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(Message started by: hisham_t on Oct 3^rd, 2006, 10:43pm)

Title: I am new here
Post by hisham_t on Oct 3^rd, 2006, 10:43pm

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 :(

Title: Re: I am new here
Post by Sean_C on Oct 3^rd, 2006, 10:52pm

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..............................

Title: Re: I am new here
Post by hisham_t on Oct 3^rd, 2006, 11:27pm

Thx Sean_C for your reply and your valuable informations
take care and wish you the best :)

Title: Re: I am new here
Post by georgej on Oct 3^rd, 2006, 11:53pm

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

Title: Re: I am new here
Post by BB on Oct 4^th, 2006, 1:17am

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 ? ;) 8)

Title: Re: I am new here
Post by hisham_t on Oct 4^th, 2006, 10:00am

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 :)

Title: Re: I am new here
Post by Bob_Johnson on Oct 4^th, 2006, 11:09am

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

Title: Re: I am new here
Post by Jonny on Oct 4^th, 2006, 9:30pm

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!

Title: Re: I am new here
Post by tanner on Oct 5^th, 2006, 1:47am

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

Title: Re: I am new here
Post by hisham_t on Oct 5^th, 2006, 10:03am

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

Title: Re: I am new here
Post by BB on Oct 5^th, 2006, 11:26am

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

Title: Re: I am new here
Post by MJ on Oct 5^th, 2006, 12:02pm

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.

Title: Re: I am new here
Post by Yorky on Oct 5^th, 2006, 12:32pm

on 10/05/06 at 10:03:51, 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

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

Title: Re: I am new here
Post by prcole18 on Oct 5^th, 2006, 12:37pm

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.

Title: Re: I am new here
Post by hisham_t on Oct 5^th, 2006, 2:19pm

Thank you all for the advices , i am going now to buy Red bull canes [smiley=laugh.gif]

Title: Re: I am new here
Post by chewy on Oct 5^th, 2006, 8:14pm

What dosage of verapamil are you taking. Might want to consider upping it a bit.

Title: Re: I am new here
Post by hisham_t on Oct 6^th, 2006, 7:27am

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 ?

Title: Re: I am new here
Post by chewy on Oct 6^th, 2006, 7:30am

What I think is 80 of verapamil is useless.

The average is 480 and some use as much as 940 mg.

Up the verapmil.

Title: Re: I am new here
Post by hisham_t on Oct 6^th, 2006, 9:29am

Thx chewy, i will increase the dose then .. i hope it helps
wishing pain free for all of you friends :)

Title: Re: I am new here
Post by chewy on Oct 6^th, 2006, 3:20pm

I hope you are not self medicating without professional consultation.

Title: Re: I am new here
Post by Jonny on Oct 6^th, 2006, 5:05pm

on 10/06/06 at 15:20:01, chewy wrote:

I hope you are not self medicating without professional consultation.

Hes a doc, right? :P

Title: Re: I am new here
Post by chewy on Oct 6^th, 2006, 8:25pm

Physician heal thyself is not always good advice.

Title: Re: I am new here
Post by hisham_t on Oct 6^th, 2006, 9:39pm

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.

Title: Re: I am new here
Post by Callico_Kid on Oct 6^th, 2006, 9:46pm

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

Title: Re: I am new here
Post by hisham_t on Oct 6^th, 2006, 9:52pm

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

Title: Re: I am new here
Post by hisham_t on Oct 7^th, 2006, 1:37am

i wanted to add that the no. of attacks increased in this last week , is that a good sign or bad sign for the cycle to end ?

Dear callico, i am sorry to hear that yours CH changed from episodic to chronic , tell me how that happened and there was any signs or changes in your cycle type before it turned to chronic?

Title: Re: I am new here
Post by Jonny on Oct 7^th, 2006, 2:38am

on 10/07/06 at 01:37:46, hisham_t wrote:

i wanted to add that the no. of attacks increased in this last week , is that a good sign or bad sign for the cycle to end ?

From my years of reading here, an increase in attacks for an episodic usually means that the end of cycle could be near.

Thats just what I have read, I wouldnt know because I was chronic for 31 years and then they just went away.

Title: Re: I am new here
Post by Callico_Kid on Oct 7^th, 2006, 3:30am

there was no sign of any changes in my HA's. They just started as usual, and didn't end. Since going chronic about three yrs ago I have had a couple of short respites, but never over two weeks in length. Actually, it makes it a little easier in that I don't look forward to a time with dread of their return. I can just deal with them on a day to day basis.

I hope your increase in activity is a sign of the ending of your cycle as Jonny mentioned.

Jerry

Title: Re: I am new here
Post by E-Double on Oct 7^th, 2006, 9:18am

on 10/05/06 at 10:03:51, 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

Absolutely!!!

You just have to try to remain positive and to live life the best you can while trying to not let CH interfere.

Glad you found us.

Title: Re: I am new here
Post by georgej on Oct 7^th, 2006, 9:37am

I cannot speak for other episodics, but the typical pattern for me is a rapid ramping up in intensity and frequency over the first couple of weeks, a peak during which the headaches are most frequent and most intense, and then a gradual diminishment in frequency and intensity, until they fade away and disappear. It sounds to me as if you may have reached the peak of your cycle. In that sense, it may be a sign that your headaches will begin to subside fairly soon.

Just one episodic's opinion.

Best wishes,

George

Title: Re: I am new here
Post by hisham_t on Oct 7^th, 2006, 1:41pm

Thx folks, i hope it will come down soon it's really affecting my work as a surgeon , my patients even look at me and say " what happen to your eyes doc.?"
or "You look sick and tired today doc " stuff like that
I look like a zombi at work , lack of sleep , irritability & bad mood .

Title: Re: I am new here
Post by wildhaus on Oct 7^th, 2006, 1:47pm

Salam aleikum

I am sorry you get cluster but welcome,

Michael

Title: Re: I am new here
Post by hisham_t on Oct 7^th, 2006, 10:52pm

Hi again folks,

can somebody please brief me about the kip scale and i also wanted to know what is meant by mushroom seeds are they kinda of narcotics or " hash "?

Title: Re: I am new here
Post by Callico_Kid on Oct 7^th, 2006, 11:12pm

Hi Dr.

the Kip scale is named for the CH sufferer who developed it as a means of a baseline for the level of pain suffered during an attack. It is based on definable levels of suffering to give a more objective evaluation of the pain level rather than a subjective analysis by a sufferer. Check the kip scale button on your left of the screen for definition.

When we talk of mushroom (or shrooms) we refer to what are commonly called "magic mushrooms" in the drug culture. They are an halucinogenic (sp?) agent, psylocybin, that anecdotally has been very effective in not only relieving the pain at the time, but will often stop a cycle or if used before the cycle begins will actually abort it. At the present time Harvard is trying to do a study of the use of psylocybin as a medical means of dealing with CH. At the present time psylocybin is illegal for use in the United States. I don't know about Egypt. When they speak of spores (seeds) it is for the growing of ones own mushrooms. If you are interested in looking into it further I would refer you to clusterbusters.com. They will have more information there than on here, although many of us here at CH.com have found relief through use of shrooms.

Hope this helps. You ask good questions. Keep up the good work. Knowledge is about the only way to keep the beast at bay, or at least manageable.

Jerry

Title: Re: I am new here
Post by BB on Oct 8^th, 2006, 3:01am

Hello Hisham,

I am taking up your offer on giving us advices related to ENT surgery. Thank you very much for your most generous offer.

There have been a few questions on the Board about septal/sinus surgery and possible relief for CH. Also there have been talk about sphenopalatial pain relating to CH. Just wondering what is your view on them?

Thanks heaps and painfree wishes to you.

Annette

Title: Re: I am new here
Post by Poli on Oct 8^th, 2006, 6:55am

on 10/07/06 at 22:52:06, hisham_t wrote:

Hi again folks,

can somebody please brief me about the kip scale and i also wanted to know what is meant by mushroom seeds are they kinda of narcotics or " hash "?

Hisham, some of us have found great relief with the alternative treatment. All the information is here
http://www.clusterbusters.com/index.html
Can you ask your Neuro if he have ever heard about this?
Saludos
Poli

Title: Re: I am new here
Post by Yorky on Oct 8^th, 2006, 9:50am

on 10/06/06 at 21:52:42, hisham_t wrote:

in my experiances..the pains decrease in strength..and the hits less frequent..when i am coming to the end off cycle.

Title: Re: I am new here
Post by hisham_t on Oct 8^th, 2006, 1:12pm

I am happy to have all these replies and i feel that i am surrounded by good friends , thx for all of you folks.

Dear Callico_Kid , i will ask about those seeds and that chemical material here in Egypt and if it is legal or not and i hope soon they legalise it as medication against our beast. I will also ask my neurology about it Poli

Dear Annette , about your question regarding septal/sinus surgery and possible relief for CH.
Chronic sinus diseases and deviation of the nasal septum causes headaches by them selves due to irritation of the anterior and posterior ethmoid nerves which are branches from the trigiminal nerve which is always involved in the cluster headache syndrome, so definetly the surgery will help or at least reduce the attacks or sometimes can change a chronic sufferer to episodic . This actually happend to me , i used to have bad sinus disesase and i used to suffer from sever headaches almost daily 15 years ago , after the endoscopic sinus surgery i was pain free for 3 yeras then started my CH so may be it changed it from chronic to episodic which i am suffering from nowadays.

Quote:

Also there have been talk about sphenopalatial pain relating to CH. Just wondering what is your view on them?

Sphenopalatine pain is from the sphenopalatine nerve which is a branch of the Vidian nerve , also on of the branches of the trigiminal nerve and there is many papers about injecting or cuting this vidian nerve to relief that kind of pain and it's also mentioned that it can work for cluter headache as well , but no full study was done on this issue for CH patients

Take care folks and please don't hesitate to ask me any thing you like , we are here to share and exchange experiences and ideas
God bless you all and keep us pain free with a hope of a new treatment to kill the beast for ever ::)

Title: Re: I am new here
Post by jon019 on Oct 8^th, 2006, 3:34pm

Hi hisham,

i wanted to add that the no. of attacks increased in this last week , is that a good sign or bad sign for the cycle to end ?

Was episodic for 24 years, cycle is now changed and could be becoming chronic or just way different. when episodic, cycles were 6-8 weeks on and off for the entire year. cycle started slowly then ramped up quickly, plateaued for 4-5 weeks then slowly diminished. hits in middle were more frequent and intense. first to leave were the night hits while sleeping, then the morning hits and finally the day time. always had one killer hit just at the end of cycle that was incredibly bad. always prayed for those anyway because it meant cycle ending.

only you will know your own cycle. based on my case only, it appears you are mid cycle.

red bull has been very effective, i am on verapamil (480or higher mg/day, divided doses) has worked well in past but appears losing effectiveness. also have o2 with clustermask, VERY helpful.

welcome, sorry you have to be here, it is a wonderful place with some incredible people

Regards

Title: Re: I am new here
Post by hisham_t on Oct 10^th, 2006, 2:20pm

Here i am again,

2 days ago i increased my verapamil dose from 80m/day to 200mg in devided doses and i was attacks free for the last 2 days , only shadows , but today i had only one attack kep 7 and had to take imitrex inj.
I am in my 5th week of the cycle now and i hope the beast will start to leave me in peace.
My neuroligist was scared to increase the dose for me but i took your advices folks, monitored my blood pressure and i hope it's working, i feel kinda dizzy and sleepy sometimes after i increased the dose but i think that is normal with the verapamil

Title: Re: I am new here
Post by Richr8 on Oct 10^th, 2006, 10:05pm

Hi Hisham,
Glad to meet you, but sorry it had to be here. I just wanted to weigh in on your previous questions. My cycle typically ramps up to a peak over about 4-5 weeks and then gradually diminsihes in frequency and intensity for another few weeks. It sounds to me like your cycle is winding down atleast following my experience. I've done pred tapers on my last three cycle which significantly shorten the cycle, but generates many side effect which are just plain unacceptable to me. I'll be enduring my next cycle med free, unless you count Oxygen, and will probably pursue one of he alternative treatments.

best of luck to you on your cycle ending.

Title: Re: I am new here
Post by hisham_t on Oct 11^th, 2006, 9:05am

Thx Richr8 for your wishes and i hope as you said that my cycle is going to an end . I recomend that in your next cycle to start with verapamil , i agree with you that prednisone has lots of side effects which i suffered from as well when i used it in the last 3 cycles .
I wish one day there will be a good treatment for all of us cluster heads and we can enjoy our life pain free..

Title: Re: I am new here
Post by hisham_t on Oct 22^nd, 2006, 8:43am

Hi Folks,

It is my 6th week and the CH is almost leaving me in peace after an attack of bad flu the beast almost dissapeared , only slight weak shaddows . I felt a better after i reached 240mg Verapamil/day or may be i was reaching the end of my cycle .
I wush pain free for all clusterheads , i had a real depressing 6 weeks which affected me more than any other time and i hope after that i flu i resume my normal activity and get back to my normal life

My best regards to everyone :-*

Title: Re: I am new here
Post by georgej on Oct 22^nd, 2006, 9:06am

Sorry to hear that you contracted the flu, but glad to hear that your CH has improved.

It sounds as if your cycle is about finished. Congratulations, and best wishes.

George

Title: Re: I am new here
Post by Charlotte on Oct 23^rd, 2006, 3:43pm

on 10/10/06 at 14:20:58, hisham_t wrote:

Are you taking sustaiend release or immidiate release?

I dont know the equivalence of direct release to sustained release?

Charlotte