POTS Flare Feeling Really Stuck - Any Advice?

[issie]

https://www.healthrising.org/blog/2020/05/27/neuroinflammatory-paradigm-chronic-fatigue-me-cfs/

Dejurgen,  who I research with, is starting to unfold some of our ideas.  They are in this blog under comments.  You guys may find it interesting.  

[Chuske]

20 hours ago, issie said:

Sadly with both of these things we have relapses.  Emotional upsets, getting over tired, too hot, diet mess ups.....all can contribute.  I wish we knew exactly why we are all so sensitive.   But fact is, we are!  (There has been reference to us as being the canaries in humanity.  We sense and sound the alerts, very fast.) Pacing and paying attention to your body is very important when we are talking about ME.  Trying to not get over stimulated by things.  Even sounds play a part.  

HANG IN THERE!

@issie thanks so much for your support. I'll take a look at health rising

[Pistol]

20 hours ago, issie said:

Trying to not get over stimulated by things.

@issie - while reading over the article you posted ( thanks ) I realized that so many symptoms of ME/CFS are the same in POTS! What exactly, in your opinion, is the biggest difference between the two? Is it that ME/CFS has less cardio-vascular involvement? 

[Chuske]

@Pistol Sorry to jump in on your question to isse. I've had just ME and later ME and POTS.  The main differences are postural and cardiac. When had just ME I had no postural symptoms at all and very few cardiac ones but lots of physical and mental fatigue.

With POTS I started getting spells of fast heart rate when overdoing things and then as it got worse the postural  effects.

My original ME was after a bad case of flu the POTS started after tetanus jab and antibiotics plus lots of stress.

My original recovery occured for my ME by focusing a lot on brain retraining to calm reactivity and pacing. This might fit in with the neuro-imflammation idea in that if you can calm the brain enough it can "reset"? 

There is a lot of overlap in the conditions but I'd say the exercise intolerance is worse in ME than someone with just POTS. 

 

[Pistol]

Thank you, @Chuske. That makes sense. Hmmmm - makes me wonder. My family has a 3 generation of HPOTS history, yet my one sister has all of the symptoms minus the tachycardia ( very hypertensive, however ). She also had a lot of added symptoms that we Others do not have, like paresthesias, blurred vision, slurred speech at times … since she does not have the tachycardia upon standing she has currently a diagnosis of autonomic neuropathy ( all Others fir the description of HPOTS ). 

Could that be ME?CFS? She has extreme fatigue and cognitive issues/memory problems, high BP, adrenaline surges … however she does not have the orthostatic and exercise intolerance as we others do. She can walk and ride a bike and exercise on a rowing machine but she cannot concentrate and gets easily overstimulated to the degree that she has to go to bed. 

What do you think - is that like what you experience? 

[Chuske]

@PistolDoesn't sound like my ME except the brainfog and fatigue. Thing is there is a lot of variation between different people so I can't say it isn't, just that it sounds some of the added symptoms sound quite rare even for CFS plus high BP is not usual in ME as far as know.

[issie]

@Pistol, it actually could be for your sister.  Like POTS, ME/CFS can present different for different people.

You may enjoy the latest post on Healthrising as Dejurgen is starting to slowly unfold some of what we have been researching and experimenting with.  I listed the link.  

[issie]

Dysautonomia is in my family too.  My sister has OI and vagal nerve related syncope.  Her sons have POTS, one with MCAS and his twin has POTS.  Her daughter POTS and EDS.  My maternal grandmother had POTS and EDS.  My mom had severe MCAS.  So there are genetic components.   My sister and I was in a family study for CFS in Utah with famous ME/CFS doctors.  They found a lot of our genetic mutations.  But, my mitrochondria complex, all 5 of them, were not working properly.  Usually with only one Complex off, a person is in a wheelchair.  I still function.  I have symptoms similar to your sister.  And that can be mitrochondria related.  My sister is more Functional physically than me, but has more fatigue.  Which doesn't really make sense with my mitrochondria being so wonky.  But I'm more strong willed and push through a lot.  

[issie]

I have higher blood pressure with my HyperPOTS,  not easy to faint, but have.  (Can get seated first, have enough warning.)  Have really high NE with standing and the fast tachycardia heart rates.  And have neuropathy pretty bad.

Oh, one of my sisters sons also has Sojourns and my mom did too.  My dad also got Gillian Barre from a vaccine.  (Consider that with vaccines.  Though usually gotten from a flu or pneumonia shot.  They told my sister we should not have them as it could give it to us too. And I have Hypogammaglobulinemia and should be on IVIG.  But decided against it.)

[issie]

Dejurgen added more to his comments this morning on that link.  

[Chuske]

Has anyone had spells of POTS suddenly improving in terms of heart rates? Last few days when I was very fatigued from poor sleep oddly my POTS was improved. I had standing pulse rates in 70s for first time in years. 

Seemed almost like I had just bad ME and not ME and POTS.

Not sure what has changed.  I'm suspecting my stomach issues are a factor in my POTS ie when I have more bloating the POTS is worse.  Also I've been hydrating even more than usual.  

Today I'm a lot more energetic after better sleep but POTS and stomach both worse. Odd.

 

[issie]

Every day brings its own adventures.  It's up and down.  Better days and not so good days.  Pay attention, see what your body is trying to tell you.  Notice what seems to help and what doesn't.  And the gut plays a huge part.  Notice foods and see if that plays into the picture.  A good part of the immune system is in the gut.  Be thankful for those better days!!!!!

[Chuske]

On 6/2/2020 at 6:30 PM, issie said:

Every day brings its own adventures.  It's up and down.  Better days and not so good days.  Pay attention, see what your body is trying to tell you.  Notice what seems to help and what doesn't.  And the gut plays a huge part.  Notice foods and see if that plays into the picture.  A good part of the immune system is in the gut.  Be thankful for those better days!!!!!

You are so right @issie Every day is different. Finding my POTS symptoms are very variable right now. Digestive symptoms seemed under control then last night they were back even with the steps that normally deal with them. Very much find my digestive symptoms cause palpitations in me, so managing them is key.

Thanks for that link to the health rising article on neuro-imflammation. Very interesting and great so many drug and supplement candidates to test, just a shame not much funding around to test them.

Hope the upcoming larger Watanabe study helps push things along. What did strike me is that as the issue is inflammation in the stress centres of the brain that might explain why a few people get a bit better after doing yoga, meditation and brain retraining. I guess will depend on how much the inflammation is calmed by a calmer ANS.

[issie]

@Chuske I'm glad you enjoyed it.  We are adding more on another blog topic of recent.  Here is the link

https://www.healthrising.org/blog/2020/06/05/fight-flight-neuroinflammation-fibromyalgia-chronic-fatigue-syndrome/

We are starting to find many connections and "purple bandaids".  

Hang IN There!

[Pistol]

@issie - thanks for the artile on neuroinflammation from fight-or-flight. I have HPOTS and suffer from unexplained generalized joint pains. This started shortly after the beginning of my dysautonomia started and I have been told that it must be due to HPOTS. I never understood this and subsequently went through complete rheumatology work-up ( al AI labs negative for many years ) - nothing was found abnormal. 

The study explains a possible reason for the joint pains and answers a lot of questions about a possible connection between my diagnosis of POTS and the symptom of joint pain in my case. Unfortunately they do not have a treatment yet, so I am stuck with NSAIDS or steroids. 

Thanks again for sharing!!!!!

[issie]

@Pistol I too have a lot of pain.  Part is due to FMS and EDS.  But still not all can be explained by those two labels.  

Dejurgen and I have more to share and will be slowly sharing on the blogs.  We hope to get it all in one place soon.  There is more you can do!  And less destructive too.  

You may look up both of our comments, as we are already sharing some in other threads, on the forum part of Healthrising.   

We will share there, as we are not monitored and can put our thoughts freely there and our hypothesis. 

Issie

[Chuske]

I've had another setback. Hyper feeling all night and feeling hot (but temp on thermometer only 36c) not sweaty but normal heart rate and BP. Even with a sleeping tablet I only got 4 hours sleep and exhausted. 

I can't relax trying to get a doctor to come out. They won't be pots specialist but wondered if any general anxiety meds can keep a lid on things that I could ask the doctor for? Just need to stop this hyper feeling so I can rest.

Feeling stuck again. No idea how to get through this. Before this setback I might have odd bad night with this but not 3 weeks of it. Had seemed to be turning the corner on Fri but went downhill over weekend.

 

[issie]

The only thing I found that worked for me, medicine wise, was Tramadol.  Very low dose and cycle on and off as to not get addicted or it stop working.  I found it worked better with a Bentyl, which was a muscle relaxer and very mild.  Tramadol is considered a narcotic in the States.  But 1/4 to 1/2 of a 50 mg. Was enough to take the edge off.  It works on all the neurotransmitters including glutamate which is the excitatory part and connected to the sympathetic nervous system.   It also works on the opiate receptors which seem to be a better receptor (with me) to tweak when it comes to flight or fight.  

Also, Motherswort helps and lemon balm.  And black strap molasses.   

Sorry you are having such a time.  It is so miserable, and not getting sleep makes it so much worse. It sounds you are not only having POTS, but are back in a ME/CFS crash too.  I have that happen a good bit too.  We over do it and then have PEM and it throws us down again.  

Hang in There!

[Pistol]

@Chuske - when I was at my worst with insomnia from POTS I was on the following regimen: 25 mg Benadryl night 1,  0.5 mg Lorazepam night 2, 1/2 of Flexeril 10 mg night 3. Night 4 I would not take anything. This helped quite a bit. Today, if I don't sleep for 2 nights, I take Lorazepam. My doc ordered it as needed, and it does help. 

[Chuske]

Thanks not sure it is a sleep problem directly but instead disruption by these weird symptoms ie feeling odd, hot but my actual temp normal, strong but normal speed heartbeat and feeling hyper but normal hr and BP.  When I get these at night my sleep medication doesn't work as well.

So normally it would get me 5 hours sleep in a block then usually a bit more after awakening for a while. Last night I was just settling off to sleep at 10.30pm and the attack started and last an hour then I took my sleep medication and slept 12 till 2.30.  then I slept again 4 till 5.30 with a bit more medication. Both times I was woken by feeling hot and strong heartbeat and feeling on edge.

These recent hyper attacks are odd as fairly normal heart rate but feel a bit adrenaline surge like.  Thing is I can't fathom triggers nor relief. Stomach gas does seem to be a factor but wasn't as bad last night but the attack was worse.  Breathing exercises don't help much compared to if I get mental anxiety. So not sure if ANS or heart or stomach or hormones.

Good news is GP finally agreed to send someone out to do blood tests and urine tests. Also will be tried on low dose SSRI to see if that steadies the ship.

[issie]

I'm still thinking mast cell surges.  You can't sleep with those and they feel like what you describe.   Including the hot flashes.  

What did you eat or drink?  Something that could cause a histamine spike?  Even some medicines can do it.  They do cause that adrenal feeling and anxiety.  

[Chuske]

Last night I had egg and vegetables for evening meal, had the same meal with no problems last week. After I had an apple and an oatcake and some walnuts as a snack

Drink wise ginger tea with food and either water + electrolytes or camomile tea.

I didn't really follow up on the mast cell stuff.  I must do reading when well enough.  I'm not a very allergic person just cat fur and some pollen.

Is there anything simple I can do as a purple bandaid for the mast cell surges that might test if that is the issue?

 

[issie]

Eggs are a high histamine trigger.  And apples for dejurgen and I, will trigger both of us.  It's the fructose.   Chamomile will trigger some, in the ragweed family.  Tomatoes are absolute worst.  Potatoes make me hurt terribly.  

So possibly!

The testing for mast cell is hard to get correctly.  It has to be done within a couple of hours of a flare and when in one, we don't feel like getting to a lab to have them.  Many docs now are treating symptoms.   And with POTS, it's more common than people realize.  They will think they are HyperPOTS and its mast cell related.  

Try to read the thread on Healthrising and links on MCAS. I'll try to get that link for you.  

[issie]

MAST CELL threads

https://www.healthrising.org/forums/threads/mast-cell-histamine-immunotherapy-with-histamine.6233/

https://www.healthrising.org/forums/threads/potential-linking-fm-mast-cells-sleep-deprivation-food-intolerance-exercise-intolerance-and-me.6217/

[issie]

Also ginger is a warming herb and can increase internal heat.  And also is a stimulant. 

https://www.verywellfit.com/ginger-tea-recipe-88180

Although ginger is said to aid digestion, drinking too much of the tea can trigger an upset stomach and loose stools in some people. Avoid drinking ginger tea before bed or at night if you have insomnia or find that it keeps you up.