drip, o2, and use a combo of Motrin, Benadryl, and prednisone which does the trick. But it's always a costly visit.

I have only had 5 episodes 1 a year same time etc.... Verap. did help the Last 2 episodes but it's just not helping this one.

But this one is diff. then the others. Usually I do not wake up with a CH. I have shadows when I wake up and can go about my day until 3pm then it hits and I suffer with them for the rest of the day until the we hours of the night, until I finally crash. But I was always able to look forward to the next morning when I would have many pain free hours before it would hit again.

But this time I wake up with them they are here all day. They wont stop. In the past I would have short breaks, the pain would let up at least for 30 to 45 min. It game me time to kinda catch my breath and try to get comfortable. But the breaks are shorted and shorter this time around.

I sure wish I had found this place years ago. I have been alone with this for a long time. I know no one  who has ever been through this. So it's really nice to know there are others out there.

Thank you guys!

Sorry for the novel
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Jrcox
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Re: New here
Reply #6 - Nov 19th, 2009 at 12:08am
 
For most high flow O2 does the trick. 15LPM up to even  25LPM or higher. If your doctor, really understands this condition, he should be willing to prescribe it. Id print out the o2 info from this site and bring it to him/her. 
Take care
Jrcox
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Jrcox jasonandmason jasonandmason@me.com jasonandmason  
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Jennie
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Re: New here
Reply #7 - Nov 19th, 2009 at 3:24pm
 
Wow thanks guys for all your help!!!!!!!

I called my doc and talked with him some more about my dose of verap. He told me I could try upping the dose a bit and see what happens. So yesterday I took 240 in the am and 240 in the pm, and today I took 240 in the AM. I'm not sure if it's just my mind set or the meds but it seems to be helping a bit.

Today I am having shadows and low hits, but they are not are not as bad as yesterday and the days prior.

I also talked to him about o2 and well he said lets try to play with the verap. first before we do o2. So we will see.
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Roughneck
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Reply #8 - Nov 19th, 2009 at 3:58pm
 
I wouldnt wait for a Dr.
Go get the oxygen from a welding shop.
Maybe have your husband go pick it up for you.
oxygen really works!
  you dont need a scrip for welding oxygen.
It is the same oxygen as the medical oxygen.
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angela.lambert
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Re: New here
Reply #9 - Nov 19th, 2009 at 4:02pm
 
Verap will only help as a prevenative..  The O2 will stop the beast in it's tracks when it hits if done properly, the abortive. They should be used together.

Have you tried the imitrex tip over on the side bar?  Maybe too much (6mg) is bad, I just started doing the 2mg shot and it works great.  Like the tip said, not much for the rebounds.  And leaves me feeling better than the 6mg shot did.

This morning, I stopped it with an icepack and way to stiff coffee  Tongue.  Trying not to use the imitrex if possible (spendy).

Good luck finding your "CH cocktail".
Angela
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angela.lambert
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Reply #10 - Nov 19th, 2009 at 4:05pm
 
I use welding O2 also.  I don't get a prescription. Welding O2 needs to be pure, if it isn't then the weld will not be "solid", it will be imperfect, and the weld will need to be redone.
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Jennie
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Re: New here
Reply #11 - Nov 19th, 2009 at 9:33pm
 
thanks guys

Yes I have tried the Imitrex with no luck had really bad rebounds, not worth it to me at all.

The hubby and I have been talking about welding oxygen alot he has been trying to get me to try it. He went on ebay last night and bought me a mask.

I don't have to have him go get it, he's a welder and has bottles in his shop. he uses oxygen for his plasma cutter. As soon as the mask comes in I will try it.

Is there a way to use it before I get a mask?
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barry_sword
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Re: New here
Reply #12 - Nov 19th, 2009 at 10:07pm
 
Hi Jennie. Just for you know I was scripted 240 mg Verapamil daily and it did not touch my CH's. I asked my neuro to up it 360mg and no luck. We tried 480mg and it worked, but took a couple of weeks at that dosage to kick in.
It is important to taper onto this med as well as off, I ended up in the ER once as I went up too fast and my BP dropped off.
My o2 is medical, with scripted regulators so I am not much help with taking it without this stuff, but hang in there!
Nice to meet you.

   Barry Smiley
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Jennie
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Re: New here
Reply #13 - Nov 19th, 2009 at 10:34pm
 
Thanks Berry! Nice to meet you too!

When I started the verap. 3 years ago it helped alot, I still had my cycles but they were not as bad and did not last as long.

And then this cycle hit. I have not had one this bad in years. I am only 4 days into this cycle so I know the worse is to come.

when you said taper onto and off of it, do you mean you only took it during your cycles?
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Re: New here
Reply #14 - Nov 19th, 2009 at 10:49pm
 
Jennie wrote on Nov 19th, 2009 at 10:34pm:
when you said taper onto and off of it, do you mean you only took it during your cycles?

I am currently taking one 80mg Verap daily while out of cycle, just trying something.
What I meant was do not just start taking the full dosage all at once, slowly ween onto your amount and the same when you want to stop, do it slowly. For the 480mg I started with two 80mg pills a day, then slowly added a pill every couple of days until I hit my goal of 480mg.
I hope this makes sense. I have a hard time explaining this sometimes, just easier to just do it.
The reason I am trying a solo 80mg of Verap while out of cycle is to have it in my system when I need to up the dose.
Hope this helps in some way. Smiley
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bejeeber
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Re: New here
Reply #15 - Nov 20th, 2009 at 1:29am
 
Hi Jennie,

Sorry for possibly getting into some beating of the 'ol dead Imitrex horse here, but just wanted to check - was it the Imitrex injections (the most effective form) you were using?  Smiley

Your doctor's wish to wait and see how the Verap works before trying O2 is nothing out of the ordinary.

That's because doctors are generally ignorant about this and only an idiot would advise such a thing.  Angry

Have you tried Zyprexa (abortive) yet per chance? I haven't, but I was noticing the veteran forum member here Bob Johnson reporting good success with it recently and it looks like an interesting and less expensive alternative to Imitrex.
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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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Jennie
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Re: New here
Reply #16 - Nov 20th, 2009 at 2:06am
 
Thanks Berry that helped! That also explained a little about why I felt the way I did yesterday when I upped the verap.

bejeeber

I have never tried Zyprexa, I will be sure to ask about it.

There is no doubt in my mind that my doc has little knowledge about CH as it seems there is not many docs who do.

I have only tried Imitrex twice, once was the tablets given to me by my Gen prac. when I first started having these stupid things. and the tablets only seemed to make it worse.

I have had one injection which was when I was admitted into the hosp. last year. I don't think it helped, it seemed like I had a bad rebound from it but, it was all foggy to me as it was a bad hit and all I really remember was the hubby taking me to the hosp. and then coming home, they poked me took blood gave shots, had the drip in me, use o2. It was all so cloudy for me.

I know that I also know very little About CH, thats why I'm here. all I know is it's not fun, and that I have never faced anything in my life like this.
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« Last Edit: Nov 20th, 2009 at 2:09am by Jennie »  
 
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Dallas Denny 62
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Re: New here
Reply #17 - Nov 20th, 2009 at 6:54am
 
Find a Doc who will give you Trex injections Jennie!  Pills and nose spray did not work for me either and don't for most CH sufferers.  As others here have told you, O2 is the cats meow for me and I use the shots only as a last resort.

Wishing you PFDAN;s

Dallas Denny
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I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!
 
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Re: New here
Reply #18 - Nov 20th, 2009 at 10:35am
 
Jennie,  nice to meet u but sorry we had to meet this way!  the only fortunate thing is that u found this site and these wonderful people!  they will help you  any way possible because the only ones how truly understands the words clustetheadaches is us and possibly our very close loved ones! i can only 3 pieces of advice! 1 get that 02 and the right mask asap   2  if u dont get any where with your doc or nuero find the closest migriane / cluster head ache clinic and get on the list  (upmc pitts / mayo clinic cleveland im sure there is one near ur metro area)  3  read read read this site!  good luck and pfw jennie!
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