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tashasookochoff

Cluster headache or migraine? Cluster headaches that last as long as migraines

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Hi Everyone, 

 

I've suffered from all types of headaches for a long time. I'm currently being treated for migraines. However, my headaches often present significant cluster symptoms. My doctors and I are having a hard time diagnosing the type of headaches I'm having and subsequently, how to treat them. I'm already on depakote for my bi-polar II. It doesn't have an effect. I've taken lithium and topiramate for my mental health and those also did not have an effect. I take treximet (sumatriptan and naproxen) as an abortive, and it usually works, but the side effects are miserable. ANY help, feedback, support, questions, or even if you have similar symptoms, would help sooooo much. Also, I don't know if it matters, but I'm a female and 29. These headaches started when I was 19 and have gotten worst since I've aged. I was diagnosed with MDD at 23, and then BPII at 28, but my medications don't seem to affect my headaches. 

Cluster headache symptoms 

 

-Headaches are seasonal and I will typically get 3-5 a week for a 1-2 month period every fall and spring. 

 

-During a headache period, headache will occur at the same time every day. Usually in the late afternoon or early morning (4:00 / 5:00 AM). 

 

-My left eye (same eye I experience pain) will water to the point that people think I'm crying. 

 

-Brutal, excruciating, stabbing pain behind left eye 

 

-Nose congestion 

 

Migraine symptoms

 

-Headache (stabbing sensation) begins and pain increases over hours. Headaches last for hours until treximet works or I can sleep it off. They last longer than cluster headaches are supposed to (4+ hours)

 

-Sensitivity to light, sounds, and smells 

 

-Nausea, diarrhea

 

-Strong desire to lay down 

 

??? Additional random symptoms, triggers, and things that help. 

-Excessive sweating is a random symptom 

 

-Heat and cold help, especially wet washcloths 

 

-Sleep and fresh air also help 

 

-Alcohol, stuffy rooms, scents, seem to trigger 

 

-Muscle tension is also a problem 

 

 

 

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Wow, sorry to hear about everything that is afflicting you.  That is quite a challenge.  You must be a very strong person.  It is hard to tease out all theelements in your well written description.  It sounds like you have partnered with some good folks to help sort things out.  If you haven't been to a headache clinic or a neurologist who specializes in clinics it is something to consider.  When you have mony different types of headaches keeping a log headache diary will be helpful to track and possible reveal patterns.  Although there is some overlap in the treatment of migraines and clusters they are different animals mediated by distinctly different pathways so treatments won't necessarily be the same at any one time.

 

The resolution of an attack with oxygen would favor calling the headache a cluster although there is some suggestion that migraines may respond to oxygen too.  Generally that takes more than 10 minutes (for a migraine).  I suspect the change in breathing and blowing off carbon dioxide may play a role in oxygen and migraines too.

 

You will find lots of help and support here from very experienced folks but stay on track with your provider(s) because it sounds like you need a firm diagnosis and a treatment plan based on multiple contingencies.

 

Welcome

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Yes, I know that list all too well--I get all of those CH symptoms too, and a couple that you listed under migraine and the whole list of triggers, with one huge difference being the urge to lay down. For me, laying down makes a CH attack worse, and it seems to be one aspect that differentiates CH from migraine, although it might not be the same for everyone. I definitely agree with Pebbles regarding the oxygen--really effective for me in aborting a CH attack. I luckily have a big giant tank which lasts for a while--small tanks can go quickly because of the high flow. Acupuncture and high dose magnesium are also helpful in reducing the frequency/severity. I've had clusters with and without those, and there's a definite difference for me.

 

I don't have experience with most of the meds you mentioned, although I have read that lithium is helpful for some chronic CH sufferers. It sounds like maybe it didn't help for you though. I agree with you about Imitrex--not my favorite at all, but better than an attack. I luckily live where dipyrone is still available--it is not used in many places because of a very rare but very serious potential side effect. It's really too bad because for most people it's a safe, effective pain reliever--I find it very tolerable compared to and indeed more effective than triptans, ergotamine, etc. I only take that though if I'm not at home near the O2, which is the fastest way to stop the pain for me. If you have CH, and it sounds like that could very well be the case, high flow oxygen may be the answer. I read about oxygen therapy a few years ago, but it wasn't until last year that I finally got some and it has made all the difference in the world, including making being in an active cycle a little less stressful. When an attack comes, instead of stressing about having to yet again take some harsh meds and hoping and waiting for them to kick in, I know relief is 8 - 15 minutes away, no side effects. If you haven't tried it, maybe it would be worth having a chat with your doctor about it. Best of luck!

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Yes, I know that list all too well--I get all of those CH symptoms too, and a couple that you listed under migraine and the whole list of triggers, with one huge difference being the urge to lay down. For me, laying down makes a CH attack worse, and it seems to be one aspect that differentiates CH from migraine, although it might not be the same for everyone. I definitely agree with Pebbles regarding the oxygen--really effective for me in aborting a CH attack. I luckily have a big giant tank which lasts for a while--small tanks can go quickly because of the high flow. Acupuncture and high dose magnesium are also helpful in reducing the frequency/severity. I've had clusters with and without those, and there's a definite difference for me.

I don't have experience with most of the meds you mentioned, although I have read that lithium is helpful for some chronic CH sufferers. It sounds like maybe it didn't help for you though. I agree with you about Imitrex--not my favorite at all, but better than an attack. I luckily live where dipyrone is still available--it is not used in many places because of a very rare but very serious potential side effect. It's really too bad because for most people it's a safe, effective pain reliever--I find it very tolerable compared to and indeed more effective than triptans, ergotamine, etc. I only take that though if I'm not at home near the O2, which is the fastest way to stop the pain for me. If you have CH, and it sounds like that could very well be the case, high flow oxygen may be the answer. I read about oxygen therapy a few years ago, but it wasn't until last year that I finally got some and it has made all the difference in the world, including making being in an active cycle a little less stressful. When an attack comes, instead of stressing about having to yet again take some harsh meds and hoping and waiting for them to kick in, I know relief is 8 - 15 minutes away, no side effects. If you haven't tried it, maybe it would be worth having a chat with your doctor about it. Best of luck!

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Sorry to hear your about your pain. I have used topomax for 2 years. It worked but I had to stop due to side effects. Now I am taking varapamil, D3 vitamin and duloxetine.

Oxygen and verapamil are most popular drugs/remedies in this forum. I am not why my neuro suggested duloxetine but it worked for me.

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Sounds like you have the same tyoe of problem I have. After 20 plus years of my Doc of treating my headaches as migraines it turns out that I have migraines with cluster events during the attack. What happens with me is during a migraine I will get a CH that last between 1 1/2 to 3 hours long with 1/2 hour breaks in between CH events. Oxygen and MM and seeds have been a life saver for me.

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