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Title: Need to have someone to talk with... Post by shenke on Jan 30th, 2006, 9:14pm It's been tough this time, haven't have CH in 5 years, who would have thought they would would return. Getting more educated this time though. Makes me mores scared at times, not sure my husband understands....It does help to read others stories. Real glad to have found this site. Sheila |
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Title: Re: Need to have someone to talk with... Post by Jonny on Jan 30th, 2006, 9:16pm You hang in there, shenke....we will help you!!! |
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Title: Re: Need to have someone to talk with... Post by thebbz on Jan 30th, 2006, 9:32pm shenke, glad you found the site. Ch is tough..your tougher. Welcome and stick around. Lots to talk to. Bring the other half too. jb |
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Title: Re: Need to have someone to talk with... Post by shenke on Jan 30th, 2006, 9:37pm Thanks, but in the middle of the night I don't feel so tough. I feel like I'm going insane. It's scary...thanks for listening. It's hard to explain to just anyone - Sheila |
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Title: Re: Need to have someone to talk with... Post by thebbz on Jan 30th, 2006, 9:42pm Thats OK I'm a 6'4" huge hairy biker and I cry like a baby :'( [smiley=laugh.gif] Just kidding. Nope dont have to explain the pain. Have you read the information on the left? There is a chatroom somewhere around here as well. Do you have an abortive? jb |
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Title: Re: Need to have someone to talk with... Post by boonie on Jan 30th, 2006, 9:44pm This is the one place everyone knows what you are going through, ch. just plain sucks but knowing you are not alone is a comfort . I have been doing the night dance myself lately but it is getting better but it is never a fun ride. you hang in there. |
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Title: Re: Need to have someone to talk with... Post by thebbz on Jan 30th, 2006, 9:45pm http://www.clusterheadaches.com/chat/ theres the link I think someones home. |
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Title: Re: Need to have someone to talk with... Post by E-Double on Jan 30th, 2006, 9:46pm Hi Sheila, 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 used 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 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 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....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. (Maybe I should start folowing my own advice again since my nights suck again hahahaha!) 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..... Like I said we are all different. Best wishes, good luck & stay as positive as you can!!!! Eric |
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Title: Re: Need to have someone to talk with... Post by Sean_C on Jan 30th, 2006, 9:51pm Hang tough Shiela, hopefully it'll pass soon and give ya another 5 years of pf time. The lights on here 24/7 if ya need to talk ;) Cheers [smiley=hug.gif] Sean................................ |
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Title: Re: Need to have someone to talk with... Post by Redd715 on Jan 30th, 2006, 10:07pm Sheila, I felt the way you do before I found this place. The people are the best around, They are my family, friends, and fellow sufferers. Read Read and then Read some more. You've got a home now with those who DO understand. Pegg |
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Title: Re: Need to have someone to talk with... Post by Barry_T_Coles on Jan 30th, 2006, 10:24pm on 01/30/06 at 22:07:54, Redd715 wrote:
Well said Pegg; that's exactly the way I felt, this place is the best drug I know. Sheila Welcome Your among people who understand Kind Regards Barry |
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Title: Re: Need to have someone to talk with... Post by burnt-toast on Jan 31st, 2006, 6:33pm Gone only to come back - that's one of the things that makes CH so thoroughly confusing. Hang in there is the best advice we can offer, hopefully you will stay on a 5 year cycle of freedom. Tom |
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Title: Re: Need to have someone to talk with... Post by hutton on Jan 31st, 2006, 9:34pm this place is great and all the people here really care, it helps me cope with this beast better than i have been able to in the past it is still been tough but i have learned alot from the peole here and for that i am greatful may you all find happiness and be free from suffering |
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Title: Re: Need to have someone to talk with... Post by shenke on Jan 31st, 2006, 9:46pm It feels so good to come back and read so many replies. You guys really do care. Brought tears to my eyes. Thanks a million. This is what keeps me going!!!! |
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Title: Re: Need to have someone to talk with... Post by E-Double on Jan 31st, 2006, 9:48pm http://www.clusterheadaches.com/chat/ |
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Title: Re: Need to have someone to talk with... Post by imnotbub on Feb 1st, 2006, 11:09am It feels so good to come back and read so many replies. You guys really do care. Brought tears to my eyes. Thanks a million. This is what keeps me going!!!! I know how you feel. I pass the computer every couple of seconds when I'm dancing with the beast, and I can 'feel' the support even if I'm not on. |
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Title: Re: Need to have someone to talk with... Post by LeLimey on Feb 1st, 2006, 1:24pm on 02/01/06 at 11:09:31, imnotbub wrote:
That's what keeps me going too :) Some days it's the only thing that keeps me going! |
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Title: Re: Need to have someone to talk with... Post by Dragnlance on Feb 5th, 2006, 3:33pm Sheila, As a new person to this site, but as a chronic CH person, I know just what you mean. I have posted a thread just a short time ago, and already people are offering help that I never knew people would offer a stranger. Unfortunately the monster is attempting to rip my brains out as I write this, so if it doesnt make a lot of sense, pardon me. All I can say is, don't let go. Days like this are hard to get thru, but there is a light at the end, somewhere, somehow. To date, the longest time PF that I can remember has been 3months 1 week and 5 days. I have not seen that for several years. I have had 2 PF days since November 27, 2005. Some days are worse than others. Hang on, as, from what I read here, all understand your pain here. Cyber Hugs!! Lance |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 5th, 2006, 4:11pm Hi...my first post here. So glad to have somewhere to go to say the things I am sure many of us feel/think, but can't say to family and friends. Try as they might, they just CAN'T possibly truly understand the emotional turmoil that goes along with the physical torment we go through. One of the worst aspects of it all is just that- no one to talk to that can really understand. It's so hard to put it all into words. Are there even words to describe what we feel? Broken thoughts and bits of sentences that can only be comprehended by a fellow victim. I say victim, because I do feel that way. A crime is being perpetrated against me/us. Unfortunately, the criminal has yet to be caught and brought to justice. Frustration and anger rage in my mind at this unseen villain. It eases some of the tension just knowing that there are others out there who have similar feelings... |
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Title: Re: Need to have someone to talk with... Post by BobG on Feb 5th, 2006, 4:17pm Welcome to the board cynner. Texas, huh? We have a lot of you people here. Not that that is a bad thing. Tell us some more about yourself. |
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Title: Re: Need to have someone to talk with... Post by Linda_Howell on Feb 5th, 2006, 4:46pm You can go to our site here: http://www.ouch-us.org/members/cgi-bin/yabb/YaBB.cgi and we will listen. Or give you advice. or help you find links. Or whatever you need. Linda |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 5th, 2006, 5:13pm Wow, u guys are quick! I'm still wandering around the posts here, and already there are responses to my post. :) More about me? Hmmm... 37y.o. mom of wonderful 6y.o. boy, Dylan (my reason for living when the pain makes me want to quit; u know what I mean) Had migraines since age 14 -MAJOR head injury at that time, they can't tell me if HAs are a result or coincidental as they are in my family as well. CH as well in the past 10 years or so. No one told me there was a difference back then, so maybe longer? Probably the same story as many; seen too many docs, tried too many drugs, studies, home remedies, etc. Some new things work, but only for a short while, then they just stop. Been accused of "Drug Seeking", been told I needed a shrink instead of meds, been given massive pain-killers, anti-depressants, etc. CAT scans and MRI, MRA. They did find a few "white spots". Gotta re-test in a few months to see if they change, blah-blah-blah. Still no real answers or solutions. Basically all but disabled. (Docs agreed a while back, SSA didn't agree, so here I am...trying to work around the pain, etc.) Hubby and I have our own custom carpentry business, but the frequent HAs are a major issue. We constantly have to juggle our schedule, etc. It causes stress which doesn't help the situation at all... :( Currently on Topamax and Maxalt w/ Fioracet for back-up. Of course, these do nothing for the CH, but they do help the MH sometimes. I hate the "stupids" from the Topamax. I USED to be very intelligent and quick-thinking. Now I have trouble remembering what day it is most times. FRUSTRATING!!!!!!!!!!!!!! As of today, PLZ O PLZ!, my 2 and a half week MH/CH episode has subsided. :-X Thanks to something I read somewhere on these boards last time I visited, I dug out my TENS unit. It made living through yesterday's EVIL CH attacks possible. Never would've occurred to me, had I not read it here. THANK YOU! Sorry this is so long, I tend to go on & on when someone will listen...(and no one is interrupting me! [smiley=laugh.gif] ) |
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Title: Re: Need to have someone to talk with... Post by BobG on Feb 5th, 2006, 5:29pm Hey cynner, talk as long as you like. You sound like a true cluster sufferer. We all have stories that mirror yours. Your experience with topomax (aka doppymax) has been repeated many times. Have you tried verapamil? Oxygen instead of the TENS machine? |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 5th, 2006, 5:53pm TY for the reply and the support... I am due to see my Neuro next month, but I am gonna' try and get in sooner, because things have been so rough the past few weeks. I saw her right before I had surgery in November. (Hysterectomy w/ removal of 1 ovary- maybe this is factoring in?) Gyn sez I am in very ealry menopause; since before surgery. I have had menstrual HAs for quite some time, and hormonal imbalance, etc. I can't help but think there is some connection there somewhere... [smiley=huh.gif] <Sorry to all you males for girly details, but perhaps it is relevant. Guys have certain hormones, too! lol) I have read with great interest about the use of O2 on these boards. I am definitely going to ask Neuro about it. I want off the Topamax, I think. We tried rearranging my dosing to All-At-Night, and it helped a bit, but I still feel like a bumbling fool many days, and on my best day only half as sharp as I used to. I will ask about the verapamil. TY I see a lot of you use Imitrex. I tried it a long time ago, but due to the heart palpitations and constriction feeling- danger of heart attack- it was decided that I should avoid it. The Maxalt does ok for migraines, but any other suggestions for CH? I can't take any NSAID or aspirin type meds due to a platelet/clotting disorder, so it does limit my med choices somewhat. Dealing with all the docs and the meds feels like you are beating your head against a brick wall many times. And let's face it, we do enough of that as it is... :'( Oh, BTW, Linda, I clicked on the link, but I got a sign-in, pw req'd screen, and so I can't get in...Help? |
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Title: Re: Need to have someone to talk with... Post by BobG on Feb 5th, 2006, 5:59pm Neuro next month? That's a long way away. Can't he/she see you sooner? Sometimes these headaches are referred to as suicide headaches. Maybe you can call the neuro's office and toss that name out. Might get their attention. |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 5th, 2006, 6:04pm LOL, yeah, I plan on calling tomorrow. Gotta be careful, tho. You say the "S" word too loud here, and they put you in the hospital (and I don't mean the medical one!) to protect you from yourself! Believe me, I Know! :o (Long story, I'll save you the details here...) |
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Title: Re: Need to have someone to talk with... Post by shenke on Feb 5th, 2006, 9:49pm I'm now on day 16 of staight attacks. Haven't sleep more than 3 - 4 hours each night. Too scared. See thats when my attacks occur, only when I go to sleep. My doc put me on prednisone for 7 days ..got to where I only had one CH a night, not so bad, I guess. Then, day 8.. 3 CH through the night... I was in hell... Husband not real helpful. Was also taking topamax and it's making me crazy. Numb, tingly, shaky, confussed.. Now he has added lithium. Left house for the weekend, to get away. Needed time. My boss loaned me his computer, this is my saving grace and everyone here. I don't know what I would have done without this support. Have a great friend at work also. 2 attacks a night now. Feels like someone has cut my brain open and poured salt in it. Then...cut it up with a razor...oh like yall really need that right!!!! Try to stay awake so the beast won't return. I know now what hell must fell like.. Some nights I sit here and fell sorry for myself and wonder how many more days I can take of this. Then I read others stories...sometimes I cry, and sometime you guys even manage to make me laugh. I don't know how, but yall do. I just love yall. I've been to the chat room too, no complaints from me here....just wish I would have found it sooner! AKA SAH while in chat PS Do you know how many typos I had to correct,meds ....YUCK >:( |
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Title: Re: Need to have someone to talk with... Post by shenke on Feb 5th, 2006, 10:00pm Well, that was rude of me,didnt even say hi to cynner68, WELCOME :D This place is great!! Sheila |
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Title: Re: Need to have someone to talk with... Post by Dragnlance on Feb 6th, 2006, 8:35am Hi Sheila, I understand the feeling about the drugs. I was on 4 different ones at one time, and I quit taking them 3 years ago. Quite honestly, I didnt see any help other than to fog out my brain. I hated not being able to think. I also understand the fear of sleep. Yesterday, the monster clawed my brains for 9 straight hours. I showed my wife this website, and after just a couple moments of reading the front page, she looked up, wide eyed and exclaimed, "thats you, they are describing what you are going thru.." Maybe show your husband Simon's letter, or even just the front page of CH.com. Some things that I do to help, is a really hot shower, usually as hot as I can stand. An herb tea called "ThinkO2". Atomic Fireballs can sometimes distract, just a little. Oxygen is reguarded as one of the best treatments, but does not always work. For me, when I could afford it, (I have always stated that my pain scale went to 14) I had to be over pain level 8 to get any benefit. (usually it reduced the pain by half). It is amazing to me, the people that are here at this website. Like you, I wish I would have found this sooner. |
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Title: Re: Need to have someone to talk with... Post by BobG on Feb 6th, 2006, 12:31pm Hey Sheila, That topamax seems to make everyone nuts. Will your doc change you to something else? Verapimil might be a good choice with or without lithium. But, don’t go by what I say, I’m not a doctor. Sheila and Lance, To help get thru the night a lot of folks are taking Benedryl (sp?) or melatonin. It keeps you from entering the REM sleep mode where the devil lives. |
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Title: Topamax.. Post by Richr8 on Feb 6th, 2006, 1:04pm ..I am coming off cycle right now and in the throws of Topamax. I am a mental wreck. I've convinced my Neuro to take me off, but she doesn't want to start weening me off of the Top until my Pred taper is done. Some of the symptoms I am experiencing are: Listlessness, confusion, inability to focus, cognitive difficulties, somnulence, staggering gait, depression, uselessness, etc. I realize some of these are, or could, be attributable to the long period of sleep dep I am recovering from and general inactivity, but I have been sleeping for a few days now and these things are persisting, so i suspect that these side effects are directly linked to the Top. Anyway, those are my observations so far. Rich |
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Title: Re: Need to have someone to talk with... Post by imnotbub on Feb 6th, 2006, 3:22pm I used to be afraid to sleep myself. You have to sometime, so you might as well try. When 'he' comes, 'he' comes. Any little bit of sleep you can steal you should. At least that's my [smiley=twocents.gif] |
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Title: Re: Need to have someone to talk with... Post by FramCire on Feb 6th, 2006, 4:27pm Sorry to hear your experience. I know what you are going through. This cycle I was having HAs at 6pm, 10pm, and 1 AM. Each one was lasting almost 2 hours and I had the wrong O2 mask so it wasn't working. I couldn't fall asleep until my 1AM HA went away and that would put me to sleep around 3:15am give or take 20 minutes. Then I'd wake up when my kids woke up (6am-7am) and that was my sleep schedule for a LONG time. now Im on 480 mg of Verapomil (2x240) and 9 mg of Melatonin, along with O2. I have been able to sleep from 12:30am (or so) until 5 am (Id just wake up, no HA) and then fall asleep again until the kids woke up. Anyway, it CAN get better even while in cycle! Keep your spirits as high as possible and I would call the new Nuero every day (or other day) and ask about filling a cancelation. I got in with the HA specialist I saw the same day I was reffered because of a cancellation. (this is a very good thing to do with any Dr you can't get an appointment to see - people cancel almost every day, if you hit the timing right, you can fill that spot.). Anyway, my prayers are with you for PF years ahead! |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 6th, 2006, 4:42pm Hello again! Thank you all for the warm welcome and support and suggestions! Some good news to report. My hubby is a recently retired paramedic, and after I read him some of the info here about O2 use, we went digging in the closet, and, sure enough, a full tank of 02 and a 15lpm valve and a mask! HAPPY HAPPY! I have new armor for my next battle with dragon! (The Dragon in Mommy's Head is what my 6y.o. calls the HAs. :'( ) Wasn't able to get a new appt. with my neuro today, but I am gonna try tomorrow. Definitely gonna ask to get off the Dopamax... Taken Benadryl the last 2 nights and finally gotten some blessed sleep! 2 whole days PF! :D So very sorry to hear about others who are in their personal hell at the moment...hold on to the knowledge that even a dragon as big and bad as ours will get tired and nap eventually...Till then, we'll keep looking for better weapons and armor! |
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Title: Re: Need to have someone to talk with... Post by FramCire on Feb 6th, 2006, 7:18pm cynner: Make sure the mask is a non-rebreather. (SEE LINK TO THE LEFT). I had the other mask at first and it didn't work very well. The right mask and O2 makes a HUGE difference. E-Double has the link but there is an awesome article you should print out before you go to any doctor for your CH. I read it and my HAs have been much better on Verapomil and Melatonin. (***anyone that has the link please copy on this thread***). Congrats on 2 days PF. May the 2 days become 2 years and then another 2 years...........etc. |
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Title: Re: Need to have someone to talk with... Post by shenke on Feb 6th, 2006, 8:53pm Hi again everyone...back home now. Went to the doctor today and my husband went with me. It was a very emotional time. He took me off the topamax, still taking the lithium..last night was PF, kind of...slept for the first time for 4 1/2 hours, woke up at 4 am & felt nothing, sat up in bed and cried. Couldn't believe the beast didn't wake me. Then about 4:30 I felt it, did a imitrex inj.(use the imitrex tip on the left... only 1/2 of the injection) and it never escalated...I am so thankful. I think about everyone here throughout the day and night. I am hopeful once again and know I will start feeling better once these meds wear off. If means so much to come back and see that someone cares. Thanks once again. PS Husband is pulling through, rreally new he would. Sheila |
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Title: Re: Need to have someone to talk with... Post by FramCire on Feb 6th, 2006, 9:51pm Thats AWESOME!!! A PF night is sooooo nice. Also, it is great to have a spouce that can be there for you. Congrats! Your doctor took you off of Topomax, are you tapering off or were you at 25mg/day? I was told to taper off (100mg a day down to 50 to 25) |
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Title: Re: Need to have someone to talk with... Post by shenke on Feb 7th, 2006, 8:13pm Yes, I did taper off to 50mg, 25 mg tonight, then none tomorrow. And my PF nights didn't last long, had two CH attacks last night :-/, Just on lithium now, 300 mg every 8 hours. Day 20 with so little sleep. Some days I don't know how much more I can take. I get so tired, but don't want to go to sleep. I come here to visit though and always feel better. Thanks for your replies. Sheila ::) |
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Title: Re: Need to have someone to talk with... Post by FramCire on Feb 7th, 2006, 10:03pm I'm glad he took you off of Topomax before you hit 100mg per day. I don't think I have recovered yet from it. I reread the thread and you didn't mention O2. Do you have it and if not GET IT! Have you tried a high dose of Melatonin? YOU WILL MAKE IT THROUGH THIS. Your body will adapt to the lack of sleep (mine has). I know it is tough to believe, but you will make it through it and more PF days are ahead. |
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Title: Re: Need to have someone to talk with... Post by imnotbub on Feb 8th, 2006, 3:50pm Just let me repeat. Sleep when you can. Even an hour is better than none. I had one cycle go 8 weeks or so and I tried to avoid going to sleep in the beginning. I still battled and was even more tired. Try sleeping sitting up, it reduced the severity of the attacks for me. |
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Title: Re: Need to have someone to talk with... Post by Dragnlance on Feb 8th, 2006, 4:30pm Benedryl works too. Everyone is correct, and as a chronic, I can swear to it, grab sleep when you can, even if it is 1 1/2 hours here, 2 there, get it. YOU WILL MAKE IT. We are HERE for YOU. We know what it is!! Trust us. You will Survive!!!! |
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Title: Re: Need to have someone to talk with... Post by djpaynesr on Feb 8th, 2006, 9:29pm Hiya everyone :) I'm new here too. I've been dealing with the Beast for 15 years though. I am lucky enough to have the VA pay for my oxygen for 5 years so I've had plenty of time to experiment. ;;D The best thing I've found to do is on one side of the mask there is a hole covered by a flexible disk to make it a one-way valve. The other side doesn't have a disk. I've taken a disk from another mask and covered the hole that was open. This makes sure that I get 100% oxygen. With a really bad one it takes about 15-20 minutes to get any relief and 30 minutes for full relief. I generally take Trex (when I have it) and then take O2 until the Trex kicks in 5-7 minutes. This takes the edge off and keeps the Beast from getting any worse until the Trex kicks in. Last year I was in the middle of a horrible episode. I went from 1 yr. PF to 5-6 attacks a day within a week. I was caught completely unprepared. I ended up spending a week in the hospital while my MD put me on IV 'roids. I was an absolute mess. (While I was there I had a nurse try to stop my from turning my O2 up to 15 l./ min. That is how unprepared the medical community is for these things.) Anyway, that is when I learned about DHE or dihydroergotamine. This works like Trex but it's not as harsh. It's also a generic, although a very expensive generic, so some insurance companies may tolerate it better than Trex. Cynn, nice to meet you. I wish it was under better circumstances:) You'll get through this. Together we will all help each other. |
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Title: Re: Need to have someone to talk with... Post by djpaynesr on Feb 8th, 2006, 9:37pm One last thing, Ambien, Ambien, Ambien. Especially if you have an abortive. Take the Ambien, go to sleep, wake up, take the abortive and go back to sleep. Works great for me. I know I probably don't have to say this because of the Beast but I'll say it anyway: DO NOT DRINK AND TAKE AMBIEN You will have animated and highly functional sleepwalking episodes. I don't and have never had a problem with sleepwalking. Drank one beer and took an Ambien and almost burned my house down and don't remember a darn thing. There are stories on the 'net about other people that have taken it after drinking, actually driving their car and not remembering. That aside, Ambien does work wonders for me. |
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Title: Re: Need to have someone to talk with... Post by shenke on Feb 11th, 2006, 10:08am Hey again everyone - Went back to the Dr. Fiday.. he left me on my lithium, and added verapamil (120 mg every 8 hours). I asked him about the melatonin...he wrote a Rx for sonata ( has fast onset, but short duration ) What do yall think?? I have to get up early for work -so he thought this might help relax me to go to bed. I asked about oxygen, he said if imitrex works keep taking it. I do have residual pain afterward though or "shadows" throught the day...asked if I could take excredrin migraine - he said ok. Wants to give these meds another week or two and if cycle doesn't break, he will call a neurologist. This is day 23, want to go back to the hotel. Don't want to be a wife or a mom right now. Function ok during the day at work because I can stay so busy. (esp since I'm off the topamax - which made me insane & stupid) Just want this to be over. Sheila |
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Title: Re: Need to have someone to talk with... Post by E-Double on Feb 11th, 2006, 10:34am Go with the melatonin!!!!!!! No script necessary. As far as sleep meds go that are supposed to be good. I was perscribed Roserem yet never filled it. Go with melatonin! Why wake up and abort if you can prevent ;) |
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Title: Another vote for Melatonin. Post by Richr8 on Feb 11th, 2006, 10:46am I had huge sleep issue while on my Prednisone taper and tried many prescription sleep aids including: lerazpam, temazipam, lunesta, and ambien, none worked. After just two days on 6mg of Melatonin I was getting 6 hrs a night. My Neuro ok'd the melatonin and the Excedrin migraine which worked for me on persistent shadows. A caution on any OTC meds though, be careful as overuse can lead to rebound headaches and other health issues as infdicated in the side effects. Rich |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 12th, 2006, 10:59am Hello again... Just wanted to say thank you once again! Thought this cycle was over, actually had 4 PFD, I was dancin' in the streets! But, alas, the dragon was only on a coffee break...He came back with a vengeance and here we go again. >:( Based on my reading here, I went out and got some melatonin. Sleep~ What a glorious thing! Getting about 6 hours of peace before the dragon nudges me awake the past three days, but I'll take all I can get. Got the 02 working today. After about 10 mins, I felt human again. Amazing is all I can say! I never woulda' known had I not crawled in here a couple weeks ago. This may be the life-saver I have been searching for. One can only hope. Got a new appt. with my neuro. Going tomorrow- armed with a list of questions and requests. You all have given me so much info and I am soooooo grateful. I can go into this appt. with some hope that things might change. I am sick and tired of feeling like a damned dyslexic, feeble-minded zombie! I am getting off the Topamax (100mg/day currently) and am gonna DEMAND a script for 02, and a change in meds. I've been doing things HER way for a year and it ain't workin'. Time to change attacks. Seems there is more valid, useful info here than in her office. I shall do my best to impart some of your wisdom upon her. Or I will find someone new. Wish me luck! PS. Any suggestions on specific things to tell/ask her? [smiley=huh.gif]I am open to any and all thoughts and ideas. |
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Title: Re: Need to have someone to talk with... Post by Richr8 on Feb 12th, 2006, 11:28am on 02/12/06 at 10:59:50, cynner68 wrote:
Topamax did not work for me either . Some of the things I experienced are listed here: Listlessness, confusion, inability to focus, cognitive difficulties, somnulence, staggering gait, depression, uselessness, etc. I realize some of these are, or could, be attributable to the long period of sleep dep I am recovering from and general inactivity, but I have been sleeping for a few days now and these things are persisting, so i suspect that these side effects are directly linked to the Top. Anyway, those are my observations so far. I definitely will not be trying Topamax again. And go for the O2! It's my primary abortive. |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 13th, 2006, 11:17pm Got to see my neuro today. Sort of a Good News-Potentially Bad News thing... :-/ Good news is she understood and agreed that the Topamax needs to stop. I have been off it for 3 days now (scrip was due to refill, but I opted not to, since I wanted off it anyway). Didn't hurt my arguments any when I kept tripping over words, couldn't remember Dr.s name & had a mild CH hit while I was talking with her. Didn't take her long to reach for the Rx pad and change my meds. On the advice of many here, I asked about Verapamil and she did prescribe for it. She also gave me a scrip for O2! ;;D The bad news in this visit was that it was immediately followed by yet another MRI. I've been having some pretty intense and troubling episodes of numbness and confusion, etc. with this recent bout of HAs. She is very concerned that I may have had-be in danger of having TIAs &/or a stroke. If that's the case, of course, all the triptans will be out of the question for me -for good. :( So next step is blood work to test for all kinds of stuff and waiting on results of all these tests. I hate the waiting. So here I sit, scared to death while trying to "stay calm and avoid unnecessary stress".... Yeah, right! I know I am new here, and relatively unknown, but I hope that you, fellow victims of the Dragon, can find it in your hearts to take just a moment of your PF time to think a good thought for me. I need all the positive energy I can get right now. And now, I am going to grab some melatonin and a big glass of water and crawl into bed and hope I have a sleep-filled but dreamless night. The waiting can wait- I'm tired... |
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Title: Re: Need to have someone to talk with... Post by FramCire on Feb 14th, 2006, 12:01am CYNNER: I just said a prayer for you and I will try to remember to keep praying for you. I do have 1 question. I was told to taper off of Topomax from 100mg to 50 mg to 25mg to 0mg (each step for 1 week). I wonder if the quick stoppage could cause you problems. I am not a doctor, so I don't know what the reason is for a taper. Also, I have only used triptans 2 times over the last 4 weeks or so, and I only did it to try and sleep a few more hours (they didn't work anyway). Fighting the beast can be done without triptans, so if you can't, don't fret. There are still other things you can try. With Verapomil...... it didn't have much effect for me until I upped the dose (with my doctors consent) to 480 mg (2x240), If your dose is smaller and it isn't working after a while, talk to your doctor about upping the dose. With all of this said, I'll pray for you PF or not. Your situation is too important to wait for some PF moments to say a prayer. If there is anything you need (especially in the prayer department) please shoot me a PM (or on this thread). I also have a medical advisor I can bounce questions off of if you need. |
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Title: Re: Need to have someone to talk with... Post by Dragnlance on Feb 14th, 2006, 8:40am Cynner, You have my prayers! [smiley=hug.gif] (fingers crossed too!!) I hope all is well, and please keep us informed. Dragnlance |
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Title: Re: Need to have someone to talk with... Post by Richr8 on Feb 14th, 2006, 5:07pm on 02/13/06 at 23:17:11, cynner68 wrote:
I had the same experience with Topamax though I would add the confusion and numbness to the Topamax side effects as well. I hope things start to improve for you soon. Rich |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Feb 14th, 2006, 11:32pm Thank you all for your kind words and support. I will let you know what I know when I know it... ;) As for the tapering off the Topamax, I asked my Dr. about it, but she said that since I had already been off it for a couple days, there was no need to restart just to decrease dosage... I dunno'. I am so glad to be off of it I will just deal with it as it comes up, I suppose. Started the verapamil (120 mg/day) tonight. I'm keeping positive thoughts that this is gonna be what I needed and things are gonna get better real soon. I know it can take a while to take effect. I'm as prepared for no preventative for a while as I can be. Got my 02, and all my digits crossed! I will see the doc again in two weeks, so things-and dosages-may change then. Again, thank you all for the thoughts and prayers. It really does help knowing that there are people out there somewhere that have a true understanding of the pain, fear, frustration and confusion I am going through. I find myself already thinking of this place and all of you as an integral part of my life and the fight against the Dragon. Wishing you all many, many PFDAN! |
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Title: Re: Need to have someone to talk with... Post by Dragnlance on Feb 15th, 2006, 9:06am Here's hoping last night was a better one for you!! :) Dragnlance |
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Title: Re: Need to have someone to talk with... Post by cynner68 on Mar 13th, 2006, 12:35am Just wanted to stop in and update you on things... I haven't posted in almost a month...Because HAs have been close to the last thing on my mind! ::) I have only had three or four attacks since I was here last. The verapamil and melatonin combo seems to be working wonderfully for now! The 02 and maxalt are there for me when the dragon starts growling, and so far, I have been able to keep it from reaching the horrible, screaming, torturous levels I was at a few weeks ago. Maybe it's coincidence- maybe I am just finally breaking out of this cycle, I dunno, but it has been as close to a miracle feeling as I have had in I-dunno-how-long. Good news is that my MRI showed no new lesions. Bad news is that the ones I have aren't going away. :-/ My blood work came back not so great, though. My Neuro has now referred me to the hematologist and the rheumatologist. Levels on a few things were way off. And the big news that came out of all this was that there is a very good chance I have Lupus. Talk about kicking a girl when she's down! More tests and more questions... Think happy thoughts...Think happy thoughts... (It's not working... :'( I'm very scared right now... ) |
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