Chuske

The one thing I don't ever really have is high blood pressure. 120/80 is generally highest I see outside of medical environment (white coat syndrome 😉).   105/70 is typical.

That might class me as less hyper pots but agree the rest fits

As for pulse pressure during the attack my BP was 119/73 so prob wider than normal

Sorry for all the questions @issie

What foods do you eat? Are any fruits ok? I'm trying more just to change my evening food.

The list you sent suggests last night's meal might be bad if I am histamine sensitive or MCAS no idea if I am. It had spinach, tomato,egg and peppers in it.......

@issie Aren't eggs low histamine? Or are they just common intolerance / allergy food?

I'll cut out tomatoes for a bit. What about sweet potato is that better than potato? I'm not going to change diet much yet, as needs careful thought to avoid malnutrition.

30 minutes ago, issie said:

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/

Thanks looks very complicated! About the only thing I got from that is nettle tea in the evening is a good idea. I didn't really grasp all the different histamine receptors and what to take to get them in balance

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?

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.

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.

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.

Love this thread, couldn't not post in it to see if anyone else has natural, food or similar things that help? 

For me digestive stomach bloating can be helped by ginger and lemon tea and fennel seeds.  

Camomile tea can help with relaxation and nettle tea great for helping me pee better and have lower allergic reaction s.

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.

On 6/1/2020 at 3:08 PM, green said:

I think breathing is important and lots of things can interfere with our ability to breath comfortably. 

Hello Chuske

You asked about HRV. I have struggled to find people who are experts in HRV and gotten nowhere. It seems to be a theoretical thing with little practical implementation. Commercial instrumentation exists that offers to help you monitor your HRV, but the science is not settled even on what "HRV" means.

Respectfully,

Green 

Thanks @green I've never tried HRV but had heard it mentioned as a way of getting a view on ANS dysfunction. Must admit I didn't look too deeply. Sounds like it is less useful than it first sounds if there is a lack of consistent definition.

Also great you found a way to improve your breathing. For me stomach issues can sometimes cause me problems. So I find it best to do these exercises before eating. Agree though that this only works if your breathing isn't disrupted by things out of your control.

@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.

@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. 

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

31 minutes ago, JimL said:

Sure, but at 58 and my fusions, IDK. It is what it is. 

Sure. Good thing is you are feeling better than you were though.

50 minutes ago, issie said:

Consider a possibility of also having ME/CFS.  A research friend of mine presented as you are and it is ME which is a worse form of CFS, some interchange what they call it.  There are doctors in the UK that recognize it.  But CBT is NOT the thing to do for it.  (Despite their claims.)  I also have ME and that is an additional DX to POTS.  My presentation is not as bad as my friend.  

@issieYes I have ME and POTS I had ME first and almost totally recovered from it in 2006 but then started getting POTS as well in 2010.  That is the tricky bit my energy prob tanks more than someone with only POTS.

Psychology side is actually important for my ME side of things but I use better things than CBT which I never saw any benefit from.  Find any kind of stress really tanks my energy. Nutrition, exercise,pacing, sleep etc all important too.

At my best in 2012 I was able to travel and walk long distances but since 2014 POTS has been worse and in turn affects the ME.  I was ill but functional until 5 weeks ago when it all relapsed badly.

@PistolOk thanks. Sounds like your workout is not something I can do in one go yet as tried several leg lifts yesterday and then had really bad fatigue the rest of the day so I'm having to really spread things out.

So I'm starting with doing 1 or 2 reps each hour and aiming to build up.

What I am  finding is my body is adapting better to less sleep so am able to do a bit more on bad days. I'm also managing 5-6.5 hours sleep so getting better than 3-4 last week that left me in extreme exhaustion all day.

I'm stuck upstairs at the moment so can't go out but on sunny days I open a window and lie on the floor in the direct sun for a few minutes to sunbathe. 

In terms of stairs when I go for a walk sometimes I go a few steps down and back up. I last got downstairs two weeks ago just before the flare got worse. Hoping to get down next week.

I'm also resting on a different bed in the day (diff room) so I get a change of scene and slightly better for sleep hygiene to be out of sleeping bed.

I'm experimenting with doing exercise then deep relaxation after. Fingers crossed I can work thro this without needing too long rehab.

19 hours ago, JimL said:

Maybe? Neck/skull issues can cause POTS symptoms, like chiari malformation or cervical cranial instability. I have had a lot of spine issues and last year I had C2-4 fused. Already had C4-6 fused as well as L4-5. A month after the C2-4, most of my POTS stuff went away. I still have occasional issues, but not as bad. 

I often wonder if any neck postural issues can have some impact on POTS especially after seeing a video of a doctor who treats mild CCI with realignment and said even severe cases that surgery will ultimately fail in long term if patient doesn't correct posture.

Wow. That is cool. Always wondered how the pacemaker nodes interfaced with the ANS. 

Thanks for that.

@Pistol in terms of your advice to stand up every hour to try and limit deconditioning did you still do that on days when your sleep was very poor? 

Quite hard to judge how to balance resting v activity to avoid increased fatigue from overdoing it and from deconditioning. A few weeks ago before the flare up I could walk 300-400 m in one go and manage stairs any time I needed. Now I can't do stairs and limited to short walks to per or fetch something from another room upstairs. I maybe doing 100-150m  walking over the whole day on a good day in lots of short chunks (it's about 10m from one room to the next).

My thighs have got thinner so I'm trying with the walks and some legs exercises in bed to keep me moving and when in bed to sit up for some of the time. 

At the moment things seem stable but keen to build up to limit muscle loss. Do I sound on the right track? I've rarely been this bad so trying to find my groove.

I'm thinking of doing deep rest after each walk to try and restore energy.

Good advice thanks. Sorry for all the questions but I have one more.  I'm finding the hyper feelings I get relate to how much sleep I get ie more sleep more hyper, poor sleep then often very much more calm body (but frustrated mind at less sleep!).  

I'm now managing around 6 hours sleep but I prefer 7-8. By the last sleep cycle I'm awakening from dreams a bit tachy and hyper, water helps the tachy but not found a way to calm the hyper feelings. 

Thanks.

One question is how did you guys adapt sleep hygiene when needing a lot of bed rest? Still sleep issues making it harder to up activity and break out.

Thanks for the advice and encouragement it really helps.

Yes I'm on ivabridine 5mg.   My specialist seemed to only really have that as an option. It does help a bit. 

I think he used different treatments for those with EDS.  He just retired due to ill health so I'm without specialist advice at the moment.

The POTS treatment here in the UK seems fairly basic compared to the workup some of you guys got.

Thanks to advice of ppl on hear I be been putting a few strategies in place and making some progress.

Things that have helped:- 

Increasing fluid intake. Also useful to hydrate more if notice adrenaline rush starting.

Having more smaller portion meals

Resting more and doing lying exercises on days I have energy

Managing digestion with ginger tea

Regular slow breathing exercises. Particularly useful for nipping adrenaline rushes in the bud.

Challenging anxiety and "what if" thoughts.

Trying to avoid the news or anyone that is not solution focused regarding POTS.

My whole strategy is to do as much as I can to calm the ANS by reducing stress and triggers of adrenaline rushes such as dehydration and over-doing things physically. I'm hoping this stabilises things enough that I can start increasing activity slowly.

But your saw a positive change so why not do it as much as practical and see if benefits do start to last? I'm seeing some benefit already, need to do it a lot tho.

EDIT this was responding to a reply that has disappeared. I think the user left the forum.