Epilepsy + Cluster Headache

[clusterhead]

Hi.
Is there anyone else having both epilepsy and cluster headaches? A part of me wishes that nobody does, really, but another one is desperate to talk to a person who has similar experiences of this excruciating pain plus the seizures.

 

[giveasmile]

I am diagnosed with partial seizures with secondary generalization.

My headaches have become debilitating but I don't know if they are textbook "cluster headaches" or some sort of post seizure headaches.

I only know that they are worse than my migraine headaches-- which I never knew was possible. They are always on one side. I don't vomit, which I did with migraines. I also can not lay still like I did with migraines. I find myself rocking or hitting/punching my head in the area of the pain and I don't even know why. It just hurts to a degree where I'd do anything to make it stop. I once feared I'd grab a hammer and hit my head.

I had migraines since I was teenager but have not lived my life with these. These types of headaches are only in the last 3 years and most frequent this year.

My seizures are not controlled.

 

[clusterhead]

Wow! I am sorry to hear about your headaches. Have you discussed the symptoms with your doctor? Not being able to lay still is very characteristic to cluster headaches as opposed to migraines. Also the pain cannot be compared, it’s like a million times worse (I have migraines also).

I am not saying that you have CH, that would be irresponsible, but it’s worth checking with a doctor. It is frustrating how many people suffering from CH are misdiagnosed in ERs although the symptoms and the frequency of the attacks are different from migraine and not so easy to miss after all! Why should anyone experience this pain if there is something to stop it?

The medication is different as well. No regular painkillers not even the strongest injections and sedatives in the hospital can help. The only thing that works for me (not for everybody) during the attack is Maxalt (rizatriptan). It does not eliminate or even reduce the pain, it only makes it last exactly 45 minutes instead of 90, which is the standard time it will last if I don’t take anything. It is so expensive that sometimes I can’t afford it. And the last time, high dosages of prednisone managed to end the CH cycle after two months of 3-4 attacks daily.

Maybe I was only obsessing because of the headaches but it seemed strange that I didn’t have any seizures during those months. This led me to think that the anti-epilectic drugs somehow controlled the seizures and resulted to the “problem” finding a way out through headaches. I was on Trileptal and Topiramate then. My doctor never agreed to this “obsession” of mine but either way I followed my gut and stopped topiramate (although I’ve read it is being used for CH in some cases).
I don’t have any scientific evidence to support the relation between the AEDs and the headaches. I only know that, according to the neurologist, epilepsy and CH are related in my case. CHs started a year after my first seizure and three years after head trauma. I haven’t found much to read in my language and I am trying to find anything in English, to look into it in order to understand better.

Anyway, I don’t know how anyone can live with that pain, I am looking for ways to cope and I am eager to learn how others manage to do it.

 

[Tez_20]

I've suffered with headaches for years and mine boil down to my temporal-lobe epilepsy..years back they was so bad I used to bang my head against a wall to numb my head, I know it sounds bad but when your feeling desperate and not even painkillers will shift them...I would do anything.

I get them now and take paracetamol up to 2000mg and still nothing and recently having the main facet joint in my neck move to the right of a bad seizure, well I can't explain the pain.

I'll add some info below and I hope it helps and I do really feel for you and other members suffering them :hugs:

 

[Tez_20]

Migraine Headache Treatment

A migraine is a chronic type of headache that affects over 28 million people in the US, and causes severe pain that lasts from four hours to three days, and occasionally even longer. There are several different types of migraines, that may or may not begin with an aura, which changes the way patients see and may cause muscle weakness or a burning sensation on one side of the body for 15 to 30 minutes before the actual migraine occurs.

Causes

While the exact cause of migraines is unknown, they are believed to be linked to genetic causes or changes in the brain chemicals, most notably a chemical called serotonin, which helps regulate pain in the nervous system. Serotonin levels can be affected by many different things, including blood sugar levels and estrogen levels in women. Certain triggers, such as strong odors, changes in weather and fatigue, may spur a migraine in some people. Patients can often prevent migraines by avoiding the triggers that cause their migraines and by maintaining a healthy and stress-free lifestyle.

Symptoms

Patients with migraine headaches often experience:
•Severe pain on one or both sides of the head
•Nausea
•Vomiting
•Vision changes
•Fatigue
•Confusion
•Sensitivity to light and noise
•Lightheadedness
•Stuffy nose


Symptoms may vary for each patient, but most find that a migraine interferes with their regular activities. The symptoms can last from four hours to three days, and may occur several times a month or less frequently.

Treatment

While there is no cure currently available for migraines, there are several medications available to help relieve the symptoms of a migraine and to prevent them from occurring. Pain-relieving medications, also known as acute or abortive treatment, should be taken at the first sign of symptoms and may include non-steroidal anti-inflammatory drugs, triptans, anti-nausea medications and opiates. Preventive medications are taken daily to reduce the severity and frequency of migraines, and may include cardiovascular drugs, antidepressants, anti-seizure drugs and even Botox injections.

 

[SayThatAgain?]

I myself get both types mostly due to seizures. At times though, a seizure will throw my neck out of alignment and that really starts them rolling. I feel your pain. When my headaches are seizure based, I can usually dampen or get rid of them with 1 to 3 magnet cycles of my VNS (I am on a daily pain killer btw as I do still have very many seizures daily with a high percentage of accompanying headaches).

You mention Prednisone and head trauma. If I remember correctly, one of the uses for prednisone is as an anti inflammatory. I would guess it would be working on the nerves as well as joints (like vertebrae). Between that and your head trauma I would ask if you have considered seeing a chiropractor? They can tell you if your neck is out of alignment and work with you towards a better alignment. That could greatly reduce your headaches. Worth a try at least.

When I met my wife 13 years ago, she was having many, many more CHs than she is now, all due to a backward curved neck caused by being kicked in the head by a horse of hers that got spooked. A chiropractor got her to where she is today. I even go regularly as it helps me, especially when my back, neck and wrists get all messed up from a seizure.

I hope this helps!

Stay positive and never give up!

 

[clusterhead]

Thank you, Tez.
I am very sorry for your headaches and painkillers not working. I understand how bad it must be if it makes you bang your head against a wall. I have horrible things passing through my mind when in pain and I feel I would try anything to stop it. Recently Wikipedia removed the colloquial name of cluster headaches. It used to be in the first paragraph. It was “suicide headache”.
Once again, I will point out that migraines and cluster headaches are two different conditions and need different treatment. Being misdiagnosed causes suffering for no reason.

 

[clusterhead]

You mention Prednisone and head trauma. If I remember correctly, one of the uses for prednisone is as an anti inflammatory. I would guess it would be working on the nerves as well as joints (like vertebrae). Between that and your head trauma I would ask if you have considered seeing a chiropractor? They can tell you if your neck is out of alignment and work with you towards a better alignment. That could greatly reduce your headaches. Worth a try at least.

Thank you so much for your help. Again, I am sorry to hear you are in pain due to seizures and I am glad that a chiropractor can relieve the pain for you and your wife. I had an excellent orthopedist, he didn’t find anything wrong with my neck. I also used to go to an eye & ear doctor and a dentist all the time, I had teeth removed, because the headache reflects there and I would insist something is wrong. Finally a neurologist diagnosed the cluster headaches, explaining it is a neurological problem connected to my epilepsy. From what I have read, there isn’t a solid explanation for what causes CHs, but according to one theory it is related to dysfunction of the hypothalamus.

My head trauma was twenty years ago and was left untreated because it was considered minor. Seizures started almost two years after. And then the headaches. I only tried prednisone about five years ago. So it is not connected to the head trauma (I guess). I’ve read prednisone is widely used as prophylactic treatment for CH. It doesn’t work as a painkiller of course, but for me it was able after a week of increasing the dosage to break the cycle of daily attacks.
And the weird thing is that seizures never gave me a headache afterwards. They disappear during the cycle and twice so far when they re-appeared the headaches stopped immediately. I can’t figure out what’s wrong with my head!

 

[SayThatAgain?]

Tez and others, so sorry to hear about your headache issues for sure. These things are truly horrible. I know that about 95%, or more, of my headaches come from seizures because that's when they pop up. We can but learn to cope and hope/pray for relief in the present and better relief in the future.

That Wikipedia would take down the term "suicide headaches" just smacks of "PC", and I just hate "PC" at this point because it has been way over done in our culture. That isn't to say that I am not respectful of others mind you.

There is, according to one chiropractor I had years ago, there is some back and forth between "regular MDs" and chiropractors about the back and neck, specifically in regards to determining alignment. My current and previous chiropractor (changed due to move) explained that their measurements are more precise and take into account more than what an orthopedist does. What ever that is supposed to actually mean comparatively. I did see an orthopedist for a badly herniated disk once (and only once!). He was talking 12 to 18 months of physical therapy and maybe surgery. YUK! Working with my chiropractor I was 90% back inside of 6 months! Your mileage may vary.

I am not trying to push chiropractic care, just recommend looking into it closely. If nothing else, it could help in other areas of the body and that in of it's self can potentially make coping with E easier. I know it has for me in many ways!

I am still learning about coping in so many new ways. I had spent years pretty much "bottled up inside", yet I was still functioning all be it minimally. I feel the biggest, single thing that has really helped me begin to help me cope better with E is being here. The simple fact of really knowing that I am not alone and being with others who actually understand because they live it every day is what helps me the most (outside of my wonderful family of course)!

Stay strong and never give up!

 

[SayThatAgain?]

Clusterhead, I am glad to hear that you didn't have a major TBI! I do apologize for not mentioning it earlier.

 

[Tez_20]

Thank you, Tez.
I am very sorry for your headaches and painkillers not working. I understand how bad it must be if it makes you bang your head against a wall. I have horrible things passing through my mind when in pain and I feel I would try anything to stop it. Recently Wikipedia removed the colloquial name of cluster headaches. It used to be in the first paragraph. It was “suicide headache”.
Once again, I will point out that migraines and cluster headaches are two different conditions and need different treatment. Being misdiagnosed causes suffering for no reason.

Hello clusterhead,

:agree: totally where wrong misdiagnosis is concerned, it causes so much damage regarding the body and brain...if I'm not popping painkillers I'm popping high dosages of iburophen for inflammation and that's besides my normal meds.

I know how your feeling concerning horrible thoughts...I've overdosed the lot in the past finding the lot way to much to cope with but now I get on where my seizures are concerned but when I have one god I don't half know about it having cervical spondylosis....here we'll scream:bigmouth: together on this issue.