New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Cluster Headache Specific >> Back after 4 months PF http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1435046806 Message started by Mark Olson on Jun 23rd, 2015 at 4:06am |
Title: Back after 4 months PF Post by Mark Olson on Jun 23rd, 2015 at 4:06am
I'm back after 4 blessed months pain free. It looks like I have gone back to the solstice schedule after one equinox excursion. I had a few shadows over the past two days and the headaches came back tonight.
The wife is really nervous about the D3 regimen, so she wants my neurologist to buy into it before I try it. My neurologist is open minded about it, but wanted to try Verapamil first. She gave me an 80mg per day prescription in February, and it seemed to end my last cycle. I have been taking the Verapamil since, but apparently it was just a coincidence that my cycle ended as I started taking it. So now it is back to the neurologist to see if she would prefer to up the Verapamil dose or is ready to let me try the D3. Is it possible that a low dose of Verapamil will work for a while, but then the body "gets used to it", and the headaches come back? |
Title: Re: Back after 4 months PF Post by tangerinearmy on Jun 23rd, 2015 at 5:42am
with all due respect to your wife ,the chances of finding a neurologist who will know anything about vitD is practically zero .
my question would be how come im still getting whacked even though im under the guidance of this neurologist . |
Title: Re: Back after 4 months PF Post by Hoppy on Jun 23rd, 2015 at 7:03am
The normal dosage of verapamil for CH's is 360-480mg/
day, some folk have to go as high as 900-1000mg/day to get relief. Maybe its time to seek out a Headache Specialist. Hoppy |
Title: Re: Back after 4 months PF Post by Bob Johnson on Jun 23rd, 2015 at 9:49am
Yes, Verap dose is much too low. Print the PDF file, below, and share with 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. ![]() |
Title: Re: Back after 4 months PF Post by Mark Olson on Jun 23rd, 2015 at 4:01pm
Thanks for the information. Very helpful.
I have a call into the neurologist. We'll see how she does. You may be right. It may be time to head up to Stanford... |
Title: Re: Back after 4 months PF Post by blacklab on Jun 24th, 2015 at 3:11am
Mark Hi, sorry you've gone back into cycle
But Can I just say something here, we all love our supporters whether they be wives partners or just friends ! So, in saying that, your wife doesn't get the ch hits ! so her nervousness shouldn't even come into the equation ! seriously ! Its you that is feeling the pain ! your pain decisions are yours to make, even after a nuerologist offers up their pain preferences ! supporters support ! they shouldn't be making decisions on your course of action in any way ! and I say that with the greatest of respect and acknowledgement of how important supporter are ! Take control, read up here, see your nuerologist ! I hope you take this in the context of how I'm trying to get it across ! My first doctor said the vit D 3 would kill me ! the second doctor refused to give me O2, the first neurologist didn't believe in ANY form of abortive ie imigran ! Take control yourself from the information you get, never ask the opinion and then let someone other than a medical professional or someone with first hand experience of clusters decide or stop you from a course of action that may help ! if you no what I mean ! your wifes nervousness shouldnt come into this. all the best colin |
Title: Re: Back after 4 months PF Post by Mark Olson on Jun 25th, 2015 at 3:29am
No offense taken. I appreciate all advice.
I am figuring out how to use O2. It has been pretty effective at knocking out my headaches last night and tonight. I use the hyperventilation technique, and it works pretty well without wasting much O2. Much improved quality of life. I have decided to fire my neurologist after two non-returned phone calls, and numerous clerical errors over the past year. I also get the feeling she doesn't have very much actual CH experience. I am now trying to get in to see the folks at the Stanford Headache Clinic. Just going through the paperwork hassles now. |
Title: Re: Back after 4 months PF Post by Mark Olson on Jul 9th, 2015 at 12:26am
I tried to talk to my neurologist about my Verapamil dose but the office never called me back. This is after the office staff screwed up my Verapamil prescriptions for several months and then never called me back after I left messages.
I decided to fire my neurologist. I got my PCP to refer me to the Stanford Headache Clinic, and got an appointment for today with Dr. Sheena Aurora. In the intervening time, my episode ended. The headaches were very mild, no more than a 5, and O2 aborted them very quickly. They only lasted 3 days, although I had some shadows, a red eye and stuffy nostril for about a week after that. I had a long meeting with Dr. Aurora today. After she checked me out, reviewed my MRI and headache diary, she agreed with the CH diagnosis. She prescribed a year's worth of Verapamil and added a prescription for Zomig nasal spray. I showed her the CH.com D3 data. She found it very interesting, and encouraged me to try it. That gets the wife bought in too. Since my last episode was so short and mild, she recommended we continue with the low dose of Verapamil unless it stops working for me. So next step is to make a Costco run... |
Title: Re: Back after 4 months PF Post by Batch on Jul 9th, 2015 at 1:38am
Smooth move Mark,
Good on you for starting the anti-inflammatory regimen... You won't regret it... You'll get extra points if you get your wife started on this regimen... The health benefits are too good to ignore... Only one word of caution... Fertility goes up exponentially when both of you are on this regimen... [smiley=yikes.gif] Take care, V/R, Batch |
Title: Re: Back after 4 months PF Post by Peter510 on Jul 9th, 2015 at 2:49am
Batch wrote.... "Fertility goes up exponentially when both of you are on this regimen".
Could that be because neither party gets headaches ??? Peter. |
Title: Re: Back after 4 months PF Post by blacklab on Jul 9th, 2015 at 3:16am Peter510 wrote on Jul 9th, 2015 at 2:49am:
;D ;D |
Title: Re: Back after 4 months PF Post by AussieBrian on Jul 9th, 2015 at 3:50am
It does nothing for a bloke's dignity when it's him who says, "Not tonight, dear. I have a headache."
Bring on the cure!!! |
Title: Re: Back after 4 months PF Post by Hoppy on Jul 9th, 2015 at 6:26am
. [smiley=frown.gif]
|
Title: Re: Back after 4 months PF Post by Mark Olson on Jul 9th, 2015 at 11:50am
HAHAHA!
Not to worry. I was fixed many years ago. |
Title: Re: Back after 4 months PF Post by MDR on Jul 9th, 2015 at 3:04pm
Stop I think you took it the wrong way.
Mark. |
Title: Re: Back after 4 months PF Post by Mark Olson on Jul 9th, 2015 at 3:32pm
Both my GP and the new neurologist told me that the regimen couldn't hurt, and it seems like the neurologist was interested in the D3 data.
I can see how there may be some questions about the various ingredients in the regimen and their contribution to the D3 absorption rates, but D3 levels seem to correlate to CH in many people. I don't view Batch's contributions as anything but trying to help. Everyone has the right to make their own decisions about the regimen. I appreciate the link to the fish oil article. While it indicates that it may not help with D3 absorption, it doesn't seem to hurt. I say, if you feel that way, don't take that part of the regimen. I plan on using the regimen, but I also plan on continuing on the Verapamil. It might have been more constructive to start this direction of this thread with something that sounds more like a challenge to a friendly debate rather than sounding like an attack. |
Title: Re: Back after 4 months PF Post by Traveller on Jul 9th, 2015 at 5:06pm
Someone tell me then, what possible purpose could be served by posting death rates of commonly prescribed CH drugs other than to attempt to scare people?
|
Title: Re: Back after 4 months PF Post by Hoppy on Jul 9th, 2015 at 5:16pm
Traveller wrote,misguided effort to steer people onto your beloved D3 cure.
But apparently you are so seized with your own "cure" that you now want to scare people away from remedies that have been working for years. Their is no "cure" as yet! The vitamin D-3 regiment is a CH preventative, and Batch was just pointing out, that if it works in keeping the beast at bay, it's a much safer option than all those other drugs with their nasty side effects. Hoppy |
Title: Re: Back after 4 months PF Post by Traveller on Jul 9th, 2015 at 11:39pm
Hoppy you are correct. I should have used the word "remedy" or "preventative" as you suggest. In Batch's defense he has never claimed his regimen is a cure. I stand corrected.
|
Title: Re: Back after 4 months PF Post by Sean McE on Jul 10th, 2015 at 12:12am
Now I have to speak up. Traveler, I think you took it out of context. Not long ago a member here wasn't allowed to use oxygen to abort a ch because his wife was extremely concerned about safety issues and didn't want it in the house. People here went to lengths to explain that any safety issues could be handled with common sense and knowledge. I don't remember how it worked out for him but what a shame cause oxygen is such an effective tool to kill the pain.
Same thing here, if one goes back to the first post. My read was that his wife was concerned about the risks of the d3 regimen and Batch's post was an attempt to show the risks (or lack of) of a bunch of commonly prescribed drugs as a comparison to the relative safety of the vitamin regimen. In other words, the risks of the vitamin regimen are less than the risks we already accept day in and day out. I saw no scare attempt. Knowledge is power and an informed person can make his own decisions wisely if he uses that knowledge to his or her own advantage. Sean |
Title: Re: Back after 4 months PF Post by blacklab on Jul 10th, 2015 at 6:02am
Geeez,
what possible offense or line could have been crossed, presenting facts ????????? To often we are told that there are possible side affects to taking drugs, to bury ones head in the sand and take offense to it being put out there, with actual facts !!!! Then, a cheap swipe at batches efforts on the vit regime. SHAME ON YOU TRAVELLER ! There have been a few knockers of the regime, some have been quite adamant on the potential health risks associated with the regime, generally its disgruntled, opinionated people with out them even researching the regime. I'm glad I now know the facts about fatalities of certain drugs and the fact that there has been no documented record of a death taking the quantities of vit D that we do on the regime. certainly believe also that everyone has the right to an opinion and to disagree with what someone has to say or their beliefs ! but when someone gets upset when someone puts up " documented factual evidence" I draw the line ! was it suppose to be a secret ? Everyone gets the opportunity in life to make calculated decisions by the information presented to them, not by only reading the drug companies speel. I'm sure your aware now traveller that batch was responding to someones hesitation and safety taking the vit D and thought that drugs were safe ! considering your reference to fishoil, I'm somehow picking that this is more than the fact that batch presented drug fatality figures. As far as your statement suggesting batch or the regime has no place on this forum ! and nothing to do with CH, time to stop smoking whatever the hell your smoking pal. regards colin |
Title: Re: Back after 4 months PF Post by BarbaraD on Jul 14th, 2015 at 8:27am
OK, kids, calm down. Traveler stated an opinion.. Batch didn't take offense so let's all calm down..
that's what the purpose of this forum is.. ask questions - get answers.. remember? And sometimes we "write" things in a way that would sound a lot different if we were talking one on one. Now Traveler.. back in 1998 (when I got on this board) we were all looking for something to stop the pain and not getting very far. We exchanged "recipes" and what worked for this one and what worked for that one and some really "strange" things over the years. The reason we get a little defensive about Batch (and we do tend to do that) is that he's done so much research that's helped so many of us that we kinda respect him and what he says. To be honest I don't understand about half of what he says, but just know most of it works for ME. And I love him for that. But DO ask questions and get the answers you need. That's what we're all seeking. And the rest of you - calm down - and play nice.. :-* :-* |
Title: Re: Back after 4 months PF Post by BarbaraD on Jul 14th, 2015 at 8:31am
PS... Traveler.. PM Batch and give him your phone number.. You'll find out he's a really neat guy.. Just don't get him started on politics :) - trust me on that one.. :-*
|
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |