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shadia

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Help for return from hell
Jun 6^th, 2016 at 7:06pm

Hi i am back since it's spring my c.h. sprang back... my question is and was last year to ,when you get 6-7 k6 and higher ch and you have imitrex in injection and you can only take 12 mg per day ,when do you decide to take the injection, i never know ...do you take it when you start feeling that the crisis is coming and use it to prevent or when you pulling your hair out!!! My O2 is coming tomorrow and i am on Batch's vit D regimen. Thank you for your response . Cry

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Bob Johnson

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Re: Help for return from hell
Reply #1 - Jun 7^th, 2016 at 11:10am

Imitrex is fast acting but has a shorter active life than other meds in its class.

Waiting to see if an attack is "really" developing before taking it leads to an impaired response. So, take at the first sign of a developing attack to get best response.

IF your attacks tend to have a long life, talk to your doc about meds in this faimily which are slower to actu fully but which have a longer effective life span.

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Bob Johnson

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shadia CH.com Junior Offline I Love CH.com! Posts: 76 Farnham Quebec Gender:	Re: Help for return from hell Reply #2 - Jun 9^th, 2016 at 7:23am thank you so much for responding ... yes my attacks do seems very long up to 3 hours sometimes ,so alternating with O2 and immitrex these couple of days helps a it but not 100 % good , will make a appointment with my pdoc soon.
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Bob Johnson

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Re: Help for return from hell
Reply #3 - Jun 9^th, 2016 at 2:31pm

Reading your message, I missed that you are using the imitrex to prevent attacks. NO, NO! It's only to abort the attack.

If your attacks are long lived, other meds in the imitrex family can be used. They have a longer life. Talk to the doc.

Talk to you doc abou reularly using a preventive med during the times when you are in an active period.

If your cycles come with brief intervals beween them, then using a preventive all the time is a good move.

Print the file, below, and give to your doc.

(Does he have experience/taining in headache disorders? Ask him.)

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« Last Edit: Jun 9^th, 2016 at 2:37pm by Bob Johnson »

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(96 KB | 16 )

Bob Johnson

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shadia CH.com Junior Offline I Love CH.com! Posts: 76 Farnham Quebec Gender:	Re: Help for return from hell Reply #4 - Jun 11^th, 2016 at 4:28pm i dont know if i understand correctly i need a abortive and a preventative medication? My attacks are long and bad shadows in between ,it seams like i am always hurting . Thank you very much for the documents i will read and try to understand better ans see my doc.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Help for return from hell Reply #5 - Jun 11^th, 2016 at 5:06pm shadia wrote, and i am on Batch's vit D regimen. Thank you for your response You must continue to take this for life, and hopefully it will be the last you see of the beast. Hoppy
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shadia

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Re: Help for return from hell
Reply #6 - Jun 12^th, 2016 at 7:36am

it' me again i do wish someone would answer my question because i am in hell for the past two days i use all my imitrex s/c 12 mg plus 3 x times O2 and nothing helps everyday , seems like the shadows never leave ... i do take Batch's regime but if for now it does not work should i see my doc and ask for a preventative. Can you take imitrex as as a abortive and verapamil as a preventative for example .. this is just my second season going trough this hell , I never saw a headache specialist i am on a waiting list. So you are my life line and what you suggest i ask my pdoc. Thank you .

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thierry

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Re: Help for return from hell
Reply #7 - Jun 12^th, 2016 at 4:21pm

Hi Shadia,
it sounds like you could do with Oxygen(O2).
click on the yellow tab on the left of your scren that says "oxygen info".
Also try to get yourself some O2. In the meantime you could hyperventilate as much as you can, that will get more oxygen into yourself.
You say you're on Batch's D3 regimen, are you doing loading doses so that your D3 levels can climb quickly?
You could put 50000 iu D3 in the corner of your mouth and let it melt there. That will quickly put D3 in your body and might just give you relief.
All the best

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Help for return from hell Reply #8 - Jun 12^th, 2016 at 7:53pm Shadia, What you need to ask your doctor for is Verapamil 360-480mg/day, and a Prednisone taper dose 7-10 days until the Verapamil kicks in. Hoppy
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maz

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Re: Help for return from hell
Reply #9 - Jun 13^th, 2016 at 5:28am

Shadia, I fully understand how confusing it all is - been there, done that.

Use verapamil as a preventative - take it for the duration of your cycle. Take D3 for ever. It may take a few weeks to get going but well worth perseverance.

Use O2 the very moment you feel the signs of an attack and you may find the attack turns into a non event - but you do have to be quick. I find it doesn't work so well when the pain has reached the higher levels.

For the attacks that get past both these, then go for the injection.
But, do you know you can split those injections so you can get 2 or even 3 doses out of one. On the left of your screen is a blue tab "imitrex tip" - near the top. It's fully explained there how to do it.
I do it all the time and find 3mg always works, even for the really bad ones. It does mean using the needle twice, so you need to be very careful not to allow the needle to become contaminated. Alternatively you can discharge the injector into an ordinary syringe - the type diabeticas use, and inject with that. Send me a PM if I can help more.
Maz.

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shadia

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Re: Help for return from hell
Reply #10 - Jun 13^th, 2016 at 10:50am

Thank you so much Maz ... i understand that i don't have a preventative that is my main problem ,i just have the abortives... i am waiting for my doc to call me back today .. you have been a great help!! And i do use the imitrex tips like you said but i imagine not having the preventative medication did not help to manage my attacks.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Help for return from hell Reply #11 - Jun 13^th, 2016 at 8:19pm It is hard to understand why so many doctors do not understand that treating CH is a combination of both abortives and a preventive, with so many just focusing on one of them. How are you getting on with the vitamin D3? You've mentioned in previous posts that you've been using this.
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Hoppy

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Re: Help for return from hell
Reply #12 - Jun 14^th, 2016 at 5:15pm

Mike NZ wrote, It is hard to understand why so many doctors do not understand that treating CH is a combination of both abortives and a preventive, with so many just focusing on one of them.

It's because the majority of doctors have very limited knowledge or none at all when it comes down to treating CH's. They tend to think treating a CH is like treating any other headache by just taking a pill, and in our case, a 50mg Imigran/Imitrex pill, or if your lucky, auto injectors.

Hoppy

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jon019

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Re: Help for return from hell
Reply #13 - Jun 14^th, 2016 at 7:00pm

...which is why someone in the family will invariably say to a newcomer..."get thee to a headache SPECIALIST"....and all too often that advice is met with confusion or resistance because "I already have a GP or neuro"....

In my case I went thru 7 of those who absolutely knew less about CH than I did....until I FINALLY found a specialist neuro...in whose presence I almost cried because she "got it". It is so VITALLY
important to have someone like that on your side that I wish it was bannered somewhere on the site......

Best

Jon

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The LARGE print giveth....and the small print taketh away. Tom Waits

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shadia

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Re: Help for return from hell
Reply #14 - Jun 15^th, 2016 at 7:45am

i finally got my verapamil prescription the doctor started me on 180 mg long acting because i have low blood pressure... i hope it kicks in soon , i use my imitrex injection and oxygene and vitamine regimen .. i am on my 15th day of hell i dont know how anybody can live with chronic clusters..omg. Thank you all for your replies.

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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: Help for return from hell Reply #15 - Jun 15^th, 2016 at 12:52pm to get your D3 levels up quickly, you could take 50000 iu D3/day for the next 4 or 5 days. All the best
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shadia CH.com Junior Offline I Love CH.com! Posts: 76 Farnham Quebec Gender:	Re: Help for return from hell Reply #16 - Jun 15^th, 2016 at 4:05pm ok i was taking 50 000 once a week and 10 000 the rest of the week , i will take 50 000 for 4-5 days staight . thank you
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: Help for return from hell Reply #17 - Jun 15^th, 2016 at 5:35pm sounds good. This too shall pass All the best
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Batch

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Re: Help for return from hell
Reply #18 - Jun 16^th, 2016 at 12:58am

Hey Shadia,

It's been a while... like three or four years since we last exchanged posts... A lot has happened since then that may help you send the beast on the run instead of having it jumping ugly at you too many times a day...

Thierry has you pointed in the right direction with 50,000 IU/day loading doses for 5 to 7 days... That's the fastest way to elevate you serum 25(OH)D concentration.

What we've also discovered is that allergic reactions can trigger a relapse of CH even with a 25(OH)D up above 80 ng/mL. Allergic reactions trigger a flood of histamines that will make just about any CH preventative and abortive ineffective.

If this is the case, we need to take a first-generation antihistamine like Diphenhydramine (Benadryl). It crosses the blood brain barrier to block H1 histamine receptors and this stops the histamine reaction that triggers CH.

25 mg of Dyphenhydramine (Benadryl) every 12 hours or 50 mg with the evening meal/before bed for a week to 10 days is usually sufficient. Just be careful not to drive while taking Benadryl as it will make you drowsy.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Jun 16^th, 2016 at 12:59am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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thierry

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Re: Help for return from hell
Reply #19 - Jun 16^th, 2016 at 2:36am

Hey Batch, welcome back. I hope you had a great time away and fishing.

Shadia,
below is a link to a antihystamine like the one Batch talks about in his post above.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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is very cheap and in your territory (continent)

it's like the one i use

Al the best

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shadia

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Re: Help for return from hell
Reply #20 - Jun 16^th, 2016 at 7:16am

Well hello Batch my savior from last season , i had seen the post about the benadryl , did take it for a few nights but did not seem to make it better , made my nose all congested, but since i did not have any preventative medication maybe that is one of the reason it did not help. My last vit D result was 117 , so i will up the dosage for a few days. Nice seeing you here .

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