I have recently been diagnosed with migraines and possibly ch. I really believe I have ch and the neuro says that's the least of my problems. I am looking for any advice as a new sufferer to this terrible ordeal. I am a 37 yr. of mother of three in NYC. I am also a high school teacher and I am not used to debilitating pain as I am very active. I am appealing to your experiences as I see most of you might understand what I am going through.
The pains in my head began two months ago and have not stopped. The mri was "normal" with the exception of a "spot" and the doctor has me on topamax at night 25 mg soon to be 50 mg and neurontin twice a day. I have pain all over my head but it has a "home." I have ch symptoms such as the leaky eye, eye pain and most of the pain is on the right side of my head, where the "home" is and in my neck. I also have these warm sensations. The pain is varied, of different magnitude and does show up in in different places. The neurontin is doing nothing (I think it's making it worse) but the topamax seems to help except that it makes me sleepy. I do also have feelings of cloudiness and dripping / leaking withing my head. I know its sounds strange and sometimes I think I am crazy because nothing like this has ever happened to me. The worst was a few weeks ago right before my menstruation, which is apparently not a symptom of ch. Can anyone help me?

Delish-
Things are tough for you right now, and I'm so sorry for that, BUT, yes, there is help, and it comes in the form of the greatest support group you'll ever find.
Let's clarify a few things first though. You say you've been in constant pain for 2 months? Where , specifically, do you experience the worst pain? Have you taken the cluster quiz? Over on the right  <<<<<<<<<<<,highlighted in yellow 4th from the top. I am not a Neuro, so I cannot diagnose you. The cluster quiz will help, and then we can really rock n roll.
For right now, I can offer you my sympathy for the pain you are in, confirm that, in fact, around here Topomax is referred to as Dopeymax, and will make you feel like a bowl of oatmeal, minus the bowl. I can also suggest, if there is a 'ramping up into the point of severe pain, try an energy drink containing taurine(Rock Star, Red Bull)chug it fast, see if that helps.......or even some very strong coffee....and, when you can, start reading everything you can here.
ASK.any questions you may have, if you don't find an answer in reading, ask away. You will find a ton of experience in dealing with CH. Most of all remember, although it might feel like it at times, CH does NOT kill...you WILL come out of a hit, and feel normal again.
That's what I've got for right now. Check in with us, let us know how things are going, and let us know the results of the quiz...it'll jhelp, believe me!
Till then, I'll be thinking of you and wishing you PF
Cathi

Welcome Delish. Your thread title is truth - you are amongst friends. Others will come behind me with ideas for you, questions, etc. Meanwhile, consider reading the information about Oxygen - highlighted to the left. Most sufferers here find that properly used, it will abort the pain faster than any drugs, and without the side effects you mentioned.

Good luck and press on, you do not have to let CH control your life.

Christy

Awww crud! Super bummer and how annoying for you! You found the right board. I dont really have much advice except stay on the neurologists back so he doesnt just blow you off and say you are drug seeking or imagining stuff.

Sending you a big supportive hug and wishing you all the best. Sophia

As I sit here with my kids I am grateful for people like you who take the time to respond. I will look into all of the information sent my way.
Truly thanks.
Diana

We're really here, Diana, please take the quiz and report results. I will help us immensely!
Big hugs for you and the kids. Hang tight! Things are gonna get better!
Cathi

Before making any comments on your present treatment, can you tell us whether your doc is experienced in treating complex headche disorders? You don't want any neurologist who is treating from the latest journal article but someone with deep experience.

Finding a good doc in NYC should not be a problem....

==========

 
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]

Welcome Diana. Wishing you all the best. May PFD come your way soon :)

Iddy  

Hugs to you and welcome to the board.  [smiley=hug.gif]All of the above repeated..plus!!!...If you're not already doing so, start keeping a detailed headache diary. When they start, how fast they build, how high they build..(check out the KIP scale on the left, as good a barometer as any for the pain)...how long it stays at peak pain, how fast it leaves. The final diagnosis...especially one like yours which may very well be a combo diagnosis...will be in the details.

Check out the link Bob gave you for finding a headache doc. Critical for a disorder like ours. We do understand, hang in there.

Joe

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.  Call 1-800-643-5552; 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.

Welcome, but I"m sorry you had to find us due to the pain.  I was on the Topax and it helped a great deal for me when I was on it.  I was one of the few that had the side reaction with tremors so I had to stop...but it was effective while I was on it, it lowered my pain level a lot.  I didn't stop the pain completely, but it took a lot of it away.  I don't have much other advise, other than doing research yourself until you find what works.  As for your kids, if they need help adjusting look at the supporters portion it's helping my teens understand.  Even to the point that I freaked out one of my daughter's friends when she saw me rocking away last night and my kid just said it's okay it's mom's headache she'll be okay in a few minutes we just have to leave her alone  8-)

Welcome aboard but sorry it's because of such pain.

A lot of what I read sounds like clusters but some not. I'm hoping you can get around this horror. You'll find good information here from the others. In the meantime, you might try a technique that works for me. It's non-invasive and you can use it anytime:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Good luck and let us know how you are getting along.

Charlie      

Sorry, Just stay strong I 'am a newbie and this website has helped me alot, More than they know. I'am going on 5+ years but , Since this website I been  pain free for 4 days. Wow feels great read alot this website is full of Information. Hopefully you will find the right formula! Are your headaches mostly at night? hope you use this website as a friend and help during hard times!  Tamara

I am so sorry to hear of your pain and the hard time you are going through.  You came to the right place though.  The good people on this site have helped me through very hard times  It is like having a big family around you who know and understand what you are going through, and how you are feeling.

As for the menstration issue.  My CH is always worse during menstration.  so whoever told you that they are not related was WRONG!!!!

good luck, and we are all wishing you some much needed relief from your pain.

Love,
christine :-*

Delish...please check out and review all of Bob Johnson's links.


         This man is a plethora of info.


If you want someone to listen, vent to etc.   give me a call (530) 224-9514   I have no compunction about giving out my number here.  I've done it for years and never had a problem.

Hey Delish,

I have been what you have described.  Before I was diagnosed with clusters and we didn't have internet, I would start a cycle.  Not knowing what it was I would take some over the counter pain killer like tylenol or advil or the like.  This did not help the pain but did cause the "all over" rebound headache which made it seem like the headache was all the time.  It was actually two different headaches.  The cluster that attacked every two hours and the rebound headache from the pain killer.

The cluster is the part in the back of your neck and the "home" as you call it.  The rebound headache is the all over sore part.

Does this sound like what is going on with you?

Quote:

As for the menstration issue.  My CH is always worse during menstration.  so whoever told you that they are not related was WRONG!!!!

aaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhh
fluffy kittens, fluffy kittens, fluffy kittens   :'( :'( :'( :'(

phew, welcome to your new home, lots of love and understanding here from a great bunch of people.

mark (wishing you and everyone PF days)

Hi Delish,

I would agree with Cathi and Joe that your first move should be to take the cluster quiz and have a look at the kip scale on the panel to your left. These two items of information will give you a better understanding of the symptoms and levels of pain involved in CH's.

You say the pain is constant...Sometimes we suffer from what we call shadows.This is when we are accompanied by a constant pain which although not totally debilitating it can become soul destroying due to its constant nature.

Welcome to the board and please do check out all this new information and hopefully it is not CH's you suffer from. If it is CH's then we can definitely offer you some sound advice on treatments and be there for you whenever you need us.

Take care


Lefty...!