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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Cluster-LIKE headache http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1288814441 Message started by Bob_Johnson on Nov 3rd, 2010 at 4:00pm |
Title: Re: Cluster-LIKE headache Post by midwestbeth on Nov 3rd, 2010 at 4:20pm
Always a good reminder! Thanks for posting this, Bob.
My FIL has a friend who had the most excruciating headache of his life during a meeting. Ambulance was called and he was taken to the hospital. The Dr's initial Dx was clusters until the test results came back. He has an inoperable aneurysm that could kill him at any time. So far he is doing well and enjoying life to the fullest. Cluster Headache is not the worst diagnosis you could get from the Dr. If the Dr's find something, it usually isn't good news. |
Title: Re: Cluster-LIKE headache Post by his wife on Nov 3rd, 2010 at 4:29pm
This only reaffirms your thread on "Do no Harm" from last month Bob. The first response to any newbie (or not so newbie) should be, and I believe for the most part has been, to get a firm diagnosis from a headache specialist. It brings up a real concern when treatments fail that seem to work so well in others. My fear is the small number of docs who are as well versed as you are on the subject, versus the vast majority who are not, could surely result in catastrophic consequences for some.
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Title: Re: Cluster-LIKE headache Post by Ginger S. on Nov 3rd, 2010 at 4:47pm
Excellent Post Bob ! It's amazing the number of illnesses that can cause CH like headaches. Definitely food for thought for newbies and oldies alike. 8-)
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Title: Re: Cluster-LIKE headache Post by dougW on Nov 3rd, 2010 at 5:15pm
Thanks for posting this Bob, it is a good reminder. Secondary/Other conditions has often been under-discussed in my opinion. Changes in patterns and/or new symptoms may need to be investigated.
I note the article "Cluster Headache Mimics". We had the pleasure of having Dr. Dale Carter present this paper and other thoughts at the last ClusterBuster conference in Portland. Wonderful presentation from an informed Doc. Doug |
Title: Re: Cluster-LIKE headache Post by Mike NZ on Nov 4th, 2010 at 1:24am
Perhaps this topic should be stickied and people who are new to the forum can be pointed to it, especially when they are reluctant to get a diagnosis from a headache specialist?
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Title: Re: Cluster-LIKE headache Post by wimsey1 on Nov 4th, 2010 at 8:23am
I agree. This is such valuable information, and it would provide a good copy for those who want to inform their doc about what might be CH or might be something different. I haven't had good luck with docs looking up medical abstracts, but when I hand them some info they generally do look at it. Good work as always, Bob. lance
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Title: Re: Cluster-LIKE headache Post by Tara Ann on Dec 13th, 2010 at 8:52am
Great Info, thanks. I often wonder if I was misdiagnosed because I have medication (and O2, nerve blocks, etc)resistant chronic CH. I have been on everything in different combo's, dosages, etc, and a herd of different docs, referrals, hospital admissions... All over more than 10 yrs now. My most recent neurologist/headache specialist told me there is nothing else to try and he can't help me (like many others before him) I'm so used to hearing that now.
I'm going to print that out and bring it to the next neurologist I find. Thanks again! |
Title: Re: Cluster-LIKE headache Post by Randy Flowers on Jan 18th, 2011 at 12:57am
Thanks for the help everyone. I did go to a neurologist 2 years ago when i first got these same headaches for 2 months. He said i had migraines and also ran a full CAT scan looking for aneurisms and for brain tumors, etc. The CAT scan came back perfect. He gave me perscription meds for the migraines, which made the headaches worse. I then read a number of books, etc that said DO NOT take the rebound causing meds the neurologist gives you or the over the counter rebound causing migraine meds with caffeine in them. So, was kinda digusted that the neurologist gave me those, so have been reluctant to go back to a neurologist this time. Guessing i dont need another CAT scan, as it was perfect before and the same exact headaches now two years later. Should i go to a neurologist again though, or to a different type of MD??? Have been thinking i would go instead to an Osteopath, since it seems so related to the neck (and both the rolfer and the chiropractor say i am twisted and 'out of alignment').
Neurologist or Osteopath or both or something else??? Thanks! Randy :) |
Title: Re: Cluster-LIKE headache Post by JustNotRight on Jan 18th, 2011 at 6:20am Randy Flowers wrote on Jan 18th, 2011 at 12:57am:
;) Headache Specialist. |
Title: Re: Cluster-LIKE headache Post by pubgirl on Sep 18th, 2012 at 10:18pm
What a great post Bob. CH is a "chronically" misdiagnosed condition-( under and over diagnosed ) and I have always banged on endlessly about asking the right questions in the right way before giving advice - a good example is the dangers of triptans for BAM (could kill you!) and over-medication of CH.
Luv ya Bob! |
Title: Re: Cluster-LIKE headache Post by hell@back on Jun 1st, 2013 at 6:58pm
I can say for sure now after suffering cluster like headaches for 15 years that there are many health problems that cause clheadaches. I have suffered a neck and head injury at a young age and at 25 I began getting episodic cl hd. at 38 they became chronic. that change from episodic to chronic sent me into a downward spiral, but it led to a discovery that I have problems in my neck that I believe are causing them. my neros think im crazy but after getting on tizanidine and off cluster headache meds my clheadachs stopped I know I live a very different life than I used to but I am headache free. don't give up, don't give in . there may come a day when its over and your life starts again. maybe things will be better then ever.
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Title: Re: Cluster-LIKE headache Post by shortstraw on Mar 6th, 2014 at 5:09pm
Thanks for the post Bob. I am one of those newbies (not to pain) who thought my path was clear. Your information has given me a lot of food for thought as I thought I presented with classic CH symptoms and the drugs I was prescribed worked straight away, but your information backed up the warning that both Mike NZ and CH BRAIN gave me about mis diagnosis (can't thank them enough).
I am only being treated by my GP, who although well meaning is by no means an expert in the area of CH's. The clincher was his reluctance to pursue O2 on my behalf despite all the evidence. There are a few medical issues in my past that are definitely worth pursuing. I'll take all the good advice given to me and find a good specialist, I may still end up with a diagnosis of CH but at least I will be sure. Thank you to everyone on this site who has helped me and let the journey continue ! Alan |
Title: Re: Cluster-LIKE headache Post by Mike NZ on Mar 6th, 2014 at 7:40pm
Don't rule out having more than one headache type either, which could account for the CH set of symptoms plus the response to indomethcin. This is yet another reason to see a headache specialist.
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Title: Re: Cluster-LIKE headache Post by Hoppy on Mar 6th, 2014 at 9:56pm
Mike wrote,
Don't rule out having more than one headache type either, which could account for the CH set of symptoms plus the response to indomethcin. This is yet another reason to see a headache special. Indomethcin stated for CH's but not the norm when treating CH's. Indomethacin is a potent drug with many serious side effects and should not be considered an analgesic for minor aches and pains or fever. The medication is better described as an anti-inflammatory, rather than an analgesic. Indomethacin can also affect warfarin and subsequently raise INR. Hoppy. |
Title: Re: Cluster-LIKE headache Post by shortstraw on Mar 7th, 2014 at 5:46am
I was directed by my GP on the initial consult to take Prenisone 75mg/day and Indomethican 75mg/day. After tapering down Pred over 2 weeks and cold turkey on the Indo after 1 week, was put on Verapamil 180mg/day. It worked a treat although I did suffer in the middle as the taper wasn't timed right with the verapamil. I also had a week of continuous shadows (very unpleasant). I wish I never took the Indomethican and started on the Verapamil as it seems to have muddied the waters for me. Was it the Prednisone or the Indo that did the job ? i know that Pred is very effective as a first step but generally Indo is not effective for CH's. If it was the Indo then it's very possible I could be looking at something else. Probably the lesson learnt here is don't see a GP when you need specialist treatment. Will definitely remedy that situation as soon as possible.
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Title: Re: Cluster-LIKE headache Post by Hoppy on Mar 7th, 2014 at 3:30pm
Your GP was on the right track but in a mixed up way. The
normal method is Verapamil 360mg/day with a Prednisione taper dose 7-10 days so the Verapamil can kick in. When you see a neuro ask about getting oxygen and Imigran auto injectors just to be on the safe side as an abortive. Hoppy. |
Title: Re: Cluster-LIKE headache Post by shortstraw on Mar 7th, 2014 at 4:45pm
Sorry I forgot to mention he gave me Maxalt as an abortive. When I go back I will ask him why he chose that. Rizatriptan vs Sumatriptan any thoughts ?
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Title: Re: Cluster-LIKE headache Post by Hoppy on Mar 7th, 2014 at 5:39pm
What is Maxalt?
Maxalt (rizatriptan) is a headache medicine that narrows the blood vessels around the brain. Rizatriptan also reduces substances in the body that can trigger headache pain, nausea, sensitivity to light and sound, and other migraine symptoms. Maxalt is used to treat migraine headaches. Maxalt will only treat a headache that has already begun. It will not prevent headaches or reduce the number of attacks. Maxalt should not be used to treat a common tension headache, a headache that causes loss of movement on one side of your body, or any headache that seems to be different from your usual migraine headaches. Use this medication only if your condition has been confirmed by a doctor as migraine headaches. Maxalt may also be used for purposes not listed in this medication guide. Important information You should not take Maxalt if you are allergic to rizatriptan, if you have any history of heart disease, or if you have coronary heart disease, angina, blood circulation problems, lack of blood supply to the heart, uncontrolled high blood pressure, ischemic bowel disease, a history of a heart attack or stroke, or if your headache seems to be different from your usual migraine headaches. Do not take Maxalt within 24 hours before or after using another migraine headache medicine, including almotriptan (Axert), eletriptan (Relpax), frovatriptan (Frova), naratriptan (Amerge), sumatriptan (Imitrex, Treximet), zolmitriptan (Zomig), or ergot medicine such as ergotamine (Ergomar, Cafergot, Migergot), dihydroergotamine (D.H.E. 45, Migranal), or methylergonovine (Methergine). Do not use Maxalt if you have taken a monoamine oxidase inhibitor (MAOI) such as furazolidone (Furoxone), isocarboxazid (Marplan), phenelzine (Nardil), rasagiline (Azilect), selegiline (Eldepryl, Emsam, Zelapar), or tranylcypromine (Parnate) in the past 14 days. Before taking Maxalt, tell your doctor if you have liver or kidney disease, high blood pressure, a heart rhythm disorder, or coronary heart disease (or risk factors such as diabetes, menopause, smoking, being overweight, having high cholesterol, having a family history of coronary artery disease, being older than 40 and a man, or being a woman who has had a hysterectomy). Also tell your doctor if you are also taking an antidepressant such as citalopram (Celexa), duloxetine (Cymbalta), escitalopram (Lexapro), fluoxetine (Prozac, Sarafem, Symbyax), fluvoxamine (Luvox), paroxetine (Paxil, Pexeva), sertraline (Zoloft), trazodone (Desyrel, Oleptro), venlafaxine (Effexor), or vilazodone (Viibryd). Maxalt will only treat a headache that has already begun. It will not prevent headaches or reduce the number of attacks. After taking a Maxalt tablet, you must wait two (2) hours before taking a second tablet. Do not take more than 30 mg of rizatriptan in 24 hours. |
Title: Re: Cluster-LIKE headache Post by Hoppy on Mar 7th, 2014 at 6:35pm
Imitrex is known as Imigran in Australia, New Zealand, and the UK. Maxalt is used for migraine headaches where as
Imigran is for both migraine and CH's. Hoppy. |
Title: Re: Cluster-LIKE headache Post by shortstraw on Mar 7th, 2014 at 9:23pm
I'm clear on all the warnings listed but you are saying that Maxalt is ineffective for aborting clusters ? and why would he have suggested it having diagnosed me with Clusters not migraines (inexperience ?). He mentioned sumatriptan during the consult but then went with Maxalt. Just a bit confused
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Title: Re: Cluster-LIKE headache Post by Hoppy on Mar 7th, 2014 at 10:14pm
You will need to ask your doctor this. All i know is Maxalt
are primarily used for Migraines. Hoppy. |
Title: Re: Cluster-LIKE headache Post by shortstraw on Mar 7th, 2014 at 10:28pm
Thanks for all the info. I will pursue it with him as from most of my reading here, there seems to be no set rules for treatment. What works for one may not work for another and vice versa.
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Title: Re: Cluster-LIKE headache Post by Mike NZ on Mar 7th, 2014 at 11:42pm shortstraw wrote on Mar 7th, 2014 at 9:23pm:
Maxalt can kill a CH as I've used them previously to kill mine before I got oxygen. However since it is taken orally it takes about 20 minutes or so to take effect, which is a long, long time when you're in the middle of a CH. In contrast, injectable imitrex (imigran / sumatriptan) takes 5 minutes or less, just like oxygen can do when used at a high flow rate with a non-rebreather mask. If your doctor is most experienced with dealing with migraine, which is more than likely, he will be used to using it as a way to kill off migraines which it does pretty well. I've used it to kill lots of mine as it is easy to take and you don't need a drink with it. It still takes about 20 minutes to take effect which isn't too bad with a migraine, there is just a small issue in that you can't use it when using propranolol as a preventive which is what I use. So it is an option if nothing else is available, but I'd go with oxygen / injectable imitrex as a first choice. |
Title: Re: Cluster-LIKE headache Post by Hoppy on Mar 7th, 2014 at 11:46pm
Yes thats what we have come to learn when you suffer
with CH's. With a lot of folk it's just a matter of what works best for you. Like you said we are all different. Hoppy. |
Title: Re: Cluster-LIKE headache Post by shortstraw on Mar 8th, 2014 at 2:03am
Thanks Mike NZ and Hoppy. I can see how things can easily get complicated but at least I'm on the right road, just maybe not in the correct lane. Just another reason to track down that specialist !
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Title: Re: Cluster-LIKE headache Post by Bob Johnson on Apr 6th, 2014 at 1:08pm
PLEASE! DON'T WASTE YOUR TIME POSTING COMMENTS, QUESTIONS, ETC. HERE.
NOTICE A LOW VOLUME OF MESSAGES HERE COMPARED TO THE MAIN SECTIONS (FOLLOWING) ABOUT MEDS/TREATMENT/ AND SO ON. YOUR POSTS WILL RECEIVE THE LEAST AMOUNT OF EXPOSURE, THEREFORE, LIKELIHOOD OF A HELPFUL REPLY, IF YOU POST HERE. Bob Johnson |
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