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The Clusters have Returned :( (Read 3610 times)

KGuite

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Thomaston, Maine
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The Clusters have Returned :(
Oct 3^rd, 2011 at 12:15pm

Hey everyone,
My name is Kelley and I am new to this site. I thought being able to discuss the hell of Cluster headaches with others who also experience them might be helpful. I suffered from Cluster headaches (diagnosed by my doctor officially 2 years ago) for about 6 months. I had a headache at least once a day for 4 of the 6 months, then they became sporadic and suddenly stopped. No one was ever able to figure out a trigger or cause for them. Now, after a year of being cluster free, they have returned. I have had a headache every day for the past 2 weeks. They have been increasing in severity and length. My husband has been supportive, but it is so hard to explain that one minute I am fine, but within 5 minutes I feel like my brain my explode out of my head. He is always asking what changed or if I did something differently. I don't think he understands that they just appear and there literally is nothing that I can do until it subsides. I take the generic brand of Fioricet to help, which takes the edge off, and try to force myself to relax enough for the headache to dissipate. It's quite hard to relax that much when your whole body wants to be thrashing about because it hurts so bad.

Has anyone found anything more natural than pumping yourself full of heavy duty meds or eating Excedrin 3 times a day to beat the headaches? Someone had suggested pear juice, but that did not work for me. I can't explain how much I do not want to re-enter this hell.

~KGuite

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DennisM1045

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Re: The Clusters have Returned :(
Reply #1 - Oct 3^rd, 2011 at 1:02pm

Hi K and welcome! You certainly will get a lot out of talking to other Clusterheads.

My first reaction after reading your post is to suggest you find another Dr. Foricet is not, in my experience anyway, a mainline CH drug. There are much more effective ways of fighting off attacks. I'll bet you are getting more benefit from the caffeine than anything else. Knock back an energy drink and see if it helps as much.

I use Oxygen to abort but not much anymore since my preventative regime has been so effective. I use a combination of low dose Verapamil (120mg/day), Testosterone replacement therapy and a modified version of Batch's herbal remedy (check the medications section for that one).

I would strongly suggest you look for a Dr with experience helping patients fight these things. It will make a world of difference in your ability to live your live.

Spouses have a hard time watching us suffer and need just as much support. You should encourage him to join here and read along as you do. It will give you both a shared understanding of what is happening and how best to fight it. Empowerment is the word that best describes what I'm talking about. It changes your perspective from one of victim to that of a combatant.

Everyone's road through this is different. We all find what works for us just a bit unique than what works for everyone else. That is what makes finding your own magic formula so difficult. It'll take some time but the results are well worth the search.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Cluster schmuck

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Re: The Clusters have Returned :(
Reply #2 - Oct 3^rd, 2011 at 1:38pm

HI. Kelley. I am also new to this sight. I can't even explain how much it is helping me get through this monster attack that I am going through right now. I have always used Prednisone in the past and it stopped working. I can't afford doctors right now but in the past I have been put through tons of test to find out that it is cluster headaches and there is no cure. The support here is AMAZING!! I also have been going through my attacks with no abortive or pain relieving help. IT HAS BEEN HORRIBLE. I keep hoping the cycle will end. When I go to the doctor I have always had to tell them what to prescribe me since they didn't seem to know anything about my condition. If I had been on this site earlier I would have been better prepared when I went last time. There is a ton of information here and a lot of people that want to help. I feel for you and know what you going through...GOOD LUCK...

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Bob Johnson

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Re: The Clusters have Returned :(
Reply #3 - Oct 3^rd, 2011 at 3:21pm

Since you will, I trust, be with us for some time please:

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
====================================
It's critical that you work with a doc who has knowledge and skill in working with headaches--a group of disorders which are far more complex than is generally recognized. Your treatment now is quite out of keeping with good current practice for Cluster, so.....

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3. 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.

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

; On-line screen to find a physician.

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

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.

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

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.
=====
Some very basic learning is needful. Start by exploring the buttons, left, starting with the OUCH site. Then,

Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

(Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
===

A couple of 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

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

Search under "cluster headache"
====
Print the PDF file, below. It's a good tool to discuss treatment options with any doc you see--as well as informing you about the most current meds to treat Cluster.
=====
There is much more basic material which we can share but this will give you some starting point.

I would encourage you to avoid trying any treatments on your own until you have established a relationship with a good headache doctor.

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

(96 KB | 16 )

Bob Johnson

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Guiseppi

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Re: The Clusters have Returned :(
Reply #4 - Oct 3^rd, 2011 at 7:15pm

I was given firoinal for my CH...in 1981. We've come a long way since then, from what you have posted about treatments, your doc is in the dark ages.

Take Bob's advice and locate a specialist, we have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

There is a post in the meds section, "123 PAIN FREE DAYS AND I THINK I KNOW WHY" read this post, it’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time:

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Edited to fix my goofs!!!

« Last Edit: Oct 3^rd, 2011 at 11:28pm by Guiseppi »

"Somebody had to say it" is usually a piss poor excuse to be mean.

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jon019

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Re: The Clusters have Returned :(
Reply #5 - Oct 3^rd, 2011 at 8:29pm

Hiya Kelley...welcome aboard...it's a good boat...no passengers, we're all crew...grab an oar and row..it'll get us all there faster

You've already gotten golden advice...I just want to affirm.....

Guiseppi wrote on Oct 3^rd, 2011 at 7:15pm:

I was given firoinal for my CH...in 1981. We've come a long way since then, from what you have posted about treatments, your doc is in the dark ages.

Absolutely an ancient treatment....docs who prescribe this are relying on an OLD reference book. It was old in 1985 when I tried. It makes a wide awake clusterhead...in extreme pain.... a sleepy clusterhead...in extreme pain.

Take Bob's advice and locate a specialist, we have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

In my case, it took seeing 8 physicians before I found a headache specialist neurologist....and a mostly successful treatment regimen. It's a hard slog...once you've been here long enough you will find YOU know more about this condition than most physicians. They just don't get the training. It takes a lot of training on your part to educate them....you've got better things to do...find one, advocate for yourself...noone else will.

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

For me...480-960 mg/dy of verapamil .....wonderous...

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

Methylprednisolone stopped one cycle dead...but only once...definitely worth a try though...short taper only...

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

O2...O2...O2!!!!! read that link...don't give up easily....it is so benign...and SO good.

Pills?..... fergetaboutit. Zomig nasal spray is my "rescue" med when nothing else works.

There is a post in the meds section, "123 PAIN FREE DAYS AND I THINK I KNOW WHY" read this post, it’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time:

Working for LOTS of folks...you got NOTHING to lose!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Just make sure it has 1000 mg taurine and at least 100 mg caffeine. Buy by price...not brand name....

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterheadaches.com

Joe meant clusterbusters.com

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

YUP!

Joe

Best,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: The Clusters have Returned :( Reply #6 - Oct 3^rd, 2011 at 11:28pm Thanks Jon...must proof my posts better!!! Joe
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wimsey1

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Re: The Clusters have Returned :(
Reply #7 - Oct 4^th, 2011 at 8:25am

Hey Kelley, and welcome. Please do read all of the advice you've been given, and take it to heart. You will find our collective wisdom has come through years of hard labor and much suffering, only to find there can be light at the end of this dreadful tunnel. One thing to add: stop chewing asprin. Like you, I resorted to this many, many years ago when I knew nothing about CHs except it HURT! Chewing asprin seemed to help abort the attack, but it also gave me an ulcer for which I needed treatment. O2 and imitrex are the best abortives. Oh yeah, energy drinks seem to help, too. Blessings and let us know what your plan of action is when you decide. lance

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katcha93

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Re: The Clusters have Returned :(
Reply #8 - Oct 4^th, 2011 at 10:04am

I too am new to this site and am so thankful for all the helpful information. I had never heard of the energy drink thing and am anxious to try something new. I have a frustrated doctor that has suggested many times verapamil and steroids. I think I am just afraid of side effects or prolonging an attack with prednisone. I am sure there are answers to this throughout the site but to those who get episodic clusters...Do those come at the same time every year? Mine tend to be in October or December. That is only since I have lived in Massachusetts. When I lived in Boise Id, they came in March. Does anyone else see climate change as a determining factor? I also wonder about the nasal sprays. has anyone had any good results from capsacian nasal spray or perhaps botox injections?
Thanks so much!

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Guiseppi

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Re: The Clusters have Returned :(
Reply #9 - Oct 4^th, 2011 at 6:56pm

33 year episodic, in my 20's and 30's, I'd get 2 cycles a year, spring and fall, 8-12 weeks long. As I've gotten older they have become less predictable. Longer remissions, almost 2 years, longer cycles, last one was 8 months. My CH is not responsive to weather changes, many on this board have posted that barometrc changes aggravate their cycles.

The capsacian nasal sprays have not helped anyone that I know of. The imitrex nasal sprays are popular with many.

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

Read this link. Oxygen should be your first line abortive. I kill my attacks in about 6-8 minutes just by breathing pure 02. Read the link as it must be used correctly to be effective.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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B.Baer CH.com Veteran Offline I Love CH.com! Posts: 154 Northeast Pennsylvania Gender:	Re: The Clusters have Returned :( Reply #10 - Oct 4^th, 2011 at 10:23pm Welcome Kelley, Great advise around here... +1 on the Oxygen mentioned by Guiseppi.... Fiorinal... Man Joe, me too, way to date yourself.... ... Thankfully those days are long gone my friend... Kelley, read... read... read... ask questions... repeat. All the best, Baer
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: The Clusters have Returned :( Reply #11 - Oct 4^th, 2011 at 11:10pm Fiorinal... Man Joe, me too, way to date yourself.... ... Thankfully those days are long gone my friend... Sadly painful memories of firoinal, cafergot, and never ending pain....... Joe
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B.Baer

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Re: The Clusters have Returned :(
Reply #12 - Oct 4^th, 2011 at 11:42pm

Joe,

We've come a long way my friend....

We took that cocktail (drank the Kool-Aid as it were) with a smile on our face , expectations in our hearts... and an ongoing Pain in our heads..... Wink

Over and over and over again.... Should have took stock in the stuff. Cheesy

They, were doin' the best they could do under the circumstance, and with limited experience but high expectations... Seems such a long time ago....

Kelley, we digress.... as you can see, some of the members have been around awhile... understatement, and have suffered due to the limited knowledge available within the medical communuity, this forum HAS helped to change all that. Glad you found us..... Great group of folks around here. Relax and sit a spell.

Baer

« Last Edit: Oct 5^th, 2011 at 5:36pm by B.Baer »

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wimsey1

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Re: The Clusters have Returned :(
Reply #13 - Oct 5^th, 2011 at 8:10am

Welcome, katcha93, from another MA denizen. I haven't noticed any change since moving here from FL. I tend to do very badly in hot weather and better in cold weather. We have a lot of resources here, which doc are you seeing? As to side effects of meds that have proven helpful...well, there are side effects to everything, including doing nothing and letting the pain drive you into a very dark hole. Still, O2 is the best abortive and relatively safe. Imitrex (spray or injectable) is very fast and using the tip at the left can be reduced to much more cost efficient and effective 2mg doses. Lots here to read and note. Let us know more about yourself and what you've tried. Blessings. lance

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bhb

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Re: The Clusters have Returned :(
Reply #14 - Oct 5^th, 2011 at 10:42am

Hi Kelley - I'm also fairly new to this site but not to CH, 35 years with any number of Drs and no relief until visiting here.

O2 is a God send and Batch's 123 pain free I've been doing for about 4 weeks now and I'm completely pain free. I noticed just after 1 week a reduction in both pain level and number of hits per day as time went on it just kept getting better and better. I can't say enough about it except that I really wish I'd found this site years ago.

Really hope you can get some relief soon

No matter how great your triumphs or how tragic your defeats, one Billion Chinese couldn't care less.

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KGuite

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Thomaston, Maine
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Re: The Clusters have Returned :(
Reply #15 - Oct 11^th, 2011 at 6:12pm

To everyone who responded...thank you so much! I have been trying to keep myself busy hoping that the less time I spend sitting around the less I may get a headache. Wishfull thinking, right? I apologize I did not list my location. I live in Maine and have my entire life. =)

Today makes 3 weeks of having at least one headache every day. The past 4 days have shown an increase of 2-3 or more per day. Lovely. I have an appointment to see my DO on Thursday and hopefully discuss a few things with him. If none of this works, there is a neurology center which focuses on migraine/headache relief that I will be contacting if I don't get anywhere with my regular doc. We will see...with these things only time will tell...and patience is certainly a virtue!

Thank you so much again...your support is already making this easier...and now I have lots to read up on by Thursday so I can bring in some new ideas to the doc!

~Kelley

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debbi.T

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Re: The Clusters have Returned :(
Reply #16 - Oct 31^st, 2011 at 9:35am

hey kelly. i was diagnosed in april but didnt have any meds as my cycle lasted just 6 weeks. I got a lot of useful information from this site especially as i didnt want to put loads of different drugs into my body. I drank red bull when i felt a shadow and within 10 mins the shadow had gone. I also drank a glass of water every 30 mins and , altho i was going to the toilet a lot, my attacks were less frequent and shorter. the pain intesity was not as bad either. I hope you have found something that helps you deal with your pain.

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CaroleA

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Re: The Clusters have Returned :(
Reply #17 - Nov 2^nd, 2011 at 6:55am

Welcome Kelly, I am new to this board too and have found a wealth of information and support. I have just started taking verapamil (on my 3rd week now) at 240mg/day and for the most part they have improved. Have gone from every night for hours, to just a twinge and 2 pain free nights in a row. I have also started taking (1 week now) 9mg of melatonin 1/2 an hour before going to bed and a big glass of water. Not wanting to try the energy drinks (side effects), I keep a large double espresso capuccino in the fridge and start to drink that at the first sign of a twinge. This combination has been very effective and in 5 days the twinge has only progressed to a full-blown CH once!

Good luck and keep us posted.

Carole

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BreMac CH.com Newbie Offline I Love CH.com! Posts: 7 Prince George, B.C. Gender:	Re: The Clusters have Returned :( Reply #18 - Nov 2^nd, 2011 at 10:15am Welcome Kelley, sry to hear the Beast found u again but glad u found us. Just wanted to say hello and to "Read, read, read there is a wealth of info here all of it is good its just a matter of finding out what works for u. Good luck and keep in touch
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