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first post! (Read 1141 times)
limonj1
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first post!
Apr 8th, 2014 at 10:47pm
 
Hi everybody. My name is Josh and I'm a 21 year old from new jersey. I am a nursing student and a college baseball player, so these attacks really come at unfortunate times. Senior year of highschool, I started getting horrible headaches once a day, typically around 2 o'clock, right before games. This lasted up until sophomore year of college, when I finally was introduced to a headache pain specialist in Hopewell, New Jersey. She diagnosed me with cluster headaches and thats that. Since then, I've been on verapamil, increasing the dose twice already. Imitrex has done nothing for me. I have seemed to discover my triggers as being dehydrated or not getting enough sleep, which both occur often in college. Red bull does the trick sometimes, but my key is to stay hydrated and sleep enough. I've found that chugging a red bull, then a water bottle, then laying in the shower for 20 minutes helps. Recently, Ive began receiving nerve blocks, which help for about 3 months then wear off for me. I know it differs from person to person. My doc says the next step is an oxygen tank, which is going to be very tough to use always being on the run. But for how bad the attacks get sometimes, it will be worth it. I am very thankful for this site, as it gives me comfort in times where nothing else does. Can't wait to read more about some tips and tricks to stopping these bad boys, and meeting all of you great people. Thanks a lot!!!
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maz
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Re: first post!
Reply #1 - Apr 9th, 2014 at 4:27am
 
Hi Josh, Welcome to your new family  Smiley

If the imitrex you tried was in tablet form they take too long to get into your system to be of much help. It comes in a nasal spray and auto injections too. The spray is better than the pills, but the injectables are miracle juice. They can abort a full blown CH in less than 10 minutes.

Some folks, including me take a pill before going to bed as we find it holds off the attacks for a while, so at least you get some sleep. I get a rebound headache from this but it is just the kind of headache that over the counter pills will cure (my favorite kind).

The oxygen is also a fantastic abort method. But you must use it properly or it won't work. You need a FLOW RATE OF 15 - 25 LITRES PER MINUTE AN A NON REBREATHER MASK. If you get either of those things wrong it won't work.  I keep my oxygen in the bedroom by the bed for when I am at home, and take the injections out with me. I never leave home without them. Small portable 02 tanks are available.

Keep reading here. In particular look for posts by "Batch" about his vitamin D3 regime. Dozens of people have found complete relief by following this regime. If you send Batch a PM I'm sure he will give you all the info you need. He's a great guy and he'll help you.

Best of luck
Maz.
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-dvb-
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Reply #2 - Apr 9th, 2014 at 2:48pm
 
Hi Josh and Welcome. I'll 2nd the D3 (Batch Regimen). Look for the thread "123 days pf..." in the Medications, Treatments, Therapies section. Also, I'm in Trenton, NJ. Feel free to send a message.
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Bob Johnson
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Reply #3 - Apr 9th, 2014 at 3:34pm
 
I trust that a specialist has considered a Cluser-LIKE picture.

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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New abotive not yet studied but worth considering.
Cephalalgia. 2014 Mar 24.

Complete alleviation of treatment refractory primary SUNCT syndrome with clomiphene citrate (a medicinal deep brain hypothalamic modulator).
Rozen TD.
Author information Geisinger Health System, Department of Neurology, Geisinger Headache Clinic, PA, USA.
Abstract
OBJECTIVE: To report the first ever case of primary short-lasting unilateral neuralgiform headache attacks (SUNCT) syndrome completely responsive to clomiphene citrate.

METHODS: Case report.

RESULTS: SUNCT is a primary headache disorder marked by frequent attacks of one-sided headache with cranial autonomic associated symptoms. When SUNCT is deemed medicinally treatment refractory, it can cause tremendous patient-related disability. Surgical treatment options are available including hypothalamic deep brain stimulation, occipital nerve stimulator placement or arterial decompression surgery, but these procedures carry significant morbidity. A patient presented with a 10 month complaint of multiple, daily short-lasting, right-sided headaches each lasting from 60 to 120 seconds in duration and occurring from 100 to 200 times per day. The head pain was associated with ipsilateral eyelid ptosis and conjunctival injection. The patient was diagnosed with SUNCT but was unresponsive to multiple recognized medicinal treatments. He had complete alleviation of his attacks with clomiphene citrate, a synthetic, non-steroidal, ovulatory stimulant that directly binds to hypothalamic estrogen receptors. The clomiphene was tolerated without any adverse events. A putative mechanism of action for clomiphene in the prevention of SUNCT will be presented.

CONCLUSION: Clomiphene citrate is a unique treatment for SUNCT and appears to be very safe and effective.

KEYWORDS: Clomiphene citrate, SUNCT, cluster headache, estrogen, hypocretin, hypothalamus, orexin

PMID:24662321[PubMed]
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The full text article mentioned in passing that this had worked on Cluster but no details. But author always catches my attention.
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Has been my favorite since this article appeared. Convenience of a pill (re. your work) and 1-3 trials should give you some idea of effectiveness.
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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


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« Last Edit: Apr 9th, 2014 at 3:36pm by Bob Johnson »  

Bob Johnson
 
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