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Who is who here to the newcommers (Read 106124 times)
CH Wife
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Re: Who is who here to the newcommers
Reply #800 - Jul 30th, 2014 at 8:52am
 
Hello all,
My name is Lacie and my husband Brian has been suffering from CH or type of CH for 4 years now. The only reason we know what we do is because of me diving online to figure out what was happening to him. I am also a nurse so that helps. However we have only recently figured this out as the last 6 months have been extremely brutal for him. First 3 years he only had maybe 10 episodes in a 6 mo period(spring/summer). This last year it has really kicked it up. We live in surrounding Tulsa,OK area and he is needing to find a neurologist or any reputable doctor that deals with these in our area.

He is a smoker but does not drink alcohol ever. He knows he needs to quit smoking but it's hard for him too with No end in sight. We have tried prednisone, indomethacin, oxygen, antihistamines, and he is on verapamil 240mg twice daily for heart rate also. Prednisone helped it seemed at higher dose 20-40mg daily but he would have to stay on that and not taper off. (And who is to say he wasn't in a remission period during that time)He ended up with torn calf muscle so we have tried to back off of the steroids but it's almost like we have just pissed this mother off and now it's just hitting him like anywhere from 2-10 times a day (steroids not helping now) and in most cases like a few hours ago he had extreme ones literally back to back for last 3 hrs and I gave him fioricet Benadryl indomethacin and he finally dozed for maybe 30 mins and now he is back up with constant mild moderate one.   He is getting so frustrated because they just won't stop. He mentions all the time about swallowing a bullet during a bout. I know pain can make people do things they normally wouldn't so I take what he says to heart. 

We need someone that understands what he is going through and can offer advice on methods of relieving them. I haven't tried the nasal sprays so that's my next phone call today with his dr.
Thanks for reading, Undecided
Lacie
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CH Wife
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Re: Who is who here to the newcommers
Reply #801 - Jul 30th, 2014 at 9:19am
 
Hello all,
My name is Lacie and my husband Brian has been suffering from CH or type of CH for 4 years now. The only reason we know what we do is because of me diving online to figure out what was happening to him. I am also a nurse so that helps. However we have only recently figured this out as the last 6 months have been extremely brutal for him. First 3 years he only had maybe 10 episodes in a 6 mo period(spring/summer). This last year it has really kicked it up. We live in surrounding Tulsa,OK area and he is needing to find a neurologist or any reputable doctor that deals with these in our area.

He is a smoker but does not drink alcohol ever. He knows he needs to quit smoking but it's hard for him too with No end in sight. We have tried prednisone, indomethacin, oxygen, antihistamines, and he is on verapamil 240mg twice daily for heart rate also. Prednisone helped it seemed at higher dose 20-40mg daily but he would have to stay on that and not taper off. (And who is to say he wasn't in a remission period during that time)He ended up with torn calf muscle so we have tried to back off of the steroids but it's almost like we have just pissed this mother off and now it's just hitting him like anywhere from 2-10 times a day (steroids not helping now) and in most cases like a few hours ago he had extreme ones literally back to back for last 3 hrs and I gave him fioricet Benadryl indomethacin and he finally dozed for maybe 30 mins and now he is back up with constant mild moderate one.   He is getting so frustrated because they just won't stop. He mentions all the time about swallowing a bullet during a bout. I know pain can make people do things they normally wouldn't so I take what he says to heart. 

We need someone that understands what he is going through and can offer advice on methods of relieving them. I haven't tried the nasal sprays so that's my next phone call today with his dr.
Thanks for reading, Undecided
Lacie
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Re: Who is who here to the newcommers
Reply #802 - Aug 27th, 2014 at 7:55am
 
Hi it's me Barry.and my ugly mug..ha,ha..Chronic Sufferer since 88..new to the site since aug.20th or so..anyways,im glad I found this place.i thought I was the only one..wow..and a lot more ladies on here than I ever thought possible.amazing..sorry for the large pic.but it's how it came out.ha,ha...God Bless ya..Bear R.-
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« Last Edit: Aug 27th, 2014 at 8:03am by Bear R.- »  

Chronic..!!.
 
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Re: Who is who here to the newcommers
Reply #803 - Oct 28th, 2014 at 1:25pm
 
Hi,
this is my first time on this blog. I am a mother to a 14 year old boy that is dealing with cluster headaches. We are from Parker, CO area.
My son is experiencing intense cluster headaches for the first time. He has had these before, but not on this level.  He is missing so much school right now and i fear for his education. I am so helpless i wish i could take his pain. We are just starting treatment with propranolol and imetrex, but it doesn't seem to be working yet. He gets these headaches at night then wants to sleep all day. If there is any suggestions for help with explaining to the school and any specialist's in our area it would be appreciated.  Embarrassed
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Re: Who is who here to the newcommers
Reply #804 - Oct 28th, 2014 at 3:31pm
 
Hi and welcome

First off, you've found a place where everyone really does understand CH as we are all either supporters or we have it ourselves.

Propranolol isn't a commonly used preventive for CH, however it is an effective preventive for migraine (I use it for mine). For the imitrex has he been given the tablets or the injections / nasal spray? If the tablets then this sounds like his doctor is just applying migraine treatments to CH, which won't work as well.

For CH, the most common preventives are verapamil, lithium and topomax, with oxygen and imitrex injections being the more common abortives.

I'd strongly suggest working with a headache specialist to ensure that your son gets the right treatment for him.

I'd also suggest you read up all you can find here on the site as you'll learn so much.

Do look at the info on using vitamin D3 as a preventive too, it has helped over 80% of people using it (I've been CH pain free for over 1000 days on it).
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Vic (Reston VA)
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Re: Who is who here to the newcommers
Reply #805 - Jan 5th, 2015 at 5:53pm
 
My name is Vic. I just found this site. My response at reading some of the posts was to tear up and get extremely misty-eyed — This feels a whole lot better than the misty-eye I get almost every night (going on 5 weeks now) from CH. I'd rather not have CH, but finding this site has suddenly lifted a small weight of "uniqueness" off of me.

Thank You.

I am almost 60 years old, married male living in Reston Va. This bout of CH is the 3rd in my life — I am extremely fortunate that so far I have only had these every 8-11 years... bouts last 3-4 weeks. The bad news is this time I am deep into my 5th week (bummer). On your "KIP" scale I would say I am a 9 or a 10. I generally have an extremely high tolerance for pain, I have worked through these bouts before — but I will say that the pain is akin to being tortured by a demented demon brandishing a sharp and dull weapon that ranges in size from pin to sword ...and apparently he is is a professional who is fully versed in his dark arts. I will admit that I have contemplated a terminal option, but I don't swing that way — "it ain't gonna happen", I will push through this if it drains my body of tears and nasal fluids.

Because I only have had CHs 3 times in my life for a total of a few hundred individual headaches spread over those 3 periods, I must say I feel fortunate.  The relief I feel after the pain finally releases its tentacle grip must be similar to unexpected salvation in after avoiding surrendering to the worst. If you are here in this space, you probably are my pal...

Questions:

1)  Do other CH sufferers also have a history of Herpes? (I have been outbreak free for 10 years)

2)  Have other CH suffers attempted a hemispheric seasonal change? (i.e., mine always come in the US Winter months; leading me to consider a panic-trip to Australia...)

3) ...Does O2 really work? (freaking sumatriptan leaves me with a hang over)

Best wishes and hang on... nothing seems to compare with the pain of CH, so there is a bright side (sorry, just being stupidly philosophical for a moment).
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Re: Who is who here to the newcommers
Reply #806 - Jan 5th, 2015 at 5:58pm
 
1. No
2  No
3  Yes

                       Potter
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Re: Who is who here to the newcommers
Reply #807 - Jan 5th, 2015 at 9:01pm
 
Vic,

You and I are very similar.  I'm in the middle of my 3rd episode since November of 2013 and I am now 61.

I feel your pain.

Mark
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Mike NZ
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Re: Who is who here to the newcommers
Reply #808 - Jan 5th, 2015 at 9:59pm
 
Vic (Reston VA) wrote on Jan 5th, 2015 at 5:53pm:
1)  Do other CH sufferers also have a history of Herpes? (I have been outbreak free for 10 years)

2)  Have other CH suffers attempted a hemispheric seasonal change? (i.e., mine always come in the US Winter months; leading me to consider a panic-trip to Australia...)

3) ...Does O2 really work? (freaking sumatriptan leaves me with a hang over)


1 - Probably no different to what non-CH people have.

2 - Interesting question, not sure if there are too many people with seasonal related CH who have switched hemispheres to see if it makes their CH skip. As to a rapid trip to Oz, well I've no idea how that could affect you, although you could also consider NZ too.

3 - Yes, O2 works amazing, with 25lpm and a non-rebreather mask I can kill off a CH in about 5 minutes and I can use it as often as I want.

How do you handle your CHs?

Have you got a preventive, something like verapamil or lithium, to cut down how many CHs you get?

Have you anything to abort a CH, something like imitrex injections?


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Re: Who is who here to the newcommers
Reply #809 - Jan 15th, 2015 at 11:58am
 
Hi everyone,

My name is B. aka ClusterMe  Wink

I am 38 and and had my first CH when I was 18. At the time I honestly thought it was the stress of becoming an adult and working a full time job that was giving me these daily excruciating headaches....or maybe it was that I was a VERY young newly wed and I just couldn't take the new life I gave myself.

Back then nobody either knew or told me about CH's. I knew something wasn't right though because in my mind people couldn't possibly live like this?!

I went to a specialist and they did MRI etc. Nothing. The doctor said some people get heacdaches and nobody knows why and he gave me a drug called Nortriptyline and the headaches got better but the drug side effects were less than great.

After a decade on this drug they took me off due to the damage it could have on the heart. They then put me on Prozac and other drugs like xanax and buspar thinking I just had anxiety to which I used up until two months ago. Funny how the docs just assume and give. NO DOC EVER TOLD ME THEY WERE CH'S!

After months of my own research I now understand my situation and have another doctor visit next week.

I'm skeptical on the visit because it seems there is no cure but I want another MRI just in case.

I am trying natural remedies.... so if anyone has any please let me know.   Roll Eyes
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Re: Who is who here to the newcommers
Reply #810 - Jan 15th, 2015 at 3:47pm
 
Hi Vic

1.  No

2.  Yes - didn't work

3.  Yes - works like a dream
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Re: Who is who here to the newcommers
Reply #811 - Jan 31st, 2015 at 7:50pm
 
My name is Eric, 26 year old male. I've been suffering from cluster headaches since 17. My headaches occur daily(EVERY day), and last about 1-2 hrs on average.

I currently use oxygen to treat my headaches, and it does work really well, but I am getting SO sick of it. So sick of the routine of running off to the oxygen tank, there I  am again trapped by the headaches. Also the pain may return after a while when I stop using oxygen. Another thing is the oxygen that I get doesn't always last me, and it's already expensive enough. I found myself in the ER twice recently despite having my tanks, they ran out. I feel like oxygen is a Band-Aid, and a Band-Aid that can only be helpful sometimes, because if I'm not near it, what good is it to me?

Aside from oxygen I've used olmitriptan, and zolmitriptan, both of which work incredibly well, and actually let the headache pass with very little to no pain whatsoever. After the headache I am guaranteed to be free(I never have more than one headache a day). The only catch there is this medicine costs about $200/week! There is also the fact that it's not good for you to take daily.

Finally I have tried pain killers. Despite what others say, these work really well for me. The only problem is, we need VERY strong pain meds for our headaches, so you'd need morphine or something. When I have had access to these, they've helped immensely. If you crush up a pill it should hit you fast. Right when my headache is getting it's worst the pain killer hits and takes over. I only wish I could have these prescribed to me.

I am currently trying to get some psilocybin cubensis (magic mushrooms) after reading countless testimonials about how beautifully they work. It seems to be the only thing that will get rid of the headaches  for a prolonged period of time.  LSD also does the same, it has to do with serotonin. So anyways I am really optimistic about it, and just waiting for tomorrow as I've been told my friend can get some!  Smiley The nice thing is apparently you need no where near the typical dose, so for those afraid of the effects there is no need to worry. I will update ASAP and let you guys know how it worked.
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Re: Who is who here to the newcommers
Reply #812 - Jan 31st, 2015 at 8:40pm
 
Hi Eric and welcome

How are you using oxygen? We have found that the best combination is a non-rebreather mask and a high flow rate of at least 15lpm with more better. Using 25lpm I can kill my CHs off in about 5 minutes.

You can read a lot about using oxygen at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Have you got a preventive, something like verapamil, lithium or topomax, which can cut down how many CHs you get?

Have you tried using imitrex (also known as imigran or sumatriptan)? The injected or nasal spray versions can be pretty effective, again killing off a CH in about 5 minutes or so.

With pain killers, if you are using them more than 3 days a week or 9 times a month you're almost certainly getting rebound CHs just from the pain killers. Plus there are issues like dependency (all too easy with narcotics from personal experience just following my doctors instructions).
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Re: Who is who here to the newcommers
Reply #813 - Feb 10th, 2015 at 11:17pm
 
Hello, My names Louise. I'm 25 and currently going through only my 2nd cycle of CH. I got diagnosed last February and had a 5 week cycle. I had a terrible reaction to sumatriptan and by the time a neurologist suggested anything else I was pain free and it all kind of got brushed under the carpet.

However last Saturday it came back and to be honest I had forgotten about it seeing as I had only had one bout previously. I understand all CH sufferers are different so I just wanted to share with you my cycle.
Starting Saturday early hours of the morning I had a 10/10. Lasted over an hour and paramedics were called as I was at a friends and she didn't know what was happening. All I could do was assume it was my CH coming back.
Since then I have had every other day 10/10 headaches early hours of the morning but only one attack on that day. The rest of the day is consumed by shadows that can reach a 6/7.

I have a brilliant GP who prescribed me oxygen at home which makes me pain free in 5-10 minutes using a flow rate of 15 litres per minute. To help my shadows I down a red bull as soon as I feel it come on and the either stops the pain in its tracks of at least makes it manageable.

Being episodic, I do feel lucky and my heart goes out to all you chronic suffered and eposodic sufferes who have it worse than me. For a while I thought I was alone with my weird pattern of headaches and not having 6-8 attacks a day but now I've just realised I'm a lucky one to not suffer to the extremes some of you do. I have been so educated through this website and OUCH UK, having spent my nights from 2-4am after a bad one reading through this (I struggle sleeping after a 8-10/10).

I have my fingers crossed that this cycle lasts the mere 5 weeks it did last time but who knows with this deadly condition. All I can say is oxygen and red bull have giving me hope managing this condition and I'm not so scared of it any more.

Louise
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Re: Who is who here to the newcommers
Reply #814 - Feb 12th, 2015 at 5:01pm
 
Greetings from Ansonville NC.  I started having these headaches when I was 17.  They usually come in the spring, but sometimes Fall.  When I have these episodes, I fell like jumping off a bridge.  I have been to the EL so many times, it is not funny.  When they give me oxygen, the pain goes away.  It's like someone flipped a switch and cut the pain off.  I am 50 years old now.  Will they ever stop?  This is the worst pain in the world!
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Re: Who is who here to the newcommers
Reply #815 - Feb 25th, 2015 at 3:15pm
 
My name is Christina. I'm 24 and have been getting attacks episodically since I was 12. I have only had one year between now and then that I didn't get a cycle. I have no idea why, nothing special about that year. My headaches come in the fall or winter, but always last till spring. I don't keep a headache journal anymore but I do rate each attack just out of habit on a 1-10 scale. I'm an artist so I just mark it down in my sketchbook. I get about 2-6 attacks a day with maybe a day off here or there during my cycle. My cycles last about 3 months usually. Sometimes more if they hit me in the fall. They always end in March.
I did the Dr thing for a while. Family practitioner then specialist after ignorant specialist. I finally found a competent neurologist who was able to give me some answers but sadly no actualy help in regards to relief. I have been on my own since I was 16 with no insurance so I stopped going to the children's hospital and haven't had imitrex in 5 years. I have never tried oxygen. I'm not opposed, just have never had an affordable oppurtunity.
Like I said I am an artist. Holding down a normal 9-5pm is hard for me with this disorder so I usually get a new job every year. Employers have little patience for a person who has to take 20-40 minute breaks at random intervals in the day.
That's me in a nutshell. Here for support and to support everyone out there suffering such as me.
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Re: Who is who here to the newcommers
Reply #816 - Feb 25th, 2015 at 5:25pm
 
Hey Christina,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way.

You're going to receive a lot of help... so stick around and don't be afraid to ask questions.

Take care,

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, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: Who is who here to the newcommers
Reply #817 - Feb 25th, 2015 at 6:54pm
 
Hi Christina
I'm so glad you found us, although sorry that you had to. As you mention insurance I assume you live in America.
You have found a good neuro but it surprises me that you say he has not offered anything to relieve the pain. The good news is that there are plenty of remedies that, while they don't cure the condition, they do take away the pain. The bad news is, it's all expensive. (I'm very fortunate to live in the UK and our good old National health service takes care of it).

The most popular drugs are, Imitrex, Verapamil, and oxygen. Verapamil is a preventative which takes a couple of weeks to start working but then most people get relief. Imitrex comes in pills, nasal spray and auto injections. The pills are very slow acting so not much help. The nasal spray is a little better, but the injections are fantastic and will relieve the worst CH in about 5 - 7 minutes. There are other drugs of the same type (triptans) should imitrex not suit you. Then there is oxygen - my best friend. This will also abort a bad one in a short time, for me, about 15 minutes. BUT, this is important, you must use it correctly for it to work. You must have a flow rate of at least 15 liters per minute (more is better) and a non re-breather mask. If you get either of these wrong it will not be effective.

The injections can only be used twice per day, so I use oxygen at home and save the injections for when I'm out. I NEVER leave home without 2 in my bag.If you could find a way to afford them the only breaks you will need to take at work are coffee breaks. Just a quick trip to the ladies room with your injection and you come out a few minutes later feeling normal again. Probably no one will even know.

It's not much help now if you are in cycle but one way to get round the cost is to get a few on a regular basis when you are not in cycle. That way you are ready for when it strikes, and it helps to spread the cost when you need them.

Something cheap to try - At the very first sign of pain - don't wait till it ramps up, you need to be quick, chug down a redbull really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do - redbull, monster, rockstar etc. This does not work for every one (it didn't for me) but many people on these boards swear by it, so worth a try.

You have also recieved a reply from Batch. Send him a PM and ask him to explain the vitamin D3 regime that he has discovered and worked on. Drug free and cheap.Hundreds of us have used this regime with good effects. He's a great guy and has helped so many of us. He should get a medal.

Hope this helps. Come back and let us know how you are. We are always here to lend an ear, and advise where we can.
Maz.
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Re: Who is who here to the newcommers
Reply #818 - Mar 23rd, 2015 at 9:55am
 
Hi I am Andy and i am from the Richmond,Va area.
I am a 38 almost 39 yr old married male that has been suffering with Cluster Headaches since i was about 18 yrs old. I usually have episodes every 3-5 yrs. Which i am having them right now.They last anywhere from a couple of weeks to a month and a half. My dad also has Cluster Headaches and has had them for as long as i can remember. My Primary doc has me on Verapamil to try and prevent them from occurring.My Neuro gave Sumavel dose pro but i have yet to use it because by the time i got into see the Neuro 3 yrs ago the Clusters had disappeared. I'm going to be calling the Neuro today and see if they will call me in a new prescription since mine is 3 yrs expired.
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Re: Who is who here to the newcommers
Reply #819 - Apr 27th, 2015 at 1:14am
 
Hey Repohellbilly...  Not sure where you're coming from Widgeon but it appears as though Rspohellbilly that you may be vitamin D3 deficient.   

If I'm correct, a simple call on your PCP or neurologist can confirm this with a test of your 25(OH)D serum concentration;  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status. 

The normal 25(OH)D serum concentration is 30 to 100 ng/mL ( 75 to 250 nmol/L).  Unfortunately most physicians will interpret 31 ng/mL as a normal value...  That may be so for rickets, but it will not do squat doodle for cluster headache as CH'ers, we need 60 to 80 ng/mL in order to stay pain free.

If you’re in doubt about starting this regimen read Zd10’s post in the following link:

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

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

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The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet:

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

If you can’t get to a Costco outlet, a CH’er in the UK has found a source for all the needed supplements at iherb.com.  See his post at the following link for details on how to order them over the Internet:

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

The vitamin B 50 is not shown.  You’ll need a 3-month course of vitamin B 50 to handle any deficiencies among the seven B vitamins.  Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 2:1 ratio.  Many have found 400 mg/day sufficient.

Most CH'ers who have started this regimen in the last year and had their 25(OH)D results come back below 30 ng/mL, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking the maintenance dose of vitamin D3 at 10,000 IU/day...  The accelerated vitamin D3 dosing schedule follows:

On day one, take the entire regimen with 10,000 IU/day vitamin D3 and two of the Omega-3 Fish Oil liquid softgel capsules along with one each of the remaining supplements the first day.

If there's no allergic reaction to these supplements (very rare), take 20,000 IU/day vitamin D3 for the next two weeks along with the rest of the regimen.

In addition, for the first two weeks take a 50,000 IU loading dose (ten of the 5,000 IU vitamin D3 softgels) once a week on top of the daily dose for two weeks.  The day of the loading dose you'll be taking a total of 70,000 IU vitamin D3.

After two weeks on above vitamin D3 dosing schedule, stop taking the once a week loading dose and lower your daily vitamin D3 intake to 15,000 IU/day. Continue at this dose for another two weeks then lower the vitamin D3 intake to a maintenance dose of 10,000 IU/day.  At that point see your PCP for another lab test for 25(OH)D.

If you total the vitamin D3 doses you'll be taking 600,000 IU vitamin D3 over the 4 week period.  This should elevate your 25(OH)D serum concentration by 60 ng/mL, (150 nmol/L) above your starting level.  Assuming that starting level was less than 30 ng/mL, (75 nmol/L), your serum concentration should be around 85 ng/mL, (212 nmol/L).

If you're like most of the other CH'ers who start this regimen, you'll experience a favorable response within the first week to ten days.  Migraineurs sail through their usual cycle times with nary a twinge...

Regarding the safety of this regimen.  Long term dosing with 10,000 IU/day vitamin D3 is very safe.  Your skin can make 15,000 IU of vitamin D3 in as little as 10 minutes if exposed to the UV-B in direct mid-day sunlight clad in a bathing suit without any sun block. 

There haven’t been any posts or reports of vitamin D3 intoxication since I developed this regimen in October of 2010.  Again, over 600 CH’ers have started this regimen since then.  Other than an occasional upset stomach from the magnesium or Omega-3 Fish Oil, there haven’t been any adverse reactions that required medical attention.  You can’t say that about verapamil or any of the other pharmaceuticals prescribed to prevent CH.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 27th, 2015 at 1:24am 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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Re: Who is who here to the newcommers
Reply #820 - May 24th, 2015 at 4:15pm
 
Hello everyone!  Name is Jason, 32 from NC.  I've had clusters going on 6yrs now.  Usually in the fall only but last year in the spring I had two and this spring I'm having a full blown cycle.  I'm extremely happy I've found this site with people that actually understand the pain.  Mine started after a car accident with some head tramua in January of 09'.  Fall of 09' is when I experienced my first cycle.  It's hard for others to understand the pain or realize it's not a normal headache.  So happy I found this site.  I empathize with everyone and feel for each of you after reading some of these post.  Looking forward to getting to know people here.  Really hope at some point there is a type of cure rather than a type of treatment but at least I know now I'm not the only one.   

As for meds I'm on 5mg Zolmitriapan and I use portable o2 from Amazon that hikers and climbers use.  My insurance won't cover O2 tanks so I work with what I've got.  I also started taking 500mg magnesium and as of today started 5000mg of D-3.  Hoping to see some improvements with these suppliments. 

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Reply #821 - Jun 12th, 2015 at 9:32pm
 
Hi, I'm JF, 41 years old from BC Canada. My CH started when I was 16 and had episodes of 3-4 months every 2-5 years since. It was closer to 2 years at first and the time between each has increased to close to 5 years between my last 2 episodes. I usually get 2 CH per day, sometimes 3. I have tried almost everything over the last 20 years but no miracle cures yet! Verapamil seems to help a little bit to reduce the frequency and intensity and I also use Imitrex injection, pills and nasal spray when I a CH. Results varies a lot. Sometimes it helps but sometimes nothing works and I have experienced CH longer than 1 hour a few times. I am currently in the middle of an episode and have tried a Botox treatment following the recommendation of the neurologist. It has been 2 weeks now and the intensity and frequency have slowly come down, so I think this treatment might be working well for me. Smiley
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hell and back
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Reply #822 - Jul 18th, 2015 at 6:24am
 
Hi people, finding it a little hard to navigate the site at the moment but hopefully someone gets this. Here goes, I'm 34 and from Manchester England. I have been suffering for 6 years and I am chronic. I'm completely lost, my doctors have put so many thing into my body with no success. I have had, sumatriptan injections, verapamil, topramte, lithium, morphine, oxygen, prednisalone, dyhydroglotomine, gabbapentin, opcipital blocks (extensive) and some I've probably forgotten. All I have now is, oxygen and sub cut sumatriptan but they arnt working. I'm now at the point of giving up and don't know where to turn. I've lost my life to CH, my house, wife and business. I fight everyday but it's getting to hard. I just can't see the upset in my close families faces anymore. I'm killing them. I am constantly hospitalised and I'm under a specialist called DR silver of livepools Walton centre. I'm treated so badly in my local hospitals due to lack of understanding I now refuse to step foot into a hospital. Please help!
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hell and back
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Re: Who is who here to the newcommers
Reply #823 - Jul 18th, 2015 at 6:27am
 
Hi people, finding it a little hard to navigate the site at the moment but hopefully someone gets this. Here goes, I'm 34 and from Manchester England. I have been suffering for 6 years and I am chronic. I'm completely lost, my doctors have put so many thing into my body with no success. I have had, sumatriptan injections, verapamil, topramte, lithium, morphine, oxygen, prednisalone, dyhydroglotomine, gabbapentin, opcipital blocks (extensive) and some I've probably forgotten. All I have now is, oxygen and sub cut sumatriptan but they arnt working. I'm now at the point of giving up and don't know where to turn. I've lost my life to CH, my house, wife and business. I fight everyday but it's getting to hard. I just can't see the upset in my close families faces anymore. I'm killing them. I am constantly hospitalised and I'm under a specialist called DR silver of livepools Walton centre. I'm treated so badly in my local hospitals due to lack of understanding I now refuse to step foot into a hospital. Please help!
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Re: Who is who here to the newcommers
Reply #824 - Jul 18th, 2015 at 6:42am
 
G'day and welcome. Sorry you're having such a rotten time of it but at least now you're among people who truly understand how horrible this can be.

Many of us have trodden your path and it's bloody awful.

Real importantly, do you have a genuine diagnosis of cluster headache from a headache specialist? Reason I ask is that other conditions can appear very similar but simply don't respond to CH treatments. The good news is that many of your countrymen haunt these hallowed portals and will be able to help out no end.

In the meantime just try to stay strong. Live between the hits.

There is an end to this nightmare.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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