Um...more information would be appreciated, even though I realize you are a point where you obviously need to vent.

Not all doctors are idiots. Just too many to be ignored. 


I'm not Dr. Phil, but I AM listening.

Linda

O.k. I bit, (ha-ha-ha right back to you) but why were they doing the spinal tap in the 1st. place?   That was why I asked.   Usually a Neuro who knows his stuff might ask for a MRI or CAT scan to rule out more sinister conditions but a spinal tap?   For CH?   Hope to hear back from you.

Linda

Linda, if there's any indication that there is a lesion on an MRI or CT, or if you have unusual blood test results for various hormone levels they will do a spinal to check for further issues.  They also do them when CH is refractory/intractable to check the CSF (cerebrospinal fluid) pressure, as a CSF headache can mimic CH very closely.

Somehow I'm not surprised that it took that many attempts, when I got an epidural during child labor with my first child, it took them 3 tries before they got it right.  They had to have the anesthesiologist who was doing it, sign it over, then my doc, also an anesthesiologist, came in and was able to get it done right.

Never felt a thing after that.  When they checked my CSF pressures though, the neuro that did it was very good and she had it done first time, and was done quickly.  Unfortunately, I had a high pressure, and suffered a terrible terrible CSF pressure headache for a week after. 

Sorry to hear you are going through such a rough time Melby.  I can relate to the reject bin though, I just tell everyone that I need chlorine in the gene pool

Cat

We are absolutely so much more than our headaches.  Personally, my name is Cat, I have cluster headaches, I'm not a cluster headache sufferer, and my name is Cat.  Order of importance there.

As for the recycle bin, unfortunately, in my personal situation, I have to hold fast to that one - there is definitely a need for chlorine in my gene pool, but I do not suffer from only CH - I'm a secondary CHer, with a definitive glow in the dark spot that I can point to, and that changes my situation completely from 98% of every other CH sufferer.  Sadly, there are very few who fall into this category of CH, and because those cases tend to become refractory/intractable, the course of treatments often ends up with doctors giving up and going to a pain management option.  The danger in doing so, with secondary sufferers, is that often times (and I'm currently in a battle with my doc over this one, as I threw the BS flag when he told me....watch this spot for developing information hehe) using opioid treatment for a secondary case of CH, consigns the individual to a lifetime of prescriptions. 

Please don't shoot the messenger, there was a study published on this, and I was told about it from Dr. Finkel;  When he told me this rather disturbing news, I threw the BS flag.  I told him that was BS, and that they'd better find a different answer.  Unfortunately, (and fortunately) the patient base for this particular scenario is very small.  So no one wants to do much in the way of research on it.  It just rubs me very much the wrong way to know that ANY patient given a dx of CH, primary or secondary, should be given a life sentence in the narcotics arena.  That to me is BS.  So, I've begun the battle with the docs to have that information re-evaluated and overturned.  While the patient base IS very small, it's still way to high for a person to be consigned to a lifetime of opioids, and as long as I can fight that battle, I will.

Errr, a bit off topic there, but in my situation, I have more than just a dodgy hypothalamus, I also get to enjoy a lovely 8mm glow in the dark spot on the pituitary gland as well as a high CSF pressure.  Oh the joy of needing chlorine for my gene pool hehe.

Cat

And ladies, please don't get me wrong - I absolutely am joking when I talk about being made of reject-bin parts. I tell my GP often that he should just give me a brain transplant. I have epilepsy and Generalised Anxiety Disorder as well, so things are just nutty in my head. It doesn't get me down. Well, maybe every now and then, but I spring back pretty quickly. Maybe that's because my anti-anxiety meds, which are actually also prescribed for depression, are doing their job. Or maybe it's just because I really do see myself as more than just my medical conditions. And I'm the kind of person that can laugh at myself.

Charlie wrote on Feb 14^th, 2011 at 8:42pm:


What kinda BS talk is that Charlie??  You and your support and Dr. Wright's circulatory method are a valuable member of the family here.  Don't ever say that again. 

Cat

Melby29 wrote on Feb 15^th, 2011 at 6:35pm:


Just so I can say "feeesh and cheeeps" instead of "fush and chups"? Or "seex" instead of "six"?

Talking of stuff from over the ditch, I was walking past the Beehive (NZ parliment) this morning when I saw the red carpet being rolled out and the air force band getting ready as Julia Gillard (Aussie PM) was in town. Then later I saw her motorcade drive past at speed with multiple police outriders and escort cars.

All the flags around were at half mast, although this was due to NZ losing a soldier in Afghanistan overnight.