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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 Clusterbuster’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

I notice I'm still conditioned to cch, I reach for the red bull, rub between my eyes when I lay down and wait for my head to adjust to the pressure. prepare myself for 5 pm hit, and wait for how intense it will be, I'm still anxious at 5 pm cch the condition my condition is in 21 days for me with D3 and B1, cch is held at bay, it's still present but subdued by the D3 and B1 hope you have a pf day, peace

HI, I am new here and poking around, I hope it's ok to say something. I too have noticed if I am on my tablet I will experience a greater "hit" as well. Just so you know you aren't alone...and I see I am not either so it's helpful for me as well to read your experience. I have had mine for 4 years. When I first got them it was not a pattern right away but it did develop into one and I am nocturnal. Initially it was during the day for a minute. My thoughts go out to you for less pain !! Sontye

Hey Dm! I can think of two things that may help: Melatonin taken in the 20-25 mg range at bedtime helps many with CH and can help with insomnia. And Benadryl is part of the D3 Regimen and a good sleep aid as well. They might help. How long are you to stay at 60mg? It is normally used as a 'bridging' med to get you pain free while something like Verapamil builds up in your system. However if a prescription med is not helping I am not sure either would benefit you. Pred is very helpful for short bursts, but it can really bother some people. Let your neuro know how it affects you! ATB

Thank you for all of your input and advice, I will definitely try the oxygen tank, as it seems to be the most reliable relief. I also wanted to ask, how common or rare is it to get CH-like symptoms but not actually have CH?

Naturally, you should have an MRI. Everyone with CH-like symptoms gets, or should get, an MRI. If you're not going to have an MRI, then you might as well treat it as CH and see what happens. I didn't want to say this in response to your first post for fear of scaring you, but for many people with CH, the first attacks and cycles can be more mild than what they experience later. So you need to learn about managing it. Sumatriptan tablets almost never help CH, because the attacks ramp up too fast for the tablets to take effect. If your attacks are predictable, you could try taking a tablet or two a couple of hours before you expect it, but you really want to try the nasal spray. 80 mg/day of verapamil is a very, very low dose, also not likely to have much effect. Maybe your doctor is proceeding cautiously, and will steadily increase that dose. It also takes a while for verapamil to get into your system, which is why some doctors give a steroid (prednisone) taper to reduce the pain while the verap has a chance to take effect. For your next attacks, try some of the things I listed, probably starting with the energy shot.