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Title: sleep Post by headcrack39 on May 20th, 2006, 3:30pm gonna go mad if i dont sleep get night time attacks was woken at least four times during last night been forcing myself to keep awake until gone 2am then trying to sleep lightly always afraid to close my eyes cause i know as soon as i drift off im gonna get woken by the pain and end up jumping out of bed had them 4 weeks so far just sit here on my bed most nights drinking cups of black coffee feel exhausted cant wait until my cycles over gonna sleep for a whole week |
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Title: Re: sleep Post by pattik on May 20th, 2006, 3:47pm Do you use O2 to abort? If you use it and it's successful, then you could possibly skip the caffein and try to get some sleep in between. I found that taking Benedryl (25 mgs) was enough to help me get back to sleep. It won't help you avoid the hits, but even the sleep time in between is better than none. You need to try to not fear going back to sleep. If you have an abortive that works, that can remove a lot of the fear. Sleep deprivation is almost as destructive as the attacks themselves. |
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Title: Re: sleep Post by headcrack39 on May 20th, 2006, 3:54pm been getting clusters since my mid twenties 39 now and only got diagnosed around 5 years back only ever taken verapamil 80mg three times a day would like to try something to abort the attacks guess i better get back to my docs to inquire about the oxygen |
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Title: Re: sleep Post by pattik on May 20th, 2006, 4:00pm Check out the O2 link on the left. Many of us here have a lot of success with it, but you need a regulator that goes up to 15 LPM and a non-rebreather mask. |
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Title: Re: sleep Post by Redd715 on May 20th, 2006, 4:06pm Melatonin 6-9 mg 1/2 hour before bed helps many stave off night hits. Personnally, I had the best luck with a cocktail of Melatonin and Benadryl. 6mg Mel and 50mg Benadryl. Your Verap dose ...talk to your doc about tapering up in the dose untill it starts to actually be useful. That dose of 240mg daily is awful low. Abortives, O2 is a very safe one, and effective for about 75% of sufferers, but you need to do it right. Non-rebreather mask at 12-15 lpm. Start sucking it ASAP when you feel it coming on..can abort the hit in 10-15 minutes in most cases. Ask about imitrex injections for times when you can't be near an O2 tank. There is a way to streach the doses to abort more attacks without pissing off the insurance company or your wallet. Med cocktails isn't unheard of either, combination of Verap and things such as lithium, topomax, zonegran, etc. May want to also ask about a prednisone taper while you are upping the verap to give you a break. Keep asking... you'll get plenty of ideas. |
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Title: Re: sleep Post by BobG on May 20th, 2006, 4:07pm Hello H'Crack, Welcome to the board. Sorry to hear you're hurting. The O2 is used by many many people with good success. It is probably the safest and cheapest abortive out there. Be sure to ask for a NON- Rebreather mask. There's a 'oxygen info' button on the left side of your screen. Good information there. You might ask your doctor if your verapamil dose, 240mg a day, can be increased. Many people have said they ramp up to 400 or 500mg a day before finding relief. A few are at 700. But don't do it on your own. What about abortives? Imitrex or zomig? I have spent many nights sleeping in the recliner chair. Sleeping with the head elevated helps with the night time attacks. Good luck to you. Let us know how you're doing. |
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Title: Re: sleep Post by E-Double on May 20th, 2006, 4:21pm 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 '04 .....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..... |
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Title: Re: sleep Post by headcrack39 on May 20th, 2006, 4:28pm thanx for all the help have a problem with the verapamil being it reacts with another medication i take have to stop taking the other thing before they will even prescribe me the verapamil and tho the headache clinic that diagnosed me put me on 80mg my doc halfed the dose to 40 ive been taking two pills three times a day another thing i find is i get relatively short lived attacks that last anything from 10 mintes to half an hour so dont know if all treatments will get the chance to be effective only just found this site today but after seeing the kids section kinda feel like i dont really have much to deal with must be so awful for a little one to suffer so much pain my heart goes out to all the little sufferers |
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Title: Re: sleep Post by BobG on May 20th, 2006, 4:36pm I know what you mean about the kids section. I try to read it but can never get through even one thread. Always have to find a tissue, if you know what I mean. May God bless our little brothers and sisters. |
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Title: Re: sleep Post by Redd715 on May 20th, 2006, 4:36pm Attacks of that short duration may not actually be CH but possibly EPH (can't spell it for the life of me but someone will come and do it for me) Indomethacin (again spelling) is damn close to 100% effective fore preventing this HA type. Have you ever tried it? EPH pain very very similar to CH but never lasts as long. If you haven't tried it, it's worth a shot...certainly can't hurt. What other meds are you on, script or not? Pegg |
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Title: Re: sleep Post by BobG on May 20th, 2006, 4:43pm Prgg, do you mean CPH, Chronic Paroxysmal Hemicrania? Or, I guess EPH would be Eposodic PH. Heck, I don't know. |
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Title: Re: sleep Post by Redd715 on May 20th, 2006, 4:46pm on 05/20/06 at 16:43:42, BobG wrote:
Episodic is what I meant Bob... Here is an artical I found it may help .... http://www.answers.com/topic/paroxysmal-hemicrania |
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Title: Re: sleep Post by Redd715 on May 20th, 2006, 4:50pm Just a reminder.... I'm not a Doctor I just play one on TV...I mean in the Bedroom... I mean ..... j/k... |
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Title: Re: sleep Post by headcrack39 on May 20th, 2006, 4:55pm no quite sure they are clusters just deal with them different then most dont find the throwing yourself about helps much at all thru trail n error i worked out for me it is best to either kneel on the floor or sit with my head in my hands on my bed and more or less phsyche the pain away cant close the eye the pains radiating from as it just gets excruciating have to try and keep my eyes open thru the whole attack and usually as long as i dont freak all of a sudden it dies down bad days i just get a numb dull ahe in my temple |
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Title: Re: sleep Post by Redd715 on May 20th, 2006, 5:03pm Please read the article, and see if this sounds alot more like your headaches and get back to us. If you can find relief from this med, (and it's really quite inexpencive) you've got it licked. |
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Title: Re: sleep Post by Gator on May 20th, 2006, 5:16pm If I'm not mistaken, you can't get Melatonin in the UK, at least not OTC. Here is the url for OUCH UK. They have information on CH knowledgeable doctors and treatments that are available in your area. http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD They also have a telephone number you can call and talk to someone. Here's the url to the contact page with the phone number on it: http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_contacts.cfm Here is a link to some non-prescription treatments you might try: http://www.ouch-us.org/chgeneral/nonmed.htm pattik is right about the sleep thing. Lack of sleep can bring on extra hits for a lot of people. Some sleep is better than none, even if it is broken. Definitely get the O2. 15lpm x 15 minutes via a non-rebreathing mask. I use the Clustermasx (http://homepages.nildram.co.uk/~tritech2/clusterx/index.html), developed by a clusterhead there in the UK. I can abort an attack in half the time of a regular cheap, flimsy NRB mask. If you always get awakened at 2am, set your alarm clock for 1:30 and get up and be ready when the hit comes. You can have all your arsenal ready to bring to bear on the attack when it hits. Another thing you can do is try "Power Napping." A 20 minute nap can refresh you as much as several hours of sleep and you are less likely to get pummeled by the beast in that short a period of time. |
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Title: Re: sleep Post by headcrack39 on May 20th, 2006, 5:40pm not convinced about the cph but will bring it up with my doctor and the migraine clinic that diagnosed me will try the other links aswell |
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Title: Re: sleep Post by BobG on May 20th, 2006, 6:05pm Click on this linky-thingy and check the chart http://www.ouch-us.org/chgeneral/hacomptable.htm |
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Title: Re: sleep Post by headcrack39 on May 20th, 2006, 6:20pm theres similar symptoms in both types of headache will get back to my migraine clinic just to be sure can feel an attack coming on as im typing just went all hot n sweaty like i was over heating now can feel my temple burning |
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Title: Re: sleep Post by headcrack39 on May 20th, 2006, 6:21pm and lol@ linky thingy |
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