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First Neurologist Visit (Read 1328 times)
Mikey85
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First Neurologist Visit
May 16th, 2012 at 3:21am
 
Hi everybody!

I have my first visit with my neurologist in a couple of weeks.  I'm kind of anxious.  I'm now in my second "identified" cycle.  I'm episodic with my first cycle lasting 6-7 weeks, my time in-between at about 4-5 weeks.  I'm about 2 weeks into this cycle and it's less intense this time. 

I'm on 150mg of Topamax daily as a preventative, which seems to reduce the frequency of the attacks that I get to mostly shadows, but since this cycle began I've had about seven break through.  So far my doctor has tried to prescribe Zomig, but the insurance was fairly quick to shoot that down.  They were willing to accept Maxalt which usually works on the first dose, but I've occasionally had to take two doses to alleviate the attack. 

The first cycle the Maxalt seemed to work faster (maybe within 30 minutes of taking the pill).  Now it's taking upwards of an hour or more.  I'm hesitant to try Imitrex since I have a sulfa allergy and from what I've found it is the only triptan with a sulfa interaction.  My other alternatives would be to try to convince the insurance that the zomig is medically necessary (that would be a fun fight) or see about another alternative. 

I'm interested in oxygen, but I'm not sure as to when I would need to begin the oxygen, should I start when I get a brief shadow or what, because i can have shadows all day for hours and then not have an attack or have an attack hours later.  I'm not sure that I would be good at judging when to use the oxygen effectively and so I'm not sure it's going to be the best option for me.  Can anyone clear up when and how to properly use oxygen as I'm leaning towards it as the most effective option since it seems to have the most immediate results from all of the reports and studies I've read.   

I've also seen very limited information on Octreotide.  Has anyone heard of or had experience with this? 

Also I found information about DHE as well, and I haven't looked into it much either. 

I'm suspecting that either nasal spray or injectables would be the fastest of my available options aside from oxygen, but I'm not sure what would be my best fit. 

I am open to changing my Topamax dosage.  Does anyone take a higher Topamax dosage than the 150mg as a preventative? 

Thanks in advance for any thoughts you can share on this!

Michael
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wimsey1
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Re: First Neurologist Visit
Reply #1 - May 16th, 2012 at 7:45am
 
Do get the O2. And there's no mystery here: when it hurts, or when you feel the shadows coming, hit it! I am chronic and can get hit 4-6 times a day, every day. I hit the first one with O2. If it persists, O2 and a double Monster. If it hits again, repeat as previously. Depending on what I'm doing, and how bad it hurts, the 4th hit of the day/night will find me reaching for the Migranal (similar to DHE) or the Imitrex. I use Migranal in spray form and it tends to last 24-36 hours/dose with two doses per bottle. The trex works more quickly but lasts only about 6-8 hours. Hope this helps! Blessings. lance
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Guiseppi
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Re: First Neurologist Visit
Reply #2 - May 16th, 2012 at 9:34am
 
No experience with the other meds they are suggesting. I'm with Lance, get the oxygen. It's the cheapest, fastest, most effective abortive I've ever used. Like Lance, I use it for shadows or attacks. AS soon as I fee the familiar tension, tingling, fullness in the ear, I fire off the 02 and send the beast packing.

The most common first line prevent is verapamil because of its proven track record. Worth printing out and talking 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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Bob Johnson
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Re: First Neurologist Visit
Reply #3 - May 16th, 2012 at 9:56am
 
Suggest that you print out the PDF file, below, and use it as a tool to discuss options with your doc.

This abortive is not widely used but has proven quite effective for some. Again, print and discuss.
--
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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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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I'm posting this abstract even though this med has not received much attention in the medical literature. However, the few articles I've seen the evaluations have been approving. It appears that Octreotide is worth keeping in mind as a secondary level abortive if the usual standard items have not been effective.
==============================

Ann Neurol. 2004 Oct;56(4):488-94.

Subcutaneous Octreotide In Cluster Headache: Randomized Placebo-Controlled Double-Blind Crossover Study.
Matharu Ms, Levy Mj, Meeran K, Goadsby Pj.
Sourceheadache Group, Institute Of Neurology, Queen Square, London, United Kingdom.
Ann Neurol. 2004 Nov;56(5):751.

Abstract
Current Practical Evidence-Based Acute Treatments Of Cluster Headache Are Limited To Subcutaneous And Intranasal Formulations Of Sumatriptan, And Oxygen. Two Small Randomized, Double-Blind Trials Suggested Efficacy Of Somatostatin In Cluster Headache. We Sought To Determine Whether Octreotide, A Somatostatin Analog, Is Effective In The Abortive Treatment Of Acute Cluster Headache. Patients With Episodic And Chronic Cluster Headache, As Defined By The International Headache Society, Were Recruited To A Double-Blind Placebo-Controlled Crossover Study. Patients Were Instructed To Treat Two Attacks Of At Least Moderate Pain Severity, With At Least A 24-Hour Break, Using Subcutaneous Octreotide Microg Or Matching Placebo. The Primary End Point Was The Headache Response Defined As Very Severe, Severe, Or Moderate Pain Becomes Mild Or Nil, At 30 Minutes. The Primary End Point Was Examined Using A Multilevel Analysis Approach. A Total Of 57 Patients Were Recruited Of Whom 46 Provided Efficacy Data On Attacks Treated With Octreotide And 45 With Placebo. The Headache Response Rate With Subcutaneous Octreotide Was 52%, Whereas That With Placebo Was 36%. Modeling The Treatment Outcome As A Binomial Where Response Was Determined By Treatment, Using The Patient As The Level 2 Variable, And Considering Period Effect, Sex, And Cluster Headache Type As Other Variables Of Interest, We Found That The Effect Of Subcutaneous Octreotide 100 Microg Was Significantly Superior To Placebo (P < 0.01). SUBCUTANEOUS OCTREOTIDE 100 MICROG IS EFFECTIVE IN THE ACUTE TREATMENT OF CLUSTER HEADACHE WHEN COMPARED WITH PLACEBO.

Pmid:15455406[Pubmed]

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Mikey85
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Re: First Neurologist Visit
Reply #4 - May 16th, 2012 at 1:36pm
 
Thanks all, I'm really leaning towards the oxygen.  I was just unsure as the shadows come so much during the day I wasn't sure if hitting the O2 4-5 times a day was normal, but sounds about right now. 

I've considered the verapamil, but I've gotten so used to the topamax and the side effects there being minimal for me that I'm hesitant to change to a different medication with a whole new set.  I've considered upping the dosage.  I've read reports of people being on upwards of 400mg, but nothing really consistent.  I've considered ramping to 200mg during cycle and dropping back to 150 maintenance wen out of cycle, but planning on talking that over with the neuro when I have my visit on the 29th. 

Thanks again, I really appreciate it!
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Mike NZ
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Oxygen rocks! D3 too!


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Re: First Neurologist Visit
Reply #5 - May 16th, 2012 at 5:04pm
 
Mikey85 wrote on May 16th, 2012 at 1:36pm:
Thanks all, I'm really leaning towards the oxygen.  I was just unsure as the shadows come so much during the day I wasn't sure if hitting the O2 4-5 times a day was normal, but sounds about right now. 


Don't worry about what is "normal". Once you get oxygen and find how well it works for you, you'll soon be singing it's praises.

Do read the oxygen info via the link on the left as there is some great material there to get the best from using it.
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