Hi Guys!

  Yet again I'm here requiring your help.  My fiancee Cory has suffered with CH for 25 years, I've been a supporter for the last 10 years. He has tried all treatments other than the psychadelic alternatives & most other than sumatriptan inj have not been beneficial for him, so we have just gone back and started from scratch yet again. Cory's cluster has eased considerably from my last post (8 a day at kip 10,going for about 6 weeks at that point), He had a prednisolone abort and now is now on Verapamil 720mg a day, 50mg Prestique, O2 and sumatriptan inj as required and has only had 1 attack in the past 5 days. Which is fabulous! I think the O2 has scared the demon off for a while (atleast I'm hoping) or the cluster has come to an end, either way I'm so happy for him!

But now he is facing a couple of different issue's, during the cluster's he also suffers from Restless Leg Syndrome, which usually goes away with the demon however this time it's hanging around and is worse than ever. I have read that there is an increased amount of Restless Legs Syndrome sufferers within the cluster headache population, approx 18% as apposed to the general population being around 10%. Does anyone else have this condition and if so how do you manage it?

  The other issue he has developed is Raynaud's Syndrome. He was given 10 injections of Ketalorac (Toradol Inj) at our local Emergency Dept back in February, over a week, which set it off, at the time 3 of his finger's turned black & were extremely painful. It then took about 2 months to regain normal circulation. The doctor's claim was that it was the combination of the Ketalorac and the sumatriptan inj that had set off the Raynaud's, however the amount of sumatriptan that Cory had been on for the week prior was only 12mg for the week, compared to 12mg a day for the previous 2 months. As the demon returned and the sumatriptan increased the Raynaud's went away, until last week (again when the cluster and sumatriptan decreases), and his whole foot has turned a grey color and is very painful. This doesn't seem to make sense  to me, as the vasoconstrictor effects of the meds would support Raynaud's with excessive use of the sumatriptan not without it?   Does anyone else have this issue or ability to explain it? Or any advice?  I'm thinking that clearly Cory's body can not sustain the use of Triptan's like it has in the past, so we may need to look at the alternatives? O2 on its own just won't be sufficient.

Sorry the post is so long! Any help/ info/input would be appreciated greatly!

                                       Regards Shell : :-/ :-/ :(

the restless leg is pretty typical. i think anyone would have a restless leg in that much pain. i don't think its anything to worry about :)

just a question but why wouldn't he consider psychedelics as an option? seems that the meds are tearing him up.

also is he using o2?

Wow...the med questions are way over my head, and I have not suffered from restless leg syndrome yet.

I'm with Jonny......given your descriptions of his cycles, and the failures of some of our more traditional treatments, he should at least check out   clusterbusters.com    been a life saver for many of our members here when traditional meds failed.

Joe

I also have RLS (Restless Leg Syndrome) but I had bouts of it long before I had CH.  RLS isn't something you can "control" like your actions/movement during a CH hit (yes all I know all to well that moving during a ch hit isn't really a choice but a must do, it's either that or start breaking things) RLS usually strikes right about the time you are trying to relax for the night before bed or just after getting into bed.  CH waits till you are just about at a good sleeping point and WHAM-O the beast hits you in the head with his friggin pitchfork.

As for managing RLS I use an herb actually.  It's called Skullcap (425 mg) and the name of the plant is Scutellaria Laterifolia it is sometimes hard to find. I spent about a month being tortured because a Store I used to go to to get it no longer decided to stock it.  I had to hunt for a store that carried it.  I wound up going to many stores!  FYI GNC was a no go, anyway I finally found a local Natural foods store that carried it.  You may have to do some hunting to find it.  One supplement about an hour before bed usually does the trick for me, depending on your hubby's size he may need to go for two or even three pills.

I hope this Helps!

I don't know of any relationship between RLS and CH - but again, CH is such a rare condition, the studies on it and it's association with other conditions are limited. 

If he only has RLS with his clusters, I'm wondering if its more of a muscle relaxation response or, if he's treating his CH with high levels of caffeine - a response to that - rather than idiopathic RLS...
In any case, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE has some nice recommendations for non-pharmacologic treatments of RLS and is a reliable website.  Otherwise, you may want to talk to your doc about lab tests to rule out any underlying issues such as low iron (which can definitely contribute to RLS) or herbs and/or prescription treatments...

As for the Raynouds, just from your description, this does not sounds like primary Raynouds which is idiopathic and generally is an exaggerated response to cold and other events that can cause vasospasticity such as emotional stress...  From your description, I'd be concerned about either secondary Raynouds - i.e. excessive vasospasticity because of a medical issue (such as an auto-immune disease), or, more likely, simple excessive vasospasticity from one or more medications that are known to cause vasospasticity - i.e. tripans and nsaids (toradol).  There is not always a direct correlation to the amount of medication that someone has taken just over the past day or so and the amount of vasoconstriction when dealing with these types of medications.  Sometimes, there is more of a cumulative effect...
In any case, particularly as he is having some severe symptoms with this, and sometimes rather nasty things can happen with prolonged significant vasoconstriction such as gangrene and such, he needs to see his regular doc to rule out any other issues with his circulation...

Sorry that my response is so long, but I hope it helps!!!!
:)

RLS used to be a real bug bear for me until I started on the Magnesium/calcium supplements.
I now rearly get RLS & if I do it's only minor.
There are a myriad of these type of involuntary muscle movement disorders, way to many to mention here but one of the common references to most is  serotonin the same neurotransmitter that pops up when talking CH.
I have developed a syndrome, malady call it what you want known as Sleep myoclonus, quote "Sleep myoclonus occurs during the initial phases of sleep, especially at the moment of dropping off to sleep. Some forms appear to be stimulus-sensitive. Some persons with sleep myoclonus are rarely troubled by, or need treatment for, the condition. However, myoclonus may be a symptom in more complex and disturbing sleep disorders, such as restless legs syndrome, and may require treatment by a doctor."
Here's a link to just one of the sites describing this.
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It doesn't hurt, it's just a bloody nuisance when I get as little as 4 hours sleep on most nights & melatonin supplements don't seem to help.
Ah well such is life.

Cheers
Barry

I have RLS.

Well I used to have it - Magnesium/calcium supplements made it go away for me (twice as much magnesium as calcium).

Unfortunately there can be a little trial and error involved, because more sophisticated forms of cal/mag, such as citrate, are the only ones that work for some such as myself, whereas cheap crude mag oxide and cal carbonate actually worsen the condition. Then there are others who have opposite results with these forms.

I'm really taking the magnesium for the RLS, and just adding some calcium so I'm not causing too much of a mineral imbalance,

Then there's a really good homeopathic in the states "Hyland's Restful Legs" I've recently tried that works great.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Please, lets not see Cory taking any DRUGS for RLS. Idiot doctors routinely prescribe dangerous drugs for it and it's a crime.

Thanks for your replies!

The main reasons that we have not tried the "alternative" path is we both do Law enforcement work and carry firearms,  we have two beautiful daughters who are 6 and 8 and the legal ramifications would destroy them. We are however members of the clusterbuster site as I have been doing heaps of research on all things cluster related and one of the biggest problem's we would have with the alternative treatments is actually sourcing the plant materials required, I have only found one sharman site that has seeds and they are $4 for 8 seeds and only have access to 40 packs, which would not be nearly enough. I am looking for other avenues though. You are definitely correct that the meds are destroying Cory's body but thankfully his mind is still strong, I do believe that cluster headache sufferer's are one of the toughest bunches of people on earth!  The O2 has been a saviour and we will never be without it again, It has it's own space in our bedroom (actually it looks more like a shrine to the O2 bottle, now that I think about it).
I will check out the herbal aspects for treatment of RLS, Our Gp hasn't checked Cory's iron levels so I'm also going to request blood tests for iron, magnesium, calcium and D3. Cory has found caffeine to trigger attacks so has very little, Thanks for the link to tips, he has been following this advice for the last couple of years and has tried muscle relaxants to no avail.
Secondary Raynaud's does explain Cory's condition better, He has been seeing a Specialist of Internal Medicine, who has done many tests unfortunately all have come back as negative or inconclusive, he acknowledges there is a severe problem but does not have a diagnoses, he said "what Cory is suffering from is extremely rare". He is not sure if it's a systemic disease or medication toxicity, however he is interested and attempting to help, rather than putting it in the too hard basket!
There certainly does seem to be a link in regards to magnesium, calcium, iron and Vitamin D and sleep disorders with the cluster's and RLS. The RLS isn't painful just irritating, Cory's sleep is almost non existent, he'd be lucky to get an hour or two a night which seems to be making the Raynaud's much worse causing alot of pain. When Cory's finger's went black the doctor's suggested amputation, I have to find something that will give him some relief before they just start cutting off limbs. The GP has told us that in severe cases like Cory's it's not uncommon for people to loose multiple limbs. At-least we know Cory's an individual and doesn't fit the mold, now he has two, maybe three rare conditions ( I'd settle for the common cold), They say life wasn't meant to be easy, but surely it shouldn't have to be this much of a fight all the time! Wishing you all pain free times!
                                 Regards Shell :)

I forgot to add Cory's Comment of the day:

"I don't feel like a clusterhead anymore, I just feel like a clusterf**k."

He's trying to stay positive but as you would all know when your exhausted and in pain, sometimes that's a battle too!

Thanks again for all your support and wonderful advice!

                              Regards Shell :)

Shell, I'm glad you brought this up.

Very interesting that this subject is being discussed.  Since my CH episode ended almost two months ago (Yay! -- not even a migraine in that time period, which is VERY unusual and welcome) I have developed pretty bad restless arm and leg syndrome.  That's what brought me back to CH.com today -- to see if others suffer from RLS.  I've had it on and off during my adult life, but it has gotten noticeably worse since the CH episode ended. 

Some of what I read on the web indicates that RLS "might" be associated with an abberation deep in the primitive brain (see START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; ).
I thought, "Hmm.... deep brain.... CH... RLS... any relationship?"  The RLS has gotten particularly bad the last week or so and there has been no change in any of my "other" medications during that time.  I've been on magnesium supplements forever.  I wondered perhaps if the complete lack of sumitriptan in the past couple of months might have changed seratonin levels, which also seem to be linked to RLS. 

Bejeeber, I'll order some "Restful Legs" and Ginger, I'll look into Skullcap. 

After the three month bout of CH that ended in early August, the CH pain free time has been awesome. I was wondering if the very real RLS was hyochondria, but I'm "glad" to see that other CH people have it, too.

Sorry to have abandoned activty here since I became pain free.  I'll try to check in more often and not be a "foul weather" participant!

Jim

So sorry to hear about all the problems. I know the feeling! I can't say anything on the topic of RLS, but I am extremely knowledgeable on Raynauds disease. I have suffered from severe secondary Raynauds for approximately 10 years now that was first thought to be idiopathic. Does the Raynauds begin within the day or two of taking a vasoconstrictor medicine like imitrex or DHE? These meeds actually contain warnings for Raynauds patients. Do you notice problems holding cold glasses, going out in the cold, or in the freezer section of the grocery year round regardless of the imitrex use? If so, it probably dint directly from the imitrex use.

I don't think you mentioned how old your fiancé is. Raynauds, if idiopathic, usually appears in females around the age of puberty. Secondary raynauds is often considered when it appears in males, at an older age, and with a greater severity, such as developing ulcers in the fingers. My raynauds was originally thought to be primary, but after developing ulcers and then having an autoimmune disease come to rear it's head, it is now secondary. I would recommend seeing a good rheumatologist for this matter. Not all autoimmune that present with raynauds come back with a positive ANA or sed rate. Se must be diagnosed based on symptoms alone. Autoimmunes may present negative and evade a diagnoses for years (kind of like CH!) before a proper term is found for what is happening.

With raynauds, the verapamil should actually help symptoms as it controls the tone of the blood vessels pericardia also is an option. In particular for us clusterheads, stay away from the nitroglycerin ointment that is also prescribed as it can trigger CHs for us. Other options if it does just happen during a cycle with the use of imitrex: a stellate ganglion block. It's temporary, but may get him through the cycle with warm hands. I have tried many other options in conjunction with the CHs. Please feel free to pm me with more questions. 

Also, you mention he's had a lack of sleep. This is a form of stress in the body and stress, besides just cold, is known to trigger a raynauds attack!

Just a couple of thoughts (not that I know much about Raynard's other than it's a circulatory thing) isn't verapamil a drug used for the control of high blood pressure ? so wouldn't that make Raynard's worse ?

Also Knowing how verapamil made me feel when I was taking it at only 40mg a day (numb, tingly, jumpy, shaky and dizzy, no it did not agree with me ) just wondered if it could be upsetting RLS . The way verapamil made me feel I couldn't stop it quick enough .

Good luck and God bless

Nigel

Nigel, you're right about verapamil being used for high blood pressure. it is also one of the first line medications for Raynaud's disease because it is a calcium channel blocker. Procardia and Norvasc are also used frequently as another CCB. It keeps some of the blood vessels dilated, which is the issue with Raynaud's disease when it is cold. I took this class of meds for Raynaud's disease before I developed cluster headaches, but had to stop them because like you, they also made me dizzy.

I also experience RLS generally during the recovery phase after having a CH attack.  I'm taking 240 mg of Verapamil daily, using Treximet for pain, and just recently started 3 mg melatonin 30 min before bed.  The night hits have stopped with the melatonin but I did trigger one 2 days ago during the day after a period of exertion.  After reading various threads on this site, I plan to start Mg, VitD and calcium supplementation as well. 

You should read the thread on testosterone called "why aren't more people paying attention" .  I plan to follow- up with my OBGYN to get hormone levels tested and see if there's an issue there.

I have RAYNAUD'S SYNDROME. Well I've been on Cyclandelate 400MG. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is a vasodilator should actually help Raynaud's disease. This medication relaxes veins and arteries. It widens blood vessels, which allows blood to flow more easily. It was made me feel better.

Wow.  I never realized that the RLS had anything to do with my CH.  Looking back though, I now see a correlation in cycles and increased leg restlessness.  I guess I'll never stop learning around here! 

I take Benadryl to help with the uncontrollable urge to move my legs and to help me sleep a few hours in cycle.

Jeannie