Hi all,
My neurologist recommended this board as a support resource so here I am. I'm a 35 y/o female and have been a CH sufferer for over 12 years now. It took me 9 of those 12 years to get a proper diagnoses (likely because of my age and gender) and to this day, I feel that the illness isn't widely recognized or taken as seriously as it should be by medical professionals. My current neurology team is great, but prior to them, I'd been diagnosed with altitude sickness, chronic sinus infections, migraine, trigeminal neuralgia and I even had one (male) dr. tell me to stop wearing makeup because it was the cause of my headaches.

My cycles are currently 1.5-2 months on and then I usually get 2-3 weeks of remission before the headaches return. My attacks are severe and usually last anywhere from an hour to 5 hours, and sometimes they happen in such a quick succession that it's difficult to tell when one ends and another begins. The frequency varies between cycles. The one I am currently in is pretty brutal with 5-7 attacks per day, but my last cycle was only 1-2 per day.

My symptoms are fairly standard, except that I always have them on the left side, behind my left eye and I do lose partial vision during the more severe attacks. So far, most medications have been unsuccessful. Triptans do not work for me at all. Blood pressure meds (verapamil) actually made the attacks worse, and the side effects with the anticonvulsants (topamax and one other that starts with a c, can't remember) are far too intense for me to handle. Topamax actually does help to shorten the cycles, but it caused me to have terrifying hallucinations at 100mg dosage, as well as some pretty heavy auditory and visual impairments. I'm currently on Migranal, which actually does work, but because it's an ergot, I can only take 8-10 doses per week, plus the cost is outrageous. $5,000 for just 8 doses is something that my insurance company will only pay for once a month so I reserve it for emergency situations only. I do have a 10 liter oxygen machine and so far it's been the best treatment option. The downside is that it doesn't always work and it can take up to an hour for relief when it does. It's not portable either so I'm not able to drive or leave my house much at all during a cycle.

The fear of the pain is the most difficult part for me. There are nights where I force myself to stay awake for as long as possible because I'm afraid of going to sleep. Sleeping seems to start the daily nightmare for me. These headaches leave me feeling helpless and exhausted and I'm at a point where I have begun to research and ask my neurologist about dr. assisted euthanasia. Most people don't understand that while CH isn't life threatening in a medical sense, it is very detrimental to one's quality of life. I just can't imagine another 40 years of this. It is absolutely debilitating in every way. I am an educated woman with an advanced degree in Biology. I am unable to work or function like a normal human being. I avoid making social plans, and my entire life revolves around this horrible illness and the pain that it causes.

I am very fortunate to have a loving and compassionate significant other, as well as a supportive family. That and the hope for some sort of resolution are the only things that keep me from coming completely unglued.

Any advice is welcome and greatly appreciated. Thank you for taking the time to read my story.

G'day Mish, sorry you had to come looking for us but here we are, large as life and just as smelly. Every one of here is either a ClusterHead, or supports someone who is, so we really do know what you're going through.

Many of us have also been where you are now and it's a dark and horrible place.

Happily there's a few things happening which may help you get your life back and the first is just good old-fashioned oxygen. As you've got some relief from your 10litre machine it's worth looking at the Oxygen Info button top left of your screen. People are having raging success using it pure at 15-25 litres a minute through a special mask and it's not that difficult to set up.

As to preventive medications we can suggest different types and dosages you might like to discuss with your doctor and we've come a long way with a Batch of vitamins (of all things) that are giving huge relief to some 80% of sufferers.

Stay with us, talk to us, because there can be a future and we really do care.

Hi Mish and welcome to the place where people really do understand CH as we all either have it or support someone with it.

It is great to see that your neuro recommended you come here. So many medical people seem to think that all a patient needs is some pills and nothing else. Yours at least understands that support and advice from others with CH is very helpful.

You seem to have had a good working through of different preventives, although I notice you've not mentioned trying lithium as a preventive. I've sent you some info on CH which includes details about lithium as a preventive.

Another preventive that has proved popular here is using vitamin D3 with currently about 85% of people benefiting from it. I've gone over 4 years CH pain free with it, so when Batch sends you info about it I'd consider trying it.

With oxygen concentrators a lot of people do not find them too effective for aborting CHs, partly as they do not deliver 100% pure oxygen plus the flow rate isn't too high, instead what we have found to work a lot better is using pure oxygen from a cylinder at a high flow rate, with 15 lpm working well and high flow rates better, using a non-rebreather mask.

We've an oxygen page (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) that has everything you need to know about oxygen equipment and how to use it well.

Oxygen cylinders are a lot more portable than an oxygen machine too as you'll be able to put some in your car or with a smaller one put it in a back pack (I've done this).

We really understand the fear of the pain as being an issue, not just the pain itself, however what makes a real difference is when you find a preventive that works for you, cutting down how many CHs you get and an effective abortive to cut down how long the pain lasts. There is a massive difference between when CH is in control of your life and when you start to get control back.

One other thing that people will suggest is that you get a confirmation of your diagnosis and treatment plans from another headache specialist, especially with the potential option you're considering. Whilst you've found that getting the CH diagnosis has not been easy I hope you understand why I and others will suggest this step. We aren't doubting you, we just want to ensure that your diagnosis is correct as that is the key to getting the right treatment.

Keep reading and ask all the questions you can think of. We've all been in that dark place where we see no way out.

Mish,

There's not much else I can add to what Brian and Mike have said, other than to reiterate that the Vitamin D3 Regimen has been a life changer for many of us.

Before I started on  it I was being hit hard every single day for 3 years and in a very bad place in my head. I now have my life back.

There are lots of experienced, caring people here from all over the globe ( as you're beginning to realise), so there is always someone here to help.

So use this place well, for advice, support and understanding. I couldn't do without it.

Keep well,

Peter.

While you are pleased with your doc, the fact that several of the better meds for Cluster have not worked for you, raises another issue to bring to his attention.

There are a multitude of disorders which appear to be Cluster but which are nost headache disorders. Suggest you print the following and give to him.
=====
Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed
==================================
Also, see:
Look under: Medications,  Treatments,  Therapies -› Important Topics ->Cluster-LIKE headache

Print the article below and share with him.

---

I have had 3 separate specialists confirm my diagnoses. I have had both MRI and CT scans done during an attack as part of a study group, which confirmed that my hypothalamus is abnormal and that the cause of the pain is that the blood vessels are "seizing".

I was in a very bad auto accident at the age of 20 and did suffer a concussion with loss of consciousness for over 4 minutes, broken bones including pelvis, face lacerations and nerve damage. My headaches began about 2 years later. My dr. has told me that this could have played a role. My mother also had a history of severe headache, but what kind remains a mystery because unfortunately she is no longer available to ask.

My symptoms are not "cluster like", they are that of CH specifically, combined with my study group results. My left eye stays red and swollen and watery during an attack. Sometimes during more severe attacks I get tunnel vision in the left eye as well. The pain is primarily concentrated behind my left eyeball, but I can sometimes feel it down to my upper jaw. I do not have any dental issues either, as I've had that checked as well. It doesn't throb and I'm not usually sensitive to sound, it's more of an intense burning sensation and my face sweats and feels hot, as it if it were actually on fire. I have episodic cycles, with recurring headaches at set times throughout each day. Currently I'm at 3:30am, 6am, 11am, 5:30pm, 8:30pm, 11:00pm and sometimes I get one between 11am and 5:30pm, but usually only if I take a nap. When my cycles aren't as severe and I'm only getting 1-3 per day, they always occur around one of the above times listed, and it's usually 3:30am and 11am. These 2 specific times seem to be the ones that stick out the most as they occur on EVERY cycle, regardless of severity.

As far as medications are concerned, I have actually found a few that help, but due to the side effects and the way they affect the rest of my body, I am unable to take them. Both Topamax and Verapamil are among these. Topamax worked wonders to shorten the cycle duration, and it took the intensity of attacks way down. The issue with this drug was that it was incredibly dangerous for me at the high dosage I needed for it to work. I am not a recreational drug user & hallucinations are not a fun, hippie past time of mine. It was horrifying. I was paranoid and convinced that I was a terrible person while on this medication. It made me behave like a crazy person, and I was so doped out of my mind that I couldn't finish sentences.

I seem to be very sensitive to certain medications and for this reason, I don't even take aspirin unless absolutely necessary. I pay attention to, and worry about side effects and long term toxic effects. Verapamil actually lowered my blood pressure a little too much and caused fainting spells, tingling in both hands and feet, and although it did shorten the length of cycles somewhat, I was never able to get up to max dosage with it because my dr. yanked me off of it due to the side effects. The triptans that I have been prescribed have not been successful. I have been on both the oral and the nasal spray of sumatriptan (imitrex) and neither had a high rate of success. The nasal spray maybe worked about 25% of the time and the pill took so long that it really didn't do much of anything. I am currently on dihydroergotamine mesylate (migranal nasal spray) and it is amazing for aborting attacks within 10 minutes usually. The problem is that the effects only keep the headaches away for a few hours and because of the long term toxic effects of ergotamines, my dr. does not want me to use more than 10 sprays per week. Because of the success of this treatment, I am going to discuss the possibility of an ergot in pill form for prevention instead.

The drs. I have now are fairly new. My previous neurologist moved out of state and was not a big fan of medication management so I've only started to experiment with different treatment methods recently. My dr. and I are playing medication roulette in an attempt to try to find something that not only helps, but that is safe for me to take. What works for one person may not and does not always work for another. Lithium and certain anesthesias are not an option at all for me due to the way they make the body overproduce choline. I am highly allergic to these drugs and they can be fatal. The required minimum dosage of this drug would be too high for me and would likely cause toxicity.

My vitamin D levels were checked 8 months ago and I was dangerously low. I have been taking 2000iu of D3 every day since then, but I plan on revising my regimen to match the one that I was directed to on this site. I definitely feel like I'm slowly making progress, but some days are harder than others. It's also very difficult having to wait 2 months in between neurology appointments while in active cycles and trying different medications. Obamacare pretty much killed my quality of healthcare.

I am going to talk to my dr. about changing my oxygen machine too. The concentrator that I have does help, but it's not nearly as effective as the 15 liters that I get when I'm desperate enough to go to the ER. BTW, it also took me 2 years after diagnoses to get an oxygen machine for home use. I dunno why, but they seem to be really stingy about that. My new dr. says that it was likely due to my age, and the fact that the insurance companies don't like to approve oxygen therapy for neurology patients. In order to get me oxygen, he actually fudged the report to the insurance company and told them that my lungs were congested.

Mish C. wrote on May 19^th, 2016 at 7:27pm:

I have had 3 separate specialists confirm my diagnoses. I have had both MRI and CT scans done during an attack as part of a study group, which confirmed that my hypothalamus is abnormal and that the cause of the pain is that the blood vessels are "seizing". I was in a very bad auto accident at the age of 20 and did suffer a concussion with loss of consciousness for over 4 minutes, broken bones including pelvis, face lacerations and nerve damage. My headaches began about 2 years later. My dr. has told me that this could have played a role. My mother also had a history of severe headache, but what kind remains a mystery because unfortunately she is no longer available to ask. My symptoms are not "cluster like", they are that of CH specifically, combined with my study group results. My left eye stays red and swollen and watery during an attack. Sometimes during more severe attacks I get tunnel vision in the left eye as well. The pain is primarily concentrated behind my left eyeball, but I can sometimes feel it down to my upper jaw. I do not have any dental issues either, as I've had that checked as well. It doesn't throb and I'm not usually sensitive to sound, it's more of an intense burning sensation and my face sweats and feels hot, as it if it were actually on fire. I have episodic cycles, with recurring headaches at set times throughout each day. Currently I'm at 3:30am, 6am, 11am, 5:30pm, 8:30pm, 11:00pm and sometimes I get one between 11am and 5:30pm, but usually only if I take a nap. When my cycles aren't as severe and I'm only getting 1-3 per day, they always occur around one of the above times listed, and it's usually 3:30am and 11am. These 2 specific times seem to be the ones that stick out the most as they occur on EVERY cycle, regardless of severity. As far as medications are concerned, I have actually found a few that help, but due to the side effects and the way they affect the rest of my body, I am unable to take them. Both Topamax and Verapamil are among these. Topamax worked wonders to shorten the cycle duration, and it took the intensity of attacks way down. The issue with this drug was that it was incredibly dangerous for me at the high dosage I needed for it to work. I am not a recreational drug user & hallucinations are not a fun, hippie past time of mine. It was horrifying. I was paranoid and convinced that I was a terrible person while on this medication. It made me behave like a crazy person, and I was so doped out of my mind that I couldn't finish sentences. I seem to be very sensitive to certain medications and for this reason, I don't even take aspirin unless absolutely necessary. I pay attention to, and worry about side effects and long term toxic effects. Verapamil actually lowered my blood pressure a little too much and caused fainting spells, tingling in both hands and feet, and although it did shorten the length of cycles somewhat, I was never able to get up to max dosage with it because my dr. yanked me off of it due to the side effects. The triptans that I have been prescribed have not been successful. I have been on both the oral and the nasal spray of sumatriptan (imitrex) and neither had a high rate of success. The nasal spray maybe worked about 25% of the time and the pill took so long that it really didn't do much of anything. I am currently on dihydroergotamine mesylate (migranal nasal spray) and it is amazing for aborting attacks within 10 minutes usually. The problem is that the effects only keep the headaches away for a few hours and because of the long term toxic effects of ergotamines, my dr. does not want me to use more than 10 sprays per week, or 5 sprays per nostril. Because of the success of this treatment, I am going to discuss the possibility of an ergot in pill form for prevention instead. The drs. I have now are fairly new. My previous neurologist moved out of state and was not a big fan of medication management so I've only started to experiment with different treatment methods recently. My dr. and I are playing medication roulette in an attempt to try to find something that not only helps, but that is safe for me to take. What works for one person may not and does not always work for another. Lithium and certain anesthesias are not an option at all for me due to the way they make the body overproduce choline. I am highly allergic to these drugs and they can be fatal. The required minimum dosage of this drug would be too high for me and would likely cause toxicity. My vitamin D levels were checked 8 months ago and I was dangerously low. I have been taking 2000iu of D3 every day since then, but I plan on revising my regimen to match the one that I was directed to on this site. I definitely feel like I'm slowly making progress, but some days are harder than others. It's also very difficult having to wait 2 months in between neurology appointments while in active cycles and trying different medications. Obamacare pretty much killed my quality of healthcare. I am going to talk to my dr. about changing my oxygen machine too. The concentrator that I have does help, but it's not nearly as effective as the 15 liters that I get when I'm desperate enough to go to the ER. BTW, it also took me 2 years after diagnoses to get an oxygen machine for home use. I dunno why, but they seem to be really stingy about that. My new dr. says that it was likely due to my age, and the fact that the insurance companies don't like to approve oxygen therapy for neurology patients. In order to get me oxygen, he actually fudged the report to the insurance company and told them that my lungs were congested.

       O2 at 25lpm  with a non-rebreather mask is the standard.  The concentrators are worthless.

               Potter

@Potter That seems to be a big part of my issue. I currently have this crappy 10lpm machine with a high flow cannula that dries out and burns my nose because it takes up to an hour to show results. I just checked out the page here on O2 and it was extremely helpful. Now I know what to ask for at my next appointment.

When my headaches first began, they were manageable. I was only getting them for about 3 months out of the year and they were not as frequent or intense. Fast forward to now and they have gotten substantially worse. I suspect that altitude actually does play a role to some degree, but I could be wrong. At onset, I was living on the east coast at a much lower elevation. It seems that the severity increased rapidly and dramatically upon relocating to Colorado 5 years ago and it has been getting progressively worse since. Any thoughts on this?

Mish C. wrote on May 19^th, 2016 at 8:04pm:

@Potter That seems to be a big part of my issue. I currently have this crappy 10lpm machine with a high flow cannula that dries out and burns my nose because it takes up to an hour to show results. I just checked out the page here on O2 and it was extremely helpful. Now I know what to ask for at my next appointment. When my headaches first began, they were manageable. I was only getting them for about 3 months out of the year and they were not as frequent or intense. Fast forward to now and they have gotten substantially worse. I suspect that altitude actually does play a role to some degree, but I could be wrong. At onset, I was living on the east coast at a much lower elevation. It seems that the severity increased rapidly and dramatically upon relocating to Colorado 5 years ago and it has been getting progressively worse since. Any thoughts on this?

  Coincidence.

          Potter

I'm wondering what factors could be playing a role in the progression of this illness for me. Tumors etc. have all been ruled out by testing. I do not smoke cigarettes or MJ. I gave up the occasional wine drinking entirely because I figured out early on that it was an immediate trigger. No drug use at all, other than the meds I take for CH. I drink mostly water, and the occasional sweet tea or regular soda. I'm not overweight and I do not have any other health issues, aside from painful menstrual cramps once in awhile.

It just seems like this progressed so rapidly once I moved to Colorado. Other than altitude, I can't imagine what could have caused that. I will be going to Natural Grocers tomorrow morning to purchase all of the necessary supplements that are outlined in Batch's post. I plan to start that regimen immediately and I'm crossing my fingers that it's really as simple as taking a few vitamins. That would be so amazing! You know the headaches are bad when, as an atheist, you find yourself praying to a God that you don't even believe in to "please make it stop."

Mish C. wrote on May 19^th, 2016 at 8:04pm:

I suspect that altitude actually does play a role to some degree...

I've come across that quote so often here, Mish. For some it's moving to the mountains, for others it's the other way round.

Others talk of impending storms so perhaps air pressure plays a large part for some people.

Anyway, you're far from alone in wondering about that aspect.

I live in the Denver metro area and a change in altitude usually causes things to be much worse. I have also had issues the last several times I have flown.

Several of our snow storms this winter brought on HA's, which hasn't happened to me before.

Hey Mish C,

Here's my latest oxygen therapy procedure and breathing technique you should try to abort your CH.  You'll need one of DJ's ClusterO2 kits from the CH.com store yellow tab at the left of this screen.

I call this method Oxygen Therapy with Hyperventilation.   It essentially involves hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds followed by inhaling a lung full of 100% oxygen and holding it for another 30 seconds.  You keep repeating this sequence until you're pain free.

Remove the face mask from the ClusterO2 kit when you receive it as you'll be breathing directly from the 22 mm nipple on the green "T" manifold or mouthpiece as shown below.  You'll also need to adjust the oxygen regulator so it fills the 3 liter reservoir bag completely in one minute...

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You'll also need to cup the T-manifold exhaust port in the palm of your hand and press the open breathing port to your cheek or chin when not inhaling from it to keep oxygen from escaping and let the reservoir bag fill while you're hyperventilating with room air.

Start by standing to give your diaphragm full range of movement... This is important as standing during this procedure helps ventilate the lungs more completely.  Lean against a wall if you get dizzy while using this method of oxygen therapy.  If you get too dizzy, sit erect in a chair and don't hunch over.

The next step is exhale forcibly through your mouth until if feels like your lungs are empty...  they're not!  Do an abdominal crunch like doing sit-ups and hold the squeeze until your exhaled breath makes a wheezing sound for a couple seconds.

It sounds terrible but it's a very important part of this method of aborting a CH with oxygen...  This forced exhalation breathing technique will squeeze out another half to a full liter of exhaled breath.  This last volume or end tidal flow of exhaled breath has the highest CO2 concentration and blowing off CO2 is the key to the effectiveness of this procedure.

Then without delay, throw your head and shoulders back and inhale room air as rapidly and deeply as possible until you can't inhale any more.

Again without any delay, use the forced exhalation technique.  Keep repeating this sequence as fast as possible with room air for 30 seconds.  You should be able to complete 10 of these complete cycles in 30 seconds.

At the end of the 30 seconds breathing with this technique, exhale forcibly one more time and hold the squeeze for a good 5 seconds...  Then place the ClusterO2 kit "T" manifold breathing port to your lips and inhale a lung full of 100% oxygen as rapidly as possible and hold it for 30 seconds. 

I know it's difficult, but try to relax at this point.  While you're waiting, place the breathing port on the ClusterO2 kit to your cheek or chin with the palm of your hand over the exhalation port to form a gas tight seal in order to inflate the reservoir bag for the next breath of oxygen.

If you're doing this breathing technique properly, you'll start feeling the symptoms of transient paresthesia and a slight dizziness...  These temporary symptoms of paresthesia include a very slight tingling/prickling of the face, lips, and fingertips.  You'll also experience a slight rush when you start holding the lungful of oxygen...  Paresthesia is the best indication you've pushed your body into respiratory alkalosis.

At the end of the 30 seconds holding the lungful of oxygen, exhale into the room with a good chest squeeze... then repeat the above sequence until the pain is completely gone... 

Be sure to practice this procedure for a few cycles before the cluster beast attacks...

If you start this procedure at the first sign of an approaching CH attack, you should be able to abort the attack in four minutes or less...  and with as little as 16 to 20 liters of oxygen...

If the CH hits while sleeping and is well established or rising, start this procedure as fast as possible.  It will work effectively through pain level 9, (Kip 9), it will just take longer.

The following chart from the pilot study of the demand valve method of oxygen therapy for rapid CH aborts illustrates the increase in abort times as the pain level increases.

Oxygen therapy combined with hyperventilating on room air is just as fast at aborting a CH and as effective as the demand valve method.  I'm a patent holder of the demand valve method of oxygen therapy so I've studied and used it extensively since 2007.  The new procedure also uses a lot less oxygen than the demand valve so it works very well with low flow rate oxygen regulators.

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While you're waiting for the ClusterO2 kit to arrive and if you're handy with DIY projects, you can build a Redneck Oxygen Reservoir Bag Breathing System.  They work great...

All you need is a clean 20 gal (or white kitchen) trash bag, the oxygen tubing from your old disposable nose cannula, (cut off the cannula portion prior to the split in the tubing) an empty 16 oz plastic Coke or Juice bottle (with cap... You'll need to cut the bottom off the plastic Coke bottle as it will become your mouthpiece), some Duck Tape and some black electricians tape.  The following graphics should help in this DIY effort.

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Fill the Redneck Reservoir Bag ahead of time with the cap in place.  If you've constructed it properly, it should hold oxygen for a few days. Your 10 liter/minute regulator will work just fine with the above procedure and the Redneck system.

When the next CH hits, turn on the oxygen supply and remove the bottle cap as you complete the first 30 seconds of hyperventilating with room air.  Inhale the lung full of 100% oxygen then replace the cap to allow the redneck reservoir bag to fill.  If it fills too rapidly lower the flow rate to 4 liters/minute.

Use the same breathing technique and procedures discussed above.  You'll be surprised at the lack of inhalation resistance sucking oxygen from the Redneck reservoir bag.

Check your PM InBox, I've sent you some additional information that should help.  To access your PM InBox, click on the bold font saying you have 1 new message.

Take care and please keep us posted...

V/R, Batch

Thank you all so much & especially Batch for all of the useful technical info. I will be getting everything setup asap. I have learned more here so far than I have over the entire 12 years that I've spent suffering. You guys are amazing and thank you for doing what you do. I'll be sure to post updates over the coming weeks.

Like you I suspect my CH (and migraines) are the result of a head injury, but it's pretty much impossible to prove this. It's a topic that has been discussed multiple times here where the general conclusion is that a head injury could possibly result in CH, but that is about all you can say.

I'd be interesting in hearing more about the experience of having a CH whilst having an MRI and a CT scan done. I've have both but never during a CH and I've no idea how I could stay still enough for the scans to be done. Kudos to you for doing this and potentially helping progress medical knowledge of how the brain changes / reacts during a CH.

Hopefully the D3 route helps you out where the more "conventional medication" route hasn't. With the Topamax, this has a reputation here being known as dopeymax as it seems to really impact mental processing ability for a lot of people with the result that whilst it can work well, on balance it isn't the right option.

Do get onto using medical oxygen cylinders and get as high a flow rate as you can. From experimenting with how quickly I aborted at 15lpm and 25lpm, the higher flow rate resulting in being pain free over twice as quick. One other option that quite a few people have done is to use welding oxygen which is effective for them in aborting CHs.

The link between CH and altitude is far from clear cut. For some people, flying will bring on a CH but I'd done several hundred flights in the last 5 years and it has never resulted in a CH (or a migraine). Certainly my migraines are very sensitive to storm systems, which defies logic as the pressure changes are a lot less than from flying.

And I'm really pleased that you're learning so much here, knowledge is priceless when dealing with CH.

Mish,

We can all relate to everything you have said about the progress of your CH, your search for triggers and talking to God. We've all done it.

I'm not surprised to hear that your D3 is low. Batch's regimen will sort that out. I would advise that for some, results are almost immediate, while for others it takes a bit longer. So don't despair or give up on it if it doesn't work straight away.

In my case it took a month to start feeling the benefits of D3. Now I only use the D3 regimen, which I will never stop, and Oxygen at 15L/min ( as I said before, I'm chronic, so 80/85% improvement is huge for me).

To help your Doctor with the O2 prescription, here is a copy of mine, which is for 15L/min, which he can change to 25L/min if as he sees fit. It's also a repeat for 9 months. I'm not suggesting he needs help wording a prescription, but it helped another member recently who was having trouble getting his O2 sorted.

Hope this helps,

Peter.
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Thank you so much, Peter. I will definitely pass that along at my next appointment. I'm really stressing out because this cycle has been one of the worst I've ever had and I think it may be the result of topamax withdrawals. I just got off of it 3 weeks ago. I've already used my weekly max dosage of the migranal, so I'm stuck with the pain until Monday. Has anyone else found anything that can help ease these in the meantime? I started the d3 & vitamin regimen, but I don't expect to see immediate results. So far I've had 5 attacks today and it's only 5:30pm here. My kitten did a big no no and chewed through my high flow cannula so I've had to switch to a regular one & it has rendered this machine completely useless. I'm desperate for anything over the counter that I can get to help me through this.

My significant other got me very expensive pit tickets to The Cure concert at the beginning of June so I'm really hoping to bust this cycle before then. I will be brokenhearted if I have to sell them. Any info is appreciated. I already called my neurologist & the soonest they can get me in is June 6th and the concert is before then. Right now I'm stuck with no working oxygen (unless I go to the ER) and only a handful of abortive ergot sprays per week. This pain is f#%$*@g maddening & I'm so sick of it. I just want my life back. Even if I could go back to having these 3 months out of the year, that would be a vast improvement & I'd be content.

Mish, a lot of people get some relief by chugging down a can of Red Bull or similar at the absolute first hint of a hit.

It's to do with the caffeine-taurine mix and may be worth a try.

Mish,

Brian's advice about the energy drink is worth a try. It sometimes worked for me, but you have to drink it at the very first sign of a CH and drink it as fast as you can.

Are you doing the load dosing of D3 as recommended by Batch? It's important to get 600,000 iu into you in the first 4/5 weeks to get your serum levels to the point where you start to feel the benefits.

Can your PCP not write the O2 prescription for you?

Keep positive,

Peter.

Hi Mish

Kittens are a lot of fun and can be a whole lot of trouble too!

Depending on the damage, you could try following Batch's instruction on filling a large bag full of oxygen and using a plastic bottle for the mouthpiece. It is a better option than not having access to oxygen.

Red Bull or any other energy drink with caffeine and taurine can help, as AussieBrian suggested,  just drink it quick when you feel a CH starting and it can for a lot of people reduce the pain level and duration.

For the concert, one option you would need to discuss with your doctor is to use a prednisione taper dose. This can act as a very effective short term preventive to cover you for the time it's on, but don't use prednisione long or medium term as it is severe on your body, especially the joints.

Very cool, I will try the energy drinks. I'm not very handy & that oxygen contraption looks very intimidating. I'm gonna wait until the s.o. gets home before I attempt that. I'm going to call & leave a message for my dr. on Monday & see what he can do about the O2 issue and possibly the prednisone as a short term solution for the concert.

I read somewhere that boosting serotonin can also help. Is there any merit to this? I happen to have some nature's way 5-HTP tablets in my medicine cabinet.

Thank you for the Red Bull tip! I tried it and it seems to have worked for me on the first go. Now I'm bouncing off the walls, but small price to pay for relief. It's definitely not something I could see myself doing every time, unless I get into marathon running or something. LoL

Mish,

I'm glad the energy drink helped. It is only an emergency, stop gap measure, but a handy one. I always have half-dozen in the fridge and a couple in the car.

I don't know much about Seratonin. As far as I know it's a naturally occurring chemical that lifts the mood, which is always a good thing, but its effectiveness against CH is not something I know about.

Perhaps it's Melatonin you've heard about. I take 10mg of Melatonin last thing at night and some here take 20mg. Melatonin is a naturally occurring chemical that helps us sleep and you can get it in a health store.

I find the flavoured, soluble one left to melt under the tongue the best, as it gets into the blood stream quicker.

It doesn't always guarantee a great night's sleep, but it can help. As you know, sleep deprivation is one of our biggest problems.

Best regards and good luck with the O2 Script.

Peter.

Hello, Mish.
In your first sentence you said your neurologist recommended this site. For that I have to say, Wow! A doctor that doesn't think he/she is a god. 99 percent of doctors would tell you not to believe anything on the Internet. They don't like the competition.

I just wanted to give a quick update. I'm on day 3 of the d3 loading dose and cofactor regimen and I'd like to report that I have only had one very mild CH today, otherwise I've been completely pain free. Yesterday was one of the worst days that I've ever had and I did find my old bottle of verapamil.  I was so desperate for relief last night that I decided to take one 120mg sr capsule. I'm not sure which one is giving me relief, or it could possibly be both, but it's so great to have a break from that pain. I'm not sure if I should continue to take the verapamil until I see my dr. next, but after dealing with the side effects from the topamax, the verapamil really doesn't seem so bad and I think I'm willing to give it another shot. Anyway, something is giving me drastic relief and that in & of itself is amazing.

Good news on a better day. It is very unlikely to be the verapamil since it normally takes 7 to 10 days for a verapamil dose to become effective plus 120mg is a very low dose with most people taking 360-480mg a day with some needing up to 1000mg a day.

So at the moment it is more likely to be the vitamin D3 which is doing it.

I'd be tempted to stick to just the D3 and to give that a go.

Mish,

According to my Doc, D3 + cofactors and Verapamil is not a good idea, although, as Mike says, the dose you took is very low. Verapamil will also cause your blood pressure to drop, so be careful.

Another point to consider. If you take both, you will not be able to definitely say which is the cause of your improvement.

I agree with Mike. Give the D3 a chance.

Best,

Peter.

It seems that I spoke too soon. My 6am came right on schedule today and with a vengeance. After an hour and a half of pacing, head banging (yes, this does actually seem to bring me some relief even though I know it's not healthy) and sobbing like a baby, begging for the pain to stop, I'm now in the end stages. The pain was so horrible that I did something that I probably shouldn't have done, but I just couldn't stand it anymore. I took my 11th spray of Migranal in a week. Anything to escape that horror, right? The worst part is that I can still feel it lurking in the background, though not as badly as before. I will continue the d3 regimen and stop taking verapamil. The (almost) pain free day was amazing and I never get those during an active cycle so hopefully something is working. I dunno. I'm pretty depressed. This is wearing me down and I just don't know what to do anymore. I want so desperately for this to end. I would cut off a limb if I thought it would stop the pain.

Hey Mish,

Sorry you're having such a rough time.  Approximately 5% of CHers who start the anti-inflammatory regimen experience and initial favorable response followed a few days later by some heavy CH hits.

I suspect this phenomenon is due to an imbalance in the availability of enzymes at the cellular level that are needed to hydroxylate vitamin D3...  CHers are almost always vitamin D3 deficient before starting this regimen and a magnesium deficiency is also very common. 

It appears the first few days of vitamin D3 deplete available magnesium and zinc at the cellular level that are needed to support the enzymatic processes that hydoxylate vitamin D3 and this results in a return of the CH beast.

Fortunately, these CH pass in a couple days if the CHer hangs tough and continues taking this regimen with all the cofactors.  Going on the 2-Week vitamin D3 loading schedule appears to minimize and in some cases eliminate this problem.

Increasing the magesium may also help.  Try taking one 400 mg magnesium gelcap in the morning with breakfast and a second with the evening meal for a few days.  Splitting the magnesium dose like this will help reduce the incidence of osmotic diarrhea.

The 3-month course of vitamin B 50 is also important as B12 and Folic Acid are also consumed in vitamin D3 metabolism.

Take care, hang in there and please keep us posted.

V/R, Batch

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There's a great support group in Denver. Check it out.

               Potter

I don't use facebook. I'm actually against it for personal reasons.

Mish C. wrote on May 23^rd, 2016 at 2:06pm:

I don't use facebook. I'm actually against it for personal reasons.

   Your loss.  They meet once a month
or so and just had Mitch Post speak about DALT.

                 Potter

Mish..I totally understand your frustration and getting depressed. I have been in cycle since last August and my hits have varied from 1 a day to every hour at night. I would not still be here if it wasn't for my O2. I use 15 LPM with the cluster O2 mask from this site. It will literally save your life. The hits may still come but with the pain only lasting a few minutes..life is livable. I think it's the pain we suffer that beats us down.

While you are waiting for the D3 regimen to work..push for the O2 and order the mask from here. Cry, demand..what ever it takes.

Do not give up..this too shall pass and know that we all here have been where you are now. If you need to vent..this is the place.

Take care and ignore Potter, he can be a bit testy at times.

Judy

Rumeke wrote on May 23^rd, 2016 at 9:42pm:

Mish..I totally understand your frustration and getting depressed. I have been in cycle since last August and my hits have varied from 1 a day to every hour at night. I would not still be here if it wasn't for my O2. I use 15 LPM with the cluster O2 mask from this site. It will literally save your life. The hits may still come but with the pain only lasting a few minutes..life is livable. I think it's the pain we suffer that beats us down. While you are waiting for the D3 regimen to work..push for the O2 and order the mask from here. Cry, demand..what ever it takes. Do not give up..this too shall pass and know that we all here have been where you are now. If you need to vent..this is the place. Take care and ignore Potter, he can be a bit testy at times. Judy

And informed.

            Potter

And opinionated.

     Brian.

Mish,

Judy is right. It's time to start shouting, crying, screaming and generally pushing hard for your O2.

Your Doctor should be treating your need as an urgent priority.

The squeaky wheel gets the grease!

Peter.

AussieBrian wrote on May 24^th, 2016 at 12:07am:

And opinionated.      Brian.

        Must be hell havin Potter rent that little place in your head.

                         Potter

Big dick syndrome aside, can I please vent a little? Sorry. I just feel like there were a few posts in there that were unnecessary & did nothing to help anyone. We are supposed to be helping one another.

I had to cut my d3 regimen to half. For the last 2 days, I have been vomiting nonstop and the other end was not fortunate either. Both ends. Headaches throughout, but not anywhere near as severe as before. As stated before, I do seem to be very sensitive to certain meds. I'm a very small woman. 5'4" and maybe 120, liberally.

Mish,

Sorry  hear you're having such a rough time. NEVER apologise for venting, it's not only allowed, it's encouraged.

I doubt if the D3 itself is the cause of vomiting and diahorrea, but it is possible that the Magnesium is.

Batch,  I note that you suggested a few days ago that Mish increase her the dose of Magnesium. Am I way off base with that suggestion?

Mish, any word on your O2 ?

Mind yourself,

Peter.

I left a message for my neuro. Waiting to hear back. No viable O2 as of yet. I've resorted to too many doses of my ergots. They work. If I get necrotic, so be it.

I can get more info about the Denver support group if you like.

                Potter

I've lost everything. My dream job, my ability to function normally. I'm a veteran who saved many lives, yet I can't even sort my own head (pain) out. It makes me feel so weak.

That would be ace, but I do not use facebook. As stated above, personal reasons. USAF loud & proud.

  Welcome home grunt.

           Potter

Tsgt here, so "grunt" is not something I've done in a long time, but thanks for the support.

Check your pm's.

       Potter

Hi Mish

  Congratulations on a bit of pain free time, and wishing you permanent PF time.

  As Verapamil is a taper drug and usually doesn't provide that kind of relief until a minimum of 240mg,  I'm thinking it probably didn't have anything to do with the single 120mg tab.

  My first PF day (in over a year) occurred when I hit that number . . .got as high as 480, then tapered back to 360.  I had 3 attacks that night, but had 02 to kill them quickly.

  I've been gone for a while and the new breathing method is new to me . .  . but that's what happens when you're 0ut-of-the-loop for a while.

  I'm a head trauma CHer, hit my head 1/01, attacks started.  When wife found this site, was having 6-8 attacks daily, 3-5 at night . . . a basket-case afraid of sleeping, eating, alone-time with young grandson and always that FEAR of the next one; When will it come?, How long will it last?, How bad will it be?

  I'm back to tell you and others that I've been PF for 2 1/2 years using the D3 regimen (Thanks Batch)

  I used to keep 20 "E" tanks of 02.  Still keep a few in case I happen across a CHer who's unaware of how effective it can be if used properly.

  Keep reading .  .  . keep asking .  .   . keep posting.  You've found the motherlode of CH info/caring/sharing.


  Be Safe,

   PFDANs

     Richard