Before I get to what I think is weird I want to explain my last 4 weeks of hell as quick as possible.  Chronic, high cycle.  Fired my neurologist who was supposed to be finding me a h/a specialist so he could refer me.  HE wasn't and he was a jerk.  HE kept sending me to ER.  For almost 4 weeks now I have this new constant crushing pain on my cluster side (which is also my migraine side)  The crushing pain is almost always at a high pain level (worse than a migraine, not as bad as a cluster but close) but it lets up sometimes.  But has NOT ONCE gone away at all for all this time. 

The neuro had no ideas for aborts (those that know me here may rememeber that I'm mrs. med resistant and I've tried and failed all the aborts) but he would not give me ANYTHING to help me.  I was even begging and crying at week 3 to be admitted in the hospital for pain control. 

It's hard being the new gal in town and finding a decent doc but he is literally the ONLY neuro in the area.  So I went to my new family doc and he orderded an MRI and blood work got it the next day.  He got me some pain meds that really barely touch the pain (I should've known that)  And he is now trying to get me into a good h/a doc that in one of the nearby cities.

I have been having other symptoms like slurring off and on and trouble walking off and on and going cross eyed and having trouble keeping my eyes open even when I can't sleep.  We are chalking that up to meds.  But  that's not my weird question

Now here's the weird thing that just happened.   
My crushing pain was at a 6 or so then all of a sudden it sounded like a balloon popped inside the top half of my head (it did not sound in my ears at all) and my pain increased with it.

Anyone ever had that balloon popping sound thing happen?  What do you all think?

(this took great concentration and effort to type, that's why I don't post helpful stuff too awful much because between my head and my meds I am just coming across just plain stupid and I read so many posts that I feel I can contribute to but I know my answers most likely aren't going to come out to helpful! it really makes me so mad/sad)

Yeah I alread called the family doc but the earliest appt he has is the 14.  But they told me to call everyday to see if any openings pop up.  I would search (and kinda have been looking a bit) myself but I need a referal because of NC medicaid.  My medicare doesn't care what doc I chose, but I recently was approved for the medicaid for 6 months and I need it.  I now have doc co-pays that are only $3!

I have always had the prob with aborts so that part isn't new.  As for your bad/weird probs have you told your doc about everything?  I'm glad you like your doc that's very important! Good luck to you I hope your head settles downs soon (and mine too!)

Yeah the fam doc said he is trying to get me into a specialist fast and he ordered the mri and me records so I have everything all set and ready for when I get my appt.

As for migraine with Cluster it bites the big one!  Yah can't sit still but you wanna lay down..  Such a connundrum (i know i spelled that wrong!)

And yeah this is what high cycle is about (not the migraine part though).  You have the steroid taper option.  Sometimes it helps give a break or work while the prevent is working in.  Sometimes it helps me (I've had it 3 times IV and one taper with no luck this time)

I get your frustration .... that word doesn't even describe the feeling.  Well I'm off to bug the docs office again to see if they have any openings.

Firstly Mistina I'm so sorry to hear about your condition I hope and pray you don't lose your eyesight from it.  How horribly scary for you, my heart goes out to you.

I called my family doc and he has no appts. until the 14th.  On the 4th of July I spent most of the day in my house.  I came out and sat around the fire for the fire works and Sam had to help me back into the house cause I could barely walk.  I also was slurring my words so badly that I was barely understandable.  That was all without taking any meds (I was prescribed Diluadid and Valium) other than my morning 25mg of Savella and 100 mg of Topamax at night (which I hadn't taken yet and I have been on topa for years now without these probs).  I hadn't drank a drop either.  I kept telling everyone I wasnn't on drugs cause that's how I came across, I was an embarrassment to my family and myself.  although everyone here sincerely understood I have 'really bad' headaches.  It was just scary.

I am now weaning myself off the Savella to see if that is the prob since getting into the specialist is taking so long.  I'm just getting scared a little.

I'm sure plenty of you know the nickname for Topamax...and Neurontin. Dopamax, and Morontin. They can definately cloud your mind. Even if the Topamax had been in your system for years, adding something else might just be enough to tip it to the side of making you goofy.

I've been on most of my medications for years, it doesn't stop new ones from making me goofy when added. I have to move the times I take them around sometimes, and have found some relief from the goofy symptoms through that... Usually though after a few weeks it wears off. Usually.

monty wrote on Jul 9^th, 2009 at 4:31pm:


After 250 of them, I know how much it'll make me feel better... It's just a pain in the ass to be out of remission again. I can't find words anymore... I can't have normal conversations. I never thought I'd wish I had CH instead of something else that also wasn't life threatening... or incurable..but I do.

I really enjoyed being able to live WITHOUT a needle being shoved into my spine every week to 3 months. That and there's been no progress for the most part in the treatments. Not for the past 14 years...

At least with CH, I can see SO much hope for us. So much that can be researched and worked on. If I ever stop being chronic, I'll know that if it comes back, there'll be some progress for us. Eventually a cure.

Enough of my rambling. Also, Tara Ann? If that's your first and middle name, you have the same one as my aunt. XD