“Day 10 of the patches. Going to do the full 28.
Still doing VERY WELL with the disabling POTS/dysautonomia/cardiac symptoms! She can walk up the stairs without being on the verge of passing out, lightheaded, dizzy, etc.
The digestive issues are still there, with the same small improvement from the first post, but whether she realizes it or not, she IS able to eat more, which is huge for her petite frame (103#, 5’7″ & growing taller by the day).
Her digestive issues for the past several years have been S-L-O-W digestion… very slow, feeling very full for HOURS after eating, WAKES UP feeling full after sleeping all night, etc. We have addressed the gut, ruled out reflux, etc. We have worked with so many providers from the traditional medical model, as well as the alternative one. The gut one is the one that is the biggest challenge at the moment, with the POTS issues under control.
We have added IVY back in after reading it can help things along. Last year she FINALLY improved after ivy (though still had the digestive complaints, she could eat more, which was HUGE for surgery prep & recovery to be able to take in the protein needed for healing), so we decided to use it again.
She has taken the salt capsules here & there (some days not at all), so we know most of the improvements (if not all) are from the 7mg patches. Ivy is only day 3.
We believe the tinnitus she has been having has been from LC/POTS/dysautonomia. Since the patches, she has only had a shorter spell of tinnitus once (about 5-10 minutes), after standing up from a shower chair. She said previously the tinnitus would happen when the cardiac/POTS/dysautonomia symptoms were really bad, so it was more episodic… she would have the tinnitus off & on at least a few times per day.
We have HUGE PROGRESS!!!! Sorry for the long post, but SO MUCH to share!!
We started the patches & within an hour they made my teen sick (dizzy, nauseous, pulsing headache, etc), but we used the TENS clips & took a nux vomica tablet, & things calmed down. I was nervous & about to take it off, but she insisted she keep trying it. The next morning she felt some improvement. The side effects were just the pulsing feeling in her head with the 2nd patch (no pain, but pulsing) & are now gone.
We are on patch 5 & we are looking at a new person!!
FULL DISCLOSURE, she also started taking salt capsules day 4 (took 6 of them total, 2 caps 3x, but had used the patch for 3 days at that point prior to starting the capsules), which have helped as well, but she felt SO good that she FORGOT to take any salt caps the next day & still felt AMAZING with just the patch!!
Initially we were going to hold off on the salt capsules until this weekend to see what JUST the patches would do, but she woke up with a cold the one day & was SO miserable that I told her just to start them because I felt the cold was hindering progress, and was worried it would cause her to lose the progress.
Today she woke up late & BOUNCED out of bed, got ready, & was out the door for an appointment… she LOOKS AMAZING… you can just SEE it in her face how much better she feels!!
She has a new life ahead of her!!
This is a kiddo whom has been SUFFERING from POTS/ dysautonomia SO badly that she could often NOT get out of bed for at least 1-2 hours after waking up. Sometimes she had to lie in bed all day long. There were many hours/days where she would have to go BACK to bed to lie down because her cardiac symptoms were so bad (palpitations, dizziness, heart rate bouncing all over the place, headache, etc). We had upped her salt, elevated the head of the bed, B complex, & other natural remedies that had caused some improvement, but nothing helped enough.
She has had many issues since 2018 that were labeled as psych by some doctors in various hospitals… in spite of our ped & every other provider we have seen for routine wellness (chiro, ped, etc) plus every new provider (eye specialists, cardiologists, neurologists, etc) we have taken her to DESPERATE for help, has said there is NOTHING psych going on.
She has had every MISdiagnoses you can imagine. Things that made ZERO sense! She had a gastric scan because she has symptoms of DELAYED emptying… even after 4 HOURS her stomach was NOT empty to the % that is “normal” & somehow the results said “possible RAPID gastric emptying”.
I honestly think they mixed up her results with a man who came for the same scan while we were waiting for the next image to be taken of her stomach, because he was in & out in 30 minutes. He had 2 images. They were the only two there in the whole department during her scan.
Anyway, the hospitals all missed EDS, Lyme, etc in 2018…. in spite of her having EVERY SYMPTOM of them BOTH, minus a bullseye rash… but she did have other rashes. We only found out in 2022 about them.
Due to the EDS & Lyme, there has been crazy joint pain, in addition to multiple dislocations & subluxations all day long, which obviously cause pain also. We started LDN which helped the joint pain TREMENDOUSLY.
Last October, in spite of LDN, the pain has been much worse. Every weather/temperature fluctuation has brought even more pain. We were actually going to try going up on LDN, but since starting the patches her joint pain has gone WAY back down again. One night she forgot the LDN & had not taken any salt capsules, yet when she woke up the next morning her joint pain was minimal!
I read some comments here about LC causing pain, but it never crossed my mind THAT was what was causing her pain flares again. Pain with EDS to the extent it impacts her petite body is very common. I had no idea it was LC that kicked it all back up for all of this time.
As of day 5, she has had vision static, which she said is now very minimal. It has also almost completely eliminated tinnitus, which she had off & on for the past 2-3 years. POTS/dysautonomia symptoms are SO minimal (palpitations, heart rate spikes, etc). Parosmia (was gone after using the TENS) & is still gone. Headaches are very infrequent now. She walks up the stairs withOUT getting dizzy, doesn’t have to stop half way up to rest, etc.
I know there are many other things that have improved that I am just not thinking of right now. Oh, another HUGE problem that has PLAGUED her since 2018 has been digestive issues (it is actually what CAUSED her to go into the hospitals)… VERY slow digestion, feeling full after a few bites of food, etc. Even THAT has improved a bit.
In 2018 she had 3 failed NG tubes that kept coiling up… which they said SHE made the tubes coil… even though she was anesthetized when one of them was placed… then a g tube was surgically placed. After that g tube, nothing was ever the same. A pain syndrome started. Digestion was absolute CRAP, even worse than when we went into the hospitals.
For her to have any digestive improvement is HUGE!
We have seen countless providers (well over 100!!) since 2018 seeking help & answers about her digestion, & everything else plaguing her. We made some digestion progress last fall, but then after anesthesia & narcotics for a hip surgery, her digestion was very poor again. She has another hip surgery next month, so we will see how digestion is after that.
As of now, we are doing the patch daily, TENS daily (though she missed the last 2 days because she felt so good, she didn’t want to sit still.. we were doing it 1 -2x per day prior to now), salt capsules (she has taken 6 capsules for 1 day & then took 2 today), & LDN 4.5mg.
We eat a mostly clean diet due to allergies, Lyme, etc. (gluten free, minimal sugar, soy, dairy, etc) & have eaten that way for 15 years, so there have been no dietary changes recently.
We have a college student who might try the patches over spring break. She has been dealing with LC for over 18 months (parosmia & anosmia are HUGE issues for her). If she tries them, I will update.
If you are in the fence about trying the patch, TRY IT!! I was SO nervous with her being a teen, but she reminded me she had nothing to lose & everything to gain. We have the full blessing of her functional neurologist, chiros, etc. with whom I shared the links about the study with. We are so excited to see neuro & PT to share how well she is doing!!
TY Dr Groysman MD Robert for what you are doing for people & families!! Your work is CHANGING & SAVING LIVES!!