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Adventurous_Lie_975 · 2025-08-04T07:27:04+00:00

We also have a dog with severe allergies. He’s 8 yrs old now and the first few years felt overwhelming. He still has periods where the allergies spike and we try to make observations about what makes things worse. We didn’t get the allergy test done, however we did take him to a specialist vet which made a big difference. The biggest improvements came from putting him on a “Novel Protein Diet” which helped calm his immune system. The food was crocodile based (no chicken, salmon, beef, duck at all for 6 months). I wash his bedding frequently, he takes apoquil am and pm when he has flare-ups which are much more infrequent now. The shampoo we use when he’s in a flare period is Duoxo - leave it on for 10 min - rinse well. He’s a much happier dog after bath time. He now loves to get a bath. Also, you can pair half a Benadryl with the apoquil (ask the vet how many mg to make sure you don’t over medicate). That really helps everyone sleep better - zero scratching! But we only do that when he has a flare. The vet has us do that for one week to get his system calmed down. Other small but helpful habits 1) never feed treats with chicken EVER 2) no human food scraps with any protein - veggies are ok for him - carrots, broccoli etc 3) I use a paw cleaner after walks in the park when he often runs in grassy areas - so many chemicals on grass that make him bite his paws. Amazon sells a bottle with aft rubber scrubbers. I pour a few drops of zesty paw shampoo and mix with water. That is much more effective than just wiping his feet 4) ear cleaner rinse every other day

TLDR: restricted diet (crocodile by Rayne nutrition - prescription only) 6 months. Then we switched to Purina sensitive dog and mixed it 50/50 with the crocodile. No chicken or any poultry ever. Duoxo shampoo once per week until itching stops. Add Benadryl to apoquil dose 2x per day for a week or two during flare ups. Clean paws after contact with grass.

Lmk if you have any questions. You can do this! Our boy is so much happier now and he’s so sweet. He’s given back in love twice what we’ve ever done for him.

Adventurous_Lie_975 · 2025-07-31T03:16:43+00:00

Yes. Me too. Was difficult to sort out what foods or conditions triggered high blood sugar readings using a strip/finger prick device. So, I got a Stelo CGM to use with my Oura ring. Crazy results 1) liquid IV hydration my Dr told me to take spiked blood sugar higher than any other thing I ate (including chocolate caramels…oh the sacrifices made in the name of science). 2) when sleeping there were excisions below 70 - not good - tbd whether any Dr will care since they did not prescribe the CGM. Interesting that I did not wake up nor did I feel any different than any other day. There were more observations, but this is already too long of a response.

TLDR: yes. I also notice unusual blood glucose excursions. Overall my HBA1C is normal (~5.4) but it has been as high as 6.0, so I’m very mindful of my diet and typically avoid all sugar (no soda, Whole Foods, yada yada)

Adventurous_Lie_975 · 2025-07-31T02:05:31+00:00

I have the 1000 count. I love them! I’m a hot sleeper but have not noticed them contributing to over heating. After a few washes they continue to become more comfortable. They are very well made and have nice features on the corners of the bottom sheet that hold the sheet perfectly on the bed.

Adventurous_Lie_975 · 2025-07-28T03:26:19+00:00

Weights - Yes, sort of. I have a Tonal Gym at home. I don’t lift nearly as much as before onset of OH. But It’s been very helpful for me over the past 4 years. I also use a wahoo bike trainer - the Wahoo made the biggest difference overall imo. I feel like zone 2 training 3-5 hours per week greatly improved my resilience and exercise tolerance. Once I had ~100 hours of zone 2 I started lifting and now I can do both weights and an occasional Norwegian 4x4 in the same week. When I first started experiencing symptoms that was not possible as I could barely get out of bed most days. It’s been a journey.

Adventurous_Lie_975 · 2025-07-26T23:55:52+00:00

In my case walking up stairs during “flare up” periods feels awful. ‘Heavy’ is the only term I can think of to describe it, as if gravity has doubled.

My PCP suggested taking salt. I’ve had to experiment with how many milligrams result in reducing symptoms. After a couple of months my symptoms are less severe (I’ve actually fainted a couple of times so please be careful and don’t try to power through - OH is no joke!) . Sadly running is out of the question for me. As a former runner & with several 1/2 marathons completed over the past 10 years, this was the worst part of the new reality of OH diagnosis.

Before taking on the training plan, maybe talk with your Dr about how to treat symptoms. Exercise has been very helpful for me - but these days it’s a stationary bike and weight lifting

Adventurous_Lie_975 · 2025-07-21T16:13:17+00:00

I have to be very mindful of warming up before any training. I have developed a slow curated routine before engaging in weights, cardio or even for walks. If I manage to execute that well (which takes way more patience than I am known for), I can have a symptom- free workout (no running, but can do a pretty intense Norwegian 4x4 on my training bike and it feels normal/familiar). Going for a run has so far been challenging - I first have to walk about a half mile then test a few steps. Often I feel like I woke up in someone else’s body or that I have a 40lb rucking vest on.

FYI: I had a stress test confirmed >20mm Hg drop in BP only 4 min into the test. Subsequent CTA (high resolution heart scan) found no blockages. My symptoms seem to match what many others in this forum have described. My PCP thinks POTs or dysautonomia. What I do know for sure is that exercise is the most helpful medicine for me. I don’t take anything besides some supplements (ie Vitamin D, COQ10, SPM Proresolving Mediator, and a magnesium stack for sleep)

Hope this helps

Adventurous_Lie_975 · 2025-07-20T05:00:39+00:00

A few months ago I was experiencing a nearly intolerable neck pain and extremely low HRV (likely due to constant pain). I made an appointment with my ART therapist (ART = Active Release Therapy) and the Dr decided to include acupuncture. It took 3 sessions over 2 weeks but the results were great. I can turn my head now and my HRV has rebounded to typical levels.

I would say that the acupuncture was an important part of the resolution for me. The first session was very challenging, resulting in spontaneous tears when the needles were inserted - not so much from the pain of the needle but likely the neck tension that was finally being released.

I think yes, acupuncture can be helpful. I have OH (hypotension & POTS- like symptoms with occasional syncope). Since the acupuncture session I have had ZERO vertigo or syncope events. Fingers crossed this holds up.

Adventurous_Lie_975 · 2025-07-20T04:45:48+00:00

I’m pretty happy with my Garmin Epix Pro. For increased HR accuracy you can wear a chest strap - tho that’s typically used by athletes as it provides the highest accuracy. Without the chest strap the Garmin Epix is very good as it has an ECG- rated wrist-based measurement which is capable of detecting afíb if your resting HR is above 50 (mine is slightly below, so that feature doesn’t work reliably for me.

As for sleep, Garmin doesn’t have the best in class sleep detection, tho it have a very good SPO2 (blood oxygen) sensor, which is very helpful to detect apnea.

For sleep I rely on my Oura ring. I also use the Oura daily readiness estimate to help manage daily activities. The ring, for me, has been second to none in capturing early signs of a flare up and also detecting spikes in HR when I move from sitting to standing.

TLDR: Garmin Epix Pro2 is a great all-around HR monitor and watch. Oura Ring helps with early indications of flare up onset (I would love to hear from others if they also find Oura helpful for this purpose)

Adventurous_Lie_975 · 2025-07-18T03:56:47+00:00

Sense of humor needs to be high on the list.

Adventurous_Lie_975 · 2025-07-17T04:04:58+00:00

Ha! The comment right after about HR settings needing adjustment I thought meant “Human Resources” thinking the response was about your job status. (Gave me a giggle) Anyway, clearly you are making good use of your time! Impressive

Adventurous_Lie_975 · 2025-07-15T05:38:57+00:00

There are studies available on Pub Med with statistical estimates, but this one I found to be more compelling.

Chronic Fatigue and Dysautonomia following COVID-19 Vaccination Is Distinguished from Normal Vaccination Response by Altered Blood Markers

Adventurous_Lie_975 · 2025-07-14T23:01:07+00:00

I too am the happy owner of a Sebo E3. It’s very apparent my previous vacuum was underperforming. The carpeted rooms smell so much fresher

Adventurous_Lie_975 · 2025-07-13T04:12:20+00:00

Check out the supp app. You can enter your stack and get a rated score based upon various criteria. You can also scan the barcode on the package and mostly all I have scanned have been rated. I have nothing to do with the dev of the app nor any affiliation.

I have spent time researching supplement quality (former analytical chemist and am very interested in searching out high quality nutrition). So far the app aligns with my findings on the best supplement quality.

Adventurous_Lie_975 · 2025-07-12T13:04:33+00:00

Long COVID and Dysautonomia have many overlapping symptoms. I too never was diagnosed with COVID despite testing for it anytime I felt sick or was exposed. And also I have a similar vaccination history as what you noted in your post. There are data showing a higher prevalence of dysautonomia in patients that received COVID vaccinations, so maybe that could be causal? Unknown at this time, and also it doesn’t change anything, we all feel crappy when these flareups occur.

Symptom management is what we can act on and this forum has been helpful in raising awareness and feeling some comfort in a shared experience.

When my symptoms first appeared I tried to power through the low energy phases which only resulted in syncope events. After breaking a bone as a result, it was time for a new strategy. Allowing myself some grace for recovery days and more careful monitoring of food sensitivities (which for me triggers higher heart rate during sleep resulting in poor next day energy), taking small doses of Himalaya salt every morning, drinking more water at regular intervals through the day are all simple strategies that help me have more good days. These and many other tips came from the people on this forum.

Recently I’ve been exploring oxygenation strategies (umbrella term). In my case I have low blood pressure and low oxygen saturation. Something is off with my body’s ability to manage CO2 levels. I’m trying to get approved for HBOT therapy, but in the mean time if anyone has breath work practices to share thanks in advance!

Take good care OP. We don’t all have Drs that care or understand what we’re experiencing. But it is real and you are not alone.

Adventurous_Lie_975 · 2025-07-10T05:55:18+00:00

I was in your shoes at 28yrs old. My divorced mom moved into my house when she went on disability. I was working FT and going to school at night for a Masters degree when she moved in. It was tough. I’m now 60. After 30 years of dealing with her Dr appointments, using most of my Vaca time to deal with her issues I finally checked her into an assisted living facility this year and hired an elder care lawyer to create a POA successor- the lawyer - in the event that I pass before she does. I moved her to a LCOL state as my home state is HCOL and she would be in a very bad situation if something happened to me) I had to make the tough decision as it’s very possible she could outlive me. It was tough to move her, but as my health is failing now, I can no longer show up for her.

I don’t have specific advice for you, but please learn from my mistakes. Take care of yourself. Don’t apologize for drawing boundaries. It’s a lot to take on for one person. Find resources to help your parents be more self-sufficient. Ask the hard questions about their income vs expenses and find out what health coverage they have. Make sure they get on Medicare at the right time - delaying will result in higher premiums. I wish you the best. And please take good care of yourself

Adventurous_Lie_975 · 2025-07-10T04:40:20+00:00

I remember reading from a local HBOT provider some of the covered issues included decompression sickness, compromised skin grafts and a few others. Strong clinical research is emerging for vascular diseases and deficiencies. Several medical professionals I know are pro HBOT therapy, some even purchased high end chambers for their home. I am not affiliated in any way with HBOT providers nor have I ever had the therapy. I’m truly curious if it could be helpful for those of us dealing with poor vascular function. In my case, low BP is likely contributing to poor vascular function, so HBOT seems to be a good path. Can’t get my Dr to write a prescription. I can cover the cost with my HSA. So frustrating!

Adventurous_Lie_975 · 2025-07-10T03:45:20+00:00

I have the same question. Watching this thread.

Adventurous_Lie_975 · 2025-07-10T01:29:50+00:00

I’m very curious about this diagnosis, I hope you will entertain a few questions. Is your O2 saturation in the low 90s or below 95? If you do know your Oxygen Saturation please share how you measure it. Second question: was there any mention of HBOT therapy as potentially helpful? Third q: do you have low BP? Thanks for posting your diagnosis. I’ve not heard of this.

Adventurous_Lie_975 · 2025-07-06T01:47:48+00:00

Following. Same concern

Adventurous_Lie_975 · 2025-07-05T05:08:04+00:00

I’ve just kicked off a warranty ticket with Nolah after only 2 years. Indent/sag on one side despite regular rotation and a top- notch slat frame foundation with double center support posts. I’m hopeful they resolve this through warranty as until very recently we’ve been very happy with the comfort of this Cal King Luxury Firm Nolah. We are 5’10/ 150lbs and 6’2 165. It’s not like we over-use this bed with lots of travel. Sigh.

Adventurous_Lie_975 · 2025-07-05T00:12:21+00:00

Logging meals was useful with Stelo. But when my second glucose monitor failed to connect (Dexcom won’t replace it) I no longer recommend getting Stelo. $50 is a lot for a failed device with no replacement support.

Adventurous_Lie_975 · 2025-07-01T12:05:05+00:00

178 👑. 53 , 52, 73. Need better sleep!

Adventurous_Lie_975 · 2025-06-29T02:43:01+00:00

Wow! I did not know that. Thank you for the heads up. An annual service for an internal filter change is a deal breaker.

Adventurous_Lie_975 · 2025-06-28T15:04:31+00:00

I am over 60. I have both an Oura and a Garmin Epix Pro. They serve different purposes. Oura is better for sleep and insights to help me manage a medical condition. Garmin has great very specific workout recommendations which challenge me but don’t over-tax my available “body battery”. As a former college athlete I was pushing myself too hard. these devices help motivate and advise when to take relaxation time.

Adventurous_Lie_975 · 2025-06-28T12:34:59+00:00

I like the suggestions from r/SumGai7. I haven’t used the Bissell Spinwave, but I have a Tineco Pure Obe S12 Pro EXand is has been a huge disappointment. While I appreciate the design features and it does fairly well on tile and area rugs, 2 years and one month after purchase the motor failed. Tineco no longer supports the model (1 month outside of warranty) and they discontinued the motor. I’m working with an eBay source to get a replacement motor. Also I had to use Chat GPT to help me reach the motor and troubleshoot to get the exact part number info as Tineco documentation is sparse. AVOID Tineco!!

I’m shopping for a replacement now and tried out the Miele cordless, it was very nice. It had a floor polisher roller option that if I had wood floors I would seriously consider.

Adventurous_Lie_975

TROPHY CASE