Hi. My real name is Carole but everyone I know online knows me as Ella. I am a lefty(left-sided headaches). I've been dealing with these headaches since I was 17 years old and I will turn 49 on Sunday the 27Th, so about 32 years. I wasn't diagnosed with cluster headaches until recently, within the last ten years. All the Dr.s previously tried to tell me they were sinus infection or allergies. I also have SLE Lupus and fibromyalgia.
Something I haven't noticed in anything I've read yet as far as other pain during the headaches is that with mine my whole left side is involved. From my toes to the top of my head and out my left arm. I even feel that my hair hurts. I have horrific pain in my left sacroiliac area and buttocks.
I really don't know if mine are episodic or chronic. I have them often but not on a regular "clockwork" schedule until the really bad ones set in, usually every year and a half. You have to excuse me if I sound scatterbrained in this post but I am in the middle of a bad episode that's been going on since before Thanksgiving and having what yall have termed "shadows" at the moment. I always called it residual pain, leftovers from the last headache, pain from the pain.
I'm not under any real treatment for these because when the Dr.s wanted to do something I didn't have the money and now that I am on SSD and SSI they wont do anything. I do have my Imitrex tabs, which don't really help, just make me feel sick.
Back to the other pain I have...when I'm having my "light" headaches I can manipulate my sacroiliac joint and most times the headache will subside which leads me to believe that mine are caused by a pinched nerve in my pelvic region but to tell that to a Dr. I get the response " a pinched nerve in you hip wont make your head hurt, its not connected". Am I just dealing with idiots or am I a basket case? Well, all I know is that for 32 years I have dealt with this and have noticed the coincidence of the pain in my butt and the headaches. Something else I have noticed is that they usually appear within a week of me doing hard work especially lifting something heavy. But then I've started an episode just by sneezing, coughing or sitting/ lying on a hard surface. Had one start while a friend was giving me a neck rub.
My headaches feel like someone is drilling a hole in the top of my head just off-center to the left just in front of my ear and at the same time someone else is shoving an icepick up my nose or something inside my head trying to gnaw its way out and the pain radiates all over the left side of my head. The left side of my face will swell and my eye turns read and pours tears. My left nasal sinuses fill with so much pressure I can hear them pop and squeak releasing the pressure and the pain just from that is enough to blow your brains out. I have had nose bleeds also. My neck and shoulder don't get involved until a couple of weeks into an episode then I get the stinging, burning pain that makes my head draw down to my shoulder and I have a knot in the lower back of my neck that enlarges. I also mentioned above that I have pain all over my left side from toe to hair. I have trouble holding things in my left hand during these times. I drop things or they go flying as if someone knocked them out of my hand, I have even crushed things unintentionally. My attention span is nill during this time too and memory is a memory. Can we say CRS disease. I shake and my left limbs will jump.
I've gotten instant relief from "popping" my sacroiliac joint and ice packs on that area. I have taken a med called ergostat that is a little pill that I let dissolve in my mouth and it worked really fast but the Dr. that prescribed that said that it had been taken off the market. I also have taken another ergotamine med that was in suppository form that worked well but almost killed me the first time I used it. Just a 'lil dab 'il do. Now I take the Imitrex tabs and it takes forever to work or not at all. In the past few years I have been experiencing the pain in the right side of my head and I am so scared that I will have the pain on both sides of my head at once and I just can't handle that.
I have twins ,boy and girl, that are 27 years old now. They had to deal with watching me have these headaches. I still live with my daughter and her husband and I feel so sorry for her. She tries so hard to help me when I'm having these things but she knows that if she touches me it just intensifies the pain and I know she can hear me in the middle of the night crying and moaning from the pain and feeling so helpless to help me. And my rages have almost destroyed our relationship but thankfully we have unconditional love. Her husband is wonderful as well. He does anything for me that I ask of him. I know if it hadn't been for my kids I wouldn't be alive today but now that they are grown I don't know how much longer I can go with these headaches. Knowing that they will subside eventually gives me some solace, but knowing that they will return... I have tried suicide but I wont do that again, I made a promise to my daughter about that. But I wish quite often that a mac truck would hit me or hereditary stroke would go ahead and take me, it would be far less painful.

Hi Ella, first of all I think you need one of these  [smiley=hug.gif].  Going over 30 years without helpful medical intervention is just wrong and I'm so sorry you're suffering.   Since this site is a support site, and not a "medical community", none of us are qualified to "diagnose" what may be going on.  While some of what you describe is symptomatic of CH, you clearly have many other issues that are going on that may or may not be related to your episodes.  Even though you are on SSI & SSD you MUST see a headache specialist.  They can not refuse you because of that.  You may have to find one that takes your care plan, but you need a full neurological work up with all the issues you've described. 

I'm sure others will be along to guide you on the many abortives you can try in the meantime.  Please read up on the oxygen info.  That is the first line abortive of many, if not most, and something you can set up on your own until your doc appt.  Read, read, read all you can on this site.  While a headache specialist is a must, this site will give you the information you need to fight this fight.

Welcome to a home of support and information.  Please continue to post and ask questions.  The members here are wonderful and full of life changing information that they readily share.  Wishing you some pain free time very soon!

Thank you for your response to my post. [smiley=hug.gif] back at cha. I know I need to find a Headache Specialist, that is how I found this site. Figured I find one on my own online since these dork doctors wont do anything for me other than refill the Imitrex script. Maybe this episode will be over soon and I will go back to jsut having the light ones I can control and get some sleep.

The imitrex pills you say you're taking really don't work for CH.  CHer's who use imitrex use the injections or nasal spray.  As you've found out the pills are not effective and take too long to work.  For sleep, many use melatonin.  You can start at 9mg 1 hr before bedtime (you might want to check w/ your doc or pharmasist first if you are on any other meds for your other conditions).  This helps with night hits.  You may have to adjust your dosage for relief (my hubby went up to 15mg).  The OUCH website I thought had a list of headache specialists by state.  You may want to visit that website too as it is for CH support as well.  Good luck, and again, glad you are here.   :)

Edit to add link of OUCH member recommended docs

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

Hi Ellasilvia,

Being married to someone with severe fibromyalgia, etc., I know that's a terribly difficult thing to manage, and that you will experience all sorts of pains, etc. that those of us here without fibro won't be familiar with. :(

I doubt you have to fear having CH on BOTH sides at the same time, from what I've seen, that thankfully just doesn't happen.

Many of us have found dramatic relief from CH with the help of info and advice gained here. Most of us are just cuckoo  :) for the newer method of high flow 100% oxygen use as it can be so much more effective than the old way that is still prescribed by most doctors in their terrible ignorance (just as they will prescribe the ineffective pill form of imitrex instead of the effective injection or inhaler forms).

Checking out the info in the oxygen info tab over to the left there would be a great place to start.  :)

Carole, I have no idea how you will begin to sort out where the pain of one condition ends and another begins. I pray you find a good neuro/headache specialist who can address all of your symptoms. The best we can do is share what has worked for us with CHs, but with so many complications and possibly contravertible symptoms, I don't know which will work. Again, hopefully, a good dr can. Two ideas to pursue, though, would be O2 (see link at left) and check out clusterbusters. It's better than contemplating and early exit because it hurts so much. You have found sympathetic ears, here. Use this resource as much and as often as you need. We're here, and we understand (some) of what you're going through. God bless. lance

Hi Ella,

I'm so sorry to hear that you are hurting so much!  [smiley=hug.gif]

I also suffer from fibro, needless to say some of your symptoms sound very similar to mine!  Makes me wonder if the pain symptoms you are describing are associated with the fibromyalgia and not necessarily the CH.  As you know stress really aggrevates the pain and well, CH untreated can be very stressful  :-/ 

I also find that I get pain down one side during a cycle (I'm a righty but get pain/weakness down the left)  and memory ha!  Never had that quite sussed anyway. 

I have read of many people on here who get the sore hair thing - so not uncommon at all. 

I really do hope that you are able to get oxygen - if you must, demand it!!  It has been an absolute life saver for so many of us.  Reduces the amount of time suffering and eliminates so much of the fear - knowing that another attack will come.  Makes going to bed a lot easier!! 

Having some control over this condition will improve your state of mind no end - we really do understand where you're coming from - substantial relief is possible, so please don't give up.   You'll find that so many of us here started getting CH in our teens and went undiagnosed for a long, long time.  Knowing what it is, and how to deal with it will make all the difference in the world.

Stick around and ask questions, you're in safe hands  ;)

Wishin you all the best,

Kate

P.S.  In the meantime you might want to get some otc melatonin.  I've not used it myself, but I understand that many people are getting relief from the night time hits by using this.

While you have had Cluster for years you note that it has only been Dx recentlyl. So, I assume that you don't have much basic knowledge about CH. Throwing some basic stuff at you, accordingly.
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Explore the buttons, left, stating with the OUCH site.

PDF file below.

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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]
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Even with $ being a barrier, start your search for a good doc.

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. 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.

5. 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.

6. 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.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Your observation about posture triggering an attack are not nuts. We have had discussions on this topic several times and it's clear that posture can be triggers, varying from person to person on what does it. Also, elevated body heat (from working, exercise, etc.) can be a trigger for some.

AND avoid alcohol anytime you are in an active period! It's about the only universal trigger for us.
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One more idea: If you have a doc, general practice, whatever--ask him for a sample of this med and give it a try. You will know with 1-3 doses whether it works for you. On a per dose basis, it's affordable, and effective for many of us. As you noted, the Imitrex pill is not very useful because its mode of action is too slow for CH.

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

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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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