Hey y'all! I’m 48 years old and have been married to my high school sweet heart for 28 years. We have 3 grown kids (well, the youngest is still in college) our oldest just got married.  We live in a small town in South Carolina.

21 years ago I got sick with viral meningitis from a mosquito bite.   The meningitis triggered migraines which I’ve had ever since.   They’ve evolved over the years, as have my treatments.  I take several preventives but in spite of that they have become chronic in recent years.

Sometime in the last year, I can’t put my finger on it, I started having cluster headaches.  I just thought it was my migraines changing.  I was waking in the night with blaring pain, pacing around the house, or if I was lucky, I could sit but I would rock in place.  I would take my migraine meds but it was just a bandaid.

During this time, my neurologist office started performing sphenocaths.  I started getting them, sometimes it helped, other times it didn’t.  My son’s wedding was coming up and I was terrified of being sick with a migraine that day.  My neuro decide to order a spheno once a week for 4 weeks leading up the wedding.  That got me through it.  But about a week after (the wedding was Sept 6) everything came back.  At the same time, my neuro left the practice and the neuro that had been performing my sphenos agreed to take me on.  After another spheno and an infusion we really sat down and talked, I explained how I get woken up and have to pace.  She asked if my eyes or nose run...yes, my nose runs terribly!  Is my nose stuffy? YES!  More questions and she said “you have cluster headaches; I can’t believe no one has figured this out for you before”.  I felt like crying I was so relieved.

She added Verapamil to my meds, put me on a 6 day course of methylprednisolone (yuck!) and changed my triptan to imitrex injection.  My previous neuro had already scheduled me to see a headache specialist at Duke in November and I’m keeping that appointment.  I’m curious to see what he says, mainly about treatment.

So, I just found out about all this out 4 days ago, I’m still absorbing it.  My new neuro says my old neuro probably ignored my symptoms because I’m a woman and I don’t drink or smoke.  I also have problems with migraines being induced by bending over, laughing, coughing, and weather changes, so he thought it was pressure related.  I even had a spinal tap in March to check for increase spinal pressure but it was negative. 

I have a couple of friends with migraines but only one with them as bad as mine but I don’t know anyone with cluster headaches.  I’m so happy to find this forum so I can learn more than the basics I’ve read on the medical websites.

Do others have migraines and clusters? Is it unrelated? I didn't think to ask the doctor, I was in a lot of pain when we talked.  Just curious.  I know it kept me from being diagnosed sooner, having migraines and clusters at the same time is pretty confusing.

Thank you for this site! :)

welcome Southerngirl. sorry to hear of all you are going through. I am grateful to have found this site also. Clusters and the beast (pain) have a mind of their own and change within even each person let alone how they differ from person to person. I'll bet just knowing what is going on was a sort of relief and it sounds as though you are on the right track. I have suffered for some time and only recently found the site. there are MANY people on here who can answer your questions better than I can. I do know some who suffer from CH can also deal with migraines. Congrats. on your oldests wedding; our son just turned 30 and has been married a few years now. time flies. Use the site as you have started to do and work with your neuro. headed down the right road. I am glad you found the site and I think you will be too !!      

Thank you for the welcome Don B. Time sure does fly, especially with kids.

I'm reading all I can on the site, learning so much!  This really is a Godsend. :)

It certainly is. just fyi oxygen is an excellent means to abort nearly all attacks if used properly. there is a tab to the left with more details. As I mentioned, there are many on this site that can assist. Glad you found it 

Thanks, that is something I'm looking into.

also wanted to make sure you saw this.....a post from 2006 by "Ghost"   
Helpful Hints

•      At each level of the Kip scale see prior and add to where you are.
•      Most attacks last from 15 min. to 3+ hours.
•      O2 is a valid and preferred treatment at most levels of pain to end(abort) a Cluster Attack sooner. Usually administered at 10-15 lpm with a Non re-breather mask.
•      For most it is also necessary to use Imitrex injection. see "imitrex tip"
•      Most oral meds and inhaled meds will not affect the attack you are in now, but if taken prior to attack may result in some relief.
•      The Levels listed here are a guideline to measure the intensity of an attack.
•      For most the attack ramps up rapidly and subsides almost as fast, but it may take several hours to recover from it. Very energy draining.
•      Caffeine and Red Bull may also assist in aborting an attack.
•      Most Cluster Headache sufferers are misdiagnosed for many years, some with sinus headaches, tension headaches, migraines, and even toothaches/infections.
•      Cluster headaches can and often are accompanied by other types of headaches, Sinus, Stress, Migraine, and others making it hard to detect and/or diagnose.
•      Cluster Headaches are real and should never be considered a minor inconvenience,  The cause is still being debated but there is no known cure as of yet.
•      Remember you are the one suffering, don’t let others tell you how much it doesn’t hurt!
•      Shadow; some of the symptoms but without a measurable amount of pain(pressure).
•      Twinge; Short burst of pain usually to fast to produce side effects.
•      Phantom; Body experiences all symptoms of an attack without measurable pain/burning sensation. (Droopy eye, Running nose, and Tearing.)
•      Episodic; Episodes of Cluster headaches that are under 1 year in length, or with 30 days or more during a calendar year of being Pain Free.
•      Chronic; Episodes of Cluster headaches that are over 1 year in length, or with less than 30 days during a calendar year of being Pain Free.
•      There are various methods and treatments, both conventional and non-conventional. Overall it seems Oxygen at a higher rate while using a Non re-breather mask seems to be the most effective abortive.
•      Some people experience Cluster attacks as a result of a trigger ie. alcohol, smoking, foods, ect…
•      Never let a doctor, or other medical professional dismiss it as psychosomatic, or imagined pain.

Ah, the joys of living with more than one type of headache. Welcome home, SouthernGirl, and the trick now is to learn to pick between them so you can attack each separately.

As you're reading around our little forum you'll also come across references to a batch of vitamins called the D3 regimen which might be worth a look as happily it seems to work in both CH and migraine.

Also, triggers are a big thing with CH and learning what to avoid can be a bit of a help.

Please let us know how you're getting on because we care,

Brian down under.

Hi and welcome SouthernGirl

There are a few of us here who are so lucky that we get both CH and migraines, although knowing if they are directly connected or not is not easy to figure out. But it can complicate things as whilst many migraine medications have been found to work well for CH too, like imitrex injections, there can be some combinations to avoid. The most common migraine preventive is propranolol but you shouldn't use it with verapamil with is a good CH preventive. Similarly propranolol and Maxalt melts shouldn't be used together.

The combination of the two and the need to use medication that works well with both means that you really need to work with a headache specialist who can isolate out what symptom is from which headache type and how to treat each correctly.

The D3 approach works pretty well, I've been CH pain free for over 1000 days now, although for people with both CH and migraine it tends to work just on the CH and not the migraine for some as yet undetermined reason. But I'd still rather I just had one than both.

What will help you a lot is figuring out what triggers, symptoms and treatments work for each headache type so you can jump right to dealing with each headache as it arrives before it gets chance to ramp up to full strength.

Keep reading and ask any questions you have, we'll try to answer them all.

Hi SouthernGirl, and welcome,
I thought this article might be of some interest too you.

Hereditary factors are significant in migraine and might be expected to be important in the cluster headache syndrome because of their mechanistic and pharmacologic similarities. However, it is uncommon to find other examples of cluster headache in the family history. Among Kudrow's (1980) 495 patients, 18 reported the presence of the syndrome in a parent. Migraine occurs no more frequently among the cluster headache population than among random population than among random populations (Andersson, 1985). When migraine predates the commencement of cluster attacks, migraine usually ceases when the cluster attacks begin (Bickerstaff, 1959); thus, although these disorders are biologically distinct, their mechanisms are probably connected.

Hoppy.

Thank you everyone...for the welcomes and the information.

That's a great list, I'm curious about the Red Bull (I've read that before), that seems so easy, does it work for others?  I don't do caffeine.  I don't like the way it makes me feel but I'd be willing to try it.

I am looking into vitamins, I already take several but I'm sure I need to make alterations.  I have a history of malabsorption (for no known reason) I have had iron, calcium, and vitamin D deficiencies, at different times.  These are just the ones I know.  So, I struggle with vitamins.

I do have a family history of migraine but not of clusters (that I know of). 

I can't wait to see the headache specialist at Duke, I go in 2 weeks.  It's a 3.5 hour drive but worth it to see a Dr there.

Red Bull and other energy drinks with both caffeine and taurine seem to work quite well for CH and I've also found that they can help knock back a migraine too. I suspect that caffeine being a vasoconstrictor (like oxygen) and taurine being a calcium channel antagonist (like verapamil) are the reasons for it working, with the carbonation helping speed up absorption.

Caffeine is a very common migraine trigger, so you'll need to learn what the impact of taking it can be for you, but even in migraine pain medication it isn't uncommon to find that they also include caffeine as it seems to help when a migraine is happening.

As to how it feels, I'd rather that than a CH or migraine. But it is how it works for you that matters.

For CH the family history linkage is only about 3.5% from Kudrow's data, so it is 96.5% likely that you don't have a family connection.

Yes, caffeine can go either way for migraines.  I know some migraineurs who say caffeine helps them, I have tried it, it doesn't help me and doesn't make me worse but it makes me super jittery.  But I will try it (with taurine) for a cluster, it would be worth it.