Hi everybody, I am a 32 year old sufferer.  I had my first attack at the age of 13, it took an eye doctor, six physicians, two neurologists, and a chiropractor to finally get a diagnosis.....not to mention head scans and YEARS of my life.  I was finally diagnosed at age 22. I have lived with the beast for a better part of my life.  I am in the middle of what I call " the cluster f@#k" , pardon my French that is just my name for it. I am three days in, everyday at 2 am I go insane, in between the attacks I sit in utter exhaustion and fear of tonight when I close my eyes. My question is how do you make your spouse understand what you are going through?

I also wondering about alternative therapy.  Genarally prednisone will help abort, but I worry about what it is doing to my body.

Hi Amber,
Welcome, You must pleased you finally got some answers,
their have been a few stories similar to your's here just lately.
On your ? concerning alternative therapy. Check out the D3
Regime on this site, also Melatonin bought over the counter
has a good record for getting you through the night without
that REM wake up call.
Hoppy.

Amber, I'm curious that you are not seeking some assistance for your Cluster, given the implication in your message that your not getting good relief.

Secondly, I'm sad that you have the need to "make" your husband understand vs. his sharing your journey with you.

You are responsible for the first, not for the second problem.

Honestly Bob, I live in a very rural area with very undiverse physicians, mostly family practice and although my doc is great and has helped immensely, I feel like my resources are limited.  Prednisone has worked for me, but I watched as my grandmother was repeatly treated with prednisone and went into acute renal failure and damaged her pancreas, resulting in disbetes. I also have an underlying autoimmune disorder, so I worry about using and reusing prednisone. I have also tried beta blockers.....I got hypotension. I am also allergic to imitex. So to respond to your accustion that I am not getting proactive in my treatment is a false statement....I just have limited resources. I came here for support and suggestions.

I suggest you listen to Bob.

          Potter

Hi Amber,
I thought this artical might help Hubby have more understanding what you and all us 1% centers
go through fighting this beast.

Professor Goadsby director of the UCSF headache
centre and one of the World's leading headache
experts and researchers has commented.

Cluster Headache is probaly the worst pain that humans
experience i know that's quite a strong remark to make
but if you ask a CH patient if they've had a worse experience,
they'll universally say they haven't. Woman with CH will tell
you that an attack is worst than giving birth. So you can
imagine that these people give birth without anesthetic
once, twice a day, for six, eight or ten weeks at a time
and then have a break. " It's just awful"  [smiley=hug.gif]

I was attempting to stay away from prednisone this round and was trying to get some feedback on alternative therapies before I jump right back to traditional methods.  Thank you for your support and answers.

Amber,

Please read the PM I just sent you.

Take care,

V/R, Batch

At Bob. You seem to have a lot of useful knowledge from the posts I have read. I am eager to share more about my case with you and see what suggestions you have.  Being from small town Iowa I have limited resources at my disposal, what would you suggest to someone in my situation? The Neuro I used to see as a teen is two hours away, any thoughts on how to talk with my regular doc about a different therapy? Thanks in advance.

G'day Amber, and welcome. Hoppy's contribution is very, very apt and if hubby would like to come here we'll certainly make him feel at home. I reckon our supporters are more important than our doctors, and often better informed.

Do you know much about oxygen for cluster headaches? A lot of work has gone into it in recent years and it's by far the abortive of choice for so many CHeads. If your doctor won't prescribe it, or won't prescribe it as it needs to be used, there are excellent means to the same ends that may even work out cheaper.

Another beaut trick, and don't laugh, is Red Bull. One of these guzzled down at the first hint of a hit can really help. Frozen peas are our friends too, putting the bag variously over the temple or the back of your neck, while others prefer a boiling hot shower. I do both, simultaneously, aiming to confuse the monster enough that it'll leave.

As mentioned by others, Batch's famous vitamin regimen is going great guns and everything is available over the counter. No doctors, nothing. You may also care to visit clusterbusters.com where an alternative therapy is getting rave reviews.

You're not alone, Amber, and we truly care about anyone fighting this beast.

Full steam ahead and damn the torpedoes,

Brian down under.

Thanks Brian! I am going to call the doc in the AM and see about oxygen. My grandfather was a CH Suffer and swore by it, but up until now I have no thought to it as abortives were working for me, but getting older and the other health issues I deal with now is the time to make some changes with my regimen. Not only to better my overall health, but because this episode is different from previous ones. Truly little beast. Well of to bed now, HopeFully a headache free night.

Hi Amber,      Another recent poster seems to be having a slight spousal support issue also so here's an idea, when the beast comes calling a 2:00 am have him/her get up with you just to share in the fun, have him ride it out with you all the way through, go back to bed till he comes again and repeat the  fun -- all the way till dawn.  He'll be as wasted as you and maybe get the message. He probably has to get up and go to work, might even use that as an excuse not to get up with you but I'm sure most clusterheads like me have to work too so that excuse don't fly.
   Please get on that oxygen, it really takes the fear away and it's effective for virtually everyone.
    I started the D3 regimen almost 2 weeks ago and it really seems to be helping for the worst cycle I've had in years. The last two days have been totally PF.
    Yeah, cycles do change, this one for me has been all over the board but every cycle seems to be a little different so ya gotta expect it.
        Good luck,   Sean
     PS,  If you're like me, you want to left alone but maybe you could make a exception just once

Hi Amber, I just joined the site too recently. 25 years clusterhead here. First episodic, then chronic, now pain free. In my case all the alternative methods and treatments did the trick. I am never going back to traditional/conventional treatments again since I feel they made me worse in the first place and chronic in the end. Luckily, with the help of internet, there is a wide variety of options.

I do not think doctor is a must. I had lousy doctors myself and choosing the self treatment was the best thing I have done in my life. Here in Scandinavia very few doctors think that vitamin D regimen is OK for an example (to be honest I have not heard about single one).

We have gathered a lot of information about all the alternative treatments in our Facebook group, if you use Facebook you can find the link in my profile or below this message.

Wishing you all the best.

G'day Tony,
I was just wondering, are you just saying doc's in Finland don't
believe the D3 Regime works, or is not safe, or both. [smiley=confused.gif]  Hoppy.

blacklab:
Sorry mate, you got me all wrong. I am all for vitamin D. It is safer, easier, cheaper than pretty much all the nasty pills we are prescribed. I totally would recommend it as 1st option for busting cluster headaches.

About doctors and medical field in general; they usually only medicate with conventional methods and do not tell the patients about alternatives or are not aware of them. When you have followed the CH front globally, you notice there is a lot of marvellously effective self-treatment going on in CH communities globally. It would not be this way if all these different approaches would be in medical field's arsenal. Very great example is Clusterbusters.

I am not saying to stay away from doctors, I am saying to have or to find a doctor who treats a patient with cluster headaches so that he/she gets safely better. Vitamin D regimen is very good "tester". Has your doctor heard of it? If not, is he/she ready to learn more? Any doctor who is ready to either receive information brought by a patient that he/she is unaware of or even better, search this information by themselves - then weight all the options with the patient not ruling anything out just because is not conventional is A OK in my books.

Hoppy:
I have talked to 1 GP and 2 neurologists about it, none thought it could work and all considered it dangerous. We have 150+ members in our FB group and seems to me vitamin regimen is not approved by doctors, based on what people share in our group. Mostly it is considered dangerous.

(What it in my opinion definitively is not, when done right and blood levels are monitored compared to prescriptives)

Yeh Tony, that's what i thought you meant. It's pretty well the
same here, they (Doc's) need to get their head out of the sand.
[smiley=deadhorse1.gif]

But it's a bit like floggin a.

Sometimes I wonder where do these different folks breed.

My opinions for everyone in here, based on my 25 years of experience. Whether one is episodic or chronic, breaking the cycle is usually a good idea. As for my personal experience, when chronic there was no success with anything. Been on over 50 prescriptive meds, been through operations, surgeries.

Just in my case, busting the cycle worked. Been PF ever since and plan on staying that way though it takes continuous effort.

Anyone can use what is personally best for them. Plus common sense.

I was on medication and under doctor's care and my attacks went worse, cycles longer etc.

Went under my own care with great guidance from fellow sufferers and through a miracle from chronic to pain free. Enough said ?

Not selling anyone anything, not recruiting, just sharing and passing on the information I have been given since it's my duty to do so now that I am saved - it's my Thank You and my obligation.

The principal stuff that made me worse; triptans (Imigran, Sumatriptan), cortisone (prednison etc. also IV), verpamil, bunch of epilepsy meds + lots on lots of others, all from pharmaceutical field.

O2 was naturally a life saver.

The alternative stuff I have found since leaving my killer path and what I recommend every clusterhead at least investigate further: vitamin D, liquorice root (with skull cap), melatonin, kudzu, RC seeds, psilocybin, maca and boswellia serrata.

Pharmaceuticals do not seem to target the cause. Alternatives do. Just my $0.02.

I think I have given my input on this one, nothing more to add really. Educate yourself, educate your doctor if needed, use your sense and monitor how your condition evolves - it should be getting better (as you can see for many it does). Godspeed.

:)

EDIT: Now my posts sound funny when START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Colin) deleled his, but I will leave mine, end of discussion.

I trust we all still agree it's imperative that a  genuine diagnosis be made by medical professionals.

Appreciate your inviting me into a conversation.

Starting point must be a solid diagnosis. An important study on this question found that 50% of folks diagnosed with Cluster did not have it, even as the immediate symptom picture lead to the Dx of Cl. Point being: self-diagnosis is not wise.

Compounding the problem: there are a number of serious disorders which mimic Cluster but which are not headache disorders. Sort thru this issue takes a doc with some skill/experience (Next is not to scare you but to give some idea of how complex making a Dx can be. Just scan his material to get a sense of the potentials we are dealing with.  [Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"]
===
So, given your restricted resources and need for a well grounded diasnosis before starting long term treatment, explore your options to find a headache specialist. At the least, one who will Dx you and then turn you back to your local docs for treatment and superivison of your treatment.
----
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.
==========
Assuming you must use a local doc. Many of us have beenin this situation and have been blessed with a doc who had an open ego, willing to accept medical information from us to use to our benefit.

So, just some basic medical material for you to print and prepae to give to a local doc who needs help treating you.

1. Print the PDF file, below.  (Have a more complex version of this article if needed. Just ask.)

2.
Three 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.
[re. headachedrugs: site of one of the best headache docs in the country; in the Chicago area. GIVE this site address to any doc ou see. Much of the material is aimed at doctors. The e-book noted <info at the site> is loaded with dense stuff for physicians. Direct any doc you see to this web site and this e-book.]
===================
You note having low BP which excludes using the best preventive med for Cluster we have, Verapamil. So, use the PDF file to explore options with a doc.

The overall approach to control Cluster is: Prednisone for a few DAYS to kill attacks WHILE AT THE SAME TIME stating to use a long acting preventive med to block/reduce future attacks; and an abortive to kill attacks which sneak thru.

Since you can't use Imitrex, print following and give to your doc. Some of us have had absolute relief with it.
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====

This is enough for you for one session! Stay in touch.

---

Fix the problem an she will understand,
go to your doctortell him to give you Staydol nasal spray an be done with the pain, or you can tryeverthing u have tried an then some, an still they will come and kill a little bit of you ever time !!!   Sure u can cry about how u cant take     this or that, but if u want instant relief, go today to ur doctor and dont ask , TELL him to give you  STAYDOL nasal spray, one shot in which ever side the pain is on,  2 mins later all pain gone !!!  U can thank mr. Live saver later, go get ur stuff today  !!!

wrote on Jun 12^th, 2013 at 1:10pm:

Fix the problem an she will understand, go to your doctortell him to give you Staydol nasal spray an be done with the pain, or you can tryeverthing u have tried an then some, an still they will come and kill a little bit of you ever time !!!   Sure u can cry about how u cant take     this or that, but if u want instant relief, go today to ur doctor and dont ask , TELL him to give you  STAYDOL nasal spray, one shot in which ever side the pain is on,  2 mins later all pain gone !!!  U can thank mr. Live saver later, go get ur stuff today  !!!

Horrible advice! >:(
Very dangerous and highly addictive! >:(
Alert moderator to this Spam! ;)

-Gregg in Las Vegas

wrote on Jun 12^th, 2013 at 1:10pm:

Fix the problem an she will understand, go to your doctortell him to give you Staydol nasal spray an be done with the pain, or you can tryeverthing u have tried an then some, an still they will come and kill a little bit of you ever time !!!   Sure u can cry about how u cant take     this or that, but if u want instant relief, go today to ur doctor and dont ask , TELL him to give you  STAYDOL nasal spray, one shot in which ever side the pain is on,  2 mins later all pain gone !!!  U can thank mr. Live saver later, go get ur stuff today  !!!

And more piss poor advice.

            Potter

Haha Alert MOD to this Spam, gees really people , why would anyone whos on here trying to get help with there pain and social problems cause by these headache, listen to this person called Gregg ??   Thought we were on here to help other people with the ways we have found to live with the headaches,  I just telling you , its been 5 years with no pain, and it takes 2 mins to work and if your scared of becoming addicted, then it seems like you might not really have suicide headaches, Gregg sure urs arnt Menstrual Pains !!
look people Staydol works 100% , just try it then write Gregg an tell him to get a life an stop giving his home remedies for something, that you need to stop ASAP !!!

wrote on Jun 12^th, 2013 at 2:20pm:

Haha Alert MOD to this Spam, gees really people , why would anyone whos on here trying to get help with there pain and social problems cause by these headache, listen to this person called Gregg ??   Thought we were on here to help other people with the ways we have found to live with the headaches,  I just telling you , its been 5 years with no pain, and it takes 2 mins to work and if your scared of becoming addicted, then it seems like you might not really have suicide headaches, Gregg sure urs arnt Menstrual Pains !! look people Staydol works 100% , just try it then write Gregg an tell him to get a life an stop giving his home remedies for something, that you need to stop ASAP !!!

it's stadol and Greg is respected here and you ain't. Begone.

                Potter

Over the past 10 years, I have educated neurologists and have suffered from CH's for over 33 years, and I have been on this board since 1999; so I conclude I have more credibility than most people, especially Newbies on CH's.  So there is your qualified source along with google. 

It is well documented that the treatment you are pushing in many sections on this website today is potentially deadly.

I personally find it criminal as if you are purposely aiding and abetting to fellow CH'ers demise.  Hopefully this poor advice will not be followed by anybody as we value our family members.

I'm done ;)
-Gregg in Las Vegas

And with that he's locked....

Way to go Gregg and Joe.  It was quite a show.

            Potter