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Some Question Please (Read 5416 times)
MohamedwWaly
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Some Question Please
Feb 9th, 2014 at 11:37am
 
Hello iam new member here in forum but not in cluster headaches.
1st sorry for my weak english
Iam Male,31 Years , from Egypt , No smoking, no dunking, working in oil and gas plant
I have CH since 2000, in the first 5 years i get 2 cycles per year (every cycle about 3 weeks), after that i get only 1 cycle per year, but the last cycle which i started since 10 jan 2014 didn't ended until now.
i go to the doctor and he dive me (Topamax 100mg)+Inderal 80mg + Solupred 10mg all per day

But after i take this drugs for 20 days the attacks dercease from 2 or 3 per days to 1 attacks but the cycle not ended and in normal condition the cycle take only 3 weeks !!
IN attack a must take a O2 + Zomig tablet + Migranil (Phenobarbitone and Meprobamate)

Please i have some question:
1- is this normal? or i must change my doctor to change the drugs?
2- how can i increase the duration of CH free before the next cycle? by same treatments?
3-some time i feeling that the electromagnetic waves can start attacks( like cell phones), is it true or it's imagination?
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« Last Edit: Feb 9th, 2014 at 11:42am by MohamedwWaly »  
 
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Potter
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Re: Some Question From New Member
Reply #1 - Feb 9th, 2014 at 11:43am
 
What flow rate is your o2?

         Potter
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MohamedwWaly
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Re: Some Question From New Member
Reply #2 - Feb 9th, 2014 at 11:52am
 
Quote:
What flow rate is your o2?

         Potter

Sorry but i have no flow meter with my O2 bottle but my doctor say to me to take 20 min with 7 l/min flow ( i think ) but by experience all flow is with me is the same the pain will relieved after 10 min from O2 , but the attack will return again within 2 hours if i didn't takeZomig tablet + Migranil (Phenobarbitone and Meprobamate) with O2.

O2 Only is Temporary painkiller (Eaxmple: if i go to sleep and i get a CH attack after 1 hour , i will wake up and take  O2 only and then go to sleep again ,the attack will returned after 1 hour and i will wake up again and so on... total attack per night will per 7 or 8 with O2 only)  Embarrassed
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« Last Edit: Feb 9th, 2014 at 11:53am by MohamedwWaly »  
 
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Mike NZ
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Re: Some Question Please
Reply #3 - Feb 9th, 2014 at 2:07pm
 
Hi and welcome

7l/min is the flow rate. This is fairly low with most people getting much faster relief using a higher flow rate like 15l/min or 25l/min. Have you got a non-rebreather mask too as the standard mask or nasal canulas are useless for killing CHs.

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I've not seen any research pointing to electromagnetic waves triggering CHs, but I suspect there has not been any work done in this area.

However the main triggers people have are alcohol, stress (high / low / changes) and solvent fumes.
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Re: Some Question Please
Reply #4 - Feb 9th, 2014 at 3:39pm
 
In the beginning, I too wondered if radio waves had anything to do with my pain. I always used my cell phone on the right side which is also the side I get my CH. I wish more research existed on this. Who knows.
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Re: Some Question Please
Reply #5 - Feb 9th, 2014 at 4:03pm
 
I would suggest that you print out the PDF file, below, and use it to discuss treatment chanes with your doctor.

Topamax is not the best choice and many of our members reject it because of the mental confusion it creates. Print the following article. It is the most widely used and effective med to prevent attacks in use now.
====
Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
==================
In the long arricle which I asked you to print you will find other suggestions for meds to abort (stop) a Cluster attack.

Oyxen is widely used here, and it's effective, but the effect does not last as long as other medications. Another coinsideration is whether it's convenient to use (the problems of using the equipment when traveling or working).
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« Last Edit: Feb 9th, 2014 at 10:20pm by Bob Johnson »  
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Re: Some Question Please
Reply #6 - Feb 9th, 2014 at 4:17pm
 
I am in the middle of the mother of all cycles right now - and I don't have a cell phone.
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MohamedwWaly
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Re: Some Question Please
Reply #7 - Feb 9th, 2014 at 8:20pm
 
my doctor ask me to not playing playstation or watching action movie or horror movie and try to solve my problems quickly
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Re: Some Question Please
Reply #8 - Feb 9th, 2014 at 8:47pm
 
As an electronics tech for 20+ years, I would say that unless someone found a way to put theirself inside a microwave oven ( approx. 1000 watts of Rf )or got too  close to a live radio/tv transmitter,  would Rf pose a problem. Todays cellphones transmit at about 1/4 watt.
However eye strain has been noted as a trigger for some, perhaps that is what your dr.'s suggesting.

Best of luck
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« Last Edit: Feb 9th, 2014 at 9:44pm by erk »  
 
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Mike NZ
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Re: Some Question Please
Reply #9 - Feb 10th, 2014 at 12:26am
 
MohamedwWaly wrote on Feb 9th, 2014 at 8:20pm:
my doctor ask me to not playing playstation or watching action movie or horror movie and try to solve my problems quickly


It sounds like your doctor is in need of further training in CHs. What he suggests might possibly help with migraine it is unlikely to make any difference to CH.
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wimsey1
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Re: Some Question Please
Reply #10 - Feb 10th, 2014 at 8:33am
 
You are correct in stating O2 is an abortive and not a preventative. You can increase its effectiveness by improving your flow rate and adding a nonrebreather mask. But the search for an effective preventative goes on. What works for me may not work for you. Still there are many alternatives: D3 regimen, high dose verapamil, lithium, all three together....and the list goes on. It is trial and error I'm afraid. There is no cure. You can only hope to manage the beast. God bless. lance
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MohamedwWaly
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Re: Some Question Please
Reply #11 - Feb 14th, 2014 at 1:09pm
 
hello
i go to the doctor today and told him that the topamax is not good and the cycle not ended yet ,but he ask me not to stop the drugs and ask me to incremese the dose of topamax from 100mg to 150mg and decresce solupred from 10mg to 5mg and goon for 4 MONTHS !!....

i get way from this doctor and call the brother to get anther neuro doctor, then yesterday i goto anther one,he told me that he will start thr treatmenat from the begging and he give me 60mg solupred (this after 20 days of taking 10mg solupred) + Verapamil 240mg +Depakene Chrormo 500.+...

But he told me to not stop Verapamil + Depakene  FOR EVER...

Please What is your opinion?

Note:by taking topamax 20days: number of attacks decrease to from 3 per days to 1 per days but the cycle it longer than anyone before.
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Bob Johnson
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Re: Some Question Please
Reply #12 - Feb 14th, 2014 at 3:55pm
 
Please tell us where you live. Follow this sequence to put your location name by your name.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you posts a message.
================
I wonder if your doctor is willilng to accept come medical information from you which would give him some new ideas about treating you. The problem we face is not understanding the cultural attitudes of your doctors. It's sometilmes difficult for doctors to accept information from others. You will have to make that judgment.

But, print out the PDF file, below, and offer it to him. Tell us what his response is to your offer.
===
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MohamedwWaly
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Re: Some Question Please
Reply #13 - Feb 14th, 2014 at 5:01pm
 
Bob Johnson wrote on Feb 14th, 2014 at 3:55pm:
Please tell us where you live.
===

Damietta in Egypt
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MohamedwWaly
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Re: Some Question Please
Reply #14 - Feb 25th, 2014 at 12:51pm
 
hello
thank you clusterheadaches.com ==> very useful site
it has been about 10 days pain free, i change my doctor to take a recommended treatments which i read them here.
but i have only a one question.

in past cycles when it finished i have no pain in where, but this cycle i have sometime pain above ear- like the attachment image


this is normal?
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Bob Johnson
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Re: Some Question Please
Reply #15 - Feb 25th, 2014 at 2:12pm
 
Pain that feels like it's in the eye is very common with Cluster. It's not reallyl a problem with the eye, so don't be concerned.

But this this suggests that the present cycle of Cluster has not stopped yet. Continue using the preventive medicine and don't stop untill several weeks have past since our last Cluster attack.
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Re: Some Question Please
Reply #16 - Feb 25th, 2014 at 2:15pm
 
MohamedwWaly wrote on Feb 25th, 2014 at 12:51pm:
thank you clusterheadaches.com ==> very useful site


Yes it is!

MohamedwWaly wrote on Feb 25th, 2014 at 12:51pm:
but i have only a one question.

in past cycles when it finished i have no pain in where, but this cycle i have sometime pain above ear- like the attachment image
this is normal?


You are only 10 days into pain free time so it may be that your cycle isn't completely under control yet but the medicine you are taking is blocking the headaches.

What are you taking?

When my cycles end on their own without medicine they stop completely and suddenly.  If I use medicine to break the cycle, it feels as if the cycle is still there but the meds are blocking the pain.  This is probably what you are experiencing, stay on the meds, don't miss a single dose.  Good luck!
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MohamedwWaly
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Re: Some Question Please
Reply #17 - Feb 25th, 2014 at 4:11pm
 
jason1212 wrote on Feb 25th, 2014 at 2:15pm:
What are you taking?

1st doctor give me following:
100mg Topiramate (Topamax)
10mg Prednisolone (solupred)
Anti-Inflammatory

i take them 20 days,the number of attack decrease but not stopped , then doctor ask me to increase the Topiramate to 150mg. but i stop taken it and goto anther doctor which give me the following:
60mg Prednisolone (solupred)
Verapamil 240mg SR
valproic acid and Sodium Valproate 500mg X 2 per day (depakine chrono 500 mg)
Anti-Inflammatory

then the attack stopped after that  Smiley
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Re: Some Question Please
Reply #18 - Feb 25th, 2014 at 4:34pm
 
Sounds like something's working or you've reached end of cycle...

The real test will be when your prednisone taper runs out...

Please keep us posted.

V/R, Batch
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« Last Edit: Feb 25th, 2014 at 4:34pm by Batch »  

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MohamedwWaly
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Re: Some Question Please
Reply #19 - Feb 25th, 2014 at 5:55pm
 
Batch wrote on Feb 25th, 2014 at 4:34pm:
Sounds like something's working or you've reached end of cycle...

The real test will be when your prednisone taper runs out...

Please keep us posted.

V/R, Batch

Thank you
as my doctor said to me to take dose for Prednisolone as following:
3 Days X 60mg (one dose) ===> finished
2 Days X 50mg (one dose) ===> finished
2 Days X 40mg (one dose) ===> finished
2 Days X 30mg (one dose) ===> finished
2 Days X 20mg (one dose) ===> finished
2 Days X 10mg (one dose) ===> i will start this dose tomorrow 
then stop

I will post after i finished all

Note: my random test for blood suger level increase from 110 to 145 after starting Prednisolone with 3 days.(i asked for it and it's normal)
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Re: Some Question Please
Reply #20 - Feb 26th, 2014 at 12:30am
 
MohamedwWaly wrote on Feb 25th, 2014 at 4:11pm:
60mg Prednisolone (solupred)
Verapamil 240mg SR
valproic acid and Sodium Valproate 500mg X 2 per day (depakine chrono 500 mg)
Anti-Inflammatory


This sounds like a solid regimen, I agree with Batch, we'll see when the Prednisone wears off.  I'm betting you're going to have lots of pain free time!  Cheesy

I remember when I first started Verapamil, it was like magic!   
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Re: Some Question Please
Reply #21 - Mar 10th, 2014 at 7:27pm
 
Hello
untill now i am in pain free for 3 weeks
iam taking daily:
Verapamil 240mg SR
valproic acid and Sodium Valproate 500mg X 2 per day (depakine chrono 500 mg)

Thank you all
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