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WELCOME! (Read 35469 times)
nichjfw
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Re: WELCOME!
Reply #400 - Dec 12th, 2017 at 4:43pm
 
Found the Multi Vitamens on line, ordered.
Looks like I found the conversion ratio I need though I'm not allowed to post the link because I have less than 10 posts on the site....Peter510 posted it in the D3 Question thread.
I think I'll stay on the D3 regimen through the winter.

The only question that remains is how to deal with allergy season, and it looks like adding Benadryl to the regimen at that point might be what's needed. A lot of you guys have more experience than me and I would greatly appreciate any of your input.

Nick
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Peter510
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Re: WELCOME!
Reply #401 - Dec 13th, 2017 at 5:43am
 
Nick,

Firstly allergy season.

Bear in mind that allergy season can be spring and autumn. People donít generally realise that leaf mould in autumn can be as bad as pollen.

The recommendation is 50mg Benadryl (or the generic version: Diphenhydramine) daily. This can be taken at 2 X 25mg, morning and evening, or 1 X 50mg after your evening meal.

It is important to note that 50mg will make you drowsy, so if you choose that option, donít drive after you have taken it.

Secondly, staying on the D3 Regemin all Winter:

I cannot say this strongly enough...Take it all year round, year after year...permanently. It should become part of your daily routine.

If you have to restart it when each bout hits, you will lose vital weeks getting you 25(OH) level back up.

Peter.
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nichjfw
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Re: WELCOME!
Reply #402 - Dec 13th, 2017 at 12:01pm
 
Thanks for the response Peter,

I gotta say it's pretty incredible to be talking to people who know and have experienced CH's. It's been a long long haul by myself dealing with the headaches and all the crap that goes along with them. I guess it's a good thing they are so rare...but it sure makes you feel alone.
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« Last Edit: Dec 13th, 2017 at 12:02pm by nichjfw »  
 
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Peter510
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Wexford. Ireland
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Re: WELCOME!
Reply #403 - Dec 13th, 2017 at 12:11pm
 
Nick,

Youíre never alone.

This is a great place to get information, but it is also a great place to get support and understanding.

If ever you need to just vent, donít hesitate.

Let us know how youíre getting on with the D3.

Peter.
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Batch
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Re: WELCOME!
Reply #404 - Dec 13th, 2017 at 3:08pm
 
Hey Nick,

A belated welcome to CH.com.  Peter has addressed your questions with excellent answers and given you the best advice to stay on this regimen year-round.  There are so many health benefits made possible by taking this regimen, I've had my entire family taking it since 2012 and none of them are CHers.

Be sure to start the accelerated vitamin D3 loading schedule by taking 50,000 IU/day for 12 days.  This is the fastest way of elevating your serum 25(OH)D concentration up into the therapeutic range where most CHers experience a significant drop in the frequency, severity and duration of their CH from an average of 3 CH/day down to 3 CH/week... or they experience a complete and lasting cessation of CH symptoms.

If you've not experienced a significant reduction in the frequency of your CH by day-4 of this loading schedule, several CHers have found starting a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day and at bedtime has worked wonders in helping vitamin D3 to prevent their CH. 

Again as Peter pointed out, Benadryl will make you drowsy so don't drive.  If you need to drive, take the Benadryl as Peter suggested once you're home for the day.  If there's no response to the Benadryl after 5 days, discontinue as an allergic reaction may not be the problem.  In this case, I increase my vitamin C intake from 2000 mg/day to a 1000 mg every four hours throughout the day and before bed.  Rationale, an infection could be the culprit and vitamin C has excellent antibiotic and antiviral properties.

Be sure to drink at least 2.5 liters of water a day and to see your PCP for the 25(OH)D lab test once you've been on this regimen for 30 days.  You can find additional information in the anti-inflammatory regimen treatment protocol at the following VitaminDWiki link:

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

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Jeler
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Re: WELCOME!
Reply #405 - Jun 14th, 2019 at 8:39am
 
Well I hope I'm posting this in the correct message board. 65 year old male who just got diagnosed yesterday in a Neurology Clinic with CH!  I've been having the episodes for close to 15-20 years now, mostly spring & fall. My GP prescribed sumatriptin 5 years ago and it helps but fatigued after it kicks in, normally just a 25 mg dose. I'm fortunate to have such a loving and caring wife who puts up with my numerous attacks. My nurse practitioner has started me today on 40 mg taken in the AM for 5 days. So I'll see how that goes. Hopefully I'll have positive results, because like many folks on this board, it's difficult to cope with CH much less find a cure.
More later,
Jeff in Iowa
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Mike NZ
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Re: WELCOME!
Reply #406 - Jun 14th, 2019 at 9:42pm
 
Hi Jeff and welcome

You're posting in the right place.

It sounds like you've been given sumatriptan tablets since you've quoted the dose as 25mg and 40mg. The tablet form isn't great for CH since it can take 10+ minutes or more for it to be absorbed and become active, which is less than ideal with a CH. What works best is either the injectable or nasal spray versions which can take effect in a few minutes.

You can also use oxygen from an oxygen cylinder (not a concentrator) using a high flow rate (15lpm with higher being better) via a non-rebreather mask. This too can work in a few minutes plus you can use it as often as needed. There is a lot of oxygen info at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

You didn't mention any form of preventive like prednisone, verapamil, lithium, etc. These can work to limit how many CHs you get. Normally you start with prednisone as a short term preventive (not to be used for too long due to risks around joint damage) whilst you also start with a longer term preventive to give it chance to build up to an effective dose.

Also look how many of us are using vitamin D3 as a very effective preventive with many people going CH pain free for multiple years (including me). Lots of info at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Read up here and you'll learn a lot. Ask any questions you have.
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Jeler
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Re: WELCOME!
Reply #407 - Jun 15th, 2019 at 6:06am
 
Mike,

Thank you for the response and all the detailed information you provided. At first I thought I had entered my info on the wrong message board, great to hear back from you.

I should have proof read my initial message before pushing the send button. Yes I was initially prescribed 25 mg. sumatriptan by my family doctor. How ever after visiting the Neuro clinic my practitioner prescribed the 40 mg. 5 day dose
of  Prednisone. (this is what I omitted) Yesterday was my first  day I started  it and immediately noticed a decrease in CH's.
However up at 3 am with a mild episode that an Ice pack and a sinus flush with a netti pot took care of. Previous episodes where frequent (every 3-4 hrs. and severe).

Have a great day and thanks again for the info.
Jeff in Iowa
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Jeler
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Re: WELCOME!
Reply #408 - Jul 3rd, 2019 at 12:16pm
 
Hello again,

Prednisone seemed to reduce my CH attacks time wise and the severity, but I disliked the way the anxiety I felt. 40mg.3x/day.  2 weeks later the episodes have picked up again.
Nurse practitioner in Neuro dept. started me on verapamil on 6/26/19,  80mg 3x/day. Haven't noticed any change in episodes, but had them at 12:30AM, 3:00AM & 6:30AM last night ( 7/3/19). Numerous Ice packs, 4 cold showers tucked away on the tiled floor in our master bath. The episodes were literally back to back and wanted to die. Spoke to nurse at neuro this morning and she can not prescribe any more sumatriptin. Only get 5-50mg/month. That last me maybe 3 days and I snap them in 1/2.  I'm approaching my wits end on these monsters.
Jeff
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Hoppy
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Re: WELCOME!
Reply #409 - Jul 4th, 2019 at 8:43pm
 
Hi Jeler, 80mg of verapamil 3x/day is a rather low dosage when it comes to treating CH's, the norm is 360-480mg/day and some folk have to go as high as 1000mg/day before seeing any relief, but you need to get a regular ecg when on these doses, so, maybe talk to your Neuro/Doctor about this.

Cheers Hoppy
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Cluster Headache News... Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
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Jeler
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Re: WELCOME!
Reply #410 - Jul 6th, 2019 at 8:12am
 
Hoppy

Thanks so much for the information. I called into Neuro last wednesday asking for more help before heading to ER for relief. Later in the day they called my Pharmacy and increased my dose of verapamil to 100 mg. 3xday. I have noticed some benefit, but also discovered it crucial to space the doses out as near to 7-8 hours between doses.

I'll be visiting a cardiologist on July 8th (Monday) for an ECG.

Thanks again for the information, nice to know this message board is alive. Also very reassuring to hear from others dealing with CH.

Jeff
Iowa!
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Mike NZ
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Re: WELCOME!
Reply #411 - Jul 7th, 2019 at 4:00am
 
A while ago I did a really details post with everything you ever wanted to know about verapamil - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Have a read and any questions, just ask.

It also sounds like you're on the sumatriptan tablets which aren't too useful for CH as they take 20+ minutes to take effect. We normally use either the injections or the nasal spray as they take effect in around 5 minutes or less, which is a huge difference with a CH.

Also look at how we use high flow rate (15lpm or higher) oxygen via a non-rebreather mask (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register). It can make a huge difference as you can use it as often as you need it, plus normally a whole lot cheaper with less side effects.
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