Hi eveyone , I am new to the site , I'm rachel 27 and have had CH since 2009 , currently day 17 of a bout of which I'm having 3 attacks a day  :'(. This question relates to benefits and the bullies at the work program. Now I was originally on jsa untill today I had to stop my claim and claim esa because you can only have a 14 day period of sickness in 12 months while on jsa. I am currently waiting for the forms to fill in and send back. The problem I have is while on jsa I was on a work program and they are saying that I still need to attend ? This to me is ludacrous considering I a not fit for work, I was under the impression that once .my esa claim is set up I would have to go for a medical to determin which group I fall in? I have tried to explain to the work program that I can't attend and that I am in severe pain and its like they think I'm bluffing, its really getting me down on top of what I'm already going through, I can barely look after my son let alone attend a work program , all they say is I will be sanctioned if I don't attend , they really do not understand the severity CH , surely they are wrong as the work program relates to my old jsa claim and not the esa claim? Please help me!  :'(

Thanks rache

Have you been diagnosed?

           Potter

Yes I was eventually diagnosed in 2011 , also doc has refered me to see a specialist

What are your abortives and prevents and where do you live?

                    Potter

Hey Rachel,

Welcome to CH.com.  You've come to the right place...Send your HR people the following link.  It's a youtube video of ClusterChuck going through a cluster headache... 

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Chuck averages six to eight of these attacks every day.  They'll see many other links to videos of people having a cluster headache at the link above.

See your PCP for a lab test of your 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for 25(OH)D is 30 to 100 ng/mL but vitamin D3 experts and most endocrinologist say the real range is 50 to 100.

The odds are you are vitamin D3 deficient and this deficiency is contributing to the frequency, severity and duration of your cluster headaches.

Over the last three years 400 to 500 cluster headache sufferers (CH'ers) have started the anti-inflammatory regimen of vitamins and minerals with 10,000 IU/day vitamin D3.  80% of them have experienced a significant reduction in the frequency, severity and duration of their CH.  75% experienced pain free 24 hour periods and 60% remain essentially pain free.  It's equally effective for episodic and chronic CH'ers.  This regimen is also >90% effective for Migraineurs in preventing their headaches.

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:

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Although this vitamin K 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 1:1 ratio.

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 dosing accelerated vitamin D3 dosing schedule follows:

Take the complete anti-inflammatory regimen with 10,000 IU/day vitamin D3, two of the Omega-3 Fish Oil liquid softgel capsules and one each of the remaining supplements the first day with the largest meal of the day.

If there's no allergic reaction to these supplements (very rare), take 20,000 IU/day vitamin D3 for the next two weeks.  Keep taking two each of the Omega-3 Fish Oil capsules, the calcium citrate tablets and Centrum Silver tablets.

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.

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. 

Take care and please keep us posted.

V/R, Batch

I am currently using sumatripton injection and tablets , to abort , the tablets are not very effective but doc said I can only use injection twice, she also talked about using oxgen but said it is tricky for doctors to prescibe so she would refer me to a specialist as its easier for them to prescibe. In terms of prevention my doctor put me on a course of prednisolone for a week, I had to stop taking them because the side effects were awful, bizzare behaviour, joint pain, anxious , restlessness and they also affected my sleep which she said is not good during a bout. That's all I have tried in terms of medication so far, I have also not been smoking during this bout which makes no difference and I've been staying away from certain foods and strongs smells etc oh I live in manchester england

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        Potter

Have a look at the Gettin' To Know Ya board. At the top is 'Letter to Employers and Friends'.

It may help.

Hey Rachel,

Potter is spot on...  People at OUCH-UK can really help.  They know the ropes and ways through your NHS when it comes to cluster headache.

I didn't see where you're using oxygen as a CH abortive...  It works!  I've attached the Home Oxygen Order Form (HOOF) your NHS requires for home oxygen therapy. It has a provision for the use of oxygen therapy as an abortive for cluster headache.  Download and print this form then have your PCP or Neurologist sign and submit.

Remember to ask for the 25(OH)D lab test when you see your PCP.  There are several CH'ers there in the UK who are using the anti-inflammatory regimen to successfully prevent their CH...  They'll be able to tell you where to purchase the needed supplements over the Internet.

Take care and please keep us posted.

V/R, Batch

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Thanks so much everyone

Hi Rachel,
I'm in the UK too, Portsmouth area. I don't know why your doctor told you she couldn't prescribe oxygen. She probably doesn't want to dent her budget. 
I was unable to get an appointment when my current cycle started and had to settle for a telephone appointment, but the doctor filled in the form there and then while I was on the phone,easy as pie. The suppliers took a week to get the first lot to me, but since then I just have to phone them and it's next day delivery.
The neurologist I saw said prescriptions have to be done by your GP. You will have to wait months for an NHS appointment with a neuro, so see your doctor again. There is a yellow highlighted tab on the left of your screen titled "oxygen info". Perhaps you could print it out to show her. Try, try and try again, to get the oxygen. See a different doc if necessary. I have only had it for the first time for this cycle, but I can promise you it's miracle juice. You can use it as often as you need and it will eliminate the drugs. I only have the injections in my bag in case I get hit when I'm out.
BUT, this is important - You must have a high flow rate of at least 15 ltrs per minute and a non rebreather mask. Get it wrong and it won't work as so many others have found out. Luckily I had found all the info here on this site and knew exactly what to ask for.
As for the benefits/work program, have you given them a sick note from your doctor, like you would if you were working. I've never been in that situation, but surely that would cover it.
I agree the sumatriptan tablets don't help much because they take too long to get into your system, but if you take one at night before you go to bed they will often delay the night time attacks long enough for you to get a few hours sleep.
Hope this has helped. MOVE HEAVEN AND EARTH TO GET THAT OXYGEN.
Maz.

Do work with your local OUCH support group. Theycan advise on how your health law allows you to by-pass local health care and move directly to specialty clinics for headache.

Ask OUCH if how you can get accepted by:

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It's a major research/treatment organization.

Our experience with UK folks is fairly consistent: local providers are seriously lacking in skill/training with complex headache disorders, hence, moving to a specialty treatment group is essential.

Go back to your Dr. post haste and ask again for O2.  Take along a portion of this:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; in particular section 1.3.26 through 1.3.33.  Show her O2 is the preferred abortive of choice. 

When she put you on Prednisolone she should also have started you on a regimen of Verapamil (not sure what you call it in the UK)  The Pred is only a stopgap to give you a break to allow a long term preventative to get in your bloodstream and become effective.  HOWEVER, if you will follow the D3 regimen Batch gave you I don't think you will need a preventative, just a little O2 to handle any breakthroughs you get.  I would also suggest you stockpile the sumatriptan injections, even when you don't need them in case you have an outbreak later.  When you have a comfortable stockpile available you can quit.  If you keep it in a dark cool place it seems to work well beyond the expiration date with no problems. 

Also, look on the left side of this screen and click on the imitrex tip.  It will help you get 2 to 3 doses from a single shot.

All the best,
Jerry