|
||
|
Title: Can you,will you HELP if I shout FIRE! Post by ifonly on May 5th, 2004, 5:37pm [b][/b] My First Stage: The Beast has been with me now for about two years. The First year or so was pain just like a bad headache,it would wake me up for a few hrs each and every evening. My Second Stage: This is when the beast started to show its teeth! Up until this stage I was coping on my own. Buying normal pain killers,and sleeping when I could. When the beast bit me hard I was reduced to tears. The Pain in the back of my eyes,right hand upper and lower jaws, running into my right hand ear, and finishing off down my neck was such a shock! Never before in my life had I beeen reduced to panic through pain. All I wanted to do was run away from the pain, but there was no where to go, no where to run! The Doctor came to my home,and informed me that I had "Cluster Headaches". The Appointment was made with a Neurosurgeon immedately. Pain killers were given"ZYDOL CAPSULES" OR "TRAMADOL HYDROCHLORIDE" In addition, AMITRIPTYLINE HYDROCHLORIDE AT 25 MG was given for the evenings. Have you any experience using these drugs? Have they helped you? Have they hurt you? Please let me know, as I also have MS (Multiple Sclerosis)..... so you could say that I have been hit by two CHRONIC monsters at the same time. I need to keep my head and heart clear so that I can face all that life wants to give me! so if you can help then please let me know your experience regarding these drugs. Many Blessings to one and all from Mike N/B over the past week I have found out somthing VERY IMPORTANT. TRAMADOL is a OPIOD ANALGESIC which is related to OPIUM,the extract of poppy seeds. TRAMADOL blocks the transmission of pain signals. because they act directly on the parts of the brain where pain is perceived OPIOIDS are the STRONGEST ANALGESICS and are therefore used to treat the pain arising from SURGERY, CANCER, AND SERIOUS INJURY. its alsoused for relieving servere pain during TERMINAL ILLNESS. i am still investigating more on this subject and i will post in the normal manner. stay strong bye again from mike |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by Karla on May 5th, 2004, 5:54pm I have tried the amitriptaline and it did nothing for me. I haven't tried the other medicine. Have you tried oxygen or verapamil? Those work for most people. |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by Superpain on May 5th, 2004, 5:57pm In my experience narcotic painkillers cause rebound headaches, and do nothing for ch. Get your neuro to set you up with Oxygen with 12-15 lpm flow rate. It does wonders! Imitrex injections are also wonderful when battling the beast. |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by Allerum30 on May 5th, 2004, 7:00pm Tramadol did nothing for me. I seem to be having some level of success with Lorecet 650mg at the onset of a headache. I usually get to about a 3on the kip, and then comes that wonderful 'euphoric' feeling from the narcotic. I also think that I'm coming down the end of this cycle. so that might also be the reason that the drugs are working so well. Best of luck and I wish you PFDAN. Scott |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by pubgirl on May 5th, 2004, 7:26pm Mike Superpain is right. I also think it is inadvisable that Allerum/Scott suggests narcotics to new people who haven't even tried the more standard recommended treatments for CH. Even more importantly for you, there may be drug interactions with things you are taking for your MS which need to be considered. You sound like life has dealt you a bit of bum hand giving you MS and CH as well. :( Have you seen a neurologist yet to get the CH diagnosis confirmed? If not I would push your GP to speed up the appointment as the drugs they are giving you would not normally be the first choice for CH. Painkillers mostly do diddly squat for CH. Also if you haven't already, log on to the OUCh UK site at www.ouch-uk.org for lots of good information. It is undergoing some maintenance work over the next couple of days, but there will still be access to the information, and also to the Helpline telephone number which you can ring to talk to an experienced Ch sufferer, just to whinge or to get good advice Keep us posted how you get on Wendy |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by purpleydog on May 5th, 2004, 7:55pm I agree with pubgirl. Narcotics don't work for most people with CH. And just as an aside to Allerum30, if you are popping 650 mg of lorecet and you're only at a kip 3, you probably need to take another look at how bad your headaches really are, and are you really looking for the "euphoric rush"? Anyway, ifonly, oxygen works, verapimil is a preventative, the doc probably gave you the amytriptyline to help you sleep, 25mg is the lowest dose, also it helps with pain. I'm not familiar with zydol, the other is a narcotic pain med without the "rush". There are lots of thing to try and if you search this site or go to the med board and keep reading, you will find a wealth of info on medicne that you can make a list and give to your doctor. Good luck. And by the way, your doctor makes housecalls?? WOW take care purpleydog |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by HypnoticFreddy on May 5th, 2004, 7:57pm Hi and welcome. First off it does indeed sound like you have CHs. Sorry to hear that. And MS? Wow your fighting TOUGH battles. Really a Neuro should prescribe one of about 5 drugs (as preventatives or transitionals into when a preventative MIGHT work). And clusterheads...correct me if I am wrong on these meds. There are many common ones. Also abortives which I mention below and others already have. See people who are regulars on this website are so experienced in the whole game of CH treatment. The countless doctors, the MRIs and Cat Scans that show you have a normal brain (Ha! Can't quite see my craziness) :-/ IF IT IS CH diagnosis. Did your doctor say you have CHs? Did he/she say you are going to treated for CHs? If he/she said yes, that is a good start. If they prescribes some of the meds like Tramadol and Amitriptyline(although I was tried on that once). Amitriptylene is a tricyclic anit-depressant primarily, but it also is known to help on vasoconstricting blood vessels, which is helpful for many types of headaches. Opens up blood vessels. For many TYPES of headaches, like tension headaches, Amitriptyline is a very good choice. The drugs or preventatives that should be common knowledge in the Neuro world for treating CHs are Verapamil, Depakote, Lithium, DHE, other ergotamines, and some do Lithium/Verapamil combo. Some take 3 or more meds to try to fend off this BEAST. Topamax was prescribed for me recently and I had amazing success. Too bad for many the s/e's are VERY difficult. I am sure I am missing a few. Perhaps some clusterheads can share. Neurologists should know this, but unfortunately, many Neuros don't. And you definitely should be seeing a Neuro as the primary treater. You mentioned a Neurosurgeon, and that sounds good, but if he/she is prescribing those meds, I am suspicious. Some Neuros really do specialize in headache treatment. Either the doctor does not believe you have CHs or is treating you improperly. My first visit with a Neuro in '97. She listend to me talk about what had been happening (4 months strong) and after 5 min, " Oh.....you have cluster headaches." I was relieved. I actually thought I was dying, as many of us felt. I was just a little relieved to find out that this has a name and there are strategies to help. I was put on Verapamil and given an assortment of Imitrex. Imitrex pills, nasal sprays, and the BEST (for me and many others) Imitrex injections. The Imitrex injection will COMPLETELY abort a Ch in 5-10 min max. The Imitrex is an abortive. Oxygen is an abortive too. Read the links. Read past posts on this message board. Imitrex costs $75/shot, and the pills and nasal version ain't cheap. Due to Imitrex POTENTIALLY contributing to certain heart conditions, it is only recommended you take no more than 2 shots, pills, etc. in a 24 hr period. This is what many of my Neuros have said to ME. Although I have read some CHRONICS who use more than 2 per day. It is a powerful medicine. This is why oxygen, for reasons not entirely understood is THE best alternative. Another unforunate thing about CH treatment is s/e's or side-effects. A lot of the medicines are indeed powerful. You will have to accept becoming a human guinea pig. It often takes time and trying diff meds to help. Oxygen is relatively cheap and you can actually get a prescription for it just like Tramadol. Again I advise you to read a lot. Read the links on the left side of the page, and also go to the OUCH website (link). READ READ and READ. I only mean well. Headaches of anykind suck. But CHs are like something from another planet. I have the pleasure of getting 2-3 migraines per year. I know EXACTLY how they feel (at least for me). Some have said the pain of a CH is 100X as painful of a migraine. Some have said a CH attack is more painful than limb amputation. I don't know. I havent had THAT happen thank god!! All I know is this Neorological disorder is so unusual and downright insane. I am episodic. I think like 70 something percent of us are episodic. Some, like you have described are chronic. They don't go away. I have found that CHs CAN be manageable. You can LIVE your life and not think about suiced 2-6 times per day. So I advise to keep reading. Also, find another doctor. Those drugs they prescribed are not usually first-line defense drugs in CH treatment. Again, did he DIAGNOSE you with CHs? Tramadol is a synthetic analgesic. It is a painkiller and I believes acts on opiate recptors in the brain. So I believe it similar to using a narcotic, which as mentioned is not effective for MOST of us. I wish you good luck. -Scott |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by pubgirl on May 5th, 2004, 8:03pm Scott (Freddy Scott that is) Don't want to piss you off, but we don't pay for our drugs here. Any prescription costs us only £6.40 whatever is on that prescription. Some people even get their prescriptions free (students, pregnant women etc). The downside of this though is that GP's guard their drug budgets like lions and have a horrible habit of sending CH sufferers away with triptan pills (which as we all know are a poor treatment) because they are cheap. I'll go now before all the people in the USA who can't afford treatment start throwing stones at me) :-[ Wendy |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by HypnoticFreddy on May 5th, 2004, 8:08pm Wendy, No problem. That is why I asked in my post for some feedback to questions I asked to us bonafied certified CH sufferrers. Didn't know that you get those medicine benefits in Europe. Too bad our gov't doesnt support universal health care and devote some more energy on these types of issues for CH sufferrers and countless others who suffer from other pain and illnesses. It is a shame. -Scott |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by floridian on May 5th, 2004, 9:01pm Mike, magnesium and melatonin have both been shown to help some of us ... not everyone, but they are relatively safe, innexpensive over the counter meds in many countries. Magnesium - take 100 to 200 percent of the RDA, divided into 3 doses with meals. May take a week or two to help, although it may take less time. Melatonin - some people benefit from 1-3 milligrams per night, others take 9 mg or more. Take it about an hour before bedtime, and keep a regular schedule. I prefer time released melatonin, or a preparation where half is quick release, half is time release. Ditto what others said about oxygen - it provides quick pain relief for many clusterheads. For MS, look into bromelain or phlogenzym - they are enzyme preparations that reduce autoimmune diseases. Bromelain is from pineapple. Also, consider fish oil or flax oil. Quote:
Well, Wendy, I am pissed off. So I will point out that you do pay, but indirectly through taxes. Just heard a discussion on the radio ... the US spends double what other advanced western countries spend on health care (per person), but in most objective measures we arent any better off. High admin costs, high drug costs. People in pain go without treatment. More people should be pissed off. |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by Prense on May 5th, 2004, 9:10pm One thing to consider is a symptom of MS is sever HAs. If you were not diagnosed by a neuro familiar with your med history, I'd discuss it with the neuro that you see for MS. Good luck! Chris |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by ifonly on May 6th, 2004, 6:45am I have been very inspired by all your kind words and helpfull comments. May I send you all my greatful thanks and sincere words of apreciation for all the detail and information which I have recieved so far from all the responces. In order to confirm the situation, may I say that the servere pain lasts for about one or two hrs each attack. The Pain comes about the same time each day. Two pain attacks each day are about normal. When I take the ZYDOL TRAMADOL HYDROCHIORIDE during the attacks of pain never has the pain gone. To be fair it may reduce a little,but on the other hand it also may not as I have no way of being able to make a judgement. All I can say is that the pain stays with me for a few hrs each attack. Please keep on posting your views and points of view as I think that when you do you are helping more than you know. Many Blessings Mike |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by miapet on May 6th, 2004, 2:23pm Side note on Depakote: Depakote works on the frontal lobe of the brain . . .if my understanding of CH is right, and it's a malformed hypothalmus . . .last I knew, the hypothalmus, and the hypothalmus region, are not in the frontal lobe . . .so, Depakote may not be the best line of defense in fighting the beast. *positive light and energy* miapet |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by Giovanni on May 6th, 2004, 5:38pm Ditto on Floridian's melatonin and other supplements. I have personally benefited from melatonin @9mg. Imitrex injections will abort my headaches within 5 minutes. I have been fortunate this year not having a cycle by using the alternative treatment. Best of luck to you, John |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by thomas on May 6th, 2004, 5:52pm Just a note, when us yanks talk about imitrex, they call it imigran over there. |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by Lizzie2 on May 6th, 2004, 6:16pm From a book that I just got that my neuro wrote, here is a list of the mainstream CH meds: For prevention: Short term: steroids, some form of ergotamine at night, greater occipital nerve block Long term: Verapamil, Lithium, Divalproex sodium (Depakote), Topiramate (Topamax), Melatonin Most effectively listed abortives: Oxygen, Imitrex (imigran) nasal or subcutaneous injection, Dihydroergotamine (DHE) intramuscular injection or IV I don't know how any of these drugs would effect your MS or MS treatment...but that's just something I came across in the last couple of days that is a reference list. I know other people use other things with success as well. Good luck! Lizzie |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by HypnoticFreddy on May 6th, 2004, 9:32pm Lizzie, That was a nice post thanks! -Scott |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by mynm156 on May 8th, 2004, 2:27am AMITRIPTYLINE did nothing for me and is a dangerous drug that does not like to play well with others. Be very careful with it and make sure that you consult with not only the Doctor if he makes a change but the Pharmacists also. MYNM156 |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by ifonly on May 8th, 2004, 5:06pm TRAMADOL (OPIOID ANALGESICS) having used the TRAMADOL now for the past few weeks I must say that I believe that it is giving me great relief from the pain of the beast!. A few days ago I stoped the TRAMADOL for 24 hrs in order to see what the results would be. The results were a return to the pain of the beast with all its hurtful hardships. The pain returned to all the places as outlined in the first posting. It apears that No immediate pain relief is given once in pain with the drugs either low or out of the system of the body. Once the TRAMADOL is back in the system of the body then I can report that the outcome is a pain free existence. I can report that it is working very well for me. On the other hand there is a set back in that a state of relaxation and euphoria slows down the pace of life. Nausea has not affected me in any way so far. I have also found out that TRAMADOL is an OPIOD ANALGESIC. the use of these powerful opiods are strictly controlled because the euphoria produced can lead to abuse and addiction. However when given under medical supervision to treat severe pain the risk of addition is negligable. I am very greatful that I have the use of this Drug, as I have experienced both life with the TRAMADOL and the pain and existance with out it. I know which I prefere. I have a lot of avenues to continue exploring and I will report back as soon as possible. Many thanks for all the input so far. Once again please if you have any experience in the areas as outlined with in all the postings then please make your comment. Thanks for your help mike |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by HypnoticFreddy on May 10th, 2004, 12:12am Mike, It is terrfic if indeed Tramadol works for you. Perhaps you are one of the lucky few who can be treated by such drugs and actually get relief. As far as most clusterheads, opiate or opiate-like drugs don't touch the pain. AT LEAST THEY DO NOT IN ME. I understand that you are battling MS, and CHs. Certainly sounds like a horrible combo of diseases. Especially MS. I wish you luck and hope you stay healthy. I still wonder if the CH diagonsis was correct. I mean it could be. Some people (just very few) benefit off Opiate or opiate-like drugs. Good luck! -Scott |
||
|
Title: Re: Can you,will you HELP if I shout FIRE! Post by UN_SOLVED on May 11th, 2004, 12:38am They haven't made a narcotic that helps me yet. Thank god for Imitrex Unsolved |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |