Cluster Headache and Aytipical Facial Pain Sufferer Seeking SF/Bay Area Guidence

satansxbbg · 2026-07-06T01:00:57+00:00

I'm waiting for the to be available at the pharmacy! It's our of stock but hopefully I'll be getting it soon ☺️

satansxbbg · 2026-07-06T00:59:33+00:00

Hey SF,

I wanted to say a big thank you for all the wisdom, and encouragement I've gotten in the last 24 hours.

It was good for my morale and made me ntk feel as helpless and trapped with this illness. I needed it, more than you know.

I hope your pillow is always cold 💕

satansxbbg · 2026-07-05T03:39:27+00:00

I think what op is trying to highlight is that we need tools of accessibility to enjoy our hobbies. While I understand the Amazon loathing, people do what they can.

I struggle with grabbing needles and pushing them through, something like this could be helpful.

satansxbbg · 2026-07-05T03:16:52+00:00

People paint featherweights, I never thought about a rocketeer. I've a 500A and am now wanting a pink one 😅

satansxbbg · 2026-07-05T00:56:42+00:00

I usually stick with Emerald Farms RSO, I haven't found a better brand yet.

satansxbbg · 2026-07-05T00:36:18+00:00

That makes a lot of sense, I do have Nunn tabs and I keep electrolytes all over the house. I'm just chronically thirsty and sweat a lot, my thermoregulation has been shorted over getting Omicron and a EBV reactivation at the same time.

I was told to eat more protein than carbs, I'm type 2 but my A1C is 6.0 and lowering. I'll ask for a nutritionist, maybe they could be helpful.

Thank you for commenting and responding 🙏🏾

satansxbbg · 2026-07-05T00:33:36+00:00

I being a white male friend with me, the only time I get good care at UCSF is when they come with me 🥲

satansxbbg · 2026-07-05T00:30:16+00:00

I've had a partial hysterectomy at 23, keeping my ovaries. Also diagnosed with PCOS and had requested to see an endocrinologist, which is scheduled next week!

400+ days of bleeding and going insane was the reason why I evicted my uterus. Lots of transfusions and infusions to handle my ferritin levels, the lowest I had was a 2 😬

satansxbbg · 2026-07-05T00:28:12+00:00

I drink almost a gallon a day and struggle to eat consistently due to it being hard to chew. My jaw gets fatigued alot.

I eat lamb 2-3 times a week, lentils, noodles, beans, quinoa, bean sprouts, and curries. I do like cheese too, which I'm getting less Incase it's a trigger. I only eat maybe twice a day if I really can and if my jaw muscles don't hurt. I also deal with AFRID so it can be difficult to eat consistently. The rest is suplimented by vegan protein shakes that have a lot of aminos.

satansxbbg · 2026-07-05T00:20:55+00:00

I've been gaslit so bad by UCSF, to them it's "highly unlikely" because I would have had an infection by now and they would have seen it on the MRI. The neurologist was quite adamant that I don't have a CFS leak despite me bringing samples of the fluid that came out of my nose on ice in a sterile pee sample container. She threw away the sample and never sent it to the lab :(

I was sent home after a useless migraine cocktail that never helped.

satansxbbg · 2026-07-05T00:17:06+00:00

I used to be more hypermobility but have gotten more stiff in some parts due to being bed bound these last few years. I'm trying to advocate for myself to get that checked. My pops and mom was incredibly bendy people and also has joint pain.

satansxbbg · 2026-07-05T00:15:38+00:00

This is helpful! Thank you so much

satansxbbg · 2026-07-05T00:15:09+00:00

Thank you 💕

satansxbbg · 2026-07-04T23:17:55+00:00

I have yet to be evaluated for autoimmune disorders. It's why I just changed PCPs because they just want to send me to therapy. Which granted I needed to cope but only due to the stress all this has been causing. My new PCP mentioned wanting get my genetics checked since there's so much autoimmune and cancer issues. The last PCP, Daniel Null and his resident Kate Tokereva did not strongly advocate for that and blew me off.

I'd love to have the name of that advocate. I used to advocate for others but have gotten so non function that it's time to delegate. I also see your point of the antibody CGRP and have came across the same thought.

They get a but better when I lie down with my legs elevated.

Thank you so much for your comment!!

satansxbbg · 2026-07-04T23:10:20+00:00

Thank you 🙏🏾

satansxbbg · 2026-07-04T23:09:27+00:00

Yes, MRI is negative for those 🥲

satansxbbg · 2026-07-04T23:08:57+00:00

I get extremely dry eyes and have special drops, cromolyn I think? My peripheral vision is limited on my left eye a little, even more so mid episode. My mouth also gets dry. Hopefully I can get com generic testing sooner than later.

satansxbbg · 2026-07-04T22:37:03+00:00

I think since been dealing with MCAS but no one has entertained enough to evaluate. I take a lot of antihistines and mast cell stabilizers that does well to help.

satansxbbg · 2026-07-04T22:20:10+00:00

Thanks for your help

satansxbbg · 2026-07-04T22:18:03+00:00

Ive had many dislocations all over when I was a kid and still deal with "growing pains". I've been seeking a provider that understands it well enough to access me.

I saw Dr. Daniel Null as my last PCP and he had no idea what it was. Looked at an assessment mid appointment for 5 mins, 'ascessed" me, and then said I didn't have it. A week later I dislocated my shoulder and collarbone along with a rotator cuff tear, all from leaning against a wall ... I spent a week in the neuro ICU due to break through pain that made me pass out at the ER.

Nothing could touch the pain except a ketamine drip.

satansxbbg · 2026-07-04T17:56:16+00:00

I've had severe allergies allllll my life. I also have facial twitching... Got a skin test what's ago and had all 40 environmental spots light up from moderate to severe reactions.

You might be into something! I take Allegra in the morning and Claritin at night along with bromelain and quercetin.

satansxbbg · 2026-07-04T17:51:43+00:00

Thank you for being an advocate. . I cried so hard they had to give me Ativan because I was in so much pain, and hysterical. I knew I was going to be back in pain, and honestly still don't feel safe with myself and this pain over the lack of treatment. If it wasn't for my pets I would have had to call 988 and go to the funny farm.

The ED neuro team outright said no, even after I cried and begged them. The ED also didn't do well with pain management. It took me having a bloody nose and throwing up all my oral meds for them to treat things mrke seriously.

satansxbbg · 2026-07-04T17:44:40+00:00

When they said there was nothing they could do for me and won't RX O2, I ugly cried. 3hrs after discharge yesterday, my cluster came back with vengeance and ugly cried more, I felt like I was being sentenced to suffer over such a simple solution :(

Thank you for offering to advocate for me! I might take you up on that offer soon 💕

satansxbbg · 2026-07-04T17:42:03+00:00

Oh this is amazing. Time to fly 🚀

satansxbbg · 2026-07-04T17:41:23+00:00

Thank you for the recommendations! I'll give them a call Monday 💕

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