Jump to content

Diagnosis today after 25 years of being told and being prescribed migraine meds...


CursedEyeball
 Share

Recommended Posts

Rocking back and forth right now, wishing I could just pull my eye ball out with pliers, and woke one of my kids up because the pain is so bad. 

But saw an actual headache specialist this morning after 2 decades of seeing gp's and neurologists. I've always been told it is migraine. My GP when she finally referred me to the headache clinic even apologized and said she "had migraine blinders on because" I am a woman and she doesn't see women with headaches that aren't migraine or stress. So headache specialist today (1st appointment) gave me the diagnosis "atypical cluster" and prescribed emgality (sp?)

I would be happy that this means I could be closer to some sort of solution or even reduction, and should be happy because I've never heard of clusterbusters before tonight and it's sort of a miracle to discover that  I am not so alone, but the pain is just so bad right now that nothing matters. Why? Why this? Why us? How can any thing hurt so much? How can I just pull my eye out? It's a f*cking nightmare that just never ends. I'm sorry... I should probably wait until I feel better to write an introduction post. But I feel lucky to have found you all and I also feel so angry. I feel so angry at myself for googling symptoms so often, thinking that cluster fit better than migraine, and then not advocating for myself better. Not searching more, not finding this website, etc. because, "what do I know, I'm not a Dr. and they keep telling me I'm wrong." Oh my God they pain is so so brutal.

 

  • Sad 3
Link to comment
Share on other sites

Hi Cursed and welcome! I'm delighted that you found us and very quickly too. Yes, the pain is brutal and you will now have much better methods to treat/deal with it. And you did find US ASAP!! :)

I had to take my husband with me on my second trip to the Neuro to get him off the 'Migraine Train'! Ease up on yourself Cursed! We, as women, have to fight much harder and longer for a correct diagnosis. I had been on carbamazepine for a decade then too and I had to fight for that! When I finally got a diagnosis from a doctor, I had had CH for about 30 years. When mine first started in the early 70's, I had every test done that they could think of because 'women don't get CH!' Funny that the meds I was given were common for CH and seizures back then. Well, yes, we do and the balance is shifting to almost 50/50 male to female now. But you still have to beat the doctors over the head at times. Glare......

Did he prescribe O2 at 15 to 25 lpm via a non-rebreather mask? That is your first line of defense against this beast we live with. And any headache specialist knows this! That comes before Emgality. Is he pushing you to just take the shot as your first line of defense with nothing else? Are you Chronic or Episodic? 

Why did he say 'atypical'???? What was his explanation?

Apparently he did not give you a script for Verapamil or Prednisone either? Are you in cycle now, or are your hits year round, as in Chronic CH? I know that you are getting hit, just not what form of CH you have currently. Normally, a headache specialist will prescribe both meds. The Pred is used to bridge you till the Verap kicks in. Normally a Pred taper is what will get you pain free for starters and then the Verap kicks in to provide long term relief. The other script given is for pure O2, from a tank, not a concentrator, with a regulator that goes up to at least 15lpm. That is the thing that will kill a hit for you in minutes if used correctly. 

Since apparently you were mainly offered a shot, we can help you a lot with the pain and hopefully get your doc up to speed as well. Emgality works for some, but not all. But to only offer a shot is a concern in my book. Meanwhile, you are still in misery with no relief. I am shocked. 

At the first sign of a hit coming, perhaps heralded by a 'shadow' or mild form of a hit, ingest some caffeine - Energy drink or shot, coffee, V8 Energy all can be a huge help. Inhaling cold air helps many. Personally, I used a scalding hot shallow bath to sit in with a hit and just kept adding more hot water. I would take a room temp wet cloth to put on my head/face until the hit reached the point of 'don't touch!' Then, I just rocked till it left. Some prefer cold to hot, so you will have to see what is best for you. Additionally some just put their feet into hot water. The theory is that is dilates the blood vessels relieving pressure in your head. Others take an ice cube and put it ion the roof of their mouth on the CH side of the soft palate. Once you get the O2, you won't need the bath routine. It appears that you may be Nocturnal due to the time of this post, so some suggestions there: Sleep in a recliner with your head above your heart. You will wake sooner, with less pain and have more time to get the caffeine down. etc. Another trick is to inhale cold air: Outside air, AC vent, freezer all seem to help some people. Then, there is the D3 Regimen. Plain old vitamins that can do amazing stuff for Chers. They lower the pain level and slow the ramp up - both are great advantages to have. And for many, the vitamins can stop the cycles completely for a lot of people too.

Learn you triggers! Alcohol is the main one that gets most of us. But there are many others that will bring on a hit, like MSG!

Take a moment and read the blue banner at the top of the page: New Users............ There is a lot of information there that you will find valuable.

Hugs and welcome to the group!!

  • Like 5
Link to comment
Share on other sites

Welcome to the community cursed . So glad you found us . But also sorry you had to . Spinny has given you a great intro to this forum as she always does . She is 1 great woman . lits alot to take in but you need everything you can get to beat the beast . The people on here are great they will give you great advice and support , and their is always some1 here willing to listen whenever you need to ket off a little 

  • Like 5
Link to comment
Share on other sites

2 hours ago, Shaun brearley said:

She is 1 great woman .

Yes, the usual amazing post from spiny.   Like her, I have to ask -- Only Emgality?  That would be very unsatisfactory.  The Emgality might work, but there are strategies to get you out of pain now.  And regarding that Emgality prescription, it is for 300mg?  That's what is needed for CH.  

Even with a migraine diagnosis, you should have been prescribed Verapamil and some kind of triptan (perhaps the injectable form, Imitrex, but maybe tablets or a nasal spray).  Did none of that help you?  

spiny has covered it all so well that there's not a lot to add, but this post might have something useful for you to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  • Like 6
Link to comment
Share on other sites

Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!!

...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive,  and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step....

best

jonathan

  • Like 6
Link to comment
Share on other sites

@spiny, Shaun, Dallas, CHFather, jon, et.al. Thank you for the lovely welcome and the great information.

I feel like I am at the very first day of something that has already lasted forever. I am a little desperate, a lot confused. Grateful. And scared.

I want to understand more about what made my new Dr., the headache specialist, call this atypical cluster. I have always described my headaches as lasting 30 to 54 hours. I think that is part of the reason a proper diagnosis has always been so elusive. I get that cluster headaches-- by definition-- do not last this long. The actual pain I feel (death-spike behind my eyeball), what happens in my face (droopy eyelid, nose running on the headache side, face flushing), what helps (sitting in the shower, oscillating the water from freezing to scalding, writhing, rocking, pushing ice against the roof of mouth), all of these things fit cluster perfectly. But this experience of what happens to me.... is this "atypical cluster" or do I still not know what is wrong with my brain that creates such an unbearable pain? Is this even the right diagnosis?

I experience the headaches as lasting 1 1/2 to 3 days. That's not cluster, or is it? So what I call the headache starts with a feeling of lead in my head, a heaviness, with a pressure behind the eye on the side the headache will eventually come. My eyelid starts drooping. I get so overwhelmed with fear and dread. The pain is like a 3 or 4. I feel exhausted-- but is the exhaustion just dread sapping my will, or is it that everything in me just starts shutting down preparing for the ice pick?

Then the ice pick. The first one is maybe 3 to 6 hours after the heaviness and the level 3 or 4 pressure started. The ice pick phase lasts 45 minutes, maybe an hour or an hour and half at the longest. Pain level 9 or 10. Is this the cluster headache? If I am asleep it wakes me up. (It's way worse at night).

When the first ice pick is over, things go back to a 3 or 4. Sometimes a 5. Sometimes a 1. I am not crying anymore. I don't need to lie in a ball on the shower floor. I get an hour, or two, or sometimes even four  hours of level 3 or 4 pain, and always the pressure behind my eye, but I can handle that, I'll even fall asleep sometimes. Then, the next ice pick comes. It again lasts an hour or so. Unbearable. Then a return to the lead and the low-grade pressure, the level 1, 2, 3 or 4. I fall asleep with head wrapped in ice packs... until I wake up to another ice pick being pushed through the back of my eye-- level 9, level 10 and sometimes I throw up the pain is so bad. It's not that the headache makes me nauseous, it's that my body simply can't take the pain. The nightmarish ice pick in my brain, being shoved through the back of my eyeball. The pain is unlike anything else... I writhe, clutch my head, cry but try to not scream (I am so worried about scaring my kids-- but I can't always control things) Then it ends, I don't even really understand when it's over. I just am suddenly aware that it hurts, but that it doesn't HURT. Things are like a 5 again, I've fallen asleep, or I've stopped rolling around on the shower floor, and now maybe it's back to a 3... sometimes even a 1....

...at a 1 or 2, it's like the death-spike-level-9 had etched a carving where it had been inside my brain, and I can only feel the etching, and this etching doesn't exactly hurt, but doesn't not-hurt either. But it never totally goes away. There is always the lead, the pressure behind my eye, even if it's a 1. The crushing ice pick comes and goes, maybe three of them, maybe four or five, little hour long terror pockets of excruciating pain sandwiched in the two days of non-stop heaviness and etchings. And then, 2ish days later, the whole lead lifts. There is no more heaviness. No more pressure. And I know I am free until the lead and the pressure comes back.

In my mind, the whole thing is the headache. From the minute the pressure comes, to the minute it ends. That's never less than a day, never more than 2 1/2 or 3 days. But it is so confusing. The death-spike that shows up like a demented jack-in-the-box, that death-spike that lasts 45 minutes or an hour, hour and a half, or whatever before it rolls out like a receding tsunami leaving the etching behind-- this is just a part of the whole hell. To be sure, it is the part of the hell that is unbearable. But it only comes within, as pockets, of the days-long ocean of heaviness, of persistent 3 and 4 level pain that itself is wrapped between pockets of level 1 and level 5 pain.

Am I in the right place? Does it make sense that what I call the "headache" lasts days, with the lead, and the pressure, and the etchings is cluster? Is this what makes it atypical? Or do cluster headaches literally exist on their own? Independent? Not wrapped in a days long ordeal? I do not understand. 

When the headaches are bad-- or what I call the headaches (ie. I call the  whole 1 1/2 to 3 day long ordeals "the headache")-- they come fast and furious, two or 3 in a week, non-stop for months to years. I try everything. Wim Hof breathing, new vitamins, I even have tried "out-there" things like experimenting on myself with a Transcranial direct current stimulation (tDCS) machine, but at the same time, I am also so afraid to try anything. One of the worst headaches of my life was when I tried Imitrex. Beta-blockers did nothing. Opiates give me a rebound headache with more death-spikes that feel even worse (as if that's possible.) And then, sometimes, the universe seems to grant me a short pardon from this pain-prison. I get two months, two and a half months, with no headaches. I'll feel empowered, I'll think I can start making plans again, not being afraid to travel, or make commitments, but (so far) it's always been just a cruel joke. The headaches always come back. WTF. Why do they have to come back? I am so sad, there just aren't words for it... I just got to go a few months (September / October) with no headaches and it was glorious, it was truly so beautiful to not be so afraid every morning. But now they are back and there just aren't words for the pain, for the fear and this ruthless pain.

I am absolutely obsessives about triggers. I haven't had alcohol in 15 years, convinced there was a correlation between the headaches and even half a glass of wine. I methodically eliminated suspected foods, suspected poor sleep patterns. I eat maybe 20 foods now. I don't go to restaurants, I feel crazy about asking about ingredients in recipes when I go to people's houses. I don't even know if all of the foods I've eliminated are actual triggers or not. But the fear of getting another headache has made me suspicious of everything. I micro-manage every aspect of my life. My life feels like a shadow of a life because I have built in so many rigid rules to try to (so unsuccessfully) navigate around the mystery of when the headaches come and when they go. My beliefs about triggers feel as scientifically rigorous as an adherence to a cargo-cult. But I persist, because if even one headache is avoided, it feels like a belief system worth having.

About prescriptions, the headache Dr. said she would work on getting me an rx for medical oxygen. She said this could take weeks to get insurance to cover, and that I needed to be patient. She did not bring up Verapamil or Prednisone. I have never discussed either of these with any dr. I've seen. The plan was I take 3 Emgality shots each month from now until Feb and get the Oxygen, and then have a follow-up appt in Feb to see how that combo is working. She also said I could come in to the clinic for a nerve block if I decided to try that.

Thanks for listening, oh my gosh this got long,... and thanks for thoughts on if this does sound like "atypical cluster" or if I need to keep searching for a diagnosis, with my thought (perhaps delusional) that a correct diagnosis can act like a magical key, unlocking some set of solutions or some set of partial reprieves that can make this bearable or (one can dream) better. Thank you for your kindness. 

Link to comment
Share on other sites

On 11/14/2021 at 4:48 PM, CursedEyeball said:

The death-spike that shows up like a demented jack-in-the-box

OW. Kudos though for finding such an evocative description.

Meantime, just consider me one more from the legions of @spiny worshippers :D, and I'll say your description doesn't sound like typical cluster to me, though I'm nowhere even close to being a diagnostician.

So for all I know, "atypical cluster" might be accurate. One way I could try to categorize what you are describing would be cluster attacks with constant shadows in between. CH'ers are known to deploy ginger for quelling shadows (lower level, lasting cluster symptoms) BTW.

You've probably noticed that there are diagnoses out there like cluster migraine, or for constant CH-like pain, Hemicrania Continua?

From Googling:

Hemicrania continua is a chronic and persistent form of headache marked by continuous pain that varies in severity, always occurs on the same side of the face and head, and is superimposed with additional debilitating symptoms. on the continuous but fluctuating pain are occasional attacks of more severe pain

  • Like 3
Link to comment
Share on other sites

It sounds, to me, like you have bad heavy shadows lasting 2-3 days with your clusters in between. As in you get a shadow and tells you an ice pick is coming. Then you get the cluster and it resolves, but not completely and you still have a heavy shadow. Caffeine and ginger (tea, pill, candy) are very good for shadows. O2 will also help.

The 'ice pick' part you describe is the Cluster and fits the time frame. The pains in between are shadows and other nasty shite from CH. Like getting a Cluster knot on the back of your head or neck that hurts like the devil and puts you on notice that a hit is coming.

I am shocked regarding the 'medical' treatment that you have received! Have you ever had an MRI? Anytime in the last 5 years have you had one? You need one! It rules out 'other' stuff and helps clarify your CH situation. CH will not show on an MRI. 

In my opinion and we all have one, your treatment is barbaric. 'We can get O2, but it will take a while. How about some shots in the mean time? And I will see you back in three months. :angry: 

I hope that you have a PCP that you trust and who will work with you. He/she can get you a MRI and give you a Pred taper for a week. Just to see if it kills the hits for a few days! They can also start you on Verapamil, but will most likely go with a low dose. You want short acting, not ER when you do get the Verap!! 

I'm going to skip down and read Jeebs post and go from there Cursed. You have truly been put through a ringer and not offered a stinking thing. Your rant is fine and don't apologize for expressing your pain or frustration. We do know it!!

  • Like 4
Link to comment
Share on other sites

I understand the Hemicrania suggestion. Jeebs is correct, it is most definitely something to consider. And the question of 'is this it?' can be answered quickly with a trial of Indomethacin, but not by a doctor that treats their CH patients like you have been treated. Again, ask your PCP for help!! She seems a lot more caring than this headache specialist neuro jerk. 

On the other hand, the spikes you describe are not migraine like and that is how they are most often described for H.C. 

Please try some of the easy pieces suggested above and let us know how it goes? 

Your description reminds me so much of how I feel about my hits. The pressure behind your eye, I too get, along with my eyelid feeling swollen before I get a hit. It can be hours before too. It is not incapacitating, but dang annoying and predictive. 

1 hour ago, CursedEyeball said:

a receding tsunami leaving the etching behind

The major pain is gone, but the raw etched out feeling remains. 

Link to comment
Share on other sites

2 hours ago, CursedEyeball said:

I feel like I am at the very first day of something that has already lasted forever.

...been doing this dance for decades and have never seen a more apt description...wow...exactly! are you a writer...your phrasing in your posts is amazing.

2 hours ago, CursedEyeball said:

is this "atypical cluster" or do I still not know what is wrong with my brain that creates such an unbearable pain? Is this even the right diagnosis?

....it sounds like cluster within something else. aint no rule says you can only have one HA type. i'd say find a specialist....but i think you need a DIFFERENT  one...sheesh..

2 hours ago, CursedEyeball said:

One of the worst headaches of my life was when I tried Imitrex. Beta-blockers did nothing. Opiates give me a rebound headache with more death-spikes that feel even worse (as if that's possible.) 

...i didn't drink alcohol for YEARS, even out of cycle, because one of the few actual 10's i've had was a post drink hit from the depths of hell...scarred me. that said, Imitrex can be near miraculous and i would actually try again. as with O2, must be used at first hint of a hit otherwise likely to be ineffective. it making a hit worse is a  highly unusual cruelty beyond comprehension. i'd hope a coincidence, but understand any reluctance..

....beta blockers useless for CH...just one more migraine med thrown at us. opiates equally useless with the potential for introducing other problems..

...as has been said, it is beyond comprehension why a prednisone or methylprednisolone iv/taper has not been tried to give you a break while ramping up  verapamil (calcium channel blocker much more successful than beta blocks)  verap is sometimes needed at very high doses that PCP's are reluctant to prescribe (i used IR 480 mg/dy in low cycle, 980+ in high)...

...there are clusterheads who have found relief with ketamine. i know nothing about, but is worth looking into, especially with an experienced HA specialist...

....start the whole D3 regimen yesterday...ya got nothin to lose....

...i would insist on a indomethacin trial to rule out HC, like Jeebs and spiny said...

...you are on a busting website, might be time...there are non-psychoactive options if that's a concern...

2 hours ago, CursedEyeball said:

I am absolutely obsessives about triggers. I haven't had alcohol in 15 years, convinced there was a correlation between the headaches and even half a glass of wine. I methodically eliminated suspected foods, suspected poor sleep patterns. I eat maybe 20 foods now. I don't go to restaurants, I feel crazy about asking about ingredients in recipes when I go to people's houses. I don't even know if all of the foods I've eliminated are actual triggers or not. But the fear of getting another headache has made me suspicious of everything. I micro-manage every aspect of my life. My life feels like a shadow of a life because I have built in so many rigid rules to try to (so unsuccessfully) navigate around the mystery of when the headaches come and when they go. My beliefs about triggers feel as scientifically rigorous as an adherence to a cargo-cult. But I persist, because if even one headache is avoided, it feels like a belief system worth having.

...in the place you are at i would be exactly the same, so this total spit balling. some folks believe a trigger must be an immediate effect...while some indeed are, i do NOT believe all are. delayed reaction entirely possible.. probably old news to you, but for suspected (not the knowns like alcohol and msg) i used to do elimination/re-intro diets where i would totally eliminate a type/class then slowly re-introduce....carefully noting hits before/during/after. the only one i found for sure was aspartame, most of the migraine no-nos made no difference (e.g. nitrates, tyramines in cheese and fermented foods, glutamic acid containing like tomatoes and mushrooms ),  sorry, this sounds lame but it's all i got for now....

2 hours ago, CursedEyeball said:

About prescriptions, the headache Dr. said she would work on getting me an rx for medical oxygen. She said this could take weeks to get insurance to cover, and that I needed to be patient. She did not bring up Verapamil or Prednisone. I have never discussed either of these with any dr. I've seen. The plan was I take 3 Emgality shots each month from now until Feb and get the Oxygen, and then have a follow-up appt in Feb to see how that combo is working. She also said I could come in to the clinic for a nerve block if I decided to try that.

.....asking a clusterhead to "be patient" is medical malpractice. get the damn script, go talk to the O2 shop, offer to pay out of pocket if necessary, or take up welding tomorrow. you need to find out NOW if O2 works for you. read the files on proper use...very important. this could be life changing all on its own...

....no reason not to try the Emgality. no reason to delay a nerve block...do it! it will either work or it won't, there are minimal (if any) negative consequences...

2 hours ago, CursedEyeball said:

Thanks for listening, oh my gosh this got long,... and thanks for thoughts on if this does sound like "atypical cluster" or if I need to keep searching for a diagnosis, with my thought (perhaps delusional) that a correct diagnosis can act like a magical key, unlocking some set of solutions or some set of partial reprieves that can make this bearable or (one can dream) better. Thank you for your kindness. 

....absolutely keep searching for a diagnosis....undiagnosed ailments get treated with the whatever is handy. HA can be hard to diagnose, avg clusterhead mis/undiagnosed for 3-5 yrs....proper treatment, in the end, relies on diagnosis and the right practitioner...

Edited by jon019
  • Like 2
Link to comment
Share on other sites

Agree with all the comments above.  The fact that you had such a severe bad reaction to Imitrex might support a hemicrania diagnosis, since hemicranias are generally not responsive to triptans.  (They are also not generally responsive to oxygen, but you still should push as hard as you can for O2 -- as Jon' said, if necessary, get the prescription and self-pay, or go to welding O2 (we can tell you more about that)). This distinction doesn't make any real difference, but since you get periods of relief, it might be paroxysmal hemicrania rather than hemicrania continua.  https://www.ninds.nih.gov/Disorders/All-Disorders/Paroxysmal-Hemicrania-Information-Page   There are some parts of what you describe that aren't really consistent with typical hemicrania (length of the severe attacks), but as has been said, a fair test of Indomethacin will help you rule that diagnosis out or in (as will a test with oxygen).  A test of Indomethacin usually starts at 25mg three times a day. This is a relatively low dose, but you have to see if your system will tolerate it.  Can go as high as 75mg three times a day before you really know if it's going to help.

Prednisone also typically helps in the short term with hemicranias, as it does with cluster headaches.  

  • Like 2
Link to comment
Share on other sites

I'm no doctor but I'd say it's CH you seem to be having shadows between attacks as a lot of us do which are not as painful but are just as debilitating.  . Triptans don't work for every1 with CH . Ginger can really help with the shadows . If you have to wait for your 02 can you buy it instead to give it a go . . Can you get a second opinion on your diagnoses.  . I understand you think your life is messed up but once you have a proper diagnosis.  You can get the tools to fight this . Yes we all have bad days buddy I promise but we learn to live with it and we know it's not going to kill us . Plus the pain free days are so good we learn to appreciate life so much more . Hang in there my friend 

  • Like 2
Link to comment
Share on other sites

I am glad you found this site, there are great people on here that will help you out a ton. Your headaches sound a lot like mine. I have clusters and migraines which I have been told is rare, lucky me! I can not take imitrex as it makes my headaches worse, but I can take Zomig and it works wonders. Be careful there is a rabbit hole that comes with triptans that can send you into rebound headaches that will not go away unless you stop taking them and suffer through a few days. Prednisone is a life saver but you have to be careful with how long you are on it as it is bad for bones and liniments. O2 is great also if you cant get a prescription and a high flow O2 regulator rent a oxygen bottle from a welding supply and get a welding regulator. 

  • Like 5
Link to comment
Share on other sites

....good stuff from mit....i got hung up on the Imitrex and forgot the Zomig (5 mg NS)....which became my abort of last resort. i know it works differently, at least less dramatically, because i got NONE of the severe Imi side effects noted by so many, and it lasted longer (18 hrs). with these long term HA's, even an oral might be worth a try....

  • Like 3
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...