mit12

I have been looking for a place to donate my brain after I pass for the study of cluster headaches. I can not find any. Any help would be greatly appreciated.

aaw96 As a suffer of Clusters and Migraines I do not think that an injury can cause a person to become a Cluster suffer. I believe that both migraine and clusters are a function of messed up brain functions. This is why I have been trying to donate my brain to the study of Clusters when I pass. For a couple of years I have contacted numerous hospitals with absolutely zero results. I can tell you with 100% certainty that injury can set off a wild and out of control hits. good luck my friend.

I have found that anything that disrupts my normal everyday life is a trigger. Interrupted sleep patterns is a huge trigger for me. For me the more I can keep things in the same pattern the better I can manage my attacks.

I have been there, I had the talk with my wife. Thank god things changed. Today I am still suffering with migraines and Clusters but have gotten peace within my self, I no longer prey every night that I will die and end this! Its a tough life living with extreme pain and having no controll over it. I have learned to love the good days and plow through the bad days. I can say that life is better when you love life rather than hate life constantly praying for death. I know that this is more like rambling but I hope you can find some peace within. Hang in there.

I must say that I never get a Cluster without having a migraine first. The Nurtec helps with my migraines which cuts down the number of CH events.

The beast is a strange one. I am trying to loose weight because my back is so jacked up. I started Simiglutide to help this process. I found that if I have 1 beer it will trigger headaches now that I am on simiglutide so I stopped drinking. One would think that now that I have stopped drinking any alcohol my headaches would be better, that is not the case. Amazing how a trigger can set off hits but stopping that trigger does not reduce the events over an extended period of time.

I am glad that that helped. I surfer with sleep apnea also. Got my C pap machine years ago. It did not help my clusters at all.

That is awesome news!

Thanks guys, I know that as my doc says I have a rare condition. I was wondering if my Migraines were a misdiagnosis and that I might of had light clusters and heavy clusters. But it seams that it is actually migraines with cluster events as the doc has said.

In between your hits does your pain go away or do you still have pain? I have been diagnosed with both migraines and Clusters. I am curious because before my first hit my head hurts like a bad migraine and in between hits my head still hurts like I have a bad migraine.

BoscoPiko I can not take antihistamines they are a sure fire way to piss off the beast. As far as I know I am the only one that has this reaction to them. I might try Ginger. Is it in a pill form or powder?

BoscoPiko, Thank you for the quick response. Yes I am on the D3 program. I hope that this is a short lived change.

As most of you know I suffer from both migraines and Clusters. For the second time in my life things have changed. The first change was when both my migraines and Clusters changed from being behind the left eye to going to behind my right eye. Typically the pain feels like a rod is being pushed through my eye and it comes out behind my ear. For the last few days it has changed to being both eyes! Although the pain is slightly less in each eye it is in both which is not only very painful but scary. They are coming on like clusters meaning they get real bad for a short time and let up to like a migraine behind both eyes for a short time and another hit and so on for most of the day. My question is have any of you heard of this or have had this kind of thing? The beast is forever changing, the fight goes on! Thanks guys for listening, I am looking forward to your comments.

Has anyone ever heard of this before? It’s been 3 weeks and I am still having them almost every day. I am panicking because this is how the beast gets woke up!

Busting with both MM and seads got the clusters to stop. I started the D3 regimen and later added Nurtec every other day to Controll migraine’s and O2. As I have said before controlling my migraines is the key to stopping my clusters. My clusters hit after a string of migraines, never had a cluster without having migraines before.

Great video. I have lived with this for most of my life and some of the things doctors have said to me are truly pitiful. Having this curse makes you understand what the term “ practicing medicine” means. My family understands because they have seen it. When I found this site I was done with life, I went from praying for God to end my life to telling my wife that if busting did not work I was going to get the family together and explain to them that I can not live like this anymore I will be ending my life! It was a dark time. This site and the great people literally saved my life! I still have visits from the beast but because of this site and the people I have learned how to get relief without the constant use of triptans and going down the rabbit hole that they cause. Thanks guys!

Afrin is the only nasal spray that I have found that does not set off Clusters. I have never tried it as an abortive. I have not tried the one you guys are talking about but I will be ordering some soon.

Might be a weird question but I am having back issues and when the doctor asks what is your pain level? It hurts like hell but using a 1 to 10 scale with 10 being a cluster headache its like a 5! So I ask how do you give the doctor pain level for pain? My wife thinks that I am at a 9.

For me when I get migraines everyday sometime between 1 and 2 weeks I will get a hit with clusters. I have never had a cluster attack with out having migraines first. When I have clusters they are on top of my migraine so after the hit the migraine is still there between the hits. I know the end is coming when the cluster changes sides and is way more intense for usually one long hit that last any where from 1.5 hours to the longest being 3 hours. This ends both the migraines and the clusters for a while. It totally wipes me out mentally.

Sorry for the late response. This is the regulator I use. https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B0069817G8/ref=sr_1_51?gclid=CjwKCAiA_6yfBhBNEiwAkmXy58vLA8apcUX0kTfMIduqxtaXZOjCI_n9M-TEOdVCUz0sD7NuFp3sAhoC-dIQAvD_BwE&hvadid=580937023198&hvdev=t&hvlocphy=9030351&hvnetw=g&hvqmt=e&hvrand=12012740884106048413&hvtargid=kwd-38833742&hydadcr=982_1014986896&keywords=medical+oxygen+regulators&qid=1676443596&sr=8-51&ufe=app_do%3Aamzn1.fos.006c50ae-5d4c-4777-9bc0-4513d670b6bc The bottle time depends on how high flow you use and how long it takes to abort the hits. It has worked well for me.

Great plan, hope you have an awesome vacation!

Follow up. I have been on Nurtec going on 6 months 1 every other day as a preventative. Migraines are about 1/2 as before the Nurtec and only had 1 bout with Clusters. So far I am happy with the results.

You are correct, there is no cure! But you can get some life back with busting and other things people have suggested. I have been where you are and got some relief only to go back. It’s a life long fight and I am thankful for this group of people that have helped me cope with this life.

My go to is 3 to 4 Advil PM followed by a large cup of strong coffee, or an energy drink.

This would be so awesome for the people that suffer with this horrible condition. Magic Mushrooms give me the worst side effects, my body temperature spikes than drops and I get severe buzzing that is almost unbearable. This keeps me from taking them until I am desperate for relief. We have been given the “right to try” for people with a life ending illness, wouldn’t it be great if we could get the right to try for Clusters! I would do BOL-148 in a heartbeat if I could get it.