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Title: Neuro appt. Post by athome on Jan 17th, 2005, 2:19pm What a waste!!! This post is pure venting... I went to a new Neuro today. So I went in and explained my situation (I did not start off by saying that I had CH just headaches) as I explained he said sounds like you are suffering form CH. At this point I was excitied because I thought he knows about them. He asked me to explain the pain and I did - I told him that I have suffered for 15 yrs and that there has not been any change in the cycle but that I now have to take my daughter to school and something that simple has become impossible he suddenly interrupted me and said "lets get back to the headache" I could not believe that he did that! So he asked have you ever seen a neuro I said yes and that neuro said I suffered from migraines - which through my own research I think I suffer from CH he said "CH are a form of migrane". He asked have you ever taken anything for them I said Imitrex pills that did nothing for me - I wake up from my sleep with pain and by the time the pill started to work (if at all) I had already been in pain for over 30 min. "Have you ever used Tylenol or Advil?" I thought - did I not just tell you that Imitrex does not work did he think Advil was better??? I said that doesn't help he said Aleve? I said NO! He said well I'm going to ask for an MRI and have you take these pills that are just like Imitrex (Relpax 40mg) you may experience chest pain. At this point I was ready to run out - I just told this guy that Imitrex pill did not work so your going to give me the same thing but with a different name. I was so disappointed. He then said if that did not work he would give me steroids that would lower my immune system and do something to my hip bone (I think that's what he said). So I sat there thinking this has to be a bad dream and I ask him what about oxygen? He very quickly replies that "Yeah it works for some, insurance probably won't cover it, and he did not know where I was going to get it." I asked for a Rx and the only good thing he did was give that to me. He only wanted answers to his questions and I wanted someone to listen and help me find some type of abortive. I am now trying to get my hands on an oxygen tank - I have spoken to some medical supply stores but I am not sure what size tank (or does that matter)? The doc did not give me any info on the oxygen other than to do 6L/min and honestly I just wanted out. I am off to a med. supply store to see what I can get. Thanks to all for letting me vent. |
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Title: Re: Neuro appt. Post by Tom_Thumb on Jan 17th, 2005, 2:42pm Hi I no how you fill I ALSO just got home from the doctor . But I DID NOT asked for help . We as clusterheads have to be hard core on what we want to try . I told the doc to give me VERAPAMIL / NEURONTIN /FIORICET /IMITREX / AN O2 AND THATS WHAT I GOT . Hey for the 02 you should find a med supply co. that will come to your house not only with a tank but bring the device that make 02 and you will not run out . Tanks get empty fast . In my mine tanks are used if you leave the house so that you can make it if you get hit somewhere other than home . Sorry things did not go like you thougt . If you are sure that you have ch then a MRI or CAT SCAN WILL NOT HELP ANYTHING .I have had many of both . END results emty wallet no answers . Hang in there we will win GOD BLESS |
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Title: Re: Neuro appt. Post by nani on Jan 17th, 2005, 3:31pm It's so true that we often have to take the lead when it comes to our treatment options. We are often intimidated by doctors, and we must not be. We must demand the help we need. Print out info from here and take it with you. Show him what works for other sufferers and ask for a combo that may work for you. Stay strong...be aggressive PF wishes, nani |
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Title: Re: Neuro appt. Post by Margi on Jan 17th, 2005, 3:41pm on 01/17/05 at 14:19:35, athome wrote:
Sorry to hear you found an cluster uneducated neuro. :( There are a number of different sizes of tanks. My husband uses the 4' tall tank that holds 3000 litres - here in Canada it's called an "S" tank. The thing that worries me most about your post is that he prescribed 6 litres per minute. That's not going to abort your attacks. You need a regulator that will allow you to go higher than 8 lpm and a non-rebreather mask. Read the link on the left, here, for a very informative lesson on proper oxygen delivery. Keep us posted! |
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Title: Re: Neuro appt. Post by Kris_in_SJ on Jan 17th, 2005, 9:06pm I'm so sorry you had a bad experience. We really do need to be our own advocates - just like many who have a specific syndrome or disease. I can't advise on O2, listen to others on that. And, don't be afraid of Prednisone (steroids) if they are give correctly. Please follow this link - print it out - read it - and take it or fax it to your doc. The alternative? Do all of the above, but give the printout to a DIFFERENT doc. PF Wishes to you! http://www.future-drugs.com/admin/articlefile/ERN020304.PDF Kris |
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Title: Re: Neuro appt. Post by athome on Jan 17th, 2005, 11:54pm Yeah! I got me o2 tank. I am hoping that this will abort the beast. I have to say that the man that helped me was great. He explained everything to me on how to use the o2 and he listened (I even told him a little about my appt). He said he had some other customers with CH and he had a print out about CH. We talked and it felt as though I was talking to a friend instead of a stranger. Its interesting how you can touch peoples lives and not know it. I know this guy had no clue what type of day I was having but by him just listening and hoping that the o2 made me feel better really made a difference in my day. I will let you know how my night goes. :) |
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