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Title: I am so exhausted Post by IamAngel on Aug 18th, 2005, 10:36pm This set of CH's is really taking its toll on me. I am over 2mths into this cycle, with no relief in sight. They seem as strong as ever. I am on a pred. taper, and was (keyword was) on Trex but I just lost my health insurance and no way can I afford $700+ a month for 6 shots. So for about 2 weeks now, I have been riding each headache out...and I'm almost at my wits end. I have 6 a day, then maybe skip a day, then 2 or 3 the next day...usually get hit the worst at night, just after falling asleep. I am so tired. I'm a mommy to 4, 3 are in school and a 1 yr old that keeps me going full blast all day. I feel like I have no strength left. My kids keep begging me to go out and play with them, take them for a walk, but I am just so worn out... or being hit with a CH, that I can't. I get so angry at how much I miss out on because of the CH's. I have one coming on right now and I'm trying to keep my sanity in check by venting here....thanks so much for listening, I feel like I'm loosing it... :'( |
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Title: Re: I am so exhausted Post by E-Double on Aug 18th, 2005, 10:45pm You're not gonna lose it....you have found a home where everyone here "gets it!" Since 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. Since $$ is an issue you might want to take these into consideration. Both are substantially cheaper than imitrex: Oxygen 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 Plenty to learn here and wishing you luck on your journey! Eric |
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Title: Re: I am so exhausted Post by jcmquix on Aug 18th, 2005, 10:59pm Hi IamAngel... Sorry you have to be here, but you are in the right place for CH... About the health benifits, if you have no insurance, you can contact GSK (The makers of TREX here): https://www.pparx.org/Intro.php Its a program to help you, if you can not afford the TREX, if you still want to try and get it... They do move slow, but you can get started and you may need it for the next cycle... Also check the links to the left.. The one for TREX works great, I modified the method a little, read this post: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1124329956 Have you tried O2 before ??? Its cheap, if you get a script from the Dr, make sure the script reads exactly what the info says. Copy it and take it to your Dr. Demand the O2, 90% of the CH suffer's here say it works to Abort the HA and I am one of them. In the mean time you might want to read the Threads on the Alternative Meds, alot of people here have found relief with them. If you need somwhere to Vent, ask a question, or just a sholder to lean on there is alot of Support here, there is some comfort knowing that you are not alone, the lights are always on here 24/7/365. I hope this all helps you, Welcome aboard.. PFDAN's to You... Charlie |
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Title: Re: I am so exhausted Post by jcmquix on Aug 18th, 2005, 11:05pm Listen to what E says.. He is my Support & Teacher... PFDAN to You !!!! Charlie |
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Title: Re: I am so exhausted Post by gymnasticsmommy on Aug 18th, 2005, 11:22pm I am ver new to these ch, however I do understand your troubles with the children. I have seven daughters:14, 13,the twins are 11, 7, 3, and 11 months. I too am frustrated that I am missing so much. What I do is pile them all on my bed with me and my husband and talk about our days. The older ones do help out a lot with the younger ones, especially when one hits. The little ones get scared when they see me. Do you have any friends or family neer by to help? My mother in law takes the kids for a few hours in the daytime since thats about the only time I can sleep. A few good hours a day helps so much! If I was close I would definately come give you a hand. I am not one who likes to let my kids watch tv very much but I have also resorted to renting them a couple of movies when I am just dragging too much. The hardest part is my baby is learning that she can talk and is into the squeeling phase. Is yours? No way I know of to help that.Try to keep your chin up. I know I am not much of a help for ideas because I am new to this, but I hope hearing from someone at all in this situation help a little! mommy |
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Title: Re: I am so exhausted Post by maffumatt on Aug 19th, 2005, 6:30am Hang in there girl, we all know where you are at. Take care of those babies, but don't forget yourself. Pulling for you............ |
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Title: Re: I am so exhausted Post by marlinsfan on Aug 19th, 2005, 8:41am Hi IamAngel, Listen to jcmquix and Ex2. They are both right on the money. Have you tried Oxygen? It works great for me and many others. Haven't taken trex since I started using it. You can buy yourself a tank and regulator on e-bay, and get a welding shop to fill it for you if you cannot find a med supply store to fill a doctor's script without insurance. Also, have you tried excedrin? The caffeine in it does help me SOMETIMES, not ALWAYS. Before I found O2, when I got hit 3-4 times/night, I couldn't do the trex every time so I used excedrin on many of those. Again, listen to e-double. Melatonin has worked great for me too. It does take a few days to ramp up, but stick with it. Hang in there. PF Wishes. |
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Title: Re: I am so exhausted Post by lionsound on Aug 19th, 2005, 8:50pm on 08/18/05 at 22:36:47, IamAngel wrote:
I've felt this way. I have two kids..expecting my third and sometimes I get so mad at myself for missing time with them. It's natural to think that way. I don't know how you could ba a caring mom and not think those kinds of thoughts. But you need to remember that you are there for your kids even if you don't feel like you are. They love you for YOU not for your CH. talk to your doc. try the melatonin, try the 02(possible to get it without insurance). try ice on your head/neck.. frozen bag of peas works great alternating between hot and cold shower standing in front of the AC or fan blasting breathing in some steam from a shower, or hot water filled sink with a towel over your head. You are not losing it...you are not alone.[smiley=hug.gif] Be well and PF!! -lionsound |
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Title: Re: I am so exhausted Post by Redd715 on Aug 19th, 2005, 9:04pm I'm a mom too, but fortunately my two are teenagers and have become my greatest supporters. They ahve delt with me and my head for years, long before I had a correct DX so they are very used to it and I stopped feeling guilty about something I couldn't control a long time ago. It wasn't easy but it can be done. They both are members here and post and have become part of the greatest family of CH sufferers and supporter's you'll find anywhere. E-Double is right on the money. And also talk to loinsound she's a great gal and has alot of practical Mommy advice for you with her kids being younger and in the same boat. Sorry you are going threw this., but you've found a place to get some great advice and tons of support. Redd aka Pegg |
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Title: Re: I am so exhausted Post by IamAngel on Aug 19th, 2005, 10:47pm Thank you all so much for the support. It really means alot to be able to come to a place where people understand exactly what I am going through. I've had CH for about 12 yrs now, and for so long I have felt like an alien, like I was the only person out there with this freak condition. I'm sorry that we had to meet under these conditions but I am glad I found you guys. I finally got some sleep last night at around 4 am. I had the CH for about 2 hrs....I am hoping that I get a break tonight, I am too tired to deal with another one. I see my doc Monday, and we've already talked about the oxygen, so I'm hoping he is going to give it to me now since I cant afford the trex anymore. |
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Title: Re: I am so exhausted Post by lionsound on Aug 20th, 2005, 10:56am Hi :) It might be helpful to print out the info about O2 and bring it to your doctor on Monday. That way you get he right script. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm If you still find that the O2 is beyond your budget come back here and ask how to get welders O2. Please let us know how it goes at the Doctor on Monday. PF's for you! -lionsound |
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Title: Re: I am so exhausted Post by Salvelinus on Aug 21st, 2005, 4:53pm Hang in there, angel. We do miss a lot, don't we? On the other hand, I think we make the times we do have a lot better, knowing that quality time is limited. Some people waste so much valuable time that could be spent with their children, they don't even realize it. Make those times with your kids very special, and they will be OK. PF prayers going out for you right now! Namaste, --Scott |
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Title: Re: I am so exhausted Post by Jasmyn on Aug 21st, 2005, 6:44pm Angel, you're among a lot of Ch mommies here as Red said and even the men here have good advice! ;;D We welcome you with open arms and know that we are all here when you need us! Good luck with the doc's appointment! Get the O2 and Melatonin! Jas ;) |
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Title: Re: I am so exhausted Post by dis on Aug 22nd, 2005, 10:28am I hope you've been able to get the oxygen. If it works for you you will be so happy. It's the best treatment I've ever used. There is no reason for you to suffer with so many new treatments and medications. After 23 years I have finally discovered the benefit of the oxygen and I can't believe how effective it is. It's worth whatever you have to pay for it if it works. Good lucky. Please let me know if it works. |
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Title: Re: I am so exhausted Post by IamAngel on Aug 22nd, 2005, 10:50pm still no luck with the O2. Doc said it would cost me $150 to fill the tank, and with using it at 15-20 lpm I would use a tank up in no time, so I can't afford that route either....he is going to get me free shots from GlaxcoSmithKline, through there program, and he put me on Verapamil. This is the first time for me taking this, does anybody have an approx. cost for this med? I just really hope this cycle is almost over...My cycles usually last 2-3 mths, and this one started the first part of June. Maybe relief is near. I am so weak lately...lack of sleep and just being worn out from the CH's. GMommy, yes, my son is going through the squeeling phase too...but it really doesn't seem to bother me much since I usually get the HA's in the middle of the night. And BTW, thank you so much for your kind words. I have been taking meletonin for around 2 weeks now, but it seems to do very little for my HA's. It does make me sleepy, but I still wake up with a CH not long after falling asleep. The Doc said he may go back up on my pred. But he said he really hates to do it considering the long term effects from steroid use. I've been on pred. for over 2 mths, is that bad?? Thanks for the replies and listening to me vent guys/gals! It really means alot. |
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Title: Re: I am so exhausted Post by RichardN on Aug 23rd, 2005, 12:57am Call up a couple of medical equipment suppliers and ask them what they charge for "E" tank refills (those are the 30" tall green topped 02 tanks you see all over the hospitals and in every doctors office . . . have a little cart. My supplier charges me $10 per tank. I keep seven tanks and never go into a weekend without at least two full tanks besides whatever is in the tank in the cart. You need a 15 lpm regulator (most of us use 12-15 lpm to abort) and a non-rebreather mask (the one with the bag). If insurance won't pay for the regulator, they can be had on ebay for arround $50 (remember . . . needs to be at least 15 lpm) and the masks cost under three bucks. I can kill the beast in minutes if caught in the early stages of an attack . . . .MINUTES and can kill the beast at a KIP 3. If hit at night with KIP 5-6, 10-15 min (rarely longer) and back to sleep . . . . WITHOUT having to endure the KIP 8-10s.. I can deal with the beast if I don't have to "dance" with the bastard. Copy the 02 info from this site and take it back to your doc. If he won't prescribe it for you, get another doctor. 02 IS a recognized therapy for CH, but all too often, it is us, thepatient, who has to educate the doctors about this EFFECTIVE and reasonalbly inexpensive abortive. Seriously, if he won't give you the script, let us know and someone here can probably provide the name of a CH savvy doctor/clinic in your area or there's help here for acquiring welders 02. I've been where you are . . . . you need this. I'm not afraid to go to sleep anymore, and relief is never more than minutes away. Be Safe, PFDANs Richard |
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Title: Re: I am so exhausted Post by TxBasslady on Aug 24th, 2005, 5:49pm Be careful taking too much of the Prednisone. I don't know the dosage your Doc has you on..but long term, it destroys the immune system. What dose of Melatonin are you taking?? When I took it, there were times I had to increase the dosage to stop the nightime hits. There's a few here who also take Benedryl along with the Melatonin. We're certainly not medical professionals....but we have learned alot from trial and error. As usual, check with your Doc and see what he thinks. Good luck... PF Vibes, Jean |
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