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Title: Sleep Apnea & Restless Legs In ClusterHeads Post by Dover on Apr 6th, 2004, 8:51am I have never posted here before, but being a new convert to this wonderful world of cluster headaches, I have done quite a bit of research and now have some questions I hope members of this group can help me with. In addition to CH, do you also suffer from restless legs (an axious feeling that you need to stretch your legs but can't. It happens at night and prevents sleep.)? In addition to CH, do you also suffer from Sleep Apnea? Do you have difficulty sleeping even when you are not in cycle having CH? Have you ever had you prolactin levels checked? Were they high? |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Melissa on Apr 6th, 2004, 9:07am Hi Dover, welcome to the family! In answer to your questions: 1. no 2. no 3. yes, but it's one of my ears (whichever one I'm sleeping on) that seem to "fall asleep" and become really painful which wakes me up at night. It takes at least 5 min before the pain goes away in order for me to fall asleep again. 4. no :)mel |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by aprilbee on Apr 6th, 2004, 9:50am I have the restless leg thing, but its not just at night... |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by echo on Apr 6th, 2004, 9:57am No Did, but has been surgically corrected No Don't know |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Tiannia on Apr 6th, 2004, 10:43am 1. Yes but like April, it happens all day long for me not just at night. 2. Being tested. dont really know if I do have it. 3. I have insomnia bad. Up till about 12-1 every night and then get up to dance at 3 so I am constantly tired, but cant sleep. 4. Dont even know what the hell that is. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Racer1_NC on Apr 6th, 2004, 10:51am Restless legs...... no Sleep Apnea......yes Difficulty sleeping.......at times, yes Prolactin levels.......damifino Bill |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Dover on Apr 6th, 2004, 11:49am It sounds like several have sleep related problems. I have a suspicion that CH is related to sleep problems that throw all kinds of stuff out of whack--or rather some out of whack stuff is throwing the sleep out of whack and making everything worse. Here are my suspicions and I am testing them out and will let you know how they are working. I read a handful of studies that said sleep apnea tends to occur along with restless legs, and then I read a handful of studies that said CH sufferers tend to also suffer from sleep apnea. And that made me wonder if treating the restless legs would help with the CH. So, I went to the store bought a whole bunch of tonic water, which contains quinine, which is prescribed for restless legs (and for malaria of all things). Anyway, I started drinking tonic water like crazy. I got a prescription for quinine--which was a good thing since I was sick of tonic water by that point. Since doing this, I have slept several nights without being woke up with 7/8 CH twice a night which had been the case throughout March. My CHs are still coming but they are now 2-4 range and are one or two a day. I am able to manage them with a half tab of Imitrex and a cup of strong coffee. I was taking 200 mg a day crying for more. If you try the tonic water thing, let me know if it seems to help. Sorry I didn't explain the prolactin thing earlier. Prolactin is a chemical occuring naturally in the body and causes a lot of problems in men. It causes problems for women too but it's particularly troublesome for men if it gets too high. Sex life goes down the toilet, anxiety goes up, cancer risks go up, and restless leg syndrome is more likely. I suspect because CH is something that tends to occur in men more frequently than women, it might be prolactin related. Excessive prolactin makes it so your muscle tissue has an extended refractory period, (not ready to work again), and results in cramping, tight tissue. That made me wonder if prolactin was involved because Botox seems to help and that stuff pretty much paralyzes the muscle tissue in the face--rendering the refractory period pretty much irrelevant. The other reason I suspected prolactin was that drugs like cabergoline seem to have an effect on 5-HT (1D) receptors. That is the same receptor that Imitrex acts on. The impact on this receptor by cabergoline doesn't appear to be direct like it is with Imitrex, but indirect. There is another difference though in that cabergoline has a longer life indirect impact on the 5HT receptor whereas Imitrex acts fast but for a shorter period. My further suspicion is the activity of Imitrex is being cut off by high levels of prolactin. I am trying cabergoline now (and stopping the quinine)but it hasn't been long enough to really make any conclusions. I will keep all up to date on if this works or not. I do know the quinine works for me and would be interested in hearing whether it works for you. You don't really need a prescription. The tonic water works enough to tell you if it is going to work for you. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Superpain on Apr 6th, 2004, 1:52pm I've had "restless leg"... It's not pervasive or often though. Yes on sleep apnia. Not really on insomnia. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by KingOfPain on Apr 6th, 2004, 4:35pm Hi Dover. 1. Yes. Diagnosed. An itch that can't be scratched, is how I describe it. 2. No. Found negative from sleep study (also when above RLS diagnosed). 3. Yes. Chronic Insomnia. 4. No. N/A. Good poll/thread. Thanks. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by FZfan on Apr 6th, 2004, 5:16pm Hello Dover No No No No I have no trouble sleeping at all in or out of cycle. Random thought - If quinine can be an abortive, and if alcohol can be a trigger, would it be possible for a clusterhead to drink gin and tonics? ;;D |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Dover on Apr 6th, 2004, 5:23pm FZan, Is it possible for a clusterhead to drink gin and tonic? Yes. Pour gin. Add tonic. One lime. Drink. Wait for happy giddy feeling followed by headache. I'm in my third day of the quinine thing and today had a 1/2 CH and am right now having shadow. I did not take a quinine tablet this morning but suspect it is still in my system. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by 5-string on Apr 6th, 2004, 5:47pm Hi Dover, Yes,I suffer from restless leg. It started about the same time my clusters started. There are some nights I can't sleep at all because of it. It always starts after I go to bed. ...Mark.. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Dover on Apr 6th, 2004, 6:38pm Mark, It's terrible and it's another area where doctors just blow you off when you bring it up because they know nothing about it. See if your doctor will prescribe you either quinine or Dostinex (cabergoline). Push for the Dostinex over the quinine. It will resolve the restless leg syndrome and I suspect it will stave off the big bad beast. (There's a special treat that comes along as a side effect that I am sure you will enjoy) If the doctor tells you Dostinex is not approved for treatment of restless leg syndrome, have him or her check again. The FDA approved it not too long ago for this purpose. The quinine will work fine but if you have heart problems, it may not be the best thing. If your doc says Klonopin, just say no. Don't live with it. I did and I am kicking myself (and my doctor) for it. Lord knows if you are not having a HA, you should be asleep. No sense in sleeplessness due to restless legs on those special nights when the beast is away troubling someone else. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by floridian on Apr 7th, 2004, 9:05am Prolactin is one of the many things that may be messed up in cluster headaches. Several studies show disruption of the levels, or of the normal patterns (a pulse release at night is normal). This study showed our prolactin levels are abnormally low on average, but may spike when the beast is attacking. Other studies showed no change in prolactin. Quote:
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Title: Cabergoline Post by floridian on Apr 7th, 2004, 10:11am Dover, Curious that you mention cabergoline and do keep us posted on your experience with it. Cabergoline is an ergot alkaloid derrived from ergoline (Lysergic Acid Amide, found in morning glory and hawaiian woodrose and hawaiian baby woodrose). Ergoline and cabergoline are of obvious interest as potential cluster-busters. Below is the only study I could find on cabergoline and cluster headaches - it was sucessfully used to treat unusual cluster headaches that were associated with a pituitary tumor. (Most whacked prolactin levels are not due to tumors, but to poor regulation by the hypothalamus). Cabergoline is useful for treating high prolactin levels from both tumoral and nontumoral causes. In addition to stimulating 5-ht1 receptors (like the triptans), ergoline and cabergoline stimulate 5-ht2A, 5-ht2B, and 5-ht2C serotonin receptors, as well as dopamine receptors. The 5-ht2a receptors seem to be a common link in LSA, LSD, psilocybin and other cluster-busters. Side note: Morning glories and the the woodroses seem to have more side effects than other cluster busters. Nausea is fairly common, and vascular effects (cramping, reduced peripheral circulation) have been noted among recreational users (typical dose: 6-10 baby woodrose seeds). Caution is strongly advised. Quote:
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Jerry_b on Apr 7th, 2004, 2:44pm Yeah, me. I've just been diaged with ch, but the pain is familiar, so I must have had it for years. This is the first time I've had a string of them, though. Doc put me on prednisone. I've been doing verapramil for bp, for a few years, now. Oh, yes, elavil fo leg cramps. I'm on a CPAP machine. I think I ko'd an episode(kip7-pacing) by deep breathing on the machine. Broke one yesterday with water. What about weight? I notice a lot ofCPAP (aka hose-heads) are overweight; and a doctor hinted this caused the snoring. (size 16 neck) |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by floridian on Apr 7th, 2004, 2:58pm My clusters started when I was thin (around 150 pounds, I'm 5' 10"). I have been as high as 200 lbs, but am now just a few pounds above my target weight (around 175). Never saw any relation between weight and clusters. But for some types of sleep apnea, extra pounds do make it worse, so weight could make a difference for some. There have been several discussions about apnea being a trigger or predisposing factor on these boards. You might want to check the archives if you are newly diagnosed and also have apnea. |
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Title: Re: Cabergoline Post by Tiannia on Apr 7th, 2004, 3:37pm on 04/07/04 at 10:11:10, floridian wrote:
Stems of wood rose are ingredence used in makeing incense. I have some currently in my supplies. Is it only in the seed that Cabergoline is found? And was it a tea that she given? or can a teniture be used? |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by floridian on Apr 7th, 2004, 4:10pm Cabergoline is a prescription medicine that is derrived from (but different from) ergoline. It is ergoline that is in the seeds of morning glory and the woodroses. The seeds also contain other ergot alkaloids. I did read that woodrose originated in India, and spread through the South Pacific before being named "Hawaiian." I think the root is used in Ayurvedic medicine, but don't know anything beyond that. Not sure about the stems or whatever they put in incense. Woodrose seeds are less potent than the Baby Woodrose seeds (they are completely different species). 1/2 or 1 Baby Woodrose seed might be enough for a preventative effect. But you should check out the experiences reported at the Erowid site - some people taking as few as 4 seeds have reported very intense experiences. Crushing a seed and soaking it in cold water, straining out the seed pulp, and drinking the water might reduce the nausea. Some of the nausea seems to come from peptide alkaloids (like ergotamine) that are not water soluble. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Gena on Apr 7th, 2004, 4:21pm No yes yes going to be tested. Doc is following this line of thought and treatment. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by joesf on Apr 7th, 2004, 8:46pm 1 No 2 No 3 No 4 No never had it checked. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by HypnoticFreddy on Apr 7th, 2004, 9:44pm I have noticed during cluster headache cycles, the typical night is being awoken by the ultimate beast after one hour of sleep. You are usually in a deep sleep. And it wakes your ass and for me, I shoot me a shot of 'Trex. After 5 min, the beast departs. It is a miracle drug for me. Only those rare nights when I have been hit with 5-7, am I ready to go to the ER. Only happened once. In my recent experiences (my last cycle), is I am up for 20 min, then fall right back asleep. However....I take a powerful anti-pyschotic medication (it is also prescribed for manic depression) called Seroquel. For massive insomnia and anxiety I have been prescribed all the benzo's in the past, and let me tell you something. A lot of doctors do not know this. Seroquel was only FDA-approved in 1997, so it is fairly new. It is an atypical anti-pyschotic. It does not cause all the weight gain like Zyprexa, so it is a little more desirable in that regard too. Seroquel is THE most sedating drug I and one of my best bipolar friends have every taken. So if anything, you might want to suggest to your doctor taking this medication (unless you have little ones you need to tend to in the wee hours of the morning). It has little problems in interactions, etc. It really is more sedating then the doctors know. Just go REAL slow on tapering up. -Freddy |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Opus on Apr 7th, 2004, 11:09pm Yes sleep apnea, got CPAP, hea exploded two months later, restless legs, yes, especially when CPAP not working well, I can sleep any where at any time, bu I never fall asleep when I don't want to. No blood tests. Opus/Paul |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by sgarner on Apr 8th, 2004, 12:56am In addition to CH, do you also suffer from restless legs (an axious feeling that you need to stretch your legs but can't. It happens at night and prevents sleep.)? Yes In addition to CH, do you also suffer from Sleep Apnea? Yes Do you have difficulty sleeping even when you are not in cycle having CH? yes Have you ever had you prolactin levels checked? Were they high? no |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Lizzie2 on Apr 8th, 2004, 1:44am Yes for restless legs. It runs in my family. Definately diagnosed in my family are my grandma, my mom, and me. Neither my grandma or mom have CH, but their RLS is more severe than mine. My mom and I always describe it as feeling like there are spiders in your legs. Sometimes at night, I have to put a pillow between my knees to help because I can't stand my legs touching each other. I don't have sleep apnea. I do have insomnia much of the time. I've been that way for a long time. Never had prolactin level checked that I know of! Lizzie :) |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by sandie99 on Apr 8th, 2004, 7:09am My reply is "NO" to all four. I do have sometimes troubles to fall asleep, but I think it is more to do with stress than CH. Best wishes & loads of PFdays, sandie99 |
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Title: zzzouchzzzdamnzzzshitzzz Post by rumplestiltskin on Apr 9th, 2004, 12:49am I first read about that restless leg thing here at Ch.com...a long time ago...I got it. G's got it. We are fun in bed. I never knew what the hell it was..."mini charlie horses" me thought. We both have screwy sleep patterns. Apnea ...for me maybe. Sex stops G's headaches. It often makes my head hurt after an hour. like indian rope burn...has little effect on my cranium....I know that's like ....for a different thread ...butt i was too lazy to post to both. Our bed stinks too..but i don't dream in colors or smells so it's OK. John and Yoko...that's us. There is some very interesting stuff in this thread...forgive my intrusion. I spoke the truth though. Good grief den |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by tsayswhy on Apr 9th, 2004, 1:44am 1. no----but husband has restless legs drives me crazy he's up some night hours on ends. 2. no 3. no 4. no |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Dover on Apr 9th, 2004, 5:26pm Well from the responses, I would say we have a little higher incidence of restless leg and sleep apnea than the general population (how's that for scientific rigor?). I saw my neuro 2 days ago and she put me on a high dose prednisone to break the cycle. I am continuing on the cabergoline, but I think the introduction of the prednisone kind of throws my little experment a loop. When she said she could break the cycle by Saturday, I thought science be damned sign me up. Anyway, haven't had any HAs at all in the past two days. I am happy. I am very interested in what happens to Gena as her doctor seems to be exploring a treatment aimed at Prolactin reduction. I copied a bunch of studies that suggest this is really one of the culprets for CH. One particularly interesting ones said that CH victims should be evaluated for prolactin secreting pituatary tumors as the symptomology is the same or similar to CH. Thanks everyone for responding. The responses have been wonderful and very intersting. To all those who suffer Restless Legs or Sleep apnea, get them treated. Don't wait. Both of these are very serious conditions for those suffering from CH. Sleep Apnea is especially dangerous as it messes with your heart. (by the way, there was also a study that found cabergoline significantly reduced apneas). |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by buckeyescooter on Apr 10th, 2004, 2:04am You say restless legs...I've always called them the jimmy legs...don't know why. Yes to apnea...mildly so. Was fitted for a sleep device but never actually picked it up. Smart. Never had the blood test....had never heard of it actually. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by floridian on Apr 10th, 2004, 10:58am Quote:
Another term is "jake leg" - during prohibition, there was a patent medicine with lots of alcohol - used for "medicinal purposes only" naturally. It was contaminated with something that affected the nerves to the legs, and caused paralysis or permanent twitches. Several songs like "Jake Leg Blues" were recorded about this. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by helpless23 on Apr 13th, 2004, 8:42am Hi Dover! Well, thank GOODNESS you posted! I just posted a help topic in the General part of the board the other night. My husband is a long time sufferer (chronic) and he has just been diagnosed with severe sleep apnea and he twitches all the time with his legs and punches too. He went for the CPAP machine, but he couldn't breathe with it on - so he doesn't wear one! It's horrible and yes! I think it is common. We just found out in January what he had (CH) - found a good neuro who put him on Verapamil and that's taken the clusters away - but it's done nothing for the twitching. He has always had a problem sleeping ever since he has had the clusters too. I don't know about his levels, never been checked. I wish you the best of luck and lots of PFDAN's! Much Love, Toni on 04/06/04 at 08:51:22, Dover wrote:
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by clavers on Apr 13th, 2004, 3:57pm yes yes no no For the past few months I have been on a CPAP machine for the sleep apnea. I think it helps the CH. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Dover on Apr 15th, 2004, 10:25pm I had my prolactin levels checked, but it was after taking cabergoline for awhile. They were low not high. I still suspect that for one reason or another my prolactin spikes or does something because I know the restless leg thing can get way out of control. Since taking the cabergoline, I have not had one night of the leg restlessness. As for sleep apnea, I bought a cool humidifier. I don't know if it helps or not but it seems to make it more comfortable in the room. Who knows. Since taking the cabergoline, I fell like the apnea is not as big an issue. Nevertheless, I previously order a devise from my dentist that holds my lower jaw out a bit so the airway stays more open. That seems to help too. I would have to say that as of recent, I have had no real apnea complaints or incidents. The other thing I have been doing is working out. Evidently working out helps reduce sleep apnea problems. So, how does that impact the CH? Who knows. I'm on Pred. Will update later. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by mynm156 on Apr 17th, 2004, 7:34pm Hey There, 1.NO 2. Yes. Anyone with any moderate to severe Sleep Apnea will have decrease in oxygen levels that will cause changes in the vessels i.e. Dilation. That could trigger an attack. MYNM156 |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by NYRenee on Apr 27th, 2004, 2:10pm Here is some info about quinine: http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/ a682322.html http://www.friendslab.com/index.html?toc.html&0 http://sres.anu.edu.au/associated/fpt/nwfp/quinine/ Quinine.html I myself occasionally drink tonic water in the summer because of leg cramps/muscle spasms....it does seem to help, but you might want to look at the websites I have posted here because many people have sensitivity to quinine. Also see friendslab.com this website discusses quinine use and detection as it relates to heroin abuse. Could be important information if you are expected to take a urine sample for a job or something. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Big Dan on Apr 28th, 2004, 11:16am 1)... I've only had that happen maybe twice in my life... 2)... Nope... did a sleep study. No apnea, and no tossing and turning. In fact, they had to come and make me turn onto my back after the first 4 hours to get me to try and snore. She said that if it weren't for them knowing I was actually breathing, I could be mistaken for a dead person when I sleep. 3)... I have problems with sleep patterns. I can easily break a good pattern, and it takes me forever to get back to normal. Just staying up too late for one night can mean hell for the next several weeks. 4)... I've had blood tests done for diabetes checks... everything is in the average to below average range.. so if pro-whatchamacallits are part of that, then 'no'... -Big Dan |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by hopefull on Apr 30th, 2004, 11:27am yes yes yes no |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by gills on May 1st, 2004, 8:38am I am not a medical practitioner but I red on this site a couple of years ago that studies have shown the following: CH sufferers have a faulty hypothalymus (spelling?) which is the body's regulator that controls sleep patterns and serotonin levels and blood cell functions. The faulty hypothalymus somehow is the cause of the cluster headaches and until there is a method of correcting the hypothalymus, there will never be a cure for CH's. The only current cure to guarantee not getting another CH is unfortunately a lead pellet. Gills |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by Big Dan on May 3rd, 2004, 7:02pm on 05/01/04 at 08:38:03, gills wrote:
Yeah.. well let's keep our fucking options open, eh?... ... that really chapped my fuckin' ass. -Big Dan |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by mynm156 on May 3rd, 2004, 11:23pm One of the causes of restless legs is from the increase levels of CO2 in the brain. This is an unfortunate side effect of sleep apnea. As O2 levels decrease CO2 levels increase. This will also cause cerebral vasodilatation, which can be a trigger for CH. |
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Title: Re: Sleep Apnea & Restless Legs In ClusterHead Post by BstnEagles on May 12th, 2004, 12:59pm I have often wondered about apnea but I dont know what to look for exactly. I find that I often wake up tired and I think this could be why. Not sure if there is a relation to CH. |
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