Sorry if I get on a rant with this, but I'm pretty bugged...

I have been getting ch's for the past 7 years, and only been recently diagnosed with them. Up till now the gp has thought them to be migranes, but I finally convinced her to check into ch and she is in agreement.  She decided to refer me to a neuro specializing in headaches, and said that she did not want to try anything new until I saw one.

I am 2 weeks into a normally 2-3 week cluster bout and I am awaiting a call from the neuro to get me in.  She referred me on last monday the 26th. They had to wait for the blood tests to come back on wed. before making the appt.  I called on the 28th and they were checking with the dr to see if they could expedite an appt.  the scheduler told my wife that she also suffered from ch so she could relate and try and get me in ASAP.

Now I know that they have other patients that may have a greater need to be seen as ch's are not life threatening, and don't cause permanent damage, but due to the pain level experienced, I would think that someone with experience with them would understand the need to get a patient in right away.

I have been on the list of medications that most of you have, and none have worked for any period of time.  Most recently, the gp prescribed Percocet to get me thru the nights until I can get an appt.  I hate taking such a powerful addictive drug, and have only used one pill one night.

Luckily, I have been taking b3 and have had 2 pfdn's, and the cycle might be over, but the dr does not know that.  I have not heard a word from them since Wed.

Did anyone else have a hard time getting in to see a specialist quickly?

Did your gp write the script for the o2 & other preventative/abortive meds?

Hopefully the cycle is over, but I have the fear of a k10 looming and nothing to help other than a narcotic.  Maybe the B3 is what is working, but if not, I am screwed.

My wife can't believe I actually though I would get in quickly, but I would think that with the pain level involved, and patient quality of life/comfort in mind, I would be seen quickly, even if they just call in a rx for the meds needed until I can get in.

Thanks for listening and any input you may have, I am just getting frustrated...

Bill is correct in everything he has just told you.  A 2 to 3 week cycle...?  Well that would look like heaven to so many here.  Yep, you can gut it it out.  Just get the welders 02, get it filled and then put it away til your next cycle.

Don't get me wrong, I know I am VERY fortunate to have short cycles.  I have been reading a lot around here, and I have great respect and sympathy for those that have it worse..  I can only imagine long cluster groups or, god forbid, chronic ch.

It is D3, for some reason my mind was stuck on the b3....  I have read Batches' posts on the d3 regiment, and am considering trying it.  I wonder how many sufferers vit b levels are low? I believe mine was an 18 recently. 

I am ordering the mask & regulator, I have some hesitation with the welder grade o2, but I understand it works for many.

I am also fortunate to have found this site, it's information, and all of the great people here.  Without it, I would still be stumbling around trying to figure what the hell is wrong with me and how to properly treat it.

Now I can understand more on how people go so long without a diagnosis, or be improperly diagnosed...  But really a few questions by the doc at the first appointment could get many of us relief in days, not years..  While it is important to rule out other underlying factors, really a neurologist isn't necessary...

If from the first appointment, you can answer 10 questions about the pain/symptoms, it should be easy to narrow things down, or if not, then maybe a specialist is required.

How many of you that have seen a headache "specialist", have been told something different from what you could find here, or that a gp could not prescribe?

Quote:


If I understand what you're asking, the answer is "not often." By that I mean doctors who are not familiar with CHs tend to prescribe according to old information, treating CHs like migraines, and offering fairly useless drugs in the process. Occasionally something new and useful will come along but the strength of this board is the sharing of common experience concerning what interventions work and those that do not. Unless the doc is willing to come here for a peek at an ongoing longitudinal study of effectiveness, and most aren't, they have only mostly old data. Is that what you were asking? blessings. lance

brnbldr,

Although I don't agree with the other posters about episodics being a walk in the park...."suck it up mentality", I'm glad you're venting! I'm on my 3rd week in and look like I've been hit by a truck...It's no fun for anyone who suffers with this. Get on that prednisone and develope your love/hate realationship with that. Triptans are great, but I can't take them because I take Paxil and risk serotonin syndrome because I use it so much. This Christmas just stinks seven ways to Sunday. Sorry for my vent but the 60mg of pred daily makes me irritated.

Like the title states, I'm just venting my frustrations.  I am sure what I am going thru now is what many, if not most of you, have already. It's frustrating that even with a diagnosis, I had to wait to get the treatment that works.  It's frustrating that it has been 7 years, and only now is this being talked about.  It's very frustrating that I have to wait until Jan. 2nd to see the neuro.  I thank God that my cluster is over, and I don't have to endure the pain until then, but as I stated before, the neuro does not know that.  I could be chronic, and be being treated with opiates for over a month before they can "squeeze" me in.

I have great respect for those that have worse cases than mine. I can only imagine what it would be like to live with the headaches for months or years.

This is the second "rare" disease I have been diagnosed with since I was 14, and luckily there is a treatment for this one, but with both I have felt like a guinea pig for trial and error.

Jeffire & Kimmie, have you tried the o2?  There wasn't any mention of it in your posts is why I am asking. 99% of the posts I see mention it being a lifesaver, and what has your specialists said about using it? I am just trying to learn as much as I can, so when I finally see one, I can tell if they know their stuff, or if I get to be a guinea pig again.

Thanks again for the replies, and feel free to vent here anytime!