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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> What? A Doctor who listens???
        
(Message started by: Leggs on Jul 25^th, 2005, 9:47pm)

Title: What? A Doctor who listens???
Post by Leggs on Jul 25^th, 2005, 9:47pm

I finally got my appointment with the pain specialist, just south of Atlanta, and at this point, I am just saying s$#@w neurologists.

Anyone who has been reading about what has been going on with me since my first February cluster (the other starts in July), knows a couple things about me, I have been using kudzu about a month, and I have been trying to find out what the mystery face and neck pain was having along with my clusters. Fun, eh? I also was in a car accident in November, and since then, my clusters changed.

Point one in his favor, I told him I had clusterheadaches and to not think I was a fruitcake, but I read on the internet to take kudzu. He said he never argued with success, and gave me absolutely NO lectures.

Next, when I told him I had these clusters for YEARS and knew what was cluster related and what was new, HE LISTENED. The neuro here, put his hand up and said "I don't want to hear about that, tell me what is happening NOW."

That neuro in my town, said it was trigeminal neuraligia, but I can't see it being that. The ONE sided nature of the headache is due to clusters, but I have other head face pain going on at the same time. It's like my head has cluster worn spots in it, and when my neck is really sore this other pain gets one sided, but it's not a cluster.

My clusters are well defined, the teary eye, the stuffed nose, the unable to lie down, crazy feeling. I told the guy HERE, the neuro, my face was numb from clusters and scarring, he writes, and I SAW it in the records I requested, that I had TN because one side of my face was numb.

This new doctor asked me several other questions that pin point trigeminal neuralgia, which I answered in the negative, and said he did not understand why I would be told I had trigeminal neuralgia.

So right now, I am holding the clusters at bay with kudzu, have a doctor who supports me in that, and one who is addressing the neck problems. I feel confident if my headaches ever rear their ugly head, he will work with me because he listens.

Title: Re: What? A Doctor who listens???
Post by nani on Jul 25^th, 2005, 10:17pm

That's great news, T! He sounds like a keeper. :)

Title: Re: What? A Doctor who listens???
Post by Topical on Jul 26^th, 2005, 4:21am

I hope things work out now with the new guy.

Your face literally get numb Leggs?
Is the face pain in the same area as the numbness?
Did the accident leave you with some scarring and that is also where this numbness/pain is?

I'm curious as that isn't a typical symptom but a few CH'ers have reported it before.

Take care and stay positive.

Title: Re: What? A Doctor who listens???
Post by don on Jul 26^th, 2005, 7:10am

How about posting his name so other sufferers in your area will know.

Title: Re: What? A Doctor who listens???
Post by burnt-toast on Jul 26^th, 2005, 7:36am

That's great news on the Doc. find. That's all we can ask for - a Doc. who will listen and work with us to help us find relief. I've been through it a few times myself and it's not easy.

Tom

Title: Re: What? A Doctor who listens???
Post by vig on Jul 26^th, 2005, 9:21am

there are some excellent doctors out there!

Title: Re: What? A Doctor who listens???
Post by Leggs on Jul 26^th, 2005, 12:46pm

Okay Topical, here's the deal. I had a near fatal car wreck in 1982. I had headaches ever since. The problem is, the distinct CH stuff was always muddied by the fact they said I had post trauma migraines AND clusters.

After I had my hysterectomy in 2004, my CH became very distinct, since I NEVER had migraines anymore. They went away with my hormones. My CH became EXACTLY like the survey, none of the extra stuff like sensitvity to light, etc.

I became very distinctly episodic, February and July for two weeks. It was just about as predictable as my migraines that used to come monthly, but now, it was just one thing to worry about at a time.

Yes, my face does literally get numb, but, like you say, that's not a typical CH thing. I have scarring from the major car wreck in 1982, which may be why it feels numb, but also, I had shingles on that same side of my face two years ago, and the "new" non CH type pain feels very much like that.

It's like that side of my face is just susceptible to any issue I have. I don't understand why, but THAT is where the CH is, that is where the scarring is, that is where the numbness is, that is where the I had a hematoma in my eye from the major car wreck. They said I had post trauma MIGRAINES, but how does the CH figure into all that? It's very interesting to read all the stuff on this site about the action on which nerves, etc, with respect to CH. I think some how, all of this ties together... CH sufferers, once we are finally diagnosed, really seem to knowa lot about what works for them, and what causes this hell. It seems Doctors just know what is in a book, instead of what works in practice. It really made me feel so relieved that he did not balk at me using kudzu!!!

It was a great relief to me, I actually cried, and told him "I just feel so relieved you are listening to me, and taking into account the things I KNOW about my condtion I have lived with for so long, and addressing the things that I know have CHANGED that did not exist before." Then he gets me a kleenex and gives me a hug.

One thing that I WAS wary about when I first went to him, is how he is an anesthesiologist, not a neurologist. After having dealt with him in person, I have a more positive outlook on the situation. It just seems like he looks at things in a different way than a neurologist, or at least the ones I have been to. He's looking at the pain, and the mechanism of the pain, and trys to target the relief/anniulation of it, where all the neuros [I have been to], are searching for a "condition," and then look in a book for what the drug of the day is.

Also, unlike any neuro I have been to, he had a pretty extensive evaluation of my past, my triggers, what worked, what did not work, what helped what hurt, etc.

I will gladly recommend him. Dr. Berinhout, Pain Management Specialists of Atlanta Stockbridge, GA.

Title: Re: What? A Doctor who listens???
Post by hdido on Jul 26^th, 2005, 1:13pm

Rochester General Hospital Pain Clinic. They will work with you. Have your doc contact them for a referral.

Title: Re: What? A Doctor who listens???
Post by Kris_in_SJ on Jul 26^th, 2005, 8:22pm

I'm so happy you've found someone to listen and work WITH you.

I remember being told during my second classic cycle that I had "Premenopausal Cluster Migraines". Only to find out through my own research that no such thing existed!

Stick with him. Any doc who hugs you can't be all bad (as long as it's not groping, of course). Just kidding. Sounds like a keeper.

PF Wishes and Many Hugs,

Kris

Title: Re: What? A Doctor who listens???
Post by Leggs on Jul 26^th, 2005, 11:09pm

on 07/26/05 at 13:13:32, hdido wrote:

Dr. Gilbert Proper, anesthesiologist, Pain Clinic, Rochester General Hospital, Rochester, NY; Michael Kuttner, PhD., psychologist specializing in chronic pain patients, also of the Pain Clinic and Dr. Harold Lesser, neurologist, same hospital. They worked WITH me for 6 years, gave me TOTAL support and saved my life because of how suicidal I would get when the pain got really bad; still keep in touch even though I've been gone for almost 4 years.

This is a great variety of people working together, and that is the key....not getting big headed about being "in control", and number ONE, give the patient credit for their experiences. A GREAT sign of a doctor to me, is when they see something out of their range of expertise, and refer to get more appropriate treatment, and one who welcomes a second opinion.

Glad you had such a relationship with your physicians, it literally WAS a lifesaver. I have only had the kip 10s a handful of times, and I am not so strung out for days, but I do think about killing myself, but am still somewhat coherent to be able to know it's the clusters talking.

I was SO exasperated at the response to my complaints from doctors and nurses about the pain. I wanted to do a Network moment, "I am mad as hell and I am not going to take it anymore." Forget suicide, let me wack somebody!!!

I am thinking I am finally off in the right direction!!!

Thanks all you Clusterheads, your support means the world to me... [[[[[Clusterheads]]]]]

Title: Re: What? A Doctor who listens???
Post by Leggs on Jul 26^th, 2005, 11:19pm

on 07/26/05 at 20:22:06, Kris_in_SJ wrote:

Geeze, what a crock, making up a syndrome. I had terrible clusters when they put me on hormones. It happened during my usual July cycle, but heightened all the way up to kip10, which I had not seen in years. That was 2002, and the BEST thing about it was, I found this group!!!

The doc was fine about it, I told him all things remaining constant, the hormones were the only thing that changed to make me have the terrible clusters. We tried a patch, and I said it was just not worth it.

Kris, I gotta tell you I can really feel for what you were going through with the imaginary syndrome line you were handed. It really steamed me the FIRST appointment I had to discuss the hormones not working, the nurse says to me "Well, you know having your hair pulled up tight in bun like that can give you headaches," or the famous, "Well, the SHORTAGE of estrogen is probably what is giving you the headache." NOT, I KNEW hormones triggered clusters, GIVE ME SOME CREDIT!!!!! I was near ASSAULTING someone, when they saw how my blood pressure was up, asking me if I maybe should go on BP meds again...The BLOODY HEADACHE MAKES MY BLOOD PRESSURE GO UP!!!!

;;D Thanks for the mini rant moment there....I guess it just kind of built up with the putzes (does anyone know how to spell putz/putts) I have been dealing with for the past 8 months. Hey, let's call a spade a spade, the a$$holes!!! <<<Thanks to the hall of famer who showed me how to get around having my a$$hole turned into a "not a very nice guy." [smiley=laugh.gif]

Title: Re: What? A Doctor who listens???
Post by hdido on Jul 27^th, 2005, 12:44pm

Thanks Kris and Leggs.

Title: Re: What? A Doctor who listens???
Post by Topical on Jul 29^th, 2005, 6:49am

I'm so glad things are going well for you Leggs.

Thanks for explaining your condition in such detail. I worried for you as it may have been a sign of something more serious. (At least it looked that way.) The doctor sounds great and you pulled a 180 from the other bad ones you were first seeing. That's so important to find that doctor that can work with you. A doctor that cares. :)

Take care, I am sending some big hugs over the net to you.