Verapimil for Cluster headaches & migraines

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CountingMySpoons
Regular Member


Date Joined Sep 2014
Total Posts : 225
   Posted 10/5/2014 9:43 AM (GMT -7)   
There isn't a forum for cluster headaches (that I saw) so I thought I'd post this here. I suffer from both migraines and cluster headaches. Trying to explain the two is difficult, and it took me a while even to understand them. For me, they both reside in my right temple (or at least start there), but migraines tend to take over the whole right side and leave me unable to move (especially if they are present when I wake up). Whereas cluster headaches leave me restless and unable to really be still. I can still (most of the time) at least pretend to be normal during either of them (with the exceptions of waking up with a migraine, in which case there's no moving until it's gone).

Cluster headaches (as the name implies) come in clusters. So, once a cluster starts I know I'll be seeing that same headache again and again until it finally goes away (weeks or months later, typically). The headache will show up about the same time each day (sometimes multiple times in a day). It feels like an ice pick is being rammed through my right eye (and much like migraines, bright light, noise, smells can make it worse). Often during a cluster I will have both the cluster headaches and the migraines, with one turning into the other making it difficult to function. After several years of this, I have learned how to function despite the pain (for the most part) even if it's not at full capacity, I get by. But, it still hurts like hell.

Anyway, just before my most recent cluster started I saw my neuro for the usual bi-annual visit, and we talked about Verapimil. I'd heard good things about it for the cluster headaches so I was willing & ready to give it a try. Of course 3 days after I started it the cluster started. I'd initially asked him to start me low (as it usually doesn't take much for a med to work on me), so he started me at 100mg/day. When the cluster started 3 days later I called and he upped the dosage to 184 along with throwing a steroid pack at me (he's done this before and it has never had an effect). Finally, after 10 days of the cluster it died down. I think that's the shortest cluster period I've had (usually they are a couple of months), so I'm really hopeful that the Verapimil is doing the trick.
Julie,
Counting My Spoons - Living well despite chronic illness.

Fibromyalgia, Migraines, Cluster Headaches, Endometriosis, Hypothyroid

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7144
   Posted 10/5/2014 10:37 AM (GMT -7)   
Julie, let us know if this med works. I to have clusters.

am on a cocktail for other chronic head pain as well. See my dx below.

Thanks
Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

CountingMySpoons
Regular Member


Date Joined Sep 2014
Total Posts : 225
   Posted 10/6/2014 9:48 AM (GMT -7)   
Trina,

It's only been a few weeks, but like I said my cluster did die down much quicker than normal. So, I'm hoping that staying on it long term maybe it will actually prevent them. I usually get hit twice a year, so it'll probably be next summer before I really know on the clusters. As far as migraines go, I keep a mild migraine (ignorable) pretty much all the time, and I still have that. But, I've not had it increase to the point that I needed to take anything since the cluster died down (Sept. 26). I've been averaging about 6 really bad ones /month on the good months, so we'll see how October does.
Julie,
Counting My Spoons - Living well despite chronic illness.

Fibromyalgia, Migraines, Cluster Headaches, Endometriosis, Hypothyroid

CountingMySpoons
Regular Member


Date Joined Sep 2014
Total Posts : 225
   Posted 12/17/2014 2:11 PM (GMT -7)   
Still doing well on the Verapimil. In Nov I had 5 migraines bad enough that I had to take something. I haven't had the cluster return since October. When I saw my Neuro again last week he went head and upped me to 240mg to see it would cut the remaining migraines out. I actually haven't had one that reached a level that required me to take anything since mid-November (a month!).
Julie,
Check out my blog: Counting My Spoons - Living well despite chronic illness.

Fibromyalgia, Migraines, Cluster Headaches, Endometriosis, Hypothyroid

CountingMySpoons
Regular Member


Date Joined Sep 2014
Total Posts : 225
   Posted 12/18/2014 4:04 PM (GMT -7)   
So much for that. I'd been having increasing symptoms of joint pain and this weird pain in my feet. It felt like I'd been standing on them in awful shoes all day long. And when I actually had been standing on them it was even worse. started thinking about it and did some digging to discover that it's an uncommon side effect of Verapamil. go figure. Called my neuro and they said to stop taking it. Sometimes we trade one pain for another.

Clustersurvivor33
New Member


Date Joined Aug 2017
Total Posts : 6
   Posted 8/6/2017 1:30 AM (GMT -7)   
Sorry I didn't understand how to respond to a post I didn't mean to resend yours I'm taking 240 verapamil daily basis and 80 mg of prednisone I haven't been affected by the verapamil in any way but the prednisone causes me a lot of pain in my hip and thigh area like a dull burning so much so I can't sleep or sit for long periods of time it took years to get bit now they give me oxyneo it's a extended release of oxycodone it helps but still painfull but it beats having cluster migraines or they are nicknamedsuicide headaches

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 1990
   Posted 8/19/2017 2:22 AM (GMT -7)   
When we have headaches, something is going wrong. When the headaches begin later in life, the genetic component often has a lesser effect than our environment. If our environment is affecting our health, what particular is causing problems? It could be a number of things (too many to go into) but it could be food related, it could be toxin related, or it often is a combination of both.

Verapamil is a blood pressure medication that alters calcium influx into a cell. It also reduces heart rate. You could go in depth and learn about its affect on the trigemino-vascular system, but I'm not sure that is necessary. We know that lithium treatment is the most effective prophylactic treatment for chronic cluster headaches. Why is Verapamil effective also? Dilating the arteries increases blood flow and perhaps this helps prevent a cellular physiochemical event like cell membrane deformation or the proper alignment of water molecules along the cellular membrane? No one really knows how or why. I have hypothosized that temporal dehydration is one of the many causes of headaches and anything to help rearrange water molecules will help with blood flow and proper cellular adhesion. Long story short, alter your body's environment, you alter the pain you are feeling.

woodiebob
New Member


Date Joined Aug 2017
Total Posts : 6
   Posted 8/31/2017 12:23 PM (GMT -7)   
Fortunately, I do not get migraines, but I have had Cluster Headaches since 2011. For over three years, my preventative medication has been Verapamil 240 1XD and Lithium Carbonate 300 2XD. Up until the last 2.5 months, I have still had CH 4-5 times/month for most of the time, so I don't know how effective they have been. I know that when the cardiologist took me off the two medications last year, my CH jumped to about 15-16 times/month. Take a look at my signature because I am pretty excited about the relief that I am getting right now. I hope this helps.
Onset of Cluster Headaches in 2011 at age of 64. Preventive medications Verapamil and Lithium Carbonate. Treatment medications: Migranal, O2 and Ergotomine. Normal start at 2:30AM and last about one hour. Intensity ranges from pain level 6 to 10 with most at 8. Since June 12, 2017, have been using aroma therapy about 8 - 16 hours/day with NO headaches.

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 1990
   Posted 9/14/2017 1:22 AM (GMT -7)   
woodiebob said...
Fortunately, I do not get migraines, but I have had Cluster Headaches since 2011. For over three years, my preventative medication has been Verapamil 240 1XD and Lithium Carbonate 300 2XD. Up until the last 2.5 months, I have still had CH 4-5 times/month for most of the time, so I don't know how effective they have been. I know that when the cardiologist took me off the two medications last year, my CH jumped to about 15-16 times/month. Take a look at my signature because I am pretty excited about the relief that I am getting right now. I hope this helps.


Have you tried increasing sodium intake at supper? That sounds like a temporal dehydration headache. I'd investigate sodium intake and water levels.

woodiebob
New Member


Date Joined Aug 2017
Total Posts : 6
   Posted 10/1/2017 8:04 PM (GMT -7)   
Georgia Hunter said...
woodiebob said...
Fortunately, I do not get migraines, but I have had Cluster Headaches since 2011. For over three years, my preventative medication has been Verapamil 240 1XD and Lithium Carbonate 300 2XD. Up until the last 2.5 months, I have still had CH 4-5 times/month for most of the time, so I don't know how effective they have been. I know that when the cardiologist took me off the two medications last year, my CH jumped to about 15-16 times/month. Take a look at my signature because I am pretty excited about the relief that I am getting right now. I hope this helps.


Have you tried increasing sodium intake at supper? That sounds like a temporal dehydration headache. I'd investigate sodium intake and water levels.


Thanks for the thoughtful post. I was diagnosed first by a Neuropthamologist and then by Neurologist that specializes in headaches. My headaches are classic Cluster Headaches.

September 12th marked Three Months without a headache, which is more than a month longer than my previous "remission". I don't know if the reason for this amazing relief from CH's is the aromatherapy or just a coincidence, but I am begging to hear from anyone who has tried AR and how it worked for them. I have never heard of it as a treatment or preventative, and only tried to appease my wife, but the relief is a blessing. I will not go without AR until and unless I am proven wrong.

By all means, if anyone has tried Aromatherapy for Cluster Headaches, please let me know. Thank you
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