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Hello everyone!!

Have you registered on the Clusterbusters “Patient Registry” yet?

Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.

By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation.

Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.

This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.

People from all walks of life, all ages and every description, suffer from cluster headaches.

We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.

As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.

Be a part of a better future for cluster headache patients and participate in our registry.

As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the ClusterbusterÂ’s Administrative panel and members of its medical advisory board.

Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.

Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion.

To participate, please go to this link:

http://tinyurl.com/n9ou73a

Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference.

Even if you can't make the conference, we'd love to have everyone here on the registry.

Thank you

Bob Wold

Clusterbusters

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Thanks to everyone filling out the questionnaire.

Even if you wouldn't ever want to take part in any study or survey, it will help us if everyone fills it out. It will give us important information on where we are located generally, where our reach has expanded to, basic numbers on gender etc.

This will also always be open and building and I would especially like all of our long time members to get listed on this important registry.

Don't worry, none of the info will never be shared with anyone outside of a medical setting. You won't be getting emails selling you toothpaste ;-)

Also, if anyone is concerned about completing it and having an IP number associated with your submission, you can print it out and mail it to us and we will enter the information.

You can also do the same with anyone you know that isn't online.

You can also print up the information and bring it to your doctors and ask them to share it with any of their other cluster patients.

Thanks to everyone for your loyalty, the help you have been to others in this group and the help you have all been to Clusterbusters. We have come a long way and have a lot of great adventures ahead.

Everyone that has helped keep this board active and helpful to others has made a difference in others lives. I can attest to the fact that besides the people you see helped here, there are a LOT of "lurkers" that are also helped every day here.

Clusterbusters

P.O. Box 574

Lombard, Il

60148

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Hello all,

I was diagnosed with Sunct in 2012.  In 2013, a diagnosis of Local/Focal seizure syndrome was added.  In February, I filed for SSDI.  The caseworker had a difficult time finding Sunct in her system and ran my SSDI on epilepsy and Sleep apnea.  I, of course, was denied because my 13 pages of medical evidence I brought with me to my appointment was directed at Sunct.  I have been unable to drive for a few months now.  The denial said, I was not severe enough to warrant disability.  Last Friday, I went in to the hospital to do a brain map in the hopes of showing where in my brain activity is ignited.  Good news! The seizures are aura related, along with the numbness in fingers and toes, facial paralysis, and confusion.  I never knew what an aura was until last Friday.  I was on 3000 mg of Keppra and the seizure specialist said I was suppose to lower the Keppra to 500 mg 2 times a day and get CBT therapy.  I looked at her with confusion.  I possess a BA in Psychology & a minor in Criminal Justice, as well as, an MBA.  She said with CBT the aura symptoms will be improved, but, you still can not drive.  Oh, you need to go see your neuro in two weeks and poof I am dismissed.  Mind you, I am still experiencing everything I have been for the past 3 years.  The Sunct is in remission THANK YOU JESUS! 

Question: Do you think I should hire an attorney to appeal the SSDI decision?  I get so confused, I am not sure if I can do this myself. I need help!

Thanks everyone! - Sheri :-[

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Thunder Horse, on 30 Mar 2015 - 10:41 AM, said:

how do you know if the completion of the questionnaire

was successful please?

should i have had an email to confirm at all?

thank you ,

-hoss

Sorry I'm just getting to this Hoss.

We do not have a confirming email on the registry. If it had not gone through you would have been notified.

 

If you'd like to PM me your name, I can check to make sure for you. You may have already received an email regarding ongoing studies by now.

 

Thank you very much for taking the time to register. The registry has been very helpful already in helping move research and clinical studies forward.

 

Bob

 

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Just registered, more than willing to get to the end of these Clusters, nothing but trouble, boss's do not get it when you have an attack, been fired one to many times, yeah, more than willing to assist in a study !

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Hello there ive just signed up to cluster busters as I've been suffering with them for a good 5 years now. It's good to see everyone getting together talking about it, something I've never done. I'm keen to find out about fungi and mushroom treatment and how to take them. I live in the UK. I really need to try this as I feel like I'm at a dead end and sumatritan are just making things worse . Any info help would be much appreciated. 

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Click on the blue ribbon at the top of the page that says NEW USERS - READ HERE FIRST and that will point you in the direction you want to go. Ask as many questions as you can think of and I am sure someone will have an answer for you. 

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