recently diagnosed But long long time sufferer

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New Member

Date Joined Dec 2010
Total Posts : 6
   Posted 12/30/2010 4:54 PM (GMT -6)   
I've been having headaches since i was a teenager they never got really bad until my last pregnancy 3 yrs ago i had preclampsia and gestational diabetes so i was under alot of care and in and out of hospital daily for raglen for headaches they also gave me floricet but nothing helped i thought after giving birth they would go away they didnt, after giving birth they left the epidural needed not hooked up in my back for about 16 hours, i couldnt lay down or anything it was horrible) then about 3 months after giving birth i would wake in the night with bad back pains which ended up being my gall bladder i dealt with that pain for a yr after doctors failed to diagnose it and i went septic so i thought my headaches were realated to all of this ( that is why i threw it int)
I also had neck pain so i got a neck mri showed arthritis and a disc bulge so doctors related that to headaches went to pt after weeks of pt and no relief i stopped doctors said sounded like cluster tension migraine headaches  nothing more  gave me fliornial and it worked great but he took me right off because he didnt want me on meds at all he said ( why put me on them to begin with then ?)
So i went to a chiro  she looked at me and saw my right temple and eye so swollen out she immediatly reffered me to a neurologist while i was in the office, i went to her she said they didnt seem like cluster headache even though i told her about the swollen temple swollen eye and runny nose and watery eye. She sent me for a mri /mra of brain both came back fine put me on topiramate.
Stated on 25mg at night then 25 at night and 25 in morning now on 50 at nihgt and 25 in morning.
She is convinced they are migraines here are my symptoms
daily i mean daily headaches some days are way worse then others light and sounds are not bothesome though
eye and temple and nose all on right side runs
hurts more to lay down
Buzz in head like one long continuious buzz
cant sleep either falling or staying asleep
sometimes feels like i got hit with a bat to the side of my head
no aura no tenderness
I do need to metion as a kid i head a lymph node removed on right side and also muscle or tissue removed from right temple and placed over right eardrum do symptoms sound famiar?
Thanks i know long and all over the place sorry
I called office 3 time over last 2 days and no call back felt like slamming head into wall or going to er jsut to get relief this is sooo horrible

Regular Member

Date Joined Jan 2010
Total Posts : 197
   Posted 12/30/2010 6:53 PM (GMT -6)   
Hi Kikko,

So sorry you are dealing with this. I noticed your post on deltaforce's thread about your topamax so I thought I'd come over to your own thread to comment on it. Since no one here is a doctor, nothing we offer will be any more than opinion based on personal migraine knowledge. To me, the fact that light and sound is not at all bothersome to you is important. Also, it seems strange to me that you have the visible swelling in your eye and temple- I have never read about visible swelling with migraines, but I can't claim to have read everything either. Hurting more to lay down also doesn't seem to go with migraine. It isn't unusual to have difficulty sleeping when you are in extreme pain, no matter what kind of headache you have. The swelling, tearing, runny nose, pain that becomes worse when you lie down are cluster headache symptoms, not migraine symptoms.

Is the neurologist you were referred to one who specializes in headache treatment? That can be important. The way you were prescribed topamax is the typical way it is started for headache treatment. The tingling sensations are a normal side effect. Not sure about the cold, I am always cold to start with, even before the topamax so I can't say on that one. Topamax is also prescribed as a preventive treatment for cluster headaches. Since you are only on your 3rd week, it may not be enough time or you may not have reached the dose that is helpful to you yet if it is going to work for you. It is typical for the symptoms to increase for a bit when your dose goes up as well. I would say try to ride it out and give it a bit longer to see if it will help. It can take a few months for the full effects to be reached. . I do understand what it is like to live with daily headache pain and to just want relief. I hope that this, or something else ultimately works for you. Or that they will give you back the medication that you already know did work for you. :)
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin
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