So glad you're feeling better! Have you started on the Melatonin yet? My husband found that it helped his mood and sleep quality as well as blocking hit nighttime hits. Here is a list I found of Melatonin deficiecy symptoms when we were researching it to determine if he wanted to take it:

Common symptoms and signs of melatonin deficiency:
insomnia
difficulty getting to sleep
difficulty falling back to sleep when awaken during the night
light sleeper/easy waking during the night
early morning awakening
un-refreshing sleep
lack of dreaming
family history of insomnia
personal or family history of breast cancer
personal or family history of prostate cancer
prostate enlargement
fatigue
depression
scoliosis
anxiety
sensitivity to stress
cataracts
neurodegerative disorder (MS, Parkinson's, Alzheimer's, ALS, etc)
elevated cholesterol
high blood pressure
blood clots
heart attack
heart arrhythmias

Now, it also had another effect. Taking the Melatonin was action; and action is the best remedy for depression. Whether he believed in it or not in the beginning it was the very act of striking back against this beast that started to help. This was premeptive, it was going on the attack instead of waiting for the next hit. It was, in fact, amazingly successful for him, but even if it hadn't been it was a change in mentalality from the "nothing helps, why try" state to one of hope and effort and determination.

Just thought I'd put that out there. Keep us posted on how it goes tomorrow!

Jimi wrote on Dec 7^th, 2010 at 2:19pm:


One of my favorite DavCon memories is everyone hanging out, someone starts to get hit, a few people bustle around helping get the 02 going, someone grabbed a dish towel with ice, no one else even broke stride! The person getting hit was made to feel absolutely nothing was out of the ordinary. Sealed the deal for me. If you can attend, I promise you won't be sorry!

Joe

Just one word of warning....this group hugs......a LOT! So looking forward to meeting ya!

Joe

Shuli wrote on Dec 7^th, 2010 at 10:18am:


I'd be careful of having too much info and making out that you want the neuro to read it all NOW.

What I'd do is to have the material with you, well indexed. Then have a sheet of paper with bullet points of what you want to discuss, e.g. oxygen, different meds, etc. Then as you discuss each point you can reference the material without overwhelming the neuro. You can also make notes as you discuss things on the same sheet so you can remember later what you went through.

You're also not likely to forget to talk about something if it's written down too.

Just imagine being in their shoes. If you make it easy for them, you'll get a better result.

Hope it goes well!

Mike NZ wrote on Dec 7^th, 2010 at 7:08pm:



That there is GOLDEN advice. It is the rare doc who is not intimidated, insulted, ticked off, whatever when approached by a patient who probably knows more about the condition than they do....and throws a bunch of info in their face.

Take your cues...proceed with courtesy and respect... but advocate firmly for yourself....aint no one else gonna...If you don't get the same back...fire 'em and move on.

Not bashing docs here...this is the reality with which we live...

Best,

Jon

I'm pulling for you Shuli and I hope you have more luck with your Doc than I did with my current neuro no matter how I gave him the information he refuses to look at it or listen about O2.  Praying I get in to see Dr. Rozen SOON!!!

Wishing you Much Luck Shuli!   

P.S.
You will remember your first fellow CHer hug for the rest of your life!!   

So I don't think it went as well as I would've liked.  She was really very nice and I could tell she meant very well - and asked a lot of questions.
But I told her that the reason for my visit is that I have already been diagnosed with CH - and my last neurologist, after assuring me she could get me oxygen, refused to do so.
the new neurologist said she was concerned because she didn't know how to prescribe that either.
Her honesty was very reassuring.
But we didn't come up with a game plan.

She asked me to continue on the Indocin (which I really don't like - it's causing a lot of stomach upset and makes me really dizzy) for 5 days and to come back on tuesday.
I told her it doesn't do anything on level 10 hits.  But she said she wants to see if it eliminates the "other" shadow headaches.

I guess she's trying to rule out other things - she asked me to get an EEG.  She thinks maybe allergies might be playing a role (I don't have seasonal or other allergies).  She also asked me to try to take my inhaler during the next attack because it might be hypoxia.  She noted my low blood pressure. Yes, I have low blood pressure and get dizzy upon standing up.  That's been going on for years.  Yes, I have asthma and yes I'm slightly anemic.  but this is NOT causing my CH's.  I know she's trying to rule all of this out and being thorough. 

But I feel like this is not addressing my critical situation. 
I left the appt thursday morning feeling really glum.  It's only causing a bad feedback loop of more isolation and stress, which makes the shadows and everything else worse.

What's even more interesting is this:  My first neurologist - the aggressive defensive one who would not call me back with my MRI results from October after repeated requests - strangely calls me on Thursday afternoon leaving me a nice message saying that I have not followed up with her about my MRI and "nothing to worry about, it's quite benign"! WHAT is benign?? I mean, I know what the word means - but what in my brain is benign?
It's all so aggravating.

At the very least, I'll go to the nice, sane, caring neurologist on Tuesday and have her explain my MRI to me.

Obviously I need to go to specialist. 

Trying to keep my spirits up - I don't have to preach to the choir - but it's very hard.  This is a daunting struggle.
I feel like the options are running out - or at least my ability to find new options is.
sigh.

Sorry...I see that someone recommended a neuro who knows about CH--that would be an exception to my rule.  Otherwise you take a big gamble they don't  know how to treat CH is all.

u better!

I so wamt to call the AMA and make a formal complaint to the Ethics commitee. how dare a dr give u a diagnosis then withold first line medications!

i think there was a paper written by Goadspy stressing the unetical nature of such dr behavior 

Let me at them Shuli!

oxoxoxo
E

please don't feel bad about asking! that's the joy of being on here. 
I have been taking 9mg of melatonin at night for the past week or so - and it's been helpful. I forgot to last night because I was in deep pain.  My jaw was sore and locked - like I'd taken a few beatings in the boxing ring. 
slept about 2 hours - and I use that verb lightly.
Up since 3am in bad pain.  Level 9, stabbing, throbbing shadows.  didn't get to 10.  but 8 hours of sustained level 9 pain. paced around in that awful state of feeling like you're in a bad horror movie. 
Took imitrex 5mg nasal.  Nothing.
75mg Indocin.  Nada.

It's finally easing up, fortunately! And its a cold and very rainy day here so I'll just go try to sleep for a bit.

I am asking santa for an 02 tank for xmas!!!!

Oh, and with the indocin, I don't think that that helps cluster headache--I think it helps a different kind of headache called CPH.  So that is probably not going to help your headaches.  I am not sure if I am right about that, others here would know better.  I hope you get some relief and get to see a doctor soon.  Fingers crossed for you.

Hey Shuli,

It's horrible to hear that you are still hurting and not having much luck with the medical fraternity    I don't really have much to offer in the way of advice so I'm sending you a big from down under.

To be honest, I just don't understand the problem with writing a script for 02.  My doctor (GP) just wrote on a letter head... this person suffers from cluster headaches and requires oxygen at 15lpm.  I took that letter to the local supplier - job done.  How hard is that???  Urghhhh

I do so hope you get a break soon!! 

Kate