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mom2klegirl

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A newbies story with a couple of questions (long)
Nov 20^th, 2009 at 12:35pm

Hi there! I'm new to this website and have a few questions.

I have had horrible headaches for literally as long as I can remember. I'm 21 now. I've been self-diagnosed (lol) but I am seeing a neurologist on Monday. I finally had a doctor decide that my headaches were beyond his expertise and referred me to a neuro rather than tell me that I have migraines like all the other doctors did. It was obvious I didn't have migraines, no conventional migraine meds ever worked and I was in soooo much pain. It just couldn't be a migraine. No one could get headaches this bad and live. Of course thanks to a family history of brain aneurysms I went through cat scans and worry but always to find nothing. I started researching migraines in hope of finding others who suffered so completely. Instead I found a small side article about cluster headaches. I instantly knew I figured out what was wrong with me.

Unfortunately I still don't fit the bill exactly. I have the excruciating pain that despite best efforts I can't just 'sleep off'. I have a schedule with them that I can almost pinpoint and track exactly and when I'm in the midst of a cycle I know exactly when I'm going to be hit with the horrible pain. Except it's different then what I've seen on here. Everyone talks about being woke up from sleep at night with horrible headaches. Mine always come in the day. Always. I'll have a shadow of a headache for hours in the morning and then at 2 pm in the afternoon I get horrible stabbing pain. Always on one side. Always to the point where I could jump off a building just feel the relief. I cry, I rock, I pray but nothing makes it go away. I try to make sure my 18 month old daughter is asleep so I can at least suffer with out worrying about her suffering as well. An hour goes by and the pain begins to lessen enough that I can breathe again. Another hour and I'll be alright. I get up, make dinner and await the next day when I'll either be caught again by a headache or I'll finally be free from them for a few months. I do the dance every day for 2ish weeks and then I'm better for two-three months before they come by and the dance starts again.

I never really tracked my headaches until I stumbled upon that article and when I realized they came at the same time every day I thought I finally knew what was wrong so I could start to find a treatment. But was I wrong? everyone else gets them at night, does that mean I've still not found what it is I suffer from? Please someone help me!

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« Last Edit: Nov 20^th, 2009 at 12:37pm by mom2klegirl »

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Jeannie

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Re: A newbies story with a couple of questions (long)
Reply #1 - Nov 20^th, 2009 at 1:14pm

Hi.

Not everyone who has CH gets them at night. I have had them for 29 years and never got one at night till about four years ago. There really is no "always" with CH. He's a tricky beast.

I'm glad you found us, though sorry for the reason. Have you take the Cluster quiz to the left of your screen? It might help you at your visit with the Neuro. Welcome.

PF wishes,

Jeannie

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« Last Edit: Nov 20^th, 2009 at 1:14pm by Jeannie »

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Martin

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Re: A newbies story with a couple of questions (long)
Reply #2 - Nov 20^th, 2009 at 1:14pm

My clusters are the same way. I've never in my life been woken up with a hit, and I hear other people never have as well. I'm only 23, however, and I know from this site that clusters are always changing and no two people are truly alike.

There's a 'cluster quiz' on this sidebar on the left, and it gives you some sort of stats on sufferers. I seem to remember around 34% have not had the waking up in the night hits.

The one sided pain, and timing of the attacks sound exactly like clusters. Read up on this site, print off some of the info and leave it with your neuro. There is easy releif available, but average time to get proper diagnosis is 6 years! If you've found this site, you're well on your way already. But, please take note, most CH sufferers have had to advocate, and educate their doctors to get proper treatment. Many go through several doctors, like you, before seeing one who understands our unique condition.

READ, READ, READ. and of course, ask questions.

GOOD LUCK,
there are some 'home remedies' to help ease the pain before proper preventative medications and abortive therapies are prescribed to you.

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Bob Johnson

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Re: A newbies story with a couple of questions (long)
Reply #3 - Nov 20^th, 2009 at 1:14pm

Probably the most misleading description about CH is the notion of fixed cycles/times--or some high level of regularity. Many of us have attacks in the day; not a night time disorder only. Some on regular cycles, other folks can't predict time/duration/even location of the pain. This variation makes diagnosis difficult and it's why we always push to work with a headache specialist vs. general neurologist. There are dozens of headache types and it really helps to see someone who spends much time just in this area.

If you have not done so, take the cluster quiz, see traits--buttons on the left.

This article will give a good introduction even if the medical terminology is a problem at points. Then the lists of meds should be the kind of talk you hear from the neurologist when you see him; current thinking on treatment.

Get back after our visit and let's hear what happened!
=======

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

or

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

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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

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« Last Edit: Nov 20^th, 2009 at 1:17pm by Bob Johnson »

Bob Johnson

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mom2klegirl

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Re: A newbies story with a couple of questions (long)
Reply #4 - Nov 20^th, 2009 at 1:49pm

Thank you all for answering and taking time to read my post

I know that currently I can't take very much as far as medicine goes anyway (I'm pregnant with baby #2!) and so I'll be doing a lot of home remedy type trial and error anyway. Thanks to being diagnosed as migraines I know several things that do not work for me, like Imatrex which just made me feel worse. I am hoping that the neurologist has some knowledge of headaches because there are no headache clinics in our area and even so our insurance would require another referral. Thank you again for putting my mind at ease about the night-time only attacks. I was so worried that that meant I was going to have to start the search all over again! I'll definitely come back and post what happens at the appointment Monday and where we go from here. I'll also be printing off some information from here to give to the doctor since I'm convinced that I am suffering from CH. Thank you again! Grin

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Martin CH.com Veteran Offline Ready for anything this world can dish! Posts: 101 Ottawa, Ontario Gender:	Re: A newbies story with a couple of questions (long) Reply #5 - Nov 20^th, 2009 at 1:54pm Glad to help. Best of luck to you and your family! We'll be waiting for that update
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: A newbies story with a couple of questions (long) Reply #6 - Nov 20^th, 2009 at 1:58pm Ask about oxygen at a high flow rate. I believe I have read that it is safe to use to abort CH during pregnancy. Congratulations! Jeannie
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mom2klegirl

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Re: A newbies story with a couple of questions (long)
Reply #7 - Nov 20^th, 2009 at 2:01pm

Jeannie wrote on Nov 20^th, 2009 at 1:58pm:

Ask about oxygen at a high flow rate. I believe I have read that it is safe to use to abort CH during pregnancy. Congratulations!

Jeannie

I will do that! I was wondering about if the oxygen would be safe during pregnancy. It seems like nothing helpful ever is lol. Thanks again!

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bejeeber

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Re: A newbies story with a couple of questions (long)
Reply #8 - Nov 20^th, 2009 at 2:15pm

I hate to say it, but since your upcoming neuro isn't a headache specialist don't get your hopes up too much. Non headache specialist neuros are known to be an ignorant lot when it comes to CH.

Here's hoping the O2 will work good for ya. Your neuro will likely know nothing of O2 hi flow rates and non-rebreather masks. So yeah, researching it yourself and making your own call will probably be necessary.

So far whenever I've seen someone say Imitrex didn't work or made them worse, it's been because they were prescribed the pill form (injections are actually the most effective form). Were you trying pill form?

I do realize that Imitrex is not an option for you at this time though, due to the pregnancy.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: A newbies story with a couple of questions (long) Reply #9 - Nov 20^th, 2009 at 7:49pm I'm in agreement with bejeeber with regards to Imitrex in the pill form. I was on the Imitrex pill before I found this site. O2 was the answer for me. It was all a result of the education I got from the wonderful people on this site. All the best
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Joni

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Re: A newbies story with a couple of questions (long)
Reply #10 - Nov 21^st, 2009 at 9:43pm

Saw this online as I was searching possible side effects of O2. I don't know much about it...just passing this along.

* One of the common causes of oxygen therapy side effects is due to the equipment used for oxygen supply. Many times, due to improper handling of the equipment, the oxygen supply gets contaminated which can cause several health problems and possible death too. Also, if the filters are not cleaned or if the breathing tubes are not changed regularly, this can cause patients to inhale oxygen that is polluted by air borne particles.
* People who have undergone hyperbaric oxygen therapy have complained about feeling tiredness and nausea after the treatment session. They may also experience temporary vision problems and sometimes slight difficulty in breathing after undergoing this therapy. Severe pain in the ear and sinus problem are also known to occur due to increased pressure in the oxygen chamber. However, these side effects are not permanent and do not stay "Side Effects of Oxygen Therapy

Health professionals are of the opinion that oxygen therapy is a very safe treatment method, however, there have been reports of side effects from several patients. Most of the times, these side effects are very minor and do not last for a long time. Nevertheless, there have been cases (though very rare) where oxygen therapy has led to severe side effects.
for a long time.
* One of the serious hyperbaric oxygen therapy side effects is caused due to oxygen toxicity which can cause pulmonary and central nervous system disorders as well as seizures. Some people have also reported to have experienced a feeling of claustrophobia in the oxygen chamber.
* Home oxygen therapy side effects can be caused when the individual tries to alter the flow of oxygen by himself. This has to be avoided completely and if you think that the oxygen supply that you are getting is not adequate, your health professional should be contacted who in turn will inform the home care supplier to change the oxygen flow rate.
* Another cautionary measure for people using home oxygen therapy is to keep the oxygen equipment at a distance not only from heat sources including gas stove, candle flame, etc., but also from hair sprays, aerosol cans, etc. because these are inflammable.
* Apart from this, severe oxygen therapy side effects can be experienced by people who have health problems, like, asthma, upper respiratory tract infection, middle ear surgery, etc. and hence they should stay away from this treatment method. Even pregnant women should not be given this therapy as this can cause harm to the mother as well as to the fetus. Other than this, the condition of people who have high fever or some kind of viral fever may worsen due to oxygen therapy.

These oxygen therapy side effects are very rare and most likely do not cause any permanent damage. However, being aware of the possible side effects will help individuals in preventing or controlling the causes that trigger them."

My point is that if I were pregnant, I would ask my OB/GYN to investigate this.

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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