MomtoGiuliana

Do you have a specialist who is evaluating your symptoms? When I had severe POTS I had high heart rate even resting, and probably at times it was in the 90s-low 100s at rest. It would also tend to be higher after eating and also worse in the morning and better in the evening. The hallmark of POTS though is a change of at least 30 bpm from sitting or lying down to standing. My hr would go up to 160 just standing up. Obviously you would need some sort of test of orthostatics to determine if this is happening. There are of course other forms of dysautonomia and also there could be another cause for these symptoms. Hopefully a specialist can figure this out for you.

I take 1,000 mcg a day. When I was first supplementing I took 3,000 mcg a day. I just recently had a discussion about it w my endo. He said it's not possible to overdose B12. But I would talk to a dr about dosage for your daughter. I do not think it would be needed to both do shots and take sublingual.

I use Sublingual Liquid Drops - 5000 MCG Supplement with Methylcobalamin (Methyl B-12) by aSquared nutrition. As RecipeforDisaster mentions not everyone does well with cyanocobalamin. I got a lot better within a month of B12 supplementation (and stopping the shots). You're welcome and I hope she feels a lot better soon.

I was diagnosed with low B12 in 2018. My dr started giving me shots but for some reason I tolerated them badly. Every time I had a shot my POTS symptoms would worsen quickly within about a day to the point of barely being able to stand up. My dr claimed I was experiencing vasovagal reaction to the shot (not any of the ingredients just a reaction to receiving a shot). I guess that is plausible but I have never had that happen before. After about 4 shots which all resulted in this reaction my dr recommended trying sublingual drops instead. For me, this worked well to get my B-12 levels up and relieve some of the neurological symptoms I was experiencing. I know some people with low B-12 swear by the shots only (I found that a lot when I looked into B-12 support groups), but from what I have read elsewhere, taking B-12 orally resolves deficiency for most patients. The shots just do it faster and from what I understand are ideal if a patient is severely depleted and experiencing symptoms due to low B12. I have also read on support group sites that many patients feel worse from the first few shots. I don't know why this would be. And it is anecdotal of course.

I think they are saying the efficacy wanes after 10 weeks. Not that the benefit lasts 10 weeks. So it is still, from what I understand, providing benefit after 10 weeks. It apparently becomes more likely that a patient will have a symptomatic infection if exposed. I think the best thing to do is to talk to a dr about your specific concerns to get help weighing the risks and benefits, to the extent they are known.

Sorry he had this reaction. I agree about "panic attacks". When I was a lot younger and started having POTS I had these episodes that I can only describe as excess sudden adrenaline. I was told they were panic attacks. The strange thing was I wasn't feeling panicked! But so many drs told me what I was experiencing was a panic attack that I started to believe I had an underlying anxiety disorder. In any case, I have also had in the past vasovagal response to shots and having blood drawn. Which can feel a bit like a panic attack I believe. I wonder if that is what happened to your son possibly (the "panic attack). Although 5 hours seems like a long delay, I feel this has happened to me before with shots.

Welcome to the forum. That is frustrating that you have to wait so long for a TTT. I wonder if your specialist might consider just looking at your vitals lying, sitting and standing in the office. I know some people are diagnosed that way without a TTT. Obviously a TTT is the gold standard. But it might help with getting things moving with trying treatments that may help. Treatment can be trial and error even with a knowledgeable specialist. If you have not already seen it, this list mat be useful to review and discuss with your dr., if your dr does diagnose you with POTS. https://www.dinet.org/info/pots/pots-what-helps-r100/ You say you are feeling dehydrated. Does drinking more fluid help you to feel better?

I think it can also just depend on how well hydrated you are, time of day, if you've just eaten, and other factors. When I have flare ups I do not continuously have the dramatic change in heart rate that technically defines POTS. But I have disabling symptoms just the same. My doctor says it's "POTS".

Could she get a letter from her doctor? There are lots of discussions here on the forum regarding stairs, but I am not offhand aware of an article on this. Stairs, Good Or Bad For You? - Dysautonomia Discussion - Dysautonomia Information Network (DINET) I know when I am in flare up I can do OK with stairs if I take them very slowly. But I realize this is not very practical all the time.

There has been past discussion on this topic. Here is one https://www.dinet.org/forums/topic/13895-for-those-of-you-who-take-licorice-root

I had symptoms like this when I was diagnosed with low B12.

I had two very bad POTS relapses--one at age 49 and one at age 51--both lasted about two months and were very disabling. I was in perimenopause at the time. I suspect the hormonal changes/fluctuations played a role. But I was also diagnosed with low B12. I was also losing a lot of blood due to heavy periods. So I think there may have been several factors. Knock on wood I have not had another relapse--so far.

I'm sorry about your diagnosis. Good it was found. The only connection I can think of is EDS. Some forms of EDS can make you more susceptible to aneurysms, I believe. And EDS and POTS can go together.

So sorry. Good you went to ER to be checked out. My experience is that the symptoms you are describing could be a flare. Do you have a specialist you can follow up with? It sounds like you've had good testing to rule out serious causes. For me when I am in a flare my electrolytes go slightly off--slightly low potassium and magnesium--and this can result in more PVCs (it feels like extra beats or pausing). If I make sure to be drinking a lot of fluids I also make sure to be eating high potassium foods. I have also at times taken a magnesium supplement, but you have to be careful about that bc it can cause diarrhea which can make things worse. Good to talk to a dr before trying any supplements. I also get muscle and joint pain typically with a flare. It is very frustrating the range of symptoms we can get and in my experience each flare is a little different. I know it can feel scary. Take care and hope you feel better soon.

Here is discussion that may be of interest https://www.dinet.org/forums/topic/9412-light-sensitivity-and-dysautonomia https://www.dinet.org/forums/topic/730-light-sensitivity-and-dizziness

I'm sure doctors diagnose POTS or dysautonomia without a TTT. My sister was actually diagnosed without one. This was based on the fact that I had a diagnosis and also her symptoms. Orthostatics can certainly be measured without a TTT. At the same time, the TTT is the gold standard for diagnosing POTS. And there is a lot of information it can provide, albeit a snapshot. It would be generally used along with evaluation of other tests and symptoms, to determine a diagnosis and treatment plan (basically what I had said above).

In my experience, a POTS patient may not meet the orthostatic criteria for POTS daily or hourly. That doesn't mean they don't have POTS. My specialist has said this. He has said in the past that he diagnoses it not strictly on one tilt table test, necessarily, but additional information including symptoms and other tests to rule out other problems. Also "only" 117 bpm on standing seems likely a bit excessive. Everyone is different of course, but I doubt most people have a hr of 117 just bc they stand up.

I would talk to your doctor about your concern. But I agree this term is used frequently. I would assume no news is good news tho, until told otherwise.

Oh wow--that's good--I was hoping for that for me too. Unfortunately I am having symptoms after getting the booster yesterday morning. Not quite as bad as the 2nd Moderna, but I have a fever, headache, dizziness, lethargy. Also my arm is super sore. All of these symptoms popped up within hours of getting the shot.

So sorry you are having a flare up. Please take care.

This is an important point. Thank you for sharing your perspective and knowledge!

It is confusing. I think one problem is that there is not enough data yet and the immune system is complex and our knowledge of COVID is not good. One fact I am aware of is that there have been quite a few people who have been infected w COVID more than once--which does suggest that immunity weakens over time. This recent article may be helpful. https://www.medpagetoday.com/special-reports/exclusives/95156

You might find this recent talk valuable. He talks about hydration/dehydration.

@Pistol good question. A friend of mine my age but with no significant health issues was told by her doctor to have antibody testing before deciding on getting the booster. However, I read elsewhere that this does not provide information that is useful in making a decision about whether to get vaccinated or to get the booster. https://www.npr.org/sections/health-shots/2021/08/28/1031287076/antibody-tests-should-not-be-your-go-to-for-checking-covid-immunity "having detectable antibodies from a blood test "only means that your immune system mounted a successful response then and that you have immune memory." This does not translate into useful information in terms of how well protected you are, apparently. I am glad to hear that so many got the booster without significantly more severe side effects.

PS for anyone who did not see this and may be interested. As part of the recent series of videos that were released in October, we have one talk on the topic of COVID and dysautonomia. https://youtu.be/JI_c95dvg0w