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

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.

I suggest you listen to Bob.

          Potter

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.

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.

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, 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.

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)

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 Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Colin) deleled his, but I will leave mine, end of discussion.

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"]
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  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.
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This is enough for you for one session! Stay in touch.

Quote:



Horrible advice!
Very dangerous and highly addictive!
Alert moderator to this Spam!

-Gregg in Las Vegas

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 !!!