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Maggi Jons
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doc problems
« on: Jan 5th, 2005, 1:20pm »
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Hey Everybody
 
I have a Neuro im having trouble communicating with.  
 
My Neuro is most of the time really arrogant, know it all not a very nice person! Speaks in latin tems to me.
If i have something to say, he says its wrong of me he knows what this is!
When i told him about you gyes he said i should be careful of you kinda people and false info they might give ya!!!  
“If you want me to be your doctor then you should listen to me!” he says.
Two minutes later.. he tells me how difficult it is to follow this syndrom around for how rare it is and asks me to be of assistance to him with all the info i get from you gyes... Huhmmm!!
 
Ok, my Neuro “specialiced” a prescription for me to have in the pharmacy, an open ticket!! So that i can get the spay and injections whenever i need to for my thang, When in cykle. really nice! This is what he offer me a year ago!  
This was someting he did for people of my kaliber.. (whatever that meant!Undecided)
At the same time he said he didnt want to put me on Prednisole and Verapamil said that if Imigram works theres no need to change.  
Prednisole and Verapamil could cause serious side effects. So we desided on Imigram!!!
 
This morning i called the Pharmacy to ask for my doze again but now they said i had to call my neuro because he didnt know who i was!  
(I live in Iceland... population of 29! Smiley
He said at one point that we were only three patients in Iceland that have CH. )
He instantly wants to stop this madness they said!
I called straigh away.  
 I had to tell him everything again. Who i was, my story once again. -i have told him a few times  
He tells me that he cant have this prescription open (which he offered me) because he could have law suits on his hands if something would go wrong for me.  
He wants to put me on prendisole and verapamil now for its best fto stop the attach!. Huhmmm....
 
I told him about our discustion for prednisole before, (i have lord parkinson white aswell, heart disorder of some sort) and told him that imigram really helps my f.. head!  
He said “Do you really want to be on this drug for the rest of your life?  Its not the worst syndrom ever, you know? You have to trust me im your doc! - With a -what do YOU know tone in his voice,  
i couldn take it anymore.  
I screemed at him that i would go see a better doc that would understand this and hung up on him!!! The fuck!!!  
I feel im always on step one with this dude like he has alzeimer or something! He always tryes to put me down, like i dont know jack shit when i feed him with your info´s!
its like we are always talking for the first time when we meet!
 
So now he has taking the "open Ticket" from the pharmacy and i will have to find new ways to let this life pass by. Huhmmm!!!
 
Im episodic and been 3. weeks into a Ch now,  
They last from six to ten weeks, each cykel. Two times a year, with mild shadows in beetween.
I have used imigram(trex) spray for my CH and i feel they help me the most.  
First i used imigram pills 100 mg and drank gallons of water and found relief doing that, i think! Then i got the injections and they always do their thing for the nights, usually get rebounces the following days though, so i try not to use the injections if i can.
For the last year or so i have used the spray only and that has given me the best result overall.  
 
The thing is i get hit from 3 to 7 times 24/7.  Over the worst period. (Ca three weeks ) I take up to 6 spay dozes a day  
(is that much -  What is much?) is it madness???
 
I called a new neuro today and i have an appointment next week... hope he has a better attitude toward CH, but i fear he will not.  
There are only three neuros in Iceland  
 
If someone knows how to deal with Neuros, i would love to hear about it.
 
thanks to you all!
Maggi
 
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maggi
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Re: doc problems
« Reply #1 on: Jan 5th, 2005, 1:23pm »
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I, too, hope the other neuro is good.
Good luck Maggi!
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Re: doc problems
« Reply #2 on: Jan 5th, 2005, 1:26pm »
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Sorry you're having such a bad time Maggi...here is a resource:
 
http://www.clusterheadaches.org/resources/dr.htm
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Re: doc problems
« Reply #3 on: Jan 5th, 2005, 4:21pm »
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Because you have so little time before seeing the new doc, I suggest you go to this site and print out this material. Take to the new doc and see how he reacts to it. If willing to consider this information it says he may be good for you.
  WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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Bob Johnson
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Re: doc problems
« Reply #4 on: Jan 5th, 2005, 4:51pm »
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Sometimes a reasonable general practicioner is better than an idiot specialist.  I can't remember the name of my doctor in Breidholt, it was a long time ago (and not for clusters) but I liked him.  I would say find another doctor.  I can see how a doc would be afraid to give you a blank check at the pharmacy, but can any doctor prescribe imigram and verapamil?
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Maggi Jons
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Re: doc problems
« Reply #5 on: Jan 6th, 2005, 6:39am »
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hi again
thank yo all so much!!!  
 
I have printed out everything i can find for the new doc, im also seeing my regular doc tomorrow.  
 
i desided to call my old doc up this morning to say how sorry i was yesterday,  for i was having attack and well tollerance is not the key word when in one!Undecided
Not sure why i called, maby because i wanted to have that relation ship there in case i had nothing!  
well he still had the same attitude like before when i said how sorry i was!
He said i definetly had to see him for now he thinks im turning chronic, or go see another doc that will give me imigram like he has done!
Can you believe this?  My condition has always been the same..  two times a year from 4 to 10 weeks or so, each cykle!!!
Like clockwork!!! Now he wants to try new methods, litium and well.. I told him this but he had the same attitude.. "if your not listening to me go see someone else!" I tryed to hold my breath!
 I told him we talked about oxygen last year and i wanted to try that instead of going into heavy meds hobout that? i asked.  
Well you have to find out on your own if someone will give it to you but im not calling them up, (the cancer departm. ) you have to call them yourself and see if they will help you, im not calling,  im sure they dont have it or wont give it to you!!!  but if they do you can referr to the doc that sent you. ( meaning it was not gona be him)
i gave up, thanked him and hung up.
 
 
p.s.
the open ticket at the pharmacy was only for imigram and nothing else and yes every doc can give me imigram if they have the files about me i geuss
now im reachinSmiley was it a neuro you saw in breidholt or a regular doc, Floridian?
 
many thanks again for your advices
 
maggi
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maggi
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Re: doc problems
« Reply #6 on: Jan 6th, 2005, 3:19pm »
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Maggi, I know of six other clusterheads in Iceland,  from the "Where Clusterheads Live" pages, LOL:
 
http://www.clusterheads.com/states/pages/Non_United_States/Iceland/

 
Maybe one or the other of them would know a better neuro.
PFNADs, Ueli                 smokin
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Re: doc problems
« Reply #7 on: Jan 6th, 2005, 3:54pm »
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Hi Maggi its nice to meet you!
Print off the O2 info and give it to both your normal doctor and your new doctor.  I'll play devils advocate for a minute and say that since your neuro doesn't see many people with CH it isn't going to be something he is going to spend time learning much about. (the prick!) I think for alot of us its always going to be the case that we know more about the condition than our doctors so we have to do our best to educate them. Obviously there might be reasons why one or another treatment might not work for you.. eg verapamil and low blood pressure but that is an individual thing. O2 is brilliant, its side effect free and (here is something you might want to remind your doctor!) MUCH MUCH cheaper than any other meds!! Why not try your local fire dept when getting hit and see if it helps? Give your doctor the info on the OUCH website and here and hopefully he will take a look.
Wishing you lots of luck in getting meds that work for you, let us know how you are getting on
Helen
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Maggi Jons
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Re: doc problems
« Reply #8 on: Jan 13th, 2005, 7:22am »
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hey gyes
 
thank you so much for your feedbacks
 
i went to a new neuro yesterday with all the info from this site. He seems nice, listens and talks Icelandic to me,, not latin Smiley  
 i got the feeling though that he was not dealing with many of us kind. I told him about my old doc and the problems i have had with him in the past and that i really wanted to be in control of my syndrom. without doing too heavy meds if possible. Imigram(trex) and melantonin as meds and then
that i wanted to try oxygen as it is probably the best abortive for us the beautiful once Smiley  
He had never heard of oxygen beforeas a treatment!
But he was willing to learn more about it. Then i told him about you gyes and he was very impressed. He had this question; Is the oxygen therapy something like a "Hybrid barred chamber?"  
Do you know if this is the same? I thought it was not because it is specified what works and what doesnt in the boards so i gave him the info about oxygen.
Hes was gona call the cancer department (definently the wrong word for it) and see if they have this unit i need.  
He did a new scan of my brain aswell, now the bottom of him i think he said, to rule out cronic sinus infection, sure it will turn out fine., but if so, the predisone sterods would make it worse!  
So much for my old doc ai?
 
Hes is gonna call today with the results of his investigations, scan, oxigen, melantonin ( we dont have it here, i have to apply to the drug board for it, so im trying to get as much info from u gyes and doc articles i have read from clusterville to get it prescripted to me here.  
Are there any reliable articles from docs u know of about the beauty of Melantonin that i can show to the drugboard?
 
i would love to have some feedback on the hybrid barrell or barred chamber, if youve heard of it as a treatment for us.
 
anyways, the Icelandic saga continues today when he makes that call Smiley
 
i have a third neuro lined up that i will visit next month if this one fails! So Neuros of Iceland.. Beware!Smiley
 
love and thanks for being here for me.
 
Maggi
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Re: doc problems
« Reply #9 on: Jan 13th, 2005, 8:29am »
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Maggi
The oxygen set up is simply a tank of pure oxygen with a regulator that can go as high as 15 liters per minute and a nonrebreather mask(The correct mask part is most important)
You simply put it on your face and breathe.
The Hyperberic chamber you are referring is used for among othe things to reacclimate deep divers or bent divers to sea level pressure.
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Bob_Johnson
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Re: doc problems
« Reply #10 on: Jan 13th, 2005, 8:34am »
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Print this message and give to your doc.
-------------
Neurol Sci. 2004 Oct;25 Suppl 3:S119-22. Related Articles, Links  
 
   
Cluster headache: symptomatic treatment.
 
Torelli P, Manzoni GC.
 
Headache Centre, Section of Neurology, Department of Neuroscience, University of Parma, Via Gramsci 14, I-43100 Parma, Italy. paolatorelli@libero.it
 
The clinical management of cluster headache (CH) attacks requires a symptomatic treatment that is rapidly effective in resolving or significantly reducing symptoms. First-choice drugs for the symptomatic treatment of CH are subcutaneous sumatriptan at a dose of 6 mg and 100% oxygen inhalation at a rate of 7 l/min for no more than 15 min. Sumatriptan acts by suppressing pain and the accompanying autonomic phenomena, with no substantial differences in its mechanism of action between episodic and chronic CH. The drug can be used for prolonged periods without loss of efficacy or safety and its side-effects are generally mild or moderate. Oxygen inhalation has a number of advantages over drug therapy: it is free from side-effects, has no contraindications--unlike sumatriptan, it can be used in patients with cardiac, cerebral or peripheral vascular disease and with kidney, liver or lung disease--acts rapidly and can be administered several times a day. Its disadvantages are that it is scarcely practical and may induce a "rebound effect". Sumatriptan nasal spray, zolmitriptan and dihydroergotamine nasal spray are scarcely effective. After the introduction of sumatriptan, ergotamine tartrate has been relegated to a secondary role in the symptomatic treatment of CH. Among other non-drug and topical drug treatment options, hyperbaric oxygen therapy and the intranasal application of 10% cocaine hydrochloride and 10% lidocaine in the sphenopalatine fossa have also proved effective.
 
PMID: 15549518 [PubMed - indexed for MEDLINE]  
 
------------------------------------------------------------------------ --------
 
 
2: Neurology. 2004 Aug 10;63(3):593. Related Articles, Links  
 
   
High oxygen flow rates for cluster headache.
 
Rozen TD.
 
Michigan Head-Pain and Neurological Institute, Ann Arbor, MI 48104, USA. trozen@mhni.com
 
PMID: 15304611 [PubMed - in process]  
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Maggi Jons
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Re: doc problems
« Reply #11 on: Jan 20th, 2005, 4:57am »
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hello friends and thanks!!
 
Im getting my Oxigen tank on mondaySmiley finally! whoohoo!!!
Cant wait to try!  
i have a strange feeling though, somekinda guilt!
Now i feel like i dont need it! Im not that sick!  
Why am i putting people to this much trouble for me?
Maby this is a normal feeling something to do with the difficulty in accepting cluster maby?  
well, just wanted to share with you, will tell you how goes.  
 
One question about Melantonin, do you know were i can print our  articles written by docs as one of the meds in treating us?  
They dont sell it here in Iceland but im told that i can apply to the drud board for it, but i would need all the info i can find about it so i can be on the safe side when i swee the doc wit the info
hope you can help me out with that one!
 
LoL
Maggi
 
 
 
 
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Re: doc problems
« Reply #12 on: Jan 20th, 2005, 6:06am »
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Curr Pain Headache Rep. 2001 Feb;5(1):83-91. Related Articles, Links  
 
   
Treatment and management of cluster headache.
 
Dodick DW, Capobianco DJ.
 
Department of Neurology, Mayo Clinic, 13400 E Shea Boulevard, Scottsdale, AZ 85259, USA. dodick.david@mayo.edu
 
Cluster headache is an uncommon yet well-defined neurovascular syndrome occurring in both episodic and chronic varieties. The most striking feature of cluster headache is the unmistakable circadian and circannual periodicity. Inheritance may play a role in some families. The attacks are of extreme intensity, of short duration, occur unilaterally, and are accompanied by signs and symptoms of autonomic dysfunction. In contrast to migraine, during an attack the cluster patient prefers to pace about. Attacks frequently occur at night. Although the pathophysiology of cluster headache remains to be fully elucidated, several seminal observations have recently been made. The medical treatment of cluster headache includes both acute therapy aimed at aborting individual attacks and prophylactic therapy aimed at preventing recurrent attacks during the cluster period. Agents used for acute therapy include inhalation of oxygen, sumatriptan, and dihydroergotamine. Transitional prophylaxis involves the short-term use of either corticosteroids or ergotamine derivatives. The cornerstone of maintenance prophylaxis is verapamil, yet methysergide, lithium, and divalproex sodium may also be employed. In some patients, melatonin or topiramate may be useful adjunctive therapies.
 
Publication Types:  
Review  
Review, Tutorial  
 
PMID: 11252143 [PubMed - indexed for MEDLINE]  
 
------------------------------------------------------------------------ --------
 
 
3: Cephalalgia. 1996 Nov;16(7):494-6. Related Articles, Links  
 
   
Melatonin versus placebo in the prophylaxis of cluster headache: a double-blind pilot study with parallel groups.
 
Leone M, D'Amico D, Moschiano F, Fraschini F, Bussone G.
 
Centro Cefalee, Istituto Neurologico Carlo Besta, Milan, Italy.
 
A fall in nocturnal plasma melatonin occurs in patients with cluster headache, suggesting that melatonin may play a role in the promotion of attacks. During a cluster period, we administered melatonin to 20 cluster headache patients (2 primary chronic, 18 episodic) in a double-blind placebo-controlled study of oral melatonin 10 mg (n = 10) or placebo (n = 10) for 14 days taken in a single evening dose. Headache frequency was significantly reduced (ANOVA, p < 0.03) and there were strong trends towards reduced analgesic consumption (ANOVA, p < 0.06) in the treatment group. Five of the 10 treated patients were responders whose attack frequency declined 3-5 days after treatment, and they experienced no further attacks until melatonin was discontinued. The chronic cluster patients did not respond. No patient in the placebo group responded. There were no side effects in either group. Although the response rate is low, melatonin may be suitable for cluster headache prophylaxis in some patients, particularly those who cannot tolerate other drugs.
 
Publication Types:  
Clinical Trial  
Randomized Controlled Trial  
 
PMID: 8933994 [PubMed - indexed for MEDLINE]  
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Maggi Jons
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Re: doc problems
« Reply #13 on: Jan 20th, 2005, 10:53am »
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hi gyes
 
thank you so much Bob for your info to print out for the board  
Now it will be much easier to apply for it Smiley  
will let know how goes.
 
thanks again
 
maggi
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