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.

Lindsey,
Clusters are scary but they are also very manageable.  I'd suggest getting a definite diagnosis from your Neuro first of course. In the mean time there are a few things you can do OTC which may help. 

If you haven't yet, then I'd suggest reading about an anti-inflammatory supplement regimen under "123 Days Pain Free and I Think I Know Why" posted by Batch in the Medications, Treatments and Therapies heading.  Many are having good results with this.  Also to the menu bar on the left read about "water x 3."  That has worked wonders for some.  As you mentioned, some also have had great success with Melatonin so I'd definitely give that a try too!

Avoid any alcohol and smoking as these are major triggers.

Others with better experience and knowledge will come along in a short time and give more sage advice and wisdom.  I can also tell you that during my last cycle I read everything I could on this site and also made some new friends here; and those were a major comfort to me.
Please keep us posted! :)
-Gary

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.

Greetings, Lindsey. Please take the time to prepare for your neuro visit by reading as much here as you can, taking notes, and bringing those notes with you. Sadly, not all neuros are up to date on the effective interventions for CHs, and you are (or need to become) your own best advocate. There are three main interventions to explore: preventatives, intermediates, and abortives.  Preventatives come in various shapes and sizes but common are verapamil, lithium, topomax and various caffeine/ergotamine compounds. It is not unusual to find antiepiliptics in this category, as well as triptylines.  The most common intermediate Rx (to take up the slack until you build up effective blood serum levels of the preventative) is a prednisone taper, usually beginning at around 80mg/day and tapering down gradually from there. Abortives come in a wide range of effectiveness, but the most lovely and least intrusive is high flow O2. Please read the link at the left. Most who do not find O2 effective are either using too low a flow rate (we need 25lpm+) or wrong equipment (we need a nonrebreather mask) or wrong technique. Used correctly it is a godsend. Others are imitrex injections, migranal spray, zomig spray, and some have found help with the tablets although they are generally too slow.  Bunch of OTC stuff: D3/Fish Oil/Calcium citrate diet, melatonin, energy drinks for use with O2, etc.  Whew! Anyway, research and take this beast by the horns and interrupt the dance. Let us know how you make out. God bless! lance

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

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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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.
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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.)
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The PDF file, below, will intoduce the major therapies for Cluster--sort of stuff you will be hearing from the doc.

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Hi Lindsey,

I'm sorry I didn't see your post earlier, but here are some ideas for how to deal until your appointment, which will hopefully produce a prescription for O2, etc.:

1) Breathing freezing air at onset of an attack can abort the attack for some of us some of the time. Jumping in the car, putting your nose up the the blasting air conditioner vent, and deep breathing is a way to do this. You'd want to have your 'running to the car clothes' all laid out (or already on!) and whatever else prepared so you can get to the car ASAP. I have personally been wakened by a hit and gotten to the car in time to abort it.

2) Super vigorous exercise that gets you winded ASAP can also abort the attack for some of us some of the time.

3) Some people have reported success preventing wake up hits with the slow acting pill form of imitrex you have if they take it right before bed.

..Another thing that you should consider is ordering your high flow O2 regulator and non rebreather mask now (these typically aren't available locally), so when you get the prescription for O2, you'll be ready to use it.

Hello Lindsey

Hang in there , all the above is excellent advice, also energy drinks like red bull drunk quickly at the start of an attack can help reduce pain levels or even abort the attack , if you are lucky.

You have found the best place for advice and support , so read lots , ask questions as much as you like or even just come here for a rant if it helps.

Hope you find some relief soon .

God bless

Nigel

All - thank you for the replies. Unfortunately, I have been having an attack every night since last Monday. We went out of town for Mother's Day so I had more help with my little one than just her daddy so that was nice and I got to rest.

I definitely won't try any medical treatments without the go-ahead from my neuro other than the stuff I have on hand for my AS (Melatonin being one of them). I did take one twice this weekend and didn't find much relief. Last night I definitely had a bad attack, worse than the two previous nights.

I see my neuro on Wednesday and out of all the specialists I've had to mess with, he's definitely my favorite in terms of taking me seriously so I'm hoping if it is cluster headaches that we can start on some sort of treatment plan quickly!

I'll continue to look through the site for info and keep you all posted on what my Neuro says!

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.

Saw my neuro today. He has scheduled me for an MRI for next week and gave me a prescription for preventative meds to take in the meantime. Based on my medical history, he wants to do the MRI to rule out any type of aneurysm.

I cannot for the life of me remember what the name of the meds are right now because after the dreaded A word I lost focus and he submits them electronically to my pharmacy so I didn't actually get to see it. I'll be picking them up after dinner and hopefully will get some relief.

I did take an Imitrex (and you're right, I've just got the pills) last night before bed and though I did wake up with a headache, it didn't seem to last as long as the others (an hour and half to two hours was reduced to right under an hour).

Thanks again for the replies and support!

Keep us informed about the meds and scan outcomes.

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

Thanks Bob. Good to know. I was just so desperate and I'm literally scared to fall asleep at this point because I know they're coming.

The medicine he gave me is Indomethacin. Hopefully this will help. He said to call first thing in the morning to give him an update as to whether or not it changes anything tonight.

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.

Thanks HereTheyAreAgain. Having a good Neuro is so important. I am very blessed that mine was the first doctor to figure out I had an autoimmune disease after almost a year of strange symptoms and dismissals from other doctors. He did the autoimmune lab panel on my first visit and told me repeatedly I was not crazy! When I was having bad migraines as a result of the untreated AS, I could call him day or night if I needed help so I immediately turned to him last week after the second night of this and I realized it wasn't just some weird one time thing. I'm glad you have a good one as well! I'm struggling to find a good Rheumatologist at this point, and as I said before, it took awhile to get anyone to take me seriously when I started having symptoms of the autoimmune disease, so I know how frustrating that is!

Thankfully, the Indomethacin worked last night. I opted not take take it with food because I'd had a big dinner a couple of hours earlier and I won't make that mistake twice! I was incredibly nauseated. I had a tough time falling asleep but I'm not sure if it was the medicine or just that I'm so paranoid of sleep at this point because they start about an hour after I go to bed.

This is such a weird experience for me. I'm normally very mind over matter about pain due to my AS and the chronic back pain I get from time to time with it. I have a full time job and a toddler and can normally work through that pain or play with her etc even if it's really bad. These headaches however, are so debilitating both in a pain sense and mentally.

I'm very glad I found this site. At this point, because my AS makes me more likely to develop an aneurysm than average - I'm praying it's just cluster headaches. Ironically though, it doesn't take the nervous away because they are so damn painful! I think the worst part of all of this though is that I'm 26. I've been "sick" since I was 23 with the AS. I just want to not be sick for awhile!

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From the chart above developed by a task force from the European Federation of Neurological Societies, you may not have CH but rather one of its TAC relatives...  PH...  Most CH'ers get no relief from indomethacin.

Take care,

V/R, Batch

Welcome to Clusterville

  You've gotten some good advice .  .  . Expecially from Bob & Batch . . . you do need the proper tests (CT. MRI . . . which will come back "normal" if CH.

  You said you took one melatonin.  Usually they come in 3 mg tablets and effective dose for most is 9-12 mg about 45 min before bedtime.  If you do get a breakthrough ha, don't be alarmed/surprised if you wake up quite groggy . . . tis normal with Melatonin.

  If your neuro does diagnose CH . . . please ask for a script for 02 . . . is a miracle abortive for most of us . . . and DON'T accept an answer of "insurance won't pay for it".  If you get that response, tell him/her that you're willing to pay cash to try it.  The 02 is CHEAP, especially considering how well it works for most of us.  I pay $10 per "E" tank (the 3' tall green tanks you'll see at any medical facility), no deposit, no monthly fee, no limit on tanks . . I keep 20.
Call your local medical 02 suppliers and ask what their cash price is on 02.  Order a 15-25 lpm regulator off ebay (the 15 lpm reg can be had for under $30) & an Optimask (links on this site  . . $27.50) . . . a huge improvement over the non-rebreather (1 litre bag) mask you will find at the med supplier, which is what we used with success untill the Optimask .  .  . truly superior and worth the $)

  Fear . . . . that's something we all know way too much about.  When I came here, was having 6-8 attacks daily, sometimes 3-5 at night, most Kip 5-9, 20-45 min and the occasional 1-2hr+ horror.  We all have dealt with (How long before the next one? How long will it last? How bad will it be?)  and we know the fear of sleep . . . knowing he's waiting. For a year before I came here (a basket-case), I was afraid to take by grandson (then 5-6) to the woods or fishing or any activity without others present . . . the FEAR of having him be the only one around when I stroked out.   Until you find out what they are, you assume it's something that's going to kill you . . . .nothing can hurt that much and NOT kill you . . . it's difficult for those who haven't been there to associate that level of anxiety over a "headache"

  I use 02 to abort, "water X 3" (NOT easy to do ) and have been on a D3 regimen (and also fish) for at least the past year and am currently (mostly) pf.

  Make sure you keep a journal . . . noting time of attack, duration, pain level . .  what, if anything helped or seemed to trigger.  Use the Kip scale and take a copy of it and your journal on your next neuro viisit.

   Be Safe,   PFDANs

      Richard

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.

Quick update. Indomethacin definitely did not work. I found out because of my sinus surgery in March (not sure if I even mentioned that because I felt better so quickly I don't really think about it much at this point) - I cannot use any type of nose sprays right now because that's all still healing. So the Imitrex nasal spray is out for now.

So - Neuro called in Lithium and told me to try that and 9 mg of Melatonin. My MRI is Thursday and we're also doing an MR Angiography as well to rule out aneurysms. I've been having at least one headache per day since this all started, though the past few days they've started waking me up around 5 am as opposed to 1 am. Not sure why the change.

Hoping the Lithium works, or the MRI and MRA bring some answers!

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

Welcome to the board Lindsey. I use Lithium as my prevent, at 1200 mg a day it will block 60-70% of my attacks. The bad news is for most it takes 10-14 days before you will see any positive effects from it. I do a 2 week prednisone taper when I go on lithium. The pred gives me a break while the lithium builds up to a therapeudic level. Lithium works wonders for many on the board, sure hope it helps you. Welcome to the board.

Joe