POTSius

I wanted to share that I have had great improvement with two longstanding and debilitating chest pain symptoms via self massage!

the symptoms were:
1. a bad pain in the center of my chest
2. a fluttering sort of sensation in my chest

I massage the muscles between the ribs (which I did not even know existed! they are used for breathing) and also right at the junction of the ribs and the sternum (center of chest). I massage these areas only for maybe 30 seconds at a time, but like a dozen times a day. I hypothesize the key here is repetition.

I search for sore regions and massage them. After a week or two the soreness usually goes away (the pain/fluttering improved even sooner).

Interestingly, I used to think the first pain was heart palpitations. It sort of felt like that. I guess the lesson is it can be hard to distinguish where pain is coming from.

I think the fluttering must have been muscle spasms? And massaging the muscles somehow helped with that?

If anyone has any questions, I am happy to answer and hope this helps somebody. I can't imagine I am the only person where the above helps.

I have no expertise with massage so if you try this please be careful, not sure what sorts of risks are involved here. But it has been too helpful to not share.
 

Edit:

For the technique, I use the middle part of my thumb, right at the joint and do small circles with light to medium pressure

I have hyperadrenergic POTS and feel strong emotion in general can trigger similar symptoms

Watching a tense sports game, playing cards, tense or suspenseful books/tv

I attribute it to an excessive sympathetic nervous system response

All of these things should lead to some sort of response in a normal person, people like us just get an excessive response

Clonidine/beta blockers seem to help for me

In short, I think it is not a separate disease, just part of some peoples hyperadrenergic POTS (or other dysautonomia)

@RecipeForDisaster

Are you sure the slow/deep breathing you do is helping?

also:

"It doesn’t sound as legitimate as I’d like, you know? I know it’s real, but man, I don’t think it sounds that serious to the average person."

I think many on this board can relate, with POTS as well

Maybe you can just say you have a form of dysautonomia and you don't want to talk about it.

I have read that deep breathing can lead to hyperventilation as well.

It is a misconception that hyperventilation is only fast breathing.

You can also hyperventilate by breathing too deeply

@CallieAndToby22

Sometimes you can call and ask them to put you on a "cancellation list."

They would call you if someone else suddenly cancelled and you could take their spot

I think people with dysautonomia cancel all the time due to their fluctuating health, so I think there is reason to hope!

1 hour ago, HCD77 said:

I discontinued meds before test , but I drank my usual salted water , electrolyte drink, and had on low cut compression socks 15-20 mmhg. I keep thinking maybe that effected it. Also I was only standing for 10 minutes because of Covid the tech said. 

I think you should retest without those things.

Those definitely seem like things that could falsely make you seem better than you were

If you were at 27 before, does not seem crazy that you would be 30+ without those aids

Maybe you have another type of dysautonomia?

I read about something called OCHOS recently

Don't know where besides the hospital below you can get tested for this though

"Orthostatic Cerebral Hypoperfusion Syndrome (OCHOS) is a syndrome of orthostatic intolerance associated with low CBFv that Novak first described in 2016. In this syndrome, the orthostatic cerebral blood flow is reduced while all other variables are normal. OCHOS can be disabling. Many patients respond to volume expansion or cerebral vasodilators, but the optimal therapy has yet to be found."

"We can now diagnose people who were previously thought to have psychiatric illness or had no diagnosis at all,” said Novak, of Brigham and Women’s Hospital Department of Neurology, one of only a few departments in the US  that has a Division of Autonomic Neurology."

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/

Same article talks about something called Hypocapnic cerebral hypoperfusion, which also doesn't have tachycardia (he describes it as POTS without the T)

Very interesting, I do the same thing about making sure I get up, for me every 30 minutes or so

When I have to do a long drive, we drive to an exit and I still get up and move around a bit.

I think sitting intolerance can be even more frustrating as it is harder for other people to understand vs being fully upright

Patients with severe CFS and orthostatic intolerance have 25% reduction in cerebral blood flow just during sitting, compared to 1.2% in health controls

Here is the study
https://www.mdpi.com/2227-9032/8/4/394

I thought this was interesting to share as there are often questions on these boards of whether just sitting can trigger orthostatic intolerance

Keep in mind the people studied here had severe CFS and the chair used in testing was a bit of a special chair but I still think it is interesting

2 hours ago, p8d said:

Be aware of the known side effect of hypertensive rebound with clonidine. It worked great for about 6-8 hours for me but when it wore off, especially overnight my BP soared into crisis territory. They do make a 24 hour patch that should help if you can get the dose sorted out.

I can share from my own experience that with the pill I had symptoms as I came off it every night but that with the patch the positive effects of the drug are much more stable.

I probably would not have continued with clonidine if not for the patch.

I should note, however, that even the patch is not perfect. I notice that over the course of wearing a given patch its effect tends to weaken day by day.

Because of this, I change it more frequently (as discussed with dr) than the recommended 1 patch per week

I also have MCAS and benadryl (US version, diphenhydramine) is super helpful for me when I have sleep issues

Be careful though, I think in the UK the drug labelled "benadryl" is a different actual drug, not sure if that would help or not (adding this in case you or anyone reading this lives in the UK)

I get a lot of body aches and have found self massage very helpful

I massage for less than a minute maybe a dozen or so times a day, with gentle/firm circular motions. After doing this a week or two, the pains typically greatly improve and need far less massage in the future.

I also think NSAIDs help

I am not sure if it is from my POTS, or MCAS or something else

22 hours ago, merkat30 said:

Unfortunately it a capsule I am taking so we just trying till 3 weeks see if helps is the plan for now 

If you get a medicine scale, you can actually split those up in some cases (it can be a bit frustrating though). You have to empty out the contents and then take, say, half and stick it in a new capsule. Be careful though: as the weight of the contents of the capsule will be more than the weight of the medicine, due to the addition of fillers. For example a pill with 10mg of medicine may have contents that weigh 50mg or something (picked those numbers arbitrarily but I think you get the idea).

But I think this only works for some medicines? I am not sure

I think it depends on the medicine being evenly mixed with the filler

I would ask dr or pharmacist if that may be an option for this particular medicine

I have done this for some medicines and it has worked well for me so far

19 hours ago, KiminOrlando said:

My allergist prescribed this for my random rashes, but now my bp has dropped and I'm having trouble walking again. Anyone tried this? I thought it was an antihistamine, but turns out it is for anxiety. The theory is that my sympathic nervous system has just been overstimulated and is randomly creating rashes. I think this med is the cause of my bp problems. But I can sleep at night and that buzzing/vibrating feeling is gone. 

It appears that it is both an antidepressant and an antihistamine

see this article

https://www.medscape.com/answers/762917-36233/what-is-the-role-of-doxepin-in-the-treatment-of-urticaria-hives

Have you tried more typical antihistamines? Do they work on your rash?

Maybe you can take a lower dose? Maybe you will adjust to the blood pressure effects too

I took 1mg for about 5 days

your reaction sounds a bit concerning, have you asked your dr about stopping?

Maybe you can ask your dr about taking only 0.25mg at first and see if you do better on that? (if the pill is splittable in such a way)

Sometimes it takes time to adjust to a medicine

That said, I also have MCAS and when I tried ketotifen I got bad fatigue so I stopped it

From what I understand, with MCAS you just got to keep trying different things so don't give up! Different things work for different people

I get that is hard right now due to COVID and hope you can find a dr soon who can help manage this process for you

5 minutes ago, PotSdealer said:

 

 

Jumping in here folks. Are you saying this low does of ritalin actually lowers your bp and HR readings? I have found the same with a low dose of caffeine throughout the day but it seems as if this is counterintuitive to hyper forms of OI/pots. 

 

@potsius I did not notice my symptoms until I withdrew off of a low dose of ritalin, and high amounts of caffeine. Doctors are perplexed as these usually "speed you up" but I was flatline low when I was taking 5-10mg of ritalin in the am, 5-10 mg mid-day. Haven't tried it since, too afraid. 

 

Thanks for the info, but I am a bit confused

Are you saying that your POTS symptoms only started after you stopped the caffeine and ritalin? How long had you been on both of these?

Is it possible you already had POTS and these two things were helping you so that you did not notice it?

Thanks for the helpful answers

@Sushi @RecipeForDisaster (and anyone else with experience coming off these drugs)

Did you notice any sort of withdrawal issues coming off the meds when you had to stop them?

I have read many accounts on this forum of positive results with stimulants like methylphenidate, in terms of helping things like fatigue and brainfog.

But I haven't really seen many reports that say that it has particularly helped their orthostatic intolerance, including things like presyncope.

If you are taking stimulants, do you feel it helps your orthostatic intolerance as well as fatigue/brainfrog?

I get very cold hands/feet/ears

I do not think I have Raynaud's though as my cold extremities are not episodic, but pretty much constant every day for most of the day. (From what I have read, Raynaud's is episodic in nature)

The one thing that really helped with this for me was prazosin. This makes sense as prazosin is an alpha blocker and alpha adrenergic constriction is a fairly plausible explanation for how hyperadrenergic POTS could lead to cold extremities.

but it worsened my fatigue and GI issues so I stopped it

Hope this helps

What treatment (medicine, lifestyle, etc) which helps you do you think is the most underrated? A treatment which, despite its good effects, you see little discussion of on these boards, etc.

For me, I would say ibuprofen, baking soda (for acid reflux) and self massage for muscle pains

The latter seems to work best when done maybe a dozen times on the target muscle per day, even if only for less than a minute each session

Please share what has helped you so others can benefit!
 

https://www.windy.com/-Pressure-pressure

I like this one, you can get a good view of the week ahead too

I too wondered whether I was affected by barometric pressure

After observing for a bit, it seemed to have a negligible effect on how I feel

It seems some POTS patients get this

See this article

https://www.heartrhythmjournal.com/article/S1547-5271(10)01204-X/fulltext

a select quote from it:

"POTS patients trended to lower PRA levels than did controls (0.9 ± 0.1 ng/mL/h vs 1.6 ± 0.5 ng/mL/h, P = .268) and lower aldosterone levels (4.6 ± 0.8 pg/mL vs 10.0 ± 3.0 pg/mL, P = .111)"

PRA = plasma renin activity

I think this is specifically for a certain subset of POTS patients?

I recall recent research looking into the renin aldosterone abnormalities in POTS  as being an autoimmune thing

Are you sure your doctors even know what MCAS is? It is a relatively newly recognized illness, it is possible they were out of medical school before it was taught (I am not sure if it is taught even now)

They may have heard MCAS and thought, shes probably thinking about mastocytosis or something else

From what I know of MCAS, it can present quite differently in different people so like POTS there is not one picture of what MCAS looks like

Also, due to the vague nature of the symptoms (and the sheer number of possible symptoms MCAS can cause) it is difficult to diagnose, you would really need to see an expert

I would recommend doing this though as treating my MCAS has helped me enormously  (but your issues could also be due to something else entirely)

Hope this helps

I had really bad headaches that felt like they were on the sides of my head for years

I have almost completely gotten rid of them through massaging the sides of my head

It may not help you, but could be worth a try

First try to massage and see if you can find any sore spots. If you do, I have found that massaging those spots multiple times a day for a few days in a row helps (It takes a few days for it to work for me)

see this topic for more details,