My story starts on 6/9...I get an awful headache and decide to go home for the day.  The next day I was scheduled for a facial and massage and I thought great-maybe it will make me feel better.  Well it didn't and I left feeling terrible.  My headache continues pretty much non-stop... I finally break down and go to the chiropractor across the street from where I work on 6/15 because I am also very tight in the muscles in my neck and shoulder.  I am told I am stage two degeneration in my neck and need to continue to come and also start rehab to try and make it better.  By 6/20 my headache has still not subsided and I have a horrible attack while out driving on my lunch break so I drive straight to the ER.  No tests ran was diagnosed with a tension headache and given some cocktail and sent home.  Alas the next day headache comes back.  I finally get in to see the PA.  6/22 start trigger point injections and go through 3 rounds in the course of the next week but it doesn't help.  The 800 mg Ibprofen and mobic don't help...the flexeril helps some with my muscles when going to bed...  Still having headaches and get a really bad one on the day of my MRI 7/21.  It came back this week and is negative.  While that is a relief I still want answers...  I saw a new PA yesterday and after reviewing my file and talking with me he thinks I have cluster headaches.  I was told to keep a log for a month and come back to see him.  In the meantime, I have a started a 7 day steroid today and will start Nortriptyline tonight and see if any of that helps.  I have had the pressure in my head and eye all morning and have had two episodes of intense pain that last maybe 5 minutes.  Eye feels enlarged and waters and nose drips.  The lady I work with drives me nuts.  She does not understand at all the hell I have been going through for almost 2 months.  I have had migraines in the past and also a history of headaches but not like this.  Nothing helps :'( Glad to have found this site if this is what it turns out to be.  Always good to have support from someone that understands...

Also sometimes when I get those attacks I feel like something is crawling inside my head and I feel like I am going crazy:/  Can anyone share with me how they felt when theirs first started out and if it sounds anything like what I am going through?  Was it always severe or gotten progressively worse since I am have noticed many say they have gone from episodic to chronic.

Hi and welcome Greeneyes87

Headaches, no matter what they are, aren't fun at all, especially when you've had headache problems for almost two months without any progress to a solution.

Diagnosing headaches is something that GPs, PAs and even many neurologists do not do well at, especially with complex headache types. This is why we always suggest that people see a headache specialist who has the appropriate skills and experience to make the right diagnosis. Once you've got that then it means you can get the appropriate treatment for your headaches.

What we can't do is to diagnose headaches here. Whilst we're expert patients, we are not medical doctors.

Have you looked at the CH quiz? (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) It can give a good indication as to if you may have CH. But it doesn't replace seeing a medical professional.

For your question around how CHs start, this can vary between people with it sometimes taking weeks or months or even years for the classical CH symptoms to be in place. Again this is why diagnosing headaches is complicated.

Hope you get your answers soon and do keep us updated.

What Mike NZ said. ^^^^

May I also suggest you take a good look at "Cluster Traits?" START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

"Medical Info" might be of help, also. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

That is a lot of information to absorb, but we have learned we have to be our own best advocates and often find our own best answers. I am hesitant to offer advice before you have a firm DX because there are other issues that can be much worse than CH, especially if treated wrongly. It is not that I don't want to help. I DO, but it must be done at the proper time with proper diagnosis. I'm hoping you get answers, soon.

All the best,
Jerry

Thanks for the responses...I started the meds on Friday...that was not a good day.  I was much better on Saturday which I typically am for whatever reason but neither night did I get really any sleep. Sunday I had some problems but wasn't too bad...I did sleep better but I chalk that up to the flexeril I took before bed because my back was killing me.  Yesterday however was not a good day.  Woke up with the dull pain and was feeling kinda lightheaded in the morning.  Around 1:30 I was starting to feel more pressure in my head.  By 2:30 my eye was burning and watering, my jaw hurt, my cheek felt numb, I was having a hot flash, and my head was throbbing. Was having shooting pains and burning in the back of my head as well.  I finally ended up taking out my contacts cuz my eye hurt so bad.  This lasted about 2 hours before I started to feel some relief.  Around 6 or so I started having sharp pains and ear pain with throbbing in my temple and my left eye even though I was in the dark seemed like I was seeing shadows and was very blurry.  Tuesday morning my neck felt really sore and I still had a dull ache in my temple.  I had a milder attack in morning with alot of the same symptoms but this time the pain shot down my neck.  By afternoon the pressure had intensified some and I had a stabbing feeling in my eyes and back of head.  My cheek  again went numb and my eye blurry.  I don't feel like the steroids or the nortriptyline are helping although I don't know how long it typically takes to notice a difference... just feeling frustrated:/  I didn't really sleep again last night and woke up again still with that dull headache.  Fought this morning just wishing it away and cringing when I would start to feel crappy... hit me around 11 this morning and lasted about an 1 1/2.  I am going in the see the dr tomorrow.  If anything I feel worse...and the not sleeping is not helping.  This is the last day of steroid.  See what he says tomorrow.  I have been writing everything down for him over the past week.

Which steroid did you take? What dose schedule?

Typically for CH people will take a prednisione taper dose starting at about 80mg a day for 3 days and then it tapers off over about 7-10 days. People normally get relief from CH in a day or two.

Similarly for Nortriptyline?

For CH prevention this can take a week or so to take effect once you're at an effective dose, which is why people do a prednisione taper dose to cover them for the first week.

Have you seen a headache specialist yet? A PA will not have the skills or experience to deal with complex headache types. As Callico said there are other conditions which give the same symptoms which can need urgent treatment and delaying is not a good idea.

I was on prednisone 4 mg dose pk for 6 days and Nortriptyline 10 mg.  I wasn't sure which one was causing the insomnia so I have been taken off of that and started Carbamazepine 200 mg yesterday.  I actually slept last night and today I have felt a little better.  I don't think that CH has been ruled out but he is just going through everything it could be and ruling it out.  He has now mentioned Trigeminal Nueralgia but I am confused because I don't have any of those triggers...  I did ask him about indomethacin since I had read several things it is used to treat but he did not see that as something that would help me at this point.  He is trying to get me in to see a nuero that specializes in headaches before he sees me again in a month.  He has also given me a script for Butal-acet-caff to try and combat any severe long lasting ones.  Guess we will see how this goes...

If it is CH, ... Check out Batch's D3 program. It's worked for so many of us.

And O2 (at least 15 lpm or higher) is a MUST to keep on hand.

I also have migraines and sometimes what I think is the start of a CH turns into a migraine.

Read everything that has worked for others and what hasn't. We mostly have to EDUCATE our doctors.
:-*

Greeneyes, everybody above who shared recommendations is info you really should comprehend. Also, this website has the most credible archives of info anywhere in the world regarding CH's.

Where do you reside?

Pain free wishes to you!
-Gregg

To be a true Clusterhead is to be one of the unluckiest fuckin folks on earth. To be a true Clusterhead AND to have found this site is to be one of the luckiest fuckers on earth. help is here if you listen...A true Clusterhead will walk thru fire for relief. Sorry that you are here....and yet search is over.

I live in Oklahoma.  I have started the D3 Regimen just have noticed a difference yet. The energy drinks don't seem to work to abort but maybe I am waiting too long. I do finally have some oral imitrex but that doesn't work either. Takes too long and also the burning in my head never goes away. Barbara that happened to me last week actually twice. I have had migraines before but it's rare. To have two in one week on top of the attacks sucked. I see the neurologist finally on the 19th so hoping I can get some better tools from him to prevent and abort.

greeneyes87 wrote on Sep 3^rd, 2017 at 7:16pm:

I have started the D3 Regimen just have noticed a difference yet. The energy drinks don't seem to work to abort but maybe I am waiting too long. I do finally have some oral imitrex but that doesn't work either. Takes too long and also the burning in my head never goes away.

The D3 can take effect for some people pretty quick, but others have gone over a month before seeing it kick in. Make sure you're following the latest updates - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

If you're using energy drinks, make sure they have both taurine and caffeine and that you take them as soon as  a CH is starting, not waiting until it is well developed and you should see them help more. But they only decrease the intensity / duration, so don't expect them to kill off a CH perfectly.

The oral imitrex tablets are ok for migraine where a 20 minute wait for them to be absorbed is acceptable, but they are too slow for CH. Instead talk to your doctor about using either the injections or the nasal spray versions which can work in about 5 minutes.

Also look at using oxygen which is also very effective - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Tremendous advice given to you by Mike NZ about D3, energy drinks, Imitrex, O2, everything he shared!

According to a poll, taken this week four years ago, among CH sufferers residing in Oklahoma - there were only three OK doctors familiar with treating CH's. For your reference, here are the three doctors names in OK that were recommended by CH sufferers on this website...

Tulsa -
1. Dr. Jay K. Johnson (918) 743-2882
2. Dr. Trudy Milner (918) 748-7890

Ponca City -
1. Dr. Shrikrishna Vaidya (580) 761-0266

If you are pleased with your neuro's CH treatment, please feel free to share name with us so your doctor can be added to the recommended doctor list to hopefully help others in Oklahoma.

Pain free wishes to you!  :)
-Gregg