So I'm introducing myself at 4:30am from an emergency room in Atlanta. The medicine finally started to kick in for my wife and she is resting now.

This started for the very first time on the 4th of July. We were visiting Colorado and ran a 5k that morning . After that the brewery sponsor was giving free beer so we each had one. On our drive home, it hit. (About 10am) She wasn't quite writhing in pain but she was crying and whimpering. It went away after a Percocet and 2 hours of agony. Pain was left sided , behind her eye up to the top of her head.

She had one similar the next evening, then had two days off. Since last Tuesday she has woken up like clockwork every other night between 1 and 2 in the morning with this headache. Tonight was the worst which is why we are in the ER. She has ceased alcohol but it hasn't made a difference.

I have a few questions based on what I've been reading. Any help is greatly appreciated:

-Although she is uninsured until her new job starts in Sept, we are going to try and get temp insurance and get her to a GP ASAP. However, it seems like she will most certainly get another one before we can go. I've read up on the "alternatives", and she is comfortable with that. I can't watch her go through this again and not try something to help her. Would you guys recommend that we try some type of alternative treatment or "busting" before we get an official diagnosis?

-Does anyone have any GP or specialist recommendations in the Atl area?

- From what I've read, when you get CH they are usually there for the long term in some capacity. Does anyone get just one cluster and never see it again? (God I hope so)

-The pain she has is severe, but she can talk and form thoughts so it doesn't seem equal to some of the videos I've seen with screaming and wailing. Do all CH eventually get that bad, regardless? Or is it possible for pain to always be lesser than max with some people?

Thanks everyone for any feedback.

Just to follow up, she is an otherwise healthy 24 year old woman. Quit smoking 5 years ago . Drinks only occasionally. Relatively active and we eat fairly clean.

Before you leave the ER they will tell her to have a follow up appointment with her gp or neurologist . Tell them you need a list of neurologists(preferably a headache specialist) in the area since you are new there. Pain medicine will not help her it most likely ran its course. Read more on this site about oxygen therapy and vitamin D3. The nature of clusters is that you do not have just one hence the name.  Est of luck and read as much as you can here.

Hi and welcome, just sorry that you had to come here looking for answers for what your wife is going through.

First off, it is essential to get a definitive diagnosis from a headache specialist. Whilst the symptoms you describe sound consistent with CH there are multiple headache types that give either the same or very similar symptoms plus there are other potential causes which need to be ruled out too, like tumours. This is a complex area of medicine that is beyond the skills and experience of most GPs and many neurologists, so ask to ensure that they have CH experience.

If it is CH then pain medication is not the answer. Even the strongest narcotics do not touch the pain of a CH and there are issues such as addicition, needing ever increasing doses and medication rebound headaches. Many people here, myself included, have been sent via this route so we know from experience.

When CH first starts it doesn't always follow the classical symptoms, it can take days, weeks, months or years to develop, so if a symtom like the pain intensity doesn't quite match what you've read about then this alone doesn't rule CH out. This is another reason why you need someone with experience with CH to do the diagnosis. I remember my first few CH being what I thought were pretty bad, but with experience they were actually pretty mild, which is fairly common. Similarly they need not be quite as regular as they can be too at first.

The pain level also does vary between CHs, some can be relatively mild by CH standards but some can be pretty horrible. We tend to use the Kip scale - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

She should avoid alcohol, it is a very common CH trigger. But even avoiding it, if it is CH then she will still get them.

Whilst it is very tempting to try busting or something else before you get a diagnosis, it isn't a simple choice as it might not be CH and doing something like busting might not be advised for all possible causes of the symptoms.

So I'd explore all the options you have to get a diagnosis as soon as you can. Then she can start the correct treatment for whatever it is.

CH frequency seems to vary between people. Some are chronic where they get it year around and at the other extreme there are people who get a cycle once every few years with most people somewhere between. It is unlikely she will just get a single cycle. So it is well worth spending the time sorting out an effective treament plan for her.

I hope that this answers some of your questions. Keep reading and ask all the questions you can think of. Hope you get a diagnosis for your wife soon. We've all been through the process of getting a diagnosis, so it is just one of the things we can empathise with.

There is a 'cluster quiz' blue button on the left side of your screen. Have wife take the quiz and let us know the results.

100% agreement with Mike NZ! This is not a problem for self-diagnosis & treatment.

Don't waste your limited $ with GPs. You are blessed to be in Atlanta so you can find a headache specialist.
======
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
====================
Print the PDF file, below. Any doc you see should be working from this list of the most commonly used meds for Cluster. And it's a good tool to guide you discussions with any doc.
=======
Besides reading here, explore these sites for more understanding.


Thre sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
-------
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
==================
The initial presentation of symptoms can change marekedly for weeks to several months before they settled down, i.e., don't panic with changes but keep the doc informed.
=====
You may expect, from a skilled doc, a three step treatment program.
  1. A brief period of a steroid which will kill attacks within a few hours but then tapered off as,
  2. A long acting med with blocks/reduces attacks is started but takes a few days to become fully effective.
  3. And then, for long tem use, a fast acting abortive med which kills attacks which sneak past #2.

You'll see these meds reviewed in the PDF file.

As painful as Cluster are, there is no danger--permanent disability, etc. Once you get a good treatment program working, the majority of us are able to live quite normal lives.

BUT, immediately: NO alcohol. It's a powerful trigger for an attack. The role of smoking is not clear but tapering down/off is a good idea if she can do it without too much stress.

Assuming it's Cluster, you'll be with us for a long time so keep on reading.

---

I know you're afraid, and your wife is afraid. We all were (are) afraid of the pain we know will come. The advice above is good and you do need a diagnosis. Having said that, however, I can see no harm in trying to alleviate the pain (if they are CHs) by using two common aids that help us cope: energy drinks and O2. If your wife has a tumor, or some other cluster like condition, I doubt these will help or interfere with a proper Dx. But if they are CHs, they could be just what is needed to get through this initial period. Search this site for info on both. blessings. lance

As wimsey said, before you get a proper diagnosis from a neuro (and you must do that) there are three drug free options which may help.

The first is oxygen, BUT You need ha high flow rate of at least 15 litres per minute(25 is better) and a non re-breather mask. Both these factors are important and the oxygen won't work if you get either wrong. Low flow won't work. Nose canula or wrong mask won't  work.

Second, try a red bull. At the very first sign of pain (don't wait till it ramps up) gulp down a red bull or similar energy drink. It's the combination of caffiene and taurine in a sudden hit which does the trick, so any energy drink with those ingredients will do. It doesn't help every one, but lots of folks have found relief so worth a try.

Also, check out these boards for posts by "Batch" for info on the vitamin D3 regime that has given relief to so many.

If it is CH (and I say IF) then it probably wasn't the perocet that worked as pain killers are useless for CH. Not even morphine. You need vasoconstricters to abort this pain. More likely that her attack came to an end by it's self. A typical CH lasts any where from 20 minutes to three hours although there are many variations outside of those numbers.
I myself had one once that lasted 16 hours (just the one thank god) but mostly they are between 30 mins and an hour - typically 45mins for me. It can change though, so NEVER get complacent. You cannot ever predict what this thing will do, except that it will always come back eventually.

Episodic CH comes in cycles which generally last a few weeks and then remission which can be a few weeks to years. With chronic CH remissions are much shorter, or non existant. VERY few (lucky) people only ever have one episode. CH is a life long condition. Not every attack will be as bad as you've seen in the videos, but you never get 2 the same. I've had a few like that, but also some mild ones that, although painful I can still function. Most of mine are somewhere between the two.

No one here can give you a diagnosis, but my 2 cents- from what you describe it does sound like CH to me although there are other conditions which mimic CH. Google "trigeminal autonomic cephalgia". When you do see a doctor it may give you a head start as most of us jump through hoops for years trying to get a diagnosis. She should also get a scan to rule out anything else.

Keep coming back here and you'll find all the support you need, but your wife must see a specialist. They are the only ones who can make the correct diagnosis, and give you the correct treatment.

Hope I've clarified a few things for you. Let us know how you get along.
Regards
Maz.

Took the quiz.  Every answer was consistent with CH besides the droopy eye.  She hasn't gotten that yet.

Thanks for the help everyone.  We finally got out of the ER at about 5AM.  They put her on an IV with pain killers (forgot which kind, but they said non-narcotic.  Fioricet maybe?), nausea meds, and a benadryl-like med.  As soon as they plugged the IV in her, she started to feel some relief.  (However, this was 3 hours into the headache, so it was probably on her way out anyway)

She is home resting now while I am at work.  I started talking to a coworker about her symptoms, and he immediately said "cluster headaches".  Apparently he has been a sufferer for 25+ years and I never knew it.  He mentioned he has had great success with Verapamil.  (Obviously that is something for down the line after a diagnosis, but just a side note)

That being said, we are scrambling like hell to try and get her some temporary insurance so we can get her into a specialist.  She is fully insured by her new employer on Sept 1st.  We would never try and self diagnose in place of seeing a professional. That being said, I appreciate the feedback on anything else we can do in the meantime.  I will suggest the energy drink idea to her since that shouldn't interfere with a diagnosis.  The idea of doing NOTHING until we see someone is unfathomable to me.

I am doing research while I work, so I'm trying to search as much as I can on my own as to not ask redundant questions.  That being said, is it even possible to get her an O2 tank and necessary mask without doctor's orders?  I frankly don't care about the cost at this point.  I'd clear my bank account for O2 if it would alleviate some of the agony she went through last night. 

Not every one gets all the symptoms so your wife may never experience the droopy eyelid.
They ar just a list of symptoms that we CAN get, and are all common to CH.

There is a highlighted yellow tab on the left of your screen called "oxygen info" which will tell you all you need to know. A lot of people use welders oxygen (but don't tell the suppliers what you want it for)  and buy their own mask and regulator. Masks can be bought reasonably from "CH.com store" also highlighted yellow.

Oxygen is the first line of defence for almost all of us. It's completely drug free and won't interfere with any other meds, or getting a diagnosis. It's miracle juice.

Verapamil is taken as a preventative. Sumatriptan (also called imigran or imitrex) is one of the best abortives. It comes in pill form which is not too good as it takes too long to get in your system, Nasal spray (haven't tried that) and auto injections which are a life saver. They will abort a big one in a few minutes. Oxygen and sumatriptan are both vasoconstricters. CH is caused by a dilated blood vessel which presses on the trigeminal nerve. Vasoconstrictors will shrink it back to its normal size, thus taking the pressure off.
You could also try ice packs, or a very hot shower. Doesn't work for me but does for some.

It's early days to be giving meds advice as you haven't seen a doctor yet, but knowledge is power, and it may help you speed things up a little.

Finally, thank you for caring so much about your wifes condition. No one can really understand this pain and many of us are accused of making it up or attention seeking. I've been laughed at, told to pull myself together because nothing is that bad, and my best friend called me a drama queen. I replaced her with sumatriptan. We all need our supporters so much, but please don't be offended if she sends you away. Personally I like to be left alone with my misery, but I know my husband is hovering outside the room just waiting for me to call him and I know he would go to the ends of the earth to help me if he could. He felt rejected at first when I didn't want a massage, or my head rubbed but he understands now. If your wife wants you to fuss over her then thats fine, but if she wants to be alone thats fine too. Just be there as much as she wants because whatever she says - she does need you. More than ever.

So a little good news...we were able to get my wife added to my insurance and have an appointment for her to see a headache specialist tomorrow morning.  Going to spend the evening writing down as much as we can remember about her headache patterns, times, triggers, etc.

In the meantime, she is due for a night off if they keep their pattern of every other night.  I truly hope that's the case. 

Just in case, we are trying to prepare the best we can with what little we have to work with.  I wasn't able to get an oxygen tank and it seemed like a little much to force the issue considering she can bug her doc for it tomorrow morning.

We did buy Red Bulls and she got her script filled for Fioricet.  I know it might not be a huge help but if it can perhaps knock the pain down a few ounces or shorten it slightly, then that is all we can hope for. 

So I'm thinking she can take 2 Fioricet and down a Red Bull the moment she wakes up feeling it?  Any other household items she could add to the mix?  Like I said, we aren't trying to self diagnose but she will be in desperation mode for any relief if it strikes again tonight.

Frozen peas are our friends. She may get some relief holding a bag of them to the side of her head or the back of her neck.

Thanks for caring, mate. It matters to us.

I usually want to be left alone during attacks.
My wife is quite stubborn about not leaving my side.
Having said that,I know how lucky I am to receive the support from my spouse that she gives.
Having someone who is willing to face the beast with you is just as good as the medication used to combat it.
I salute you sir.
And good luck with your appointment tommorow.
Keep us posted

I like to be left alone, too.

I am so sorry for you and your wife.  I find the diary to be a really good idea.

I initially thought that pain killers were working for me, but then I figured out that the headaches were simply running their course.

Hang in there.  It can be a rough ride.

Good luck with the headache specialist.

Hi Mj
So glad your wife has an early appointment with a specialist. She's half way there now.It took me over 4 years to get to that stage.

Press for the 02. If she is left with a lingering, dull ache the fioricet will help with that. Most pain meds, although they don't work with CH, will help to clear up the lingering "left overs".

Tell your wife, there are people all over the world thinking of her now. We're like a family.
Good luck tomorrow and please come back and let us know how you get on.
Maz.

So I have mixed feelings at this point.  I had multiple meetings at work so I was unable to go with her to the doctor's appointment.

She was only able to see the Nurse Practitioner.  (She was offered to wait a bit for the doctor, which she should have done.  But anyway...)

The NP said that it was highly unlikely these were CH, and sounded much more like migraines.  She said something to the effect of..."if you had Cluster Headaches you probably would have hurt/killed yourself by now".  (I wish I was there to hear the comment, because it would have pissed me off)  She asked about the fact that they were happening at 1:30AM every other morning and was told "migraines can do that too".   So first let me ask, is that the case??

So here was her headache schedule.  This is was what she brought the NP.  Also including her pain scale from 1-10.  (Keep in mind, these headaches are new to her so her "10" might be a little bit more overstated than some people's "10".  Although she was crying and moaning with her "10".  (Just for consistency, 1:30AM is technically the date after but I'm putting the date for whatever night it was)

(8)July 4th - 9:30AM after a 5K and 1 beer
(7)July 5th - 7:30PM after 1 glass of wine
(6)July 8th - 1:30AM no alcohol
(6)July 10th - 1:30AM no alcohol
(7)July 12th - 11:30PM after 1 margarita (bad idea)
(10)July 14th - 1:30AM - No alcohol
July 16th????

Any thoughts are appreciated.  I guess we will see what happens tonight.  To me if I can predict a 1:30AM headache then we might need to call back and at least demand to speak to the doc via phone.

Yes, your wife needs to see a doctor not a nurse. The doctors themselves know little enough about this let alone a nurse.

Some folks with CH have been known to hurt themselves or worse (this disease was once called suicide headache). I've had very dark thoughts myself at times - but I didn't actually do it !!!  Just because you may, doesn't mean you will. I've never heard anything so stupid, except when my own neuro told me women don't get clusters, which caused me years of unnecessary pain with the wrong meds.

Tell them you are not happy being diagnosed by someone not qualified to do so, and insist on seeing the doctor.

I don't suffer from migraine so I can't be sure, but I think it's one long headache that can last hours.Sufferers need to lie  down in the dark as still as possible because movement makes it worse.  CHers can't sit still, and we pace writhe, and rock. We call it dancing with the devil.

Get on their case. You are entitled to see a qualified doctor.
Maz.

Your wife clearly needs to see a doctor as the nurse just does not know what she is talking about with CH. If everyone with CH hurt themselves or killed themselves then there would be nobody here! Although there have been some people who have done which is reflected in the alternative name for CH which is suicide headaches.

One of the diagnostic questions that my neuro asked was that in the middle of a headache if she handed me a loaded gun, would I consider using it. She has found that just about nobody without CH would consider it and those with CH tend to indicate at least the thought of using it for some CHs. This isn't a solid test but along with other diagnostic work it helps rule somethings in or out.

I'm one of those lucky enough to get migraines and CH. However my migraines have never followed a predictable pattern as described by your diary entries. Equally I've never read about migraines following a similar pattern, although that need not be definitive.


Quote:

(8)July 4th - 9:30AM after a 5K and 1 beer (7)July 5th - 7:30PM after 1 glass of wine (6)July 8th - 1:30AM no alcohol (6)July 10th - 1:30AM no alcohol (7)July 12th - 11:30PM after 1 margarita (bad idea) (10)July 14th - 1:30AM - No alcohol July 16th????

There are two clear patterns here, the headaches seem to be triggered by alcohol at any time of the day or they happen at 1.30am to a consistent timing. This pattern is pretty common for those with CH where for most alcohol whilst in cycle will bring on a CH plus there are the regular nightly CHs (although people can have multiple ones any time during the day / night).

Your wife really should skip the alcohol. Has she had any in that time period that didn't result in a CH?

welcome you and thank you for caring about your wife.

The suggestions they have here can help, oxygen helped me most.

i am a woman with CH and migraines, they are two different things.

with CH i often get the sudden single big drip from one nostril, but not everybody has that symptom.

good luck, and both of you take a deep breath!

this place is a treasure trove, and all the people here are just tops!

:)

Thanks for the responses all.  I am currently sitting in the living room trying desperately to get some work done while my wife is in the bedroom with another headache.  Luckily (knock on wood) this one hasn't been as bad.  It started at 7:45PM.  It started while she was finishing cooking dinner.  10 minutes later, she was on her butt.  The NP had prescribed Imitrex pills for the "migraines", so she immediately took one.  30 minutes later, the pain decreased a bit but did not quite subside.

So the issue is this:  My wife is quite stubborn, and I am a registered hypochondriac.  I have been self-diagnosed with a brain tumor, colon cancer, Sister Mary Joseph Nodule (look it up), Parkinsons, multiple heart attacks, a stomach ulcer, and a daily self-diagnosis of ADD.  (Somehow...I'm still here despite my mostly imaginary ailments)

She isn't the type to get on the internet and do much research.  She definitely is not the discussion forum type.  She is of the opinion that the NP does this for a living, so obviously she knows more than her hypochondriac husband.  (She says this all in a very loving way...thanking me for caring so much but politely declining my diagnosis) 

By the way, the NP's reasoning for diagnosing migraines is as follows:

-She is a woman and the VAST majority of CH sufferers are men. (It seems to me that this pattern is being perpetuated by NP's that won't make a diagnosis for a woman because women get said condition less often...but I digress)

-She has sensitivity to light, nausea, and the headache is one sided which are all "classic migraine symptoms"

-Cluster headaches are so rare in general that the odds of having them are very low. 

Like I said, I disagree with how this was done, but part of me wants to sit and dream for a moment that it might be possible for these to really be migraines, or that they might go away on their own.  However, if they don't, at the very least I can take the smallest comfort that her (possible) late diagnosis would not be life threatening.  Although that comfort is mostly wiped out by seeing her in pain.  I think the key is for her to start doing her own research.  I will be asking her to do that once she is feeling better.

Thanks for the help you guys.  Will keep everyone updated.

I am a woman. I have CH. I exist. Oxygen stops my pain.

nurses are just people. each one is a fallible human who came to work today and did their best and ultimately goes home and is not suffering this pain.

You can do it! I am sure you are overwhelmed by this whole deal, so take a deep breath and take care of yourself too, and whatever you do don't panic.

none of us are qualified to diagnose, the best strategy is to start getting tests under supervision of headache experts, and start ruling things out. so i totally agree to not *assume* you know what she has. none of us know.

good luck!

Mjedwards409 wrote on Jul 16^th, 2014 at 9:03pm:

She isn't the type to get on the internet and do much research.  She definitely is not the discussion forum type.  She is of the opinion that the NP does this for a living, so obviously she knows more than her hypochondriac husband.  (She says this all in a very loving way...thanking me for caring so much but politely declining my diagnosis)  By the way, the NP's reasoning for diagnosing migraines is as follows: -She is a woman and the VAST majority of CH sufferers are men. (It seems to me that this pattern is being perpetuated by NP's that won't make a diagnosis for a woman because women get said condition less often...but I digress) -She has sensitivity to light, nausea, and the headache is one sided which are all "classic migraine symptoms" -Cluster headaches are so rare in general that the odds of having them are very low.

If we each had a dollar for every time we heard a medical professional get something wrong around their knowledge of CH many of us would be pretty wealthy.

Have a look at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It has some pretty interesting statistics.

It took 42% of people eventually diagnosed with CH over 5 years to get a correct diagnosis and for 22% of people 10+ years. You can imagine how many doctors they saw in that time who got it wrong.

Just because CH isn't as common as it is in men doesn't rule out it being what she has. Similarly breast cancer is very rare for men, but we can still get it.

The statistics show 36% of people with CH having nausea, 48% photophobic (light sensitive) and 42% audiophobic (sound sensitive) plus 21% get aura. All of these are "classic" migraine symptoms but it doesn't exclude CH just as it is possible to have migraines without all of these too (I've had hundreds of migraines but aura only twice).

CH only rarely affects both sides of the head, so again that is something that is common with migraine, so it does not rule either out or in.

CH is rare, but not that rare, with around one person in a thousand being affected.

Just because something is rare doesn't mean it can't happen, as any lottery winner will tell you.

Did the NP do any tests or order them? It is normal to have an MRI or CT scan to rule out potential causes of the same symptoms as this will show up things like tumours. There have been several posts to the forums where someone has appeared to have CH symptoms and it has turned to be other things including a slow brain bleed and brain cancers.

I agree with everything MikeNZ said, especially about getting CT / MRI.

Also I want to apologize for my tone being serious - you're hearing the voice of someone who suffered too long. I really hope she doesn't have CH, and that it stops. But if for some reason my experience can save someone from the pain I went through, I want you to know it is possible for women to have migraines *and* CH.

The only way to know is to get the various tests and start ruling things out.

Wishing you all the best.

:)

I agree with icepick, I too can sound overly serious and angry at times. I get very emotional when I think of people in unnecessary pain. Especially when they do everything they can to get help and it doesn't come. The help is out there and my heart breaks when I hear of people who just can't get it, because of the incompetance of the medical profession. I feel their pain - I was trying unsuccessfully for 5 years to get a diagnosis with no meds.

It impacts seriously on all other areas of life too - work, relationships etc, so even when you are not in a cycle the ramifications of this thing is always there.

Yes it's true CH is very rare, and even rarer in women, but we DO still get it. I don't know how many women come to these boards alone, not to mention other sites and forums.

Your NP doesn't do it for a living - she's a general nurse and quite possibly this is the first potential case of CH she's ever seen. She probably got her info from a short paragraph on the internet that she looked up quicky while your wife was there. That's what they all do. WE are the ones who do it for a living. We take it to work, it's in our marriages and friendships, we get up with it and go to bed with it, even when not in cycle. We are not doctors or even NPs but we are experts on CH. We have to be, because they are not.

If your wife is not the forum type (I wasn't till I came here) at least try to get her to read them, even if she doesn't want to join in. Would she be willing to talk privately? If so send me a PM. I'll even give you my phone number although I'm in the UK so that may not be practical, but the offer is there. She may not trust your advice, or ours, and it's her pain so she must deal with it in a way she's comfortable with, but if she's anything like the rest of us, eventually she'll come round and be open to advice. Most of us would try anything once when that pain comes around.

One last thing. She has been prescribed imitrex pills which is a step in the right direction. If she can get that prescription changed to auto injections it would be much better. As you've discovered already the pill take 30 minutes to get into your system and only reduce the severity of the pain. The injections will abort the worst CH completely in a few minutes.

Tell her we're all thinking of her, and waiting for her to join us.
Take care
Maz.

So the updated schedule is:

(8)July 4th - 9:30AM after a 5K and 1 beer
(7)July 5th - 7:30PM after 1 glass of wine
(6)July 8th - 1:30AM no alcohol
(6)July 10th - 1:30AM no alcohol
(7)July 12th - 11:30PM after 1 margarita (bad idea)
(10)July 14th - 1:30AM - No alcohol
(7)July 16th - 7:30PM (After 5 min nap / Oral imitrex decreased to a 4)
(8)July 17th - 9:30AM (No noticeable triggers / Oral imitrex decreased to a 4)

I came home from work this morning when this one started and told her we were getting back in to see the actual doctor this time ASAP.  I talked to the NP on the phone for about 15 mins before I finally convinced her to schedule something with the doc.  Unfortunately the lead headache specialist is completely booked solid today and tomorrow with a vacation coming up next week.  We did however get an appointment at 1:00PM today to see the doctor that deals with headaches but is their lead seizure doc.  Not ideal, but he has access to consult with the lead headache doc who will be in the building. 

We are just going to keep bugging people until we get some help.  The NP said "well maybe you just need to start going to the ER and get the IV's when they get bad" to which I replied "could you afford multiple trips to the ER per week?"

So we are going back in today.  Thank goodness that oral imitrex seems to be bringing the pain down enough to keep her sane, but I know that won't last forever.  My fear is that I know doctor's become insanely irritated when a patient (or significant other) starts dropping the "well I read on the internet..." line.  Oh well...wish us luck.  Will battle for the oxygen as hard as I can.  Any tips on having this conversation without turning the doctor off so much that he isn't even interested in helping would be much appreciated.

They can be arrogant swines. Some of them think they're god, my own neuro being one. When I told him about this site he sneered and told me people talk a load of rubbish and if I continue here I will only be mislead. This, from the man who has done absolutely nothing to help me.

On the other hand, there are 2 GPs that I see who are totally different.One of them openly admits that I know more about CH than she does, and although she hasn't actually offered me anything helpful she's been willing to prescribe anything I've asked for. The other guy, when I told him I'd joined a support group he said "good idea, you'll learn a lot from other people with the condition". So they are not all bad.

You haven't met your specialist yet so you don't know what he's like. Maybe grovel a little and say it was clear from your research that you needed to see a specialist so you've brought your findings for his consideration.You only turned to the internet because you were sooooooooo desperate, ( a few tears here). You are living in total fear day after day of what is happening, it's ruining your life, etc etc.

Well, that's what I did and it did me no good at all with the neuro. The GP's listened though. All you can really do is play it by ear and say what seems right at the time. I would hate my method to make things worse for you. Many here have absolutely brilliant specialists helping them so you may be pleasantly surprised. I hope so. If it feels right to do so, press for the 02 and imitrex injections. They will change your wifes life.

ER isn't the answer. You need specialist help, not general emergency medicine.

Keep us posted. Hope she gets the help she needs.
Maz.

Good God....First let me say I'm very sorry for what all of you guys have to go through with these specialists.  It's almost like they are trying everything in their power not to consider the mythical Cluster Headache as even being an option.

First off, the doc was a good man, and thorough.  8-)

Anyhow, moving on for those of you who don't get the reference...He really was very focused on detail and studied her headache pattern very closely, asked a ton of questions about the characteristics of the headaches themselves, and generally was not in any type of rush to get the appointment over with.  This moves him up at least a notch in my book compared to many docs I've seen personally.  (Which puts him at notch 1)

That being said, he did use the word "cluster" to describe the patterns and admitted it did not sound like regular migraines.  (We are getting a little closer)  However, his diagnosis was Chronic Paroxysmal Hemicrania.  When I asked him if CH was a possibility, he said "no, because CH are mostly in men and CPH happens mostly in women".  I immediately thought, "oh God, here we go again".  My wife gave me the "don't push the issue" look.  So needless to say, Oxygen was not something he saw a need for. 

He prescribed a 7 day Prednisone cycle, tapering off the last few days.  I remembered this also being a route that has worked for a few episodic CH sufferers so I figured we'd roll with that, along with the oral Imitrex (which truly has been working)

The doctor also ordered an MRI to rule out anything more serious, which I was glad for.  She has a follow up appointment with the lead headache specialist in 3 weeks.  If the Prednisone doesn't have the desired effect, we will push even harder for O2 then. If they still refuse, I'll just have to get her some "black market" O2. 

As always, thanks everyone for the help....   

Interesting that the doctor diagnosed CPH and didn't prescribe indomethicin, the standard practice with absolute success.

Jeeeeeez, it never ceases to amaze me.  They use the words "mostly" and "rare" but don't seem to understand what the words mean. Mostly doesn't mean never, and rare doesn't mean non existant.

As Brian said, if he thinks she has PHC then why on earth didn't he prescribe indomethicin.
It's the first line of treatment for PHC and works absolutely every time. PHC and CH are very similar and difficult to tell apart and Indomethicin is often used (as it was for me) as a diagnostic aid. If it doesn't work, then it's not PHC.

The thing is, the pred probably will work for now and when she has the follow up appointment in 3 weeks everything will be hunky dory. But it's temporary and soon she'll be back to square one. A pred taper should be used for relief while a preventative med (like verapamil) is kicking in. And she still needs an abortive for the ones that sneak through. Your wifes condition may well be PHC, but if it is , then he's not treating her for it properly.  I'm pretty sure (although not 100% certain) that 02 works for PHC too. Perhaps someone will come along to confirm or deny that.

I take it the follow up in 3 weeks is with a different doc. Maybe he'll do better. You said imitrex has had a positive outcome (somewhat). But imitrex doesn't work for PHC and indomethicin doesn't work for CH. It's as simple as that.

I will just add that if she does get indomethicin she absolutely must get something to protect her stomach, or she'll end up with serious damage to the stomach lining, and she doesn't need that. CH or PHC is quite enough for anyone.

Keep us posted, and good luck with your next appointment.
Maz.

The diagnosis of Chronic Paroxysmal Hemicrania seems to not quite fit with the facts. Looking at the diagnostic guidelines from the International Headache Society:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Quote:

A.    At least 20 attacks fulfilling criteria B-D B.    Attacks of severe unilateral orbital, supraorbital or temporal pain lasting 2-30 minutes C.    Headache is accompanied by at least one of the following:         ipsilateral conjunctival injection and/or lacrimation         ipsilateral nasal congestion and/or rhinorrhoea         ipsilateral eyelid oedema         ipsilateral forehead and facial sweating         ipsilateral miosis and/or ptosis D.    Attacks have a frequency above 5 per day for more than half of the time, although periods with lower frequency may occur E.    Attacks are prevented completely by therapeutic doses of indomethacin1 F.    Not attributed to another disorder2

There isn't 20 attacks in the headache diary, so A isn't, yet?. For B the pain duration mentioned is longer than the 2-30 minutes. For D the headache diary shows no examples of multiple attacks per day. For E, as Brian commentated, indomethacin hasn't been proscribed to evaluate this.

And for the "chronic" part of the diagnosis, this again does not meet the IHS guidelines as they have not been going on for over a year:

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Quote:

A.    Attacks fulfilling criteria A-F for 3.2 Paroxysmal hemicrania B.    Attacks recur over >1 year without remission periods or with remission periods lasting <1 month

We just want your wife to get an accurate diagnosis as that will result in her being able to get the correct treatment she needs.

Now if it is actually CH then the prednisione may be effective in blocking the headaches for a few days. It is normally used as a short term preventive whilst a longer term preventive, typically verapamil, is started as it takes about 7-10 days for it to build up to an effective level.

If she is given indomethacin it can result in stomach issues, e.g. ulcers and bleeds, so it is often given with something to help protect the stomach lining.

You also said in an earlier post:

Quote:

We are just going to keep bugging people until we get some help

This really is what is needed with something like this where the medical system never seems to move at the speed you need it to when someone is going through a whole lot of pain.

I am so grateful for the updates, thank you, and I'm so glad you got the prednisone.

Everything maz said has been my experience too.

One doc can't know everything, second opinions are important.

You must be your own advocate. nobody else will care as much as you. even though that is what you pay them for, lol.

so like people say here, be cautious, and fact check things like test results, and contraindications of all medicines.

Keep trying, you're doing great!

:)

hi mjedwards409,
                   you've come to the right place !!
Hey, the imitrex tablets were all I was given at the start, I wasn't aware of the injectable type.  They did work for me, I have the 50 mg range. I found that when in a full cycle, they did give me rebound headaches. the trick is, popping a pill, the second a symptom appears, as you know they take about 20 minutes to kick in. What I did was, swig down an ice cold red bull if you miss the first signal, followed by, 5 minutes later an imitrex pill. generally for me, it would clear in 10 minutes.  There's only a small margin of time where you ask yourself, is that a ch ? then if you doubt it and wait,  BAM, to late. But the redbull gave me some time, sometimes I timed it so well, I only got a bad shadow. But, the rebound headaches di come back to haunt me towards the end of a cycle.
Red bull's  are our friends !!!  at least till you get to that specialist and organise some 02 and injectable imitrex if needed.
Seems like your well on your way here, hopefully, soon you'll be fully prepared and informed.
goodluck
col

wrote on Jul 17^th, 2014 at 11:54pm:

What I did was, swig down an ice cold red bull if you miss the first signal, followed by, 5 minutes later an imitrex pill.

Thanks for the tip.  We do have Red Bulls sitting by the bed, but they are room temp.  Any reason they should actually be cold?  She is already very sensitive and gets head and tooth aches from cold food and drinks.

if she has tooth sensitivity, a dentist may be something to consider. however this is like finding a good car mechanic lol.

good luck and my greatest sympathy

:)

Thanks ice!

Knock on wood, but she has been PF since her headache at 9:30AM yesterday.  Either the headahces took a day off or the prednisone is already going into effect.  Here's hoping that the taper cycle ends this cluster.  (Whether they are truly CH or not)  We have plenty of Imitrex and Red Bulls ready to go if anything pops up. 

Even if they went away this time, I know they would most likely come back at some point.  That being said, we will be in a much better financial position even six months from now. (Wife is between jobs and starts a new one in September)  So if they popped back up a few months down the line I would just buy O2 right off the bat and not worry about a script.

Here's hoping these don't come back anytime soon!

Good to hear she's had a reprieve.
Not to sound mean, but they could just as easily come roaring back as the prednisone dosage tapers down.
I would continue to avoid alcohol for awhile, and keep your meds close by.
The beast is crafty,and a CH could still break thru the Pred. Taper.
I suggest you search here for Batch and threads on the d-3 regimen.
You could start this as a preventative med until your next appointment.
I'm sure many here would agree.
Has done wonders for lots here.

Not that I want her to deal any pain at all, but if we start the d-3 before our next appointment, wouldn't it make it that much harder to get a diagnosis if it works?

When is your appointment again? Three weeks is a long time when you are suffering.
I'm assuming your Pred taper is 60-80 mgs a day and tapering down over two weeks.
Most tapers are accompanied with a preventative like verapamil.
I was misdiagnosed with acute sinus infections three times by 3 different doctors(2 NP's and 1 GP)
Before my wife found CH info online.
Five years without a proper diagnosis before being confirmed by my neuro/HA .
Doesn't hurt to be prepared .

Next apt is in 3 weeks. Pred taper is a week long.

I would think if the d-3 works it would diagnose the problem .
I don't know man.
I see your point about the diagnosis.
I'm just thinking of the pain relief.
The info is worth printing out and sharing with the dr.
You said you're having luck with the pills.
They didn't help me much.
Usually the attack was over by the time it kicked in for me.
I've tried verapamil and d-3 and had good luck with both.
Is this a HA specialist you're seeing next?

I'm so glad she got a PF break!!!

you're right, if she gets a break from the pred, any pain free time is good, no matter why. still will be good to figure out correct diagnosis of course, but in the meantime, I hope the prednisone works regardless of what it is.

They are right, CH can come back after pred.

these kind folks have given me a lot of good ideas to try, and i only can do one at a time, so we all understand you're doing your best, and if we give you tons of info it's not because we expect you to do it all at once. it's just to share anything that could possibly help, for your current & future reference.

wishing you all the best.

What she said.
LOL

Keep us posted.
Keep your HA diary going.
And read a lot on this site.
Helped me immensely .

You will find help here.
We are all a family.

Some of us are even like that crazy uncle everyone has.

I think you've got a golden opportunity here, to go in and get a vit d3 blood test !!!  that will tell you.
My experience from prednisone is that as soon as you taper off, bam its back.  The vit d3 regime, effectively raises our d levels, the magnesium, fish oil have anti inflammatory effects,  exactly what prednisone is, oh how simple it would be if prednisone was the answer,  but we all know how much damage it does with continual use.
The red bull,  well, ive definitely found that ice cold, and swigged down as quick as you can works best. I understand about your wifes problem with sensitive teeth, but i'll tell ya what, a cluster attack makes sensitive teeth feel like a pat on the back !!!
good luck
colin

hi esheel! nice to meet you, i'm new. i can relate to everything you said.

blacklab has brilliant idea, get d3 test!! and get the printout with the numbers so you can look them up.

best wishes

Quick update.  She has been PF since Thursday morning before she had her first dose of Prednisone.  She is still at 60mg per day and hasn't started tapering.  I know it is not unlikely that these will start popping up again after she begins to taper.  I am just hoping and praying that somehow that won't happen.  We will see.  We have Imitrex and Red Bull close by just in case. 

Follow up appointment is Aug 11th.  MRI is this Friday.  Thanks for all the support and I'll continue to keep everyone updated.

wrote on Jul 19^th, 2014 at 4:12am:

I think you've got a golden opportunity here, to go in and get a vit d3 blood test !!!  that will tell you. My experience from prednisone is that as soon as you taper off, bam its back.  The vit d3 regime, effectively raises our d levels, the magnesium, fish oil have anti inflammatory effects,  exactly what prednisone is, oh how simple it would be if prednisone was the answer,  but we all know how much damage it does with continual use. The red bull,  well, ive definitely found that ice cold, and swigged down as quick as you can works best. I understand about your wifes problem with sensitive teeth, but i'll tell ya what, a cluster attack makes sensitive teeth feel like a pat on the back !!! good luck colin

Will the HA specialist run the D3 test if they don't see that as having anything to do with it?  (Also, if they aren't even admitting that these may be CH?)

She doesn't have a primary GP so I don't know if we can swing paying for a GP just to get a Vit D3 test.  Are there accurate D3 tests that can be done at home?

You can buy a D3 testing kit on line. Google it. Not sure how much they cost beacause I'm in the UK but I believe about 25 - 30 dollars.

If the D3 works, it won't make any difference to the diagnosis. I had to wait months before I got my neuro appointment, and I was completely out of cycle by then. Thats the nature of this thing. When it would be helpful to actually have an attack, right there in front of the doctor - it won't happen. When I told him about the D3 he sneered and said "it'll work if you think it will", which suggested that he thought my pain was all in my head - Well IT IS, but you know what I mean.

If you read through Batch's posts you will find a chart showing the levels you need to have. It's pink and green so easy to spot if you're scrolling through fast.

agree with what maz said,
You will find that most of them will say that d3 has nothing to do with it !      DEMAND a d3 test, the rest of the evidence is in batches writings !  as you've probably already digested, we tend to lead the doctors in the right direction !   getting a correct diagnosis is really important and having a good head ache specialist is also important.
but you will have the jump on them as far as the vit d3 regime,  my doctor, while not admitting anything, gives a sort of guttle grunt, everytime I go in for a blood test, she see's the results that the regime is giving me, but just cant quite bring herself to say its attributed to the vitamins !
Im cool with that, I'm now on no drugs ! just the vit d3 regime,  I'm not totally pain free, but 85 % better if I had to throw a dart at it.
starting the regime even before seeing the doctor will have no adverse effect, Its good for you, its all natural and you might find it actually starts to help you before getting test results back...........goodluck
col

Today is the first day of the tapering. She is still pf. (Knock in wood) Praying that somehow these don't start right back up.

Hey Mj, you say she is tapering off the pred but is she starting with a preventative such as verapamil or lithium?

Mjedwards409 wrote on Jul 22^nd, 2014 at 9:40am:

Today is the first day of the tapering. She is still pf. (Knock in wood) Praying that somehow these don't start right back up.

With her tapering off, with no other preventive in play, it is highly likely that the headaches will return again, especially if they are CH. Often it can seem as if they return with a vengence, so be prepared for this.

And be very careful about doctors wanting to put her onto steroids repeatedly as whilst for occaisional short term use they are fine, it does not take long for them to have serious impacts especially to joints (Google will give you lots of details).

But I'm hoping for both of you that they do not return. If they don't, do still follow up on what is causing this as you need to find out as it could just return later.

hi! so glad to hear she got a PF break! I hope they don't come back. if they do, like Mike says, don't let them keep giving her steroids - this is a once in a blue moon thing for when it gets really really really bad. to break a bad cycle. not a way to 'treat' the headaches, steroids cause a lot of other problems.

a naturopath would do a d3. and it is cool that you can get a test online now, i haven't ordered one that way before, but that sounds promising.

good luck!

Thanks guys. 

BobG - No, she is not continuing with Verapamil or anything else.  They haven't diagnosed her with CH. (But as everyone knows, Neuros are generally slow to admit it's possible for a woman to have CH)

Mike and Ice - Thanks for the tip on pred.  We are prepared that they might start right up again and we will act quickly to call the HA specialist back and demand action if/when that happens.  We are still praying that won't be the case.

I have a quick question though.  You guys talk about "shadows" a lot.  I get the basic point of shadows.  My wife has had a tension-like headache this evening.  It is on all sides of her head, and feels very much like a traditional headache.  (Which she has always gotten multiple times per week)  Is this considered a "shadow" or is this most likely just a headache?  Thanks!

Mjedwards409 wrote on Jul 22^nd, 2014 at 9:07pm:

I have a quick question though.  You guys talk about "shadows" a lot.  I get the basic point of shadows.  My wife has had a tension-like headache this evening.  It is on all sides of her head, and feels very much like a traditional headache.  (Which she has always gotten multiple times per week)  Is this considered a "shadow" or is this most likely just a headache?  Thanks!

It could just be a normal tension headache. Having one headache type doesn't preclude you from getting other types too, with CH and migraine being the more common combination.

The best we've figured out about shadows is that they are just low level CHs. Treating them like a CH, e.g. using oxygen, energy drinks, etc. seems to work quite well.

If it is indeed CH then she will unfortunately learn the difference between that and any other type of HA.
The slightest little twitch between my right eye and right temple has me grabbing the imitrex .
A CH ramps up fairly quickly, whereas a shadow just lingers.

Yesterday was 40mg Pred instead of 60mg. Pf besides the tension headache. I know it's still early but fingers crossed. Today is 6 days pf.

6 days PF!!!

:) :) :)

yay!

sorry about the tension headaches - it does get confusing, i can relate to esheel.

thanks Mike for the tip to treat the shadow with o2.

to clarify: my experience with shadows almost always culminates in actual CH, but it is interesting to consider these could be two separate events. Some days more time is spent in shadows than CH, and vice versa.

shadows

was it an imp skittering
in the corner of my eye
or a curtain slowly fading my periphery
heavy, heavy, want to rest
but the pressure warns me
don't dare fall asleep
stuffing gauze behind my eye
pack it full and soak it in oil
the imp has a match
in the corner waiting
i keep looking over my shoulder
i try to run away from myself
but i am still here
i don't pray now,
that will come later even though i'm agnostic
for now the shadow taunts me
with fading vision
building pressure
just enough pain to start worrying
until my nose drips and i know the jig's up
i won't describe the rest in polite company

Thanks for the info on shadows guys.  She describes these as completely standard tension headaches, like she as always had.  It might be coming from the Prednisone taper.

Quick update.  (Knocking A LOT on wood right now)  She is still pain free.  Yesterday she only took 20mg Pred.  Today she has been completely off all day.  I know it's still in her system a bid.  I am praying so hard that she reamins PF, as she has been so far.  I know the next couple of days will be crucial.

Thanks so much and please keep her in your thoughts.  Going for the "just in case" MRI tomorrow morning just to eliminate any other possibilities.

I hope everyone is doing well!

The Patient"


A groan of tedium escapes me,
Startling the fearful.
Is this a test? It has to be,
Otherwise I can't go on.
Draining patience, drain vitality.
This paranoid, paralyzed vampire act's a little old.

But I'm still right here
Giving blood, keeping faith
And I'm still right here.

Wait it out,
Gonna wait it out,
Be patient (wait it out).

If there were no reward to (reap / heal),
(No / A) loving embrace to see me through
This tedious path I've chosen here,
I certainly would've walked away by now.
Gonna wait it out.

If there were no desire to heal
A damaged and broken man along
This tedious path I've chosen here
I certainly would've walked away by now.

And I still may ... [sigh] ... I still may.

Be patient.
I must keep reminding myself of this.

And if there were no rewards to heal,
  loving embrace to see me through
This tedious path I've chosen here,
I certainly would've walked away by now.
And I still may.

Gonna wait it out. 
jmk

Glad your wife is currently PF :)


Quote:

The best we've figured out about shadows is that they are just low level CHs. Treating them like a CH, e.g. using oxygen, energy drinks, etc. seems to work quite well.

Yes, my husband is getting shadows almost every day and the O2 helps. I can tell that he's getting one because he starts to rub the right side of his forehead - the asymmetry is a give-away.

Hoping the test results rule out more serious conditions.

I'm a little bummed out this morning.  She has been completely prednisone free since Thursday.  I truly though either we stopped this cycle or these weren't CH at all to begin with.  Last night at about 1:45AM, she woke up with another one.  It wasn't as bad as the past ones.  She immediately took an Imitrex tablet and downed a Red Bull.  She was back sleeping within 20 minutes. (Despite the Red Bull)

We are going out to get her the D3 regimen ingredients today.  We do not have the time to get the D3 test first, as she starts a new job this coming week.  Hopefully the Imitrex and Red Bull will minimize things while all of this gets into her system. 

I don't doubt that IF the D3 works, the doctors will turn up their noses and say that the headaches must of gone away on their own.  That being said, these particular doctors seemed fairly firm on not diagnosing CH because she is a woman, so I guess it doesn't really matter.

Yes, the doctors will say it's the end of the cycle and not the D3 thats working. In fairness, it may well be that, as cycles can stop as suddenly as they start, or sometimes they just peter out slowly. I've had it both ways.

However, the D3 takes a while to build up to the correct levels in your system which is why the blood test is important - to check where you're at. So it's important to keep taking the D3 even after all sign of CH have gone. That way it will continue to build up in the system and hopefully the next cycle will be a non event.

I can't believe there are still doctors who won't diagnose CH in women. My own neuro is one of them. He KNOWS I have CH, but will not back down now. His official diagnosis is TAC. When I googled it, it's a group of 3 headache conditions of which CH is one. My symptoms don't fit the other 2. But it's not CH because I'm a woman. I told him there were hundreds of women on this site alone, and he denied they had it too. So every other doctor in the world who has diagnosed this in women, is wrong. You can't win !
So basically I have asked my GP for CH meds and she gave them to me, so when I see the neuro I just nod politely and then go home and do my own thing.

Is there any chance your wife can see a different doctor.
Maz.

hi mj,
         sorry to hear they came back after the cessation of prednisone. From my experience of prednisone, that's exactly what happened to me, they started to come back a few days after I stopped.
listen, go for it with the vit d regime.  make sure you get all the co-factors with it as well, the vit k ( m4&m7) is extremely important when taking large doses of vit d and all the others are have good anti inflammatory properties.
go hard on the d3, start with a 50,000 dose and a 20,000 dose straight away, then 20,000 per day and a top up 50,000 at the end of the week. Its very safe and there wont be a chance of intoxication, no matter what the doctor sais, chances are your wife is deficient, as we all have been before starting. It may make the ch attacks go all over the place for a while, but she could be one of the lucky ones that it quells the attacks straight away.
Its a preventative for life ! a healthy one at that, so get her to stay on it !  get your tests done as soon as you can, but don't wait to start the regime, get her taking it now.
try and get the same brands that batch has put up.
As far as the red bull goes, I was quite surprised that I could go back to sleep comparatively easily ! sometimes it will keep me awake for a while but generally I can slip back to sleep......   good luck
col

Thanks maz and BL.  She had another hit at about 4:00AM this morning.  She took the Imitrex tab and declined the Red Bull.  Thing lasted about an hour.  Right as she dozed off, our alarms went off to wake up.  She described it as being a 9 on the pain scale, but since she is new to these I think it was more like a 6 or 7 in yall's world.  She didn't cry or flail, just kind of moaned and rocked.

I went and bought her all of the regimen yesterday.  Went with the Magnesium Citrate over the Magnesium Oxide due to some of the things I read.  Got the exact same brands of everything and threw in the B50 complex.  She took the standard 10,000iu dose to start off.  (Per Batch's recommendation to make sure there were no ill effects, which there were not)  She will take 70,000iu this evening with dinner along with everything else.

I have a few questions that I will also post of Batch's D3 thread:

- She starts a new job this week as a teacher so she absolutely cannot afford a hit at work that fails to be aborted.  Do you think it's wise to get a refill of the pred taper while she gets the D3 and all into her system?  Obviously this is not a long term solution, but her first taper was only 7 days which is fairly short, so maybe a second short cycle would give her some temp relief while she D3 loaded?

- Batch's original D3 regimen called for 400mg Magnesium.  However, since we bought the Magnesium Citrate it comes in 250mg tablets.  Would the single 250mg Magnesium Cit. be enough considering it absorbs much better than Oxide?  She already eats a lot of fruits, leafy greans, and mixed nuts.

- Since it looks like these neuros may stick to their guns on the "women can't get CH" thing, is it worth just getting an O2 tank through other means than medical?  If so, can I just get the tank and then by the non-rebreather mask from the site. Are there any other "parts" we'd need?

Thanks very much again for the support.

Hi Mj,
Firstly, the pred taper: That's nasty stuff and shouldn't be used too often. As you've found out it only works while you are actually taking it and the CH will come back when you stop. Your wife needs a preventative like verapamil for long term use. This will take a couple of weeks to kick in, so the pred taper is usually  used to help you over that first couple of weeks. It seems strange to have been given the pred on it's own.

As for the O2, I know some folks use welders O2, which I assume (but don't know) has a regulator on it. You can get a non rebreather mask from here. There is a tab on the left os your screen entitled "CH.com store". But don't tell the O2 suppliers why you want it. You'll have to make up some story about welding.

Will your doctor give you a prescription for imitrex injections? If your wife gets a hit at work she could just excuse herself to the ladies room (as early into the attack as possible) and be back in the class room in 10 minutes. They are expensive so it's best to stockpile a few when she's not in cycle, and that helps to spread the cost when you need them. They really are brilliant. I never leave the house without them.

All of Batch's regimen can be bought very cheaply on line. Here in the UK we can only get them in tiny doses and would have to take bottles full every day, and at £6 - 7 a bottle no one could afford that. So I get mine from iherb.com in california. They supply all the large doses like 5000 iu of D3, and even with the shipping costs to the UK it's still miles cheaper than here. Personally, I would rather take 500 mg magnesium than 250, or you could cut one in half to make up 375 which is nearly there.

Now, there are some who will dissagree with this but it was reccommended to me by another poster and has worked so far. Take an imitrex pill at bed time and that may help to ward off the night time attacks. The instructions say it will not work as a preventative so you should not do this, but I do it and it works for me. Worth a try.

Rocking - yes, we all do that. It's called dancing with the devil.

Hope she gets a handle on it soon, and the new job goes well. Do try to get those injections. They are exactly what she needs at work.
Keep us posted.
Maz.

Hi Mjedwards,

Greetings from a fellow supporter. I haven't read your whole thread so my apologies if I have written something below that doesn't apply.

Maz is giving you good advice :)


Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:

She starts a new job this week as a teacher so she absolutely cannot afford a hit at work that fails to be aborted.  Do you think it's wise to get a refill of the pred taper while she gets the D3 and all into her system?  Obviously this is not a long term solution, but her first taper was only 7 days which is fairly short, so maybe a second short cycle would give her some temp relief while she D3 loaded?

That is a tricky situation. I can't advise you on the meds, but I can tell you that my husband - who has been having CH for about 4 years - has had the pattern of attacks in the evening and at night. Daytime attacks have been very very rare.


Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:

2) Batch's original D3 regimen called for 400mg Magnesium.  However, since we bought the Magnesium Citrate it comes in 250mg tablets.  Would the single 250mg Magnesium Cit. be enough considering it absorbs much better than Oxide?

If she is taking a multi, check how much magnesium is in it. I would do the full 400.


Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:

Since it looks like these neuros may stick to their guns on the "women can't get CH" thing

Sometimes you have to educate your doctor. Print and highlight:
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Quote:

The male to female ratio varies between 2.5:1 and 3.5:1.4 14 Patients typically start to develop the attacks in their third to fifth decade, although patients as young as 4 years and as old as 96 years can be affected.

Emphasize the CH-specific symptoms that she has: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Make sure they have ruled out other underlying causes - if they don't think it's CH, what are they saying it is? Other causes of pain like that can be even more serious :( .


Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:

is it worth just getting an O2 tank through other means than medical?

I walked into our family doctor's office determined to get an O2 prescription and I was successful. It's important to speak in a language they understand. Your wife needs to present the problem: "I will lose my job if I can't get the pain under control. I can't sleep and I'm terrified of the attacks". And then present the solution: "could we at least do a trial period to see if the O2 helps?". The indirect message that you don't say is: "it's your fault if I lose my job due to lack of appropriate diagnosis/treatment". Speak for your wife if she can't advocate for herself this way.

Having seen how O2 helps my husband, with no side effects, I would get welder's O2 if I had to. Especially with the nighttime attacks, it gets him some sleep (but the attacks still exhaust him). If you're serious about doing this first read this whole page carefully:
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and here is how one person did the welding O2 thing:
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Good luck. I'm posting in a thread in the Supporter's Corner part of the forum - it can be helpful to take some time to make it "all about me". I know what you're going through - dh can barely cope right now and I've been desperately running around trying to organize things for him. We are constantly cancelling things and it's been hard on both of us.

Oh, and read the four parts of the Supporters Survival Tips here:
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Very well said by an experienced supporter.

Can you have her describe her pain and where exactly it is located.

For instance for me my cluster side is my right side. My pain starts with a burning in my nostril and then moves up to my temple as the pain increases. Is her pain excruciating, exquisite, worst pain she has ever experienced? Does she have a stuffy nose during the attack? These are all classic signs of CH.

From reading I agree O2 with a good non rebreather mask and regulator that goes at least up to 15lpm. Also verapamil. I would advise starting at 240-360mg of Verapamil and increase as necessary. Verapamil has been a huge preventative for me. I have tried it all and I still get CH breakthrough, but I have been on Verapamil for many years and side effects are minimal in my case.

Prednisone works. I use it for emergencies. I travel with it in case I get hit while away from 02. It sounds like her taper was very quick, I would go with a longer taper if possible.

We all do truly feel for her, but we know so much more now than we did 25 years ago when I got hit for the first time. But still at first it is damn scary.

Another alternative I don't think I saw mentioned was clusterbusting. Just google it.

--mike--

Sorry to hear they came back.
Maz is right.
Atlanta is big.
Find another neuro.
I would beg my gp for o2 or injections or perhaps nasal spray if they are truly hesitant.
I've been using zomig with some relief.
Not total relief mind you , but certainly faster than a tablet .
They get me thru the daytime hits.
I save my injections for the nasty ones.
Good luck.be strong for her,it's a tough fight.

Thanks for the help everyone.  On a work conference call so I doon't have a lot of time to post details.  (Will later today)  Basically the doc called in a script for Topamax.  Researching the sides now.  I know it's normally a migraine med but I've read there have been some good results with CH as well.

She has a follow up appt with the new Neuro (same office, but lead HA specialist) in 8 days.  Started Batch's D3 regimen but too early to tell.  Will follow up this afternoon with full details.  Thanks!

Mjedwards409 wrote on Jul 29^th, 2014 at 7:41am:

She has a follow up appt with the new Neuro (same office, but lead HA specialist) in 8 days.

Glad to hear that! Seems like getting a formal diagnosis of CH is the first step here.

Mjedwards409 wrote on Jul 29^th, 2014 at 7:41am:

Basically the doc called in a script for Topamax.  Researching the sides now.

From a CH study where they used Topimarate:

Quote:

The adverse effects included: paresthesia (84%), slow speech (54%), and dizziness (46%), but were tolerated by most patients.

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Here's an old thread talking about Topomax side effects in CH sufferers:
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I would not want to try a drug like this while starting a new teaching job  :-/

Thanks everyone for the kind words and support.  She did some research on Topamax.  Like feisty said, the side effects for someone starting a teaching job are far from ideal. (Especially since daytime HA's have been extremely rare)  Most notably the depression and possible suicidal tendencies were unsettling.

That being said...(knock on wood) last night marked two PF nights in a row.  When we did the math, we realized that this is the first time (besides when she was on prednisone taper) that she has gone two straight nights without one of these HA's since July 6th and 7th.

Way too early to tell, but yesterday was day 3 on the D3 regimen.  Maybe since she was only having a HA every other day it will be effective in a shorter amount of time.  Either way, it would be great for her to be able to do this effectively and not go on Topamax or another Pred taper.  Will keep everyone updated!

Hopefully, her cycle is coming to it's natural end. If so, now is the time to get stocked up on all necessary things so you are ready for the next one. If she doesn't want the topomax maybe she could try a long term preventative like verapamil, and also get a few imitrex injections for if a sneaky one gets through, then she should be well armed.

All the meds I have ever tried (many that were not even the right ones for this condition) have had gruesome side effects for a very few people. Depression and suicidal feelings have only ever been brought about by the pain for me. Not the meds. Such side effects are really very rare.

Personally I don't use any preventative (except D3). I prefer to just use abortives when and if I need them (O2 at home and injections when I'm out) but it's easier for me as I no longer work.

Hope she's getting the break she needs. But don't get complacent. Always be prepared.
Maz.

I hope your wife's cycle is over!

Personally I would focus on getting her oxygen so that she is prepared to abort the attacks at night - that will help her get more sleep so that she can function during the day. For daytime, I would suggest that she have a plan in place for what she would do if she did have an attack. Her employer can't fault her for having an unforeseen medical situation arise - they would simply have to deal with it.

It would be worthwhile to figure out if very cold Red Bull helps her to abort attacks - that's something she could take with her. Also, my husband finds that 500 mg acetaminophen + 400 mg ibuprofen helps with shadow headaches, but not the full blown cluster attacks.

Good luck.

so sorry the pain came back, hope it stops. i think pred causes lowered immune system ( side effect of steroids ) which near children could mean easily catching a cold or flu fyi.

imho oxygen is priority 1. i went through a lot of docs & neuros before i got oxygen.

topomax requires a taper fyi, and has serious contraindications with other meds, so be careful.