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New here and wanted to introduce myself (Read 2163 times)
littlebit
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New here and wanted to introduce myself
Feb 16th, 2010 at 11:59pm
 
I originally starting getting these about 9 years ago. They 85% of the time get me in my sleep. Waking up crying. I was misdiagnosed over and over again. Last June I was offcially diagnosed with CH's. I'm still learning what to do because heaven knows nothing I ever tried ever helped. My ch's usually run about a month to month in a half with as many as 4 episodes a day. I can't handle it when it gets into about 2 1/2 weeks. I just want to die. I just started another cycle 4 nights ago. I'm dreading it so much! I just started pred. today. I have oxygen and imitrex. I haven't had much help with the oxygen. Anyone have any tricks. Anyway I'm glad I found this place. Somedays I just dont feel like I can take another one.
Littlebit
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Skyhawk5
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Re: New here and wanted to introduce myself
Reply #1 - Feb 17th, 2010 at 12:51am
 
How are you using the oxygen (O2)?
With a NON-REBREATHER mask with a bag on it? That's what we need. What is the flow rate?

If not used properly, O2 will not give you satisfactory results. Nasal canula's (nose tubes) are no good , flow rates of at least 15lpm are condidered a minimum for most of us.

If you don't have at least what I've mentioned, then you must get a better setup. Many of us need higher than 15lpm and buy our own regulators and the O2pti mask abvailable on this site. The O2pti is made just for CH.

Don
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« Last Edit: Feb 17th, 2010 at 12:54am by Skyhawk5 »  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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bejeeber
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Re: New here and wanted to introduce myself
Reply #2 - Feb 17th, 2010 at 1:32am
 
Yes we have tricks!

Don's right, there's a more effective way to use O2 than is ordinarily prescribed.

Follow these guidelines and you'll likely get much better results: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Hopefully the imtrex you have is injectible (the most effective form) or at least inhaler. Pill form is unfortunately often prescribed by uneducated doctors, and doesn't do much for most CH sufferers.

If you have injectible, here's a critical trick we have up our sleeves:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Your experience sounds very familiar to me and many others on here I'm sure. Fortunately, by asking questions and researching on this site as you are doing, a lot of us have found better ways to fight this beast .  Smiley







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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.
bejeeber bejeeber Enter your address line 1 here  
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Re: New here and wanted to introduce myself
Reply #3 - Feb 17th, 2010 at 8:42am
 
Have you tried energy drinks with the o2. monster red bull ect. I havent used with O2 yet but the drinks have seemed to help by themselves but others have wrote that together they can work pretty well. i think going nuclear on the ch's is how it was described.
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Bob Johnson
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Reply #4 - Feb 17th, 2010 at 3:23pm
 
It's usual to start using a preventive med, such as Verapamil, a the same time as you start the Pred. Reason: it takes Verap several day to become effective and some dose adjustment may be needed.
--
For your general learning:

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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]
=====
This is a widely used approach. Suggest you print and use to discuss with your doc.

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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littlebit
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Reply #5 - Feb 17th, 2010 at 4:41pm
 
Thank you everyone for your input it was really helpful. I do have the nasal thing for the oxygen. I will get that changed and follow the directions that were posted. My doctor had me on verapamil and pred. the 1st bout back in June. I've had 2 others since then (on one right now) but the past 2 times he hasn't prescribed the verapamil. Should I tell him I need that? Also in June I specifically asked for the injectable Imitrex and he said no one uses that anymore and he just gave me pill form. It takes to long. Lately I'll take it before I go to sleep which has had varied effects. I'm scared I've never had them this frequently. Usually I'm about one attack a year to year and a half. I've had 3 now since june. Again thank you for your help and your understanding.
Littlebit
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bejeeber
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Re: New here and wanted to introduce myself
Reply #6 - Feb 17th, 2010 at 6:44pm
 
littlebit wrote on Feb 17th, 2010 at 4:41pm:
I specifically asked for the injectable Imitrex and he said no one uses that anymore and he just gave me pill form.


Sigh, the thing about doctors is that they are complete a-holes, and they routinely deny CH patients the one form of imitrex that could bring them major relief, condemning them to the use of the pill form that will leave them experiencing the worst pain known to mankind.

Countless countless people report this same thing on here all the time.

Ignorant doctors continue to win their war against the hippocratic oath big time.
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« Last Edit: Feb 17th, 2010 at 6:44pm by bejeeber »  

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.
bejeeber bejeeber Enter your address line 1 here  
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Bob Johnson
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Re: New here and wanted to introduce myself
Reply #7 - Feb 18th, 2010 at 8:38am
 
I understand your appreciation of you doc but he is not coming across as one with knowledge/experience. Life will be easier if you have access to a headache specialist. BUT, if you stay where you are, we can feed you medical literature to give him--in the hope that he is receptive. Certainly, many of us have had to educate our doc so that we can get good treaments.
=
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 Login or Register On-line screen to find a physician.

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

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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« Last Edit: Feb 18th, 2010 at 8:41am by Bob Johnson »  

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lorac
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Re: New here and wanted to introduce myself
Reply #8 - Feb 18th, 2010 at 9:15am
 
Welcome Littlebit  Smiley

  Hope you can sort it all out soon.
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Reply #9 - Feb 19th, 2010 at 1:15am
 
welcome to a place that you can use to research and connect with people that have and are experincing the same thing.

i am also new to this board and in cycle right now..

I have found this board to be very supportive and alot of information to be found...
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littlebit
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Reply #10 - Feb 19th, 2010 at 4:51pm
 
Mr Dr. is a specialist and my insurance approved him. I'll bring him more info in. I just dont think he knows much. If he isn't receptive I'll see if I can find another specialist. I asked him if I were to get pregnant what could I do if I have a cycle and he said he'd never had a female patient before and had never had to deal with that issue. Does anyone have info on that? Thanks everyone this site is the best. I can't wait for a conference in my area!
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Reply #11 - Feb 19th, 2010 at 6:25pm
 
Cephalalgia. 2009 Jan 19. 
Treatment of cluster headache in pregnancy and lactation.

Jüergens TP, Schaefer C, May A.

Department of Neurology, University of Regensburg, Regensburg, Germany.

Jüergens TP, Schaefer C & May A. Treatment of cluster headache in pregnancy and lactation. Cephalalgia 2009. London. ISSN 0333-1024Cluster headache is a rare disorder in women, but has a serious impact on the affected woman's life, especially on family planning. Women with cluster headache who are pregnant need special support, including the expertise of an experienced headache centre, an experienced gynaecologist and possibly a teratology information centre. The patient should be seen through all stages of the pregnancy. A detailed briefing about the risks and safety of various treatment options is mandatory. In general, both the number of medications and the dosage should be kept as low as possible. PREFERRED TREATMENTS INCLUDE OXYGEN, SUBCUTANEOUS OR INTRANASAL SUMATRIPTAN FOR ACUTE PAIN AND VERAPAMIL AND PREDNISONE/PREDNISOLONE AS PREVENTATIVES. IF THERE IS A COMPELLING REASON TO TREAT THE PATIENT WITH ANOTHER PREVENTATIVE, GABAPENTIN IS THE DRUG OF CHOICE. WHILE BREASTFEEDING, OXYGEN, SUMATRIPTAN AND LIDOCAINE FOR ACUTE PAIN AND PREDNISONE/PREDNISOLONE, VERAPAMIL, AND LITHIUM AS PREVENTATIVES ARE THE DRUGS OF CHOICE. As the individual pharmacokinetics differ substantially, adverse drug effects should be considered if unexplained symptoms occur in the newborn.

PMID: 19170693
==================
Ann Pharmacother. 2008 Apr;42(4):543-9. Epub 2008 Mar 18.
Use of 5-HT1 agonists in pregnancy.

Evans EW, Lorber KC.

Department of Clinical and Administrative Sciences, College of Pharmacy, University of Louisiana at Monroe, Monroe, LA, USA. eevans@ulm.edu

OBJECTIVE: To report and evaluate available data on the use of serotonin 5-HT(1) agonists (triptans) during pregnancy. DATA SOURCES: A PubMed search, limited to English-language articles on human subjects, was conducted (1990-December 2007) using the search terms pregnancy, migraine, and the individual triptan drug names. In addition, the manufacturers of all 7 available triptans were contacted regarding the existence of a pregnancy registry for their drug(s) and the availability of registry reports. STUDY SELECTION AND DATA EXTRACTION: All retrospective and prospective studies reporting on pregnancy outcomes after the use of a triptan were included and critically evaluated. Data from all available manufacturer-sponsored pregnancy registries were also included. DATA SYNTHESIS: Safe and effective treatment of migraine during pregnancy is imperative. DATA INVOLVING SUMATRIPTAN AND, TO A LESSER EXTENT, NARATRIPTAN AND RIZATRIPTAN, EXIST PRIMARILY REGARDING EXPOSURE IN THE FIRST TRIMESTER. THESE DATA SHOW NO SIGNIFICANT DIFFERENCES IN CONGENITAL MALFORMATIONS OR POOR PREGNANCY OUTCOMES WHEN COMPARED WITH EXPECTED RATES IN THE GENERAL POPULATION OR WITH THE OBSERVED RATES IN CONTROL SUBJECTS. THERE IS VERY LITTLE INFORMATION REGARDING EXPOSURE IN MIDDLE AND LATE PREGNANCY. CONCLUSIONS: SUMATRIPTAN APPEARS TO BE A SAFE TREATMENT ALTERNATIVE FOR PREGNANT WOMEN WHO EXPERIENCE NEW-ONSET OR WORSENED MIGRAINES IN THE FIRST TRIMESTER. FURTHER OBSERVATION IS NEEDED PRIOR TO RECOMMENDING ITS USE IN LATER TRIMESTERS. BASED UPON AVAILABLE DATA, THE OTHER AGENTS IN THIS CLASS CANNOT BE RECOMMENDED FOR USE DURING PREGNANCY AT THIS TIME.

PMID: 18349309 [PubMed]
--------------------------------------------------------------------------------


Ther Drug Monit. 2008 Feb;30(1):5-9.
Triptans in pregnancy.

Soldin OP, Dahlin J, O'Mara DM.

Department of Medicine, Georgetown University Medical Center, Washington, DC 20057, USA. os35@georgetown.edu

The triptans are a class of tryptamine-based drugs indicated for in the treatment of migraine headaches. The triptans act as serotonin (5-hydroxytriptamine) (5-HT) agonists by binding to various serotonin receptors, causing vasoconstriction and neuronal inhibition to alleviate migraines. There are 7 types of triptans currently available on the U.S. market: almotriptan, eletriptan, frovatriptan, naratriptan, rizatriptan, sumatriptan and zolmitriptan. The objective of this study was to examine the use and effects of triptans in pregnancy. ALTHOUGH THREE OF THE TRIPTANS HAVE PREGNANCY REGISTRIES MAINTAINED BY THE MANUFACTURER, TRIPTAN USE IN PREGNANCY HAS NOT BEEN EXTENSIVELY STUDIED. INFORMATION ON THE USE OF SUMATRIPTAN DURING PREGNANCY IS RELATIVELY MORE ABUNDANT, BECAUSE IT HAS BEEN ON THE MARKET LONGER THAN THE OTHER TRIPTANS AND MAY ALSO HAVE A HIGHER PERCENTAGE OF THE MARKET SHARE. THERE ARE NO DATA TO SUGGEST TERATOGENICITY FOR ANY OF THE TRIPTANS, ALTHOUGH PRETERM BIRTH RATES APPEAR TO BE ELEVATED.

Publication Types:
Review

PMID: 18223456
============
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Re: New here and wanted to introduce myself
Reply #12 - Feb 20th, 2010 at 10:30am
 
Hi everyone. Glad to find a site for some support and answers, and to meet people who understand what I am going through.

I was diagnosed about 8 years ago after suffering CH for a year straight. They had me on oxygen and imitrex but it never really helped. I ended up going to the chiropractor a couple times and the headaches vanished. Not sure if that solved the issue or the period had ended.

Well they are back. I recognized the pressure on the right side of my head immediately. 'They' say you don't remember pain but boy did I realize fast what was going on. I've been suffering almost daily for 3 months now. I had a couple of weeks with zero headaches and hoped they were gone. However, I realized whenever I had a glass of wine they would return full force. So I do not drink any wine anymore, or anything for that matter. I am petrified for fear of what happens to me.

When I get a CH I am often in pain for 24-48 hours straight. And when it settles down, my head is still sore and in fear of the monster returning. So I cannot relax. Truthfully I am beside myself and at my wits end. My fiancee does not understand what I am goin through, as i refuse to go to the emergency room knowing they cannot help me. My son is scared when I cry. Although crying sometimes relieves the pressure a little bit. I am often 'awake' all night with severe pain. I want to shoot myself right through my right temple. No, I am not suicidal, but you understand what I mean when I say that. Words cannot express the pain I endure. I have my fiancee read information online regarding the severity of pain, but unless he gets one (which I would not wish upon my worst enemy!) he simply does not get it.

I am off to the dr on tuesday for I am sure a referral to a neurologist. I havent used any meds except natural stuff. melatonin and ginko biloba. I guess they will give me oyygen (although my fiancee is afraid it will blow up in the house!) and imitrex. I really do not want to take any crazy meds with side affects. I do not do well with drugs. If I could find a holistic approach I would be thrilled. I heard acupuncture may work? Or perhaps the chiropractor?

I need to learn to somehow manage the pain. I am really depressed and feeling awful and not sure how to handle this anymore. I hate always being 'sick' and not being able to leave the house. It's school vacation I have not taken my 4 year old bowling as I promised. He is so sweet and always takes care of me when I have a headache. I feel incredibly guilty for putting my family through this. 

Sorry for the long post. But I need help, I am desperate  Cry

Thanks for listening, Jennifer
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Re: New here and wanted to introduce myself
Reply #13 - Feb 20th, 2010 at 1:54pm
 
Hey there JenniMcCarthy,

I think you'll find some really helpful advice here. Smiley

I'll attempt to dish a bit out right now.  Smiley

First of all I'd recommend just telling Mr. ignoramo fiance to shut the f*** up with his bull about O2 blowing the house up.  Cool

The newer,hi liter flow, non rebreather mask method of O2 use could be a real lifesaver for you. The oxygen info tab on the left of the page here should be treated as gospel. Personally I just go to a dcotor with a goal of getting any sort of O2 prescrip they feel comfy writing, then promptly crank the liter flow up to a level that will actually work.

Imitrex. Oh man this is getting so old now that multiple times daily people come on here having been prescribed the least effective for CH pill form of imitrex instead of the most effective form, injectible. Hopefully this is not the case with you. If you have an injection prescription or can get one one, the "imitrex tip" info (also a link on the left of this page) is some critically helpful info, if you haven't discovered it already.

About your neurologist referral. You must seek out a bonafide headache specialist. The run of the mill neuorologist who is not a headache specialist rivals your fiance in ignorance about CH, and will offer about the same quality of advice.

I've had fantastic results with accupuncture for tendonitis in the wrist, and believe in it whole heartedly. Not for CH though I'm afraid. From the reports I've seen, and my own experience, don't get too hopeful about it.

Natural treatments. Those are good!  Wink Can't honestly say Melatonin or Ginkgo ever did anything for me, but I have seen others here report that melatonin before bed helped them get through the night sans attacks. If you're ready to consider the big guns in the medicinal plants dept., you might want to research the use of sub hallucinogenic doses of psilocybin. Really. Seems weird, I know, but it is actually very promising from what I've seen, with reports of tremendous results. You could search the subject here or at the clusterbusters.com message board.

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« Last Edit: Feb 20th, 2010 at 2:34pm by bejeeber »  

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.
bejeeber bejeeber Enter your address line 1 here  
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Re: New here and wanted to introduce myself
Reply #14 - Feb 20th, 2010 at 2:03pm
 
Your fear of meds is affecting your ability to care for yourself. Fear leads to paralysis and not enlightenment.
===================

Re: Is there any med that doesn't have bad side effect
Reply #1 - Dec 26th, 2009 at 5:19pm       It's critical for your peace of mind to understand that Federal law requires the listing of side effects. What is almost NEVER expressed here in our messages is the actual rate of occurrence. If you get to the library or drug store and read the PDR (Physicians' Desk Reference) you will see the rate is 1/2% or less and upward.

Rates are POSSIBILITIES, NOT PREDICTIONS. It's a mistake to take every listed side effect as a statement that this WILL occur for you.

Individual biology and our personal medical history is so complex that it's extremely difficult to predict what, if any, reaction you may have to any particular drug or combination of meds that you may be taking. Your single, best protection is to get from your doc/pharmacist, a list of the possibilities and then monitor yourself. Few side effects are life threatening at such speed that you can't respond to signs. Know the signs of a developing issue allows you to contact you doc for advice.

I'm troubled by the number of folks who post comments about side effects, written in such a style that it conveys that this or that side effect is always associated with XX drug. These statement are a disservice to people who have no background in medicine, to new-comers who need information and not fear.

Another self-protection: never accept such a statement which is not given along with some information about degree/frequency of occurrence. Appreciate that we are not medical profs. and confirm what you read here before taking action upon our messages.
------
A message I posted about this same issue re. dogs. The message is the same......

I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
--------------------------------------------------------------------------------


This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

We have a member whose Vizsla would have died from a systemic fungal infection without a med. The problem is that this med has serious and frequent side effects--but there were no treatment options.

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

This is a wholly subjective judgment which no one can make for us. We make a decision about how much risk tolerance we have; what are we willing to bear.

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects. 
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Bob Johnson
 
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Joni
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Re: New here and wanted to introduce myself
Reply #15 - Feb 20th, 2010 at 9:49pm
 
Bob Johnson wrote on Feb 20th, 2010 at 2:03pm:
Your fear of meds is affecting your ability to care for yourself. Fear leads to paralysis and not enlightenment.
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Re: Is there any med that doesn't have bad side effect
Reply #1 - Dec 26th, 2009 at 5:19pm       It's critical for your peace of mind to understand that Federal law requires the listing of side effects. What is almost NEVER expressed here in our messages is the actual rate of occurrence. If you get to the library or drug store and read the PDR (Physicians' Desk Reference) you will see the rate is 1/2% or less and upward.

Rates are POSSIBILITIES, NOT PREDICTIONS. It's a mistake to take every listed side effect as a statement that this WILL occur for you.

Individual biology and our personal medical history is so complex that it's extremely difficult to predict what, if any, reaction you may have to any particular drug or combination of meds that you may be taking. Your single, best protection is to get from your doc/pharmacist, a list of the possibilities and then monitor yourself. Few side effects are life threatening at such speed that you can't respond to signs. Know the signs of a developing issue allows you to contact you doc for advice.

I'm troubled by the number of folks who post comments about side effects, written in such a style that it conveys that this or that side effect is always associated with XX drug. These statement are a disservice to people who have no background in medicine, to new-comers who need information and not fear.

Another self-protection: never accept such a statement which is not given along with some information about degree/frequency of occurrence. Appreciate that we are not medical profs. and confirm what you read here before taking action upon our messages.
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A message I posted about this same issue re. dogs. The message is the same......

I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
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This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

We have a member whose Vizsla would have died from a systemic fungal infection without a med. The problem is that this med has serious and frequent side effects--but there were no treatment options.

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

This is a wholly subjective judgment which no one can make for us. We make a decision about how much risk tolerance we have; what are we willing to bear.

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects. 


Bob, you have made 2 friends with this post.  One with my daughter, a pharmacist, who constantly reminds me of just what you have posted.  And another with me, because my Vizsla baby will be born on March 9th and ready to come home with me on my birthday the first part of May.  Smiley
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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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JenniMcCarthy
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Re: New here and wanted to introduce myself
Reply #16 - Feb 21st, 2010 at 11:37am
 
Thank you kindly for the advise. Hopefully I can find a dr on board with the O2, and I will try whatever I need to. This is ruining my life.
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