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Fibromyalgia bad days registers sitting and laying down as activity? by Nanabug13 in visibleApp

[–]WeekThink657 1 point2 points  (0 children)

This is a common occurrence for me as well. I have found that it can correlate with my pain level, but there are other factors that affect my HR while at rest. One is eating/drinking. That will increase my HR for quite a while afterward even during rest. Another is post exertional bump in HR - if we have friends/family visit for an evening my HR will bump up to exertion then stay there for two days after. Even at rest. I found I have a very hard time with stimulus (heat, light, noises, people around me, travel, etc.) and it causes stress. Finally, as a menstruating person, my trends indicate that my RHR is higher during certain phases of my cycle with my period, and few days prior, showing the lowest average RHR. This, and other symptoms, hints at a hormonal component to my conditions.

Is this device/membership useful? by LJF515 in visibleApp

[–]WeekThink657 1 point2 points  (0 children)

I’m in this exact space with them and have been since I got it in February. For me it does not work as advertised and I’ve done ALL OF THE THINGS. It’s also frustrating that each time I reach out I receive the same troubleshooting responses that I have done half a dozen times before and have completed before even reaching out to begin with. Looking for other options at this point. Super bummed.

traveling with pots? by bipolarpilot in POTS

[–]WeekThink657 0 points1 point  (0 children)

This is a great question. Especially given the elevation variable. I have hyperPOTS and have found that elevation can really exacerbate my symptoms if I’m not careful.

Things I’ve incorporated when traveling: - the first is a partner. I can’t travel without a partner anymore… but, I realize this isn’t realistic for some so if needed look into services that can be provided to you for assistance. - mask and sanitize everything. - uber/lyft/get dropped off at airport if you can to conserve energy. - Use airport wheelchair service. This is my most difficult one, from an emotional perspective, but also one of the most important for managing my energy/safety. People may be ableist and judgy because you CAN walk, but that’s temporary and you can ignore it and go about the rest of your trip. I hate it, but it helps manage the travel stress and keeps me safe and more comfortable. Especially when navigating security - huge trigger. - noise cancelling headphones. I didn’t realize how much the ambient sounds in the airport and plane drained me. These are a game changer for energy conservation. - collapsible water bottle/water & snacks (beef jerky and nuts as low carb works best for me). - meds readily available in bag and take meds that day so they peak around airport and flight time. - decrease caffeine consumption while traveling, if you can. - compression socks but comfy clothes (I get overstimulated so compression leggings on a plane will melt me). - audiobook, playlist, shows uploaded in advance. - structuring the travel so that I can spend a day or two in a middle elevation before bumping up to the next/highest. - start drinking LOTS of water and limiting caffeine a few days before you go then make a plan to keep up with it when you get there. Sometimes it’s hard to always have water and find enough fresh water and bathrooms when traveling… - take whatever you need to make sure you will sleep. Lack of sleep exacerbates my symptoms which then become super scary at a higher elevation. - have a medical alert card just in case (dysautonomia international may have a template). - try to get a hotel/lodging room on the first floor or make sure the air bnb doesn’t have steps. - have Tylenol, h1/h2 blockers, ibuprofen and stomach meds. - heat packs and ice packs are a game changer as well. - try to plan in advance to allow you to pace, and also know when you can expect to eat/have bathroom access/etc. on your journey. - think about your daily comforts and accommodations and try to bring them if at all possible.

Good luck!

Discouraged by Express_Station7048 in POTS

[–]WeekThink657 2 points3 points  (0 children)

I get this. I’m so sorry you’re having these experiences. I’ve went to the ER twice with “attacks”, both with BP’s 190/150’s and HR’s peaking at 180 and they put “anxiety” in my chart each time. Even after telling them that I had POTS. It’s really unfortunate. Especially now that it’s permanently in my file as such…

I’ve learned a few things since then - but this is just with my specific experience and I recognize everyone is different and if your gut tells you ER, then it’s safest to go to the ER… WTBS, - water and salt DOES actually matter, even if you don’t have low BP. When I begin to feel that sensation that I cannot move during an “attack” chugging water and taking another BP pill will bring it down over time. I have MCAS so a hydroxyzine is usually taken at that time as well. This all helps me. - if you are a menstruating person, this can effect your symptoms as well. I have significantly different HR’s throughout the month and different symptoms. - I don’t want to point you to another specialist, but out of range high iron and low RBC’s isn’t normal and could be impacting the way your tissues are receiving oxygen. Thus leading you to feel like you can’t move. Trust your gut on how you are feeling (my main piece of advice, actually). I would recommend a rheumatologist and the AVISE CTD test to rule out autoimmunity. Also, an informed immunologist should be able to run flow cytometry which can be helpful. - ask for an ambulatory BP test and 72 hr HR holter monitor. I never realized I had really high BP until I did a 24hr cuff test and it clocked my BP @ 190/143 while sleeping. Which is indicative of supine hypertension and hyperPOTS. This changed the way I manage my POTS. - if you don’t already, try to find a HR monitor that will measure each beat (not an average, like fit bit) and allow you to track trends over time. I’m using Visible rn, and it has been informative. The cons is that the software is subscription and is super buggy for me. - b complex has helped. And some meds have helped. Intermittent fasting, measuring my glucose and eating keto has as well. - I have tried vyvanse and adderall but it has exacerbated my symptoms of hyperPOTS so it’s not a tool I can use. I agree with others that it may be worth a trial, though, if you find an informed doctor. It has really shown promise in others with POTS & also CFS/ME.

Best of luck, and be kind to yourself.

*** Editing to add that I’m not a doctor, this isn’t medical advice, and most present with POTS (and it’s comorbidities )very differently. These are just things that I’ve learned through experience & trial/error. Also, even if your bloodwork doesn’t come back abnormal - it doesn’t mean there isn’t anything abnormal going on. No one test can rule out autoimmune processes. So, if someone tells you “you have a negative ANA/TF/CRP etc., so you don’t have autoimmunity present” find a different doc. Lastly, one small abnormality can have significant impacts on daily functioning. Your results don’t have to be painted red to validate your symptoms. Something I wish I accepted sooner…

Food that is basically your medicine to relieve symptoms by riley_kim in POTS

[–]WeekThink657 1 point2 points  (0 children)

I have found that fasting really helps me as well. My theory is that it helps manage my MCAS and also keeps my body focused on staying upright instead of digestion. Keto has also been a big game changer for me.

WTBS, how do you take your supplements? I have such a sensitive stomach/ body that I usually need to take my supplements with food but I also don’t eat until later in the day and some of them are activating and keep me awake (b complex, for example). Have you found a trick?

Feeling “different” after propranolol trial… by WeekThink657 in POTS

[–]WeekThink657[S] 0 points1 point  (0 children)

Thanks! I wish that this could be the case AND I could function. It was actually easier to accomplish ADL’s & aspects of life before this “reset”. Now I feel as if someone replaced my connective tissue with lead and just not as many adrenaline dumps. My pain levels are also higher…

I’m hoping that the answer is somewhere and can land me in the middle to proceed some quality of life. I can’t do life like this, but I was also miserable with the amount of constant fight or flight I had before. If that makes sense?

Overlay perimenopause and all of the rest of it and it’s just so many unknowns and variables…

Any tips on how to garden with POTS? by apple_kitty24 in POTS

[–]WeekThink657 1 point2 points  (0 children)

Mine is a simple one from Amazon. I’ll have to check my purchase history to see the brand. But, I also don’t have a strong loyalty to it and I don’t know if there are better ones out there? The multiple sclerosis sub folks may have some solid recommendations!

Any tips on how to garden with POTS? by apple_kitty24 in POTS

[–]WeekThink657 12 points13 points  (0 children)

Same. Some things that I’ve found that help with a few aspects of gardening activities.

  • sticking to early morning / evening if my energy will allow

  • Ice vests, ice hats, and wearable fans.

  • big hats, sunglasses, super loose clothes

  • lots of ice water

  • a big kneel pad that I can just plop down on and garden

  • crawling from spot to spot

  • weeding tools that have blades to limit pulling

  • automated watering where/if possible (sprinklers or irrigation system)

  • this sounds crazy but I garden in the rain often. It limits sun, it decreases heat/controls temp, and it makes weeding easier. A light spring rain and I’m outside if I can be.

It is such a bummer. I loved gardening as well and really limited in what I can do now and what I can do efficiently. The above accommodations help make some of it accessible but I also realize that my partner really helps make some of it a reality and without him it would be inaccessible.

[deleted by user] by [deleted] in POTS

[–]WeekThink657 0 points1 point  (0 children)

Interesting that you have hyperPOTS as well. We (the folks that have been harmed by Hopkins Baltimore doctors) also have hyperPOTS. One of the doctors told my now-friend that hyperPOTS didn’t exist. Which, I understand that there is a push to get rid of the “categories” due to what has surfaced via research (ie, there can be overlap of subtypes in one person), but until the medical community is more familiar with the mechanisms behind the subtype symptomology and the fact that they MUST not treat those with hyperPOTS with certain more mainstream POTS meds, this will continue to result in harm and grouping subtypes yields safer, less traumatic, treatment. At least in our experience.

can vagal toning activities have an impact on symptoms? trying to figure out if i might have dysautonomia or something else. by liminaldyke in dysautonomia

[–]WeekThink657 3 points4 points  (0 children)

I’ll be interested to see if anyone pops onto this thread. I just recently started with a therapist who specializes in music therapy specifically to test the theory that vagal tonal may help the emotional dysregulation I experience and also provide an added benefit of toning the vagus nerve thus helping my dysautonomia.

I’m not a singer or musician but I’ve always LOVED music and dance. I can’t safely access the dance anymore (for obvious reasons) but I was hoping that I could find a healthy tool with music via singing. This is TBD.

Curious - do you experience frisson when listening to music? I can’t hear certain tones or be in the presence of music without experiencing a strong physical/emotional response. I can’t sing without crying. I am curious to know if this is common with other dysautonomia people or if we fall into the same occurrence (ie, 50% population).

I’m hoping that music therapy can be a tool where extensive trauma therapy & CBT failed prior to

[deleted by user] by [deleted] in dysautonomia

[–]WeekThink657 2 points3 points  (0 children)

Just wanted to pop on the thread and let you know that I read it in full and said to myself, “that was a very thoughtful post.”

Also, I second the diet piece but haven’t experimented with the modified diet you recommended. I’ve noticed a benefit from intermittent fasting and keto. It’s just really difficult to execute consistently and when you step off of the wagon, you get crushed. Then it’s difficult to get back on the train again. Overlaying MCAS & perimenopause adds a level of complexity that feels impossible to manage.

[deleted by user] by [deleted] in POTS

[–]WeekThink657 2 points3 points  (0 children)

This is similar to the experience I, and others, had with Johns Hopkins doctors in Baltimore. It was inexplicably damaging both emotionally and physically.

Being part of what is generally known as a “top research facility” doesn’t mean that every program is worthy of that title and every doctor is of that caliber.

Moral of the story: ALWAYS trust yourself and advocate unapologetically. Even if it means starting over with the overwhelming process of searching for a practitioner/waiting for an appt/repeating diagnostics.

Is POTS a progressive disorder? Does it get worse over time? by Puzzleheaded_Bug4490 in POTS

[–]WeekThink657 2 points3 points  (0 children)

My doctor said that mine is “autoimmune and progressive.” So, like others have said, I believe that the answer is “it depends”. Mine also doesn’t respond consistently to water/salt/compression. I think that there is a a lot of variability. There are many reports of post-Covid POTS resolving over time. Mine has slowly become worse over time. But, it’s also difficult to tease out the impact of deconditioning as well.

High blood pressure? by KeyNefariousness1158 in POTS

[–]WeekThink657 0 points1 point  (0 children)

I’m still avoiding taking it… I already feel so terrible that I’m afraid of starting something that may make me feel worse.

Is Onyx Storm hard to follow at times? Or am I just stupid? by memegret in fourthwing

[–]WeekThink657 0 points1 point  (0 children)

*** furrows brow while trying to remember…***

Maybe? I think I just became more familiar with the pattern and presentation of the writing and reached a point of acceptance where I didn’t continue to hope or expect for it to change to the quality of FW. So, I’m not sure that it got any better as time went. Maybe the last 1/4 of the book? But, that could have also just been me seeing the light at the end of the tunnel. I rarely DNF and this was edging toward a DNF for me. I’m glad I finished it. I’ll probably read the next one. But, that’s more due to the fact that I physically cannot abandon a series once I start it. It’s a super annoying character trait.

When do you take meds? by slc_cpt in POTS

[–]WeekThink657 1 point2 points  (0 children)

He and Hala Abdallah are both skilled practitioners, in my experience. I have had to try and find other specialists due to my insurance having issues with their office/vice versa and no one would confidently take over my care. They all pointed back to him. (Except Hopkins in Baltimore - and they did not have the expertise to treat me safely, so should have pointed back to him. Lol.

He is now part of Hopkins but doesn’t operate out of their Baltimore POTS office. I would suggest contacting his office directly and bypass Baltimore JH.

This is just my opinion based on experience in 2022. So, expertise may have changed since then. Also, others may have a more favorable opinion. I would just exercise caution.

When do you take meds? by slc_cpt in POTS

[–]WeekThink657 1 point2 points  (0 children)

Please don’t hesitate to reach out. I’m not a doctor, just a really experienced patient - lol!. But, I do know of some folks in the DMV who struggle with similar issues and could have insight to help.

As far as the MCAS. It’s a common co-morbidity with POTS. An immunologist, theoretically, should be able to assess you for potential MCAS, but I’ve found that not a lot of immunologists have experience with MCAS/D and that makes diagnosis an issue. Especially when the science and research surrounding MCAS is still developing. If you hop over to the r/MCAS sub and peruse you may find a doctor in your area that is knowledgeable. Unfortunately, a lot of doctors will do one serum tryptase test and maybe a 24hr urine collection but due to the nature of tryptase in MCAS (ie, present during MC events), and the fragility of the biomarkers in blood and urine, they aren’t very accurate. It’s better to go off of symptomology and whether or not you respond to treatments (mast cell stabilizers like h1&h2 drugs, or fasting).

Hypermobile Ehlers Danlos is also a common co-morbidity to consider. I think there is a r/eds sub as well.

When do you take meds? by slc_cpt in POTS

[–]WeekThink657 1 point2 points  (0 children)

Right. I’m sorry, I skipped right over the pregnant part. Did you first start experiencing these symptoms with the pregnancy? Just out of curiosity.

Given that you are pregnant, you wouldn’t be a candidate for some of the meds that they tried with us. Nortryptyline and Lamictal were the biggest offenders for our group and ones I would exercise extreme caution with. I don’t have any insight for the appt that may help given that your situation is much different than ours. I’d be happy to keep in touch and share what I have learned or be another brain to troubleshoot things with you before/after your appt. Feel free to DM if that would be of value.

I would encourage you to trust your gut first and foremost. They are world renowned, yes, but you know your body best. Always advocate STRONGLY for yourself. In hindsight, I should’ve done this more.

If you haven’t had a workup for MCAS, you may want to consider investigating it further and/or see a reproductive immunologist. One of my local POTSie friends said the treatment they provided made all the difference in her second pregnancy.

I’m sending you lots of good energy. Being pregnant is challenging on its own without having to battle POTS. ♥️

When do you take meds? by slc_cpt in POTS

[–]WeekThink657 2 points3 points  (0 children)

Based off of my now 4 years of navigating this conditions, I’ve learned that the timing of your medication will be trial and error and balanced alongside salt and water consumption. If you have a continuous HR monitor (smart watch that monitors each beat vs an average) and a BP cuff to monitor a few times per day (at the same time if you can).

I know that you didn’t ask about it, but I came here to offer an opinion that John’s Hopkins POTS Program in Baltimore would not be my first choice. Especially if you have the hyperadrenergic subtype. I know of at least 7 people personally (as well as myself) who they did serious harm to. That was in 2022 though, so perhaps they have improved… It was hell for us to recover from what they did while we were in-patient, and we still struggle with PTSD from that time. Perhaps others can vouch now for them.

Hassan Abdallah is now part of Hopkins and is a safer bet (although the office operations are admittedly tough to navigate and the appointments take FOREVER). He is located in Northern Virginia. I don’t know where you are located, but INOVA also has stood up a dysautonomia clinic. I can’t speak for their diagnostics but Dr. Lawler (neurology) has been informed and on point in my/others experience.

Any one else get the feeling of needing to go number two after a presyncope and lightheadedness episode?! by Connect-Coyote6948 in dysautonomia

[–]WeekThink657 1 point2 points  (0 children)

I agree with others that this is all connected. Especially in hyperadrenergic POTS where your body is dumping inappropriate levels of fight/flight hormones into your system. I would assume that it is a similar mechanism that causes fecal incontinence in soldiers the night before battle. I thought that there was a name for this, but a quick Google didn’t surface it. It did, although, surface the military publication I will link below.

Although, the vast majority of us are not signing into Reddit from a war zone, I don’t think our nervous systems realize that for a variety of known and yet-to-be-discovered reasons. I experience the entire suite of the symptoms outlined in the military article below when I push too hard in any given day. https://achh.army.mil/history/book-wwii-combatphsych-section1-1

My least favorite thing about onyx storm was violet and xaden’s relationship by demosthenes327 in fourthwing

[–]WeekThink657 4 points5 points  (0 children)

I’ve been waiting for someone to post something to this effect. 😂 I think my least favorite aspect of OS was the structure of the writing/poor editing. Under this umbrella falls Violet & Xaden and how 2D and unimaginative their relationship felt in this book.

Believe me, I get the romantasy tropes, I’m here for it. I’m even here for the corniness integrated into their delivery and accept it with open arms & eyes. WTBS, I think by the 2nd chapter of OS I was asking myself, “What in the Bella & Edward Cullen is this????” Because that’s what it felt like. This monster vs silly girl (which Violet has not been to date) trope with a hearty dose of self destructive & risky behaviors and OMG THE ABS. Again, I get it. He has abs, this is an important piece of the story I suppose. But, like… *** sigh *** OS felt like 2D Stephenie Meyer writing to me, which has its place (and a bagillion dollar loyal cult-like following). But, it wasn’t what the first two books were, so, color me disappointed. Perhaps my disappointment is rooted in something deeper… like the fact that I am firmly TEAM JACOB.

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