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Title: I'm new ... Post by blessedmomof5 on Mar 24th, 2006, 12:34pm I am so relieved to find others that can relate although I wouldn't wish this ..what?...disease? on anyone in the world...well maybe a few lol . Mine started as a cycle a year ago..it was the end of February . I ended up in the ER and the best they could tell me is "i think they are A typical migraines" meaning they have no clue so they are saying they are migraines that look /feel nothing like a migraine lol. I almost wish it was a migraine for the simple fact that there apears to be more help and support for migraine sufferers. Ever wonder if there are people out there that think they have migraines and can't figure out why their meds don't work and in all actuallity they have CH? Anyway..i was going to intro myself . I do need some advice so I hope many of you read this. I am a 28 year old stay at home mom of 5. When my CH first started , the docs had no clue what it was .I lived in Idaho then and I don't think technology or docs are as good as they are where i live now. I went through MRIs , CT scans, lumbar puncture..tons of bloodwork. We had no insurance so we had huge medical bills until i finally grew desperate enough to seek a free clinic. The doc that i finally found that knew what he was talking about . He suggested that they were CH from the beginning , but at that point my CH were causing memory loss, confusion , and hair loss which led them to look at other possiblities. So we went through months of trying meds with no relief and test after test. My concentration and memory loss got so bad that i couldn't care for my children. The pain was so intense that i was bedridden..or should i say houseridden since i spent a lot of time pacing restlessly ) Finally 6 months after they started they subsided and eventually dwindled down to the occasional bad headache . I thought it was over. My family was relieved but no one more than I . We moved and life was good and then ....it hit again. So I'm on like week 4 ..but I'm out of meds and I'm in a new city in a new state clear across country and I dont' have a doc now. I'm searching one out and praying every day for relief. Trying to stay out of the ER. SO that brings me to some questions : 1. have any of you ever been put on a regimen of Ibuprofen along with whatever other meds you're on ( as a preventative and anti-inflammatory? 2.Have any of you suffered from memory loss ,confusion or hair loss due to CH? 3.Do you ever have pain in the back of your head ? I ask this because after xrays the doc said I have spine straightening due to spasms caused by the headaches ..which in turn threw the rest of me out of whack and causes pain in the back of my head..right where your neck begins. 4.what gives you the most relief?? Any help anyone can offer would be so greatly appreciated. I can't let this stop my life again, but so far it already is .My poor husband works himself ragged at work only to come home to play Mr .Mom and take care of 5 kids ( who happen to be on spring break now ..ugh!) Thanks and I am so happy to be a part of this group. |
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Title: Re: I'm new ... Post by dejay on Mar 24th, 2006, 12:56pm hey mom5,, I'm pretty new here also but I know what a blessing it was finding this place. I'll just share my experience. I had been treated for sinus infections twice, than 2 years ago got a different cycle. I have a good, understanding doc, I downloaded info from this site and brought it to him. He called a neuro, and started me on a steriod taper, gave me verapamil, and imitrex inhalers to abort attacks. I found a CH specialist ,I think on the "oche link", and saw him after cycle was done, he just ordered tests, but said my doc did fine. Anyway, I think & hope I'm at the end of this cycle, I went to my regular doc, got same treatment, and it worked fine, except we uped verapamil dose this time. Keep reading, get as much info as you can, I know someone told me to make sure I knew more about CH than my doc, and keep searching till you find a doc who can help you. Good luck dejay |
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Title: Re: I'm new ... Post by Guiseppi on Mar 24th, 2006, 12:57pm Oxygen is mine, and many others, first line of defense. Read the oxygen link on your left. I use a demand regualtor, others use the non re breather mask or the "cluster mask" described in the link. However you set it up you must use pure oxygen for it to be effective. Stops my attacks in 5 to 10 minutes. I have to take cafergot when I start the oxygen or the beast comes right back 10 minutes later, others find just the oxygen is enough. You need a two pronged approach to battling the beast. Since you're episodic, like me, you go on cycle and off cycle. When your cycle starts up again you need some type of preventative, I use lithium, then an abortive for the headaches that break through, I use oxygen and cafergot. The advantage to the ones I use is they're all relatively cheap. Read, read everythng on the boards. As you've already found, docs don't know a lot about these, you have to manage a lot of your own care. Well that was awfully long winded of me but I hope it helps, welcome to our world and I pray you find something that helps you!! Guiseppi |
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Title: Re: I'm new ... Post by Karla on Mar 24th, 2006, 12:58pm I don't take ibuprofin because it does nothing for my ha. There is one anti inflamatory medicine called indomethacin or indocin that is sucessfull in treating a ch derivative ha called cph. 50mg 3x/day. Within days you should notice relief if it is going to help you. Otherwise don't bother with aperin, tylanol or ibuprofin! 2) Yes I suffer from memory loss and confussion and at times hair loss. But the hair loss was a side effect of certain medicines that I was on at the time. Not sure if the memory loss and confussion are caused by the ch or depression. 3)Yes I get pain in my upper neck. I see a chiropractor for that and get great relief. Don't think it is related to ch. 4) Lithium and oxygen worked for 2 years and then quit working for me. 900mg/day see oxygen info link on left side of screen <== Welcome to the family! |
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Title: Re: I'm new ... Post by nani on Mar 24th, 2006, 1:03pm Welcome, and sorry you had to find us. 28, CH, and 5 kids? :o That's probably a good thing, you're young enough to have the energy for them. You've found the best place to deal with these...there is a ton of info and support here. Read, read and read some more. Start with the oxygen link over on the left. Then read this: http://www.ouch-us.org/medications/medications.htm it can help you and your new dr decide which meds to try. Then look here for a recommended dr by area: http://www.ouch-us.org/chgeneral/doctors.htm There are also some alternative treatments that you can read about on the medications board. Have a good look at the top thread titled: What's all the kudzuuuu about I'll answer your questions the best I can: 1. Ibuprofen may do more harm than good. Overuse can cause rebound (or medication overuse) headaches. They're not powerful enough to touch the CH pain. 2. Memory problems, yes. Confusion, yes. Both of those are likely due top the lack of sleep and high pain levels we live with. Hair loss...only where I've pulled it out during an attack. No other hair loss. 3. I have a spot where you describe it, on my CH side. Others have a visble lump there. I get spasms there during an attack. 4. Alternatives. I had great success with kudzu for a while and now am using clusterbuster treatment. www.clusterbusters.com I spent many years as an misdiagnosed episodic. Then I was chronic for over 5 years. All standard treatments eventually failed me. I busted that 5 year cycle with clusterbusters. I still battle, but with better weapons. pain free wishes, nani |
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Title: Re: I'm new ... Post by carriefu on Mar 24th, 2006, 1:46pm Welcome Mom of 5!!! I have four..what a cool thing to have a large family huh?? ;) How long did you say your first cluster was?? Did the Dr.s put you on any long term meds???I'm fairly new here also...but ive had clusters for 17 years...I'm winding down from my longest episode ever at this time(knock on wood)let any of us know when we can help...almost time to try for our 5th... [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: I'm new ... Post by blessedmomof5 on Mar 24th, 2006, 2:46pm My first cycle lasted for about 6 months. RIght now I am on week 3 or 4 of this new cycle. I wasn't that sure that I had ch until i read the home page of this website with the testimonials. It was like looking in a mirror. After I posted this , i was thinking and my thoughts took me to Jan of 2003 when I was hit with this incredible headache ( at that time the worst in my life) and I felt almost as if I could feel the muscles holding my eyeballs in..not sure if that makes sense, but it was as if I could feel every nerve. I was screaming and rolling in bed , pacing and rocking. I scared my kids to death. The neighbor lady had to take them for me and i was a mess for days after. I do find that I feel sore after a bad attack. Like i sustained a bad head injury. I wanted to say thank you to those of you that replied to my post. I am so comforted by your words of wisdom on this matter. as an answer to your question about long term meds, not really..we were trying everything in the book from imitrex shots ( which didn't help- only made me feel like a druggy in pain) to methyl prednisolone ( awful stuff) ,gabapeptin , and vicodin. They eventually had me on soma to help me sleep every night and i was on that for a good few months until they took me off of them for fear that i would become dependant. Nothing they tried worked, so i had to tough it out until the cycle ended. I dont think I would have made it with my sanity in tact without my husband , my God and my kids. I did have another question..do you all see regular general practitioners or neurologists ? or some other kind of specialist?? |
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Title: Re: I'm new ... Post by Bob P on Mar 24th, 2006, 3:02pm ibuprofen won't help. I tried that with aspirin years ago. During a cycle I would take 3 aspirin every 3 hours to try to lessen or prevent the attacks. It didn't slow down the attacks and I would up with a duodenal ulcer. |
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Title: Re: I'm new ... Post by nani on Mar 24th, 2006, 5:29pm on 03/24/06 at 14:46:31, blessedmomof5 wrote:
It's probably best to see a neuro who specializes in headaches, and get a definitve diagnosis. That's still no guarantee that they'll be familiar with CH. You are your own best advocate. Learn everything you can before you see any dr. Once you've had a definite diagnosis, as long as you're well informed, you and your GP can probably handle it. In the meantime, read all you can. It would be helpful if you keep a headache diary. Record times of day, intensity (see the kip scale on the left), duration, etc. I'll offer one more thing. With younger kids, some people keep a special box of things (toys, art supplies, etc) that only comes out when Mom or Dad was getting hit. It gave them something "new" to do and stay distracted. It can look scary to little ones. Keep us posted. |
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Title: Re: I'm new ... Post by cluster_mom on Mar 24th, 2006, 8:24pm I am also new to this site, unfortunately not new to ch. I hav e had ch for seven years now. Since I was 18-19 yrs. For a long time I was told that I had migraines, as they run in my family, but I could never understand how they could suffer for days with a migaine and if my headache went for an hour I had to go to an ER. I saw what was suspose to be the best specialist in the midwest so I was told and he swore up and down that there was no way that it was ch and only men got that and I would be beating my head against a wall if I got a headache like that . All I could think was I am when Im in that pain. Then when I had to change insurance I saw a PA that showed me the symptoms of ch and that was exactly what was going on with me. Unfortunately by the time I could be seen my episode would be over or nearly over and I figured whats the point. So after the birth of three more children I have finally sought medical attention. I have four kids and my husband works second shift and I can barely take care of them let alone the house and I feel like a failure as a wife and a mother. I am a stay at home mom because after going throught many jobs and then losing them when the ch would act up I feel like its the only choice I have. I dont get the ch when I'm pregnant and would keep having kids forever if it meant that I wouldn't have to go through all the hell that ch brings. So I was wondering How do people with ch hold jobs? How do you function when 3-6 months out of the year you're disabled? Am I the only one who gets the "well its a headache we've all had headaches, your just a baby" talk or look? If everyone could experience the pain of ch just once they would understand and maybe be more understanding. My life is falling apart emotionally and financially because of the ch. I pray everyday for an end to this hell. cluster_mom |
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Title: Re: I'm new ... Post by carriefu on Mar 24th, 2006, 8:57pm I think most people here..will tell you that we've been there....you'll find a great support system here |
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Title: Re: I'm new ... Post by BarbaraD on Mar 24th, 2006, 9:37pm Melatonin at night (6-12mg) works great to help you get the sleep you need and helps with the exhaustion. OTC pain meds don't work and can cause rebound headaches... O2 is the breath of choice around here. Most of us swear by the stuff (10-15 liters per minutes with a Clustermask). At the first sign of a CH (before it hits a 6-7) drink COFFEE or RED BULL. This will sometimes abort the oncoming Kip-10. The caffeine constricts the blood vessels (which works with CH). If the triptins don't work then ergotomines might. I perfer the ergotomines. They last longer. There are preventatives by the dozens out there... Finding what's right for YOU is the fun part. Most of us (and I'm chronic - no let up) have been thru most of the meds on the market. The best thing you can do is find a doctor who you can educate into CH. If you can find a neuro so much the better, but a GP will work. Go in armed with information (print it out from this site). Clusterville has the best research in the world on CH. Read, read, and then read some more. And before you ask -- NO you are NOT crazy (well, any more than the rest of the residents here ;;D). CH will make you start believing you are if you let it. We just refuse to let it - Welcome to Clusterville and the funny farm... someone is always up around here. Ask questions - vent, but stick around... Hugs BD |
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Title: Re: I'm new ... Post by Melissa on Mar 24th, 2006, 9:50pm Last cycle I used Kudzu for a preventative and Oxygen as an abortive. You can find lots of very helpful info. with the links Nani posted. Sorry you had to find us, but welcome to the family! :)mel |
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Title: Re: I'm new ... Post by kcopelin on Mar 24th, 2006, 11:14pm Whoa, 5 kids and CH!? And you have memory loss, confusion and hair loss? Hmm...my CH causes lack of sleep which causes confusion. I also have memory loss. Any hair loss I have has been casued by my children. ;;D I take melatonin and benadryl at night-it killed the night time hits. O2, Imitrex occasional vicodin. Have tried everything else, almost, as near as I can remember. Welcome home, sorry you had to find us, but glad you did. Someone's here almost all the time, and there is a wealth of information on this site. How old are your kids? Mine are 15, 14 and 8. They still freak out a bit when I have to hit the O2. But the picture on www.ouch-us.org website really helped them understand where the pain was. PFDAN Kathy |
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Title: Re: I'm new ... Post by blessedmomof5 on Mar 24th, 2006, 11:26pm ;) My kids are 10, 9, 6 1/2, 5, and 2 1/2. One boy and four girls. They have seen me in pretty bad shape but I thank God for the resilience and sometimes actual wisdom and compassion of a child. They may not undertstand but they will be the last to belittle your pain or call you crazy. i love my kids so much ! I have not tried oxygen yet ( someone asked that ) ..just lots of med. I was interested about the benadryl helping ..how does that work? I'm amazed at the wealth of info here on CH. I plan to show this website to my husband and also show him the OUCH website as well. He has been such a support and I think a model of how a husband and father should be . |
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Title: Re: I'm new ... Post by Gator on Mar 25th, 2006, 12:52am If you check out the label on a bottle of Tylenol PM, the active ingredient for the PM part is Diphenhydramine Hydrochloride. That is also the active ingredient in Benadryl. |
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Title: Re: I'm new ... Post by burnt-toast on Mar 26th, 2006, 8:21am "A typical migraines" - I know this diagnosis - I lived with it for two years and took lots of worthless meds. before finally receiving a proper diagnosis. 1. have any of you ever been put on a regimen of Ibuprofen along with whatever other meds you're on ( as a preventative and anti-inflammatory? This and worse but it soon became apparent that I was wasting my time. That's what forced me to seek help from a Neurologist at a headache clinc and obtain more appropriate treatment. 2.Have any of you suffered from memory loss ,confusion or hair loss due to CH? Memory/confusion issues are absolutely a side effect of sleep deprivation. I no longer fear there is damage from the pain but the long term effects of a terribly unrested mind and body are a major concern. May be contributing to the hair loss you mentioned. Also side effects of many medications that are prescribed - know what you are taking. Some links that will help follow and never forget to discuss prescribed medications with a Pharmacist - Docs. do not necessarily know everything http://www.nlm.nih.gov/medlineplus/druginformation.html http://www.drugs.com/ 3.Do you ever have pain in the back of your head ? I ask this because after xrays the doc said I have spine straightening due to spasms caused by the headaches ..which in turn threw the rest of me out of whack and causes pain in the back of my head..right where your neck begins. I do not have pain in the back of my head but it appears to be a common symptom listed by many who post. 4.what gives you the most relief?? Treatments are generally broken down into three groups - abortives, preventatives, and alternatives. The following links will provide some basic treatment information. Do some Google searches on CH treatements and review the site - there's a lot of good information out there that will get yo pointed in the right direction. http://www.aafp.org/afp/20050215/717.html http://www.emedicinehealth.com/articles/37974-8.asp I do not respond to abortives-when I get hit my therapy is very hot tea and as best as possible, concentration on bright light sources, maybe some cold air and lots of pacing. I no longer take any over the counter or prescription pain meds. because in tracking their effectiveness - the hot tea, concentration on light sources, cold air and pacing are just as effective. My preventative poison is a mix of Verapamil-720mg, Lithimum Carbonate-1200mg, Melatonin-9mg and recently added 520mg Prednesone tapers. You'll find that everyone seems different and either respond/fail to respond to treatments that may work for others. Finding your treatment will take work. Find a knowledgeable doctor/headache clinic. Maintain a good journal and begin experimenting with treatments - you're already experiencing this nightmare's return visists so you'll need to be prepared for the battles. Keep us up to date on your progress. Good luck on your journey. Tom |
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Title: Re: I'm new ... Post by blessedmomof5 on Mar 26th, 2006, 10:55pm wow Tom ..thank you so much for all of the information!It really helped. I woke up this morning feeling like i had been hit by a truck. I slept ok last night ( though my husband could tell you for sure - I very often do not remember the night by the time morning comes. I know i used to wake up screaming from a very vivid dream of being hit or shot or kicked in the head...or my eyeballs falling out of my head or being plucked out. I've given him many scares . SOmetimes i will just sit up suddenly in bed as if something startled me awake and i will just rock in the bed half asleep. I know I don't get quality sleep now, but i don't really remember why. But through the day my entire body hurt and my head hurt even worse. When you say concentration on bright light source..it actually helps you to look directly at a bright lightbulb for instance? or the sun? after being hit I have a hard time with bright light. just wondering if i am understanding you right. anyway i will keep you posted for sure. my husband found out a bout a brand new neurological clinic right down the street from our house and is looking into getting me seen there. I pray the best for all of you..help and relief if not a cure. God bless! |
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Title: Re: I'm new ... Post by burnt-toast on Mar 27th, 2006, 9:33am Can't say I would recommend staring into bright light bulbs or the sun. If you're familiar with plasma screens (PC monitor - TV) they project a veryt bright but muted light that is not straining to the eyes. The Neuro. who first diagnosed me used a box that projected a bright white light through a white plexiglass screen that muted the intensity. It was not too much unlike a plasma monitor and it seemed to help so now I just adapted it to what I had. I bring up a game of spider solitaire and concentrate/stick to it as long as possible. Add some trips outdoors into the night air and some pacing with very hot tea - and I survive. Tom |
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Title: Re: I'm new ... Post by blessedmomof5 on Mar 27th, 2006, 4:41pm I might sound kind of dense here ;;D lol but are you saying that it might help to stare at /concentrate on the pc screen or the tv ?? woo hooo if that's correct ! lol That's a great excuse to be online and watch tv lol. i was hoping you werent' talking about staring at lightbulbs or the sun lol ..i was wondering lol ...relieved. |
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