u/starsareblack503

Hell...

Earlier this week, I posted this: https://www.reddit.com/r/iih/s/xQiXCy15rd and several of you suggested going to the top research hospital in my state if my Neurologist continued to let me down, symptoms got worse and yesterday, my mom and I went. (Also a message from Neurologist saying they can no longer help me outpatient bc of serious symptoms and to go to ED now).

It was 1 of the worst ED experiences I've ever had and I've been 20+ times in just the last year bc of chronic illness and my care team making me go.

Yesterday late afternoon, I showed up for the 1st time ever to the top research hospital in state which is not easy to get to. I went to the check in desk, described my symptoms and the staff legit freaked out. The minute I said loss of sensation in my face, loss of vision worse in right eye, pulsatile tinnitus and a stiff neck (just a few of the many things happening), I was pulled right back. NO WAITING... STRAIGHT TO TRIAGE... which yall know means business bc it was packed and a level 1 trauma center.

I have nurses all around asking me meningitis and stroke questions and all the things being done - bp, fever check (none), dozens of Qs coming at me... I am then rushed to a room but then they switch me to a different negative pressure (?) room for infectious diseases.

This really dismissive nurse comes in in full N95 + PPE and talks to me like Im a child (I am Gen X so older than her), takes a lot of blood and then looks at my allergy list, proceeds to tell me I have never experienced real anaphylaxis bc Ive never been intubated (what the fuck does that even mean bc my epi works so no idea what she was on) and that I am not actually immunocompromised bc I dont have "neutropenia" (???). I said I am IgA deficient and on and off steroids + immunosuppressants and very angry at this point and my Immunologist and Rheum would disagree with her.

Then we are left in the outcast room, locked in for 4 HOURS. I have to beg to go pee and when I am let out, I get yelled at for opening the door bc of "infectious disease" (I dont have a fever and my neck has been stiff for 4 weeks, how TF would i have meningitis that long). We are treated like pariahs.

After hours, the emergency physician and resident finally come in and say my MRA was fine (I had it Wednesday bc there was a same day cancellation so no 2 month wait) and that they have no idea what to do with me bc my symptoms dont make sense so they need to page Ophthalmologist (not Neuro-opthalmologist) and Neurologist.

These 2 "specialists" finally come in and the Ophthalmologist says no Papilledema (I know, my eye clinic checked on Monday) and that whatever is going on is in my brain (no shit).

So then Neurologist steps in and asks me so many questions including Qs about the increasing fluid leaking out of my nose. They said they could test it but they only have a glucose test that isnt very reliable and they need to find the hole first (if there is a hole) from the intracranial hypertension (so FINALLY someone believes me) but that the MRV cant be done in the ED, only CTV and that I should just wait for the stat MRV my pcp ordered 2 days ago which is this coming Wednesday. No one has bothered to order a brain and neck MRI, no one bothered to do a regular CT for internal brain bleed (I legit had stroke symptoms yesterday, half my face went numb w/sudden vision loss). I said does an MRV find a CSF leak and show ICP and they are all yes (I see it may not and that I do need a brain MRI). The Neurologist walks out with my severe symptoms and just says wait, even with a suspected cranial CSF leak at this point and no imaging.

WTAF.

At this point, it is almost 2am and we are locked back in the room, I hadnt eaten all day, my mom is cancelling her vacation plans today and I am just about to rip my IV out.

I push the call button and ask to be discharged bc I would rather die at home than have subpar care from the best hospital in my entire state.

And NOT ONCE did they suggest an LP.

What now... Yall I am so angry. I have been up since 9am yesterday and spent 10+hours not getting anything but basic labs I can get any day and being exposed to very sick people as an Immunocompromised person with a sus cranial CSF leak.

How do you do this... My Neurologist... is clueless. My Neuro-otologist and ENT all say go to Neurologist.

Im exhausted. Thanks for reading if you did.

ETA: the emergency physician that took over came in at the end right before discharge... I looked at them and said why no imaging to rule out brain bleed or CVST etc (bc MRA doesnt do that) and they turned it back on me to get the heat off them being dangerous in their poor workup and said "CT is unnecessary radiation" and Im all so youre letting me go without checking for a clot...

Whatcha buyin ?

This time last year (2025), I got an Oura 3, Oura 4, Samsung and Ringconn and did the 30 day challenge. Sent everything back but Ringconn. Would've stuck with Oura but they need to make half sizes for people like me.

The year before Prime Day 2024, I purchased the UH and we all know what happened there...

ETA:

Current deals:

Ringconn 2, Oura 3 and Oura 4 all on prime day specials

2nd edit:

Everyone and their mom copies the prime day deals so check places like Best Buy, Costco and brand sites directly to see if low prices too

I checked the pinned post before posting and pretty sure this meets criteria as Neurologist suspects IIH.

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After I went thru a massive iron infusion for IDWA (I was stage 2) about 6 weeks ago, I started having sporadic Pulsatile Tinnitus that same week. I figured it was my body's reaction to the iron (the hemodynamic changes) and was more focused on the other side effects that sent me to emergency dept multiple times.

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Cut to 2 or so weeks later. The PT was getting worse and I started having vascular headaches way outside my normal type of headaches (cervicogenic mainly), intense all over head pressure, a very stiff neck, hearing loss, blurry vision and flashes of light, and clear fluid leaking out of my nose, worse when when bending forward which includes a weird metallic taste.

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Cut to 2 days ago. I show up for my scheduled Neurology appointment for my monthly headache injections, which is really supposed to be a quick 5 min. procedure, and politely ask my headache Neurologist about the increasing Pulsatile Tinnitus. This provider gets a look of panic in their eyes and literally sits down and goes onto Google. I ask if this is IIH (bc I know I was at risk for it being stage 2 w/iron deficiency) and they were all over the place - but agreed something is very wrong - and finally just ordered an MRA, no other MRIs. Did offer the LP but I said not yet bc of my serious back issues and complex health.

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I knew I had to have my eyes checked again (the low ferritin was causing eye issues also so had my optic nerve checked in March) and have that appt in a few days but calling tomorrow to try and make it same day.

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I feel like my Neurologist is overwhelmed and is not able to get all the things done and fast. The wait for MRA is 2 months (!!!). This is ongoing 6 weeks now, growing like a snowball downhill, and I'm scared especially with the neck stiffness and being immunocompromised.

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When folks come to the sub with anxiety et al and no history of clots, IMO the best answer is always some version of the awesome mod copypasta, which includes advising those coming here with symptoms to go to hospital.

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If one of us comments anything other than something along the lines of the copypasta, this is likely fueling the person's anxiety and/or possibly deterring someone from seeking medical advice.

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As long as these posts are allowed, can we at least not possibly fuel more anxiety or (accidentally) deter those from seeking medical help ?

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Health anxiety is real and also using the internet to search clot symptoms is directing folks to this very group on the front page of at least google.

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I know folks want to be helpful but anything other than some version of the copypasta doesn't seem helpful or neutral but goes into harmful.

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I just got a message from my non-invasive Vascular Specialist (not a surgeon) saying I have to change my compression that I wear whilst in bed due to ongoing mobility issues during recovery from a procedure.

Said it's a special sock 8-18 mmHg anti-embolism stockings (which I had never even heard of). All these years and they change their mind on the type I need to wear specifically in bed. Whomp whomp.

Anyways, I am a rather petite person, hard to find a good fit even after measurements taken plus medical supply stores in my area have not been great for many years.

Does anyone hear wear this specific type and have ideas? I looked on Amazon and meh.

Costco no longer sells the kind I love and we tried to order a similar one from their website but it wasn't actually memory foam and turned out to be rock hard. Returning that huge thing was a PITA but easier than online returns.

So... am trying to find out if anyone knows where they are sold IN-STORE to feel them, sit on them... whatever.

We have called and gone in to a few local mattress stores and they do not sell them in-store.

Also desperately tried a few off Amazon and a bigger PITA to return them.

As someone with severe back issues, I have to bring a memory foam topper with me when I travel.

Any ideas locally? Desperate here.

Hi everyone. I have done a lot of reading here since receiving my infusion (half dose per my request 500mg) 6 days ago.

Because symptoms are getting worse every day starting at 72 hour mark post-infusion, I went to the hospital.

I had to beg for the serum phosphorus test mentioned here (physician: "That is not something we do in ED but whatever, fine") and my phosphorus (for now) is normal, thankfully.

The hospital did an EKG, CBC, CMP, Magnesium, venous blood gas (never had this). Most everything was good.

Am wondering if the sudden shortness of breath + chest pain (a pinching kinda twinge in my heart) starting on day 5 and continuing today day 6, breaking out in a sweat off and on w/chills, head pressure + worse tinnitus, feeling like going to pass out + dizziness, high heart rate, insomnia, headache, intense muscle (esp calf cramping) and all over bone pain and more is something those w/out low phosphorus experienced ?

I was a 7 ferritin, RBCs were low but my Hemoglobin was holding out a few weeks before the infusion.

I have a lengthy history of chronic illness and twingy sharp chest pain + some SOB happens with my MCAS reactions but we did heavy pre-meds orally and via IV and I am continuing my H1 and H2s every day.

This is intense. I have had other brands of iron that caused reactions during infusion and day or so after but nothing that sat for 72hrs then it's like I hit a brick wall.

I have heard of the "iron flu" but this is over the top. Every day I feel worse. I am doing prescription level electrolytes + magnesium supplement + making sure rich phosphorus diet and yet here I am.

The hospital physician just ended up googling Monoferric right in front of us and said: "Infusion side effects. Bye."

I searched the sub before posting but did not find anything.

Am scheduled for an infusion very soon and have zero experience with this clinic. There are no patient reviews anywhere and there are no photos of the clinic either.

One of the questions I have is it individual rooms or like Providence where it's a huge floor of HemaOnc chairs? (I ask bc I am immunocompromised and I have never understood why immunocompromised patients are put right next to each other when receiving life saving infusions but I digress).

All I know is it's on the 11th floor of Bldg 2.

Thanks for any insight or sharing experiences with the clinic.

Iron deficiency w/out anemia. RBCs tanking but Hemoglobin holding on as of labs 4 weeks ago. Ferritin is low single digits. Super anxious and coming for advice.

Why extra anxiety ? The Infusion clinic is new to me, my MCAS was not severe with the 3 last brands but we are doing at home pre-meds starting tomorrow then morning of and then IV pre-meds.

This brand will be Monoferric.

I failed Infed 2020 (Iron Dextran - partial throat closure, delayed reaction by \~1 hr after leaving clinic). The rest I didnt write down (MCAS not something I knew about back then).

I then failed Feraheme 1.5 years later. (Not sure if this was true anaphylaxis but I was really struggling, likely it was close to that, during to where it was called off by 6 nurses who freaked out by all the things happening)

And the last one tried was Iron Sucrose (2 years ago). I had the least reactions to that one BUT the pre-meds (at that time) were brutal on my system so I got thru 2 infusion rounds and then just walked.

Somehow all 3 were labelled "anaphylaxis" even tho I now have learned the Iron Sucrose (at least) was likely a Fishbane-reaction + "normal" iron infusion reactions days after. The clinic literally banned me from coming back.

Of note: I am going into the infusion with a borderline low Vitamin D (30-ish as of 4 weeks ago) which I have heard can make things harder but have not been able to do a drug challenge for my Vitamin D3 supplement leading up to this.

Newer Hematologist, not present day of and brand new clinic w/new nurses, said hard *no* to any benadryl bc apparently makes iron infusion reactions worse (previous clinic pre-medication and recovery drug). I found supporting literature that backs the no benadryl.

Also, MCAS Immunologist firmly hates oral prednisone before or after. I am doing IV famotidine + solumedrol day of and increasing H1 and H2s + adding tylenol day before, day of and days after.

What else am I missing ?

Oh, I advocated hard for myself and said only going to allow attempt of half the Monoferric bc I am a smaller person and my ferritin is lower single digit.

Am ONLY attempting this, after putting it off for almost a year, bc my friends, it has become DIRE. I am unbelievably sick and my Dysautonomia (likely POTS) is very very bad right now. My heart is acting like it's in heart failure, my lungs are struggling, my kidneys and more.

Its literally do or die.

Please dont add to the anxiety. Am just asking if I am missing anything, for those who have gone thru this, as my last infusion attempt was in 2022 and I did not have severe MCAS and Dysautonomia (likely POTS) until blatant signs showed up 2023-2024.

10 months ago I had commented under someone else's post and have been asked by several of you if I had done it yet so this is me posting to say the countdown is officially on.

Why extra anxiety ? The Infusion clinic is new to me, my MCAS was not severe with the 3 last brands but we are doing at home pre-meds starting tomorrow then morning of and then IV pre-meds.

This brand will be Monoferric.

I failed Infed 2020 (Iron Dextran - partial throat closure, delayed reaction by ~1 hr after leaving clinic). The rest I didnt write down (MCAS not something I knew about back then).

I then failed Feraheme 1.5 years later. (Not sure if this was true anaphylaxis but I was really struggling, likely it was close to that, during to where it was called off by 6 nurses who freaked out by all the things happening)

And the last one tried was Iron Sucrose (2 years ago). I had the least reactions to that one BUT the pre-meds (at that time) were brutal on my system so I got thru 2 infusion rounds and then just walked.

Somehow all 3 were labelled "anaphylaxis" even tho I now have learned the Iron Sucrose (at least) was likely a Fishbane-reaction + "normal" iron infusion reactions days after. The clinic literally banned me from coming back.

Of note: I am going into the infusion with a borderline low Vitamin D (30-ish as of 4 weeks ago) which I have heard can make things harder but have not been able to do a drug challenge for my Vitamin D3 supplement leading up to this.

Newer Hematologist, not present day of and brand new clinic w/new nurses, said hard *no* to any benadryl bc apparently makes iron infusion reactions worse (previous clinic pre-medication and recovery drug). I found supporting literature that backs the no benadryl.

Also, MCAS Immunologist firmly hates oral prednisone before or after. I am doing IV famotidine + solumedrol day of and increasing H1 and H2s + adding tylenol day before, day of and days after.

What else am I missing ?

Oh, I advocated hard for myself and said only going to allow attempt of half the Monoferric bc I am a smaller person and my ferritin is lower single digit.

Am ONLY attempting this, after putting it off for almost a year, bc my friends, it has become DIRE. I am unbelievably sick and my Dysautonomia (likely POTS) is very very bad right now. My heart is acting like it's in heart failure, my lungs are struggling, my kidneys and more.

Its literally do or die.

Please dont add to the anxiety. Am just asking if I am missing anything, for those who have gone thru this, as my last infusion attempt was in 2022 and I did not have blatant severe MCAS and Dysautonomia (likely POTS) until glaring signs showed up 2023-2024.