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Greetings from Houston (Read 3108 times)
vica
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Greetings from Houston
Dec 12th, 2009 at 12:55pm
 
I just wanted to say hi to fellow sufferers. I am into 8th week of a cycle with no apparent relief in sight. Discovering this board really made a difference. Even the closest life-long friends have no idea what we are going through. How many times you have been told to “take an aspirin, lay down and take a rest”? Who ever named this condition a “headache” did us a tragic disfavor. Only my wife and daughter exposed to the nightly horrors of watching a grown man screaming and crying have a remote idea of the pain intensity. After reading testimonies on this board, at least I know I am not going insane. It does not make the pain go away but knowing that somebody understands gives me some comfort and strength to fight the demon.

I am 48 and suffer from CH-s for the last 15 years. Fortunately, my episodes are relatively speaking brief (2-6 weeks, once a year) and there are even years that I am spared. I only got diagnosed 5 years ago after a cycle developed while on vacation. That year I got my first taste of Kip 10 (trust me I do not utter number 10 in vane). Once on Imitrex and with a big O2 tank my life changed for better. Between the two abortives it was quite manageable to ride any episode and forget CH-s completely during gracefully long remissions. Because my cycles are so short it was never clear if Prednisone and Verapamil did any good or the cycle dissipated on its own.

This fall it came back with vengeance. The first sign that it is different is that oxygen stopped being very effective. If it managed to abort one hit, the next one would come an hour later and that one would be unstoppable. Imitrex was still effective but its effect lasted three hours max with a full dose. Eventually, I have hit the insurance caps for the Imitrex. My physician is quite capable and understanding and he gave me some Zomig samples. It did wonders so far. I am getting 8-12 hours relief and the first hit after that is manageable with  O2. What pisses me off is that my insurance is going to cover 8 pills per month.

Right now it works like a clockwork. Zomig-8 hours PF-hit-O2-2hr PF-hit.. repeat. I am dreading Monday as I will be fresh out of Zomig. The Prednisone and Verapamil do not seem to do any good for now.

Any suggestions from my new adopted family?
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Bob Johnson
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Re: Greetings from Houston
Reply #1 - Dec 12th, 2009 at 1:08pm
 
Couple of thoughts:
1. Imitrex injection has a greater initial punch than Zomig and so may be worth a try for someone who gets 10s consistently.

2. The Pred will abort a cycle within 24-36 hours but starting dose should be 80 to 100mg, especially if your experience has not yielded a benefit in the past.

3. Verap dosing and form are important. Even if it doesn't totally block a cycle it can reduce the intensity of attacks. Might print these two items and discuss with your doctor.

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: Dec 12th, 2009 at 1:09pm by Bob Johnson »  

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vica
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Re: Greetings from Houston
Reply #2 - Dec 12th, 2009 at 1:57pm
 
Bob,

Thanks for the response. It really really makes a difference to know somebody cares.

I might have been unclear in my post. I don't get 10's consistently (thank God!). I only experienced couple of them 5 years ago and they gave me a good frame of reference. This cycle it is solid 8ths with the occasional 9. Imitrex indeed has a good “punch” and it kicks in immediately (well it takes 10 minutes but I am not going to complaint about it). The trouble with it right now is that it wears off in the course of couple of hours and the next hit follows immediately. This cycle is unusual because the hits are so frequent (up to 8 times/day). Zomig fast dissolving tablets take 20 minutes to kick in (augmented with O2) but than they give solid 8+ hours of relief.

Thanks for the references regarding Prednisone and Verapamil. I started with 60 mg Prednisone last week and I am currently on 40 mg tapering it down. I have ramped up Verapamil to 480 (short acting, three times a day). What worries me is that there is no sign of any break. The hits seem to come the moment the triptans wear off. I have tried to “ride it bareback” couple of times in order to save some triptans and to give my body a break from the abortives. The hits consistently last 2 hours, than after one hour break a new one starts. Needless to say, I am nearing the edge
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Re: Greetings from Houston
Reply #3 - Dec 12th, 2009 at 2:15pm
 
Zomig NS works much faster.  Wink
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vica
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Re: Greetings from Houston
Reply #4 - Dec 12th, 2009 at 2:34pm
 
I have tried NS and it acts roughly the same speed az ZMT tablets. I think its effect lasts wee bit shorter though.

Anyway, I have no complaints about speed of Zomig acting. It is the fact that it is going to run out and there is nothing else standing between me and dancing the CH dance.

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Re: Greetings from Houston
Reply #5 - Dec 12th, 2009 at 2:54pm
 
Can you ask your doc for some samples to get you through? In the meantime, ask him to write a letter of medical necessity to your insurance company. Or have him write a script for more and pay for what your insurance won't cover if you have the means.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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vica
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Re: Greetings from Houston
Reply #6 - Dec 12th, 2009 at 3:20pm
 
Brew,

Thanks. Both suggestions make sense. My doc even responds to emails and he told me to come on Monday to pick up any samples that might be left. As far as the letter goes, that is in works too. However, I was informed that it is a long administrative procedure and it may take a month or longer to get approved.
Your last suggestion made me actually call the Walgreens and get a price for 8 tablets (~$300). Most importantly they will honor the existing script. That is not too bad. I am not swimming in money but if all else fails at least there is an alternative to the dance.

Thanks again. When in cycle it is hard to think clear.
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Re: Greetings from Houston
Reply #7 - Dec 12th, 2009 at 3:24pm
 
vica wrote on Dec 12th, 2009 at 12:55pm:
I just wanted to say hi to fellow sufferers. I am into 8th week of a cycle with no apparent relief in sight.

The Prednisone and Verapamil do not seem to do any good for now.

Any suggestions from my new adopted family?



Hi and welcome. 



vica wrote on Dec 12th, 2009 at 1:57pm:
I started with 60 mg Prednisone last week and I am currently on 40 mg tapering it down. I have ramped up Verapamil to 480 (short acting, three times a day). What worries me is that there is no sign of any break. The hits seem to come the moment the triptans wear off.


I'd have to say that pred having no apparent effect is uncommon, but when was the verapamil started?  If it's going to help, it can take maybe two weeks to have effectiveness.  How are side effects?  Will your doctor consider stepping up gradually a bit more?

Tell us about your oxygen use.  Non-rebreather mask, regulator to 15Lpm at least, staying on long enough?  Can that be improved?
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Bob Johnson
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Re: Greetings from Houston
Reply #8 - Dec 12th, 2009 at 4:17pm
 
The frequency of attacks and failure to get good response from the standard meds (for CH) are twoi signs that you may not have CH.

There are a number of disorders which present with headache but the underlying causal problem is not CH as a primary problem.

If you have not worked with a good specialist, suggest you consider finding one.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.




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vica
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Re: Greetings from Houston
Reply #9 - Dec 12th, 2009 at 4:48pm
 
The apparent ineffectiveness of prednisones what worries me the most. For the last two weeks the frequency of hits seem only to increase. I only ramped up on Verapamil last week so I am hoping it will eventually show some results.

Regarding O2, I am currently limited by  the 15 lpm regulator. I have found that that breathing through a mouthpiece (nose closed) works best. I am very careful  to not allow any leaks and utilize the maximum flow. When the oxygen is effective it kicks in fairly quickly, when not, even half an hour of breathing have no effect.
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vica
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Re: Greetings from Houston
Reply #10 - Dec 12th, 2009 at 5:00pm
 
Bob,

With all due respect I have been OFFICIALLY DIAGNOSED W/ CH 5 years ago by a physician that is on the recommended list on this board. My clusters up until now were fairly typical and reacted to the medication in a predictable pattern. My current doc is also knowledgeable neurologist.
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Bob Johnson
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Re: Greetings from Houston
Reply #11 - Dec 13th, 2009 at 8:13am
 
Found a couple of old files while looking for some options for you:

Frovatriptan for the treatment of cluster headaches
CEPHALALGIA 2004; 24:1045-1048

Report of a small study done at Jefferson headache clinic, Philadelphia, using Frovatriptan  as an added preventive medication in addition to Verapamil. It involved 17 patients and there are no other studies, to date, to give comparative experiences but it's an approach when the regular therapies are not working.

If you are not having inadequate response to your present meds you might give your doc a copy of this message.
_______________________________________________
[Member response to this report.]

Re: Frovatriptan as added preventive med.
Reply #3 - [82/09] at 10:57am     From my point of view I would like to add that I have had good to excellent success with Frovatriptan as an added preventative medication. Added in addition to 2 x 120 mg Verapamil SR per day, which works good for me most time of the year.

In Dec. 2008 I tried Frovatriptan and got almost pain free with 3 x 2,5 mg per day, one tablet taken every 8 hours. (My body weight is 106 kg) Frova took appr. 2 days to work good.

A couple of weeks ago my cluster headaches went worse and I started with 3 x 2,5 mg/day Frovatriptan again. Same good result as in Dec. 2008: Pain free after two days, just one "little" CH attack per night, during the first two nights.

After five days I stopped taking Frova, a couple of CH attacks came over the weekend but since then not much.

I prefer to use Frova as an additional preventative, rather than to "wait" for CH attacks and abort them with Sumatriptan s.c. Oxygen works very good for me to abort CH attacks.

With Frova I did not notice ANY side effects. In Dec. 2008 blood pressure and ECG were checked after two weeks of taking Frova: Normal results.

My headache specialist agreed to the 3 x 2,5 mg Frova treatment, but recommended regular BP and ECG monitoring.

I have not tried Naratriptan or Eletriptan.
==================
Headache. 2004 Apr;44(4):361-4.   


Eletriptan for the short-term prophylaxis of cluster headache.

Zebenholzer K, Wober C, Vigl M, Wessely P.

Department of Neurology, University of Vienna (Austria) Medical School.

BACKGROUND: A beneficial prophylactic effect from eletriptan 40 mg given to a single patient with cluster headache was observed. OBJECTIVE: To further evaluate the efficacy of eletriptan in the short-term prophylaxis of cluster headache. METHODS: We treated 18 patients; mean age, 40.5 years (standard deviation [SD], 9.9). The number of cluster headache attacks was recorded during a baseline period of 6 days, and during 6 days of treatment with eletriptan 40 mg twice daily. The primary outcome measure was the reduction in the number of attacks during the treatment period. RESULTS: In the 16 patients who completed the study (2 patients were lost to follow-up), the mean total number of attacks decreased from 10.9 (SD, 5.6) during baseline to 6.3 (SD, 3.7) during treatment with eletriptan (P=.01) The reduction in the number of attacks exceeded 50% in 6 patients. CONCLUSION: This small open-label study suggests that eletriptan 40 mg twice daily may be useful for the short-term prophylaxis of cluster headache.

PMID: 15109360 [PubMed - in process
========
========

Sometimes a change of the class of meds you are using is useful, here, away from the triptans to:

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.
------------
A number of us have excellent results with this as an abortive but, notice in the abstract, in a few individuals it stopped the cycle.
========

A few men here have given some highly positive reports on this approach:

Headache. 2006 Jun;46(6):925-33. 


Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

PMID: 16732838 
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« Last Edit: Dec 13th, 2009 at 8:15am by Bob Johnson »  

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Re: Greetings from Houston
Reply #12 - Dec 13th, 2009 at 8:57am
 
Thanks Bob.
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Re: Greetings from Houston
Reply #13 - Dec 14th, 2009 at 5:48pm
 
Oxygen seems adequate, although effective, then not.  Catching hits with it at an earliest possible moment can be helpful, which though may be hard to do when waking to a quick ramping hit. 

How goes it @ 480 verap, any change yet?  Taken three times a day, it may be protecting at 160mg per duration.  When at 480, I take 240 twice a day, maybe something like that can make a difference, 240 per duration.  And then again, there are times when an increase is needed.
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Re: Greetings from Houston
Reply #14 - Dec 15th, 2009 at 9:21am
 
My experience with Verapamil makes me agree with Kevin's comments. I often adjust dosage on an as needed basis.

I will add that trying a higher flow rate on the O2 might be a good idea when it fails to work at lower rates. The jump to 25+ lpm was the difference between night and day for me.

Not everyone needs super high flow and not everyone benefits from it, but some of us get far, far superior results with it.

Marc
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Reply #15 - Dec 15th, 2009 at 10:48am
 
It seems to be a consensus on this board that higher flow rates of O2 can help. I work at a hospital and as of last week I've got a permission to hook myself up to the nursing station O2 outlet whenever I need it. The achievable flow rate is practically unlimited.

Unfortunately, during this weird cycle I am getting consistently mixed results. When it works, O2 aborts the hit in less than 5 minutes. However some 40% of the hits simply do not budge. I have the impression that when it fails the pain gets even more intense (the volume affected by pain diminishes but the pain gets more sharp, if it makes sense?).

Finally I would like to point out that this is individual experience of mine and only during this season. Previously the oxygen was a silver bullet for me. I would like to encourage all fellow sufferers who haven't tried it yet (or tried it unsuccessfully at low flow rates) to give it a shot. It is definitely worth it.
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Re: Greetings from Houston
Reply #16 - Dec 15th, 2009 at 1:40pm
 
I played the game with an insurance company once that only would give me 12 pills a month.  They don't understand that all this does is cause us to stockpile between clusters and cost them more money in the long run.  Infuriating.

I don't have much experience with the treatments you're using, so all I can say is hang in there.  I've been there.
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Reply #17 - Dec 15th, 2009 at 2:30pm
 
Hey Anchor Yanker,

Thanks for the support. How is the weather in Missouri? I used to live in St. Louis. In fact it was Dr Escandon from WASHU that diagnosed me  with CH.

On unrelated note, I have just received a packet from my current doc full of various Zomig samples. They obviously cleaned up their sample shelf. It's early Christmas for me!   Cheesy
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Re: Greetings from Houston
Reply #18 - Dec 15th, 2009 at 2:31pm
 
I read through this topic kinda fast.  Did you mention a preventive?

I too had a bout 2 summers ago that was hit or miss with O2 knocking out the headache.  That's when I turned to my Imitrex injections.  I was pretty scared about giving myself a shot.  Shouldn't be to hard for you, lucky nurse gal  Wink.  I then was able to conquer the CH's I would get that "broke through" the O2.  I too felt the sharp different kind of headache that insured the O2 wasn't going to help this time.

Angela
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Reply #19 - Dec 15th, 2009 at 3:12pm
 
The beast is rather crafty in morphing its shape. What is true for one season can be past history for the another. Imitrex worked like charm two years ago. A cartridge would last me two days (splitting it of course). It is still effective but the pain returns with vengeance some 3-4 hours after the injection. In fact, I can count on it.

This season it's Zomig that does the trick. By now I expect the day it won't be so effective.

This board is actually tremendous help. 
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Re: Greetings from Houston
Reply #20 - Dec 16th, 2009 at 2:12am
 
I'm not sure how the weather is in Missouri, I've been on a ship in the Gulf of Mexico for a month.  But, with a little luck, I'll be flying home tomorrow evening and I'll give you a report.
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