Hi lib,

I understand your frustration.  Believe me.  But you can't expect your PCP to know much about CH.  It's just beyond they're education.  And he/she is right to be concerned about your Mammogram and heart history. 

Your Neuro is the one to talk to about CH.  It is your PCPs job to make sure nothing else like Breast Cancer slips through the cracks.  After all, as bad as it hurts, CH won't kill you.  Breast Cancer on the other hand...

You just have to accept that Medicine is very compartmentalized these days.  Not every Doctor will take the time to learn about an illness they never plan to treat directly.  Especially when it only affects a few patients they'll see in a lifetime.

What my PCP knows about CH I educated her on.  I'm lucky that I found one with sufficient intellectual curiosity and the interest in her patients to want to learn.  Of course, little of that sticks from one appointment to the next    But at least she remembers hearing the words before.

If it really bothers you that much, find a new Dr.  If on the other hand you have adequate access to your Neuro then you may find the combination sufficient.

Either way, you have so much to deal with in fighting the beast.  Conserve your energy for that battle.  Let the ignorant stay so.  You'll find yourself eating fewer antacids in the long run.

Good luck...

-Dennis-

Hi All,
Thanks for the replies! Yes, I have had an ischemic stroke and I understand the benefits of aspirin therapy (i work in healthcare) however, I have a strong family history of hemorrhagic strokes and aneurysms as well. I recently lost my dad to a hemorrhagic stoke that could not be controlled because of aspirin therapy. So I'm sure you understand my concerns; adding aspirin to the Verap could be dangerous in my situation. I think I may be better off to wait a bit and wean off the Verap and see what happens with the CH. If I am episodic, I can resume my aspirin therapy if needed after I finish the Verap.; I just need to be careful. As far as the mammogram goes, I know the importance of keeping an eye on things as I have had a tumor removed (I also worked in oncology for a number of years) hence, yearly mammos as opposed to every 3-5 years; age dependent.  I guess my complaint with the PCP was that NOW is not the time to discuss normal healthcare issues and preventive medicine. Today’s visit was supposed to be a follow up from the neuro visit and plans to move forward. I guess I expected too much from her today; it was as if she blew off the dx and it was business as normal.
The CH is very new to me and, as I am finding out, most healthcare providers. We wasted 5 months of compartmentalized medical practices to discover the hypothalamus was to blame for all the symptoms. I guess I was just too dependent on my healthcare providers. It was actually my husband who put it all together after I had my first real cluster attack in May. This is a wonderful support site with so many experienced folks. I have learned more from this board than I ever could have on my own. Thanks so much for the compassion, caring, and advice!!!  lib

Hi Joni,
When all this started back in January I had every cardiology test there is and everything is normal except my heart rate which is about 112 resting. We've concluded that is normal for me and (my opinion) is probably due to the hypothalamus since it controls the chemicals that determine heart rate. I've had this heart rate for as far back as I can remember. The good thing is there is no plaque and the anatomy of the heart is perfect. On my final cardiology visit he told me to drink gatorade and go for a walk.. LOL!!! Now, I like that suggestion!
I understand the ear thing too; for me, I know when I'm going to have an attack because I get this pressure in my ear. After an attack, sometimes a couple of hours later, a tee tiny bit of fluid drains, maybe a drop or so. I told this to the neuro and he just looked at me like I had three heads.  This happens to someone else on this board...can't remember who though. Aahhww, this memory thing is going to drive me insane! LOL
lib

lib wrote on Aug 17^th, 2010 at 9:04pm:


With me the Memory loss seems temporary and comes with the CH hits, my thinking is never particularly good just before, during and after a ch hit.  Yes the Memory thing and lack of clear thinking are an issue for me at work too.  I have made a few mistakes this way thankfully they were fixable and my immediate supervisor is understanding for the most part. 

The twitches come and go, I once had the eye twitch going on for MONTHS, talk about annoying!  The lip twitches are more sporadic for me and I don't get them often.

At least your neuro is really thinking about you as a whole with having you get your Disability paper work in order, my current neuro isn't so caring.  Yes, I am looking to change and am currently on a waiting list for a new neuro.

I hope this helps! 
PF Wishes!
Ging...

Lettucehead wrote on Aug 17^th, 2010 at 9:27pm:


Agreeable.  The info that comes with each script doesn't list memory loss with side effects and for myself not been noticeable using higher doses.  The other effects in conjuction with CH Kirsten mentions have been posted.  We can be differently affected.



My very elderly doctor just retired, I'm procrastinating looking around to replace his sage advice.

I once had what had to be surely a shoulder injury extending through my collar bone, sore for months.  Mentioning it to him, I raised and lowered my arm up and down so he could hear my concern something's wrong with an audible shoulder joint crackling noise each time.  Approaching me and grabbing my forearm and shoulder he gently lowered it saying, "Don't do that with your arm."  Eh, in time it's just fine without a creak.

Don't know.  I can see him looking over notes from previous visits asking how I been.  Twitches.  With a casualness uninterupted witout even looking up, I can see him saying, "Eat a banana."

I take verap, but in the dark answering the mysterious complexity of medicine.

Joni wrote on Aug 18^th, 2010 at 11:27am:


That's more polite than the terms I generally use 

lib wrote on Aug 18^th, 2010 at 9:20pm:


My Internist calls it Scandinavian Decent....seriously!!!  He says it comes with a host of nuisances that one of my daughters and I battle.  Craaazy, huh?!  I will have to say that I do notice it in other white, reddish, blue eyed people as well.  We even studied this in my classes in college pertaining to children.  Oh, well...everybody has something!  We are a lot of fun and very loving!  Pros and Cons, Yin and Yang...life is a paradox!