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Cluster Headache Help and Support >> Getting to Know Ya >> Newbie needs help please!!!! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1337399815 Message started by Saladin27 on May 18th, 2012 at 11:56pm |
Title: Newbie needs help please!!!! Post by Saladin27 on May 18th, 2012 at 11:56pm
First, I'd like to mention that I think you people are freakin ANGELS!!!! I've never met any of you and you've helped me more in 4-5 days than any doctor in 15 years.
I'll start with a shorter post for those who dont want to read too much. I have an appointment in 11 long days (I'm i a cycle now [smiley=bigcry.gif] ) with a Neuro and I need good, scholarly and referenced articles about CH to make sure he doesn't overlook CH when he diagnoses me. I also need articles about Oxygen. Thank you. |
Title: Re: Newbie needs help please!!!! Post by Saladin27 on May 19th, 2012 at 12:50am
Now for a little more info.......
I'm 26. Had them since age 11 or 12. [EDIT: upon recalculation with my parents it turns out my first cycle was at the age of 16 not 11 ] Remission 1-2 years. cycles two weeks long (ya I realize that makes me lucky. Im so sorry for those who get them more often) I only realized they were CH a few days ago thanks to the wikipedia page about CH. I was very touched when I read all the info online on various sites because it was eerie how these sites seemed to predict ALL my symptoms and even my social behavior in a very detailed way. I'm convinced I have CH and I cant be that stupid ( I have an MEng degree in structural engineering) In the past five days here is what I have done. Saw my family doctor, gave me no meds, gave me a referral to a Neuro (system is a little funny in canada). Best appointment I could find is in 2 months. Went to a walk-in clinic. Doctor gave me Diclofenac potassium (which is a slightly stronger Advil) --This is like taking candy. He also gave me something useful. Its called Axert (Almotriptan malate) tablets. Which is very similar to Imitrex (sumotriptan). I know many people think tablets are useless because they're too slow but they are the best thing that has happened to me. Now I dont have to go through a 4-hour beating not knowing when the monster will leave. At least I know I will only go through 4; 45minute torture sessions per day. This stuff works 100% for me, first thing better than 0% since I was 12 years old. [Edit: 16 years old not 12] I also went to an emergency room. I read the forums, you guys already know what happened. I wasn't taken seriously, they kept calling them migraines. One nurse told me "oh I know what your going through I get migraines too". I insisted they consider cluster headaches and they gave me an appointment to see a Neurologist on May 29. They can do better, If they knew the pain they would have given me an appointment next day. It has been done. Thanks to this very forum, I tried sticking my head in freezing cold water (thats one good thing about montreal and its frigid weather, tap water can be sooo beautifully cold) This is the second best thing that has happened to me (Axert being the first). This takes me from a stumbling, fumbling kip9 down to a kip4 or 5. I think it may be aborting the attack altogether but I'm not sure. I need to experiment a little more. I have a question about Axert/Imitrex (let's assume they are the same, I realize they may be very different, but if you do a little research you will see they have the same mechanism). First of all, I'm getting side effects that are pretty alarming. Faster heart rate, out of breath, tingly feeling in my forehead and extremities, nausea, smaller dual-sided headaches which are fun compared to CH, neck pain/stiffness, I'm also spacey and lost and cant focus. Do many people get this? Wtvr, still waaaaayyyy better than my attacks. Second, and more importantly I feel like they are affecting my cycle altogether and preventing it from finishing. I used to get a break between headaches. Now I'm in a very repetitive circle of drugs and headaches. Get a headache -take half a pill - 5 or 6 hours pass - meds wear off - get a headache - take a half a pill - 5or 6 hours ......etc, etc . Its been 2 weeks now. My cycle is supposed to be over. Is the Axert doing this? Is this just me, maybe my cycles are getting longer now that I'm older. I cant even really tell If I'm at the peak of the cycle because I dont dare stopping the Axert. What if now the beast is waiting to come back with a vengeance? |
Title: Re: Newbie needs help please!!!! Post by Saladin27 on May 19th, 2012 at 1:41am
Oooh I have already writen down my symptoms in a detailed way 3 times.
1. Just my symptoms 2. My symptoms compared to classic CH symptoms. (In a table, categorized, high medium and low correlation) 3. My symptoms compared to classic Migraine symptoms. Seriously, I drew graphs of my pain vs. time. Also, I'm in Canada. I DIDNT pay for anything. Doctors are concerned with keeping cost down over here. They are veeerrry reluctant to order expensive tests. My problem is that I'M not a doctor. He wont care much for what I think I have. Which is understandable, he has his professional responsibilities. I need good, scholarly, referenced articles to show him in case he's not too familiar with CH. Thank you sincerely for your reply. I WILL follow your advice on the vitamin D3. |
Title: Re: Newbie needs help please!!!! Post by Saladin27 on May 19th, 2012 at 4:06pm
I looked up the doctors from the ouch website. There are two.
Dr. Ivan Woods has a 2 year waiting list. Montreal Migraine Clinic ( I have yet to find out.Nobody answers the phone even during business hours. They take messages and I've left one. Nobody answered me. Their message even states "for emergencies go to an ER") As for me playing with the dosing you're right its dangerous. However I have a limit of two pills/day. I get more than two HA/day. What would you do? Play with the dosing or take on the beast? I get kip9s. (Never passed out FROM the pain, often passed out after the pain, contemplated suicide, banged head, pulled hair out etc.....) At least I don't EXCEED the dosage right? I have been sent great articles from members of this site. THANK YOU EVERYONE!! I still want to know other's experience with Imitrex/Axert. Rebound headaches?? Prolonged cycles?? Side effects?? |
Title: Re: Newbie needs help please!!!! Post by Bob Johnson on May 19th, 2012 at 6:53pm
Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)
================================================================= Sumatriptan has a hard initial punch and relatively short effective life--a combination which works well for most Cluster attacks. However, some people, whose Clusters have a longer life, find that the med is wearing down even as the pain continues. One can understand how this sequence comes into one's thinking: Attack, Imitrex injection, pain continues, it's a rebound cluster which has developed from the Imitrex. In fact, this is a recurrence of the attack, not a rebound. This is one of the reasons that several other triptans were developed having less initial punch but longer effective life. While aimed at the migraine crowd, at first, a number of cluster users have found this characteristic of value to them. ============= We regularly see comments that Sumatriptan changes the experience of CH--increasing frequency and/or intensity. What is usually missing are any data on frequency of this experience, duration of changes, source of the claim, and so on. Several years ago I searched medical literature for some specifics on this experience and could only find the two abstracts (below). In January, 2011 I searched for more current reports and could not find anything in the previous 10-years. My conclusion is: the absence of later data suggests that there is little experience stimulating reports/study and that this is not an important problem. The last point is reinforced by the observation that in the few reported events, that the changes in headache reversed when Sumatriptan was dropped. As with other medical topics, it's important that we qualify our "truth" claims with parameters/limits which don't distort real life experience. It's not much help to people to warn them off using a good treatment with a silent implication that some side effect is widespread, enduring, even dangerous. We are always, with every medical treatment, struggling to balance benefit vs. risk. As we expect our physicians to fairly present the pros & cons of a treatment/procedure to us, we should, given our limited knowledge & skills, try to do the same. ================================== Headache. 2000 Jan;40(1):41-4. Alteration in nature of cluster headache during subcutaneous administration of sumatriptan. Hering-Hanit R. Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel. Abstract OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache in four cases. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine. BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with sumatriptan in cluster headache are limited and report conflicting findings. METHODS: FOUR CASES ARE DESCRIBED. RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. WITHDRAWAL OF THE DRUG REDUCED THE FREQUENCY OF HEADACHES AND ELIMINATED THE NEWLY DEVELOPED TYPE OF HEADACHE. CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug. PMID: 10759902 [PubMed - ======================================= Headache. 2004 Jul-Aug;44(7):713-8. Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients. Rossi P, Lorenzo GD, Formisano R, Buzzi MG. Headache Centre, INI Grottaferrata, Rome, Italy. Comment in: Headache. 2005 Sep;45(8):1089-90. Abstract OBJECTIVES: To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. BACKGROUND: Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. METHODS: Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. RESULTS: ALL SIX PATIENTS had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. IN ALL PATIENTS, THE CH RETURNED TO ITS USUAL FREQUENCY WITHIN A FEW DAYS AFTER SQ SUM WAS WITHDRAWN OR REPLACED WITH OTHER DRUGS. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. CONCLUSIONS: Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks. PMID: 15209695 [PubMed ======== An effective alternative to Imitrex and has the advantage of a much lower per dose cost. Print out this abstract and discuss with your doc. -- 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 -------------------------------------------------------------------------------- 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. ===== Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ] |
Title: Re: Newbie needs help please!!!! Post by Saladin27 on May 20th, 2012 at 12:46am
Wow, great reply Mr.Bob Johnson. Thank you very much. I've read your post 4 times already. I continue to be amazed at the kindness of the members of this forum. Again: THIS WEBSITE HAS HELPED MORE IN THE LAST FEW DAYS THAN ANY DOCTOR IN THE LAST 10 YEARS.
New development: I believe the axert may be wearing off. Today is the first day that I experience some pain during the med's effective period of 5-6 hours. Only Kip1-2 though, mainly when I encounter my triggers (heat, skipping meals, cigarettes) This is starting to freak me out. I don't want to go back to the "dark days" when I had absolutely no weapons to fight my CH. In a way the axert has made me weak. I don't think I can do what I used to do anymore (i.e. tough through 3 hour kip9). One time I was caught in bumper to bumper traffic in blazing hot weather without AC and I was hit with a kip9. I managed to continue driving for 45min. Mostly 1 hand on the wheel, 1 hand on my eye/head. Staring at the floormat glancing at the road when I released the brake. I was probably 23. |
Title: Re: Newbie needs help please!!!! Post by wimsey1 on May 21st, 2012 at 8:22am
I'm surprised no one's mentioned the use of O2 as an effective abortive, coupled with an energy drink. Unless I just missed it. In case it hasn't been addressed, read the link at the left. I, and so, so many others, have found O2 to be the best and primary abortive for all hits. Attacks that would last from 45 mintues to 3 hours now take 2-5 minutes to abort. But, the right flow, technique and equipment must be in play. Otherwise, O2 can be useless. Is this something you have tried? If so, how? Blessings. lance
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Title: Re: Newbie needs help please!!!! Post by dv8r_dragon on May 21st, 2012 at 8:44am
There isnt a lot of info out there on our condition. One of the biggest issues we as CH suffers have is lack of research. Its getting better...slowly but surely. What little info we do have can be found on previous posts, and this awesome forum. At the top left of this forum is a list of helpful links to research, tips and other forums. They can tell you about CH, diagnoses procedures, surveys...best thing to check out is O.U.C.H. I have found documents that I was able to give to my physician and my neuro to help. This of course is only helpful if the doc is helpful. You may have to travel a bit to get the right tests and treatments. Good luck to you.
Love and Gratitude! Stay PF my friends! |
Title: Re: Newbie needs help please!!!! Post by Saladin27 on May 21st, 2012 at 5:23pm
Thanks for the replies Lance and dv8r_Dragon.
For the past 10 years doctors have been calling them migraines so thats what I have been researching. When I started reading about CH about 10 days ago (and I have done a LOT of reading) I became 110% convinced that this is what I have. In my case its not ambiguous. I have ALL the symptoms (or 95% of them). Really its the description of the pain and the videos on youtube that got me. I am aware about O2. However I have yet to be diagnosed. The members of this site have been great. I am very prepared for my appointment with the neurologist on the 29th. CONSIDER ME HELPED!!! I will update after the appointment shortly. Unless I'm extremely frustrated/disappointed then it may take a few days. Another update: My cycle is losing momentum. I'm down to 2 HA/day only when I'm sleeping. Axert still pretty darn effective. |
Title: Re: Newbie needs help please!!!! Post by Mike NZ on May 22nd, 2012 at 5:05am
Before the appointment make notes on what you want to say, questions you want answered and what you'd like to get from the appointment. It's so easy without notes to forget something as soon as the appointment is over.
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Title: Re: Newbie needs help please!!!! Post by Saladin27 on May 29th, 2012 at 10:58pm
WOOOOHOOOOOO!!!! YES!!! NYA NYA NA NA NA!!! um huh um huh ;D :D :D :D :P :) ;)
GUESS WHAT!! I WAS RIGHT!!! I HAVE CH!!! NEURO CONFIRMED IT !!! Dont get me wrong I'm not have happy to have suicide headaches. But I've already had them for 10 years. What happened is that I found out that CH exists about two - three weeks ago and today a doctor diagnosed me with it. I've never had relief from these freakin cluster bombs. NOT UNTIL NOWWWWW!!!!!!!! ok ok so here's what happened. I went to the doctor with an arsenal of preparations. A long detailed report written by me about my symptoms and meds I've tried etc... I had a CT scan report from 5 years ago during one of my other cycles. I had articles in french and english (Quebec is bilingual) about CH, oxygen, the effect of triptans on the CH cycle etc.. I was lucky! He was a good one folks! He already knew what CH was and he already had other CH patients (his office is right accross the street from one of the only two OUCH recommended clinics in Montreal. what are the odds? I didnt even choose him, the ER did) Actually he even had a patient who couldnt take it anymore and decided to end his life. That said, he wasnt too interested in any of my articles. And we didnt really spend more than 1-2 min on my report of symptoms. Didn't bother me one bit. He already has the knowledge. He did ask to take my CT Scan report and my report on symptoms cuz it was soo freakin nice and professional!!! Diagrams and all. In french. ;) First he asked me to describe my headaches quite briefly. Then he asked a series of questions that are straight to the point. How long is remission? ever get anything in b/w cycles? How long is cycle? etc...Then he said the magic words "Sure sounds like CH" He gave me three prescriptions. Prednisone (I'm probably not gonna take that unless my CH is realllly affecting work in an unacceptable manner) . Imitrex nasal spray and 02 with the proper specs (10-12 LPM max 15LPM , non rebreather mask). With an address where i can get this. One little negative point. Batch this is for you (I didnt forget your advice). When I mentioned the vitamin D3 and the blood test he made a funny face then said NO! in a firm way. Wtvr I can get that blood test from my family doctor. I didnt want to argue with a DOCTOR. It makes you go from "intelligent person" straight to "obnoxious, hard headed know-it-all" in about 2 secs flat. They dont respect internet forums as a source of knowledge. I DO THOUGH!!! Results speak for themselves. THANKS SOOOO MUCH TO ALL THOSE WHO HELPED ME. I would like to add this doctor to the OUCH list. Wonder if I can do that.... |
Title: Re: Newbie needs help please!!!! Post by Skyhawk5 on May 30th, 2012 at 2:12am |
Title: Re: Newbie needs help please!!!! Post by Mike NZ on May 30th, 2012 at 2:13am
Good to hear that the appointment was a success, although I'd hoped you didn't actually have CH but something that would easily go away with the right treatment. However you're in the right place to learn even more about CH.
I'm surprised that he didn't give you a long term preventive like verapamil, lithium or topomax as the prednisione is only a short term preventive. Maybe this is something you can take up with your GP? For the oxygen, once you've got it there is nothing to stop you using a higher flow rate. I know that for me I can kill a CH off in about 5 min at 25lpm but at 15 it takes over twice as long. Do get one of the optimasks from this web site, it's so much better than the standard non-rebreather masks you can get. You can make your own mind up about the vitamin D3. I just know that it seems to be working very well for me and quite a lot of other people. |
Title: Re: Newbie needs help please!!!! Post by RichardN on May 31st, 2012 at 10:22pm
Great News Saladin
Re the 02 and mask. The non-rebreather mask you will get from your med supply will have a 1-litre bag, with two exhalation ports (one with a valve) on the side. You will need to modify this a bit for maximum effect . . . until you get an O2ptimask with the big green 3 litre bag, designed for clusterheads and a huge improvement over the 1 litre bag we all used before it was available. So: ng Pull the one little rubber valve off the exhale port and then tape up both sides . . . remember, you need 100% 02. Crank your regulator up to 15 lpm and allow the bag to fill . . . hold tight to your face and inhale .. . . crack the bottom of the mask slightly for the exhales (since you've taped the exhale ports) and repeat. I used to take about a 4-5 second inhale (you're breathing the 02 in the bag, plus the 15 lpm the reg is delivering) and about a 3 second exhale (I think the 1 litre bag will fill in about 3 1/2 seconds at 15 lpm). I tended to squeeze the bag on the inhales, NOT to force 02 into my lungs, but to know when the bag is flat. IMPORTANT! . . . the little green strap on the mask is good for hanging your mask on the tank or for use while driving if you get hit on the road, but NEVER, EVER USE AT NIGHT! If you're hit at night, wake, put on the mask, huff til it peaks and begins to "whoosh" away, it's too easy to lay back down with the mask on and finish him off. If you have the strap on and fall asleep, you'll wake strangling for air when the tank runs out . . . NOT fun. If you make sure and hold the mask to your face and drift off, the mask will fall away and you'll just wake with an empty tank. You're gonna love the 02 . . . so glad you cleared the 02 hurdle. Be Safe PFDANs Richard |
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