Helpless Wife

I am the wife of a Cluster sufferer and feel so helpless when my husband has an attack. I cannot do anything to ease the pain or comfort him. I am struggling at the moment to see him go through an attack. The pain he experiences is absolutely mind blowing and brings him to his knees. He has just had an attack tonight and it's one of the worse he has experienced. He has been told to take Aspellgin when he feels an attack coming on but this time round he seems to be missing them or they're not working anymore. We have not tried alternative solutions as of yet but we are now willing to try whatever it takes to help him. My heart is slowly dying inside watching him in pain all the time and would love any suggestions to help him or any stories from other partners who feel the sane way as me.
Bilby79 Bilby79
31-35, M
5 Responses Jan 14, 2013

High flow oxygen is the best abortive and vitamin D3 as a preventive. Worth reading. All the best.
cluster headache advocate, 2013 Headache on the Hill, Washington DC

get to dr and get sumatriptan injection if uk or oxygen injection works fairly quickly dont feel so sad he is suffering and probably dont want you to fuss over him as i dont want my partner too fuss when i go through mine let him pace around rock whatever he does to try and ease them if he suffers long term as i do i am chronic you can be put on tablets called verapamil which stop long term bouts take care tell him i feel for him you would not wish these on anybody.

mrcluster, I have a feeling we have met before...
"oxygen injection" - this is why online users seeking advice should always seek GP or Specialist advice on any medical treatment found online. "oxygen injection" would be harmful if it could be done and there is no such treatment for cluster headache.
Avoiding harmful or uneducated advice on cluster headache is paramount for your safety. If you are gong to check out Verapamil, do this under specialists supervision only and make sure to get regular pathology and ECG testing done, if this drug is prescribed for use in CH.
There are many clinical study results on the use of verapamil in CH.
Please check them for safety before taking advice from online.

I urge you to consider rereading your note. Clearly mrcluster overlooked a simple punctuation mark, but the note is sincere. His first words are seek a "dr."

"oxygen. Injection....."

No need to be condescending. Remember, you are also acting as an internet adviser (regardless of whether or not you think your own advice is superior). Still just another one of us internet advisers :) Peace.

Thanks for the punctuation lesson. I suggest you re-read your note, the error you quote does not exist. Whether or not my advice may be considered "superior" by anyone is irrelevant. In my capacity as a CH forum moderator, I defer to the expertise of Scientists and Specialists. "Oxygen injection" may be interpreted as Air Embolism:
In any form "Oxygen injection" is not a recognised CH treatment.
As an "Internet adviser", I consult with my specialist, one of the world's leading Headache specialists before I post. As an experienced CHer of 34 years and veteran of 70 drug trials in CH, I feel at least qualified to comment on my condition. I recognise Mrcluster's sentences well, I suspect I have been dealing with him for some time. If MrCluster is who I think he is, you may regret his presence here and dangerous ill-informed input as we did for some time on our forum.
Taking pot-shots at punctuation without checking yourself and adding "Peace" on the end - now that's condescending...
Always seek specialist advice before taking any medical information from online sources.

My wife went through the same pain as you watching me suffer. I have chronic clusters. High dose verapamil works well, the side effects suck. Good luck to you. I hope things get better. My wife couldn't deal with my condition any more.

Hi Tsunami75. I too am a chronic cluster patient. I spent about 2 years on verapamil until the side effects became so overwhelming (low, low BP) I had to stop. I believe I was at 720 mg with an additional 120 slow release at bedtime.

About the same time as I was forced to come off of verapamil, I found some information online about cluster headache patients supplementing with high dosages of vitamin d3 on a "facebook group site" dedicated to cluster headache patients. Theirs over 2,000 members there to share information. I invite you to join us! In the mean time I'll copy and paste what's come to be called "The Vitamin D3 Regimen".

Also on (search for a thread titled, "123 days pain free and I think I know why") this thread has had nearly 80,000 hits!

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day) Vitamin D3 * - 10,000 IU/day Calcium ** - 500 mg/day (calcium citrate preferred) Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate) Vitamin K2 *** - 120 mcg/day Vitamin A **** - 900 mcg (3,000 IU) for men and - 700 mcg (2,333 IU) for women Zinc - 10 mg/day Boron - 1 mg/day

Stay strong.

ps.....see that profile photo of mine??? That's me along with 63 neurologists, patients and support persons petitioning congress last year at an event called "Headache on the Hill". Catchy, huh? lol. Anyway, our mission is to "ask" congress to hold "Congressional Hearings" dedicated to Primary Headaches in the US, the costs to the patients, their families and their employers, the lack of new treatments or funding for new treatments and the prevalence of all primary headache disorders. I'll be going back April 8-9, 2013!!!!!!

Support persons for the cluster headache patient are truly the bestest people in the entire world! As a CH patient, my husband shares how helpless and sad he feels watching. Gaining a support persons perspective was a unique experience! I signed up to go to a cluster headache specific conference (Clusterbusters nonprofit organization was the presenter). I'd met another patient inside an online forum who was also going to the conference. She ended up staying at my home as a guest for an extra 3 days! Alas, the sad part was that I witnessed (rather than experienced) another having an attack. OMG, that felt horrible!

From a patients perspective though, I can tell you this: if you & your hubby have chatted about his likes/dislikes during an attack AND you follow through with those things during his attacks, he is feeling loved, supported and knows it's the best you can do. Think of it as a "Do this/Not that" conversation. I'm really happy that you've taken the extra steps of posting on a forum for your own mental well-being. That's good stuff :)