Which advice would you give to someone who has just been diagnosed with Cluster Headaches?

See some advice from people with experience in Cluster Headaches to people who have just been diagnosed with Cluster Headaches

Find a doctor that has experience with treating patients with this, there is hope you just have to do the homework. Have a good support group around that is willing to learn about this and walk side by side with you.

Posted Feb 21, 2017 by Lucas 1152

Search other fellow sufferers with experience

Posted Mar 3, 2017 by Yoda 4292

Simple - get onto the forums where you will find understanding of the condition and the best ways to cope with them.
What works for some doesn't work for others - however if you are a sufferer you will give almost anything a try.

Posted Mar 4, 2017 by Donna 1005

I found that joining a few online cluster pages and talking to fellow 'cluster heads' really helped. As it is so rare, it's unlikely that you will ever come across another sufferer in everyday life. It's great to share experiences another nd get another device on coping with life with cluster headaches.

Posted Apr 27, 2017 by Matthew Bcfc 1000

Always have oxygen tank and sumatriptan with you. Be strong.

Posted May 21, 2017 by Pepe922 2000

Press your go to referee you to have oxygen. And see a neuroligist

Posted Jun 3, 2017 by Maria 2001

To hang in there and find a support group

Posted Jun 4, 2017 by Tim 2150

Join a support group it's the only thing that will keep your sanity

Posted Jun 11, 2017 by Jeff D 2000

See your Doc and hopefully a treatment is out there that will work for you. Imitrex has worked for me so far and is literally, at this point, a lifesaver. However I have already been told by the local pharmacy that I will need some kind of mumbo jumbo from my Doc if i need anymore......my Rx is for #10......doesn't seem excessive does it?

Posted Sep 23, 2017 by stan 1000

I'm so sorry you have this dreaded condition which is like a curse. But there are many ways you can help yourself. You should be open to trying different medications to abort the pain, but if the side effects bother you, talk to your neurologist and try something else. You have to know your body well and to learn what works and what doesn't. Make sure you have a friend you can talk to because you will feel very unlucky and if you have someone who empathizes it makes a big difference.

Posted Oct 26, 2017 by Lee-Alison 2000

First, relax. Understand that from now on you can take care of it ... Now you know what causes this pain ... From now on you will control it ... not in you ... start looking for what causes it ... what is the trigger ... try Understand it .... repress does not help ... try to read about it there are loads of articles

Posted Feb 1, 2018 by Danny 3050

Stay calm and try the right emergency meds. Choose a prophylaxe.

Posted Oct 20, 2018 by Michael Trapp 1600

follow the advice from doctor
adapt your daily life to the new condition
inform your entourage
join a support group

Posted Nov 7, 2018 by Oliver 3000

My advice is to Join a online support group. Don't go on the internet and search too much..this can cause you stress . Read only advice from certified sites. Don t listen to all horror stories. Don't ever try anything other patients try at home for pain relief first contact your doctor!!

Posted Nov 7, 2018 by MC 2500

Don't panic. Stay calm and strong

Posted May 16, 2019 by vasilis 2500

It's okay to ask for oxygen! It's ok to just try it. Have a plan for transportation to oxygen the next time you get a cluster, have a doctor's note ready. If it doesn't work, don't give up!

Educating yourself is the best advice. You will have to be your own advocate with this condition - know how to treat it before it comes back!

I didn't know I was having cluster headaches. My parents didn't know the signs and I was treated like a dramatic teenage when I got them. Talk about your condition without fear or shame, someone may recognize the signs and get proper treatment sooner.

Posted May 20, 2019 by Kendra 4550

Find and join a support group, there are a few good ones on Facebook: The Cluster Headache Support Group, Friends of OUCH - Organisation for the Understanding of Cluster Headache. Find a headache specialist and discuss and try different treatment options. And keep trying them.

Posted Aug 22, 2019 by Judy 1600

Don't rush into the assumption that everything can be handled with a pill. Consider non medicinal ways to deal with the headaches.

Posted Apr 13, 2020 by Larry 5050

Cluster headaches are the worst pain you can experience and this is the opinion of every cluster head.
Its important to seek support, reach out to people, support groups on social media such as Facebook groups for support for Cluster headaches, family and friends. Its difficult for non cluster sufferers to understand, but your fellow cluster headache sufferers understand, we are your family too!

Posted Jul 27, 2020 by Stėph 3000

Its important to seek support, a decent neurologist and headache specialist. This will help speed up the process of treatments and preventatives that work for you.

And don't forget, you're never alone! We are like our own little cluster family! Reach out, we are always ready to support each other.

Posted Jul 27, 2020 by Stephanie 4650

Now that support groups are available online, I would suggest joining groups in talking to people with our inflection. I actually cried the first time I found a support group and knew they were others like me. As many times as I try to explain to people what I go through, I would usually get a response like… Oh I get headaches Tylenol usually helps. So unless someone is very close to me I don’t even talk about it. It’s our own personal Hell. But the problem is shared is a problem cut in half. And there in lies the value of a support group of people who understand.

Posted May 20, 2022 by [email protected] 2500

Translated from spanish Improve translation

I was very scared, seven years with that pain, that one I understood for a moment I was dying of pain and after a while had past, I was scared, but of this as I was told by my doctor I'm not going to die, so that what is left is to muster the courage , to tell the known about the remedy oxygen if ever gives us the crisis in the office. And have a lot a lot a value.

Posted May 9, 2017 by Nélida 1001

Translated from spanish Improve translation

I've got 12. Years. Of. Pain and. I recommend. No. Transnocharse. Sleep. The. Eight. Hours. No. Take. Coffee. Chocolate. Cheese foods that are high in histamine. To avoid it

Posted Sep 17, 2017 by alex 900