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Topic: New to site....Questions, please?? (Read 244 times) |
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Punky
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New to site....Questions, please??
« on: Jun 6th, 2005, 11:08am » |
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Hello! I'm so glad I found all of you, but so sorry you all have to be here.
I was hoping I could get some questions answered. I have been having daily headaches (ranging from 3-6 or 7 on the KIP scale) since mid-July last year, but I'm still not convinced they are clusters. (Maybe I just don't want them to be.  ) I have already been diagnosed with Idiopathic Intracranial Hypertension since last November and have had 2 MRI's, 1 sinus CT scan, 1 MRA, 1 MRI of the Cervical Spine, 1 ultrasound of the Carotid Artery, 2 spinal taps (to relieve the fluid pressure), and I'm on my second neurologist.
A few weeks ago, I went to a Neurosurgeon to consult on a VP shunt as I'm not experiencing headache relief from the taps. He won't do the surgery yet, and he felt that I have more going on than just the IIH. Friday, my neurologist stated they feel I'm having clusters and started me on three days of 30mg of Prednisone and 50mg of Topamax.
I guess I'm wondering if it is possible to have clusters and never get up to the 10 on the KIP scale. I have nasal stuffiness on the right side, which is where my pain has always been, but my pain never seems to stop. I have a constant burning ache that increases and decreases throughout the day. I have never had a runny nose or watery eye, but the entire right side of my face swells and is tender.
I am awaiting an appointment with another neurologist who is a headache specialist that my other doctors are sending me to, but I had to send her all my medical records before she will even set me an appointment.
Has anyone else experienced what I have, or does this seem totally different than your symptoms?
Thank you all for your support, and many PFDAN coming your way!!! 
Stacy
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giffy76
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Re: New to site....Questions, please??
« Reply #1 on: Jun 6th, 2005, 12:13pm » |
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Hi Stacy, I'm sorry to here you'r going through hard times, I'm no expert but it doesn't sound like clusters to me. Read all you can on this site and I'm sure others here will help try to diagnose your ha's.
pfdn's
Ryan
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seasonalboomer
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Re: New to site....Questions, please??
« Reply #2 on: Jun 6th, 2005, 12:25pm » |
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Stacy,
Also sorry to hear you're having a bad time. Geez, the doc's have been busy on you girl.
Have you taken the Cluster Quiz on the website. It's very good at narrowing in those things that are symptomatic and those that might be something else.
I sure hope they can figure things out for you, and if its cluster, then begin to treat it as so, and if not find something to help you.
Scott
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unsolved1
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Re: New to site....Questions, please??
« Reply #3 on: Jun 6th, 2005, 12:30pm » |
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on Jun 6th, 2005, 11:08am, Punky wrote:| my pain never seems to stop. I have a constant burning ache that increases and decreases throughout the day. |
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Not clusters. Get thee to a neuro (Again)
PF Wishes
Unsolved
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Punky
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Re: New to site....Questions, please??
« Reply #4 on: Jun 6th, 2005, 3:23pm » |
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Thanks, guys! I'm hoping you're all correct, and it's not clusters! I've seen the postings that you all have made, and quite frankly it has scared the bejeesus out of me!
I'll keep you all posted once I see the headache specialist and let you all know what the final diagnosis is. I have to say the support and courage you all show is truly an inspiration. My prayers are with you all!
Stacy
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gMike
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Re: New to site....Questions, please??
« Reply #5 on: Jun 6th, 2005, 9:10pm » |
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Punky,
I was initally diagnosed with Clusters but I didn't have the extreme level of pain usually associated with clusters. I had some of the other markers (drooping eyelid, tearing) but I could lay down when I was being hit. I did a lot of study on this site and the OUCH site and "self-diagnosed" that it could be Hemicrania Continua. I talked my neurologist into trying a diagnosis of HC and she started me on Indomethacin. The result was almost like flipping a switch - pain free.
I'm in my third week of the Indomethacin trial and still pain free.
I'm not saying that you are suffering from Hemicrania Continua, but there are other types of headaches that look similar to CH.
This article may be of help:
http://www.clusterheadaches.org/library/general/ch_general.htm
Good luck,
Mike
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Jasen
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Re: New to site....Questions, please??
« Reply #6 on: Jun 7th, 2005, 11:45pm » |
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My case is somewhat like yours. The Neuro spotted something in my MRA that she suspects is Synalga (sp), which is, IIRC, some TMJ never endings in the sinus that are touching the sinus passage. I go see the ENT
(nose Dr.) this thursday for his take. If it is this, it's supposed to be a simple sugery to fix.
Hope you get it figured out soon.
Better days
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If it was clusters of cash, I wouldn't complain
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