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Kasmorris

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Hello
Aug 1^st, 2012 at 8:12am

Hi,

My name is Kevin and I am a 56-year-old male living in the South of England who has been suffering from CHs for 14 years. It took five years of bouts and visiting several general practitioners, two neurologists and enduring several CAT scans before I was told mine was a ‘classic case of CH’. (How long it would have taken if I had not had the classic unilateral pains through my right eye, lacrimation, redness of that eye, rhinorrhea from the right nostril, etc I dread to think!)

In general, all of my bouts last between 11 and 12 weeks with up to 6 headaches each day which, when untreated, have lasted for up to three hours at a time but never less than one hour. (Worst day was six attacks and around three hours for each.)

If I’m lucky then I have one bout a year, leaving me nine months pain free. If I’m unlucky then I get two bouts with just six months of normal life.

As with the findings of the US CH survey, posted here, my bouts tend to occur around the months when the clocks change. And the most intense attacks come at around one-thirty in the morning. (Of course, this could be because I’m not awake to feel the aura and my body doesn’t hear the monster coming to shove a sharp object through my eye.)

My older brother has suffered from migraine ever since he was a child and found that caffeine, stress and tiredness have been triggers for his headaches.

My triggers seem to be the usual for CHs: air flights, alcohol, pungent perfumes, etc.

As for treatments that I have tried, you name it I’ve been there from chiropractors to acupuncturists, to hydrotherapy, faith-healing and all that modern medicine has to offer.

I find that about a week before a bout begins I start to get agitated (or rather, my wife noticed this). It’s a chicken and egg situation, does my body recognise that the beast is on its way or does the fact that I get grumpy and short-tempered bring on a bout? I have tried yoga and used relaxation techniques when my wife points out one of my agitated states, but I’ve found that the bouts still arrive. (Maybe I’m just not using yoga properly? Don’t know.)

As far as coping with CHs: my method is to use nortriptyline and pizotifen each evening and then take two Co-codamol/Zapain every four hours during the day (8AM, Noon, etc) and alternate them with two aspirin (10AM, 2PM etc). I also have oxygen at home that I use for night attacks and Imigran, which I try use as rarely as possible. (That’s because I noticed it stopped the current attack within a few minutes, but the next attack was more severe and even more persistent.)

The other method I use is the water treatment – thank you Margi and Mike!!! That certainly helps when I am at my drugs limit, as does vigorous exercise. (Working in a tall building means that I can trot down eight flights of stairs and then power-walk up them again two at a time, which means very deep breathing and a high heart rate as that can often bring an attack to a premature end.)

The only other useful thing I can add is that I have found the Hay Diet to be beneficial, reducing both the frequency and the severity of attacks in a bout. A very quick summary of the Hay Diet is to avoid refined sugar and processed food and NEVER mix protein and carbohydrates in the same meal.

A book of the diet was lent to me by my brother who found that sticking to the diet meant his migraines disappeared completely and it has certainly helped me, too. (Amazon sell the book for £4.99)

Sorry this is so long, but once I started it all kind of came spilling out.

Thanks for reading.

PS. I don’t know if anyone’s pointed it out, but when the US research mentions that 55% of respondents had considered suicide and 2% had attempted it… one wonders how many people with CHs have succeeded and are therefore unavailable to respond to surveys?

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Bob Johnson

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Re: Hello
Reply #1 - Aug 1^st, 2012 at 8:40am

A global, first reaction: many of the folks find your medical system notably weak in finding skilled doc to treat complex headache disorders. Suggest you contact your most excellent support group and explore how to get to a headache specialist.

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We have been told that you have a right to get a direct referral to a headache clinic.

Your family history may lead to some greater complexity of finding an effective treatment plan, making a speciality clinic the more important.

The PDF file, below, give you an over view of what is commonly used and measures of effectiveness. It's a useful tool to guide discussions with any doc.

The triptans are, as a group, the best abortives but finding one which is most effective you need needs, again, some experience/skill. Sumatriptan may not be causing more/more intense attacks as much ass running out of steam before the attack has run it's natural histsory. (previously posted message follows.)

Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)
=========
Sumatriptan has a hard initial punch and relatively short effective life--a combination which works well for most Cluster attacks. However, some people, whose Clusters have a longer life, find that the med is wearing down even as the pain continues. One can understand how this sequence comes into one's thinking: Attack, Imitrex injection, pain continues, it's a rebound cluster which has developed from the Imitrex. In fact, this is a recurrence of the attack, not a rebound.

This is one of the reasons that several other triptans were developed having less initial punch but longer effective life. While aimed at the migraine crowd, at first, a number of cluster users have found this characteristic of value to them.
=======

Bottom line: getting to a skilled doc is the essentiald first step.

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Bob Johnson

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wimsey1

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Re: Hello
Reply #2 - Aug 1^st, 2012 at 9:16am

Dittos what Bob said. Here's a summary of our collected wisdom, realizing that all of us have tried all of the non-usual means you describe to no effect:

1. Find a good headache specialist-this is imperative, and not clear to me from your post.
2. Start a prednisone taper (starting around 80mg/day)
3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.
4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.
5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray
6. Keep a log or journal of your attacks, and learn to use the KIP scale at left

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance

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Potter

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Re: Hello
Reply #3 - Aug 1^st, 2012 at 9:33am

wimsey1 wrote on Aug 1^st, 2012 at 9:16am:

Dittos what Bob said. Here's a summary of our collected wisdom, realizing that all of us have tried all of the non-usual means you describe to no effect:

1. Find a good headache specialist-this is imperative, and not clear to me from your post.
2. Start a prednisone taper (starting around 80mg/day)
3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.
4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.
5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray
6. Keep a log or journal of your attacks, and learn to use the KIP scale at left

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance

That one is important.

Potter

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Kasmorris CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Hello Reply #4 - Aug 1^st, 2012 at 9:45am Thanks for the replies and the info guys. My current oxygen supplier issues tanks with a regulator built in - which only goes up to 15lpm. Also, do you know anyone who rents out portable oxygen (if there is such a thing)?
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Hello Reply #5 - Aug 1^st, 2012 at 12:45pm We live in different worlds; we still struggle to speak the same language! Best if you direct questions about sources of equipment, etc. to your support group.
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wimsey1

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Re: Hello
Reply #6 - Aug 2^nd, 2012 at 7:46am

You know, I just read your post again, and I have to say, my goodness you're all over the place. From yoga to diets. We understand the desperation to find something, anything that will work, but...you need a better plan along the lines of what I posted above. You do know the current wisdom on CHs is that it is a primary headache (not caused by secondary issues) and probably the result of a deformed hypothalmus? Triggers are not causes, and most of what you list won't help in the least. Or rather it hasn't helpd the majority of us who are here. As for "portable" tanks, Bob is right. Start with whomever gives you O2 now and go from there. God bless. lance

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Kasmorris

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Re: Hello
Reply #7 - Aug 3^rd, 2012 at 9:28am

Hi Lance,
Yup I guess I am all over the place, but as yet there is no 100% guarantee that all CHs are caused by a deformed hypothalamus. (Why would they suddenly kick in at random periods of different people's lives and not happen from birth?)
Of course most of the evidence points at the hypothalamus what with the clockwork timings of the attacks that incriminate it, but I have a lot of problems with my right shoulder and, what a specialist called, a 'snapping scapula' that started on the very same day that I experienced my first CH.
Yes that could be completely coincidental but if I overuse my right arm or tighten/un-tighten a screw too forcefully then I bring on a bout of clusters. That is the main reason why I have concentrated a lot of time and effort in exploring other areas of medicine which concentrate on my shoulder - especially the rotator cuff.
But thanks Lance I'll contact my 02 supplier.
Stay well, Kevin

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Batch

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Re: Hello
Reply #8 - Aug 3^rd, 2012 at 3:15pm

Hey Kevin,

Welcome to CH.com. I've traveled to the UK for business on many occasions and I'm partial to the South of England from Blandford Forum down to Poole and Bournmouth. I loved the area.

I'm also familiar with the integrated oxygen systems in use there in the UK and across most of Europe. You've a couple options to improve the effectiveness of oxygen therapy when limited to a flow rate of 15 liters/minute. Both options use the same breathing technique so lets start there.

This breathing technique is essentially hyperventilating at forced tidal volumes. You can practice this with room air. Start by standing to give your diaphragm full range of motion then exhale forcibly. When it feels like your lungs are empty... they're not.

Do an abdominal crunch like doing situps. Hold the crunch and chest squeeze until your exhaled breath makes a wheezing sound for a couple seconds. This will squeeze out an additional half to full liter of exhaled breath that has the highest concentration of CO2. Then without delay, inhale as rapidly and fully as possible. Keep repeating this sequence.

This breathing technique accomplishes two important things. It elevates arterial partial pressure of oxygen above normal, and it lowers the arterial partial pressure of CO2 below normal. Both conditions stimulate vasoconstriction.

You also need a non-rebreathing oxygen mask with a 3-liter reservoir bag in order to be able to inhale a lung full of oxygen without waiting for the regulator to fill the reservoir bag further. The $27.50 O2PTIMASK™ kit here at CH.com is ideal. I think BOC may carry them as well.

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You'll notice three things happening when using this breathing technique... even with room air.

The first is an uncontrollable urge to cough. It will start with the second or third full breath using this breathing technique and it will clear in 10 to 15 seconds.

The coughing is due to a condition called atelectasis where areas of the lung's alveoli collapse like a compressed sponge during the abdominal crunch and chest squeeze where you force out as much exhaled breath as possible.

The body's response to this condition is coughing... That re-inflates the affected alveoli and also stimulates the secretion of additional surfactants that make the lining of the alveoli less sticky.

The second thing you'll experience are the symptoms of paresthesia... a very slight tingling or prickling of the fingertips, lips and back of the neck. It's also frequently associated with a slight dizziness.

Lean against a wall when using this breathing technique and if you feel too dizzy, sit erect in a chair. The important thing if you sit is not to hunch over your knees in a fetal position. This compresses the diaphragm and prevents complete lung ventilation.

The third thing is you will get tired... This is hard work, but the payoff is well worth the effort.

Now for the first option using the integrated regulator and oxygen cylinder at 15 liters/minute. This procedure is simple. Take two breaths of room air using the above breathing technique hyperventilating at forced vital capacity and one from the oxygen mask with the same technique.

I inhale directly from the O2PTIMASK's green "T" manifold with the palm of my hand cupped over the exhaust port and exhale away from the "T" manifold into the room. I then place the inhalation port on the "T" manifold against my cheek to prevent oxygen from leaking out while the reservoir bag is filling. By the time I've done two breaths of room air, the reservoir bag will have filled with oxygen and is ready for the next breath.

Although you're only breathing a third the oxygen you would get using the same mask, a regulator delivering 45 liters/minute, and the same breathing technique, you're casting off at least two to three times the volume of CO2 than you would breathing oxygen continuously at a flow rate of 15 liters/minute with a properly functioning non-rebreathing oxygen mask.

This accomplishes three things that stimulate vasoconstriction and aids in aborting a CH much faster than the alternative of breathing oxygen continuously at a flow rate of 15 liters/minute.

These include lowering the arterial partial pressure of CO2 and elevating arterial pH (respiratory alkalosis). The third thing comes as a result of the first two... By elevating the arterial pH, you increase blood hemoglobin's affinity for oxygen thereby enabling each hemoglobin molecule to carry up to 10% more oxygen. This results in a superoxygenated flow of blood to the brain further stimulating vasoconstriction.

The second option is to build your own "redneck reservoir bag" out of a clean 40 gal contractor trash bag.

The complete MacGyver instructions to build and use this contraption are listed in post #4 of the following link:

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You'll need to pre-fill the Redneck Reservoir Bag system and seal it with a rubber band for a gas tight seal ahead of time. If you do the math, the volume of the redneck reservoir bag is 150 liters so filling it will take 10 minutes at a flow rate of 15 liters/minute.

The procedure for the "redneck reservoir bag" breathing contraption is also simple. Use the same breathing technique from above, inhale from the bag and exhale into the room. If you're using this breathing technique correctly... most of your aborts will be one baggers...

The other thing to do is see your PCP and ask for a lab test for 25(OH)D. This is a metabolite of vitamin D3 that's used to measure your status of this vitamin... The normal reference range for this lab test is 30 to 100 ng/mL. (75 to 200 nmol/L as measured by most of the medical diagnostic labs in the UK).

Nearly all CH'ers with active CH are vitamin D3 deficient. Moreover, 76% of the CH'ers who have gone on the anti-inflammatory regimen have experienced a significant reduction in the frequency and severity of their CH. Most of them go completely pain free.

You can find a complete list of the supplements used in this regimen along with doses and dosing strategy at the following link:

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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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Kasmorris

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Re: Hello
Reply #9 - Aug 5^th, 2012 at 5:31am

Hi Batch,

Thank you - some really interesting stuff there. I've tried the breathing technique and it helped a lot. Luckily I know a nurse who, when I got the oxygen, gave me a non-rebreathing mask so that helped.

I shall be starting the anti-inflammatory regimen tomorrow, although with my own research I have already been taking the required Omega -3 fish oil for some time and have been using magnesium oil on my skin (which apparently absorbs more magnesium than taking tablets). However, I will switch it all over to the recommended doses on the regimen to give it the best chance.

Thanks again, Stay well.

Kevin

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« Last Edit: Aug 5^th, 2012 at 5:40am by Kasmorris »

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