Just got diagnosed

[Bilal]

Hi guys, I was diagnosed with Cluster Headaches about a week ago and have been on Verapamil and Sumatriptane ever since. I started having these headaches about a month ago and my diagnosis was only just confirmed last week. The headaches occurred once every 5 to 6 days at the start but ever since I started taking these pills, I've been having one every day. The pain is on the right side of my head, my right eye starts to tear up and becomes visibly red, and sometimes my right nostril get's runny too. I've heard people say that the pain is unbearable but the first headache I had would be an 8 (on a pain scale) and the subsequent ones ave gradually declined in intensity but they've also gotten longer. My last headache lasted two hours while the very first one I had lasted only 20 minutes. Right now the pain would be at a 5. I'm not sure if I have a high pain tolerance or I'm just one of the lucky ones (some luck huh). I would appreciate any advice I can get.

[Bilal]

I should also add that I'm 24 years old. Never had a drop of alcohol in my life. Never did any drugs, and only smoked once(as a toddler I stole one of my dad's cigs).

[CHfather]

Bilal, how much verapamil; what form of sumatriptan (pill, inhaler, injector)?  Oxygen is the best way to abort attacks.  It is the #1 medically recommended abortive, but many doctors don't prescribe it.  You need to push for that. An optimized system stops most attacks for most people in ~10 minutes, give or take a few.  Many people believe that sumatriptan makes attacks worse and cluster periods longer.

It sucks to have CH, but you are lucky to have had it diagnosed so quickly.  The average time to a diagnosis is close to five years, and people undergo a lot of misery during those years.

As a long-term preventive, you should seriously consider the vitamin D3 regimen, which is described in the ClusterBuster Files section of this board.  There's quite a bit over in those files that you should become familiar with, include "busting," which is described in the numbered files, and also recognizing possible triggers, which you can read about in one of the files.  You should probably also read "Bob's Big Guide" over there.

This is a good discussion of pharmaceutical strategies: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf  There are some promising clinical trials going on right now of things that might help.

Here's a list of possible abortive/preventive strategies from another post:  Energy shots (5-Hour Energy) at first sign of attack (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue)   Stay hydrated -- lots and lots of water.  You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help.

 

[Bilal]

Thank you very much for all this information and the fast reply. I'm taking 40 mg Verapamil (2 40 mg pills per day). I'm taking 50 mg sumatriptan succinate tablets. My primary concern is with the fact that every case of CH I've seen so far is described as a bout of SEVERE pain, so much so that it causes some people to become suicidal. I've heard the pain described as "being stabbed with an ice pick" "being hit on the head with a sledgehammer" and "feeling like my eye sockets are being burned from the inside". This really freaked me out as I haven't experienced anything close to this level of pain, the first time I had a cluster headache the pain was the highest, but even that was like an 8 for me. All subsequent headaches have been a 6 at most. Could this mean that i was misdiagnosed because I did some research and found out that there are conditions where people experience symptoms similar to CH but might have a more life threatening issue like meningitis or a brain tumor. My doctor says I should get an MRi but I'm an international student in Wichita, Kansas and can't possibly afford an MRi in the USA. The most I can do is wait two months and go back to my home country in the summer vacations if I HAVE to get an MRi. I told this to my doctor and he agreed with me. I've scoured the internet as much as I can on my own and have come up with more questions than answers. I would appreciate any input on my issue.

[CHfather]

Naturally, you should have an MRI.  Everyone with CH-like symptoms gets, or should get, an MRI. 

If you're not going to have an MRI, then you might as well treat it as CH and see what happens.  I didn't want to say this in response to your first post for fear of scaring you, but for many people with CH, the first attacks and cycles can be more mild than what they experience later. So you need to learn about managing it. Sumatriptan tablets almost never help CH, because the attacks ramp up too fast for the tablets to take effect. If your attacks are predictable, you could try taking a tablet or two a couple of hours before you expect it, but you really want to try the nasal spray. 80 mg/day of verapamil is a very, very low dose, also not likely to have much effect. Maybe your doctor is proceeding cautiously, and will steadily increase that dose. It also takes a while for verapamil to get into your system, which is why some doctors give a steroid (prednisone) taper to reduce the pain while the verap has a chance to take effect.  For your next attacks, try some of the things I listed, probably starting with the energy shot.

[Bilal]

Thank you for all of your input and advice, I will definitely try the oxygen tank, as it seems to be the most reliable relief. I also wanted to ask, how common or rare is it to get CH-like symptoms but not actually have CH?

[CHfather]

I'd say that usually the misdiagnosis goes the other way: CH is diagnosed as any of a number of other things (sinus problems, migraine of course, tension headaches, tooth problems).  But a class of headaches called hemicranias is very similar to CH.  You should look that up.  The good thing about hemicranias is that they're preventable with an anti-inflammatory drug called indomethacin; the bad thing is that indomethacin can be very hard on the digestive system.

[Bilal]

My doctor initially gave me some indomethacin pills and I took them for 10 days but continued to have headaches every 3 or 4 days. That's when he told me I might have CH, but I should get an MRI just to be sure. I should also add that ever since I started taking the Verapamil pills, I've been having  headaches with one red teary eye almost every day. But these headaches are manageable, the pain is a 6 at most. The only headache that genuinely made me get up and start walking around because of the pain was my very first CH-like headache.

[Roadie]

Hi Bilal,

 

I’m sorry that you’ve had to find your way here, but welcome anyway.  Certainly, what you’ve described does sound like CH and quite similar to how I remember mine starting.  I was 18 when mine started.  I was woken from sleep one morning with a horrible piercing pain behind my right eye that I just couldn’t ignore.  It probably only lasted 15-30 mins and then I went back to sleep.  Another one struck during the day a few days later.  They became more frequent but then died away within 2-3 weeks.  My first few bouts were always like this.

 

Your doctor sounds pretty switched on.  He has looked to rule out hemicrania continua by trying indomethacin and has then gone for the standard front-line CH treatments.  But I agree with CH Father – 80mg of verapamil daily is probably too low to be having any sort of effect.  I’ve used 700mg daily in the past.

 

I can think of a handful of really appalling CH attacks I’ve had over the years, but I reckon that the bulk of my attacks would have been 5-6 on the pain scale and they are manageable, especially if I’m sitting up or able to walk around.  It took me a long time to realise that lying down made them much more painful.  So your description sounded very familiar to me.

 

Personally, I haven’t had a full CH attack in 14 years, but nowadays I suffer with bouts of “shadows” which can last for more than a year, and I never truly believe the CH attacks are gone forever.  For me, sumatriptan injections worked very well and the nasal sprays were also good, if a bit slower.  It’s possible that verapamil actually aborted 2 of my bouts, or at least controlled them.  I hope it’ll work for you but you should definitely be talking to your doctor about increasing it.  You must do this under supervision and with regular ECGs.

 

Good luck,  Joe

[spiny]

Hey Bilal!

I only have one add to put out there. It sounds like you are on Extended Release Verap - taken twice a day. The older short acting variety has been shown to provide better relief. You can tailor the taking to when you normally get 'hit'. You just want to keep them spaced out. Say 4 hours between.

I used to take mine at noon, 5pm, and 9pm. Most of my hits are nocturnal, so I took most of my preventative later in the day.

The D3 Regimen is very effective for many and not expensive. Just over the counter vitamins. You would likely see some results in about two weeks. It is really good at reducing the severity of hits and slowing ramp up time. Some patients have gone pain free with just these vitamins.

[Bilal]

Thanks for the advice guys, I'll definitely refrain from lying down during a more painful attack! Also, can you please link me to the thread with the D3 Regimen info, or give me a summary of what it entails? Thanks for all  the help guys, I truly appreciate it.

[Bilal]

Also, I keep hearing about "shadows" but I don't know what they are, can anyone please explain?

[CHfather]

D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

[spiny]

Shadows are low levels of Ch or Ch like pain. They put you on edge usually because you feel like a hit is coming, sort of ' Hey, I'm still here!' Many times the hit does not materialize, just the nagging 'shadow' pain.

 

[dmlonghorn]

3 hours ago, spiny said:

Shadows are low levels of Ch or Ch like pain. They put you on edge usually because you feel like a hit is coming, sort of ' Hey, I'm still here!' Many times the hit does not materialize, just the nagging 'shadow' pain.

 

I too have been curious about "shadows", ironically, I just wrote this update to my family yesterday:

"I still feel, what I call, 'tinges' of headache pain that typically coincide with the timing of what would be an attack, so 'The Beast' is letting me know he’s still hanging out, probably pissed off he’s had to sit on the sidelines while the steroids are getting all the attention. Hopefully, he won’t be ready to go full beast-mode on my dome when the steroids wear off."

Thanks for connecting the dots Spiny!

[CHfather]

For shadows, try ginger.  If you can get some raw ginger, slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it.  You can add honey, sugar, etc.  Crystallized ginger and real (strong) ginger candy are also good (for shadows, anyway).  Candy from Ginger People is strong.  Make your own crystallized ginger candy: http://www.foodnetwork.com/recipes/alton-brown/candied-ginger-recipe-1944906  Someone once posted "Ginger and honey on toast. Yum!"

Energy shots (5-Hour Energy, for example) are also sometimes good for shadows.

[dmlonghorn]

33 minutes ago, CHfather said:

For shadows, try ginger.  If you can get some raw ginger, slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it.  You can add honey, sugar, etc.  Crystallized ginger and real (strong) ginger candy are also good (for shadows, anyway).  Candy from Ginger People is strong.  Make your own crystallized ginger candy: http://www.foodnetwork.com/recipes/alton-brown/candied-ginger-recipe-1944906  Someone once posted "Ginger and honey on toast. Yum!"

Energy shots (5-Hour Energy, for example) are also sometimes good for shadows.

Interesting, thank you! I have My wife has some "Ginger Beer" in the fridge, know if anyone has tried that? Despite the name, it contains no alcohol.

Edited March 18, 2018 by dmlonghorn

[CHfather]

Yes, some people use ginger beer.

[jon019]

7 hours ago, spiny said:

Shadows are low levels of Ch or Ch like pain. They put you on edge usually because you feel like a hit is coming, sort of ' Hey, I'm still here!' Many times the hit does not materialize, just the nagging 'shadow' pain.

 

Shadows are weird...at one point a shadow...for me...was just the prelim for a hit. But as, spiny says...they don't always presage one. Mostly now, it's what I live with....sometimes all day (can I say a fella can get used to them (considering the alternative) without pissing you good folks off?) Fortunately...you will eventually learn the difference...which I really can't explain.....you just know this aint gonna progress. Odd in other ways, shadows are really hard to "kill" for me....very resistant to O2, energy drinks...and I don't waste a Zomig on one anymore...gotta save them pricey/insurance restricted bullets..........and usually a single point of pain rather than the trigeminal pathway.....

BTW...guess I haven't been paying attn...don't recall hearing about ginger ...and I eat crystallized ginger and drink ginger beer regularly. Probably cuz I'm just too dumb to recognize "hey that worked!"...............

Best

Jon

[Bilal]

I see, that clears things up a lot. I have a full on CH attack at least twice a week but shadows are around for at least 5 days every week and they last up to 8 hours. But the good thing about that is that their manageable, I can't really concentrate on my studies with the shadows around but I can play video games and I stop feeling them after I get immersed in the game. Also, can somebody explain the significance of energy drinks to me? How can Redbull or Monster help with a CH attack?

[dmlonghorn]

1 hour ago, Bilal said:

but I can play video games and I stop feeling them after I get immersed in the game.

If your full-attacks were predictable enough, could you immerse yourself in a game, let's say, 30-60 mins before the attack is supposed to start and see if it reduces the severity?

[Bilal]

Unfortunately not, because the very first time I had a Ch attack ( 2 months ago) and a few ones after that, I was playing video games before the attack started and I noticed the buildup of pain. Eventually it came to a point where I had to put my controller down and hold my head. If anything, concentrating on the game during the attack probably made it more painful because my most painful attacks happened when i was sitting in front of a screen (either doing my homework or playing video games). Gaming only helps you ignore shadows I guess.

[Bilal]

Also, I forgot to mention this, but none of my attacks have been predictable so far. I only start to notice them when the pain starts building up.

[dmlonghorn]

4 minutes ago, Bilal said:

Unfortunately not, because the very first time I had a Ch attack ( 2 months ago) and a few ones after that, I was playing video games before the attack started and I noticed the buildup of pain. Eventually it came to a point where I had to put my controller down and hold my head. If anything, concentrating on the game during the attack probably made it more painful because my most painful attacks happened when i was sitting in front of a screen (either doing my homework or playing video games). Gaming only helps you ignore shadows I guess.

Damn. Yeah, I noticed that when I was listening to an audio book yesterday, for a good 2 hours, I didn't experience one shadow.

Edit: I was experiencing shadows before listening to the book and the shadows resumed in mild form, about an hour later.

Edited March 20, 2018 by dmlonghorn

[Bilal]

Well, in my case it's not that I didn't experience the shadow or didn't notice it was there. I was able to "tune it out" because the excitement I was getting from the game was more than the misery I was getting from the pain, if that makes sense.