Click this link to read a post I like on the clusterheadaches.com message board...

Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	I am a 35 year Clusterhead need to talk!! Sep 9^th, 2012 at 2:39pm
Back to top	Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Click Here to visit the CH.com Facebook page!

Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: I am a 35 year Clusterhead need to talk!! Reply #1 - Sep 9^th, 2012 at 4:45pm I am tired of suffering in silence, I have never talked to anyone before about my Clusters other than a few doctors and my immediate family but they don't really understand at all!! Have never had the opportunity to talk to other Cluster sufferers
Back to top	Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: I am a 35 year Clusterhead need to talk!! Reply #2 - Sep 10^th, 2012 at 3:42am People understand here, they all get it as everyone either had CH or supports someone with it. So talk, vent or whatever you want. If it helps you or others, just do it.
Back to top	IP Logged

George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: I am a 35 year Clusterhead need to talk!! Reply #3 - Sep 11^th, 2012 at 9:46am *This Topic was moved here from Funnies and Jokes* by George.**
Back to top	"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535) IP Logged

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: I am a 35 year Clusterhead need to talk!!
Reply #4 - Sep 11^th, 2012 at 10:16am

I've read all of your posts and find it impossible to respond to your medical situation without an outline of your medical history.

Would be helpful to have: history of the types of docs you have seen; what speciality is the doc you seeing now?; outine the meds you have tried-name, dose, duration of use.

The most obvious first response is to be sure you have a doc with experience/knowledge/skill in treating Cluster. With your history, anything short of a skilled doc is a real problem.
====
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help 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.

Back to top

Bob Johnson

IP Logged

thbaker41

CH.com Newbie

Offline

I Love CH.com!

Posts: 24
Bowlinggreen Kentucky
Gender: male

Re: I am a 35 year Clusterhead need to talk!!
Reply #5 - Sep 11^th, 2012 at 11:32am

Hey man Names Tim and brother I am here for ya Hell I wish I had someone to talk to at times also kinda hard to talk to your family about it as they are as much a part of it as you are. Don't know if you have felt like burden to your family I sure do at times and trying to talk to someone without this pain they just don't get it. I myself have been trying to get into some counseling I have always been a very outgoing cut up and always woke ready to take on the day with a smile and kind word to someone but when this crap hits some days I know you feel like if I were just gone everyone around me would be alot better and no more pain. So that just takes care of coping with your family. you still have to somehow get your head together to go to work which we all know is a major task to do when your eye feels like it's gonna pop out of your head and dealing with co-workers that just dont understand what you go through just to try to have somewhat of a normal life and lets not leave out the cost of this all that crap adds up real fast and trying to explain to folks that no its not a insulin injection but for headaces they just kinda dont know what to think of that most times you can tell there thinking man you must be a big sissy to let a headace make you act like this well sorry I went on and on but hell holler back hopeing you get some pain free days Tim

Back to top

IP Logged

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: I am a 35 year Clusterhead need to talk!!
Reply #6 - Sep 12^th, 2012 at 8:26am

Quote:

I think its time to find a specialist

Yes! I noticed you didn't answer Bob's query about your medical history. Does the above mean you do not have a confirmed diagnosis? I am not minimalizing you experience. It's just that we are finding too many symptoms are crossovers to "clusterlike" conditions with completely different treatments. This is why we encourage everyone to find a specialist who actually knows something about CHs. blessings. lance

Back to top

IP Logged

Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: I am a 35 year Clusterhead need to talk!! Reply #7 - Sep 14^th, 2012 at 1:33pm Hey Wimsey!! Sorry I didn't get back to you sooner! I now have been talking and dealing with Bob Johnson daily and Mike and others and have a great plan for my treatment future so things are looking up and I thank you for your interest in my treatment!!......Johnny
Back to top	Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: I am a 35 year Clusterhead need to talk!! Reply #8 - Sep 16^th, 2012 at 6:35pm Johnny, You may want to read the possible side effects of Topirimate, vision problems, is on the list. What type of O2 setup do you have? You may need a better one. Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Click Here to visit the CH.com Facebook page!

Clusterman59

CH.com Veteran

Offline

Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: I am a 35 year Clusterhead need to talk!!
Reply #9 - Sep 16^th, 2012 at 10:59pm

Hey Don!
Thanks for the feedback! Yes I am very aware of topimax and its side affects, I have been taking it for about a year now at 200mg daily and 2 months ago they upped the dosage to 400mg daily and QMG!! lips, face and head are numb, hands, arms, legs and feet too also mild hallucinations with seeing trails from my finger tips. So yes I do understand Topimax.
As for my o2 set up I am getting two brand new non-rebreather masks without holes! and I already have 8 bottles with two brand new "Good Regulators" and keep one in the car. I just got a brand new 3 neurologist team at UCSD San Diego working with me to get me up to the cutting edge.
So I think I am getting up to speed... Oh they decided to drop the Verapimil and use Depicote along with Topimax as a double preventative treatment. I start on Tues......Johnny

Back to top

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

IP Logged

Brew

CH.com Sponsor
CH.com Alumnus

Offline

Posts: 14163

Re: I am a 35 year Clusterhead need to talk!!
Reply #10 - Sep 16^th, 2012 at 11:53pm

Quote:

I just got a brand new 3 neurologist team at UCSD San Diego working with me to get me up to the cutting edge.

A word of warning: YOU will still be the best source of knowledge amongst the four of you. DO NOT stop reading here. Force yourself to do it every day. THEY will be asking you for advice if they're worth their salt.

Back to top

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

IP Logged

Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: I am a 35 year Clusterhead need to talk!! Reply #11 - Sep 17^th, 2012 at 12:13am Hey Brew! Excellent advice and I totally agree! That's how I got this whole thing started! along with some very aggressive vocabulary on my part! lol! I will take your advice greatfully!! Thanks Brew!.......Johnny
Back to top	Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Skyhawk5

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1320
Ypsilanti, Mi. USA
Gender: male

Re: I am a 35 year Clusterhead need to talk!!
Reply #12 - Sep 18^th, 2012 at 1:12am

Johnny,

Brew spoke the truth. We have to know what the best CH treatments are ourselves. CH is so rare that few Doctors have a clue. And when they do, they may be reading outdated info. Even so called Headache Experts.

My Neurologist, after 18 yrs of prescribing O2 correctly, wrote the script for the wrong mask, nasal canula. Of course I didn't find out until I was at the O2 supplier.

I hate to say this but Depakote is an old school med and helps few. Me included.

Don

Back to top

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!