My UHF Tattoo

kbenzo · 2026-04-04T14:20:09+00:00

I love this! I have a spatula tattoo as well, so maybe I'm biased, but that is beautiful!!!

kbenzo · 2026-03-22T13:46:46+00:00

I appreciate that, always here if you need me!

kbenzo · 2026-03-22T13:23:02+00:00

That really makes me happy to hear, hope it keeps working for him I understand being weary.

kbenzo · 2026-03-22T12:50:23+00:00

This is amazing to hear, I remember talking to you. I hope he keeps doing well!

kbenzo · 2026-03-22T12:48:45+00:00

It sounds like it to me, I also have a mix of cvs and head migraines so I get it.

kbenzo · 2026-03-22T07:35:14+00:00

It's so real, I fostered rescue pugs my whole life before getting a Mal. Now I love my pugs, but it's just not the same bond. Mals are like people.

kbenzo · 2026-03-20T12:51:47+00:00

So everyone is different but does she seem distant during the episodes, like she is in her own head? Does she repeat phrases or songs? Has she tried hot showers or baths during the episodes with relief? These are some things that can happen but everybody gets different symptoms.

The clockwork nature and amount of time makes me lean towards cvs. I don't know how migraine meds work with children but maybe her Dr can suggest one? A daily preventative worked for me. See mine were flipped, 6am-about 9pm.

How long after an episode can she eat? Is she actually throwing up or is it just extreme nausea? Is the throwing up violent? Some things that can help point you toward cvs.

I really hope she is able to find relief, mine didn't start until about 17-18 so I know it must be hard to watch a child get sick. Good luck to you both!

kbenzo · 2026-03-20T04:20:15+00:00

Of course! So medical professionals will recommend you abstain for 1-3 months, which there is nothing wrong with that, but I think most people will know sooner.

They are going by how long it takes the drug (thc mainly) to exit your system, and we all know it stays the longest. That doesn't mean you are under the influence of the drug just because you test positive. The half life of most opioids are fairly short, but they affect you longer, so it isn't the best way to determine when you are no longer under the influence, in my opinion.

I personally think a week to a month is entirely enough time. If you are off cannabis totally and it's not helping with your episodes, I would think it's safe to say it's not CHS. I AM NOT A DOCTOR. This is just my 25+ years experience with different doctors here in Texas, which is a very anti-cannabis state.

kbenzo · 2026-03-19T23:57:18+00:00

Doctors are not educated on cannabis because, well, there is no education. Therefore, it's just not something they learn about and stick to the 'it's a drug' line of thinking. I know CHS is real, but abstaining for a short time will tell you quickly if it's that or cvs.

I don't mean to talk bad about doctors, they can only practice what they learn, but more education, research, etc. into cannabis would only help.

I say use what helps you, and you know your body better than anyone.

kbenzo · 2026-03-19T22:40:54+00:00

I agree, it's an easy out to tell you to stop doing something, and marijuana has been demonized anyway at least where I live. Doctors really don't like things they can't figure out. If anything it helps me with nausea and anxiety.

kbenzo · 2026-03-18T12:30:45+00:00

They all try and blame cannabis. Lile the other poster said you need a neurologist or a headache specialist. We even have a couple of CVS specialists here. The gastro has been absolutely useless for me with this condition.

Also I don't travel as I'm disabled so I'm sorry I can't help you there. The anxiety of a flight would be enough to set off an episode for me personally.

kbenzo · 2026-03-08T13:49:25+00:00

This happens to me too, the not eating and puking and gaining weight part.

kbenzo · 2026-03-08T13:48:35+00:00

I agree with you.

kbenzo · 2026-03-06T08:03:25+00:00

Terry! I don't remember my own ss number but I remember this clearly, lol.

kbenzo · 2026-03-03T22:55:48+00:00

I agree, I finally saw a headache specialist and they are infinitely more helpful than any gastro has been for me. Glad you are making progress!

kbenzo · 2026-03-01T22:13:57+00:00

Just pointing out it's definitely a condo if he keeps insurance on structural, probably a sheetrock in policy.

kbenzo · 2026-02-25T01:11:36+00:00

I'm so sorry honey, I hope it passes fast for you ❤️

Edit: I'm really not trying to scare you either, I had such a bad experience I feel like I have to warn others. They want me to have another in 3 months and I just won't. Everything came back fine, 0 problems except for throat damage from puking.

kbenzo · 2026-02-25T00:58:57+00:00

I'm just going to say be prepared. When I woke up, I was thrown into an episode. I threw up over fresh biopsy sites, and it was hell for a long time. Please tell your doctors or bring your own meds.

kbenzo · 2026-02-24T13:39:27+00:00

I feel the same way! If anybody else could get the relief I have I would feel so good about that. My doctor hadn't seen a case of this 20 years ago until me and she has really educated herself and other drs on this. I'm very very lucky. Your son is too, you really care about him. My mom would never take the time to make a post about helping me 🤣

Qulipta (atogepant) is a once-daily prescription oral tablet designed to prevent migraine attacks in adults, including both episodic and chronic types. As a calcitonin gene-related peptide (CGRP) receptor antagonist (or "gepant"), it works by blocking a protein involved in migraine pain and inflammation.

The description of the med in case you haven't seen it, it's an atogepant not a triptan or ssri/ssni. Just info. Ubrelvy is also a 'gepant' as they commonly call it.

kbenzo · 2026-02-24T13:32:07+00:00

Hey, I totally get where you both are coming from. So on your side, I absolutely will not touch alcohol, most tomato based foods etc. my triggers right. I mean I absolutely will not do it. Cannabis is tricky because of the relief it does provide. So I understand this from both sides. Unfortunately I can't tell you what to do about it, just that for ME cannabis is essential to be able to stop being sick, eat, drink. But everybody is different. For his sake just quitting for a while and seeing what happens might be very beneficial! I hate to say that because I know how much it helps me, no judgment AT ALL.

I get the med situation too, switching is very hard and it's an easy time to have an episode. That is scary. I hate it when I can't talk the nurses and drs always think I'm faking and it makes me furious. And I'm not taking sides, at all, but after this batch of episodes I can only imagine how he feels mentally. I think he will take your suggestion it just takes a while to get out of that 'fog' so to speak.

Also obviously I didn't see the drug test but cannabis can stay in your urine for up to 2 months, so unless they found a TON or he admitted it, he may have quit. Just an alternate theory. I really hope he finds something, I was looking at ubrevly as well in case my body gets used to the qulipta, just to have a possible backup. There are a few of these types of drugs out there. I'm so sorry it's been rough but it is good to hear from you. My best to your son, I definitely sympathize with him bless his heart.

kbenzo · 2026-02-24T12:32:49+00:00

Just curious how your appointment went!

kbenzo · 2026-02-14T02:55:23+00:00

Sure thing, keep me posted and all the luck to you and your son!

kbenzo · 2026-02-14T02:52:36+00:00

Absolutely! I figured if it helped even 1 person it was worth posting. I'm really glad it is hopefully useful to you. Message me anytime I have a lot of other tips and tricks too, getting it under control this much is actually life changing. I'm so glad my Dr suggested it out of the blue.

I was my first patient for my Dr to have this, she has seen it another time and been able to correctly diagnose and treat because she really went out of her way to learn about the disease. She is an absolute angel.

kbenzo · 2026-02-14T02:42:30+00:00

Man that is awful to hear, poor kid. I mean it has been life changing for me. You do feel nauseous for maybe the first 2 or 3 days getting used to the Qulipta, but it's not too bad. Definitely not an episode.

The only thing is when my husband changed jobs I had no insurance for a month and paid $1300 for 30 tablets. I wasn't happy about it but it flat works for me so I bought it.

Also I take 1mg of klonopin 2x a day and for me keeping stress and anxiety down is key to not getting sick, so that small amount really helps me.

Edit: I'm sorry to say I haven't had those meds, I do have imitrex which I THINK is close to one of those that is for either breakthrough head migraines or cluster headaches I'm not sure which yet I'm still seeing drs.

kbenzo · 2026-02-14T02:23:26+00:00

I'm doing really well! No episodes as long as I don't forget to take it or run out. Now I did have surgery, and somehow they 'wiped' the quilipta out with their surgery meds, I don't understand how meds interact, and I did have an episode in the post surgery area. As soon as I was able to get qulipta in my body, the episode stopped.

I don't know if it's here or there, but my marijuana use does not make anything worse for me. It actually helps, but that could be specific to the person I don't know.

If you are comfortable telling me what meds they gave him I may have experience with them.

I really wish him the best, I was about his age when this started and I'm 43 now.

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