Hi

I have been diagnosed with chronic atypical clusters. The pain started in 2004 after getting mono. Lots of things were tried and I was sent to a PM doctor. A SQ catheter that was injected with lidocaine was my life saver. The pain stayed away until last Jan when it had to be removed due to a severe staph infection. The pain came back and I had to try the medication route again. It went away in August and stayed away until this March. Not much luck so far in breaking it this time - the only thing that has worked is Tegretol which is odd since it is mainly for TN
(I don't have TN symptoms). I am a medical student and have had to finally withdrawal after taking several leaves of absences. My husband and I are divorcing - he doesn't want to deal with the chaos anymore. It feels like this pain is never going to end - it is constant with no breaks and I am exhausted. I go for days at a time without being able to leave the house. How do you guys cope when it goes on for months  with no break? How do you deal with the isolation? Thanks for reading my post.

Hi Terra, as many hear have said before, and better than I,, we live between the hits. Its never easy, we try new meds, new little tricks, we try , try , and try again. NEVER give up!!!! This is the place to find an understanding ear, or the place to come to vent. You didnt state weather you try oxygen, it works wonders for most of us , but not all. This is DEFINATELY the place to educate yourself on the tricks and techniques used to fight this ugly beast. read, read, and read some more. The information here is boundless!!!!  Hopefully, you will soon find something that helps you with your struggle. God bless!!!    Tuck

I do hope that you have a good headache doc in your stable of providers! Apart from the usual run of meds which we use there are several surgical (neurological) techniques which are gaining some research attention. Have your docs dicussed them with you?

Our collective experience is that too many docs, even neurologists, are poorly trained in complex headache conditions and so my question is whether your PM doc is up to  the task at hand?

If you wish to explore this option--headache specialist:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Never give up ...ever.
Keep up the fight. It's hard but you can do it.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
thebbz
all the best

Hi Terra & welcome,


If you read nothing else then do read the link posted by thebbz. It will give you a real insight - I found it the single most important peice of info on my CH journey.

Looks like you've had an awful time. Mant of us have wives/partners who stick with us through thick and thin - it helps us to get through.

Seems like you have lost a partner and a career - how do YOU cope?

Hope you find something that works for you - Melatonin does it for me - but what works for one doesn't necessarily do the trick for another. I think the message is don't give up - keep trying and hopefully you will reach the nirvana of PF days.

In the meantime you will find help, support and understanding here amongst your fellow clusterheads.

regards,

Melvyn :)

Not much to add, you've gotten some great advice. The good news is, you are not alone any more, welcome home.

Guiseppi

Sorry to hear about your CH.  Think of it like this, everybody has got something and this is your something, this is what makes you well..  you. So lets see what your made of kid, are you just gonna lay down for this stuff, or get up and fight!!! So get your weapons ready and go kick some beast ass!! And when your cycle ends, and it will end, and your back to being your normal fine self again your ex-old man will be hurtin alot more then, and you can enjoy squishing him then!!!  Feel better...Coach Bill

First, thank you for posting.  I often wonder how many voice there are out there on the net lurking and learning without actively joining this little community.


terra wrote on Jun 21^st, 2008 at 2:43am:

How do you guys cope when it goes on for months  with no break? How do you deal with the isolation? Thanks for reading my post.

You cope by taking it one hit at a time and then, when it's over, forcing yourself to live your life until the next one comes along.  Sometimes it's easier said than done but the more you do it the easier this shift in minset becomes.

Most folks in your life don't have the direct experience of your pain so they lack the ability to truly understand it.  Some of us are lucky enough to have supporters around that give what care and comfort they can.  

We all find a lifeline to community throug shared experience here on this board.  Welcome home hun  :)

-Dennis-

Dear Terra:

Welcome to Clusterville -- a family of support.  We are the ones who will understand where you're coming from.

Some of us are chronic sufferers or have mixed headache types.  We never get much of a break.  Try to find the tools that will offer you some relief, for me it is Oxygen with a demand valve regulator and Imitrex.  For others there are energy drinks with taurine and caffeine.  Others have other tools.  You have to find the ones that work for YOU.

You have to decide that you can live life to the fullest extent you are able, or be ruled by the pain (the beast).

I've lost a career, in part due to the headaches and my Ex- initially thought my clusters were psychosomatic.  Others can relate to similar losses.  Don't give up without a fight, in fact NEVER give up.

Pull up a chair, put your feet up and dive right in here.

Wishing you all the best,

Ray