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Topic: misdiagnosed as migraines (Read 809 times) |
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mrnice
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hey there...
i'm not really confident about being a cluster sufferer so bear with me if my post sounds like im suffering from migraines...
I dont know where to start but I guess ill just say i'm 21... been suffering from these clusters for at least 4 years. I believe that they have only recently become chronic. I have been seeing a neurologist over the last 8 months and had been given Relpax and Amitriptyline. The amitriptyline made my headaches worse...
I had had the idea that I was suffering from clusters but the idea was quickly dismissed by any health care professional I offered it to. Based on what I was describing to my neurologist she believed I was suffering from migraines. However, after suffering chronically for I'm not sure how long anymore, my life is in ruins and I'm positive that I don't suffer from migraines. I keep sitting here trying to list off my symptoms to try to be convincing that I suffer from clusters but I cant seem to word it. I guess i'll just put it this way, i want to die everytime a headache hits, I pace back and forth slamming my head with my fists, dent my walls, smash my things...its getting quite ugly..my meds dont work in time because they are Relpax and need to dissolve into my bloodstream. I've just entered a new cluster cycle 2 days ago after a 1 day remission. Today it woke me from my sleep. Tomorrow I imagine will be even worse. This pain is always in my life because when i'm not in pain i'm terrified that it will return which it eventually always does. I need help coping in a serious way. I know oxygen is supposed to help but I don't have access to a neurologist for 3 more weeks and really need to make it until then. Any help is greatly appreciated.
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mrnice
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Re: misdiagnosed as migraines
« Reply #1 on: May 13th, 2006, 9:32pm » |
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i've been reading and i have to say this site is very overwhelming compared to OUCH...i'm sorry if I ask questions that i'm sure have been answered in other threads.. I may be a little angry these next few weeks as your my new forum.. i used to frequent ache but didnt find that I was in the company of many people with the same pain...Its really hard to read about all your great experiences with oxygen but having to wait at least 3 weeks for me to get a tank. Does going to a firehall during an attack really work? If they see the tears in my eyes will they hook me up and pump me full of it? I'm in Canada.. and I wouldnt want to go start a commotion at the firestation.. im not fun to be around when i have a cluster.
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Richr8
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Re: misdiagnosed as migraines
« Reply #2 on: May 13th, 2006, 9:44pm » |
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If you do go to the fireshouse, take the info from here:
http://www.brightok.net/~mnjday/chtherapy.pdf
and here:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
It's also possible to get the O2 commercially through a weld shop. Just do not tell them you are breathing the O2. Tell them it's for welding uses/
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Kirk
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Re: misdiagnosed as migraines
« Reply #3 on: May 14th, 2006, 2:57am » |
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I found that I could get O2 at the local ER also. They were more than happy to give it to me especially when they found out I wasn't after painkillers. About the 2nd time I showed up begging for O2 and Imitrex Statdose injection and not narcotics. They no longer thought I was some sort of junky and were pretty helpfull.
I'm in Oregon so your Milage might differ. Just my 
Good luck and stay in touch.
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chewy
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Re: misdiagnosed as migraines
« Reply #4 on: May 14th, 2006, 9:17am » |
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Quote:| suffering chronically for I'm not sure how long anymore |
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In order to be classified chronic you will need to know how long.
Chronic is 1 full year with less than 30 consecutive pain free days, with or without meds.
Judging by your pain response it sure sounds like clusters. Dump this current neuro and find one who is cluster educated.
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mrnice
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Re: misdiagnosed as migraines
« Reply #5 on: May 14th, 2006, 11:08am » |
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Thanks for the info on oxygen...i may go pretend to be a welder..sounds like a good idea.
In terms of a different neurologist.. i'm originally from Toronto but now out in London Ontario. If anyone knows a neurologist in London that is supposed to worth it i'd be more than happy to give him/her a shot.
In terms of how long they have been affecting me...
I believe that while i was in highschool, these clusters first started. Only it was episodically and so I believe that when the went away I did well to just forget about them. I thought the pain i was dealing with was just headache pain...albeit worsened by the fact that I wasn't very healthy in highschool (ate a lot of fast food and didnt exercise a heck of a lot and i'm a daily cannabis smoker)...the last 3 years of university have been anything but easy. I think the clusters werent too bad in first year but still quite frequent.. however my frequency has certainly gone up in the last year if not two years. It certainly is with me everyday and hasnt lessened its grip unless only for a day or two over the last year. I was recently on Effexor XR for anxiety and depression for two years and when I got off I cant help but feel my headaches got worse...
In terms of oxygen in the near future i hope i get lucky and can deal with the attacks with my own strength... I don't readily have access to a car and to be honest I feel uncomfortable going to the hospital and asking for oxygen.. does the hospital staff know that it has to be administered immediately?? Will I still have to sit there in the waiting room with guys with broken arms? I'll have to take a cab there and back as I have no car.
I have been adhering to the Buccholz diet which is a diet that has had great success for people that suffer from migraines... I'm mainly staying away from caffeine, choclate, MSG, aged cheeses, fresh bread (less than one day old) and some other goodies.. anyway Its been very hard to give up caffeine.. especially as I used to find great relief from the caffeine and my headaches.. but the Dr in the book has a great explanation of why caffeine helps in the short term but then can make things much worse in the long term...I only ask because in the short amount of reading i've done i've read a bunch of people drinking lots of caffeine and up until yesterday thought caffeine and headaches is just a big no no.. almost like my cigarettes which im trying to get off of... anyone know if marijuana is speculated to play a hand in clusters?
thanks
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Redd
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Re: misdiagnosed as migraines
« Reply #6 on: May 14th, 2006, 11:17am » |
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Quote:| and i'm a daily cannabis smoker |
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For most this is known trigger......(so is alcohol for the vast majority)
Caffine is a vaso-constrictor mild, but effective for aborting the less intense attacks, and chasing shadows. Niccotine is also a vaso-constrictor. Both work in a mild way akin to the triptans.
Might try giving up the weed, and seeking a good cluster educated neuro.
JMHO
edit to add: Resource for Doctors in Canada
http://www.headache-help.org/find_ha_dr.html
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| « Last Edit: May 14th, 2006, 11:26am by Redd » |
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mrnice
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Re: misdiagnosed as migraines
« Reply #7 on: May 14th, 2006, 11:31am » |
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you've broken my heart..
is there any study that I can try to convince myself that my cannabis makes things worse...its really helped me get through periods where i don't have clusters but dont have a life either so instead of sitting around worrying about my next cluster.. my smoke would take my mind off it altogether
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Jody
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Re: misdiagnosed as migraines
« Reply #8 on: May 14th, 2006, 11:54am » |
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Hi, I hope you are finding some usefull info here. Pegg has been helping me alot, for the longest time I went through miss diagnosis and tried everything they said would work. Well she has helped me alot and I have been relitivley pain free for a while now. Still get hit some but nowhere like it used to be. There are things that will make it worse for me it seems to be certain kinds and types of alcohol....the other day I had a couple of beers after work with a coworker and that nite I really regretted it. Sorry to say but when I did smoke weed or take take the occasional recreational drug...well it was fair to say I set myself up for a round of headaches. Hang in there there is alot of usefull info here and very nice people and pay asttention to when and what you do before and after a headache. keep a log if need be and check out the information on meds. Best wishes ...PF...Jody
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Jonny
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Re: misdiagnosed as migraines
« Reply #9 on: May 14th, 2006, 12:39pm » |
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on May 14th, 2006, 11:54am, Jody wrote:| Hang in there there is alot of usefull info here and very nice people |
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You forgot about me!....LMAO 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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LeLimey
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Re: misdiagnosed as migraines
« Reply #10 on: May 14th, 2006, 12:51pm » |
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There's a lot of VERY nice people.. and Jonny 
Happy now hairyface?! 
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mrnice
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Re: misdiagnosed as migraines
« Reply #11 on: May 14th, 2006, 1:00pm » |
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thanks...at least this site gives me something to do...just knowing that people do live with this is comforting.. even if you all have big fat oxygen tanks sitting next to you in case you get hit... I know i have to quit smoking and likely quit cannabis completely but so far ive noticed that if I don't smoke weed until the night time when my attacks have never been severe...i think i can sort of get away with it.. i used to smoke as soon as i woke up.. and i do think that that caused some clusters. I have tried to keep a headache journal but my headaches are so often and sometimes so debilitating that I find it almost impossible to keep an accurate journal.. at least its not worth the effort in my opinion
im not a big drinker so the no alcohol is really quite easy for me to do...i dont think i'll be able to completely quit cannabis anytime soon though.
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Linda_Howell
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Re: misdiagnosed as migraines
« Reply #12 on: May 14th, 2006, 1:08pm » |
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Quote:Jody wrote: Hang in there there is alot of usefull info here and very nice people
You forgot about me!....LMAO
Posted by: LeLimey Posted on: Today at 9:51am
There's a lot of VERY nice people.. and Jonny
Happy now hairyface?!
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Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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chewy
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Re: misdiagnosed as migraines
« Reply #13 on: May 14th, 2006, 1:19pm » |
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Quote:| is there any study that I can try to convince myself that my cannabis makes things worse.. |
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Sure is. Study the board archives.
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Jonny
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Re: misdiagnosed as migraines
« Reply #14 on: May 14th, 2006, 1:57pm » |
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on May 14th, 2006, 12:51pm, LeLimey wrote:There's a lot of VERY nice people.. and Jonny
Happy now hairyface?! |
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It seems that lots of folks think this way.
on May 13th, 2006, 11:13am, Racer1_NC wrote:Friendly people.....and Jonny....
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LMAO
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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alleyoop
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Re: misdiagnosed as migraines
« Reply #15 on: May 14th, 2006, 2:06pm » |
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[quote author=Redd715 link=board=knowya;num=1147568730;start=0#6 date=05/14/06 at 11:17:55]
For most this is known trigger......(so is alcohol for the vast majority)
Sorry, but I beg to differ. For the majority, I have always understood that weed has little or no effect on clusters - either positive or negative. I know that has been the case for me, although I rarely partake.
Alcohol is a different story. It is a known trigger for the vast majority of CH sufferers, except for a few chronics. As a dignosed primary chronic (chronic from day 1) - although I used to get away with drinking alcohol, I no longer drink at all. I can seldom get away with drinking a single beer without triggering a hit now.
Speaking of illicit drugs though, shrooms are one drug (along with LSA & LSD) that are bringing relief to many clusterheads - both as an abortive, but more importantly as a preventative. These drugs seem to be especially effective for episodics. For this hard-to-treat chronic, although certainly no panacea, it has been a God-send and given me many pain free days over the last couple of years.
.........alley
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Jonny
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Re: misdiagnosed as migraines
« Reply #16 on: May 14th, 2006, 2:26pm » |
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on May 14th, 2006, 2:06pm, alleyoop wrote:| I no longer drink at all. I can seldom get away with drinking a single beer without triggering a hit now. |
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What is wrong with this sentence?....Anyone?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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alleyoop
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Re: misdiagnosed as migraines
« Reply #17 on: May 14th, 2006, 2:32pm » |
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on May 14th, 2006, 2:26pm, Jonny wrote:
What is wrong with this sentence?....Anyone?
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Sorry Jonny. Let me rephrase.
I very rarely drink anymore - maybe once or twice a year for some special occasion, I will try - only I can't get away with it anymore.
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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mrnice
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Re: misdiagnosed as migraines
« Reply #18 on: May 14th, 2006, 6:05pm » |
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alleyoop thanks for your opinion. Thank goodness to have someone on the other side you dont know what you mean to me
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alleyoop
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Re: misdiagnosed as migraines
« Reply #19 on: May 14th, 2006, 6:39pm » |
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on May 14th, 2006, 6:05pm, mrnice wrote:| alleyoop thanks for your opinion. Thank goodness to have someone on the other side you dont know what you mean to me |
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You're welcome. Just calling them as I see them.
.........alley
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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Redd
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Re: misdiagnosed as migraines
« Reply #20 on: May 14th, 2006, 6:59pm » |
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Ally,
You know I am a strong proponant of clusterbusters, and am an active partisipant in this therapy. I too am a hard to treat chronic, but Pot?
mrnice,
Please read the post in the Medications treatment and therapies section. Title is POT? It's on page two, or use the search feature, or both.
Sure, there are going to be a few people who don't get triggered by pot, but the consensus is most (not all, I wrote most) people who have tied are triggered.
I also can drink Jim Beam, and I can drink wine. I used to be able to drink micro-brew beers, the ones with lower hops content. However, as of about a year ago, any beer of any kind became a trigger.
The beast morphs and mutates. Meds that work one cycle don't the next, or quit working altogether. What was a trigger last year may not trigger this year, and what used to may not the next year.
Nature of the beast.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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mrnice
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Re: misdiagnosed as migraines
« Reply #21 on: May 14th, 2006, 7:08pm » |
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I find it really hard to post on this forum.. i just really struggle to get my words out and feel like my post is under such scrutiny.
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Redd
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Re: misdiagnosed as migraines
« Reply #22 on: May 14th, 2006, 7:23pm » |
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I'm sorry you feel that way, that is not the intent here at all. We are all here to not only support, but to help and assist by answering questions.
You questioned about Pot, and you are getting answers. I'm sorry you don't like some of those answers. ( Meaning mine and Jody's)
If, after reading and getting more than just mine, Jody's and Allyoop's opinions you choose to leave this site, thats up to you, but we are here to help each other. Thats all I was trying to do.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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mrnice
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Re: misdiagnosed as migraines
« Reply #23 on: May 14th, 2006, 7:38pm » |
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I just get very anxious.. i cant help feeling the way I do.. I just feel that many of you take your experiences and turn them into what you believe to be facts. I think this monster is different in all of us...whats even more important to not forget is that we are not all smoking the same plant. There are few who to take the care to grow it properly and its this cannabis that has become such an integral part of my life. I'm fairly certain the quality of smoke that was inhaled by many of you who had a cluster afterwards was sub par. Also with all the different strains of marijuana out there who knows if there are certain types more effective than others at treating different ailments.
I think what i'm trying to say here is that I am troubled when people say that pot gave them clusters but at the same time I wouldnt have nearly as much of an issue if there was some sort of support to your claim other than just personal experience... if everyone claimed their personal experiences as fact we'd be in chaos.
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Jody
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Re: misdiagnosed as migraines
« Reply #24 on: May 14th, 2006, 8:05pm » |
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I was not trying to slam you or put you or what you say under a microscope, if you research this site you will find alot of the answers you are looking for. The things people tell you are from personal experiances and they wouldn't offer their opinoins if they didn't have a good reason too. I have dug around this site and alot of the sites Pegg has refered me to and believe me I have denied it to the end but have come to deal with the fact of what I have to deal with. We are by no means bashing you or telling you to quit smoking pot do what you want....it is your choice but alot of the answers are here and the people...even jonny... have alot to offer through their experiance and different meds and treatments. ask as many questions as needed.... I have and it has always been met by supportive people. You have found a great site just keep an open mind. Best wishes.. PF.. I hope...Jody
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