Hello All.
I am new to this. I am 44 and have just started having these things about 3 months ago. I started this with a headache that I thought was bad at the beginning but now consider the first ones minor compared to the ones I have now. I first went to my primary doctor and he diagnosed the CH as migraines. He gave me a steroid pack and Vicodin. Well as many of you seem to know, that did no good. I returned to his office and he referred me to a neurologist but I couldn’t see the nero for 1 week. In that time I made 3 visits to the emergency room because my right side was numb and had some paralysis in my right arm and right leg. I was also confused, had double vision and problems with my depth perception…. Oh and the pain had gotten out of hand. All three ER visits had 3 diagnoses. 1 Siezures 2 Migraines and 3 Sinus infection. Well I was finally able to see the nero and he said right away it was CH. We were both in a hurry so I thought I would look it up on the internet later. He prescribed me Predisone and Verrapamil. I looked and found this site. I read for a while and thought OMG this is no normal thing and wish I had taken the time to talk to the nero more.

After all of that I have a question. I have been taking the meds for 6 days at 3PM every day and have not had the pain but I have had some of the other symptoms. Yesterday I changed the time from 3PM to 1AM when I get home from work because the side effects were really hammering me at work. Last night at 2am the monster started and lasted for an hour and a half and the pain was more intense than I had ever felt. The pain went away for an hour and the second one hit and it was even stronger than the first. I am not sure how long it lasted but the sun was coming up when I started to regain my senses after the second attack.  Could these attacks have been from changing the time at which I take my meds? :-? :-?

Thanks
Paul

Paul,get yourself a good Nuerologist. Get to the root of the paraysis you mention and then if it is CH,look into the oxygen link on the left of the page.

Wishing you the best  Iddy

Iddy,
I live in GA in the United States. I don't think there are any good ones around here. You can't even find a doctor that knows what he is suppose to be doing. :'(

Hi Stickman!  First of all, I'm sorry you are in so much pain.  I am new to all of this too.  I just started having CH a few weeks ago.  I am from Georgia too!  I must have lucked out, because my family doctor immediately recognized that it sounded like CH.  He seemed really knowledgable about it too.  I am having a MRI done Monday, so I will won't meet with him again until he gets the results.  

I hope you find someone that can help you.  Where about in Georgia do you live?

Hoping you have a PF day,
Pamela

Hi Stickman,

Welcome to the madhouse!  I wish you didn't need to be here, but from what you have described you just found your new home.  The paralysis you mentioned is rare among CH, but I get it too.  Not all of the time, but on occasion.  The paralysis is not something that causes permanent damage, is not stroke related, IF it is what it sounds like.  That being said, you need to get an MRI and MRA to be certain that it is CH and not something else that can cause some to the same types of symptoms.  

The change of time of taking the Verap should not have made that large of an effect.  Most likely it is just the CH getting a good hold on you.  It constantly changes, and what works today may not work the next time you get a cycle.  You have to stay on top of it and be aware of your situation.  You also need to educate yourself and work WITH your Dr.  If you leave your treatment totally up to him you will be in a world of hurt!  (No pun intended, but it was a good one)

Read up on Oxygen, and demand you be given a scrip for it as described in the oxygen info button in yellow on your left.  Improperly used it is less than worthless.  Properly used it has been a lifesaver to many of us.

Feel free to ask questions.  There are no dumb questions (honest ones), but I have been known to give dumb answers. ;D

Jerry