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Title: New to this, very scared, and exhausted!! Post by gymnasticsmommy on Aug 18th, 2005, 8:13pm [b][/b] I am new to this board as well as new to cluster headaches!! I am in my third week of my first cycle. I feel that I have been pretty lucky in my life, I have only had two major health problems untill now. I know that I would gladly relive both of those than this. I thought that I had been in some serious pain before. I was wrong!! I come from a small town and I feel that my doctors don't know too much about this. At first he gave me Immetrex and Hydrocodone pills. One of them or the combo of both was making it worse for me so then his treatment was to do nothing. Just tough it out. Again I wil say that I am very strong but this is unreasonable!! today he gave me Mederol 4mg. Has anyone had any luck with this medicine?? I found your site and feel it is so informative. Thanks so much for that!! :D I don't know how you guys deal with this and still lead normal lives! Any tips, advice, or comments will be greatly appreciated! New to this, very scared, and exhausted!! |
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Title: Re: New to this, very scared, and exhausted!! Post by Salvelinus on Aug 18th, 2005, 8:26pm Medrol has worked very well for me. I've used it on a taper (50mg 1st day, 40 mg 2nd day, etc), and had no clusters while on it. Unfortunately they come back afterwards. The best way to use this is to buy some time while you get on a preventative. Verapamil has worked very well for me. Oxygen is a wonderful abortive, and has no side effects (besides making your thinking very clear afterwards [smiley=laugh.gif]). Read as much as you can here, and the links provided. Give your doctor some links, or print them out for him/her if needed. This is a terrific place to be . . . I'll pray for lots of pain-free days for you . . . Namaste, --Scott |
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Title: Re: New to this, very scared, and exhausted!! Post by E-Double on Aug 18th, 2005, 8:36pm Hiya mommy, here are Some tricks that I used to use and sometimes still do: *Wrapping a bandana tightly around my skull (be careful) *Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering it. *Going from Steam to Frigid shower. *Standing infront of A/C *Icepacks or frozen veggies on the back of the neck or eye *Tons of STRONG coffee. If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... If not some people find Benadryl effective. As far as meds go.... This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 Hang in there my new friend!!! Eric |
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Title: Re: New to this, very scared, and exhausted!! Post by gymnasticsmommy on Aug 18th, 2005, 9:04pm thanks so much for the quick responses! It feels a little better to know that I am not the only one. I really feel like I am going mad. :-[ One minute I am fine then the next I am on the floor crying and cursing and sometimes even banging my head on the couch or hitting myself in the head!! [smiley=huh.gif] This is certainly not my normal behavior!! I will print out those topics as suggested and take them in to my doc. He may be offended but his ignorance should not mean my daily and nightly visits to hell and back need to continue longer than necessary!! I was in a bad car accident when I was 17 ( 27 now) and had some major head trauma to the right side. This is the side my ch are on, any chance that is relevant? Has anyone else had previous head trauma related to ch? I am full of questions and you are the only ones with answers so far. If I overwhelm you guys with qusetions please don't get upset. I just hate having my world kicked out from beneith me with no explination. I also don't want to suffer any more than necessary, if that makes sense! Thanks again!! mommy |
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Title: Re: New to this, very scared, and exhausted!! Post by Salvelinus on Aug 18th, 2005, 9:28pm First of all, please don't worry about us getting upset. We've all been where you're at, believe me. Secondly, I for one do believe that clusters can be triggered by trauma, to the head or to the neck. I think that this is why mine started. Some clusterheads have never had trauma, but they still suffer, so I think that there are multiple triggers to set you up. Thirdly, you need to be your own best advocate. You've got the right attitude--you're the one in pain, not the doctor. My neurologist's response to my request for an oxygen script was "I don't usually like to prescribe it, because it's a hassle. Insurance doesn't always want to pay for it, so I have to write letters . . . " Boo-hoo. I get a horse kicking me in the head and he has to write letters. >:( Sorry, little vent there. I feel better now. [smiley=laugh.gif] Please read all you can here. E gives some great links. Another place to look is floridian's site--it's big, so don't be intimidated, but it's got lots of good info: http://www.med-owl.com/clusterheadaches/tiki-index.php Namaste, --Scott |
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Title: Re: New to this, very scared, and exhausted!! Post by Salvelinus on Aug 18th, 2005, 9:32pm Sorry, one more thought. You may live in a small town, but are you within a few hours drive from a major city? You may want to check out a neurologist there. If your current doctor isn't much help, it may be well worth the drive to see someone who is. --Scott |
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Title: Re: New to this, very scared, and exhausted!! Post by Leggs on Aug 19th, 2005, 5:28pm No one has been here yet to tell you about KUDZU??? check that out in treatments, especially the 2 week survey to see what everyone went through/success or not. the medowl/Floridian site has a source for it, but I found it at a local healthfood store. DO get a neuro who knows about CLUSTER, the migraine treatments I was given did squat for cluster!!! There is a list of recommended doctors over there on the left somewhere. Do you have a supporter who may benefit from the supporter section? Hugs and PF days. |
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Title: Re: New to this, very scared, and exhausted!! Post by BarbaraD on Aug 19th, 2005, 8:09pm If you have a good working relationship with your hometown doc, do your research, then sit down with him/her and have a heart to heart about clusters. That's what I did with mine (my town has a population of about 6000 if no one left town today). We eventually got a neuro in our little family, but we handled it for a long time. You might try some black coffee when you feel one coming on. I know that sounds kinda silly, but it sometimes aborts them for me (and I'm chronic). I wake up with about a 4-5 every morning. I can usually abort it with a couple of cups of black coffee and get going for the day. Of course when they rev up from 0-10 in .3 seconds, that's a different ball game - then it's to the cafergot immediately and some serious headbanging. don't worry about what you say on this site -- we've all said it before (and lived it). You are NOT crazy (well, maybe we all are to a little extent, but that's another story entirely...). Just hang in there and know that when we say, "we understand" you can bet your bippy WE DO! Just know that someone is here 24/7 - we're all insominiacs (and I can't spell that word - we just don't sleep). Good luck and here's hoping you're cycle is short lived. Hugs BD |
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Title: Re: New to this, very scared, and exhausted!! Post by docblondie on Aug 20th, 2005, 12:25am Hello there- sorry to hear you have Ch's. Read the medical info article on the links to the left. Bring that to your doctor- The best thing that has worked for me- (I am a 37 year old female who has had these since 1989) Prednisone has been the only cure all for me- yes, in high doses but it has worked fine for me- no side effects. I start 80mgs for 7 days, 60mgs for 7 days, 40 mgs for 7 days, 20 mgs for 7 days, 10 mgs for 3 days, stop. Usually do this for 3 rounds- or about 3 months and the cycle stops. It may be hard to convince your neuologist to prescribe this high dose at first- but if you find a good neuro. they will give you the pred. Imitrex injections will stop a headache in about 7 minutes. other preventive meds. that are effective for some people are- topamax, & verapamil combination or try individually. Basically it is a trial and error till you find what works for you. The medical info article is great- read it and take it to your neurologist and try everything until you find what works- Oxygen at a high flow- 8-10 litres per minute also stops a headache- you will need a large tank, an H-tank at home, using a mask rather than a cannula. Reading through this site is a great way to get acclimated to other meds. and what works for people. You have found a great starting point! best of luck! |
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Title: Re: New to this, very scared, and exhausted!! Post by dis on Aug 22nd, 2005, 10:35am There are so many good medications now that you are bound to find something that will help. It is trial and error. Just keep trying until you find the right combination. When I am in cycle I take 240 mg. sustained release verapamil and one caffergot before bed each night. If I forget the medication I get a headache. I have also just recently tried oxygen. It is unbelieveable. The headache goes away within minutes. I waited way too long to try the oxygen. You should get it right away. It's the safest intervention. Good luck. One more thing...find a doctor that knows and understands cluster headaches. If the doctor is not working out find another one. |
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Title: Re: New to this, very scared, and exhausted!! Post by gymnasticsmommy on Aug 22nd, 2005, 10:14pm First I will say thanks again. I think I am going to have to go to a bigger town to get some real treatment. I took all the info to my doc and got nothin' ! I chose to try the o2 first since I am not one who likes meds very much. Since I looked okay except for the exhaustion I must be better. Yeah come see me around 1:30 or 2 in the morning! Not so pretty then. I have noticed that my eyelid seems to droop( couldnt think of a better word sorry) for some time after an attack. Is that normal? I still have no abortive treatments could that have something to do with it? Has anyone ever had actual damage to their eyes from this. I don't think the problem is really the eye so I don't think my eye is being damaged. It sure feels like it is going to explode though!! I am going to try to go back to work soon. I worry though because I work graveyards at a sawmill. Nighttime, heights, chainsaws, and CH's ? Doesn't sound like a good mix to me! I have 7 beautiful girls to take care of though! I feel so awful leaving all the work up to my wonderfull hubby! He is wearing himself to the bone!The Medrol seems to have helped some, but as the meds taper down it seems my headaches become more frequent again. It seemed that once I got to the lower doses they just turned back on. I am still frustrated. Thanks for listening, I know I can ramble sometimes. |
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Title: Re: New to this, very scared, and exhausted!! Post by E-Double on Aug 23rd, 2005, 6:24am Hi mommy :), All very comon....... The tapering of the 'roids without increasing a preventative will bring on an increase of attacks. Go to your pharmacy and get some melatonin which you can try to use to help with the night. Not a doctor so do so with knowledge of any potential side effects. (talk to your pharmacist about any potential interactions with anything that you might be taking) Regards, E |
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Title: Re: New to this, very scared, and exhausted!! Post by Salvelinus on Aug 23rd, 2005, 4:20pm Hey, E-- I don't have any experience with melatonin so I defer to you, but if she works nights at a sawmill, would the melatonin be a good idea? If she took it during her normal sleep time, would it help her at 1:30 in the morning? I'm considering trying it myself. Namaste, --Scott |
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Title: Re: New to this, very scared, and exhausted!! Post by E-Double on Aug 23rd, 2005, 4:47pm on 08/23/05 at 16:20:28, Salvelinus wrote:
Funny guy..... If she is working nights then chances are she would not have the "wake up calls" That being said, in general the use of melatonin for those who use it to sleep is to be taken prior to bed time. For the average person this is between 8-11 pm. This is because natural melatonin is relased during the night hours.........very loosley speaking. For us we use it not only to sleep but as a preventative medication. This is why many tend to use quite a bit more than the suggested 3mg. I do not know if it would help during waking ours and wouldn't suggest using it if needing to remain awake during a nightshift. Peace to you! E |
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Title: Re: New to this, very scared, and exhausted!! Post by Salvelinus on Aug 23rd, 2005, 8:08pm Thanks, E. Wasn't trying to be funny, but I did miss that she wasn't currently working. Sorry. I just saw that her hits come at 1:30 or 2:00 and that she worked third shift. Namaste, --Scott |
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Title: Re: New to this, very scared, and exhausted!! Post by E-Double on Aug 23rd, 2005, 8:36pm My apologies for overlooking your line of work. Definitely can't use anything that could make you drowsy. Get yourself a good preventative and a good abortive! Good luck! E |
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Title: Re: New to this, very scared, and exhausted!! Post by Sean_C on Aug 23rd, 2005, 9:26pm on 08/18/05 at 21:04:07, gymnasticsmommy wrote:
I had head trauma too and the clusters started shortly thereafter. Did it cause my Ch, they claim no. Sorry to hear your having a rough time of it, but welcome to the family. We're here 24/7 if you ever need any support of help with something. The lights always on, remember that. I dropped a link for you to read, pfdan to you Sean......................................... http://news.bbc.co.uk/1/low/health/380497.stm |
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Title: Re: New to this, very scared, and exhausted!! Post by gymnasticsmommy on Aug 23rd, 2005, 9:42pm You guys have been so supportive Thanks for that. Having a pretty bad day today. A good question was brought up though. Right now I am sleeping at night and awake during the day. Once I go back to work I will be awake at night and asleep during the day. I wonder if me being awake at night will make the Ch attacks at 1 or 2 in the morning stop? I don't think so because they hit if I am awake now. But once my schedule changes will that alter my body clock any? My work really does not want me to come back because of the danger to myself, but I cannot sit at home for months waiting for this to stop. I have heard it said that you have to take your life back or CH wins! When I was first diagnosed I was scared and depresed. Now after reading about all of you I know I can deal with this once I find what works for me. I am actually quite a fighter I just had a bad few weeks. Any ideas on the hour changes? If that will make any changes as to when the attacks hit? If I can get them to hit at home and not at work then most of the danger would be gone for returning to work. Hmmm. I feel an experiment coming on!! At the very least maybe I can through the beast off for a couple of days, huh? Thanks again. mommy |
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Title: Re: New to this, very scared, and exhausted!! Post by Sean_C on Aug 23rd, 2005, 9:54pm Do you have a name mom ;;D I can't keep spelling gymnasticsmommy, I can only type with two fingers [smiley=laugh.gif] |
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Title: Re: New to this, very scared, and exhausted!! Post by gymnasticsmommy on Aug 23rd, 2005, 10:54pm on 08/23/05 at 21:54:08, Sean_C wrote:
My name is Janet nice to meet you! |
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Title: Re: New to this, very scared, and exhausted!! Post by Sean_C on Aug 24th, 2005, 4:41pm ;;D |
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Title: Re: New to this, very scared, and exhausted!! Post by Salvelinus on Aug 24th, 2005, 5:34pm Janet, I've been wondering the same thing since my last post here. Honestly, I don't know how switching your schedule will affect your CH. I know that schedule changes like you will be experiencing have affected me both ways. If I've been having a tough time, sometimes that will put things on hold. If I've been having a good run, sometimes it will make things worse for a while. Sorry for my crappy answer, but it's all I've got. I have to believe that there is SOME effect, but if it is enough, I don't know. Namaste, --Scott |
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Title: Re: New to this, very scared, and exhausted!! Post by TxBasslady on Aug 24th, 2005, 5:34pm on 08/18/05 at 20:13:30, gymnasticsmommy wrote:
You have to look at it as "the hand we were dealt". You can lead a normal life and deal with CH at the same time. It's not always easy.....but being in the company of others who suffer, enables you to deal with CH a helluva lot easier. Yep, I still get scared sometimes....and there's times I'm exhausted. Just remember that you're not alone. We're open 24/7....and just like Motel 6..."we'll leave the light on for ya." One tip for ya...narcotic meds can result in rebound headaches. Try to avoid those. Good luck to ya....let us know how you're doing. PF vibes, Jean |
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