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Topic: Neuro hunt update..I am losing it$##@@ (Read 215 times) |
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Leggs
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Neuro hunt update..I am losing it$##@@
« on: Jun 28th, 2005, 9:13pm » |
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Okay, today has been nuts, not to mention this is about the 3rd day I have had signs on my July CH on the horizon, shadows, stuffy nostril, my eye is going wacko. It's getting worse each day, and here I sit, knowing I won't have an appointment until July 12 at the earliest. I bought my journal today, to keep track of everything between now and then, and I have NO normalcy and predictability whatsover because SOMETHING ELSE BESIDES CH IS GOING ON?!?
Damn, at least with clusters, I can predict things, I can just about set the clock by them.
I am just really about to lose it right now, I want to rub my face raw right now, but my daughter is watching, and besides, THAT stuff sets off TN, or whatever the hell it is I have. I swear, I don't know if I can handle having the CH come on before I get the the neurologist, to find out what this other mess is.
About the neuro hunt, they accidentally told me the WRONG NAME, a stomach stapler, apologized profusely. Gave me the new name, but I don't feel any better about it.
I told the nurse at the referral desk at Emory, I was in a wreck in November, I have been diagnosed in the past (1986)with CH, but since I was in a car wreck I have been having different insane pain, burning like fire, numbness in neck back and my arms and legs. I said I needed someone who could deal with MANY issues, wide range of exepertise. The referring nurse said the ONLY person who would see me was the head of neurosurgery, I should call them, but I needed a referral.
My local doctor's office gave me the correct name for who I was seeing. I looked up the neuro I have an appointment with, his specialties:
headache
migraine
sleep disorders
Now, two other doctors:
acupuncture
asthma
back pain
Bell's palsy
botulinum toxin (Botox, Myobloc)
brain injury
carpal tunnel syndrome
cerebrovascular accident
dystonia
electromyography
epidural steroid injection
geriatric medicine
headache
herniated disc
knee/non-surgical tx
migraine
neck pain
neuropathic pain
osteoarthritis
pain management
post polio
sacroiliac (SI) joint dysfunction
sacroiliac (SI) joint injection
sciatica
spondylosis
stroke
trigeminal neuralgia
OR:
anxiety
arthritis
back pain
bariatrics
depression
headache
lumbar disorders
medical disorders psych
migraine
mood disorders
neck pain
neurobehavioral medicine
neuropathic pain
obesity
obsessive compulsive disorder
osteoarthritis
pain management
pelvic pain
psychotherapy
reflex sympathetic dystrophy
trigeminal neuralgia
NO ONE says clusterheadache, and someone who is just dealing with "headaches and migraines and sleep disorder" is not a good match for my issues, and ain't going to cut it!!!!! I would rather go to someone who has psychological experience so they could at least know what this kind of pain does to your mental faculties!
Hell, I just really need time travel or something, I can't be this way in front of my kids, but if they weren't around I would probably just want to kill myself. No, I don't want to kill myself, I just want to have a skullectomy, let it sit on the end table or something until this insanity is resolved. This is about as bad off mentally I have ever felt in my life...
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gMike
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Re: Neuro hunt update..I am losing it$##@@
« Reply #1 on: Jun 28th, 2005, 9:44pm » |
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You have to start somewhere. You'll never find the perfect match given your unusual circumstances. Just hope you get a Neuro that you can talk to and takes you seriously.
<Small Rant>
It always amazes me the length of time it takes to get in to see a Neupologist. Folks are suffering while they give you an appointment date a month away and act like they are doing you a favor to get you in so "quickly"
<Rant Mode Off>
In any event, I certainly hope you get a decent doc that listens!!!!!
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I used to care, but things have changed!
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Leggs
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Re: Neuro hunt update..I am losing it$##@@
« Reply #2 on: Jun 28th, 2005, 9:47pm » |
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Meanwhile, anyone want to borrow my head for about a month???? 
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bnfreeman
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Re: Neuro hunt update..I am losing it$##@@
« Reply #3 on: Jun 28th, 2005, 11:03pm » |
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Maybe you should try to see a pain specialist while waiting, if you can. If he/she can help in any way to at least ease some of your pain, then maybe you can focus and not be so crazy. I know EXACTLY how you feel. I have a toddler and my husband was in Iraq from August of 04 til March 05. I was hit the hardest from October til March. Most of the time I was a zombie. Since I couldn't take imitrex everyday all day and O2 only worked sometime I would take anything else in sight.
If you have any friends or family that can help you out,then reach out to them. I wish you the best of luck!
Brandi
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Lizzie2
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Re: Neuro hunt update..I am losing it$##@@
« Reply #4 on: Jun 29th, 2005, 12:24am » |
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Re: the specialisations...
A migraine and headache specialist is someone who specializes (or says they do) in the diagnosis and treatment of all migraine and headache disorders and related conditions. You'll probably never see cluster headache on that list - because that's a subspecialty of headache. Migraine and headache specialists even diagnose and treat trigeminal neuralgia - and they can take a look at other neurological symptoms. If they can't treat the other symptoms, then they will hopefully refer you to someone who can.
In the meantime, have you called the doc to see if he or she does work with cluster patients? That's a good step. Also, you can check this list to see if they are there: http://www.clusterheadaches.org/doctors.htm
If they're not on that particular list, it still doesn't mean that they don't treat clusters, but it means nobody on this site has recommended them.
Here's another list of physicians that have all been personally recommended by migraine and headache patients: http://headaches.about.com/od/recommendedspecialists/
And here's one more reference list for the American Council for Headache Education (ACHE):
http://www.achenet.org/physicians/
Best of luck!! Maybe you can ask them to put you on a cancellation list in order to get in sooner?
Hugz,
Carrie 
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kcopelin
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good grief
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Re: Neuro hunt update..I am losing it$##@@
« Reply #5 on: Jun 29th, 2005, 12:41am » |
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Good grief woman, sounds like your warranty has expired!  Seriously, keep at it. You can take alot of this information from this site and others in to what ever Neuro you finally get and hope that they are practicing medicine because they have a modicum of compassion.
I have a seven year old son-he has never seen me getting a full 10 hit but it really freaks him out when I hit the O2. One of the problems I have-and I bet others do too-is that we try to minimize the pain as long as we can or so avoid others when getting hit that they only see us relatively pain-free.
My cycle started in March-my Neuro appointment is Sept 12.
Good luck and PFDAN
Kathy
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Leggs
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Re: Neuro hunt update..I am losing it$##@@
« Reply #6 on: Jun 29th, 2005, 8:00am » |
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It was a relief to find the guy I have been recommended to is on one of the lists. The problem is now, I have all the extra crap going on, that really makes no sense because it is totally no cluster, CH is just the icing on the cake today, and yes it's back, my right eye is really messed up. I don't think it's really heavy duty yet.
Well, all I have to do is take some excedrin and drink a ton of water. I have to write down whether or not I take it, because I am so stupid with pain, I forget. Or maybe I could break into a gas supplyhouse and such on a jug of O2?!
I think what I am going to do is call THAT doctor, the one Ihave been referred to, and the referral desk, and ask them if they think I have a good match up. The LAST thing I want to happen is for me to get there, and have them refer me to someone else to WAIT for!
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Leggs
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Re: Neuro hunt update..I am losing it$##@@
« Reply #7 on: Jun 29th, 2005, 8:05am » |
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I do try to hide the pain, and not let the kids know about it, and probably should have seen someone else right away after the other nuero was a jerk.
NO, I have absolutley no one to help me out here. We talked the other night about how this year is the year to get the house fixed up and MOVE to where we have some support, back by the inlaws.
Yes, my warranty has expired, too much crap happening at once.
Re: the pain specialist, GREAT IDEA, wish I thought of it sooner, my pain specialist appointment is actually the day AFTER the Emory appointment. Here is what I am thinking, if I switch things around, and have to go later to Emory, I can keep that pain specialist appointment and get some RELIEF.
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Leggs
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Neuro hunt update: Appointment cancelled!!!!
« Reply #8 on: Jun 29th, 2005, 12:47pm » |
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Okay, the nurse said she had just ACCIDENTALLY TOLD ME THE WRONG NAME, That got straight, but when I called the neurologist's office today, and told them what was going on, they CANCELLED the appointment, and told me to fax all written records of my treatment so neurosurgery could determine the best doctor for me to go to...I am confident I will eventually see someone competent, but now I know I will be waiting longer, so I am seeing a pain management neurologist on the 13th
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Leggs
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Re: Neuro hunt update..I am losing it$##@@
« Reply #9 on: Jun 29th, 2005, 12:53pm » |
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I am taking Brandi's advice, and seeing a pain specialist on July 13th, since my Emory appointment was cancelled. At least something will happen soon, and I will take the advice of Nani/Noni? and try some kudzu or Melatonin for the cluster busting through at night...Thanks everyone.
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