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Results of my headaches specialist appt (Read 4155 times)
Putter
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Results of my headaches specialist appt
Jul 15th, 2010 at 4:13pm
 
Hi,
I saw my doctor yesterday and here is what he said:
We spoke about treating the cluster (imitrex or with oxygen) so I have the prescriptions.

Then we spoke about breaking the cycle.

He told me to go on prednisone for 2 weeks – one week: 7 pills per day, then during week two, reduce each day by one. And go on Verapamil 180 mg twice a day.

He sent me for an ECG in his office in case he feels he needs to increase the dosage of verapamil.

He mentioned if the prednisone and verapamil do not work well, then we could talk about an occipital nerve blockage.

Does this sound promising???

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Bob Johnson
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Re: Results of my headaches specialist appt
Reply #1 - Jul 16th, 2010 at 9:31am
 
Yes, a conservative, mainline approach to cluster. Good track record on these meds for effectiveness and safety so that he has a deep backgound of experience against which he can check your response to that of many others.

Your contribution: patience!!; don't muck with dosing without his O.K.; read the material you will find here, starting with the buttons (left) and below.
==========




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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wimsey1
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Re: Results of my headaches specialist appt
Reply #2 - Jul 17th, 2010 at 9:08am
 
The only thing I would add to what Bob has said is to keep a list of preventatives and abortives that you might  but have not yet tried, just in case...For myself, hope is always easier to sustain when I know chopping my head off isn't the only solution left. Sounds like you've got a good doc there. Good luck and God bless! lance
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Re: Results of my headaches specialist appt
Reply #3 - Jul 17th, 2010 at 11:11am
 
You have a doc who did his homework. Pred and vferap are the most typical and may work for you. They did for me at first. But they do not treat an accute ha attack. That's what the O2 does. Would be curious toknow what lpm he prescribed. anything lest than 12 lpm will not do much for you, and the mask is critical. If doc pescribed less than 12 lpm, ask for more or PM me for other legal options that do not require a script. Spend the $29 and buy an  O2PTIMASK. I did and it was a miracle once I got o2 flow up of 15 lpm. I now use 25 lpm and abort ha's in 15 minutes. IMHO that is the only way O2 works and it is 90% effective at those flows.

Not a fan of occipital nerve blockage. There are much more effective options with less side effects and less risks if you visit clusterbusters.com and read about dosing. Some legal, some not.

O2 and dosing are the most effective short term and long term solutions. But read, read and read again then take action. Develop a plan and execute it. Being in control is crucial to your state of mind. You cannot let provides torment you with their lack of knowledge or willingness to go to the limit to provide you with relief. But again. Get the right O2 set up first then consider your course of action.


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boski
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Re: Results of my headaches specialist appt
Reply #4 - Jul 17th, 2010 at 11:26am
 
Occipital Nerve Blockade

I got one didn't  see any side effects and I'm still here.
Did stop the deadly pain for some time. I would say a week.

Going in for it once again because Doc doesn't like me shooting
Imitrex everyday on the long term.  3 - 8 times a day.  I'll
let you know next week what the results are of ONB. 

I'm on Verap.  240 day 360 night
           Topo   100 Night
Just got O2 Mask today
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Bob Johnson
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Re: Results of my headaches specialist appt
Reply #5 - Jul 17th, 2010 at 12:44pm
 
Just noticed that you Verap dose is rather low--by our experiental standards. Following is a widelyl used protocol developed by one of the old line headache docs.
====

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.


======
This is a "mandatory" disclosure! The problem mentioned is not frequent or so serious that you should avoid the med. But print out both these articles for your doc.

Source: American Academy of Neurology
Date: August 13, 2007
More on: Headache Research, Headaches, Pharmacology, Heart Disease, Diseases and Conditions, Vioxx

Drug For Cluster Headaches May Cause Heart Problems
Science Daily — A drug increasingly used to prevent cluster headaches can cause heart problems, according to a study published in the August 14, 2007, issue of Neurology®, the medical journal of the American Academy of Neurology. Those taking the drug verapamil for cluster headaches should be closely monitored with frequent electrocardiograms (EKGs) for potential development of irregular heartbeats.

Cluster headache is a rare, severe form of headache that is more common in men. The attacks usually occur in cyclical patterns, with frequent attacks over weeks or months generally followed by a period of remission when the headaches stop.

"The benefit of taking verapamil to alleviate the devastating pain of cluster headaches has to be balanced against the risk of causing a heart abnormality that could progress into a more serious problem," said study author Peter Goadsby, MD, PhD, DSc, of the National Hospital for Neurology and Neurosurgery in Queen Square, London, UK, and the University of California, San Francisco and a member of the American Academy of Neurology.

The study involved 108 people with an average age of 44. The participants started taking verapamil and then had an EKG and an increase in the dosage of the drug every two weeks until the headaches were stopped or they started having side effects.

A total of 21 patients, or 19 percent, had problems with the electrical activity of the heart, or irregular heartbeats, while taking the drug. Most of the cases were not considered serious; however, one person required a permanent pacemaker due to the problem. A total of 37 percent of the participants had slower than normal heart rates while on the drug, but the condition was severe enough to warrant stopping the use of the drug in only four cases.

Goadsby noted that 217 people taking the drug were initially supposed to take part in the study, but 42 percent of them did not have the EKGs done to monitor their heart activity. "Many of them said either they or their local services were reluctant to undertake such frequent tests, or they were not aware of the need for the heart monitoring," he said. "Since this drug is relatively new for use in cluster headaches, it's possible that some health care providers are not aware of the problems that can come with its use."

Note: This story has been adapted from a news release issued by American Academy of Neurology.


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boski
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Re: Results of my headaches specialist appt
Reply #6 - Jul 17th, 2010 at 1:30pm
 
Hey Bobby:

If you were talking about my verap!  Yeah! I used to take a lot
more.  But she is nervous about heart block and my heart
rate is low to start (55) now around 50.  I told her I'd like
to up it but she said not with the last EKG she got.  I don't know,
I can only ask.  She would go way higher on things before.
Have gone to her for last 7 - 10 years.

If your talking about Putter then I think it's starting there
then would ramp up can't just take a big initial hit of verap.
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Re: Results of my headaches specialist appt
Reply #7 - Jul 17th, 2010 at 2:03pm
 
Hey Putter,

This may be stuff you're already aware of, so forgive me if it's old hat - I just hate to see anyone slipping thru the cracks, not having seen it yet:

Imitrex - These are hopefully injections you've been prescribed, not pills, and they'll make for a solid backup in case you can't get to the O2. This imitrex tip is critical: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Then you'll want to get set up with a non rebreather mask and hi flow regulator for the O2 as outlined in the oxygen info link to the left of this page.
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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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Re: Results of my headaches specialist appt
Reply #8 - Jul 18th, 2010 at 10:56am
 
Thanks all, your comments are great to read.
So I have been on those meds for three days and was feeling so good, that I decided to power walk; ended up with a moring attack. Yuck. Used Imitrex as the O2 hasn't arrived. It should be here tomorrow.  The doc prescribed 8 lpm. Based on the comments, it doesn't sound like enough so I will have to get that changed. The supplier tells me they are supplying their best mask; better than a non rebreather mask. I am not sure what kind it is yet.
You are right Bob, the verapamil is low compared to others and is not inline with the literature you attached. At least with the ECG results he will know if it can be increased. I wonder if the dosage has anything to do with my regular heartrate/ my weight etc.  I return to the Doc on July 29.  Since this is the start of my cluster period I wonder if by the time I reach the mid portion, we would need to increase the dosage? At which point I get minimum 2 per day, up to 4. My ch increase in severity and quantity with each cluster period (usually every 18 months or so - but fortunately the last bout was 3 years ago).

Regarding Imitrex - I take the imitrex nasal spray. I was getting rebound attacks with the needles.
Boski, 3 - 8 per day ouch; that is horrible.
Lance - I will keep that list going; I guess it would have been a good time this morning to try red bull, but I forgot.
bejeeber - nothing is old hat, I appreciate the info.

Queston: What can I expect when I start to taper off the prednisone?
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boski
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Re: Results of my headaches specialist appt
Reply #9 - Jul 18th, 2010 at 1:44pm
 
Hey Putter:

I wouldn't be surprised if he ups your verap. at some point
soon. As I came off the pred tapper it was a killer as the pain
intensity increased greatly.  Order the o2 mask on this site,
I did the other day just got it and I have to say it is much
better than any mask you get from the O2 rental
companies.  No outside air leaks in and at $27.50 Plus ship
its worth it.  Nasal works for you that's cool. I hated
spraying that up my nose and it didn't do it for me.
For some exercise helps but if its hot I think its best to keep
heart rate lower than to get it up.  That little guy in your
head really doesn't want you felling good or having fun. 

I hope you find your answer soon.
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boski
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Re: Results of my headaches specialist appt
Reply #10 - Jul 19th, 2010 at 2:25pm
 
"ONB" Shots went fine, no problems or side effects so far.

Should any rear there nasty little heads I'll drop a line.

As for high Flow O2 she didn't really love the idea. Oh well
If it works I'm doing it. She would only prescribe 10 lpm.
Welding O2 also wasn't high on her list. dang I'm just
batting 0 with her today.  Going to call around to see what
they are charging for medical O2 around NYC.

So there you have my results for Doc. visit today.

Luck to all out there.

Update: 7/20 9:30 No Ch hit since shot and I slept like a
baby, well maybe not a baby but a lot better.  Smiley
Small steps baby small steps. Head is ok in shot location
not sore yet.  I will follow up again.

Update: 7/24 Had my buddy over 23rd 2hrs after falling
asleep the usual and 7/24 12:20am now you see no sleep
once again.  Better then before. 
600mg  Ver
125mg  Top

Walking Zombie but its getting close I think. No job so no
brain is ok I guess.  Might help me find a job, everyone so
nervous that someone is going to take a job. 
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Re: Results of my headaches specialist appt
Reply #11 - Jul 19th, 2010 at 2:35pm
 
Also check out high flow regulators on E-Bay. My wife is always on the look out and recently snagged me a 25 LPM for $25 that fits my E-Tanks.

Joe
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Re: Results of my headaches specialist appt
Reply #12 - Jul 20th, 2010 at 7:10am
 
Hi Leanne, sorry you are back in cycle after such a long break from the beast. I have used a Prednisone taper a few times and it does stop the hits in their tracks but hate the side effects.
I asked my neuro for a higher dose of Verap and he agreed. I take 480mg daily and it works very well, so far.
Also I, with the help of Pete, got him to script me 25 LPM o2 with the new o2ptimask from the ch.com store, works great! I do not know how many CH sufferers in Canada have a script for that high of a flow rate for aborting CH's. I am thinking not many.
Contact me anytime if I can be of any help or just to say hi!
Hugs from me and Angie  Smiley
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Re: Results of my headaches specialist appt
Reply #13 - Jul 20th, 2010 at 8:20am
 
Hey again, Putter. Just curious what your O2 supplier thought was better than a non-rebreather mask? lance
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Re: Results of my headaches specialist appt
Reply #14 - Jul 23rd, 2010 at 2:32pm
 
Hi Lance,
Now that  have the mask they "claimed" to be better, I see it is not at all. I am ordering the one at the CH.com store.
Last nights attack was so horrible. I used the O2, and it subsided for 90 minutes and then returned with vengence.
I am tapering off the prednisone for the next 7 days. On the 7th day is my next specialist appt. and I will talk to him about upping the dosage of verapimil.
This whole "break the cycle" route - I don't have much confidence in it.
Hey Barry - long time no chat. I hope you and Angie are doing well.
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Re: Results of my headaches specialist appt
Reply #15 - Jul 24th, 2010 at 7:35am
 
Leanne, sounds like you have a doc that at least is willing to work with you. For your next visit read and print off the o2 info to your left, a higher flow rate of at least 15 LPM will make a huge difference in the amount of time it takes to abort a CH, and every second counts. Also, the o2ptimask was designed for CH sufferers, you must get one of them.
Verap & Pred. do not break a cycle, they just really help control one. You will find your level of Verap that will help ward off the beast. Also there is a few side effects, such as swelling, mine are my calves, and ekg's are important while on that med.
PF wishes buddy, hang in there, this will take time.
  Barry Smiley
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Re: Results of my headaches specialist appt
Reply #16 - Jul 24th, 2010 at 7:49am
 
Putter wrote on Jul 23rd, 2010 at 2:32pm:
Now that  have the mask they "claimed" to be better, I see it is not at all. I am ordering the one at the CH.com store.

Last nights attack was so horrible. I used the O2, and it subsided for 90 minutes and then returned with vengence.

This whole "break the cycle" route - I don't have much confidence in it.


Best of luck with the O2 mask. The docs and O2 specialists are primarily familiar with respiratory clients. Any "contamination" from outside air rather than breathing pure O2 will reduce or negate the effectiveness. You need to hyperventilate on the pure stuff and stay there for a good 10-15minutes after the attack aborts.

And don't give up hope on breaking the cycle. It's an important concept with ch's. Not easy, and there's no cure, but the pain and the attacks can be managed. You'll find the silver bullet that works for you. Doing so has now become you're #1 hobby, so you can have real hobbies later.

Blessings, and hang in there! lance
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