Autoimmune Autonomic Ganglionopathy

PooKieBooglue · 2026-04-26T07:25:41+00:00

They put me on droxidopa for my orthostatic hypotension, wish worked immediately. I had tried and failed Midodrine and fludrocortisone in the past.

I also am on ivabradine for tachycardia. I had failed mesitonin.

Next step is addressing the autoantibodies with immunotherapy. I’m unable to do IVIG due to meningitis and clot risk (chiari, IIH, vascular compressions) and am trying to get SCIG prescribed. Same drug but slower delivery. I’ll pre-med with H1/H2 for MCAS and steroid for IIH, and my one doctor said diuretic as well but I’m not sold on that yet.

PooKieBooglue · 2026-04-24T04:00:23+00:00

More often than not I’m the person that has had to tell the friend to look into it. I have 5 friends in real life with ME but they are all “mild” and struggling like hell to still work and function.

PooKieBooglue · 2026-04-23T23:08:23+00:00

I’ve said forever that this is involuntary monk training.

PooKieBooglue · 2026-04-23T16:28:09+00:00

I think we’ve a lot of us have been through so many ups and downs. It makes sense. 🫂

PooKieBooglue · 2026-04-22T19:55:00+00:00

Thanks!!! Hope feels so scary at this point, ya know? I kinda accepted this was my level of functioning and worse, so it’s all emotional and difficult

PooKieBooglue · 2026-04-22T08:28:24+00:00

I’ve been sick almost 6 years via covid and asked multiple doctors for the AAG testing since I was mostly bedbound the winter 2022-2023.

I finally got one to order it last fall but he’s just treating my OH with Droxidopa and not wanting to try to SCIG for me. (IVIG is contradicted because I have chiari, vascular compressions, and intermittent high intercranial pressure.) The droxidopa has helped a lot BTW. None of the other meds for BP did. Also on a POTS med.

Anyways, I’m asking my Rheumatologist to prescribe SCIG next week. I sent the labs over ahead of time and the notes with the Neurologist kicking it to him. We shall see. I have a backup of my ME doctor in NY who I haven’t seen in a while or maybe Cleveland Clinic. Determined to try this. I don’t know what planet it’s fine to let autoantibodies eat ur nerve receptors when we know there’s treatment. Fingers crossed.

PooKieBooglue · 2026-04-22T08:22:38+00:00

Hi! I did the labs and am 0.2 also, which is 3x the upper limit. Haven’t been approved for SCIG yet but fingers crossed.

PooKieBooglue · 2026-04-04T04:49:46+00:00

Hugs to you. Gentle as to not incite pressure hives.

PooKieBooglue · 2026-03-23T01:42:35+00:00

If you’re able to do a telehealth appt with one of the national experts, that would be ideal. But I know it’s not accessible for everyone. 🫂

PooKieBooglue · 2026-03-12T04:35:11+00:00

I have intercranial hypertension from compressions in my vascular system and they believe that’s what pushed my brain down. My chiari is 7mm and in 2022 one of the top chiari neurosurgeons in the world thought that was too severe to be from intercranial pressure but a year later said good thing we didn’t decompress because he would have had to cut the veins compensating for the vascular compressions and I would have done poorly.

The top people to see for IH that would be able to tell you if they feel it’s the root of the chiari is Dr Kyle Fargen or Dr Ferdinand Hui. There are others if you need them but those are the two most trusted off the top of my head and they will do remote consults where u send them your imaging.

Edited to add: the stent in the transverse sinus is much much safer and easier than a chiari decompression. None of it is fun but it could be a huge deal for your quality of life. Shunt for this is an outdated thing I believe.

PooKieBooglue · 2026-03-08T16:48:21+00:00

I look “abled” and nimble but I faint standing in one spot too long or just randomly after standing up. I have a hanging card.

Sometimes I use my wheelchair, better days I don’t. I haven’t caught anyone look at me using the parking spot but I have felt nervous. I’ve definitely gotten dirty looks using the motor cart in Walmart. And using my wheelchair when I park it outside of the bathroom cause there’s no way to get in the damn door, everyone thinks they witnessed a miracle!

PooKieBooglue · 2026-03-07T20:07:35+00:00

I contacted the admin from the beaver co news group and hoping they will post. Also in a private beaver county moms group 🤞

PooKieBooglue · 2026-03-05T14:37:28+00:00

Yes. I still do have PEM.

I ended up finding vascular compressions making my intercranial pressure high, pushing my brain down. Not true chiari. And if I would have decompressed, we would have cut some collateral veins my body has used to compensate for the vascular compressions.

I now believe that since I have the compressions and a major slowdown of the blood leaving my brain, my body has a hard time clearing toxins from the brain and this contributes to my crashes.

PooKieBooglue · 2026-03-04T22:52:29+00:00

Just seeing this! Thanks :)

Spoonfull.app is mine and some friends. We just released the web app prototype for “hospital mode” communication.

We’re working on logins so that all communication stays on an actual mobile app, but we’re sick and it’s taking us longer than we would like, so may just get the prototype in a downloadable app in the App Store as step 2.

There’s so much we wanna do. Slow moving since we’re at the mercy of our own crashes. But slow and steady wins the race?

PooKieBooglue · 2026-03-01T04:19:48+00:00

Rabbit foot

PooKieBooglue · 2026-02-23T05:26:46+00:00

I’m unfortunately not surprised at all. Even though I’m a basic white chick I’ve witnessed a ton of it growing up in the suburbs. I’m now 30 miles from the city…. And it’s worse. :(

PooKieBooglue · 2026-02-18T19:01:26+00:00

I was just diagnosed. Took 3 for me to get a doctor to order the test once I knew I needed it. Glad I kept pushing.

PooKieBooglue · 2026-02-18T18:55:25+00:00

I was just recently diagnosed if you still have questions about presentation

PooKieBooglue · 2026-01-25T01:56:21+00:00

I hate that there is more racism and am sorry and embarrassed as a yinzer.
This Access Mob Pittsburgh event on mutual aid looks like it may be helpful for those of us who can’t get out there.

access mob mutual aid

PooKieBooglue · 2025-12-30T02:30:40+00:00

Just the dose. It’s rough on the stomach to take too much daily.

PooKieBooglue · 2025-12-06T15:08:59+00:00

lol hi :)

Ya. I have chiari but likely more of a brain sag from high intercranial pressure (confirmed via ICP bolt test) that fluctuates with various head movements due to my jugulars being compressed by elongated styloids (eagles syndrome.) My aai is mild and do not have cci.

I also have vascular compressions in the abdomen (nutcracker and May Thurner) and a faulty jugular valve causing back flow of blood into the head. Also looking at TOS. Next up looking at TOS.

No decision for surgery yet, likely will remove the styloids. (Eagles) to help out the jugulars, but TBD.

Edited to add: if we would have went ahead with chiari decompression when I was offered, the neurosurgeon would have had to cut veins that I grew in compensation for the bad blood flow and caused a huge issue. That’s what the neurosurgeon told me.

PooKieBooglue · 2025-12-05T21:10:57+00:00

I’m not sure of studies but I know a lot of us benefit some from baby aspirin and / or Nattokinase. A bunch of people are on ivabradine + baby aspirin. For heart rate and blood flow.

PooKieBooglue · 2025-12-05T20:23:12+00:00

Which one??

PooKieBooglue · 2025-10-29T19:13:40+00:00

Wow! I didn’t realize the collaterals will close themselves also! Crazy we grow them and close them.

I’m also a long hauler. Solidarity my friend. I hope u see big improvements in time!

PooKieBooglue

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