i'm a mom of a 36 yo son whose cluster headaches just started acting up again after 5 yrs of nothing

the 2nd doc he went to gave him a med that starts with "C" that seems to be helping...but we'll see

this time they are lasting hours instead of minutes

i have read a lot in the last 24 hrs...on here...from doc sites and other places

he also got chantix to help stop smoking.  he knows it is something that might cause the clusters.

i don't have too many questions right now..but wanted to check in.  yesterday i had soooo many questions but you have some good info here

one question is:  do ppl here find lyme disease has anything to do with cluster headaches?  my whole family has or had lyme except this one son.  on the lyme sites it seems some with lyme get them and some don't.  also sometimes lyme treatment makes them go away sometimes not.

i'm glad i'm connected here.  i have trigeminal neuralgia so i know what pain is.  thanks for this site.

Hi lpkayak,
Welcome to the board and you have now connected to probably the BEST site for CH on the web...
The Cavalry will be along soon with their support and questions to you re lyme disease and CH...
I have no knowledge at all on that connection, if there is one?

The empathy you have with your Son must make your bond closer and makes you be a better supporter at the same time, he is Very lucky to have this link and understanding with his Mom....

We are here for you both lpkayak.

Respect to you

Gary

Please tell us where you live. Follow the next line to a message which will guide you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
=======================

As you have time, explore the buttons, left, starting with the OUCH site and its many internal links.

As you start to grasp what you are dealing with, don't hesitate to ask questions. Reading the messages regularly will give some helpful information/experience even it the issue is no exacting the same issuess that you son is dealing with a the moment.
---



Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
====
See the PDF file, below.
===
Explore:
A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

---

Hello Ipkayak!
I don't know about the Lyme disease connection but am curious now!
My mom used to care for me too (I lived at home while going to grad school). I think back now on how brave she was not knowing anything about why or what was happening (this was decades before we finally learned about CH) and she no doubt felt helpless but still did her best for me.
It's wonderful you can help your son in his time of need.
Welcome to our site!   :)   Please read the information on Oxygen, it can make a hugh difference.
-Gary

I don't know of any connection between Lyme disease and CHs, unless having had Lyme disease is an effective preventative...I've never had Lyme but I have had CHs for more than two decades. Yes, they can progress. No, alcohol and smoking are not the causes...they just don't help, and can be effective triggers for an attack. And yes, trigeminal neuralgia is pain as exotic as CHs. There are times I am hit with both in one attack and boy is that interesting. Please do read here. There are lots of possible avenues for preventing/aborting CHs, although admittedly no cures. And encourage your son to come on aboard...we are very good at listening. Blessings. lance

thank you for your replys.  i live near my son and can help because i am retired...but i am not really his caregiver.  i will tell you about him but not sure if he will join.  i know he is at a stage in his life where it is all about work...work...work.  the reason he called me(first time he asked for help in 10 yrs i think)is because he had a 2 hr CH when before they were only 5 min.  also they are continuing for a week so far.  i haven't talked to him since he started the med...except right after he took it he thought it was helping.  he had to deal with a wake out of state and i will touch base when he gets back.  i'm assuming he went...that was the plan...but i know a CH could have changed the plan.

thanks again...we are on the jersey shore right now.  i recently moved here from nh and i taught for 30 yrs in ny before that.

ok-its me again.  he is still having a very hard time.  the medication didn't work.  he is having 15 min to 2 hr headaches now.  going on second week. found out he has a huge deductible...more stress.

we are near asbury park nj and need a good neurol who understands the headaches.  can anyone suggest one?

there is a headache clinic in freehold nj.  does any one know if they are good?  they are pretty close.

should i be asking these questions smewhere else?  thank you.

lpkayak wrote on Mar 11^th, 2011 at 4:45pm:

ok-its me again.  he is still having a very hard time.  the medication didn't work.  he is having 15 min to 2 hr headaches now.  going on second week. found out he has a huge deductible...more stress. we are near asbury park nj and need a good neurol who understands the headaches.  can anyone suggest one? there is a headache clinic in freehold nj.  does any one know if they are good?  they are pretty close. should i be asking these questions smewhere else?  thank you.

What medication didn't work? If you can find out more details we can give more advice.

Typical medication for someone starting with CHs is:

• Prednisione - a dose starting high (about 60mg) and tapering off over 2 weeks - this will act as a preventive whilst a longer term preventive builds up
  
• A longer term preventive, like verapamil or lithium - this will cut down how many CHs he gets
  
• Oxygen - high flow rate (15lpm or higher) using a non-rebreather mask - this can abort a CH in minutes - read up using the link on the left
  
• Imitrex - an alternative to oxygen, although it's expensive
  

If he has problems getting medical oxygen, people often use welding oxygen which is the exact same stuff and equally effective.