G'day Piggy, and welcome.  Certainly it sounds like Clusters and the treatments you've been offered so far are pretty normal and known to have quite reasonable effect,  but the really important thing you must do is seek a proper and genuine diagnosis from a headache specialist.

Few doctors are able to do it,  even neurologists aren't generally trained in this,  and the big thing is ruling out some other conditions with the same symptoms that can actually be more serious than just Cluster Headaches.

Once we know for sure it's just CH then there's your current treatment regime plus so much more you can do toward taming this beast and claiming your life back.

Discuss it with your physician and also consider starting a headache journal  -  time of each hit, duration, intensity, what you were doing at the time  -  because this will help the specialist a lot.

Please keep in touch because we're happy to help you every inch of the way.  All headaches are horrible and we care.

Best from down under,

Brian.

That's great,  LittlePiggy.  Rule out the bad stuff and from there it's onward and ever forward.

CH is no walk in the park but it's manageable,  and you're amongst friends who understand.

Hi Little Piggy, welcome to the group!

IT's great you have found ways to manage this. The Prednisone taper with Verapamil ramping up simultaneously is from what I have read the first line of combat lots of neurologists use. I glad it got your headaches under control.

We have a very similar story. I too had attacks 5 years ago but as I recall only when I drank for a period of about 2 months. I just stayed away for a while and one day I tried some beers and no problem. I had at the same time gotten glasses, and attributed the whole thing to eye strain! Anyway they just came back a few weeks ago hitting at all times regardless, searching the web myself I found these headaches matched CH almost exactly. The only difference was I had not had a cycle like this one before as most people have had many cycles by my age.

First off, everyone here has been urging me to see a neurologist as well, and I have also done a log, and am waiting to get in with one ASAP. In the meantime I have gotten some great advice here, and tools to combat this, they have helped me get through this cycle, thank goodness!

In my "Thank you CH.com" post on this board yesterday I told about my experience with the anti-inflammatory vitamin regimen. But you can read it and look at the poll of CS suffers which was conducted here and see what you think for yourself. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE If you were thinking of building up you D3 please ask the group if it might be best after you get back off your verapamil.

Maybe now you have it handled this time but next time I recommend Oxygen. I wish I had done it sooner but I was just learning and a tank of O2 in the house seemed like a drastic thing to do, it made me uncomfortable to think of breathing O2 in front of my wife and worry her. Silly. I got it and used a 30/30 room air hyperventilation method I learned about here which saves on O2 and I can attest it's the best way to abort. (cheapest, healthiest) I do use the sumatriptan pen if I get woke up with a severe night hit though!

Hopefully this is the last cycle you ever have. But by looking into D3 and O2 you might arm yourself better if there is a next time, and possibly (as evidence shows) if we can keep our D3 levels good we can possibly reduce or avoid the attacks in the future.

To me, 30 cents a day worth of vitamins... I call that cheap insurance!

Some of the people here could explain it better, but I think what's been illustrated is that lower 25(OH)D levels may have a casual link to CH manifesting for those who suffer from them - not that low D 'causes it'. And it could be other factors govern this besides diet. Have a look at the link I sent before there was a survey if you scroll down.

wrote on Jul 19^th, 2018 at 6:42pm:

...And what they are saying is: "it's your fault. so now deal with it."

You may like to look at the Cluster Headache Specific board and on page 4 up near the top there's a thread entiltled  "Dopiest Responses to CH."

It's 9 pages long and you may just find there are some people here who agree with your occasional feelings of anger and frustration.

I know I do.

Oh, there is no need to walk down to ER to get O2. If your doc gave you sumatriptan they will write you a script for O2, especially since it worked for you in ER, most headaches don't respond to O2 like CH. My insurance didn't cover but it's pretty cheep, under $50 for 4 tanks for a month, then 6bucks a tank. You take your script to a medical supply outlet, your doc will tell you where one is close. I'm glad I got mine. I feel like it's a healthy way to abort - who knows what that sumatriptan might play hell with. If you do it let me know and I'll share you an o2 breathing method that works like a charm and conserves the o2.

The one you can buy here is much more effective than anything you get in a hospital or pharmacy. Specifically designed for CH.

See the yellow tab “CH.com store” on the top left of this page.

Peter.

Peter is right. I got one and its great and I could not find anywhere for less money as good quality. The non rebreather the med supply place rented me was crap, although they did have one. The Custer O2 mask is great. The reservoir is nice and big to breath a full inhale. I don't use the actual mask because I do 30/30 room air which is described here. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Did you try “ clusterheadaches.com message board” ?

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Peter.

wrote on Jul 21^st, 2018 at 1:07pm:

I am having troubles viewing this forum today.. is it just me? I needed to google search for the topic to find it.. cause when going on clusterheadaches.com I can't see the forum anymore it's all blank.. also here backgrounds are blank..

No issues here at all.

turns out the forum is considered "insecure content" and was not loaded. Also there are several tracking scripts running.
These scripts here are running on this site and tracking every bit of its content and users:
staticxx from facebook
facebook
accounts from google
apis from google
ssl  gstatic from google
and even paypal

There are several reasons why I do NOT have a facebook or google account, but mostly because my privacy matters, especially when it comes to my health and personal live. I personally don't even use the google search engine for that matter (I use duckduckgo instead!). I am sorry to say this, but I won't be here any longer. Though it is already too late, google and facebook have already collected this information under my IP, which to be honest, pisses me off, but there you go.
I don't know who owns this site, but if you read this. There is something like doctor patient confidentiality, I think this is a great concept and it is there to protect a patient's privacy. I hate to see that this is destroyed by internet sites like this one here, that give commercial companies full access via tracking scripts to collect and process such private data.

The forum itself does not run with encryption (https) which is why it wasn't loaded on my browser.

As the owner of this site, you should consider the privacy of your users. You are dealing with very personal information and most of us would not want to have this information passed on to said companies or actually anybody out there when ssl encryption is disabled.

I did seem as though the roommates could possibly be right.

    Unfortunately, in today's world privacy is getting harder and harder to maintain, nothing is safe from prying eyes, not email or the multitude of other ways we can communicate. Staying completely off the Internet may help but one would have to become a hermit to avoid the proliferation of surveillance cameras that are getting to be almost everywhere people gather or drive. Even the privacy practices exercised by doctors, clinics, hospitals, etc can be and have been hacked.  The trade off is to lose all the positives that the net has to offer. Public forums such as this one offer an opportunity to share and learn from other's experiences to our collective benefit. I learned about the use of oxygen on this site, no doctor informed me about it's effectiveness...this one little bit of knowledge has made my life livable. I would have had to administer far to many injections to abort the many Ch's I sometimes get. If I carefully chose what I reveal in text, the prying eyes will only learn my habits (not that I like that either), a trade off I'm willing to accept to gain what sites like this have to offer.    Sean

Ah, well.  On the brighter side she now understands the need for a formal diagnosis,  she knows all about O2 and NRB masks,  she has all the details of the D3 regimen and will hopefully be far better able to manage this condition in the future.

We've done what we can and I wish her well.

Agreed!

I think Brian nailed it...and I hope LittlePiggy returns here even if just as a guest (I did for a while). One of the best parts of this forum is that the information is, for the most part, FREELY available...much of it REALLY hard to find elsewhere...…...

….not quite sure where the apparent anger comes from.....this is an OPEN PUBLIC forum and posts can be found with a simple google of the topic...there is nothing hidden about whether it is "secure" or not...however that loaded word is used. Ya gotta come in with your eyes wide open.The best I can do is surf in private mode, and use a VPN...a screen name and no address....and stay away from facebook and its clones...(THEM I don't trust")………..

...perhaps some naivete involved...tho it's probably been a few years since that was replaced by "curmudgeon"....but the history of this site bears some reflection (sorry for any assumptions/detail smudging). DJ...ONE guy...needed info on CH ...couldn't frigging find it because it was NOT available anywhere. Started this here little website...on HIS OWN TIME...and HIS OWN DIME....and welcomed us all onboard. Undoubted agony prevented, friendships made, sanity saved and the man LITERALLY SAVED LIVES!! I'll stick with him...……..

Best

Jon

Very well said Jon.

Peter.

No one here claims to be a doctor so what confidentiality are you worried about.  I, and every one here, still has full confidentiality with their doctor.

No one has ever passed my details on to any company.

I agree with jon019. I spent 5 years with my doctors faffing about and not helping me at all because they didn't know what to do.  So all that confidentiality didn't do me the least bit of good.  Only when I found this site did I start to get some answers and help - just as you have done.