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hisham_t
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I am new here
« on: Oct 3rd, 2006, 10:43pm » |
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Let me introduce my self , i am male 46 ENT surgeon , egyptian and i have been suffering from CH since 12 y. but not properly diagnosed except 8 y. ago.
My colleague , neurologist put me on prednisolone 60mg for 5 days then taper down and verapamil but still after i started tappering down the prednisolone , i get the attack daily once or twice , adding to that 2 to 3 shaddows and the attack is only controlled by Imitrex S.C Injection , not the spray " does'nt work" and the oxygen if i don't take it in the proper time .. forget it .
let me know dear CH bodies ,do you have symptoms free days during the episode and how long the episode period range .. for me it is about 5 to 6 weeks 
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| « Last Edit: Oct 3rd, 2006, 11:25pm by hisham_t » |
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Dr. Hisham Tawfik
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Sean_C
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I'm episodic Hisham, my cycles last between 6 to 12 weeks, with 1 to 2 per day, then ramp up to 6 plus per day along with intensity and duration, before tapering back down to close out the cycle. I have never had a cluster free day during a cycle either.
Have you tried the clustermasx? Click on the link below for more details.
http://homepages.nildram.co.uk/~tritech2/clusterx/
Sean..............................
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| « Last Edit: Oct 3rd, 2006, 10:57pm by Sean_C » |
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hisham_t
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Re: I am new here
« Reply #2 on: Oct 3rd, 2006, 11:27pm » |
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Thx Sean_C for your reply and your valuable informations
take care and wish you the best 
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Dr. Hisham Tawfik
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George_J
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Re: I am new here
« Reply #3 on: Oct 3rd, 2006, 11:53pm » |
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Welcome, hisham_t.
Like Sean, I'm also episodic. It's interesting that you say you started at 12--I started at 13 years of age. I'm 52 now. My cycles last approximately 6 to 8 weeks, but they have decreased in frequency as I've gotten older.
No, I do not have any symptom-free days during a cycle. If I do not have a full-blown headache on a particular day, I will invariably experience some shadows. Nearly all my attacks take place at night, during the first REM cycle of sleep.
I do not medicate for CH. I've tried oxygen in the past and it didn't work, but I've since been told that it was not properly administered. I fully intend to try it again during my next cycle. It is a very effective treatment for aborting a headache for many of us.
Again, welcome. Please ask any questions you'd like, and we welcome your thoughts and comments as well.
Best wishes,
George
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| « Last Edit: Oct 3rd, 2006, 11:56pm by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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BB
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Re: I am new here
« Reply #4 on: Oct 4th, 2006, 1:17am » |
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Hi Hisham
I am sorry to hear that you get cluster but welcome.
I am a GP from Australia and a supporter for my DH who has CH. I have many friends and colleagues who are Egyptians.
MY DH is episodic and this is his first diagnosed cycle. Previous cycles 3 and 6 years ago were short and mild and he could cope with the headaches with OTC meds.
Since this cycle started however and he is into week 10 now, he has not had an attack free day yet and he is on a full range of preventive meds. The number of attack has gone from up to 8 a day to 1 or 2 though, which now can be aborted fairly easily with imigran or oxygen. Its the heavy shadowing thats annoying for him .
Hang in there, keep asking and painfree wishes to you.
Annette
PS: So now that you can ask us about CH , may we ask you about ENT stuff ?  
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hisham_t
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Re: I am new here
« Reply #5 on: Oct 4th, 2006, 10:00am » |
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Thx georgej & BB for your feed back and it really helps when there is people around you and they can understand exactly how you feel
I think this is my 4th week of the cycle and what really affects me are the shadows which makes me feel down mostly all day and prevents me from most of my usual activites 
P.S : Sure BB you can ask me about any thing related to ENT Head and neck surgery ..be my guest
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Bob_Johnson
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Re: I am new here
« Reply #6 on: Oct 4th, 2006, 11:09am » |
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Three items which you can use easily:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
=====================
www.headachedrugs.com [Following information from this site.]
HEADACHE 2006 IS HERE!
This 64-page booklet has cutting edge ideas and opinions from Dr. Robbins about the meds and non-med therapies for migraine, chronic daily, and cluster headache. There is also a section on headache in children and adolescents.
Major revisions have been done, including the latest on meds and therapies for refractory, difficult to treat headaches including options for when nothing is working. There are also new sections on Bipolar, ADD, Insomnia, and Personality disorders, as well as Biofeedback. Click here for the complete table of contents. (Requires: Adobe Acrobat Reader - A free program)
Headache 2006 is the latest edition, based upon Dr. Robbins' 2 bestselling books. You will receive this latest work by Dr. Robbins and also help to support this non-commercial website, for only $16.95 (includes shipping).
To order, call 847 480-9510 (Mon. thru Fri. 9 to 4 CST) and order with a credit card (Visa, MasterCard, and Discover accepted), or send check (or Visa info) for $16.95 to:
Robbins Headache Clinic
1535 Lake Cook Rd.,
Suite 506
Northbrook, Ill.60062
You can also fax your order with your credit card information to: 847 480-9044.
====================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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| « Last Edit: Oct 4th, 2006, 11:10am by Bob_Johnson » |
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Bob Johnson
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Jonny
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Re: I am new here
« Reply #7 on: Oct 4th, 2006, 9:30pm » |
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Welcome Hisham,
Im sorry you had to find us, but im glad you did!
Theres is more information here than anywhere in the world about CH!
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| « Last Edit: Oct 4th, 2006, 9:31pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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tanner
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Re: I am new here
« Reply #8 on: Oct 5th, 2006, 1:47am » |
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I just want to add my welcome Hisham, I am very happy to have you aboard both for your sake and for ours!
Peace to you and yours.......Tim
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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hisham_t
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Re: I am new here
« Reply #9 on: Oct 5th, 2006, 10:03am » |
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Hi again ,
I just wanted to inquire about something from you guys
does CH affect the mood and give a feeling of depression through out the cycle ? and if yes any suggestions that might help
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Dr. Hisham Tawfik
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BB
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Re: I am new here
« Reply #10 on: Oct 5th, 2006, 11:26am » |
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Yes it does, it changes the whole personality sometimes.
I can only suggest from my own experience and the experience of my DH that you make sure you eat and sleep well and surround yourself with positive things and people and pray a lot, meditation also helps.
Take care and painfree wishes to you.
Annette
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MJ
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Re: I am new here
« Reply #11 on: Oct 5th, 2006, 12:02pm » |
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Hi hisham Welcome.
Untill recently I had never found a treatment to help the CH itself.
So I chose to treat the symptoms you mention between the hits. A mild stimulant like the energy drinks can help with this.
I had used ephedrine (not pseudophedrine) in very low dose 2mg and for me this took care of those issues. Being a medical person I am sure that you are aware of the issues whith ephedra at higher doses and I am not reccomending it but worked for me. Perhaps a similar formula may help with the worn feelings.
There is a delicate balance and here only "minimal" doses work. Higher doses can have an adverse affect.
The feelings of depression and exhaustion goes hand in hand with CH.
For the last many years I used nothing else and this helped me to accomplish what could be done with a clear head.
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| « Last Edit: Oct 5th, 2006, 12:07pm by MJ » |
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Yorky
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Re: I am new here
« Reply #12 on: Oct 5th, 2006, 12:32pm » |
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on Oct 5th, 2006, 10:03am, hisham_t wrote:Hi again ,
I just wanted to inquire about something from you guys
does CH affect the mood and give a feeling of depression through out the cycle ? and if yes any suggestions that might help |
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hi hisham...i find that when you are in cycle and shadowing, youv got to try not to think too much about the pains(i know that its virtually impossible)but i find the more i worry/or feel down...then the stronger and more frequent the ch becomes..good luck
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today is a gift.....thats why it is called the
present.
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prcole18
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Thank god for Imigran Injections!
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Re: I am new here
« Reply #13 on: Oct 5th, 2006, 12:37pm » |
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Just want to say welcome Hisham,
Im sure you'll find out all you need to know & get the help you need from the people using this site.
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hisham_t
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Re: I am new here
« Reply #14 on: Oct 5th, 2006, 2:19pm » |
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Thank you all for the advices , i am going now to buy Red bull canes 
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Dr. Hisham Tawfik
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chewy
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What dosage of verapamil are you taking. Might want to consider upping it a bit.
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hisham_t
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Re: I am new here
« Reply #16 on: Oct 6th, 2006, 7:27am » |
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Hi Chewy,
i am taking 80 mg of verapamil daily devided in 2 doses , i found in one of the articles that i can reach up to 120 mg but i am concerned that it might cause hypotension as i am a normotensive person ..what you guys think ?
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| « Last Edit: Oct 6th, 2006, 7:28am by hisham_t » |
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Dr. Hisham Tawfik
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chewy
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What I think is 80 of verapamil is useless.
The average is 480 and some use as much as 940 mg.
Up the verapmil.
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hisham_t
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Re: I am new here
« Reply #18 on: Oct 6th, 2006, 9:29am » |
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Thx chewy, i will increase the dose then .. i hope it helps
wishing pain free for all of you friends
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Dr. Hisham Tawfik
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chewy
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I hope you are not self medicating without professional consultation.
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Jonny
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Re: I am new here
« Reply #20 on: Oct 6th, 2006, 5:05pm » |
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on Oct 6th, 2006, 3:20pm, chewy wrote:| I hope you are not self medicating without professional consultation. |
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Hes a doc, right? 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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chewy
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Physician heal thyself is not always good advice.
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hisham_t
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Re: I am new here
« Reply #22 on: Oct 6th, 2006, 9:39pm » |
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don't worry chewy , first i increased the dose only to 160mg devided into 2 doses and i know that is still safe and tom. i will discuss that with my collegue the neurologist who's taking care of my case and i will check my blood pressure as well ..
Sometimes doc. makes worst patients.. 
i appreciate your concern.
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Dr. Hisham Tawfik
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Callico
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Re: I am new here
« Reply #23 on: Oct 6th, 2006, 9:46pm » |
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Welcome aboard.
I used to be episodic, (about 20 yrs), and then went chronic. During cycle I cannot remember a time I was PF until the cycle ended. I agree with upping Verap. I was up to 960/day until it quit working at all. You might consider using Lithium in conjunction with it. The Lithium helped with the depression for me, but I did not like some of the other side effects from it.
Depression is an issue all of us have to deal with. Some more than others. That is one reason they are called suicide headaches. One of the most important things to remember is to deal with the moment, and not to borrow trouble before it comes. I also find this site is one of the best things to deal with it because I always find someone else that has much worse problems than me, and I try to find someone else I can encourage or help. That helps me deal with depression more than anything else.
BTW, Red Bull works wonders for me, especially dealing with strong shadows. Slam it fast at first sign of an attack.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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hisham_t
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Re: I am new here
« Reply #24 on: Oct 6th, 2006, 9:52pm » |
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I had an attack 2 hours ago and i did'nt want to take the imitrex inj. because i had 2 already today and the attack lasted for about 3 hours , i was out of o2 and tried ice, cold water , cold air ..nothing worked .
i am in my 4th week of the cycle with all the preventive meds. does the peack of pain increases or decreases at the end of the cycle ? any feed back from your experiences my friends
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Dr. Hisham Tawfik
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