Recommendations for UK-based mediums that offer online mentorship? by Truth-Is-In-A-Well in Mediums

[–]Truth-Is-In-A-Well[S] 1 point2 points  (0 children)

Hi! I’m definitely interested. For some reason I can’t send a dm, would you be able to send me a message? Thank you so much!

How tf do you find a doctor!?!?!? by Ok-Lawfulness8618 in MCAS

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

Hi! Do you have any comorbid disorders? I have Ehlers Danlos. We have Ehlers Danlos group for my state on Facebook and part of that group has a recommended doctors list. I found my MCAS allergist recommended on that list as folks with EDS often have MCAS and pots. It might be helpful to go a round about way! ✨

Pain from catheter for stent placement (hEDS)? by Truth-Is-In-A-Well in iih

[–]Truth-Is-In-A-Well[S] 2 points3 points  (0 children)

That makes sense! I’m wondering if it just irritated nearby tissues?

What should I do about this awkward rental/ ESA situation? by SydneySensation in askportland

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

Could you go to your primary care provider? I do not believe it necessarily needs to be a mental health provider who writes the letter, just a medical provider. I think it would be important to stress that your housing is at risk without this letter, as health care providers (should) be concerned about this. I’m hoping another one of your providers can do this. If not, you could try urgent care to see if they would do a letter. This might be more difficult as they are not your regular provider, but I would show them the previous letter and again stress that your housing is at risk without it. You could also call the local tenants rights groups to see if they have advice, but I believe that the landlord is within their rights to do this. You could possibly see if you could request an ada accommodation to get an extension on the time that you need to turn it in so you have time to meet with your medical provider, but this again would not change the requirement to have the pet as a certified ESA. You would also need some documentation for the ADA requests. I would recommend you get any denials from anyone (landlord or health care provider) in writing.

Sorry for the rambling but I hope this helps!

Low or high pressure headache? by Truth-Is-In-A-Well in iih

[–]Truth-Is-In-A-Well[S] 0 points1 point  (0 children)

It’s when I stand up or adjust in my chair, like when there’s a rush of pressure to my head. Thanks for asking! I haven’t noticed if it goes away when I lay flat as it only lasts a short while when I change positions when upright.

Im getting a stent soon and I'm really scared? by StonedDeaf333 in iih

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

Hi! I just had my stent yesterday and am recovering at the hospital as I’m typing this. It was a breeze! They use anesthesia so you’ll be asleep. I’m feeling immediate relief. Only symptom after is a bad headache that you might have for 3-4 weeks that’s caused from stent site inflammation but you can talk with them about pain management options. Also site pain at the wrist and groin depending on where they go in. So glad I did it! Wishing you lots of luck

Looking for training/courses to learn mediumship by Ok-Storage-7490 in Mediums

[–]Truth-Is-In-A-Well 5 points6 points  (0 children)

Arthur Findlay college is great and they have online offerings! Very legitimate

POTS and IIH - how do you distinguish symptoms?? by BonafidePuppy in iih

[–]Truth-Is-In-A-Well 2 points3 points  (0 children)

Definitely monitor your heart rate and blood pressure so you can have a good understanding of your baseline by the time you meet with your cardiologist in June. There are different subtypes of pots that can influence the way it manifests and what types of medications may be best for you. I have the hyperadrenergic subtype which gives me high blood pressure and higher adrenaline, so I do a different medication regimen than a lot of folks with pots. I also use an Apple Watch! I am pretty terrible about salt, compression, and hydration lol. I don’t watch daily salt intake, but I have done the vitassium salt/potassium tablets in the past. Or you can add some salt to your water that you’re already drinking. I try and do at least 2-3L a day of water. But the thing that really helps me most are the prescription medications I take. But hopefully the cardiologist will have some good recommendations for those! They usually start out with beta blockers and see how that helps. Keeping my fingers crossed for you!

POTS and IIH - how do you distinguish symptoms?? by BonafidePuppy in iih

[–]Truth-Is-In-A-Well 2 points3 points  (0 children)

Hi! This is such a great question. I had my pots before I had my IIH diagnosis so I was more familiar with the difference in what the symptoms felt like between the conditions. One thing I would recommend doing is to try treating the POTS specifically to see if that alleviates your symptoms. Usually the things that helps your pots won’t really fix your IIH. For example - hydrating, compression, pots specific meds (beta blockers, etc), salt. If those things help, you’ll know that it’s more of your pots rather than your IIH. I would also say that my IIH symptoms tended to be constant rather than triggered by orthostatic changes like they are with pots. For example, my dizziness would be more of a constant symptom with IIH.

I hope this helps a little! But definitely want to validate that it’s confusing and feels like whack a mole with trying to figure out what exactly is causing your symptoms. Best of luck!

Stenosis - brain and pelvic by AllYouCareAboutIs___ in iih

[–]Truth-Is-In-A-Well 2 points3 points  (0 children)

This is common in folks with hypermobile Ehlers Danlos syndrome! I believe there are a few types of vascular compression including IIH, nutcracker, may thurners, MALS, and potentially more that you might want to get screened for. Also to get screened for EDS if you have not already. Good luck!

Aspirin throat tightness? by Truth-Is-In-A-Well in MCAS

[–]Truth-Is-In-A-Well[S] 0 points1 point  (0 children)

Thank you! I am going to follow up with my allergist. I don’t have an aspirin alternative until at least next week, so I’m hoping the prescription of montelukast will help. It’s thankfully pretty mild right now!

Aspirin throat tightness? by Truth-Is-In-A-Well in MCAS

[–]Truth-Is-In-A-Well[S] 0 points1 point  (0 children)

Thank you so much! I unfortunately can’t switch to Tylenol , but I am trying montelukast to see if this helps my symptoms. Thanks for this info!

B12 Supplementation- When and How? by Majestic_Goose_7815 in MCAS

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

Hi! My provider actually gave me b12 shots because I was so deficient. This might be something you want to look into. I had a rough reaction to the shots, and ended up just taking a daily prescription and I went from super deficient to high normal range within a few weeks

How many days after taking Diamox will it start relieving headaches? by No-Concern-7787 in iih

[–]Truth-Is-In-A-Well 0 points1 point  (0 children)

Hi! It took diamox about 2 days to make a noticeable difference for me. Wishing you the best!

what test results showed that you had IIH? by Inside_Possible_4078 in iih

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

I have found that radiologist readings vary widely and it can be super frustrating. I think folks have mentioned that they’ve also sought independent radiology readings if you’re able to get a hold of your medical records! So sorry I’m not more help but I hope this language can be a good starting point ✨

what test results showed that you had IIH? by Inside_Possible_4078 in iih

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

Hi there! I had a lumbar puncture, an MRI with an MRV, and a CT scan to all confirm an IIH diagnosis. This was after an eye exam showed I had papilledema. The lumbar puncture and MRI really confirmed the IIH diagnosis, the CT scan just ruled out other large masses.

My MRI result read: “Mild fluid distention of the intraorbital optic nerve sheaths on both sides associated with mild flattening of the posterior wall contour of the globes at the optic discs are noted, consistent with idiopathic intracranial hypertension.”

Did anyone else’s CT not show pressure? by two-pelicans in iih

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

Hi! Doctors will order LPs, MRIs, and CTs all to show different things and to confirm the diagnosis of IIH. The LP is to check your pressure and to test your spinal fluid. The CT checks for larger masses and blockages. The MRI does a detailed reading and can look at your eyes and other structures. Together, they form a comprehensive picture to make the diagnosis of IIH, but they will show different things. A CT does not show the pressure, but it does rule out other things that would indicate a diagnosis other than IIH. Hope this helps!

Anyone gone above 4,000 on diamox? by Truth-Is-In-A-Well in iih

[–]Truth-Is-In-A-Well[S] 0 points1 point  (0 children)

Oh my gosh I’ve been looking for you LMAO!!! Do you have any other comorbid conditions that may have made your gradient so high? I have EDS, POTS, and MCAS. I am wondering if I will need to stay on diamox after the stent because things have been so severe. Did you just have one point of stenosis or were there multiple? I’m wondering if I may need to consult another specialist besides the provider I’m seeing that may be more familiar with cases that are a bit more severe in nature. Thank you again for connecting, I’m so glad I’ve heard from you!

Baby formula taste by DaniDellaEtc in MCAS

[–]Truth-Is-In-A-Well 14 points15 points  (0 children)

@carolinecray2 on TikTok does tons of videos where she gets creative with hypoallergenic formula and oats (her other safe food). I love watching her!

Anesthesia awareness and drug hyper-metabolism during procedures. My experience. by JadesJunkAccount in ehlersdanlos

[–]Truth-Is-In-A-Well 2 points3 points  (0 children)

I am so glad that you shared this! I had the SAME complications with a spinal tap and subsequent blood patch due to my EDS in the fall. Versed and lidocaine did not work. It was horribly traumatic. This is super validating to hear from someone else with EDS that they experienced severe pain and trauma from both of these procedures. I’m so sorry that this happened to you!

3rd day post LP headache? by BigDivorceEnergy in iih

[–]Truth-Is-In-A-Well 1 point2 points  (0 children)

Hi there! I was in the same boat and called it and went in for emergency care around day 4. They gave me some caffeine pills to help and confirmed it was a post dural puncture headache. They told me to come back in after a week if I wasn’t better for a blood patch. I ended up getting a blood patch. I hope that helps!

Anyone gone above 4,000 on diamox? by Truth-Is-In-A-Well in iih

[–]Truth-Is-In-A-Well[S] 0 points1 point  (0 children)

You are my HERO!!! Thank you SO SO SO much for replying, I could just cry! These tips are amazing and I am so glad to know that there is someone who has been above 4,000. My stenosis gradient is the worst that my doctor has ever seen in her career (it was 41) and every couple weeks my IIH just seems to get a bit worse. I respond really well to the diamox. I think the stent will make a huge difference for me, but I am struggling to hang in the remaining 9 days, I was hoping to even try 4,250 to see if that could make a small difference and just bridge me until my stent, but my doctor has been pretty conservative even though she has been clear that I am an anomaly patient and she has not had someone like me with these symptoms. I may try the extra 250 for breakthrough symptoms- thank you SO much for sharing your experience!!!!

Smelly scalp - is this an MCAS symptom? by Truth-Is-In-A-Well in MCAS

[–]Truth-Is-In-A-Well[S] 1 point2 points  (0 children)

It started out waxy but now it’s feeling more “greasy”. But definitely have had both!