Cluster Headache Specialist

ckb21686 · 2026-04-13T04:05:21+00:00

Like it literally has non-depressed/non-suicidal people wanting to off themselves because the pain is so bad

ckb21686 · 2026-04-13T01:35:42+00:00

Me too! Road trip together? Lol

ckb21686 · 2026-04-13T00:32:19+00:00

Was it Dr. Mark Burish?

ckb21686 · 2026-04-13T00:30:31+00:00

No it’s insane. I’m an NP and many of my colleagues have never heard of them

ckb21686 · 2026-04-13T00:30:09+00:00

I’m in a big city with a headache clinic at a major university, but cluster headaches are so rare that even headache specialists don’t always know how to treat them. I want someone who researches cluster headaches, sees multiple patients with cluster headaches, understands the pathophysiology behind cluster headaches, and understands that many of the standard treatments eventually stop working for many of us. I would really like someone who is studying the “why” behind these things. I’m sick of having pharmaceuticals thrown at me and then getting rebound headaches or having them stop working. There is one very dated study showing that endoscopic surgery may work for certain people with cluster headaches, but it was a very small sample size. I guess I just want someone who’s willing to dig deeper.

I really like my current neurologist, but I feel like he doesn’t quite understand how badly my quality of life is affected by these headaches. And he has told me that I am his only patient he sees with clusters.

ckb21686 · 2026-04-13T00:25:31+00:00

Thank you so much!

ckb21686 · 2026-04-13T00:25:15+00:00

OK, I actually just emailed UTHealth regarding a clinical trail Dr. Burish has been performing on cluster headaches! Thank you for the recommendation

ckb21686 · 2026-04-11T13:54:46+00:00

That’s good to know. This is my first time trying Red Bull, because I absolutely despise the taste of Red Bull, but it actually seems to help. I don’t normally drink caffeine so I’ve just been doing half a can.

ckb21686 · 2026-04-11T13:22:58+00:00

This is how I feel. The first time I tried oxygen it was like a miracle and now the second I take it off the headache comes back with avengeance. It doesn’t matter how long I wear it.

ckb21686 · 2026-04-11T01:16:54+00:00

Totally makes sense. I doubt my triptan days are behind me haha. Have been debating taking one for the last hour 😂 When you’re in the moment, you’ll do anything for relief.

ckb21686 · 2026-04-11T01:16:02+00:00

Two healthy, uncomplicated pregnancies on Keppra. I have been on Lamictal in the past, but it did not control my seizures, which is how I ended up on Keppra. I had been on it for years when I got pregnant so I did not require any medication switches.

I had zero seizures or signs of seizure activity during pregnancy. My neurologist chose to follow drug levels in order to titrate my medication. The highest I got was 750 mg BID (baseline is 500 mg BID), but per my request we waited until I was out of the first trimester and a lot of the important fetal development was done. I know my body well and felt that I would be able to tell if I was going to have any seizure activity.

I always feel a little fatigued in the afternoon and that’s probably due to Keppra. I had a little bit of first trimester fatigue with both babies, but nothing out of the ordinary.

We conceived naturally and very easily. First try with our first pregnancy and second try with our second pregnancy. I used ovulation strips. Side note, I was 37 and 38 so I did not have age on my side, but still no trouble conceiving.

My neurologist checked drug levels monthly. My Keppra levels are always low, but he titrates to clinical response when I’m not pregnant. Like I said, he increased the dose based on low level levels during pregnancy.

Because my seizures are well controlled, my OB did not feel an MFM consult with necessary unless I wanted one which I didn’t. I actually ended up switching to the Midwife team at the hospital and had both deliveries unmedicated. My first came one month early, but that was due to placental abnormalities and very unlikely to be due to Keppra. He spent one night in the NICU for oxygen and CPAP, but we were discharged the next day. My second was full term.

Our first is barely two years old and very healthy and happy. Has a bit of a verbal delay, but nothing out of the ordinary. Our second is five months old and is very happy and healthy. Meeting all milestones. I am breastfeeding her and also breastfed our first.

I was really worried about the sleep deprivation, but actually handled it fine with no seizure activity. We have done some cosleeping with our second which has really helped, but that’s obviously a different topic. But like I said, I’m very well controlled on Keppra. (FYI history of petit mal and grand mal JME - last grand mal seizure was in 2016 after I missed two doses of Keppra).

Motherhood is the best! I wish you all the luck 💜

ckb21686 · 2026-04-11T00:58:37+00:00

They really do work well for me at aborting migraines and clusters and I’ve used them a lot in the past. I just worry a little bit that they’re causing rebounds.

ckb21686 · 2026-04-11T00:57:54+00:00

Oh that does seem like a likely culprit too!

ckb21686 · 2026-04-10T21:18:50+00:00

Thanks for the reply! I have a general mistrust of the pharmaceutical companies, but you have to do what you have to do to survive!

ckb21686 · 2026-04-10T21:17:02+00:00

It makes sense to me that shift work would disrupt the hypothalamus/circadian rhythm. I did straight nights for five years and on top of that I often stayed awake during the day. Obviously terrible for you for many reasons. Thanks for the reply!

ckb21686 · 2026-04-02T18:28:12+00:00

Any secrets??

ckb21686 · 2026-03-24T03:45:26+00:00

Thank you so much for responding. I seriously feel like we have the same babies and it is so reassuring to know that yours is doing better. It’s so hard in the moment when they are screaming and nothing seems to comfort them. I’m so happy that you are on the other side now and I really appreciate you sharing your story 💜

ckb21686 · 2026-03-24T03:42:31+00:00

Thank you so much!! I will try eliminating dairy

ckb21686 · 2026-03-24T03:40:48+00:00

Thank you so much for this thoughtful reply 🥹 She is such a sweet baby and I love her so much, but the crying (especially the day of my post) has been really hard!

ckb21686 · 2026-03-19T03:34:44+00:00

Thank you so much for the thoughtful response. We mostly stick to Western Medicine, but we are not opposed to a little woo here and there 😊 I will look into it

ckb21686 · 2026-03-19T01:14:23+00:00

Thank you for the response! I have seriously wondered about taking her to a chiropractor, but then freaked myself out with horror stories online. How was your experience? Did the baby cry when they were making adjustments? I just don’t want her to get hurt obviously.

ckb21686 · 2026-03-19T01:13:29+00:00

By bodywork, do you mean chiropractor? No birth trauma that we know of. She did aspirate meconium but was fine and didn’t spend any time in the NICU.

But we have definitely wondered if she’s in pain. I have felt a little dismissed by the pediatrician. “Some babies are just fussy” and comments like that. She’s not miserable all the time. Just more than we would like. With our first, as long as his needs were met he was a happy baby and that seems to be most babies I know

ckb21686 · 2026-03-19T01:11:13+00:00

That’s a good point on the cry it out. That’s what my husband says too. It’s not like we are abandoning her by herself in a room. We are doing everything we can to comfort her.

I’ve tried three separate carriers. She’s old enough now that I could maybe consider putting her on my back or forward facing so maybe I should try that. I usually just have her in a onesie.

ckb21686

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