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@Ashc - I zoom and facetime with my family and friends that I cannot visit. My teenage daughter is - of course! - on all types of social media and she plays mine craft with her class mates and stays on facetime with her BFF all day. Only teenage girls can endure that! She also has taught herself how to play the Ukulele online - she is really good at tit and practices every day. I am an avid gardener and herbs are my passion. We have vegetable gardens, flower beds and I baby my herb garden. I don't know if you have a garden space but if not you can easily tend to herbs inside on a window sill or on a porch. I do all three! I have a big 16 year old Rosemary plant, as big as a bush, and I bring it in every winter. Rosemary is great to plant cuttings from! I also LOVE Lavender and have 2 plants that I bring in every winter. Unfortunately it is too cold here to keep them outside in the winter. I also have Oregano, Sage and Thyme, which all survive the winters, and plant annual herbs like parsley and basil etc each summer. Whether you want a kitchen garden or a medicinal garden - herbs are easy to grow, are beautiful to look at and fill the house with their scent! I take cuttings and dry them and keep jars of them in my spice rack. -- As in medicinal herbs - I plant lemon balm and mint for teas and have grown horehound, lemon verbena, chamomile, ecchinacea, and many others over the years. I make salves and tinctures from them. My favorite is made from marigold and Yarrow and coconut oil and beeswax - it makes a great salve for cuts, scrapes, insect bites etc. Oh - and I have an aloe plant for burns ... Well - have I peaked your interest? I could go on and on, obviously you have triggered my passion!!! If you decide to start an herb garden and need any tips or tricks feel free to PM me!!!!!

@dancer65 - thanks for that exercise tip! I tried it right away and it really helps!!!! 😘

@Derek1987 - although I am sorry you had to spend that much time in the ER it is a relief to hear that you don't have a blood clot. The trip definitely was not a waste b/c the first thing to make sure you don;t have is a clot. Once that is ruled out everyone can take a breather and the emergency is over. Hope the PCP has any ideas. Good luck! ( Oh - and btw - maybe you should just CHOOSE to get better? Funny none of those highly trained docs have ever suggested that 😉! )

@CallieAndToby22 - as you know I too take autonomic seizures that appear exactly like a grand mal seizure. Sometimes they have caused me to stop breathing for a short while. Once I had one while getting a. EGD and the anesthesiologist said she had to move my jaw to open the airway, the seizure caused the neck to hyperextend and cut off air supply. Keeping you safe is always the most important thing so it's best to have someone with you at all times to intervene if a seizure causes problems until they figure out what helps. For me it's POTS medication and weekly + IV fluids that have almost stopped the seizures.

Very interesting @Rexie ! I have IC with all the fixings, including pain. My urologist said that since bladder instillation did not help there is nothing more to try. I will definitely look that product up! @CallieAndToby22 - have you ever tried bladder training? That can help with the spasms.

@Cmama - you mentioned he already sees a gI but I wanted to tell you that my FIL gets horrible spasms from acid reflux. When triggered ( like if he drinks something acidic that stimulates his acid production ) he starts gagging and coughing. His EGD shows GERD and his allergist told him it's from reflux, so did his GI.

@Hippopotsamus - I think this is a common occurrence in dysautonomia. I get it, usually accompanied by yawning ( as an attempt by the body to get more O2 ) and can lead to syncope or seizures for me. I was told it is due t the ANS making too much adrenaline which constricts the vessels which then causes tremors etc. , at least that seems the case for me. I control this by laying down, covering up with heating pad ( warm blankets in hospital ) and - hopefully - it goes away. Overdoing things or getting too stimulated can cause this.

In my case my doc gave me al letter to take to ER stating my diagnosis and that IV fluids will stop it in an emergency. Often that woul dbe enough to get at least a liter of IV fluids to hold me over, but still there were docs that refused. One said he did not believe in POTS and another said if I can drink I don;t need IV fluids. Needless to say - I ended up admitted later that day due to autonomic seizures that went away with - SURPRISE! - the IV fluids that were denied to me in ER.

@Slim Im - I get POTS flares whenever I have allergies or even insect bites. I also do not well with immunizations. I was told this is due to histamine release, which is a vasodilator and therefore can wreak havoc in our unstable ANS.

PLEASE go to get it checked - it COULD be a blood clot. I am not aware that Florinef would cause swelling in just one leg.

@POTSius - thanks so much for sharing that this helped you! I hope it continues to work!!!!! 😊

@merkat30 - for me IV Fluids bring my BP down when it is high from HPOTS b/c they help relax the blood vessels.

@toomanyproblems - I recently started a post on autoinflammation & POTS, in which I mentioned the new findings in current research about the inert immune system causing POTS by way of autoinflammation ( vs autoimmune ). I think the fact that so many COVID patients develop post-viral POTS goes along with those findings.

I have never heard of it either but just looked it up. Sorry - I get what the test is but have no words of wisdom. I always am for checking into things, though, since it may pinpoint what causes her problems.

Which test are you referring to?

Hello @Ashc - I do not really have depression from COVID but had it due to becoming disabled from POTS years ago. I did talk to a friend who is a counselor back then, as well as my doctor. Between a few talks and going on SSRI as well as improving my diet and going outside every day ( when possible due to weather ) I improved considerably. Feeling shut in ( or out ), being bored, feeling hopeless and experiencing inactivity from the restrictions can cause to feelings of depression, and that is normal. In these times I have found social media a lifesaver ( especially facetime and zoom ). For me being confined to the house is nothing new, due to limitations from POTS, and I have found that finding new hobbies has helped me a lot. Also volunteering in different ways can help, we can contact different Nonprofits or church orgs to offer to help. Forums always appreciate input, and some places may appreciate help such as calling older or sick people that are alone over the holidays etc. You can also check with the local senior center etc.

@Mslucimills - welcome to the forum! I was on Bystolic once and it did not help my high BP. It did not even help for the tachycardia that much ( neither did Metoprolol ). Carvelidol ( nonselective beta blocker ) and Diltiazem ( calcium channel blocker ) helped me much, much more. But we are all different. Generally speaking - medication effectiveness is highly individual in POTS, so no ONE type of med works for all of us, even if we have the same symptoms. My docs and my autonomic specialist usually either up the dose ( if possible ) or switch to another medication if one does not seem to help.

WHAAATT? 😵 I am shocked! Elavil is a potent med, and I cannot imagine putting a 6 year old on that!!!! --- One thing to keep in mind - people with dysautonomia are generally very sensitive to medication, so my specialist told me to always go the very possible lowest dose at first, even if that means to go by pediatric dose or breaking the lowest dose in half. Many of my meds were introduced that way and if I tolerated them they were increased slowly, in small increments. That way if I did not tolerate it the negative effects were not so bad, and also that way we could see what dose was enough ( for me usually a much lower dose that recommended for my age and weight ). So please keep that in mind when any doctor wants to introduce a new med.

Hey @MTRJ75 - seizures come in different types and forms, so anything is possible. I take autonomic seizures and they are not like what you describe but rather that I loose consciousness and my body stiffens and back arches for up to 2 minutes ( usually 30 seconds or so ). I am not sure that seizures become progressively worse like you describe - but I am no expert!

Hello @Cmama - welcome to the forum! I am so sorry that you son has all these scary issues. I am wondering if he might have allergies causing these spasms. Has he ever been evaluated by an allergist? Histamine release can trigger POTS symptoms since it is a vasodilator. Also - has he been evaluated for sleep apnea? You mention the emergencies always happen at night. A sleep study might shed some light on the issue. As far as I know POTS does not commonly cause the type of respiratory symptoms you describe, so it may be unrelated or - as I mentioned - it COULD be that it is due to allergies or immune issues that can cause POTS. What tests will Mayo be doing?

@Hippopotsamus - you know, I was just thinking .. in 20 years medicine may have changed to the point that dysautonomia is a common diagnosis, and treatments may be available by then ( certainly hope so ). In literature they mention that dysautonomia has been around forever, but the docs never knew what it was and were baffled by the symptoms. I read that in the recent past it was always brushed off as anxiety, hypochondria or hysteria. And before that they had different names for it but no treatment, they used to put the people ( mostly women ) on bedrest and there they would stay indefinitely. How sad! I wonder if that is what happens to all the females in classic novels that had a mysterious illness and did not come out of the room or had to move to the sea for a better climate. Well - makes me almost relieved to have it in this day and age ...

Hello again, @LisaMarie - be aware that Ativan ( Lorazepam ) is a highly addictive and controlled substance, I doubt a doctor would consider it at her young age. You are so welcome 😉. Feel free to PM me anytime , I am glad to help if I can.

Hello @LisaMarie - welcome to this forum! --- I am very surprised that your daughter was diagnosed with dysautonomia that early, but am not surprised to see her get worse in her teens. I have HPOTS and also have ADD, had it since childhood. Due to the symptoms of dysautonomia I was referred to a neuropsychologist twice, and she diagnosed me with ADD. I never knew I had it until my adult years and it turns out that all of my 4 siblings have it too, as well as POTS for my 2 sisters. Depending on your insurance you may want to ask for a referral to a neuropsychologist b/c they can help her deal with the ADD. --- I have been on Lexapro for the POTS but my autonomic specialists prefers Wellbutrin. I had allergic reaction to it, so had to stop, but I know that can be very helpful and many POTS patients take it. I also am on a low dose of Ritalin which helps with energy and concentration, although it is very short lived. You would think the Ritalin would worsen the insomnia ( since it is a stimulant ) but it has helped me with my sleep. In HPOTS ( hyperadrenergic POTS ) the insomnia is caused by increased adrenaline levels, which are supposed to drop during the night to allow REM sleep. Having the added energy and being able to exercise a bit helps me with sleep. I am VERY surprised the doctor ordered clonidine for sleep, especially in someone as young as your daughter. It is a powerful drug and - although it helps some POTS patients - can wreak havoc in our already unstable systems. I could not tolerate it at all and had to stop it after just a few days. I also have a prescription for Ativan, which I take sometimes when I am too wound up to sleep. It is very important to have a sleep routine, meaning going to bed roughly at the same time each night, not using electronics or doing exercises for at least one hour before bedtime, avoiding heavy food before bedtime or drinking too much in the evening. Getting daily outdoor time is also important. I hope the new cardiologist will be sensitive to her needs and is educated about POTS. Has she ever had a TTT? Often once the POTS is under control the insomnia improves as well. The usual treatment includes increased salt and water intake, compression hose and a careful balance of rest and exercise. One of the biggest challenges in POTS for me is having to constantly listen to my body, to stop when I need to and then to get up and be active when I can. I know this is difficult for a teenage but it is very important in order to stay on top of POTS. Pushing through or powering through the symptoms will make it much worse. Good Luck with the new doctor. Please let us know how things are going. Best Wishes!

@cmep37 - I frequently pop my ribs out too! I had this happen to one particular rib for years before finally my chiropractor found what it was. Between her and a friend who is a RPT they showed me a maneuver ( mostly stretching and twisting ) that pops the rib back in. I often can do this at night, when I am relaxed. It works, but it does not help to prevent the rib from popping back out. With me it is a rib that was broken once and healed crooked so that it now is too short, therefore it easily pops out. I also found some useful videos on youtube that show PT's doing a stretch that pops it back in.

@scmnewlgpt I do not have mast cell issues but do have NCS and HPOTS. I was prescribed Escitalopram ( SSRI ) years ago for POTS and it has really helped. I have no bad effects from it. It really has improved the adrenaline surges and also has made me simply feel better. I also was - in addition - on Bupropion ( SNRI ) and felt good on it as well but had to stop it after a month because It gave me acne ( very rare side effect BTW ). SSRI's and SNRI's in POTS is just like with any other med: we are highly sensitive to any meds and what works is highly individual. My autonomic specialist uses Escitalopram and Bupropion the most b/c it seems to work and more patients tolerate it. So since you did not tolerate Paxil Wellbutrin ( Bupropion ) may be a good one to try. Good Luck!