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Topic: Sleep Apnea & Restless Legs In ClusterHeads (Read 1334 times) |
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Dover
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Sleep Apnea & Restless Legs In ClusterHeads
« on: Apr 6th, 2004, 8:51am » |
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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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Melissa
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #1 on: Apr 6th, 2004, 9:07am » |
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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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| « Last Edit: Apr 6th, 2004, 9:08am by Melissa » |
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aprilbee
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #2 on: Apr 6th, 2004, 9:50am » |
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I have the restless leg thing, but its not just at night...
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echo
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #3 on: Apr 6th, 2004, 9:57am » |
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No
Did, but has been surgically corrected
No
Don't know
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Tiannia
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #4 on: Apr 6th, 2004, 10:43am » |
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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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Racer1_NC
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #5 on: Apr 6th, 2004, 10:51am » |
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Restless legs...... no
Sleep Apnea......yes
Difficulty sleeping.......at times, yes
Prolactin levels.......damifino
Bill
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Dover
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #6 on: Apr 6th, 2004, 11:49am » |
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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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Superpain
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #7 on: Apr 6th, 2004, 1:52pm » |
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I've had "restless leg"... It's not pervasive or often though.
Yes on sleep apnia.
Not really on insomnia.
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Chris
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KingOfPain
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #8 on: Apr 6th, 2004, 4:35pm » |
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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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| « Last Edit: Apr 6th, 2004, 4:38pm by KingOfPain » |
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FZfan
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #9 on: Apr 6th, 2004, 5:16pm » |
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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? 
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Dover
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #10 on: Apr 6th, 2004, 5:23pm » |
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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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5-string
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #11 on: Apr 6th, 2004, 5:47pm » |
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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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Dover
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #12 on: Apr 6th, 2004, 6:38pm » |
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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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floridian
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #13 on: Apr 7th, 2004, 9:05am » |
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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:Cephalalgia. 1987 Mar;7(1):43-54.
Prolactin in cluster headache: diurnal secretion, response to thyrotropin-releasing hormone, and relation to sex steroids and gonadotropins.
Waldenlind E, Gustafsson SA.
The diurnal rhythmicity of serum prolactin (PRL) and the PRL and thyrotropin (TSH) response to thyrotropin-releasing hormone (TRH) were studied in 31 cluster headache patients (4 chronic cases) and 14 healthy controls. Sixteen of the patients were studied both during clinical remission and headache periods. In males the nocturnal PRL peak was blunted during remissions as compared with that in cluster periods and that in control individuals. The 24-h mean PRL levels were lower during remission and cluster periods than in the controls. There were no significant differences in the PRL levels between female patients and controls. Headache attacks were often associated with increases of serum PRL levels. The PRL response to TRH was lower in the female patients but not in the male patients as compared with controls. The maximum testosterone levels were lower during cluster periods than during clinical remission but not when compared with controls. Serum levels of luteinizing hormone, follicle-stimulating hormone, progesterone, estradiol, T3, T4, and TSH did not differ between patients and controls. The results suggest an altered regulation of PRL secretion not only during active cluster periods but also during symptom-free intervals. The possible influence of sleep, estradiol, testosterone, medication, pain, and serotoninergic and dopaminergic mechanisms are discussed.
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| « Last Edit: Apr 7th, 2004, 9:09am by floridian » |
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floridian
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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:Headache. 2001 Jul-Aug;41(7):723-5.
Clusterlike headache as first manifestation of a prolactinoma.
Porta-Etessam J, Ramos-Carrasco A, Berbel-Garcia A, Martinez-Salio A, Benito-Leon J. Department of Neurology, Hospital Universitario 12 de Octubre, Madrid, Spain.
We report a case of cluster headache in a patient with a macroprolactinoma. Symptomatic cluster headache was suspected because of an unsatisfactory response to medications that are usually effective in idiopathic cluster headache. The neurological examination was normal. However, magnetic resonance imaging demonstrated a large pituitary tumor. One year after starting treatment with cabergoline, the patient remains asymptomatic. Symptomatic cluster headache should be suspected when the clinical features of the headache are atypical. By inducing vascular mechanisms, the parasellar lesion may have played a role in initiating the cluster headache. |
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Jerry_b
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #15 on: Apr 7th, 2004, 2:44pm » |
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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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floridian
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #16 on: Apr 7th, 2004, 2:58pm » |
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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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| « Last Edit: Apr 7th, 2004, 3:10pm by floridian » |
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Tiannia
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Re: Cabergoline
« Reply #17 on: Apr 7th, 2004, 3:37pm » |
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on Apr 7th, 2004, 10:11am, floridian wrote: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.
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.
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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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floridian
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #18 on: Apr 7th, 2004, 4:10pm » |
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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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| « Last Edit: Apr 7th, 2004, 4:34pm by floridian » |
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Killroy 2.0
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #19 on: Apr 7th, 2004, 4:21pm » |
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No
yes
yes
going to be tested. Doc is following this line of thought and treatment.
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #20 on: Apr 7th, 2004, 8:46pm » |
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1 No
2 No
3 No
4 No never had it checked.
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HypnoticFreddy
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #21 on: Apr 7th, 2004, 9:44pm » |
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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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Opus
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #22 on: Apr 7th, 2004, 11:09pm » |
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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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sgarner
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #23 on: Apr 8th, 2004, 12:56am » |
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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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Lizzie2
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Re: Sleep Apnea & Restless Legs In ClusterHead
« Reply #24 on: Apr 8th, 2004, 1:44am » |
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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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