MomtoGiuliana

So glad you were able to advocate for yourself and that this dr heard you. 

Hope you get better very quickly. 

Let us know how you are doing.

People with EDS can have gum, teeth and jaw issues.

Here is a past topic that may be helpful

https://www.dinet.org/forums/topic/19733-teeth

I had no increased POTS symptoms after Moderna, including the booster.  I did have arm pain, particularly after the first shot.  After the second I was bedridden with severe fatigue, fever of 101 and muscle and joint aches for about a day.  My reaction was less significant to the booster (temp not as elevated, not as severely fatigued), but I still wasn't up to going to work that day.

I think it probably isn't unexpected to have increased POTS symptoms with a fever etc .

22 hours ago, MikeO said:

 Not sure what keeps being quoted as a high heart rate (is that non-beta blocked?). my cardiologists keep telling me the beta-blockers will keep my max hr in check. so far they are on que. 

I was prescribed a low dose beta blocker that did knock my hr down.  The "high hr" I mentioned was pre-diagnosis.

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.

5 hours ago, DizzyGirls said:

Someone on an EDS group, however, recommended the sublingual kind.  You can get it from Amazon!  Sometimes people with Dysautonomia just react differently than the norm.  I really strongly felt that it was an autonomic reaction she was having. My daughter has a lot of neurological with it, too.  Something just needs to be done quickly to get her appetite up.  Subject of a feeding tube came up today.  Thank you so much for sharing your experience!

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.

53 minutes ago, MTRJ75 said:

If the benefits are only going to last 10 weeks and, like the last shot, my nervous system is lit on fire for about half that time where I won't be able to leave the house anyway??

 

 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.

On 12/19/2021 at 2:13 AM, Mom said:

Mom replying.  My son (POTS resolved to OH in 2018) got his Pfizer booster today.  Earlier doses caused extreme fatigue and recovery was two weeks. The Pfizer booster caused him a “panic attack” five hours after the jab was given.  Classic symptoms that resolved in 40 min.  He’s hoping that will be it.  The adrenaline rush will cause insomnia probably for a few days.  But then, his sleep pattern has been dysregulated —staying i upp but resting most of the night. Bed I think panic attacks should be renamed.  The term has too many psychological implications for people with dysautonomia who want to be helped. Is there anyone who’s had a similar experience with the booster? Thanks. 

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).

11 hours ago, Bailee said:

 

However for the tilt table test my heart rate only reached 117. Which is weird because when I stood and did a poor mans tilt table test two weeks ago at the neuromuscular doctor my heart rate went to 142 and my blood pressure increased. 

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.

21 hours ago, yogini said:

By way of an update, unlike the first two shots I didn’t have any symptoms from the Moderna booster.  

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.

9 minutes ago, toomanyproblems said:

a reasonable idea might be to look for sources that are drawing from a significant consensus of those involved in the current scientific understanding on the topic

This is an important point.

Thank you for sharing your perspective and knowledge!