Is it Cluster Headache - need help

[Phantom99]

Hello everyone. I want to share my story of headaches. I am still not sure if it is cluster, migraine or something else. 
 

I am 36, my first headaches started when I was 14 or 15 it was mainly behind one eye lasting 30-40 min. Back then it would come once or twice a week and go away for a while. Then they started to come more often around when I was 18-20. By the age 25-30 the cluster cycle would start once a year regularly and last for 4 to 6 weeks with episodes once or twice per week. 
 

When cluster cycle starts, usually pain is mild and it progresses over the few weeks to being 8-9 out of 10 (10 being strongest pain ever). Pain is focused around back of the eye making it tear, pain can radiate to the forehead, nose would get clogged or be running. During the attack I may have hot flashes and then feel cold after pain subsides. 

Episode usually start either at 9am but not later than 2pm. Some days can be 4-5am but not often. 

Fast forward to today, this cluster cycle started about a month ago but the intensity feels stronger and each episode is lasting almost 2 hours now. After 2 hours of strong pain, I still have some mild left over pain that can last for a few hours. The episodes come every second day now. 

If I take Advil at the first sign of the headache, it would help monimize the pain from 8-9 out of 10 intensity to 5-6 out of 10. Usually takes 30-40 min for Advil to help.

I do have Rizatriptan, in past I would take it once or twice during cluster cycle but not often as I was told it can make episodes come more often. Yesterday I took it during the episode and it took 30 min to work and in about 50 min it minimized the pain to 3 out of 10.
 

My question is, does it seem like it is a Cluster Headache or Migraine? Or perhaps something else? 
Is it normal for cluster cycles to get worse over the years and last longer and come more often? 
 

I have a neurologist who is certain it’s Cluster Headache but we never did any tests to rule out other stuff. My doctor prescribed Topamax saying it would stop the cluster period. I didn’t start it yet. 

Also has anyone tried acupuncture for this headache?  

Thank you for reading this and for your help. 

[devonrex]

The location of the pain along with the signs and symptoms you feel during are classic cluster signs. Yes they can change in timing, length, frequency, go from episodic to chronic or vice versa, as several say here, the moment you think you know your cluster, it changes. 

O2 is a go to suggestion, 15-25 litre per minute in a good non-rebreather mask. 100% oxygen. If your dr knows what clusters are you are ahead of the game, so few do.

I would get the other tests, as a precaution. Topamax aka topiramate has some unpleasant side effects, and is not always the first go-to drug. 

Generally any abortive meds, such as triptans and such for clusters are rarely used orally, since it takes a while to work, nasal triptans or injections work far faster, but triptans can cause rebounds if over-used. If advil is working for you, you are very lucky most pain meds up to and including opiates and such tend to do nothing for a cluster. 

I would go through the diagnostic criteria with your neuro, get the tests to rule out other causes and maybe ask/talk about a prednisone taper, verapamil combo before going with the Topamax. Others will have more suggestions and ideas, you may also want to have a look/search for the vitamin d3 regimen here, many have had great success with it.

 

[kat_92]

Hey @Phantom99

welcome to the forum. It sounds like what you’re describing as clusters. Migraines don’t usually disappear for a few years and come back out of no where. Unless you make some sort of drastic change, moving, completely new diet etc. it’s good that you have already recognized some patterns so you can act appropriately. The mild pain you are having after an attack is a shadow. I would go buy fresh ginger and grate it, throw it in a blender with some honey and Apple cider vinegar and take a shot every day! Ginger is good for shadows. I also have ginger capsules you can get at the grocery store (not as affective as fresh though), AND it’s good for you :). I would automatically find a new neurologist. Prescribing topamax when he even said what you have are clusters is not a good line of treatment. It’s not a good drug. I was on it for a long time and the side affects were brutal. They didn’t help my headaches either. I would put all of my energy into getting some oxygen. It may take a while, but if you are persistent you will get it! The D3 regimen is something you can start right away without a script. There is a link for it on here if you just search for d3. No script needed, and the vitamins can only help you over all. I would ask my doctor about verapamil instead of topamax. It’s a way better medication when it comes to treating clusters, and I can’t imagine the side effects long term are anything like with topamax. Hang in there 

kat

[CHfather]

Here's some basic info about treating cluster headaches (it does sound like that's likely to be what you have).  Among other things, there's a link in here to the D3 regimen, which the previous posters recommended (for good reason).  You should start the D3 right away.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Check out the "Triggers" link, too.

I have a slightly different view regarding the Topamax.  Yes, it is not a first-line CH treatment.  So, if you can get a revised set of prescriptions quickly (something like oxygen, a nasal or injected triptan, verapamil, and maybe a course of steroids), those (or something like them) are your best bet.  You will also see in the post I linked you to some strategies for dealing with CH without prescription meds (energy shots or caffeine;  "busting"; Benadryl; standing in very hot water; and some others). But there are some people who take Topamax without severe side effects, and it helps them.  So if you are going to be without the better prescriptions for a while and the non-prescription methods aren't helping enough (D3, for example, can take several weeks to get to effective levels), I would consider taking the Topamax and seeing how it affects you.  If you don't want to continue it, you can stop.

Incidentally, if you want to look into posts on a topic, you can use the search bar at the top right of the page.  You'll find lots of information that way.

[Phantom99]

Thank you for all of your responses. I did ask my neurologist about Oxygen and he explained that it is difficult to get it approved. Is it possible to buy it without doctor’s prescription? 
 

I will try high dosage of D3. 

Surprisingly what also helped me in past is breathing cold air just before headache gets strong. It could help abort it. 
 

Has any of you tried an acupuncture? 

[CHfather]

Acupuncture is almost always ineffective.  I think a few people have benefited from it.

WHY do neurologists keep finding reasons not to prescribe O2.  It might be difficult to get it approved by insurance, but with most private insurance companies that battle can be won, and sometimes there isn't even a battle. Medicare and Medicaid won't cover oxygen.  Also, having a prescription allows you to pay the O2 provider out of pocket if that's a necessary way to go. 

3 hours ago, Phantom99 said:

Is it possible to buy it without doctor’s prescription? 

If you read the post I linked you to, you'll see the answer to this question (which is yes, by using welding oxygen).

3 hours ago, Phantom99 said:

I will try high dosage of D3. 

Be sure you do the whole regimen, which is more than just high doses of D3.

3 hours ago, Phantom99 said:

Surprisingly what also helped me in past is breathing cold air just before headache gets strong. It could help abort it. 

Yes (see the post I linked you to).  Cold air can help.  If it's cold outside, that's one way. Others inhale from an air conditioner or open freezer.  If that helped you, O2 will be great for you.

[Pebblesthecorgi]

Sounds consistent with cluster headaches more than most other things.  The only real inconsistency is when you are getting hit.  Classic attacks often awake one from a sleep with the time being fairly consistent.  Non steroidal like ibuprofen usually don’t do squat so the relief you perceive might be coincidental.  

Just because oxygen is difficult to get doesn’t mean its not worth aggressively trying.  The exception would be government provided insurance (Medicaid/Medicare) where you are certainly out of luck.  It’s worth pursuing welding O2 otherwise.  If you can abort a headache with O2 that sort of cinches the diagnosis, very rarely other headache conditions respond to oxygen.  In cluster headache folks it is very reliable.

In the end you must be the master of your treatment.  Research options and partner with your neuro to direct your own care.  You bear the burden of this godless condition so taking as much charge as you can is important.

Topamax is a very plus minus drug in my experience.  Personally the side effects were too much for me to bear.  It seems a rare soul who gets enough relief to accept taking it especially if there are other more palatable treatments out there.

CHFather is right on in directing you to summary info of what the collective has learned over time.  Personally the most frequent abortive are Oxygen, O2, oxygen followed by chug a lug energy drinks and high dose steroids (60-100mg a day for a couple of weeks).  Imitrex works but there is a price to pay: rebound headaches and extended cycle.  Prevention is a mixed bag.  The reports on D3 are encouraging and there is little downside. Quercetin has been recently brought up up very little data, but , little downside.  Most of the pharma solutions for prevention verapamil, topamax, depakote etc are more minus than plus, individual responses are not reliable.  THe CGRP inhibitors show promise (at correct dose) but for me the jury is still out.

Busting seems to work and has a long track record in this community.  This is a personal choice and I would advise careful scrutiny before deciding its worth trying.  Mushrooms have saved many lives.

 

I am not sure how much additional work up you need.  Since you have had this condition a couple of decades the chance of a scan being helpful approaches zero.  Clusters are a diagnosis of exclusion and time has excluded most other diagnosis.  The cost of an MRI buys a lot of oxygen.

 

Welcome and stay in charge of your life.

[Phantom99]

It’s so strange. Today I had an early morning Episode That started at 6am, I took Rizatriptan at first sign of the pain and it had no help. Literally I think it had zero help. Intense pain lasted for 1 hour and 40 min, after that was shadow with very mild pain. 
The pain is in waves kind of, it’s super intense then for a minutes it seems like it may be getting better and then back at it. Strong paid behind the eye, at some peak pain moments radiating to the forehead and the middle top of the head.

I think today was the worst episode I’ve ever had in my life. What worries me is that it’s been getting worse over the last 20 years, not better. 

My doctor prescribed Sumatriptan 20 MG nasal pray, I hope it will help. 

After today’s headache I will be demanding oxygen even if that means payout out of pocket. 

 

 

[kat_92]

@Phantom99

I’m wondering if you may have Hemicrania continua if you have been having steady pain all day and then it comes in waves. Now many times a day would you say it is intense? 

[kat_92]

Have you considered busting? 

[Phantom99]

6 hours ago, kat_92 said:

@Phantom99

I’m wondering if you may have Hemicrania continua if you have been having steady pain all day and then it comes in waves. Now many times a day would you say it is intense? 

From what I read Hemicrania continua is present all the time. My intense headaches usually go for One or Two hours and after that, it is very mild like 2 out of 10. I believe that's called Shadow. 

My headaches usually would start from either at around 9 am or around 1 pm. Last few days it started at 6am.    

[spiny]

25 minutes ago, Phantom99 said:

I think today was the worst episode I’ve ever had in my life. What worries me is that it’s been getting worse over the last 20 years, not better. 

Unfortunately, that is common. Have you tried the nasal spray? It will work faster than a pill and what you found this morning is why it is recommended that CHer's use the nasal spray or injection. A pill is often too little and too late getting into your system to work.

The Trigeminal Nerve feeds your whole face on one side and 1/4 of your head - the front quadrant on your CH side. It has three main branches and many smaller ones. 

Did you try an Energy Drink or coffee or perhaps a V8 Energy? Caffeine helps a lot and many swear by the Taurine in the energy drinks. Slam it down at the first twinge.

The waves of pain I think many can identify with. For me, it is like every wave is a bit higher, the tide coming in. As it ends, rather like the tide going out - the branches of the nerve don't light up all the way to the end of the branch. It feels like my brain is going back into my head at times.

Have you read the links shared with you yet? They give a ton of info! 

Had an emergency in the house, so did not hit 'submit' yesterday. 

ATB

[devonrex]

I swear by monsters, they do help me. I make sure I get the zero calory ones though, no need to chug 100's of mg of sugar too. As for 'waves' mine tend to come in, ramp up in fairly predictable line, then peak and stay, with the occasional sharp stab or 'pulse'. Nice (relatively speaking) thing is I can usually predict where it will end up by what level it starts at. Starts a 5 will likely peak at 8, start at a 7 or 8 and I am going to be fucked.

 

It is also quite common for times, frequency, start and stop times, pretty much any thing that can  be changeable about ch, will change over time.

[Phantom99]

Is that normal for Cluster headache to be strong for 2 hours in the eye and then continue in mild form for another few hours more?

Also is there any indication or a way to tell when cluster cycle is coming to an end? Headaches getting less powerful etc. 

[dehabel]

My heart breaks for you enduring this pain.  Luckily, you have stumbled upon such a wonderful group of helpful and kind people.  My spellls come in like a lion and out like a lion.  At both ends I get a couple of days of the clusters hitting me sporadically and short spurts with these weird like electric voltage jabs every so often in my head.  It is almost like it is planting itself from outer space or something.  Then they are majorly debilitating for about ten weeks, waking me anywhere from 1-6 times in night, I call it a migraine hangover during day, though that is bad terminology.  Usually the last one extends into the morning/day and then it takes off for who knows how long.  Eight years last time, two years the past two cycles and prior to that I got them once to twice a year. 
 

When I am in the spell and they hit me, I can also predict time and intensity. When they leave, they leave. No pain until morning when I feel hungover and pressure behind my eye that never quite develops.

The injections work for me, but you can only take so many.   I have an oxygen prescription but can’t find anyone to fill it. Thankfully, I am on Day 10 pain free, thiugh I am not sure why yet.   I am on steroids, verapamil, D3, and having phlebotomy  where a pint of blood is taken twice a week for a different issue.  I feel like they are gone, there is not an inkling of a cluster.  When I have taken preventatives in the past during a spell I remember still getting them.  We will see, I guess I could try a margarita but it is not worth it until I quit the meds.  I am at 40 mg of prednisone and 240 mg of verapamil.  However, they stopped with my first wrong mg pack of steroids, I think I was on less than 20 mg a day when they stopped. 
 

Hope this was helpful and I pray You and everyone else gets relief soon! 

Edited June 25, 2020 by dehabel