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...

Personally, I'd consider it a win if you got in to see a specialist (who's never seen you before) within 6 weeks.

I've never heard of treating CH with vitamin B3. Now D3, that's another story.

If I were you I'd get me some energy drinks, a big ol' bottle of O2 from a welding shop, a regulator and a non-rebreather mask. For cycles that last 2-3 weeks, you can gut it out. That period of time is actually quite fortunate compared to most around here.

And go read the following thread in its entirety:

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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.

I'd still recommend seeing the specialist, even if your cycle is ending. He may be able to set you up with a better preventative regimen that you will have quick access to the next time your cycle starts.

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?

Welding oxygen is every bit as pure as medical oxygen as otherwise welds would fail. Lots of people here use it for killing their CHs.


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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?

Hard to give accurate numbers, but there are people who come here and find out that they've something else, often another headache type but rarely something more serious. So it's well worth getting things checked out just in case.

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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?

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

I just saw my first headache specialist last week. My GP referred me to a specialist about two weeks ago. After entering my sixth month of getting hit off and on, I had finally agreed to go see him. The hits had slowly ramped up. I was going through periods of night hits that woke me up and daily lighter hits that seemed to be fairly persistent. I called the specialist's office to schedule an appointment when I was in the middle of one of the more painful "light" hits. They scheduled me for the next day.

I've been diagnosed with CH and paroxysmal hemicrania. They had me take indomethacin for 5 days to see if I responded to it. I do. The daily persistent pain has been reduced both in number of episodes and in intensity. My wife says it's the shiniest she's seen me in a long time.

In answer to your question, I was diagnosed with something different than I expected. I was reluctant to go see him, as I have become used to knowing more about CH than a GP. I'm glad I went to the specialist and am grateful that I could get in as quickly as I did.

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.

CH isn't a walk in the park for episodic or chronic forms. Each is different and interestingly people with each form seem to think that theirs is easier than the other. And having had an 11 month episode plus a much shorter one I kind of agree. When CHs come all the time you're much better prepared for just another CH, unlike episodic but at least you get a pain free period.

All that matters really is how it impacts you and how you make the best of it, especially in living between the hits.

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!

I definitely feel fortunate to live in Japan where seeing a specialist is actually rather easy (no appointment, I just walked in and was set up with pred, immigran shots, and a calcium blocker). Nice to live in a place with a functional national health care system.

Still, it took 3 weeks to get D3 ordered from the states since they don't sell it over the counter in the right form and concentration over here. I'm definitely stocking up this coming trip back home.