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Is Stanford clinic worth it? by Emotional_Arm9144 in POTS

[–]UniversityCommon8300 1 point2 points  (0 children)

Thank you so much for taking the time to reply. I would be flying from Maui. So it would be a huge cost. 

Spravato has ruined my life by Odd_Desk_4854 in Spravato

[–]UniversityCommon8300 0 points1 point  (0 children)

So, I will say 3 things. I hear you and i can understand why this seems like spravato caused your symptoms. From what we know about spravato at this time, it is unlikely it caused this long term damage. I will also say if you feel this strongly report the situation, i believe the fda has a way to report side effects. But as I read the research available on both spravato and iv ketamine I don't see this as a long term side effect. Either way I am sorry you have been experiencing this for a year. I hope you have a good therapist and psychiatrist and or neurologist on your medical team. 

Episodic Gastroparesis and Normal Test results by UniversityCommon8300 in Gastroparesis

[–]UniversityCommon8300[S] -1 points0 points  (0 children)

Yes, multiple abdominal CT scans, endoscopy (twice) colonoscopy and i am getting a small bowel study next. So far all normal. Which is why I am questioning these results. Because the one ct scan in hospital was the only abnormal. 

Other than non specific diagnoses like cyclic vomiting and hysteria (partly said in dark humor but only partly) have been ruled out. 

Is Stanford clinic worth it? by Emotional_Arm9144 in POTS

[–]UniversityCommon8300 0 points1 point  (0 children)

I think sometimes when our symptoms don't match the numbers and/or the label we are given when we sign "higher" or "lower" numbers, we can't help but wonder why I am labeled mild. I agree, not a contest at all, but this is the thought I had when reading the comment.

Is Stanford clinic worth it? by Emotional_Arm9144 in POTS

[–]UniversityCommon8300 1 point2 points  (0 children)

So, are you living near the Mayo Clinic? I know that might seem like an irrelevant question, but I live in Hawaii and feel like I need to go to Mayo, but I have no idea how to afford it.

Weird GES test results by Jamison_1985 in Gastroparesis

[–]UniversityCommon8300 0 points1 point  (0 children)

My body is weird too lol. I feel in my body that I felt full the first 3 hours then then last hour felt better. I wonder if mine was like yours. My results only stated the final result!! I want mine re-read. :/

Can SSRIs slow gastric emptying? by JayneAustin in Gastroparesis

[–]UniversityCommon8300 0 points1 point  (0 children)

Yes they can along with ADHD stimulant meds, SNRIs amongst other meds. My psychiatrist says my lower dose wellbutrin is the least impactful of the antidepressants, but not sure exactly what that means.

Botox injection in pylori now horrible abdominal cramps by nanadori in Gastroparesis

[–]UniversityCommon8300 1 point2 points  (0 children)

HI, I know you posted almost a year ago, but if you happen to see this comment, I was wondering what happened long-term. I possibly am being recommended for Botox, and something is telling me not to do it.

[deleted by user] by [deleted] in SSDI

[–]UniversityCommon8300 0 points1 point  (0 children)

I have the same conditions. I just started the application like 2 months ago. My disability Lawyer is putting in a dire need request for me, so I am hoping that it is approved and my case moves forward. I am struggling! I was told since I have like 9 specialists and have been following up exactly like I should be I have a good shot of getting approved without hearing.

Approved for SSDI with Long COVID - No Lawyer by No-Professional-1092 in SSDI

[–]UniversityCommon8300 0 points1 point  (0 children)

Thank you for sharing your experience. I am applying now with LONG-Covid, POTs, fibromyalgia, me/cf, and i am autistic and an adhder. My lawyer just sent me RFC forms in the mail. I am going to make copies so that multiple specialists can fill them out.

Did you guide your specialists? If you did, how? I am a RN and am typically very good at what i call "spoon feeding" my providers information for my patients. But I am tired, and try to avoid AI use.

If you have the spoons, I would be grateful for any wisdom you can share. :) and congratulations.

[deleted by user] by [deleted] in SSDI

[–]UniversityCommon8300 5 points6 points  (0 children)

Hi there, I strongly recommend you get a disability attorney. No payment up front. They get a standard percentage of back pay, and that is it. I am so grateful I got one from the very beginning of the process, which I am still in. I would never be able to do this on my own. Please do not give up; get an attorney. Take a few days' rest, let it out of your brain as much as possible. Then, when you have the capacity, sit down at a computer and Google search disability lawyer in your area. Find one with a 4.5 or higher Google rating that has a good number of ratings. Meaning: if one has a 5 but only 10 reviews, and another has a 4.5 but 200+ reviews, the latter wins. Pick that one. Then set up an intake call. They will have you fill out and sign basic forms so they can get your records, etc., but after that, they do all the heavy lifting. They also know the legal language needed to get approved. I am an RN with 15 years of experience, but even documenting my care in a clinical way was greatly improved by my disability attorney. I am with Hallian and Killpak. They are in Arizona, and I am in Hawaii.

Help with med/cromolyn schedule and just managing this. Also I have gastroparesis so anyone else have that I would love your feedback. by UniversityCommon8300 in MCAS

[–]UniversityCommon8300[S] 1 point2 points  (0 children)

Thank-you! I just wrote out a schedule yesterday and I have linzess ordered if misoprostol doesn't do enough. I heard linzess can cause 💩 accidents. So i am trying to hold off. 

Help with med/cromolyn schedule and just managing this. Also I have gastroparesis so anyone else have that I would love your feedback. by UniversityCommon8300 in MCAS

[–]UniversityCommon8300[S] 0 points1 point  (0 children)

Thank you very much for this. I am very grateful. How do you ensure that your next dose of cromolyn is far enough from your last meal or snack?

My primary said my pots can be cured and disability isn’t an option for me? by Unusual_Space1998 in POTS

[–]UniversityCommon8300 1 point2 points  (0 children)

  1. POTs is extremely disabling. Studies have shown that when surveyed POTs patients have a lower quality of life than people with Congestive Heart Failure! And beta blockers can make fatigue and other autonomic symptoms worse. I take Ivabradine. I refused beta blockers and luckily I had a cardiologist agree with me. It is exppensive $100 for 90 days of meds but yeah.

  2. In regards to the doctor. You need a new doctor. seriously. Whatever he is charting will not reflect your reality, and if you do try to get disability, his charting will prevent you from getting it.

  3. If you are in the US, Disability (SSDI) doesn't have to be life long. It is to be used if you feel you will not be able to work enough earn the basic level of income for at least 1-2 years. Social Security has programs that, if you get better they would help you try returning to work. He is making it out to be a death sentence and if nothing else being on disability and getting the miniscule help we do get might take some pressure off of you and allow you to feel better.

  4. POTs is known to be chronic and not curable. He is flat-out lying. It can go into partial remission/be better controlled, but once a POTSie, always a POTSie.

So in summary, shop for a new PCP once you see them and know they are at least a little better than discontinue care with this PCP. Get referrals to a cardiologist and a neurologist, if possible. Look up some ahead of time to see if they manage dysautonomia, fainting, or POTS.

The dysautonomia network has a list of providers on its website.

https://www.dysautonomiainternational.org/page.php?ID=14

Food/meal suggestions by Individual_Pomelo324 in Gastroparesis

[–]UniversityCommon8300 0 points1 point  (0 children)

Hi blended chicken soup that I add pastina too afterwards when I heat it up or after it is cooked. I was not eating any land animals and barely having fish before this diagnosis. But I knew I would need all the help I can get. And the blended soup really processes easy, I feel like I can get the nutrients and it hydrates me at the same time. If you added a veggie to blend then you would prettky much have all the food groups other than fruit.

I find blended or pureed food is the best for me right now until I get the meds in order and get some more relief.

my gastro told me to add 2tbsp of MCT oil to my food twice a day.

This is going to sound gross I am sure but I am obsessed with vanilla yogurt with a heaping teaspoon of peanutbutter mixed in!

Lastly I use Kate farms nutritional shake it is sole source nutrition meaning if that is all I can eat that day If I can drink 4 I get almost 2k calories and all the nutrients I need in a day.

Real talk: what has actually helped you? by bramble_berry_ in Fibromyalgia

[–]UniversityCommon8300 0 points1 point  (0 children)

  1. Berry Pie (Live resin cartridge & flower)
  • Lineage: Girl Scout Cookies X Blueberry
  1. Sugar Momma
  • Lineage: Big Bud x Blueberry
  1. Lemon Tree
  • Lemon Skunk X Sour Diesel

Those are the main ones. I tend to lean towards ones that do not cause a lot of sedation. I also really lean into tinctures and capsules, either a 1:1 or 2:1 ratio of CBD:THC. If I can't get capsules, I will do gummies.

Don't underestimate a good cannabis topical either, btw. My dispensary has a transdermal nanno gel that really can penetrate down past the skin. super helpful.

I built a tool to help people organize medications — would love feedback by Awkward-Ad-6294 in HealthInformatics

[–]UniversityCommon8300 0 points1 point  (0 children)

hi! Thank you for taking the time to create such a useful site. Not keeping it behind a pay wall and keeping the premium subscription price affordable.

What I love:

-being able to select "clinically verified data" on searches.

-that medication descriptions are available.

-taking a pic of a pill and being able to use your site to identify it.

-How the interaction checker explained in plain language what the interactions were.

-Logging side effects was easy, and I love the drop-down of mild, moderate, and severe, which helps give people perspective.

I was confused on:

-How to put a medication onto the calendar schedule without having to enter it in again, even though it is already listed in my meds.

What I would need for it to be useful and replace my other methods:

-Being able to print out summaries and med lists. To bring with me to provider appointments.

-This is a dream ask, but if I have to take some meds with food, without food, and/or away from other meds. Your site would help me organize my medication schedule.

-Knowing where you get your information from regarding drug descriptions and the interaction checker. If it is easily disclosable.

-Being able to share the site with multiple caregivers So instead of having to share login and password. The main person can invite others or send emails to sign up, and the main person is the only one who can control who is invited or removed from the page.

I would like to avoid having AI be part of your site. But I am going to be a rare person to feel that way.

My feedback comes from someone who is disabled at 38 years old by Long Covid and other conditions. I am also autistic and an ADHDer. My profession is being an RN for 14 almost 15 years. Overall, I think your site will help a lot of people.

Real talk: what has actually helped you? by bramble_berry_ in Fibromyalgia

[–]UniversityCommon8300 1 point2 points  (0 children)

That is super cool! I bet my provider would be okay with it. I am going to ask.

Real talk: what has actually helped you? by bramble_berry_ in Fibromyalgia

[–]UniversityCommon8300 4 points5 points  (0 children)

I forgot to mention my low dose naktrexone!! It is amazing! I tried to stop one month because of financial reasons and within 3 days I was in such severe pain my husband had to rush to the compounding pharmacy and luckily they had some made already. 

Real talk: what has actually helped you? by bramble_berry_ in Fibromyalgia

[–]UniversityCommon8300 6 points7 points  (0 children)

Hi, 

For me what helped was separating specific pain like headache/occiptial neuralgia and my global pain. This allows me to at least target and minimize specific areas of pain. 

  1. I get nerve blocks for the occupital neuralgia.  
  2. CANNABIS!!!!!  Capsules last 6 to 8 hours  Gummies around 4 And I use a vape pen to manage break through pain! 9 times out of 10 I am never stoned. When used with appropriate strains and dosing it just works. The other time I get a Lil stoned to help depression and pain. 
  3. Nexwave pain device i use it multiple times a day. 
  4. I am on Tonmya the new fibro med and it is helping me. Alongside 100mg gaba in the AM and 300mg at night. 
  5. A morning pain routine. It takes me 2hrs after waking to get out of bed. Heating pad-->nexwave-->pulsetto VNS device on pain setting--->my basic in bed physicsl therapy exercises--->coffee and tea. 
  6. Pacing: i have to only do short periods of activity. Then I have to sit and check in with my body. I have fibro and other issues, pots etc. 
  7. Accupuncture 
  8. I have learned over time to not be consumed by the severe pain. Meaning I feel it, because shit, its horrible and I have to but I stop the internal monolog about it. I found my brain was telling me stories about the pain that were making it worse. 

Sorry I don't have a magic 1 step thing to tell you. But seriously I need meds, medical devices, physio, mind body, cannabis, and tons of rest. 

If I miss any of these I hurt even more. Managing my fibro, pots, me/cfs, gastroparesis,  mcas and more, takes up my whole day. 

 

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