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DemetriaBeth

<slinking back in>I'm almost ashamed, but....

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Okay...I came here for the first time a couple of months ago.  I was starting to see a neurologist and she put me on a blood pressure medicine, and refused to put me on oxygen.  So after discussing it with you guys, i went to see another neuro who promptly ordered an eeg ( i think that's it--they hooked me up with a bunch of wires and goop on my head) the nurse said it would take about 10 or 15 mins.  After 20 mins, i fell asleep.  I woke up 1 hour and a 1/2 later and i could hear the staff eating lunch.  I kept calling for them but they couldn't hear me.  Finally i yelled really loud and they came and unhooked me and gave me two prescriptions and ordered an mri.  When i got to the drugstore, the pharmacist wouldn't fill one of them as it had a potential dangerous interaction with one of the medicines i was taking.  My PCP then sent me to another neuro who has put me on Topamax, but is still reluctant to put me on oxygen.  How do I tell them that I NEED to be on Oxygen.  I am thinking about printing out the info from here and showing it to her, but shouldn't i just be like, look, I really believe that i should be on oxygen?  Also, i was wondering is Topamax a viable preventative?  Thank you for your help.

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Welcome back to this great board.

I recognize your problem as I didn't get O2 myself. In 2007 I was begging for Oxygen and didn't get it. In this year cycle I was begging for O2 again and I didn't get it. They put me on Prednisone en Imitrex injections but as I can't handle these meds because of the nasty side effects I quit my medicine and became a member of the Clusterbuster website.

Here I found the information I needed so much. With some help and good advice from some members here I detoxed and busted my cycle to a lower level.

As busting seems the only thing that help me I continued the busting  till my cycle is over. I'm now getting great results but the beast is not gone, but I can handle it again.

I visited the Neurologist past week and she ask how things are going. I said things are going well. She wondered if the Verapamil and Prednisone helped me. I said I refused to ingest these meds as I quit after one week with the most nasty side effects you can imagine. She advised me another drug but I didn't want to know anything about it and refused to get new meds. I said I was busting my CH and had great results. Well as soon as I said I clusterbuster my CH they could only say "this isn't good", it is a harmful drug and I couldn't do this. As I showed my results they won't believe this was caused by busting. It was just my cycle that almost ended. Well this was fine to me, they don't need to help me. As she knew I didn't want any other medicine then O2 she said maybe you have to try this. I said, the only thing I went to the hospital to visit her was for the oxygen. As she know I don't want anything else and I will continue busting she did give me O2.

As my cycle is now such in low conditions I didn't order the oxygen yet. But I could call at anytime and O2 will be delivered to my house.

So in the end this was for me the only way to get oxygen. Just had to say: hey I quit all meds you gave me and I clusterbust my cycle and need O2 with that.

It looks like they first want to try all other medicines available before turning on O2. For me it looks like money is involved and not the patient needs.

I hope this will be helpful to you. I don't say you have to say goodbye to the doctors but hey you are the boss of your own body !!

Oscar

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No slinking required, DB -- happens all the time.  We're just very glad you're back.  I'm not sure what you mean, regarding oxygen, about "printing out the information from here," but what you definitely should be showing your neuro are the studies and reports from medical organizations that prove beyond a doubt that oxygen aborts cluster headaches, without side effects.

I'm going to paste something from a longer file about O2.  You can read the whole file here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

>>The effectiveness of oxygen as a CH abortive has been demonstrated in controlled medical research, and reported in prestigious journals.

“High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association  http://jama.ama-assn.org/content/302/22/2451.full

“Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-Vie...

In addition to looking over these documents yourself, I suggest that if your doctor is not receptive to prescribing high-flow O2, or if you don’t know if s/he will be receptive, you might print these out and provide them to the doctor in advance of your appointment.  Or at least bring them to your appointment—doing that helped my daughter finally get what she needed. (Some other “Thoughts about Talking to Your Doctor” are included toward the end of this file, in item 9.)

Note also that based on this research the European Federation of Neurological Societies lists inhalation of oxygen as the abortive of choice for cluster headaches in its official guidelines.  The guidelines state: "The first option for the treatment of acute attacks of cluster headache should be the inhalation of 100% oxygen with at least 7 l/min over 15 min . . ."  (It also lists sumatriptan injections.)  You can read the guidelines here: http://www.guidelines.gov/content.aspx?id=10471 .  7 liters per minute is widely considered to be too low of a flow, however -- and the summary chart of recommendations within the guidelines says 15 lpm.<<<

I think you are best off trying to use this kind of information to get oxygen.  If you choose, you might read the whole file, since the problems of getting a proper setup are often not over even when a doctor agrees to prescribe it.

Also, on this page -- http://www.ouch-us.org/chgeneral/doctors.htm -- you'll find lists of doctors recommended by people with CH.  Often they will be more likely to understand oxygen and prescribe it.  Maybe there's one near you.

Like I say, welcome back!

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But I could call at anytime and O2 will be delivered to my house. 

Oscar, I would recommend not waiting until you're back in cycle (if you ever are) to get your oxygen set up.  So many frustrating problems can occur during the set up phase (see some described in this document: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790) that it's best not to have to deal with them while you're having headaches.

Thank you for your great messages at this forum, for your inspiration, and for stepping in to help others.  You are greatly appreciated.

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I'd like to second CHF's commendation of our new friend Oscar. He jumped in with both feet from the very beginning and started answering questions almost before he had answers. So glad you're here, Oscar. :)

Ron

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Oscar,

I completely 100% agree with you.  The drug companies don't get a penny from O2 prescriptions.!!!  Every turn I made when seeing the doctor for my CH, was just another drug to 'try'...  It seems the doctors are protecting the drug companies bottom lines...  (ok don't get me started :)

Notice I used the past tense when referring to seeing my doctor.  Other than a call to update my O2 presctiption from time to time, I don't see him, nor the neurologist any longer.  I'm so glad I'm not taking any of their cr$p drugs any longer.

Jeff

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Wait a minute.

After the EEG, did they tell you the results? I.E. do you have seizures?

I'm asking cause Topomax is also an anti-epileptic.

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But I could call at anytime and O2 will be delivered to my house. 

Oscar, I would recommend not waiting until you're back in cycle (if you ever are) to get your oxygen set up.  So many frustrating problems can occur during the set up phase (see some described in this document: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790) that it's best not to have to deal with them while you're having headaches.

Thanks CHfather for your great advise, very much appreciated. I'm now in such low cycle, just a couple of PF nights and when I get hit it's not higher as KIP5 for 15 minutes or less. I thought it would be to short and low KIP for O2. I was thinking I had a period of 3,5 years PF, I think but this could only be a thought that I get lucky for another 3,5 year but that is uncertain. I was planning to bust every 4 month's till I get hit again.

You changed my mind, I will order the O2 and the mask on the CH site just to be prepared. 

Thank you for your great messages at this forum, for your inspiration, and for stepping in to help others.  You are greatly appreciated.

Thanks you very much for your kind words, you let me blush.

I'm so great full that I found this website with the great people on it that give very much help to each other. Feels like a new family. When I'm in full cycle it's not hard to talk about and help others, I hope I can deal with that better after cycle. I'm not afraid anymore thanks to the Clusterbuster site. As I got so many great reactions and help it's a pleasure to help others. Like I said, feels like a big family here.

I'd like to second CHF's commendation of our new friend Oscar. He jumped in with both feet from the very beginning and started answering questions almost before he had answers. So glad you're here, Oscar. :)

Ron

Thank you to Ron for your kind words, you people here make me blush. It's also the people here that gave me a good feeling, seems this site has a lot of new friends with the same disease. As others help me so much It feels good if you can do something back to the community. When it's highly appreciated I feel very comfortable with that.  This site and the people changed my life and I'm very happy with that, thanks !!!!!

@DemetriaBeth, as you can see, you are not alone here  ;)

Oscar

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