I'm in the desperate throes of pain and depression of yet another Cluster cycle, coming less than a month after the last one.

I thought I had a good Neuro but turns out that both she and her secretary are acting grossly negligent. 

I went to the ER last week, as suggested by the dr, to get O2 during an attack.  It worked well. I called the dr's office after the weekend and asked for her to submit the Rx for the tank.

the complicated story that ensued would have given anyone a migraine level headache in dealing with this. I had to have a friend take control of the situation because I was in agony and sleep deprived and couldn't speak.
(Meanwhile, I'm taking Indocin when the headaches get to level 8 and above).

Over a week has passed, I can't get the Neuro to call me and I still don't have my O2 tank because the secretary can't seem to fax in the proper information. 
They originally sent an Rx for just a mask.  I had to come to this website to get all the oxygen tank info (flow rates, regulators, etc) and tell the dr what to prescribe!!

I've expressed the urgency with which they need to address this and it falls on deaf ears.   

I cursed them both last night during an attack that woke me from my sleep.

Clearly I need a new neurologist here in NYC.  does anyone have any recommendations??

I'm so tired and now so angry and frustrated.  It's hard enough to keep your spirits up during these nightmare cycles and this is just making the hell even worse.

I'm doing my best to fight and not give up.  I hate this.

But I love you guys.
Shuli

Oh Shuli, I'm so sorry. What about a welding tank? The mask, regulator, and tanks can all be gotten without a prescription. I hate to think of you in so much pain. Hang on. I'm sure these fine folks will help!

Have you tried some of the simple stuff suggested here?
Energy drinks at the first sign of a HA.
Melatonin before bed.

I got a tank from local welding shop.
A mask from our online store here.
A regulator from ebay.
All within 2 1/2 days.

Suggest to your doctor a preventive like Verapamil and an abortive like Imitrex.

Good Luck,you can vent here it's OK.

I can only imagine it would be harder to get a welding tank in New York City. Do you have a car, Shuli? Without one I figure it'd be hard to muscle a tank into a taxi or on the subway. I did a seach not long ago about alternative sources for O2 tanks around new york city and found some used for fishing. They were small E tanks, but PM me if you like and I'll dig it up again. I even have an extra non rebreathing mask- not a good one, but it's something, I'll send it to you if you'd like, and I'm positive we can find you a regulator you can buy locally so you don't have to wait on one from online.

And Melatonin, Shuli- please try it. And if you have let us know how it went. It knocked out the night time hits about 70% of the time for my husband. The difference that much more sleep made in his ability to manage this was substantial.

There are things you can do TODAY that can help, I promise. Let me know what you need and I'll do it.

Thank you both so so much!

I did find a welding supply shop not too far from me (luckily I live in an area with some grit and pulse left to it!). 

I kept calling the secretary and she said she faxed over the info to the o2 supply people. I think my insurance will cover it so I'll go that route first.  but otherwise, I'm happy to know there is a plan B.  already eases some of the frustration.

And yes! I'm off to buy melatonin today.  9mg? I read that somewhere on one of the left-hand links here.

Oh, I did try red bull and it does seem to push the pain off for a while.  I haven't taken it at night because I'm afraid to stay up all night. but I guess I do anyway with the pain, so it's worth a shot.

One more note: I have Imitrex nasal spray.  But I don't think I can take it while using Indocin.  and I don't know how long I have to wait to make sure the two don't interact. 

For some reason not fully understood by me, getting oxygen is always a giant pain in the neck (to varying degrees with varying obstacles).  After reading your situation, and having had many an O2 quandry myself, I would say for you (or your friend if you are too sleep deprived/upset) to call the dr. office again and just insist that it be faxed, ask what exactly they are faxing and tell them it needs to be done immediately b/c you need the oxygen delivered today.  The key sentence you need to say is "I need it delivered today." so that they will fax it promptly.  The oxygen company should have no problem bringing you the tank promptly once they get the prescription faxed.  If you have a prescription, the oxygen is yours--it seems you just need to insist that it be faxed to the oxygen company (and ask for confirmation of what exactly they are faxing so they don't screw up again).  Don't give up.  Keeping my fingers crossed you get the O2 today because you need it.

Sorry I think I posted at the same time you were--so glad to hear that they faxed the prescription in.  Make sure they give you a nonrebreather mask, cause otherwise I have found the O2 doesn't work.

When in cycle I take 10mg slow release Melatonin 1 hour before bed. Fast acting Melatonin I take 5mg 1/2 hour before bed and another 5mg just before falling asleep. I like the slow release becuse it seems to work until morning.It can also take 2/3 days to work well, so dont give up. Ask your doctor before mixing anything with Imitrex.

my husband used 9mg, but Katie used 25mg, and many folks are somewhere in between on the Melatonin. So you might have to experiment a little with the dosing. Good luck!

And the Imitrex nasal spray worked well and really quickly for my husband, but we tried to really minimize it's use since some have said it causes rebound headaches and can extend the length of the cycle.

What about Batch's PH formula?

Ok, picked up some Melatonin for tonight.

Had an infuriating phone call with my Neuro, who finally called me back only after I had another Dr. call on my behalf.
She told me that she's never had to write an Rx for o2 and it's not something they do (even though she told me at my first visit that she could get it for me) and referred me to a Pulmonary Dr.
She was very antagonistic and defensive because she didn't know how to write out the specifics for the tank (flow rates, masks, etc).

Moving on.  I've made an appt with another neurologist. 

Love, love, love, when they try to blame the patient for their lack of knowledge. 

Dont forget sometimes the Melatonin can take a couple days, BUT many have had success with it the first night.

Prayers and good luck.

[smiley=hug.gif] 

Good luck with the melatonin.  Got nothing nice to say about your neuro so I'll say nothing   [smiley=bigtiny.gif]

I dropped in to the chemist this morning to pick up some more nasal spray and the look that I got from the woman there - same woman every time, same look  >:(

I don't know what the friggin problem is with some people  arghhhhhh

:) I hope you get your 02 soon!!!!!

Kate

you owe it to yourself to get an appointment with dr sheftell @ nech in stamford!!!!
he's a gem and literally wrote the book .
i live on long island but will always be a queens boy at heart....if you need anything drop me a pm and  I will ensure that you get whatever you may need  you're only 30+ away.

no need to be in pain!!! call nech on monday 12039681799 it's only 30+ from manhattan at least from uptown.... you can tell them eric diamond referred you.

drop me a line if needed.
please forgive the lowercases...i'm on my blackberry and it's just easier

pf times and breathe

eric

My lord what a pathetically ignorant, willfully ignorant, lazy scumbag of an idiot you have for a neuro.

Unfortunately that is par for the course with neuros though, so it sure would be nice if you'd be able to  connect with a headache specialist.

@bejeeber - I couldn't agree more.  the only helpful thing is that it allows me to funnel my rage during an attack at someone instead of invisible entities or myself.

Eric - thank you!  I did make an appointment with a neurologist in town - who came very highly recommended by someone I trust and attests to her compassion.  I'll give it a shot.  If not - I'm off to CT. 
It's relieving to know there are more options - and that there's a fellow CH'er nearby!

Shuli wrote on Dec 5^th, 2010 at 12:31am:

It's relieving to know there are more options - and that there's a fellow CH'er nearby!

There are lots of us just a few mouse clicks away too.

Shuli wrote on Dec 5^th, 2010 at 12:31am:

@bejeeber - I couldn't agree more.  the only helpful thing is that it allows me to funnel my rage during an attack at someone instead of invisible entities or myself. Eric - thank you!  I did make an appointment with a neurologist in town - who came very highly recommended by someone I trust and attests to her compassion.  I'll give it a shot.  If not - I'm off to CT.  It's relieving to know there are more options - and that there's a fellow CH'er nearby!

I'll drive you!!! Don't waste time

good luck

Mike NZ wrote on Dec 5^th, 2010 at 1:05am:

Shuli wrote on Dec 5th, 2010 at 12:31am: It's relieving to know there are more options - and that there's a fellow CH'er nearby! There are lots of us just a few mouse clicks away too.

Yes! the biggest brightspot in the horror show. 

Shuli,

Find a time to get together with Eric.  I've not had the pleasure of meeting him in person yet, but I definitely want to.  He has been a real friend here on the board.

Meeting another clusterhead in person can be very liberating.  Just knowing you are not alone is GREAT therapy.  Knowing it form being on here helps, but when you meet them in the flesh it is just different.  It also helps to have met some others when you are reading posts.  We are not able to put body language and vocal inflection in our posts, but having met others it helps to insert it in your mind when you read posts.  I found after having met my first CHeads I understood posts much more easily and wan't offended by the brevity of some posts.  (That isn't aimed at you, but is meant for general consumption.)

If at all possible, St Louis in Jan is a beautiful place. (NOT)  However, we do have a great weekend getting together.  It is life-changing.

Jerry

I bet you're totally right, Jerry.  Just the relief from an online forum is so incredible - I imagine an live interaction is that much deeper.

St Louis in January is c-c-c-old!  I lived there for 4 years while in undergrad. I loved it!  Keep me posted on the life-changing weekend get together - it'd be a great excuse to come back and visit.

What an incredibly strong bunch of people.

Shuli wrote on Dec 6^th, 2010 at 6:27pm:

I bet you're totally right, Jerry.  Just the relief from an online forum is so incredible - I imagine an live interaction is that much deeper. St Louis in January is c-c-c-old!  I lived there for 4 years while in undergrad. I loved it!  Keep me posted on the life-changing weekend get together - it'd be a great excuse to come back and visit. What an incredibly strong bunch of people.

You will find the info here:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Come join us.....  :)

What Bill said!  I know when I went to the first DavCon (the predecessor of LouCon) it changed my life, and I only got to stay for 45 mins.  I try hard not to miss any more.  You can talk CH or not.  You can talk life, or not.  You can just sit and be in the presence of others who don't look at you like you grew a third eye when you get hit.  They'll just ask what they can do for you and then leave you alone until you are done.  It's phenominal.

Jerry

Thanks!  I just might come out and meet you guys!!

I love these threads. Good advice from all.
take this with ya.
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Make them get you 02. Did I mention how much I love doctors? ;D Your woman neuro thinks by training that a women to have CH is possible but not probable. That is pure speculation but thats what I think.
the bb

The Doctor Game I call it, been there and done that. I have found, thanks to this site, that I know more about CH than a headache specialist I've seen. (PHD) A Doctor that'll work with what you know, is a great thing.

I know I don't have to tell you. You're well on your way to better times.

Don

I am preparing an entire file of info to take with me to the neuro on thursday morning.  The reason I'm going to this particular doctor is that she is understanding and sympathetic - so I'm hoping that if I present the info in the right way, she'll get on board and start writing Rx's for good meds - not the crap I'm on - and get me a tank!!! 
But the best news is that due to the support I've found here - and knowing that through all of this I'm not alone, I'm not crazy, I'm not depressed and miserable for no reason - my spirits have lifted and that has taken the edge off of so much of the this.
the pain itself is enough.  all the other emotional stuff just drags it to the bottom of the ocean and leaves it there.
Last week, and even yesterday, I just didn't know *how* I was going to make it through the day and night.  let alone the week.  It got so daunting.  I felt so trapped.
Today I feel like I can move forward and that there are so many options.

I can't wait to attend a gathering!

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!

Quote:

I can't wait to attend a gathering!

I hope you can attend in St. Louis. It would be really nice to meet you and surround yourself with clusterheads.

(We will have 02 with us lol)

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

Quote: I can't wait to attend a gathering! I hope you can attend in St. Louis. It would be really nice to meet you and surround yourself with clusterheads. (We will have 02 with us lol)

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

Guiseppi wrote on Dec 7^th, 2010 at 3:07pm:

Jimi wrote on Dec 7th, 2010 at 2:19pm: Quote: I can't wait to attend a gathering! I hope you can attend in St. Louis. It would be really nice to meet you and surround yourself with clusterheads. (We will have 02 with us lol) 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

That made me very emotional just thinking about it. 
Oxygen party?  I'm in!!

I'll start looking at tickets. 

It'll be great to meet you awesome super-humans in person. 

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

Joe

Guiseppi wrote on Dec 7^th, 2010 at 4:41pm:

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

I'ts better than a family reunion!  Can't wait to meet you.

Jerry

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

I am preparing an entire file of info to take with me to the neuro on thursday morning.

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!

Juline M. Bryson, MD

Attending neurologist at St. Luke’s–Roosevelt Hospital Center.

She treats Cluster Headaches.

She's the real deal.

check her out.

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

Shuli wrote on Dec 7th, 2010 at 10:18am: I am preparing an entire file of info to take with me to the neuro on thursday morning.  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!

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

jon019 wrote on Dec 7^th, 2010 at 8:03pm:

Mike NZ wrote on Dec 7th, 2010 at 7:08pm: Shuli wrote on Dec 7th, 2010 at 10:18am: I am preparing an entire file of info to take with me to the neuro on thursday morning.  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! 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

You have just heard from two very wise men!

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!   [smiley=hug.gif]

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

Thank you all so much for the advice and help preparing.  I'm writing out all my notes now.  My #1 priority is getting Oxygen.
Second priority is getting meds to regulate the attacks & bad shadows that I have every day.

Thanks Jargold for Dr Bryson's name!  I live very nearby.  I'll make an appointment - I read her bio and she lists Cluster Headaches as a speciality. that already is a shimmer of hope!

Can't wait to meet you guys - and I'm banking on those hugs, people.  bring it.

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. :'(

Terrible!  This is a strong statement but I would not even bother with neurologists.  Call a headache specialist.  Some will get you in very quickly if you say you have cluster headache, or, if not, you are more likely to find there has been a cancellation with a headache specialist than a neurologist (someone with occassional migraines is more likely to cancel than someone with, for example, multiple sclerosis) and they can fit you in in that spot. 
The treatment you have been receiving from these neurologists is unacceptable.  Don't waste any more time with people practicing quack medicine when it comes to CH.  This advice coming from someone who has been there done that. 

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.

Yes and Yes.  I'm learning fast - and the only reassurance is that this seems par for the course. I feel lucky that at least I got a quick & accurate diagnosis.

I'm going to call Dr Bryson on Monday morning.  Hopefully I can get it in.

thanks...

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

I agree, it's totally unethical and it happens.
Can I ask how you are dealing with the headaches, are you just riding them out?  (You don't have to answer--I just feel bad that is why I'm asking.)  Go to the ER tonight if it gets bad.
(My personal advice to you if you get them at night--try taking 3 benadryl right before you go to bed, if you are not used to having benadryl in your system, this will probably buy you some relief. tonight.)

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!!!! 

I was wondering how you things went for you last night--sorry to hear it was such a rough night.  That sounds a lot like what was happening to me at the beginning of this cycle.  I don't know how you're dealing without O2, because even with O2 I could not deal with that frequency and the lack of sleep.  One thing you could try to do is to go see your regular doctor, print out the O2 information from here and ask for oxygen.  Also, it really sounds like a preventative like verapamil might help you a lot--I am on it now and it is helping, had one headache try to break through last night and that's it.  Plus I am in MA and this low pressure system over both our states is not helping.  I would definitely at least ask your regular doctor and even suggest something like verapamil.  Sometimes a regular doctor may be more agreeable to giving you what you need than a neurologist who just doesn't want to take the leap of prescribing oxygen (which makes no sense).  You deserve to feel better--a LOT better.  I hope you can get some relief very soon.  And some sleep.

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.

Thank you Starlight.  I appreciate it.
It was a doozy. 

I realized that I have a script for prednisone from my first dr's appt. I filled it today and will start taking it tomorrow.  I can't take anymore beatings!

I think you're correct about Indocin - they use it to rule out other headaches.  and well, it's ruled out I believe.

Hope your pain subsides as well. 

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 [smiley=hug.gif] 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

I think this is a good reference to give to any doctor considering that it should be on their shelves therefore denying you is a direct violation of their oath if nothing else medically would suggest that you shouldnt use.....
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Thanks Kate & Eric!
I'm starting the prednisone today.  It might be too a low of a dosage but here goes nothing!

oh - took 12mg of melatonin last night and had a decent night. shadows, rumblings, but no attacks!  yay.

Hey Shuli, just checking in- been away from a computer and the whole family down with a stomach bug for 3 days- but I am so sorry you are having so much trouble with the docs! Geez, I'm not sure it could be worse if they were trying to be, really.

Glad the Melatonin is helping, it really helped my husband, and sleep helps the ability to cope.

Not sure if this will work, but could you ask the O2 place (in my town it was the same as the welding supply place) what they need and then get that to the 2nd nicer doc? Like a sample page of what they need to see? Just an idea.

Hang in there- we're all pulling for you!