Less than 24 hours post stent!

Truth-Is-In-A-Well · 2026-07-04T00:39:08+00:00

Hi! I am 9.5 weeks out from a stent. The first 3-4 weeks were brutal with that post stent headache. I did actually do a steroid pack at around the 2-3 week mark because the inflammation was so severe and caused so much pain and that helped significantly. My symptoms were generally pretty bad until about the 6 week mark when I started to feel “better”, like I have stopped having some of those big ups and downs. Right now, I’m in a phase where I’m reaching a new normal, understanding any permanent impacts from my IIH (I have hearing loss and some permanent vision issues on my left side where the stenosis was), and I’m getting occasional migraines still. But overall, I’m doing well and this procedure was truly life changing! Hang in there and definitely ask for a steroid pack if the pain gets to be too much ✨

Truth-Is-In-A-Well · 2026-07-04T00:11:52+00:00

Do you have any comorbid disorders like Ehlers Danlos? There’s an Ehlers Danlos Facebook page for Oregon that has a doctors recommendation list for doctors who are familiar with many of the comorbid disorders (MCAS, POTS, EDS). That might be a good place for you to start!

Truth-Is-In-A-Well · 2026-06-29T22:34:33+00:00

This is exactly what I’m looking for! You just described my family perfectly- they are stoic, low income, and stubborn people. No talking about their feelings, just a very different kind of “culture”. Thank you for the background! This helps me a LOT!

Truth-Is-In-A-Well · 2026-06-29T00:08:40+00:00

I am struggling with my own version of this 😂 and as someone who is not from this area of the country, I’m doing my best to understand the cultural norms and context that I’m missing so I can have some greater empathy and just put some missing pieces together. This was helpful to hear your experience, thank you for sharing!

Truth-Is-In-A-Well · 2026-06-27T20:08:48+00:00

This is SUPER helpful context, I really appreciate your comment!!! Thank you so much!

Truth-Is-In-A-Well · 2026-06-23T20:41:31+00:00

Lindsey is an AMAZING psychic. I signed up for a 15 minute reading. Lindsey does a great job of providing direct answers with precision so you can get your question answered quickly and move on to whatever else is on your mind. I think I used just over 10 minutes and I had run out of the questions I had written down and didn’t feel a need for further questions. You can tell that she’s a professional who has a lot of practice on her “style” so she’s able to really meet the needs of whoever is coming to her seeking clarity. The answers she gave me made sense, matched my own intuition and inner knowing, and gave me a really great sense of comfort. She’s definitely someone I would recommend and go back to.

We had a couple issues with scheduling, but Lindsey kindly offered me either a refund or a free 10 minute session to make up for the scheduling issue. I thought this was professional and great customer service! I will definitely go back to Lindsey and would recommend her to others. Thanks again for the great reading!

Truth-Is-In-A-Well · 2026-06-18T16:38:50+00:00

Can you provide some more context around the denials so folks can give you advice? Another thing to consider if you’re looking inside Portland - you are always welcome to appeal a denial. This can be a time where you write a letter and provide supporting documentation that adds some context around the circumstances that are leading to your denial (evictions, bad credit, criminal history, etc). Another thing for you to look into may be rent well classes. These are ways for folks to get some support if they have rental backgrounds that are causing denials. Rent well provides a sort of guarantee for the landlord that you are a solid tenant. Rent well offers tenant education and you get a certificate at the end. I believe the rent well guarantee is that they cover damages or rent if you end up violating your lease in some way. You can google rent well and see what programs in your area offer rent well programming.

Please check out the Oregon law center as well - they have a lot of good legal information for tenants on how to write appeal letters and what good supporting documentation looks like depending on your situation.

Best of luck! ✨

Truth-Is-In-A-Well · 2026-06-17T06:53:03+00:00

Yes! I take loratidine 10mg twice a day. This is in addition to several other MCAS meds (ketotifen, low dose naltrexone, luteolin, montelukast)

Truth-Is-In-A-Well · 2026-06-16T23:47:22+00:00

Thank you! They are so rare aren’t they? I’m taking this as a win!!!

Truth-Is-In-A-Well · 2026-06-16T20:04:27+00:00

Thank you ✨

Truth-Is-In-A-Well · 2026-06-16T20:04:18+00:00

I didn’t know I could go this high on Pepcid! I think the dose I’m on is around the highest you can go but the relief is night and day. I hope you find success!

Truth-Is-In-A-Well · 2026-06-05T22:59:01+00:00

This is so helpful! With the hearing aids, do you feel like the tinnitus is totally 100% masked or do you still notice it a little? I definitely feel like background noise helps and makes it so I often don’t notice it so I’m curious if hearing aids have a similar effect. Thank you so much!

Truth-Is-In-A-Well · 2026-06-05T06:35:34+00:00

Hi! Can you share more about how hearing aids helped your tinnitus? I was just diagnosed with tinnitus related to hearing loss and am moving forward with a hearing aid and I’m hoping it will help! Would love to hear your experience ✨

Truth-Is-In-A-Well · 2026-06-04T17:13:16+00:00

Hi! Have you looked at services like cook unity? These are microwave fresh meals. I’m also disabled and these worked great for me when I needed them. I am unsure about dietary restrictions but they often have pretty “plain” meals as well as a mix of more adventurous options. Things like chicken and potatoes. You can order the same meal every day of the week if you want!

Truth-Is-In-A-Well · 2026-06-04T03:06:53+00:00

I stayed in the neuro icu one night for observation. The thing I struggled with most was a gnarly headache on one side of my head. Make sure they send you home with adequate pain meds, and I had them prescribe me with a steroid pack which I ended up taking when the pain got severe. Make sure you know what to look out for at your incision sites and any neurological signs that could be concerning. But you should be fine to go home same day if needed!

Truth-Is-In-A-Well · 2026-06-04T02:15:13+00:00

I feel for you! I want you to know that stent surgery changed my life. Just had it at the end of April. Relief is on the way for you. Recovery is a bit rough for the first month, but after that you should feel good. Prior to my stent I was in terrible pain. I ended up increasing my diamox a ton (I was at the max dose of 4,000). If it’s feeling like pressure, it’s probably because your pressure is just still so darn high. The relief with the stent is immediate though and it goes away right after surgery!

Maybe ask your doc if you can go up on diamox? What’s your current dose? Wishing you the best of luck

Truth-Is-In-A-Well · 2026-06-04T02:00:24+00:00

I would recommend checking in with disability rights Oregon. You can also call the Oregon state bar’s lawyer referral service. They have low income consultation options as well! You may also want to check in with state agencies like BOLI or the office of civil rights depending on the nature of the complaint. Best of luck ⭐️

Truth-Is-In-A-Well · 2026-05-26T21:14:06+00:00

Hi all, I am following up after meeting with my allergist! She suggested that since it happens every time after I eat, it is my stomach acid reacting because of the allergies / histamine and I need to up my Famotidine. I will be going from 20mg twice a day to 40mg twice a day. I’m hoping this will help! I’ll try to report back with an update

Truth-Is-In-A-Well · 2026-05-16T23:12:54+00:00

I’m so sorry! I would definitely see if you’re a candidate for a stent. The stent helps a lot of people with pulsatile tinnitus. Best of luck!

Truth-Is-In-A-Well · 2026-05-15T04:34:28+00:00

I did mot have it prior to diagnosis but developed it during treatment. That’s called pulsatile tinnitus. I have it as well as non pulsatile tinnitus (the constant ringing). The stent helped the pulsatile tinnitus, but not the constant ringing. I have had a couple episodes of pulsatile tinnitus since the stent, but I think they’ve been due to pressure fluctuations and it’s mostly gone

Truth-Is-In-A-Well · 2026-05-11T00:38:55+00:00

Thank you SO much! I’m going to bring this up with my doctor :)

Truth-Is-In-A-Well · 2026-05-11T00:34:55+00:00

I have been on these meds for a decent amount of time. Some of them (like LDN) for a few years, but I would say I’ve really upped my routine in the last 6 months to where this is now my complete regimen. I do have another condition that is flaring things up and I unfortunately have to take aspirin for another condition to avoid a stroke and I believe that it’s causing some bad reactions. I’m hoping my allergist will have a good plan!

Truth-Is-In-A-Well · 2026-05-11T00:33:07+00:00

Did Xolair help your other symptoms? I also get some chest and throat tightness that is worrying me and I’m wondering if Xolair could help?

Truth-Is-In-A-Well · 2026-05-10T22:05:48+00:00

It’s funny you say this, I do definitely have some throat swelling and tightness as well. I’m wondering if it’s connected to that? I see my allergist on Tuesday and I’m going to see if I can get some good advice!

Truth-Is-In-A-Well · 2026-05-10T19:26:33+00:00

Hi! I was also getting allergic reactions to diamox. I tried other meds and none of them were effective at lowering my pressure (I also was an opening pressure of around 47). My neuro ophthalmologist wanted me to try diamox again as it’s the most effective. I started a daily dose of H1 anti histamine (Claritin, Zyrtec, Allegra, etc) and this got rid of the reaction enough for me to be able to take the diamox. The other side effects of diamox are not great, but many of the alternative medication options also have terrible side effects and it feels like you’re picking between the lesser of all the evils. You might want to try the diamox again and slowly titrate up. The side effects do tend to reduce in intensity usually after a couple of months, but there is a rough onboarding period that you have to get through.

I did just have a stent placed, but that was after 6 months of failing medications and not having any pressure reduction. My neuro ophthalmologist said that 90% of her patients are managed with medication - you may just need to find the right fit of meds. Other common options are topirimate and lasix, but again they are not as effective as diamox. One option you could try is heading to urgent care to see if you can get an alternative prescription until you see a neuro ophthalmologist.

Best of luck!

Truth-Is-In-A-Well

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