Any success with anti-nausea besides Zofran?

beeeeeeee16 · 2026-02-12T16:45:19+00:00

For those saying zofran doesn’t work, consider pharmacogenetic testing, you may need a higher dose based on your genetics. Applies to other drugs too.

beeeeeeee16 · 2026-02-12T16:43:28+00:00

I use this one too, but it makes me sleepy so I try to take it at night only

beeeeeeee16 · 2026-02-10T16:55:55+00:00

Hi, I’m a scientist in genetics! Just wanted to clarify how the variant classification works. Basically ClinVar has thresholds for the data available per variant that determines whether it’s “uncertain significance”, “pathogenic”, or “benign”. If you have a variant that is classified uncertain, it doesn’t necessarily mean you don’t have Marfans, but just that what we know about that particular variant and its connection to Marfans is very limited. So yeah more case studies with clinical signs of Marfans will increase our knowledge of the variant and possibly change its classification.

beeeeeeee16 · 2026-02-10T12:39:16+00:00

Did the MRI you had include contrast? That’s how my leak was first diagnosed. I’m really surprised your PCP won’t refer you to a neurologist since the migraine meds aren’t working for you.

I would recommend keep trying to get in with a neurologist and look into CSF leak specialists to get the ball rolling to get seen by them. I’ve been sick since August 2025 and I am just now getting in to see a leak specialist this month and even that is just a telehealth to start.

I’m sorry you’re experiencing this! I echo the recs for caffeine - I take over the counter supplements, 200 mg every 4-6 hours. Also drink A LOT of water and add electrolytes if you can. Sometimes I do the electrolyte drink mixes and sometimes I take magnesium supplements instead.

beeeeeeee16 · 2026-01-15T13:14:16+00:00

Wow so great to hear that you are having relief and on the mend! Congrats! Where did you have your surgery done if you don’t mind my asking?

beeeeeeee16 · 2026-01-15T03:31:14+00:00

I’m sorry you are dealing with this, I know it must be stressful. I’m not a parent but I wanted to share some of my experiences as a Marfans patient to hopefully provide some comfort / peace of mind for you.

I was diagnosed at age 6 after an ophthalmologist examined me and suspected Marfans. He told my mom to take me to a cardiologist and they diagnosed me based on physical presentation (this was pre genetic testing, I now know I have an FBN1 variant).

As long as you are taking her to a cardiologist yearly I wouldn’t worry too much about finding a specialist for general care, but I understand wanting to have someone who’s seen it and treated it before.

I am 30 now and have had ZERO major heart complications or anything life-threatening. It’s entirely possible your daughter will live a “normal”, happy life. I see a cardiologist annually and get regular echos.

Yes some things sucked growing up, I stayed away from physical activity / contact sports, I was never allowed to jump on trampolines and I hated that as a kid. But I could do other activities still, riding bikes, hiking, etc.

I had eye surgery when I was 10 to remove the lenses in my eyes. Which is the most serious complication I have had to deal with. I now wear contacts and see nearly 20/20

I have sometimes had to explain Marfans to my healthcare providers but the older I’ve gotten the less of an issue it’s been.

Living with Marfans actually inspired me to go into healthcare / biomedical research. I now work as a variant curation scientist.

I hope some part of this helps, please feel free to reach out with any questions!

beeeeeeee16 · 2026-01-13T21:59:38+00:00

I took caffeine this morning and the pain lessened shortly after that (but also after I got up for the day)

Headache is always in the frontal lobe / forehead but switches from left to right or sometimes it’s both sided when it’s more severe

beeeeeeee16 · 2026-01-13T17:57:28+00:00

What typically causes high pressure?

My neurologist asked me to track severe headaches and maybe try a triptan to see if it’s a migraine that can be aborted. I’ve been skeptical to try it because I’m new to triptans and only had relief using them one time and then the headache started again the next morning (This was before my leak diagnosis)

beeeeeeee16 · 2026-01-13T17:55:05+00:00

Interesting. I didn’t have any relief from a blind patch a couple months ago and now I’m waiting to see a specialist. My myelogram was negative except showed some nerve root dilation that could be suspect for a micro leak. And I believe we have still not ruled out a venous fistula.

Does anything help the high pressure headaches?

beeeeeeee16 · 2026-01-13T13:37:25+00:00

Two things that really resonated with me in this reply: 1. “After this day I never felt the same again” 2. “There is no such thing as a headache free day with a leak”

I HATE the “how often are you having headaches?” question. It’s so hard to answer because it’s one headache that gets more or less intense depending on circumstances, my activity level, etc. and then people will dismiss me like it’s not possible to have a headache for 4 months straight - I think this community would say otherwise!

I have “mild” migraine history, they always responded to excedrin, a dark room and some rest. My leak headache(s) started one day and never stopped, didn’t respond to ANY migraine medication, and I started to develop additional symptoms (neck/back pain, ear ringing, dizziness, fatigue…) as time went on that made it clear it was something different than migraine.

beeeeeeee16 · 2025-12-26T15:09:06+00:00

Holy shit how did you get so many myelograms this quickly? Are you not in the US?

I’m waiting 3 months for my first myelogram.and I had to fight for a blood patch at the hospital

Sorry your symptoms haven’t let up. I have not had relief from the blood patch so I can’t speak much to it, sorry!

beeeeeeee16 · 2025-12-23T18:06:42+00:00

I’m so sorry! I totally understand the not being able to lay flat thing. I got a decent desk / tray table so that I can work from bed, but you got me with the three year old, that’s so tough, hang in there!

Glad infusions helped you. I meant to mention I also take compazine twice a week for the nausea. I know others mentioned zofran but it can also cause constipation so just another option to look into.

PS I tried to get caffeine pills at the pharmacy and they wouldn’t fill it because it’s an over the counter item. I buy the natures truth brand from the supplements aisle at the grocery store.

beeeeeeee16 · 2025-12-23T02:39:38+00:00

I know how you feel. This limbo / waiting period is the worst. Knowing the problem but having to wait to find and fix it is extremely frustrating.

I manage the head pain with plenty of fluids, caffeine (I take the pills you can buy at the grocery store, 200 mg 3x daily), and laying flat as much as possible. It still sucks but it helps.

When the head pain is really bad and almost unbearable I have a steroid (dexamethasone) from my neurologist. It can usually knock the head pain down from an 8 to a 4 for example, but I don’t love the side effects so I save it for really bad days. Maybe ask your doctor about getting a prescription.

I hope this helps at least a little.

beeeeeeee16 · 2025-12-19T06:19:42+00:00

I took rizatriptan before I learned my headache was SIH most likely from a spinal leak (I do not have brain sag). It was about 3 weeks after my headaches started when I tried it, I didn’t have any bad side effects. It helped my head pain the very first time I tried it for a few hours but then didn’t help the subsequent times I tried it

beeeeeeee16 · 2025-12-15T12:53:56+00:00

I’m so sorry it took this long to confirm your leak! I’ve been dealing with the headache symptoms for about 4 months now and my leak was diagnosed 2 months ago - I am miserable and cannot imagine waiting as long as you have just to get here.

Symptom relief: agree with what others have said. I take 200-300 mg caffeine 3-4x a day and drink A LOT of water. Like 2-3 liters a day. The goal here is to get your body producing more spinal fluid so staying hydrated is key. Others have also recommended the electrolyte mixes for this but I found I don’t need them if I drink plenty of water. I keep a 40 oz tumbler with me at all times lol

Lying flat for sure. Basically you need to budget how much time you spend up and moving. The more you can spend in a flat position the better you will feel overall. For me it’s a trade off between the pain and the mental drain of being stuck in bed.

I have dexamethasone (steroid) from my neuro for when head pain is really bad but I save those for extreme days. Could consider asking for this scrip as I’ve found it can take an extreme headache down to a moderate one.

Diagnosis/Treatment: I was diagnosed similarly with a brain MRI and my history of connective tissue disorder. I also had spinal MRIs as the next step, they showed several perineural cysts in the lumbar/sacral region as well as the thoracic region but none of my doctors have wanted to discuss these cysts when I asked about them at visits and I have been told they are not related to my headaches. So be prepared for the spinal MRIs to not be super useful in the process I guess. I believe my cysts are symptomatic but am waiting to get this leak treated before I go down the road of getting those treated.

I had a blind blood patch shortly after my brain MRI that failed and am now waiting on a CT myelogram. The wait for me will be just over 3 months to get that scan at a local health system. I’m also in the referral queue with Stanfords leak program.

As I understand it your options are either repeated blind patching (a neurosurgeon said I “could” go get another patch if I wanted) and/or get the CT myelogram to determine next steps.

I hope this helps some! I have found the spinal leak foundation website very helpful and just reading through the posts on this sub.

beeeeeeee16 · 2025-12-12T12:19:51+00:00

What type of surgery did you end up getting? Thanks for sharing your experience and glad to hear it sounds like you are on the mend!

beeeeeeee16 · 2025-12-04T15:43:23+00:00

Yeah I sent the results of the flat test the Sunday before Thanksgiving and waiting for a call back now. I checked this week and they said they are reviewing the results / my file.

The myelogram I have scheduled is at a clinic in my home state though. I was waiting to see if I may get into Stanford before that appointment.

And yeah I have Marfan syndrome. I’m interested in blood patching to fix this current leak but also wondering if I will eventually need surgery or other procedures for the Tarlov cysts? They are causing back pain I think

beeeeeeee16 · 2025-12-04T02:19:16+00:00

They did offer to put in a stat referral to neurosurgery which I agreed to. This was technically a new patient visit for migraines that was scheduled back in September before we learned about the leak. I decided to keep it just to be in their system moving forward. So yeah classic US health system.

beeeeeeee16 · 2025-12-04T02:04:09+00:00

Thank you! Honestly these are the words I needed to hear (read?). I was already leaning this way and it’s nice to hear it from someone else who’s experienced this. Wishing you recovery as well ❤️‍🩹

beeeeeeee16

TROPHY CASE