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        Supporter's Corner >> Supporter's Corner >> true or false, is the doc a quack?
        
(Message started by: Dr2Ford on May 20^th, 2003, 10:59am)

Title: true or false, is the doc a quack?
Post by Dr2Ford on May 20^th, 2003, 10:59am

Hi folks,

I found this site er rather my mom sent me the link to it and I've some questions that I'd appreciate some in sights on. Forgive me if this is in the wrong section. I'm 27 and had migrains years ago when I was very young and they all tappered off then over the last couple of years I've been getting violent head aches that I thought were just stress or something. Well after lossing a fight with my wife she finally dragged me to the doctor where this guy says I'm suffering from these cluster headaches. Well that's all fine and dandy but my problem is I'm not real sure that it actually is. All the research that I've done only fits half of my problems and I'm curious, for example: Everyone seems to have attacks at night, thus far I cain't recall ever having one at night, and folks seem to agree that the pain is always only on one side of the head, mine tends to jump from one side to the other at various times. I'm not sure what triggers things, though I know aggravtion, frustration, and anger really sends it off badly. I also noticed that folks during an attack can't sit still. I've only mildly had that problem, though usually I like to bury my head in something and just die. I've also never noticed either of my eyes tearing during one of the stabbing pains, and quiet honestly I'm not real sure I was able to describe the pain to the doc properly. I'm not sure I understand it from what I've read either.

For instance, this 'attack' started Thursday with what I thought was a migrain, lasted til Friday at that level of pain without the shooting pains, then Saturday morning the shooting pains started and have been jumping back and forth on my head til now, which is Tuesday. The best example I can give is like my head is burnt out coals that are just embers, and when I have a shooting pain it's like someone throwing gas on those coals and it flares into flame, then it ease's back down to the coals and there's only a little flame. Does that make any sense? It seems to me from what I gather with cluster headaches that the onset of the sharp pain is instant and fades quickly, and that's that. There's not any dull ache left over? I'm just bout to lose my self control with this though, feel very anxious like I need to do something.

I'd appreciate any input any of ya folks could give.

Title: Re: true or false, is the doc a quack?
Post by Margi on May 20^th, 2003, 11:34am

Hi there, I'm going to copy and paste your post up into the General section - you'll get a bigger response there.

What you've said here doesn't really fit the norm for clusters, especially if an individual attack started on Thursday and didn't stop until Friday.

Has your doc given you any meds? (Hope you don't mind me moving this post.)

Title: Re: true or false, is the doc a quack?
Post by Elaine on May 20^th, 2003, 2:58pm

Hi,
I am impressed to see you taking charge of your health not leaving it to the Doctors alone. I do understand wanting to know for sure what it is you have. I am not a doctor but I do have clusters and this is my opinion.
I see serveral things in your post that don't go along with clusters. I personally think some doctors have no idea what a cluster is, they are grabbing at straws. I think there are many people who have been thrown into cluster world who have other types of headaces, because a doctor told them they had them. This scares me for several reasons. Headaches can be a a sign of other problems. All headaches are not treated the same. Clusters and Migraines do share some of the same meds. If I wasn't sure I would research as many different headache sites as I could and maybe even post asking for answers on several. Most of us only have Clusters, for information on other headaches I would say check around. There are several sites on the net.

I wish you luck and hope I am right ! I sure as hell hope it is not clusters you have. If it is clusters then welcome to our world, we will all try to help you as best we can.

Title: Re: true or false, is the doc a quack?
Post by Mack on May 20^th, 2003, 3:18pm

Dr2Ford,

Sorry to here about your pain, but you've come to the right place. Can't answer about your doc. But many people here may relate to what you're going through. The truth is this syndrome affects people differently. I started an episode of clusters 4 weeks ago that had me second guessing myself and my doctor. I had the burning coal feeling behind my right eye and it got to where ANY movement seemed to make it worse. Sitting still was not a problem, so I started to wonder if it was a cluster.
My point is that cluster or not, see a doctor. Try the meds. If that doesn't work, see another doctor, get an
MRI, CTscan or anything else to figure out what's causing the pain. Noone should have to endure this. And you don't have to do it alone.

As the saying goes: "Sorry you're here; Glad you found us."

Mack

Title: Re: true or false, is the doc a quack?
Post by CJohnson on May 21^st, 2003, 11:05am

My headaches come on quick, but the pain remains excruciating for around 1 hour if I don't take abortive measures. It sound like your pain "flares" for a much shorter duration. Have you investgated Trigeminal neuralgia?

Trigeminal neuralgia is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. A less common form of the disorder called "Atypical Trigeminal Neuralgia" may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs. Both forms of the disorder most often affect one side of the face, but some patients experience pain at different times on both sides.

PFDANs
-Curtis

Title: Re: true or false, is the doc a quack?
Post by svelletta on Jul 9^th, 2003, 1:53pm

My huband, like you,does not exhibit the classic symptoms, tearing of eye, runney nose, pain only on one side, but has been diagnosed with CH. It can be a long painful road, but there is help and hope out there. As per the above suggestions, if at all possible have all the test MRI, MRA, CT, etc. to rule out any other problems. See a neurologist who is well versed in Cluster Headaches. Go to OUCH.com, there is an area that list physcians recommened by patients. Good luck to ya, and don't give up. I am somewhat new to this site, but it is a wealth of information.

Title: Re: true or false, is the doc a quack?
Post by cathy on Jul 10^th, 2003, 1:52pm

Hi Dr2Ford and Svelleta...sorry both of you have had to find us in the first place....I would suggest you get a confirmed diagnosis have either of you done the clusterquiz....try the quiz and see how you get on, then perhaps you could think about printing as much of the info off and reading it or taking it to your doctor. I hope it isn't Clusterheadaches, but you need to be 100% sure before you try to find out which meds or treatment are best for you.

Welcome again, let us know how you get on.

Cathy :)

Title: Re: true or false, is the doc a quack?
Post by austicrich on Aug 27^th, 2003, 8:04am

I to wonder about 'doctors' ??? After i was discovered to be Autistic many years ago and before it was discovered I had figured out the autism process I had the "joy" of meeting all kinds of doctors in the Autism Field.

Once they discovered that I lived a normal live and did normal things ,like all of the previous undiagnosed people of the world I was dropped like a hot potato.

Anyway one 'doctor' was on the verge of a BIG discovery in Autism and was sure it was a cure, It seems Dr X loves /wants to be famous. I learned years later he jumped from MS to Downs Syndrome to cerbial palsey camps and never left during a telethon , when ever he sees a better profile resarching something else.

In fact among my friends we have traced his movements all over the research spectrum, sadily he has a number of people chasing him; that begs the question are they for real or is there a Porchse payment due?

Consider your self lucky that Clusterheads have never been in a movie? like Rain Man was to autism. Rain Man in reality was two steps backwards and one forward. It attracted all kinds of questionable experts and developd nasty streotypes of Autistic people that will haut us forever. Even Mainstream TV does sterotypical Autistic people today.

Unless they have been there and done that or lived with the condition they are 'diagnosing' I think even the BEST doctors are guessing. Please don't forget that even the lowest person in the ranks of the medical school class is also entitled to be called Doctor.

I love the idea of second oponions,,,, good luck in all of your Quest! rich