;)

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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

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.

This Topic was moved here from Funnies and Jokes by George.

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.
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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

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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

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 :)

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

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 :)

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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.

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 ;)

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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