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Topic: It's my first post, read me. (Read 283 times) |
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Mac_Daddy
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It's my first post, read me.
« on: Mar 14th, 2006, 4:53pm » |
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My name is Mac and I am 33 years old. I've had CH's for about 3-4 years and have been misdiagnosed until a few weeks ago. Fianlly, I don't feel insane.
Question: What are the draw backs of taking Zomig so often? I feel no side effects but read that I should only take 4 per month. I have taken 16 in the last 14 days. Some 5mg some 2.5mg.
Question: I've been perscribed Verapamil but have read on this site that people are having a hard time getting off of it. If Zomig works do I need to start taking this? Will I create a tolerance for Zomig? What are the side effects of Verapamil? Can I be on Verapamil indefinitely?
I'm so glad I found this site. What an awesome source of information.
Thanks for any help on these topics
Mac
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Kris_in_SJ
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Re: It's my first post, read me.
« Reply #1 on: Mar 14th, 2006, 8:34pm » |
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Hi Mac,
Welcome to the family. I can't tell you much about Zomig, as I've never taken it, but I don't know any rule or warning that you should only take 4 doses a month! Zomig is often used for migraines - perhaps that's why the information you've read says that. If it works to abort your attacks, you're probably well within limits - ask your doc. It also sounds like you're taking pills, which are usually pretty useless where clusters are concerned because pills take so long to work. Zomig is also made in a nasal spray (acts much faster), which you might ask your doc about. It is absolutely not addictive. If I were you, I'd also read up on Oxygen. See the link to the left.
With regard to Verapamil - take it! For many of us, it's a wonderful preventative. It usually takes a week to 10 days at fairly high doses to kick in (480mg/day for me), but once it does, the frequency and intensity of the clusters greatly decreases. It can safely be stopped once your cycle is over, but needs to be decreased gradually. As far as I'm concerned, there's absolutely no need to stay on cluster meds once you are out of cycle. It's not hard to get off of - just takes awhile.
Hope this info helps. I'm sure others will be along with their own thoughts.
Hugs and PF Wishes,
Kris
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chewy
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Re: It's my first post, read me.
« Reply #2 on: Mar 14th, 2006, 9:00pm » |
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I've been episodic for 30 years.
I can speak to the verapamil. I use 480 mg when in cycle. Wouldn't be without it , have no side effects, and no problem coming off. Could be differant for you.
Most good medical advice is to terminate its use when the cycle is over
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thebbz
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Re: It's my first post, read me.
« Reply #3 on: Mar 14th, 2006, 9:56pm » |
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Mack,.
Zomig is one of many vascular constrictors. O2 is better.
You will not have much of a problem if your heart is in good shape, not a smoker, do not have high blood pressure, and are fairly young. I am not a doc so check out a google search of the drug and you will find out more. Always take drugs under the supervision of your doc.
hope that helps
jb
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Mac_Daddy
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Re: It's my first post, read me.
« Reply #4 on: Mar 14th, 2006, 11:02pm » |
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Thanks for the info.
FYI, I take the dissolvable Zomig and it seems to work in about 2-5 min. I have to pretty quick on the pill pop to head them off. I'll ask my Doc about the nasal spray, that sounds even better.
I've been shadow and headache free for two days. Hopefully I'll be able to have a dozen or so green beers on Friday. Do you think it's safe?
Mac
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AussieBrian
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Re: It's my first post, read me.
« Reply #5 on: Mar 14th, 2006, 11:35pm » |
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Drugs I can't talk about because I know nuttin'. Beer's another matter. It's a major trigger for a lot of CHeads, but not all, and you'll work out pretty quickly which category you fit into.
Cheers and beers,
Brian Down Under.
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Jasmyn
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Re: It's my first post, read me.
« Reply #6 on: Mar 15th, 2006, 2:51am » |
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Kris and that Aussie Brain guy covered basically both ends so all I will say is: Welcome Mac! 
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Jazz
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sandie99
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Re: It's my first post, read me.
« Reply #7 on: Mar 15th, 2006, 3:11am » |
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Mac,
warm welcome! 
You'll find lots of info & support right here when you need it. I'm glad that your found your way to this site. When you feel like venting about ch, this is the place to do it. Here's always people who understand exactly what you're going through.
What comes to Zomig... I tried the nasal spray and that did nothing to me. I did get side effects quickly. But verapamil was the med which really helped me - it sent my chronic ch into remission, which has been going on 11 months.
When I was taking low doses of verapamil (200mg and then 400mg), my low bloodpressure turned lower and I fainted few times, but when I begun to take higher (600mg) doses, I had no side effects at all.
I do hope that you'll find a treatment, which will give you PF time.
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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DonnaHar
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Re: It's my first post, read me.
« Reply #8 on: Mar 15th, 2006, 10:05am » |
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Welcome home, Mac. Glad you saw the light on the porch lit.
It would be great if we could get some info as to why Verap. doesn't lower blood pressure after a certain dosage. I've heard (read) this from many our cluster family members. I know some are taking doses up in the 900 mg's. and swear by it.
I'm going to start looking for peer-reviewed information.
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fireball
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Re: It's my first post, read me.
« Reply #9 on: Mar 15th, 2006, 12:20pm » |
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My husband had been prescribed zomig previously and I always try to do a lot of research re: meds.
The reason there is a limit placed on the amount you can use it each month is because of safety. My pharmacist explained that the FDA compares the risks against the benefits, and with this medication the risks of using it too much are extremely severe and can be life threatening. When testing the drug, this is the maximum dosage that has been proven safe to use. The risks are serious heart and intestinal problems. Also, Zomig has never been officially tested on clusters. This is one link w/ more info: http://www.healthsquare.com/newrx/zom1504.htm
Re: verapimil, I know that many people have great success with it. My husband didn't. His main side effect, even at the hire dose, what a much lower heart rate. He has always been very physically fit and it is low anyway. He felt tired, weak, etc.
You'll find a lot of great information on this site. And, just as important, you'll find a connection with great, caring people.
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Richr8
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Welcome Mac!
« Reply #10 on: Mar 15th, 2006, 8:28pm » |
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I would look to Oxygen as an abortive and I personally could not survive without Verap. I did have trouble getting off of it after my last cycle, but I may have tried to taper too quickly. One thing for sure, everyone has a different story to tell.
pf wishes,
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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burnt-toast
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Re: It's my first post, read me.
« Reply #11 on: Mar 16th, 2006, 3:18am » |
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Verapamil is fairly common in treatment. It is often combined with other meds. such as Lithium.
At higher doses leg pain/swelling can become a problem. Constipation seems one of the more common complaints - but this can be resolved with better diet and higher fluid intake.
Combination of 720mg Lithium - 1200mg Lithum Carbonate and 9mg Melatonin and a few Prednisone tapers seem to have done wonders for my CH.
However stepping up doses of Verapamil causes my legs to swell - stepping up doses of Lithium Carbonate causes my hands to shake. Sticking to a good schedule for taking meds. helps make the current dosages work most effectively.
Everyone is different - keep a good journal to help identify the right dosages/schedule for you. Talk with your doctor and pharmacist but use is typically discontinued by slowly tapering back the dosages. Chronic cases may require long-term or indefinite treatment.
Here are a couple good links to prescription drug information.
http://www.nlm.nih.gov/medlineplus/druginformation.html
http://www.drugs.com/
There's plenty of information, help and Support here.
Good luck on your journey.
Tom
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Gator
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Re: It's my first post, read me.
« Reply #12 on: Mar 16th, 2006, 3:58am » |
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I'm with the Oxygen Crowd. O2 at 15lpm via non-rebreathing mask works about 70% of the time for me. After that, it's on to the triptans. I am currently using Imitrex Injections, but I used to use Zomig Nasal.
Zomig Nasal worked great for me. It would knock out an attack in about 7 minutes. My doctor prescribed it to me as no more than 3 per day, even though the manufacturer recommended limit was no more than 2 per day. With a letter of medical necessity I was given 30 snorts per month and used every damn one of them, usually before the month was up. I never had any effect except pain relief from Zomig Nasal.
A lot of the so-called limits are imposed by insurance companies who don't want to pay for you to have the meds in the quantities that you actually need them.
The manufacturer recommended limit on Zomig is 10mg per 24 hour period. The closest the prescribing information for physicians comes to limiting you to 4 doses per month is where it says the safety of taking more than 4 doses per month has not been established. It is currently only labeled for migraine, but it does work on cluster headaches for a lot of people.
Which brings me to a very important Public Service Announcement for anyone who hasn't heard
Clinical trials for Zomig Nasal Spray as an abortive for CH are being conducted at the New England Center for Headache. They have extended their trial to June 2006 and need 5 more volunteers to participate.
To participate you have to make at least one visit to NECH where you will be examined and given 3 inhalers. One will contain 10mg, one 5mg and one a placebo. You attempt to abort three different attacks and rate your relief and side effects from each inhaler and return the data to NECH.
Anyone that has the time, is currently in cycle and within driving distance of NECH should volunteer to do this. It will only benefit all clusterheads in the end. This community should be on this like white on rice. The medical community isn't going to want to keep doing research for us if they can't get us to volunteer to help in the research. The more we participate when volunteers are needed, the more we will be invited to participate. How else are they going to find viable treatment options for us or dare I say a cure if we don't?
Call Lori, Gizella, Kathy or GeorgeAnn for further information about how you can enter this trial. The phone number of the New England Research Institute (NERI) is (203) 322-2748. Someone is available Monday through Thursday to answer your questions.
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