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Daily Chat >> General Posts >> Help Me!!!!!!!!! Im new... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1259535845 Message started by alittleconfused on Nov 29th, 2009 at 6:04pm |
Title: Help Me!!!!!!!!! Im new... Post by alittleconfused on Nov 29th, 2009 at 6:04pm
:o i am new to this whole thing. the site and this disease. i've had so many problems it feels like if it's not one thing it's another. i am not prepared to face this alone and my parents don't know how to help me. maybe someone else does? i'd appreciate it. thank you.
Andi |
Title: Re: Help Me!!!!!!!!! Im new... Post by Linda_Howell on Nov 29th, 2009 at 6:56pm
Hi Andi..
Are you male/female? What state do you live in? Not asking for last names or addresses...but the people here are all over the U.S. and I like to call the newcomers to welcome them.. as well as answer any questions they might have. When I came here over 11 years ago...I was so new and was so grateful for this site...We are family here now and you are one that family. Please just introduce yourself, tell us something about why you're here...OR below my post there is a "PM" click on it and I will be happy to talk to you one on one We are ALL here to help. Linda |
Title: Re: Help Me!!!!!!!!! Im new... Post by lorac on Nov 29th, 2009 at 6:57pm
Hi Andi
You came to the right place...welcome. Look around in here, and you will find answers to all your questions, AND we all know what your going through ... you are not alone. What kind of meds are you getting? Let us know your story. Stick around. And maybe get your parents to come here too...there is a great bunch of supporters here too. Lorac |
Title: Re: Help Me!!!!!!!!! Im new... Post by Guiseppi on Nov 30th, 2009 at 12:41am
Welcome Andi.........we don't diagnose here and we don't prescribe meds.....but you won't find a more complete knowledge base on CH anywhere in the world. Let us know what meds you're taking, how you were diagnosed, what has and hasn't worked, how often you're getting hit etc. We'll do our best to make suggestions to take back to your doc to help alleviate the pain.
The good news is you're not alone, hang in there. joe |
Title: Re: Help Me!!!!!!!!! Im new... Post by Charlie on Nov 30th, 2009 at 1:26am
Hi Andi and welcome to our little corner.
Everybody here knows what a horror CH is. The more you read and hopefully share with us the better you'll be at getting others to understand. Stick around and I hope you will tell us more. Charlie |
Title: Re: Help Me!!!!!!!!! Im new... Post by Jasmyn on Nov 30th, 2009 at 4:35am
Hi Andi
Best place this. Support is here, you do not have to do this alone. Hugs Jazz |
Title: Re: Help Me!!!!!!!!! Im new... Post by LeLimey on Nov 30th, 2009 at 5:35am
Andi as asufferer myself as well as the mother of a sufferer I can relate to both you and your parents experiences with this.
They sound like they need help learning how to support you with this and understanding how you feel and the condition itself. There is no better place than here for that! You say your therapist has said you sound like you have CH and that is a good start but it isn't a diagnosis honeybun. There are over 600 headache types with many overlapping symptoms and it will take a headache specialist neurologist to accurately both diagnose and medicate you given that you have other ongoing conditions too. The MOST essential thing and I can't stress this enough is that you have an MRI. With pain of this nature all avenues have to be explored as med's for one condition can be harmful in another. An MRI is essential in ruling out some other conditions and headache types where some typical cluster meds could be extremely dangerous. You are so welcome to be here! We will help and support you all the way to getting a diagnosis I promise and from there on in as well. I'd like to refer you to a particular friend of mine who I absolutely think the world of. Her name is Felicia and like you, she is 17. She doesn't have CH but she is the daughter of parents with CH and is a phenomenal supporter. She will understand everything and she'll help you on a peer level too. That's not to say the rest of us won't! We will!! ABSOLUTELY! It's just sometimes, it's easier to have someone in your age group. Hang in there, you've got all of us in your corner now too! Helen |
Title: Re: Help Me!!!!!!!!! Im new... Post by Felicia on Nov 30th, 2009 at 7:59am
Hey sorry I'm late to the party. Aren't I always though? Anywho, hey! As you can see I'm Felicia. I'm 17, live in NY and I been playing this game since I was 10. I've got two sufferers that I live with and then these guys who I call mine too. They're family. And hopefully you will be too.
I know CH is hard, even though I don't have it. I've had migrains since I was 7 though so I understand what it's like to have other people look at you like you're crazy. Hey it happens. This is the site you run to. No one here will think you're crazy (unless you really are). But to get to my point. I am the teenage welcome wagon (find my link in the newbie board). I'm here for all the cluster"kids" (I say that in quotes because there are no kids with clusters, they're old before their time) to b*tch, rant, cry, scream, question, and what ever else is needed to. I try to help all I can. PM, email, Facebook, cell, it's all there. I'm always around when you need some one to talk to. I don't post here a lot but I do keep an eye out. Any way, that's my deal and feel free to ask. But do me a favor and try to answer the questions people ask you here. They ARE trying to help. They know a lot more about meds and stuff like that than I do. I'm just the emotional support. Let them do their thing and you'll be just fine. Welcome to the family hun. Sorry you need us, glad you found us, and hope you're here to stay. ~Felicia. |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Dec 4th, 2009 at 7:08pm
im sorry it took me so long to get back to this place. i am a female. i don't have much time right now but i'll put down as much of my story as i can. i've had migraines for as long as i can remember. but they have gotten worse and worse. now i have them mostly everyday, several times a day. one time i was in so much pain it drove me to overdose on ibeprofin. i have a neuroligist appointment in like 3 weeks and for once i feel like im getting closer to some answers. :) this sight is very neat and im glad i've found it. so anyway i am open to questions and advice.
thank you, Andi |
Title: Re: Help Me!!!!!!!!! Im new... Post by Brew on Dec 4th, 2009 at 7:23pm
Andi,
Please understand that anyone here is going to be hesitant to give you cluster-specific advice if you don't have a diagnosis from a neurologist or headache specialist. One thing you can do without a diagnosis is slam a can of an energy drink (like Red Bull) at the first twinge. The drink should contain both caffeine (60-140mg) and taurine (1000mg). Drink it as fast as you can stand. This combnation seems to have the ability to knock out a good number of attacks if you catch them early. |
Title: Re: Help Me!!!!!!!!! Im new... Post by Jeannie on Dec 4th, 2009 at 10:57pm
Hi Andi,
Sorry for your pain. Try the energy drinks as Brew suggested. It helps me a great deal most of the time. Jeannie |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Dec 4th, 2009 at 11:43pm
thanks for that. i'll be sure to give that a try during the next attack... which is unfortunately on its way. :-[
|
Title: Re: Help Me!!!!!!!!! Im new... Post by Jeannie on Dec 4th, 2009 at 11:53pm
Try to drink it at the first sign of an attack. Drink it as fast as you can and see if it helps you any. If you don't mind me asking, how old are you?
Jeannie |
Title: Re: Help Me!!!!!!!!! Im new... Post by Charlie on Dec 5th, 2009 at 1:05pm
Andi:
One thing you can try is the following technique. I post this often for newcomers: Dr. Wright’s Circulatory Technique I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. This technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. As silly as it sounds, try to think of it as filling your hand with redirected blood flow. The important part is that it has to be done without interruption until it has some effect. Do not give up in frustration. It may not work on the first try. Sometimes it can work quicky but it almost always worked after a time. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of this method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck. Charlie |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Dec 6th, 2009 at 5:02am
thank you everyone for the great advice. it's nice having some help and support. also i am 17 for those who wanted to know. the creator of this site, and those who keep it running must be angels
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Title: Re: Help Me!!!!!!!!! Im new... Post by Callico on Dec 6th, 2009 at 10:03am
Might I also suggest you take the cluster quiz on the left. You called them migraines, but said they come multiple times a day. That sounds more like cluster than migraine, but it would be helpful to differentiate. However, as was said, we are quite reluctant to point to specifics before a diagnosis. If teh cluster quiz points to cluster I would read the oxygen info carefully and take the pertinent information with me to the Dr. Then if you are indeed diagnosed with cluster don't leave the office without a script for O2.
Jerry |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Dec 10th, 2009 at 5:51pm
I guess the reason i called them a migraine is because im hesitant to call them clusters at this point.
|
Title: Re: Help Me!!!!!!!!! Im new... Post by sandie99 on Dec 11th, 2009 at 9:16am
Andi,
Warm welcome to ch family. :) Don't be afraid to ask questions. We're here to help each other out. You'll find lots of information, lots of support and lots of people who know exactly what you're dealing with. Lots of PF days your way, Sanna |
Title: Re: Help Me!!!!!!!!! Im new... Post by angela.lambert on Dec 14th, 2009 at 1:14pm
Hello Andi-
I have a best friend named Andi. She is always there for me when I need help during my headache cycle. Did you make it to a doctor yet? We want to be sure you get some help for these headaches. I started my headaches when I was 14. My family blew them off as nothing big. As I got older, they got worse. More painful. I don't want to scare you, I just think you are on the right track to getting some medicine that will help ease the pain of your headaches. It wasn't until I was 27 when I heard of Cluster Headaches and was able to ease my pain. It was a lonely road to that point and until I found this forum. Be sure you don't have a more sinister problem, like a tumor or aneurysm up in that head of yours. And be sure that you do have Cluster Headaches. (I really hope you don't). Keep us posted on your progress. Were thinking of you. Angela |
Title: Re: Help Me!!!!!!!!! Im new... Post by Anchor Yanker on Dec 15th, 2009 at 5:17am
I'm new too, Andi. Seems like a supportive place with a lot of nice folks. I like it so far. Hope to see more of you. Be sure and let us know how the Neurology appointment went.
|
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Dec 15th, 2009 at 10:17am
My neuoroligist appointment is on the 28th of this month and i can't say that i'm not a little nervous, but i will most definitely keep you posted. i just can't seem to think everyone enough.
i guess I'll tell a little more about myself. i've been having these headaches since i was probably 10. At that time I was being placed into foster care. We all just figured they were due to stress. i remember i went to school every morning wanting to pull out all my hair. i had a hard time concentrating. i was a total recluse those days. keeping to myself. they've only gotten worse. when my parents finally decided to call the doctor, after my constint nagging, they mentioned my vegetarian lifestyle. my parents don't like me being vegetarian so they attribute any of my problems to that. so the doctor decided to diagnose me before even seeing or talking to me. He decided i must have a protein deficiency and threatened that if i didn't find a way to get more protein in me i'd have to go back to meat :( so because my mom just thinks im a hypo i never really tell her about my pain, choosing to deal with it on my own. then my therapist, the women's a genius, told me about cluster headaches. so this is a little insight as to what led me here -Andi :P |
Title: Help me I'm new Post by Jeannie on Dec 15th, 2009 at 11:04am
Andi,
I have gotten these headaches since I was ten too. I am a bit older than you now... LOL! I hope your appt goes well at the Neuro. Just go in with as much information possible about your pain. Mention everything. Be specific. It will help your doctor help you. Keep us posted! Jeannie |
Title: Re: Help Me!!!!!!!!! Im new... Post by angela.lambert on Dec 15th, 2009 at 12:59pm
Hello Andi-
That is tough. Getting off to that start would be pretty difficult. Sounds like your parents need to take all those years of blaming your vegetarian lifestyle and rethink/understand that it is something else. Wow, it is gonna be hard to recondition their thoughts. I think they need to go to the neuro with you, so they can hear it from an expert that it isn't protein deficiency. If your neuro says it's needed protein, please let all of us know here, because looks like your parents cured Cluster Headaches. Amazing! ;) Mucho props to your therapist! What a gal! Take care, and keep us posted! Angela |
Title: Re: Help Me!!!!!!!!! Im new... Post by Brew on Dec 15th, 2009 at 1:42pm Quote:
= path of least resistance. = they don't want to face the tougher truths. |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Dec 28th, 2009 at 12:21am
Tomorrow morning is my neuro appointment and i'm kind of scared. i'm having an awful week, and i woke up with a kink in my neck so i can't turn my head all the way to the right. so i'm quite irritable. lol. my mom today also frustrated me by calling me a drama queen. i can never tell her when i don't feel well or think something is wrong :-[ so this week is already off to a bad start! but i am relieved the appointment is here! i just wish i didn' t have to wake up so darn early. well i best be running along. i plan to go in prepared with a list of my pain.
peace and love Andi |
Title: Re: Help Me!!!!!!!!! Im new... Post by QnHeartMM on Dec 28th, 2009 at 8:56am
Be sure to take with you some information on the oxygen therapy from this site. And let us know how your appt goes Andi.
|
Title: Re: Help Me!!!!!!!!! Im new... Post by Jeannie on Dec 28th, 2009 at 9:11am
Let us know how it went.
Jeannie |
Title: Re: Help Me!!!!!!!!! Im new... Post by Felicia on Dec 28th, 2009 at 9:54am
Andi there's no need to be afraid of the nero. He doesn't bite and he's only there to help. I hope you have the best of luck and find out it isn't clusters you have. Something with a cure which be much nicer instead. Best of luck hun.
~Felicia. |
Title: Re: Help Me!!!!!!!!! Im new... Post by Iddy on Dec 28th, 2009 at 1:33pm
Thinking of you Andi :) :)
Looking forward to your news Iddy |
Title: Re: Help Me!!!!!!!!! Im new... Post by Charlie on Dec 29th, 2009 at 11:09am
I guess I'm late with this but don't worry about your neurologist appointment. They are about as boring as one can be. They aren't invasive at all and the tests are boring too.
Good luck and let us know how things went. Charlie |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Mar 31st, 2010 at 8:45pm
wow its been way to long. i guess i just got really upset after the appt. he didn't listen to me and didn't runtests. so he diagnosed with chronic migraines and sent me off with pills and instruactions to avoid screens and cafeine. which didn't make sense since i hardly watch tv or drink or eat caffeine. my parents didt want me on anymore meds so i didn't take them. there's been so much else going on we haven't scheduled a new appointment. well i guess this is the best summary i can give. thanks to all of you who were thiking of me
loves, andi |
Title: Re: Help Me!!!!!!!!! Im new... Post by Charlie on Mar 31st, 2010 at 9:09pm
Sorry you're having such a time. This guy isn't on your side if you have CH by the looks of it.
This disease does frustrate doctors but still...it would be nice if these guys would understand just what this horror can do. Migraine drugs don't do much for clusters, if anything at all. The others here can give you better info than I so don't go away without getting some help. Keep posting for awhile. You'll find help here and good luck. Charlie |
Title: Re: Help Me!!!!!!!!! Im new... Post by Linda_Howell on Mar 31st, 2010 at 10:16pm Quote:
um.....Andi? Is it at all possible for you to see another Doctor? I believe after reading this, that I have copied from your post up above...most people here would agree with me. You REALLY need to have a better doctor to treat you. Personally...this guy sounds like a moron to me and you deserve better treatment than this drivel. I hope you can see another Dr. soon. :-/ |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Apr 1st, 2010 at 3:31am
i wish that doctors were as nice as you guys have been to me. i cried after my appointment from the frustration. i really felt like he was just dismissing me as some mental case because im on psychiatric medication. it turns out that the medicine he prescribed was just another anti-depressent also used for severe migraines :/ well im hoping to see a new doctor but in all honesty i haven't had an attack in some time now. i don't know what that means. i get headaches but they are in no way the same. well i need all the help i can get from you guys. and thatnks
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Title: Re: Help Me!!!!!!!!! Im new... Post by Callico on Apr 1st, 2010 at 12:04pm alittleconfused wrote on Apr 1st, 2010 at 3:31am:
Andi, That is typical of clusters. They come and they go. They may stay away for a few months to a couple of years, but if they are clusters they WILL come back. Please try to get your parents to take a look at this site and at the OUCH site to get an idea of what you may be dealing with. You need a Dr that knows something about clusters, and that isn't just a pill pusher trying to get you out the door so he can take the next patient's money. Please hang around here and read as much as you can. There is a great deal of info you can use the next time the beast comes along, and come along he will. It is much better to be prepared and know what is going on than to try to play catch up while in such pain. Jerry |
Title: Re: Help Me!!!!!!!!! Im new... Post by alittleconfused on Apr 12th, 2010 at 9:13pm
im afraid the headaches are coming back. or something is happening. a couple days ago i had a headache so painful that touching my face shot a pain straight to my eyes. i wanted to cry and throw up all at once. even when the "cluster", i put them in quotes since they're not diagnosed, are gone it seems i've had a headache almost everyday. they're not like the "clusters" but they're headaches. im so confused with all this!
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Title: Re: Help Me!!!!!!!!! Im new... Post by Ghost on Apr 15th, 2010 at 10:04pm wrote on Nov 30th, 2009 at 5:35am:
Hey Chen I've been called that too! ;D Welcome to our little corner of he11. I havnt been around much but this group of folks never are far from my thought and prayers. Be honest and we will be there, I would have been (who knows) if not for the folks here and not here any more, they will help. Goat has spoken. 8-) |
Title: Re: Help Me!!!!!!!!! Im new... Post by maalstroom on May 18th, 2010 at 8:43am alittleconfused wrote on Apr 12th, 2010 at 9:13pm:
Maybe you should read up on trigeminal neuralgia, I believe touching sending painattacks is a sympton of that. |
Title: Re: Help Me!!!!!!!!! Im new... Post by Charlie on May 18th, 2010 at 10:38am
It might be a good idea for your next appointment to find someone with a little gray hair to tag along. We are a cranky bunch but some of us do well at separating good therapists from doctors that will have you believe that nothing you say is as important as what they come up with. Now and then they need to be reminded that we appreciate some good manners.
Questions should be answered, not dismissed. Good luck and stick around. Charlie |
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