Hi all,

A little bit of back story - I started having a lot of weird symptoms shortly after the birth of my daughter (first and only child) with the primary issue being severe migraines. I was referred to a Neurologist and my MRI came back with an area of damaged Myelin however not significant. I was put on Imitrex and thankfully, he was intelligent enough to run blood work based on my symptoms which came back with an ANA positive. I was then sent on my way to a Rheumatologist who played with a diagnosis of Lupus for about a year and ultimately I've been diagnosed with Ankylosing Spondylitis. I'm on Sulfasalizine, 500 mg 3 times a day. Once we got those flare ups under control - the migraines stopped as well.

I've been able to manage the AS and have done well for about a year.

Monday night I woke up at about 1:50 am thinking that I had been shot. The pain was excruciating behind my left eye. I sat up, realized there wasn't any blood and thought it was a migraine coming on (which isn't typical of my migraines. I normally have some warning symptoms and they occur in late afternoon or evening). I got up and took an Imitrex anyway and I somehow managed to fall back asleep.

Last night, I again woke up at 2:00 am with worse pain than the night before. I immediately starting pacing the house, digging through the medicine cabinet for my Imitrex, Aleve, and eventually Lortab. Nothing helped. I curled up in a ball on the floor, rocking, praying to God to take the pain away. I beat my head with my fist. I got ice. I was desperate. I finally fell asleep about an hour and a half later from sheer exhaustion, still in pain. In the floor. It felt like my eye was coming out of it's socket. I could feel the blood pulsating through my head. Awful, awful, awful. At one point, I tried to call out for my husband to call 911 but couldn't get the words out. At that point I was so disoriented I couldn't even make my way back to our room for help.

When I woke up this morning, it all felt like a dream except for the dull ache still behind my eye.

I called my Neuro first thing and based on my symptoms - he feels that I'm now experiencing cluster headaches. Just from two episodes I'm almost terrified to go to sleep tonight. I have an appointment with him next week. Just looking for support I suppose. I have never had pain this bad and my AS is a painful condition and I typically have a high threshold for pain.

Is there anything OTC that works before I go see my Neuro? I have a muscle relaxer, Tizanidine, that I have from my Rheumatologist that is a take as needed kind of thing. The Neuro today suggested taking it at bed time as it can sometimes work as a preventative measure. I've also read that Melatonin can help.

Thanks for replying. I haven't had much time to dig through the site yet (toddler keeps me busy! but I am tonight and will continue tomorrow. I'm interested in the water x 3 post. I've been craving and drinking a lot of water today and was wondering if it was connected somehow! I will definitely keep you posted on the outcome of the visit. My neuro is out of town for a medical conference, he said otherwise he would have seen me this week. He advised if it gets unbearable to go ahead and go to the ER. Really hoping that the Tizandine works. I rarely have needed to take it but definitely sleep better if I do.

Please, don't get into any self-directed treatments until you and the doc have come to terms with a firm diagnosis and have even started to discuss treatment options.

Cluster is complex enough to manage without this added misdirection. Second, the early stages of Cluster are frequently defined by changes in symptoms and it may take some months before you and the doc can work thru to a stable treatment plan.

Start with some basic learning about Cluster for it will give you some tools for your discussions with the doc.
--



Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
---
Also, explore the buttons, left, starting with the OUCH site and these two sites:


A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
======

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
-----
Reading the messages here may not always be easy until you have some basic info but you will share the experience of several thousand other members.
====
====
Re. AS: so we share something else (sigh). There is a good support group in California which you might like to explore. (Get back to me if you can't find on the web.)
====
The PDF file, below, will intoduce the major therapies for Cluster--sort of stuff you will be hearing from the doc.

I see you have been prescribed Imitrex, but it seems the pill kind, which is not a good abortive med for clusters like the nasal spray or injections are.  However, for now, until you can see your doctor, perhaps if you were to take one before falling asleep it may help a some.  It may be worth a try, I noticed your neuro is out of town now, but not the pain.

Keep us informed about the meds and scan outcomes.

Re. Imitrex: save them for an attack; they don't work as a preventive.

Hi! I'm fairly new to posting but I have been visiting the site for years whenever I'm in full blown cluster mode.  I have learned a lot from this site!  I have found that Frova works well as a before bed preventative.  The problem with that is that you can only get nine a month with insurance.  And, I always wonder how much is too much.  Sometimes I cut them in half.  If you are truly having clusters, you will start to figure out how it all works for you.  You need to watch out for rebound headaches with too much medicine too.  I LOVE my O2 with my non-rebreather mask!  I used to think O2 didn't work until I started using the non-rebreather mask and turning it up to 12 lpm.  Imitrex and Zomig nasal sprays work well as an abortive for me.  My neuro is wonderful and listens to me.  I've seen many over the last several years.  They are typically hard to get in to be seen for several weeks which doesn't work with clusters.  He gets me in right away and gives me lots of samples to take home with me.  I started saving them in a shoe box for the next time.  I also keep a journal of each days headaches during my cycle and it's always helpful to look back on the next time or even during to see if there is a certain food trigger or something else.  Good luck to you!  It sucks but it's so nice to have somewhere like this to know there are others out there who know how it feels.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Thanks Richard. I think I spoke to soon about the Indomethacin. I ended up getting a very bad headache yesterday at 4:00 PM, so bad that I had to call my mom to pick my kiddo up at daycare and take care of her until it subsided at 6:00. The headaches I've been having had been in the middle of the night, so it hadn't directly had an effect on her yet.

Then, last night like clock work - despite taking the Indomethacin at bedtime - I woke up with another one.

I called the Neuro this morning and he is calling in a nasal form of Imitrex and also addition Imitrex pills. He's going to try to get me into for the MRI sooner than next Thursday. He told me Wednesday he really wanted it by the end of this week but apparently the hospital isn't really on his schedule!

Will keep you all updated.

We hope so, too, Lindsey. These early stages of what amounts to hunt and peck in order to find the right key are so very frustrating. But, you will find a combo that works, of that I am certain. Do pursue the O2. It is your newest bestest friend. Blessings. lance