Hello, I haven't posted in awhile but wanted to update on my progress. Finally saw a nuero/ headache specialist on wed. after a month long wait. :D Of course I was so hopeful that he would be my answer and put me on the right track to getting the proper meds and Oxygen, I'm going on 4 months now of my 1st cycle. It didn't go as well as I had anticipated, #1 my records had not been sent as promised by my PC Doc. I was dumbfounded, :-? to put it mildly, 2nd time seeing a specialist and they had no records. Makes it so much more difficult for Specialist to review and assess your illness. Lots of wasted time on unnecessary questions about testing and results, medications tried and failed, etc. I tried to ask a few questions about other symptoms and pain I have, NOT RELATED, was the insensitive response I got.  I asked about other testing, like Hormonal - GO SEE YOUR GYN, :-/ was his response. But I have persistant eye infections in my droopy eye Doc, isn't that related to my CH? GO SEE AN OPTIMOLOGIST or your PC Doc was the answer I got.  >:((I couldn't believe I had waited a whole month to hear this crap.) We then discussed medications he wanted me to try. Verapamil and he mentioned another drug, don't remember the name, it wasn't anything I'd heard of on this sight or anywhere. I asked about Oxygen, He said he didn't recommend it, found it didn't work well for any of his patients, etc. etc. I had to disagree with that statement and told him everyone I had talked with highly recommended it's use and have excellant results aborting a CH and I didn't understand why he wanted me to take all these harmful drugs and not at least try the Oxygen that is harmless to me. He finally relented to giving me a script for Oxygen, which I'm wary of it being written correctly for insurance coverage, we'll see. I haven't gone yet to the Oxygen supplier, we'll see. I left my appointment in tears again,  :'( even though I guess I got what I went there for, the meds. and Oxygen script. It was a very tough battle, guess I just don't like to fight or think you should have to fight for something you need to survive medically and did I really come out the winner here? I don't know yet.  :-?
     That evening I got a phone call from my nuero/specialist I had seen that morning. He had talked to my PC Doc, had gotten my records, obviously reviewed them, he had  a completely different attitude and I even sensed concern. He even encouraged me to HANG IN THERE! We'll get you on the right medications.WOW! Oh my goodness. :D A miracle! Prayers answered! There is hope. Maybe, just maybe he will be willing to work with me after all.
      Just had to vent guys and gals. Thanks for listening! Praying for us all to PFD&N.
Donna Mae

Oh Donna...you have just experienced what we call the MD run-a-round.   I wish I had a dollar for every time I've heard it.

Sounds to me though that your PC doc. may have a clue and for that I am hopeful for you. 


Please hang in there Donna.  Better days are coming.

Hi Linda, Thanks for your words of encouragemnet. I am hanging in there. I know I will get there eventually. I just had no idea it would be this difficult even though I have read so many others struggle with these same doctor/ meds issues. I guess you just can't believe it until it happens to you too. Despite all the ups and downs of this dreadful journey I am OK. I have a very supportive husband and family and Thanks to all I have learned from all of you. Knowledge is power! Not one doctor I've seen over the last 4 months has offered me any information whatsoever about CH, NOTHING!
     I'm hopeful when I go back to my Nuero in a month maybe, just maybe, it will be a much more pleasant visit, I'll be headache free from the Oxygen script he relunctantly gave me and I can say I told you so! I'll keep you all informed!  ;D

Donna Mae
    

Well I'm not the least bit surprised by your experience I'm afraid.

MDs are generally just the worst bunch of dorks when it comes to this stuff.

I've participated in the deafening chorus here of "you have to see a headache specialist!!" to newcomers, but I usually think of that as mainly being for initial diagnosis.

As you've seen, even headache specialists are commonly lazy, ignorant, arrogant jerks when it comes to something so basic as Hi flow non rebreather O2.

Glad you got out of there with your scripts, you did about as good as can commonly be expected.

Hi Donna Mae.  Always makes me cringe hearing these stories and am compelled to throw in my thoughts.  I never saw a doc for CH.  My allergy doc suggested CH after hearing my descriptiuon and when I searched the web, saw the CH description...BINGO! we have a winner.  But that was after 20 years of the glorious CH experience so I could rule out certain more serious things. 

I am not saying people should follow my example, however.........

How much do we pay the people who think we are making up the pain? have migraines? don't need oxygen? are tense? should eat better?  Kind of a sad joke really. 

I feel for everyone trying to sort this out.  In the end most of the answers are here, on this website (of course we are not doctors though).  Most of us get relief from the same stuff and it takes some time to get our dosing right.  Caffeine, oxygen, certain drugs etc.  Promising psychedellics too.

The medical field is great for certain things and a failure for others.  It sounds like things are looking up for you and I hope they continue in that direction.  As a group it sounds like we are all doing better now than we used to.  I know I am, and it is thanks to all ya'll! ;)

Thanks everyone!! >:(oops I mean  8-)

--Shaggy

Donna Mae, I sure hope the O2 works for ya !  I'm sorry the neuro visit didn't go as smoothly as you hoped, but in the end .... you got what you wanted.  Yea, for that !   :D

Hello, Donna Mae. Is that Easton, MA? And who was the specialist you went to see, or where was he located? Just wondering cuz it might make a difference, as well as your regular neurologist. If it is MA, you are right next door to me in Attleboro. I have a really good neuro and will be seeing a specialist from the John Graham headache institute this month. I also have high hopes for that, but exactly for what am not sure. There are some options still after 23 years that I have not tried. The O2 at high flow using a demand flow valve and the Optimask has worked wonders. Let us know how things go for you. Blessings! :)

Hi Donna, you just learned the most important lesson about treating CH: YOU are your most knowledgeable, caring and effective advocate. A person with CH who sits down in front of a doc and says "fix me" is setting themselves up for a boatload of pain. Educate yourself, and work with your doc to get the treatment you need.

GOOD FOR YOU demanding the 02 over your uneducated doctors objection.......not stupid, just uneducated......one of many examples of a rare ailment that most just don't know about.

You have a great attitude, don't let ANYONE  beat it down, especially not the beast! ;)

Joe

Thanks Guys for the much needed words of encouragement!

Wimsey I sent you a PM with the details you asked me about.

Hi Joe, Good to hear from you. Thank you for the "pat on the back". I needed it! Being so new to all this, I think I'm doing as much as I can as far as educating myself about this dreadful disease and how to treat it. I'm learning quickly that the most difficult challenge IS finding a caring, educated doc who will work with you. I'm still hanging on to  "hope" that I have found one.
   
    Been on the Verapamil 200mg / extended release since wed. last week. No change yet. Still have daily afternoon- thru evening head/ eye pressure, eye droop, head/scalp nerve pain/ burning. Figure it could take a few weeks, from what I've read here.  Haven't filled the oxygen script yet. Going today. Not sure if my symptoms are bad enough to require it, although it would be good to familiarize myself with the setup and practise using it before I really need it.
 
     Getting close to the 4 mo mark now and becoming more concerned about being chronic. Know it's still way to early to tell, but I just have that nagging suspicion.
Have only had 2 days since Dec 20 that I marked in my journal as being headache/ pressure free or that didn't last for hours which is my norm. Eye droop and nerve pain in my scalp has never gone away.

      I would welcome any furthur advice anyone could offer. Is there anything else I could or should be doing at this point?

Thanks again! So much appreciate all you help!

donna mae   

Donna, You did what you've gotta do as a cluster sufferer:  Be smarter than the stupid docs who've rarely seen anyone in the midst of an attack, and who think that all "migraines" are the same.  Your practice should be sued for incompetence, because under the new HIPAA laws, they're supposed to be able to access your medical records electronically -- don't let them get away with telling you that they don't have your records, esp. when they've had time to get them.  That's just crap.  Anyway, I tend to browbeat my doctors, handing them research papers and medical journal abstracts.  Remember this fact:  Half of all doctors graduated in the bottom half of their class.  They aren't any smarter than you are.  And don't let them tell you whether you're suffering -- only you know the answer to that question!