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New to this site, Husband is a sufferer


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This is the hubby (Tom) PF today :) Yesterday started my season, caught with empty o2 tank and no meds. Learn from that mistake, keep well supplied. As always I'm a great optimist escape last year except for about a month. I surely know better. Never will be 100% without CH. So back on the Med regime and fill the O2 tank tomorrow.  My heart felt thanks goes out to everyone for your support for my family and myself. We know no one needs to go this course alone. God Bless and hope your days and nights are PF!! Never lose hope, for you are never alone in this, all of us will reach out to you and your family to help you through this.


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Lisa/Tom, some things to consider:

Try downing an energy drink or energy shot at the first sign of an attack (or a strong cup of coffee, although some people think the taurine in the energy drinks/shots is helpful). Basically, the more caffeine in the drink/shot, the better.  This can abort an attack, or reduce its severity.

While waiting for the meds would be an ideal time to try busting (taking psychedelics, often at subhallucinogenic levels -- it's what this site is primarily about, although we're happy to help with more conventional things).  It could also be a good time to give the licorice root protocol a try: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068      (You can read more about busting in the "ClusterBuster Files" section of this board.  Here's the first file: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865)

I guess we'd be curious to know what meds Tom is planning to go back on.

Has Tom tried the "vitamin D3" protocol that has helped a lot of people? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

He can almost certainly -- very certainly -- get faster aborts with an O2 system using the mask made for people with CH -- http://www.clusterheadaches.com/khxc -- and a higher-flow-rate regulator (25 lpm or more).  Read more about O2 at the CB Oxygen Page under the black and white MENU tab on the left side of this page.

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Lisa, Just let me say on behalf of every sufferer/survivor...thank you for being supportive and being here.

My ex wife would slam the door and say I cant deal with this.

My present wife is like you. Supportive. Kind and willing to learn/help/support/care.

It makes my heart smile when I read about every supporter out there...

I say this all the time.

My son has no choice. Im dad no matter what.

My wife has the choice to pack and leave, yet stays and helps.

I have immense respect for spouses who choose to stay.

thank you/

This is one of the best sites for info and the most caring.

From one Tom to another. Wish him pain free days

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Thank you so much, Yes CH Survivor I will always stay. I do get frustrated sometimes knowing that there really isn't anything I can do to help Tom, But i'm always there to make sure that he has everything he needs and to keep our daughter quiet :) We survive this every year. And it makes us stronger. Thank you all for your support :)

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Tom will go back on verapamil and all the beta blockers such as Periactin and Ranitidine he also has imitrex shots for back up. He tries really hard to stay away from the heavy pain killers they prescribe him. They don't really help him anyways.

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Lisa, I'm not a doctor, and we have a couple of actual physicians who visit this board, and I will defer to them here.  And if all this works for Tom, then who am I to say?  But a few observations: ranitidine (Zantac) is used mostly to treat GERD (it's an H2 blocker, not a beta blocker).  I have to say that I have never seen it prescribed for CH (which doesn't mean it never has been, or that it isn't effective).  Periactin isn't a beta blocker, either (I'm pretty sure).  It's confusing to me why it would help, although I've seen it listed as a kind of if-nothing-else-works treatment for CH.  Yes, the "heavy pain killers" generally do not help, and can make matters worse. It's hard for me to think of why a doctor familiar with CH would prescribe them.

Verapamil, yes, it's often used, and imitrex shots are very widely used.  Beta blockers, such as propranalol, are sometimes prescribed, but I have no idea of the wisdom of prescribing them in addition to verapamil, since they both affect blood pressure.

It just seems like a strange cocktail to me -- again, I'm no doctor, and I could be wildly wrong.  If you have any doubts about Tom's doctor, there is a list here -- https://clusterbusters.org/?page_id=455 -- of docs (in the US and Canada) recommended by folks with CH, in case you might want to look into one near you.

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I'm a doctor, and this is my professional opinion.

Ranitidine is a gastroprotective drug, often used to preserve the stomach from other drugs, such for example steroids (cortisone, prednisone, etc), and/or NSAID (antinflammatory). It's a quite safe drug to use, so there's nothing to be scared of, but still, by itself it does not help for CH, in any way.

Periactin = Cyproheptadine, it's a first-generation antihistamine, so I don't know why they prescribed it for CH. Maybe your husband suffers from seasonal allergies? Asthma? Dermatitis? Anyways, I think it's not good for your husband to take it, and I think your doctor should look back at his prescription, because of the subsequent negative drug interaction, wich I encourage you to copy paste it from here and submit to him.

Cyproheptadine has secondary antiserotoninergic effects, and while it is sometimes prescribed for children migraine as preventive, it may seriously reduce the effectiveness of the triptanes (in your case Imitrex). CH is no children migraine, and I've never heard any study describing Cyproheptadine as useful, so unless there's another non-described reason for its prescription, I strongly advice against the use of this drug for this condition, for the above reasons.

If your husband suffers from allergic rhinitis or other forms of hay fever, he could use more safe and newer drugs such as Cetirizine or Fexofenadine.

If you have any other doubts or questions, feel free to send me a pm, or keep posting in this topic, I'll try to look at it daily.

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No he doesn't suffer from hay fever or anything like that. Hes had CH for over 20 hrs. I will have a talk with his doctor and see what the hell is going on. Most neurologist here have no idea about CH's anyways besides what they can google. Thank you all for the advice.

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He's had CH for over 20 hrs. .... Most neurologist here have no idea about CH's anyways...

Well isn't that a common profile and common experience for CH'ers here!  :(

Linda and Tom, if you didn't see it on TV, I suggest you watch the internationally aired National Geographic segment about our buddy Dan (forum name: Hipshot) and his fairly typical, eye opening, jaw dropping even, experience with busting, an approach a lot of us have found to be a MUCH more effective preventive than any toxic pharmaceutical:


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Just a note that your doctor is not completely nuts: cyproheptadine has been prescribed for CH, and some people even found that it helped.  At one CB conference some years back, a doctor from the Diamond Clinic, which has quite a few CH patients, described it as an effective preventive, and the Robbins Clinic also lists it as something to try, as does the New York Times.  I am sure that Dr Ty is right in all that he says: that there are no formal studies; that it's another CH "hand-me-down" from migraine treatment; and (most importantly) that it might interfere with the triptans -- but it's not in itself a completely crazy thing to try.  Since Tom's had CH for 20 years, maybe he's been through a lot of possible treatments?  I hope maybe he'll consider what Jeebs says just above here, and also some of what I have suggested up above.

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He has been treated for everything. Especially since they had no idea what was the matter with him. I know that the O2 has worked wonders if we can always keep it filled. That is what i'm doing today, so I know that he has it when it strikes again.

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Lisa, might as well cover all the bases here -- What does he have for O2 tanks?  Most people like to have a couple of big tanks ("M" tanks) at home and a couple of smaller, more portable ones (E tanks) for the car/work, etc.

Idaho, eh?  Is that the same thing as Montana?   :-?  :o  We have a bunch of CH heroes in Montana.

He/you two should get to this year's CB conference if you can.  Nashville's a long trip for you -- but it's a great experience.

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. Hes had CH for over 20 hrs.

20 years, or 20 hours ???

Anyways there are quite a lot of other options to try still. Did your husband tried:

- Lithium salts

- Beta-blockers

- Topiramate

- Valproate

- Depot-form steroids?

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Hi Lisa....

A little late to the string of posts here, but just want to say that you are

WONDEFUL!!    [smiley=dankk2.gif]

My wife has supported me through 5 years of this crap, and I don't know

how I could have done it without her.  Having the reliable foundation of

a spouse is just as good of medicine as anything else (well, almost anything)


The frustration of not being able to help, watching a loved one go through the horrible agony CH provides and having to explain it to people that will NEVER understand .... can lead to a pretty frustrating experience.  Believe me, we don't want to have to share our pain.   

You have taken a huge step in the right direction and the people in this group will absolutely commit to answering your questions, give well-tested advice and listen to any rant you can come up with. 

I'll personally Thank You a million times for your husband, he's a luck guy.


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Lisa, your an angel and a saint, so I send you this

Irish blessing

May the road rise up to meet you.

May the wind always be at your back.

May the sun shine warm upon your face,

and rains fall soft upon your fields.

May your Tom be pain free and

May God hold you and your loved ones in

the palm of His hand


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