Hi everyone! Just wanted to introduce myself & tell my story. I'm a 47 y/o female from NC who has chronic CH. Here's my CH MO: Starts between 2 a.m. - 4 a.m., usually on left side (but goes right once in a while just to mess with me), excruciating eye pain (remove the contacts quickly), excessive tearing and nose running, excessive eye swelling (even my top lip at times), teeth hurt, face tingles/gets numb, cannot lay down AT ALL, pain on the whole side of head down into neck. No swearing or cursing, but I have cried on more than one occasion. I think the highest I've ever got is an 8 maybe a 9(?) on the pain scale. It usually lasts for up to an hour, but occasionally longer. It is usually completely over, shadows and all, within 24 hrs. I have never been episodic. Once IT got me, IT decided to move in and set up camp.
My first CH was in Jan 2016 (46 y/o at the time) and after a few months of these horrible things and a lot of internet research, I went to my regularly scheduled eye dr appt. I told my eye dr what was going on, told him that I thought it was CH (even showed him a printout and pictures), he did a FULL workup and he agreed with my suspicions. He called my PCP that day, who then made a referral for a neurologist. After an MRI and Lumbar Puncture, we had an official diagnosis in August 2016 of CH and MS. Oh well...not the best news but I'm hanging in there.
Just wanted to say thanks for all the info I've gleaned from this site. It has been very useful when talking to my Neuro who, BTW, is EXCELLENT! I started out with just O2 but it didn't abort well enough. My neuro put me on 80 mgs 3x/day of Verapamil and we have upped the dosage to 120 mgs 3x/day. With the meds and a higher flow regulator and NRB mask it has made a world of difference. As an added bonus, my BP is back to normal (115/75) and I've learned how to sleep sitting up (now that's talent!). Going back to my PCP in June for checkup and bloodwork and to my neuro in July for a checkup. Oh yeah, I've recently started the D3 at 5000 IU/day. Turns out that D3 is recommended for MS too! As far as the MS, I haven't been able to find any solid links between MS & CH specifically, but I do wonder if they are connected somehow. My last MRI showed no progression and I am not on any MS meds at present.
Honestly, I consider myself VERY blessed especially after reading so many of your stories and how long it took for you to get diagnosed. Right now, life is manageable and I'm pleased with my outcomes so far. I might have a very mild CH once every 1-2 weeks, but now I know what to do thanks to all of you guys. Sorry if I've been a little long winded but that's sorta hereditary. Plus, its kinda nice telling people that truly understand. Please feel free to ask me any questions or make any recommendations that could help me. Best wishes for PF days to all!
Payg