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swimchica623
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Hi everyone...I'm new here and happy to see that such an active place exists. I am 21, about to graduate with my BA in modern European history and classical archaeology and ancient history this May...I play flute in our orchestra and swim on our swim team.
I had a neurologist at home that wasn't very good (he said "You read to much! I am doctor, you are patient!" he was from Croatia so he was kinda hard to understand!) but even he wanted me to have one up at school too so we went to him, thinking we were going to establish a realtionship in case I had to be hopistalized for migraines again, but instead we got a new diagnosis. I don't have complete cluster headaches, but he diagnosed me with vascular cluster migraines...or something to that sort...vascular headaches with properties of migraines and cluster headaches. I hope I am still welcome here anyway, I get support enough for the migraine feelings, but no one seemed to understand the pain I was going through for what I now know was the cluster part of my headaches! (Which I never call "aches" omg it does not "ache" it...I can't even think of a word, but it certainly isn't ache!!! Maybe my head-about-to-dies.)
Symptoms: The migraine symptoms I get are auras, loss of vision, loss of appetite/vomiting/stomach things, and the pain lasts a little longer due to the migraine component. The cluster symptoms I get are the PAAAAIIIN. Before the new diagnosis I used to think I coudln't suck it up..I knew peole that had a hard time with migraines but how come they never talked about crying during the entire attack, shoving your head in the pillow, wanting ANYTHING to make it go away? I also sometimes get a runny nose and eye on one side and they don't last as long as migraine, even though the pain is far far more intense. They come between 4am-6am, waking me up, and then sometimes around 2pm-4pm, although I'll usually be awake then but it seems more liekly to come if I would be napping. A third time might be 10pm..but the earlier in the day, the more common of a recurring time it seems to be.
I tried Depakote first. When I was first hopsitalized after a week of this agony, they gave me Depakote IV and that stopped it. I got two headaches afterward, but looking back I think those were migraines, not clusters. Only one a day with 48 hours in between and not rip your hair out kind of pain. I stayed on Depakote for awhile...it worked but I didn't like it because I gained weight, which snowballed when I had to take lots of prednisone when I was hopsitalized for asthma and a lung infection. Now I am on Topamax and that is working even better than the Deapakote. With the knowledge of the new diagnosis in mind, I would say it has nearly eliminated the migraine part ...no more auras or nausea, they are short like clusters, about 20 minutes of crying out pain which is intense, but not as bad as before, and not coupled with the other sympotoms of a migriane so easier to deal with. They are also only coming in sets of 2, or even 1! yay!
Ok sorry this is so long. And I hope no one minds a hybrid migraniur/clusterhead here, its just nice to know there are other people that experience similar kinds of pain!!!!!
Hope everyone is having a good, pain free day!
Lisa 
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lionsound
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Re: Hi!
« Reply #1 on: Nov 13th, 2006, 4:11pm » |
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Hi Lisa!
I get migraines and clusters too!(and ice pics, tension and other sundry HA variants) sometimes all at once and sometimes a la carte ...watch out for that cluster migraine diagnosis because what it often means is that, especially as a female, you don't get treated properly for the clusters. i'm diagnosed with migraines AND a cluster variant. i tend not to have cycles...i get them whenever.
a few ?'s:
do you keep a headache diary?
have you ever tried oxygen?
(helps my migraines and my clusters)
welcome
be well and PF,
lionsound
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swimchica623
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Get hit. Hit back harder. That's life.
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Re: Hi!
« Reply #2 on: Nov 13th, 2006, 5:36pm » |
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I'm supposed to keep a headache diary...my GYN wanted me to when she thought they were hormone linked so I did for a little bit then realized they weren't at all...I write regularly in a livejournal and write about them there so there is access to them...sorta haha.
I was given o2 in the hospital before but I don't think they did it right, they used the nose cannulas.
What kind of symptoms do you get? Do you get a mix or sometimes migraine and sometiems cluster?
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Richr8
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It's all about today...
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Re: Hi!
« Reply #4 on: Nov 13th, 2006, 8:01pm » |
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Hi Swimchica,
I am very glad that you found us. Although your condition sounds very complicated, and call it what you will, it sounds just awful. There are folks here that have insight into all sorts of head ailments, so you are bound to pick up some useful advice. If nothing else, there is always someone here to lend an ear,
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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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lionsound
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Re: Hi!
« Reply #5 on: Nov 13th, 2006, 9:25pm » |
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on Nov 13th, 2006, 5:36pm, swimchica623 wrote:I'm supposed to keep a headache diary...my GYN wanted me to when she thought they were hormone linked so I did for a little bit then realized they weren't at all...I write regularly in a livejournal and write about them there so there is access to them...sorta haha.
I was given o2 in the hospital before but I don't think they did it right, they used the nose cannulas.
What kind of symptoms do you get? Do you get a mix or sometimes migraine and sometiems cluster? |
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Please read about O2, you are right... they sure administered it wrong.
A journal can be more like a chart with meds taken, date,time and duration of HA and if the meds helped.
Sometimes I get a migraine, sometimes a cluster and sometimes all mixed up and I really don't care what they are ... one sided, the pain is insane and i just want it to stop. My eye is leaking, my nose leaks too I want to lay down, but I can't be still and I'm photosensitive and pukey and my eye is about to explode.
ANd hopefully I don't get the ice picky jabby things. It's lovely 
read about O2!
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| « Last Edit: Nov 13th, 2006, 9:26pm by lionsound » |
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RichardN
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Re: Hi!
« Reply #6 on: Nov 13th, 2006, 11:47pm » |
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Hello Lisa and Welcome
Another vote for 02 here. Copy the pertinent info and take to your doc. Requires a 15 lpm regulator and non-rebreather mask (the one with the bag) or Clustermask.
If used early-on in the attack . . . can kill the beast in minutes. Works for 60-70% of us to abort an attack.
You've much to read and many questions to ask. . . . fire away . . . there's always someone here . . . . and the answers/info/caring/sharing you'll find on this site are from folks who truly know your pain.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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roy21302
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Re: Hi!
« Reply #7 on: Nov 14th, 2006, 9:28am » |
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Hullo Lisa,
Sorry to have to meet you on this board, but welcome anyhow. You have already got some advise above and I would strongly recommend trying the O2, with a clustermask, at 15 ltr per minute, its great.
Look to your left, you will see some buttons click around on them loads of good sound advise and tips there, find the CH test and take it, then post your score here if you want, it wil be a pretty good guide to wether you have CH. Feel free to come here any time and ask as many question as you want some one will always be here to answer. Wishing you a Pain free time Cheers Roy
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swimchica623
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Get hit. Hit back harder. That's life.
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hope I'm replying right....
« Reply #8 on: Nov 14th, 2006, 11:51am » |
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I couldn't figure out how to reply to indiviudual messages, so I hope by replying to my own everyone will read it! Thank you all for your comments...I will definately look into oxygen more. It sounds scary keeping oxygen around but if it works...and means less drugs...and no pain...well then.
And lionsound...I'm so glad I found you!!! Finally I feel like I'm not alone. I understand what you mean. When I scream and cry the sound makes it worse, but I can't keep them in and somehow it seems to help. I want to move but that makes me more nauseated. My usual battle plan is pressing myself into a corner of a room or couch, flailing my feet about (I guess cuz I can't pace due to the migraine factor) trying to contain the screams into silent ones, and pressing my hand into the side of my head instead of hitting it. That seems to be the plan of action that satisfies both monstors. Then it seems like the cluster factor leaves and I'm left with migraine, but by then I can lie still and eventually fall asleep. Honestly I am kinda glad to have received this diagnosis becaue I just thought I was being whimpy with my migraines! I mean I've heard of people having them SEVERE but its nothing like I went through...no crying and screaming out in pain and trying to smush your face in because somehow that helps a little bit. So at leat I know I'm not a wimp
:0)
Unfortunately I think another cycle is starting. I got one while driving to swim practice yesterday and another while lifting this morning. It was such a good lift too..I benched 100lbs 10 times!
I have leftover headache now? Do other people get that too or is that a migraine thing? My mom (migraines only) gets that but with all the screaming and smushing my head that I do I wonder if thats what causes this. Trying to write about Alexander the Great...isn't that exciting?
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mcf69
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I am acutely aware of where my trigeminal nerve is
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Re: Hi!
« Reply #9 on: Nov 14th, 2006, 12:42pm » |
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on Nov 13th, 2006, 5:36pm, swimchica623 wrote:| I was given o2 in the hospital before but I don't think they did it right, they used the nose cannulas. |
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I was just wondering what they were giving you the O2 for, the headaches, or the asthma/lung infection? That would make a difference in flow rate/delivery style. I know it sounds scary having the oxygen around, but it is a whole lot better than pumping yourself full of meds that have oodles of side effects, the O2 is safe and very effective.
Hope you're feeling better and getting some PF time.........
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Linda_Howell
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Re: Hi!
« Reply #10 on: Nov 14th, 2006, 12:47pm » |
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Lisa, there is nothing scary about oxygen. I have a welders tank in my garage and an e-tank next to my bed. It is no more dangerous than turning on a gas stove or something like that. You are, more than likely a responsible person who has common sense.
If you or anyone in your home smokes..don't turn the 02 on til done. Same goes for a lit candle or fireplace...things like that. Wait a few moments after you've turned them off too before turning on the 02. It really is just common sense stuff.
Do not get the nose cannula. They are useless. Make sure they give you a non-rebreather mask.
What you refer to as a left-over headache COULD be something we call a shadow. A low-grade pain that sticks around and doesn't make you want to bang your head into the walls but it hurts & is very frustrating. Caffeine sometimes gets rid of those, sometimes they go away when they're good and ready and not a moment sooner. 
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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lionsound
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Re: hope I'm replying right....
« Reply #11 on: Nov 14th, 2006, 2:37pm » |
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on Nov 14th, 2006, 11:51am, swimchica623 wrote:
that's right! you ARE NOT a wimp.
and just so you know I am not the only one here who gets more than one type of headache...there are other women and some men too... you are really not alone any more! you're standing in a crowd.  
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swimchica623
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Get hit. Hit back harder. That's life.
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Re: Hi!
« Reply #12 on: Nov 14th, 2006, 6:11pm » |
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on Nov 14th, 2006, 12:42pm, mcf69 wrote:
I was just wondering what they were giving you the O2 for, the headaches, or the asthma/lung infection? That would make a difference in flow rate/delivery style. I know it sounds scary having the oxygen around, but it is a whole lot better than pumping yourself full of meds that have oodles of side effects, the O2 is safe and very effective.
Hope you're feeling better and getting some PF time......... |
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Both...but the time I was referring to was with the head-about-to-dies. It was kinda silly too...it was when the pain was gone for the time being, and the nurse came up to me and said "there have been studies that says oxygen can get rid of this so here you go." and puts on 1 liter of o2 in a nose canula. I took it off after about 15 minutes cuz I felt silly being able to breathe fine..usually I get o2 when I can't breathe!!
I get 2-4 liters for asthma. Once they gave me 10L through a nose cannula, which you are totally not supposed to do...I was in major distress then and apparently someone wasn't thinking! It didn't have a bubbler either. I was blowing out blood for about a month!!!!
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swimchica623
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Get hit. Hit back harder. That's life.
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Re: Hi!
« Reply #13 on: Nov 14th, 2006, 6:14pm » |
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oh and lionsound you are TOTALLY furthering my stereotype that all people from maine are.....nice. 
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mcf69
New Board Old Timer
I am acutely aware of where my trigeminal nerve is
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Re: Hi!
« Reply #14 on: Nov 14th, 2006, 8:51pm » |
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on Nov 14th, 2006, 6:11pm, swimchica623 wrote:
Both...but the time I was referring to was with the head-about-to-dies. It was kinda silly too...it was when the pain was gone for the time being, and the nurse came up to me and said "there have been studies that says oxygen can get rid of this so here you go." and puts on 1 liter of o2 in a nose canula. I took it off after about 15 minutes cuz I felt silly being able to breathe fine..usually I get o2 when I can't breathe!!
I get 2-4 liters for asthma. Once they gave me 10L through a nose cannula, which you are totally not supposed to do...I was in major distress then and apparently someone wasn't thinking! It didn't have a bubbler either. I was blowing out blood for about a month!!!! |
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Jeesh Lisa, 1 LPM?, thats just a tad inadequate for, well about anything....., much less CH. The 10 LPM is just a little off the wall too, you're never supposed to go above 6, besides being uncomfortable for the patient, anything above about 4 is wasted just by the design of the cannula, and no humidity?, no wonder you were blowing out blood for a month, ouch.
I think if you try O2 at the proper flow rate (10-15 LPM), with the proper delivery method (non-rebreather mask) you'll find a huge difference in the relief it gives you. Like said before, no need to be scared of it, O2 does not burn or blow up, just speeds up combustion, so a little common sense goes a long ways.
In the mean time here's a good link to check out, and print off and bring to your doc:
http://www.aafp.org/afp/20050215/717.html
Best of luck........
Ben
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swimchica623
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Get hit. Hit back harder. That's life.
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Re: Hi!
« Reply #15 on: Nov 14th, 2006, 9:08pm » |
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Thanks Ben...yeah I knew 1L didn't do anything that's the other reason I took it off! With asthma I never get below 2.
I've only gotten 10L once and that was because I was satting very low...but it definatly felt stronger than 4L coming out of the nose cannula! Maybe if they used the right stuff they could have gotten my o2 sats up faster, sheesh, I ended up in the ICU that night and lets just say my pulmonologist ended up switching hospitals because he didn't like working there so I switched too!
Maybe I will consider oxygen..I mentioned it to my mom but I think we are both unwilling to try anything until another month. It takes 6-8 weeks for Topamax to work but if I am still having symptoms or can't stand the pain then oxygen will be the next thing I try, thanks to this board! So thanks a bunch still, your opinions are not ignored, I promise!!!
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mcf69
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I am acutely aware of where my trigeminal nerve is
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Re: Hi!
« Reply #16 on: Nov 14th, 2006, 9:34pm » |
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Jeesh, sounds like you've had some serious respiratory problems, how well controlled is your asthma?, have you been evaluated as to where your sats stay? Hypoxia is a big trigger for headaches, just thinking out loud.....
The O2 can be used as a stop-gap between now and when the Topamax kicks in for immediate pain relief. I've had my doc try to push the Topamax on me, but refused it after hearing all the "dopymax" stories here on the board, so all I use is the O2 and occasional shot of Imitrex, I can't afford to be squirrelly any more than I already am........
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swimchica623
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Get hit. Hit back harder. That's life.
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Re: Hi!
« Reply #17 on: Nov 14th, 2006, 9:53pm » |
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My asthma is very well controlled now! haha ok after all I am revelling my entire complex medical history. I have the whole gammat of allergic conditions and back then when my asthma got crazy I was developing a severe dairy allergy...we figured it out and I got on this wonderful drug called xolair and since then I've only been in the hospital 3 times, once a year, and only about 4 prednisone bursts a year! My lung functions is actually wonderful on a typical daily basis, and when "the demon" doesn't have me I have 9 swim practices a week, 6 days a week (hard core athlete!! *shows huge musclesssss*).... so its not an issue anymore. Yay.
I'm using the relpax in addition to the Topamax, imatrex didn't seem to work but relpax works in the same way. I was afraid of Topamax side effects but decided to try it anyway. I figured someone telling me I was going to be dopey was like telling an obese person they were going to gain 10 pounds. I haven't noticed many side effects..maybe a little trouble putting concepts together, just slower but it comes eventually..and I lost some weight and I don't really want to eat anything.
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mcf69
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I am acutely aware of where my trigeminal nerve is
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Re: Hi!
« Reply #18 on: Nov 15th, 2006, 11:19am » |
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Lisa,
Take a look around the board, there are alot of opinions on Topamax, both good and bad. If you want to talk to someone with personal experience w/Topamax look for Edouble, he's a good one to talk to concerning meds and side effects.
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swimchica623
New Board Veteran
Get hit. Hit back harder. That's life.
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Re: Hi!
« Reply #19 on: Nov 15th, 2006, 4:35pm » |
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Thanks! So far I've been veeeery happy with it. I was scared at first, I heard so many horror stories! But, nope, last time I checked ummm yuuuup my brain is still there. Whew!!! hehehe. I've lost some weight but its not a problem yet. I lost about 14 pounds in 4 weeks, but 5 of it I had gained sudden from being on Depakote and prednisone at the same time ummm NOT a good mix. I'm maybe slightly ditzy but I've aaaaalways been like that so honestly I think I'm just more aware of it to tell you the truth. If it has made me ditzier than its not a big problem at all...not enough to impact my schoolwork anyway, which is intense.
Thanks for replying though and I'll keep an eye out for the other Topamax user!!!
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