Think I've Finally Figured It Out...Maybe?

[Bonds 25]

After suffering for many years (~20) from occasional strange headaches that were:

1. VERY severe

2. Would not go away no matter how much Advil, Tylenol or other various migraine meds I would take

3. Would wake me up in the middle of the night in an instant

I think I finally figured out it might be cluster headaches. While I'm pretty much self diagnosed at this point, I did see my family doctor who prescribed me 

Topiramate 25 mg (twice daily) which I started taking last Friday and referred me to a Neurologist. Only issue is there is a HUGE lack of Neurologists in this area and my earliest appointment is mid January. 

I've been doing some research lately and find my symptoms conflict (at least my interpretations) with some cluster headache diagnosis, so this site seems like a great place to maybe get some opinions since my Doctor's knowledge is quite limited with this rare condition. 

Here are my experiences.

-My headaches always start between 1-2am like clockwork (unless its mild occasionally) and only when I'm sleeping  

-They vary in pain scale from 3-10 with 6 and above feeling like the left half of my face is being crushed in a vice. I cant imagine anything on earth being more painful than a 9+

-For hours at a time, sometimes for as long as 5 hours, the vice is quickly tightened for a couple minutes, then slowly loosened only to be tightened again minutes later. Sometimes a dull headache will linger for 10+ hours following.

-I find myself pacing in my master closet in between tightening and leaning against the wall in agony during while my wife and daughter sleep. Laying down is IMPOSSIBLE or even sitting up in bed or a chair.

-Even 40 mg of ambien on an empty stomach isn't enough to overcome the nightmare (9+)

-To make matters even worse, following severe episodes, its like I have experienced brain damaged that can last through the following evening. I am just not all there, like a zombie, however, I wake up the next day fine. 

-Its so severe I sometimes vomit

Since March I have kept a log.  Date, Pain Scale, Time, Vomit? 

3-17,  9/10, 1am-4am, Vomit

3-25, 10/10, 1:50am-3am, Vomit  

4-28, 4/10, 4am-7am, No Vomit

5-09, 3/10, 2am-5am, No Vomit

5-13, 6/10, 2am-6am, No Vomit

5-25, 10/10, 1:50am-6am, No Vomit

6-7, 3/10, 4am-11am, No Vomit

6-26, 3/10, 2am-9am, No Vomit

7-5, 8/10, 3am-8am (minor 3/10 lingered until 3pm) No Vomit

7-23, 5/10, 2am-7am, No Vomit

8-5, 10/10, 2am-7am, Vomit (possibly the worst night of my entire 41 years of existence) 

8-17, 7/10, 2am-6:30am, Vomit

Sorry for such a long 1st post, but I'm very interested in what you guys think. Am I correct, are they cluster headaches?

Thank you!!

 

[CHfather]

Bonds, it does sound a lot like CH.  Very sorry for all you're enduring. The only aspect I would say is not classic CH is the multi-hour attacks of fluctuating intensity -- but maybe some others experience that.  Not everyone with CH vomits, but many do.  Does your eye get red, teary, or droopy? Runny or congested nose?  Those are other standard symptoms.  

Do you have periods of time (weeks or months) when you have attacks, and then periods when you have no attacks?

It's possible that you have a CH "lookalike" condition such as hemicrania continua -- but the regular nighttime appearance of your attacks suggests CH to me.

If you have CH, topiramate is not the first best medication.  Are you able to go back to your doctor with more information and a request for different meds (verapamil, oxygen, and a nasal or injectable triptan would be the typical first-line pharma approaches).

In the meantime, some things to try: Quickly drinking a cold energy shot (such as 5-Hour Energy) at the first sign of an attack; standing with your feet in very hot water during an attack; drinking ice water through a straw onto the roof of your mouth at the beginning of an attack (trying to create "brain freeze"); inhaling cold air from an air conditioner.  None of these are perfect or completely reliable, but some sometimes help.  

Also, you could start the D3 regimen.  Read about it in the ClusterBuster Files section of this board and also here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

[Bonds 25]

Thank you for your reply. I usually end up keeping my left eye closed during my bouts. According to my log I started in March, I seem to have 2-3 episodes a month. Over the last couple years, although I never thought to keep track since I just thought they were "headaches", my occurrences are definitely increasing drastically no doubt. About 4 years ago I also started to randomly smell cigarette smoke when there is no smoke around. This sometimes will last for weeks at a time and can be to the point where its as strong as if somebody is actually blowing smoke directly into my face. It will then disappear just as quick and will be gone for weeks, sometimes months. This condition confused the hell out of my Doctor, but he did eliminate brain cancer via MRI. 

I have never been awake and began to get a headache, I have always been asleep.  

I can try with my Doctor, but I assume he will be hesitant and will suggest I stick with what I have until I see the Neurologist...and who knows how much actual knowledge he will have when it comes to cluster headaches.  

 

One thing is certain, these things SUCK and its impossible to try and explain just how much they SUCK to my friends, family and coworkers. 

[jon019]

Hi Bonds...I second CHf....good stuff. Especially agree regards Topomax...limited success (compared to other available) with nasty side effects.

Interesting re cigarette smoke....I used to smell ammonia....and I could tell how bad the cycle and the hits were gonna be depending on the strength of the smell. It was weird and my doc had no clue either..

If at all possible find a headache specialist....regular neuros don't necessarily have any more knowledge re CH than any other doc. And, any doc that discusses AND prescribes OXYGEN first....jump up and down and give 'em a hug. THAT'S where to start if ya got CH...…..

Best

Jon

[CHfather]

Hmmm, your overall headache pattern isn't CH-like -- two or three a month. Usually CH attacks are an every-day thing. For people with episodic CH, that usually happens over some time period, maybe 6-8 weeks, starting at regular times of the year, with one or more attacks pretty much every day.  This is a very big generalization, but they are called "cluster headaches" because for people who are episodic they "cluster" during certain time periods. And the cigarette smell isn't something I've ever heard of.  All that plus the duration of some of your attacks and the up-and-down nature of the pain during an attack make me wonder.  Any chance of getting to a headache clinic? I see there are some places that at least call themselves that in Spokane, and surely there are some in Seattle. 

[jon019]

Long slog from Pasco but may be worth it. I used to be a patient at the Swedish Pain and Headache Center in Seattle. BEST neuros I

ever had.....but both I know of are gone. The University of Washington has a clinic (first link below)...and a highly rated specialist Neuro at the Medical Center in the second link....

...both I suspect with LONG waits. For ANY neuro you call be sure to indicate "clusterheadache" and if you are currently in cycle....and be willing to fill in a cancelled appointment.  Some of them understand the urgency for treatment of this condition....and might be willing to work you in sooner....

Spokane closer ...I've never seen any reviews for the headache clinic there....

https://www.uwmedicine.org/locations/headache-uwmc/care-providers

https://www.yelp.com/biz/natalia-murinova-md-seattle-2

 

[MoxieGirl]

Hi Bonds,

Welcome to the forum, sorry you have to be here.

I get 1-3 clusters a month, but that is after taking home grown remedies for several years and beating the beast back from 2-5 a day. Mine are pretty random though when they occur. 

There is a good post here on tracking your attacks. I'm don't always agree with the descriptions used in the KIP scale, but it is a good guideline, and is what everyone uses to express the pain levels. It's explained in detail on that link. 

MG

[Bonds 25]

Is it possible the fluctuating intensity during my bouts are just individual cluster headaches? 

Thank you everybody

[CHfather]

1 hour ago, Bonds 25 said:

Is it possible the fluctuating intensity during my bouts are just individual cluster headaches?

While no one can say anything definitive given the many forms that CH takes, I haven't heard or read about long (up to five hours) attacks with that fluctuating quality.  But I haven't seen or read everything -- far from it.  In a sense, your best bet in my opinion (aside from a specialized headache clinic) is to get on CH meds, particularly oxygen, and see if they help. Another approach is to try indomethacin, a medication that usually doesn't help CH but does treat some other conditions like CH.  You could do both, oxygen and indomethacin.  Easy for me to say, but hard to do without a supportive doctor.  You don't know anyone who's an EMT or something who can make an oxygen tank and non-rebreather mask available to you? Or maybe you know someone who welds (or you could set up a welding-O2-based system, which would cost you about 100 dollars for a test).

[MoxieGirl]

MG's cluster headache rule: No two cluster heads are the same, and just as soon as you figure yours out, it changes.

My cluster attacks are almost always in waves. It's not a constant, steady pain, but a slightly varying one. 

Here is a description of 1 of my 2 worst ever cluster headaches.

I had not long climbed into a hot bubble bath when the cluster started. At first it was like someone tapping just above my eye with a nail and hammer. That quickly increased to an ice cold, burning razor cutting across my forehead. And, within minutes, this skyrocketed to the next sensation - a crow bar. I grew up on a farm in Iowa, and we had these really, really heavy steal crowbars that you could lift a tractor with. They were about 3 feet long, with a sharp wedge at both ends, like a large screw driver head. The sensation I felt for the next 45 - 60 minutes was like someone slamming this sharp end of the crowbar into my forehead above my left eye, and prying it back and forth until it was sunk into my skull. Then they'd pry my skull apart until my brains started to ooze out. Then, they'd remove the crowbar and the wound would heal back up, which was nearly as painful as it splitting apart. As soon as it was healed, the crow bar would slam into me again.

The pain was in waves. Sharp and hard, like being hit in the head with a heavy steal crowbar, followed by slightly less pain, but a ripping and tearing sensation. Followed by a burning as it felt like it was all coming back together again. And this just repeated and repeated and repeated until the water in the bath was cold. 

Pulsating is a good word to describe my clusters. 

MG

[Freud]

FYI your smells aren’t a sign you’re going crazy, my mother suffers from the exact same thing it is a real medical condition: phantomsmia or phantom smells. Hope this helps. https://www.your.md/condition/phantosmia/

[Siegfried]

I agree with all what has been said above. Diagnosis can be complicated and it can take a long time before getting there.

I have experienced it myself. As a lifelong "hardcore" migraine patient, I started to experience something that looks like cluster headaches 8 years ago during my migraine attacks. Around 1 hours of a sudden increase in very sharp excruciating pain around temple and eye together with autonomic symptoms and sudden restlessness. I found it all very weird as it was clearly very different from the usual migraine attacks. For a long time i thought it was caused by taking triptans but these bouts kept coming back in a vague "cluster like" fashion. 

I did not trust the entire thing and finally made an appointment in the headache department of the university hospital here. After talking for 2 hours with the doctor and answering all kind of questions, he diagnosed me with cluster on top of my migraine and prescribed me oxygen. And thanks the man ever did that because oxygen is saving my life currently !!

My GP doctor still doubting the diagnosis... for him it is migraine and he do not believe migraine attacks can generate cluster events. So you see even doctors sometimes don't agree with each other. In July this year I had my second appointment in the hospital. Now I did my homework ... detailed headache diary, detailed reports of a few of these headache with detailed description of every symptom that appears every 10 minutes (that was hard to do during such a painful attack !) and after going trough all these materials and discussing again with their colleagues, the CH diagnosis was again confirmed. When my GP saw the diagnosis confirmation, he says he is still not convinced. They also give me verapamil but after 5 weeks of taking this, with their proposed doses increases, it did not do anything so I stopped it. I ask my GP if I should go for a second opinion in another headache clinic but he told me it will not make much sens as they will probably confirm the same. And as long as the oxygen does its work, why bother ?

In the meantime I have done a lot of research myself. Maybe they were confused with migraine with cranial autonomic symptoms which can be very tricky to distinguish from CH. Maybe I need more accurate data for my diagnosis. Recently I was reading on clusterheadaches.com that in rare occasions "migraine and CH can blend together in one" referring to a few studies that indeed seem to confirm my case. I also have the impression that the last two years, the migraine (which I have already since age 8) is getting weaker and the CH character of my migraine attacks is becoming more and more pronounced. So it is constantly evolving.

I have been very bad since May but now it seems to have stopped since 3 weeks. I started to take the vitamin D regime since 1 August so maybe that contributes, or it is just the end of a cycle.

So as you see, it can take time and patience to come to a diagnosis and maybe it will never be entire clear especially if you are a borderline case. Best what I can advise you is to collect as much as possible accurate data. Write down everything what is happening, all the symptoms with their start and ending times etc... Also film yourself during an attack. Your behavior can give a lot of info to the doctor.

All the best !

siegfried