POTS Flare Feeling Really Stuck - Any Advice?

[Clueingforlooks]

On 5/24/2020 at 10:09 PM, issie said:

When your blood pressure drops, your body is trying to bring it back up with a higher, faster heart beat.  That is your body trying to "right" itself.  It is a compensation.   

Many times people "wrongly" feel that symptoms are illness......when in effect it is your body trying to correct a worse problem.  Suppressing compensation will go very wrong.  As your body has a built in intelligence to try to repair itself.  Just figuring out where the  core" issue is, instead of masking "symptoms", is a better approach.

@issieTotally understand what you mean! But it seems that Florinef makes me both better and worse off at the same time. Like I’m bad either way if I bump up my blood pressure with salt or more florinef my adrenaline is actually worse not better even though it’s stopping my blood pressure dropping as much. So I’m unsure where to go from here. 

[issie]

I just added more information on Healthrising thread on MCAS and some other helps for it and some of the other connections some of us are making, for those interested.   

[Chuske]

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.

[Pistol]

@Chuske - good job at taking care of yourself!!! I assume you have mentioned this before but: are you taking any medications for your POTS symptoms? Depending on the type of dysautonomia you have there can be different meds that help. Once my docs found the right medications I was able to stabilize to a degree where this condition became bearable. But still - listening to the everchanging demands of the body is essentially what helps the most. Every day is different, therefore I have to have the ability to do WHAT I can WHEN I can do it. For me that meant to stop working and staying mostly at home. If I know I have to be active for any reason ( such as appointments etc ) then I take precautions by resting and increasing my fluids beforehand. 

Good that you continue to exercise. This has been essential for me to maintain my strength, fight fatigue and provide proper sleep patterns. 

[Chuske]

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.

[issie]

12 minutes ago, Chuske said:

 

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

I started my search for answers and managed to get to Mayo in Arizona.  This was before they knew very much about POTS, EDS, MCAS connections, or very much about POTS or MCAS overall.  Mayo really tries to find out your issues.  (But it takes really good insurance as it is very expensive.)  You go from one doctor to the next and one test to the next.  I had 3 visits there.  The first was 3 weeks for 5 days - 8 hours spaced through the day, second was 2 weeks with same time frame, and 3rd was 2 weeks same time.    I probably have had the absolute best evaluation possible. I've also been in many research studies with other testing and have gotten more of my WHYs answered.  And I'm an  autodidact researcher myself.  So there is still a lot to be learned.  Don't give up searching for your WHYs.  There are answers and "purple bandaids" to be had.  

[Chuske]

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.

[KaciCrochets]

Taking magnesium glycinate helps me with sleep. It's easy to be deficient. Making sure I have the right amount of magnesium, potassium, calcium, salt, and B vitamins is the key for me to remaining functional. If I still can't sleep, I take a small amount of hydroxyzine before bed, which calms the stress hormones. Hope you can get better sleep soon!

[issie]

Motherwort or Black Strap Molasses calms my POTS surges and helps me.  Also, lemon balm is calming.  Of recent, I'm finding nettle tea about an hour before bed, gives a slight histamine response and then has a really nice calming affect and I sleep much better.  

[Pistol]

I agree with @KaciCrochets, vitamins amd minerals are often deficient in POTS. I was very low on Vit B12, Vit D and Ferritin. Deficits in the levels of these substances leads to fatigue, sleep disturbances, cognitive issues and more - once I supplemented ( I am taking maintenance supplements on all 3 ) sleep and energy improved. 

[Chuske]

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. 

[Pistol]

@Chuske - you can't ask too many questions here, that is what this forum is made for!!! --- I personally have found only scheduled IV fluids to finally stop the high adrenaline related symptoms, and so have my sisters that suffer from the same type of POTS.  But we all have a quite specific type of HPOTS. I know that there are several other members here that also benefit from IV fluids for the treatment of POTS ( all types ). I am aware ( and sorry ) that IV fluids are not a recognized treatment for POTS in the UK, but maybe you will find an understanding and more openminded physician that is willing to give it a try. Just one liter of NSS infused over at least 4 hours can totally interrupt the faulty reactions of the ANS and provide symptoms relief. 

But here is an article from a study by Dr Blair Grubb, one of the leading autonomic disorder specialists in the US. It lists medications that can help for HPOTS. SSRI's especially help with the high adrenaline related hyper feelings you describe, since they balance the levels of certain neurotransmitters. What was MOST pleasant and helpful for me and my sisters is Bupropion, a SNRI ( works directly on norepinephrine ). It GREATLY improved energy, sleep patterns and mood, which allowed for a more balanced sleep and activity pattern. Unfortunatley I developed acne on it and had to stop it, but I take Escitalopram ( SSRI ) instead and it also is extremely helpful. Maybe your physician will consider one of these medications ? Here is the article: 

http://theoicenter.com/Medical-Care/POTS-Hyperadrenergic-Subtype.html

Medications For Hyperadrenergic POTS

In hyperadrenergic POTS, there is an increase level of norepinephrine when standing. The following recommendations should be considered:¹

Therefore, patients often respond best to agents that block norepinephrine or its effects.^{2, 3}

• One agent that is particularly helpful is clonidine HCI in either pill or patch form.
  • Start the oral form at 0.1 mg PO 1 to 2 times a day and gradually increase as needed.
  • Once a dose has been found that works, the patch form of clonidine is quite useful. It provides a constant and continuous amount of the drug for up to 1 week at a time.
• The combination of labetalol and carvedilol works in some patients. Use of only one is less effective because of the potential to make symptoms worse by the unopposed stimulation of carvedilol.
• Methyldopa has been reported to be useful in some patients, as has phenobarbital.
• In addition, both the SSRIs and SNRIs (norepinephrine reuptake inhibitors) are useful in select patients.

[issie]

Try to evaluate WHY, when you have symptoms.   What is your body doing and is it trying to compensate for something.  Many times, we think a "symptom", as being "the" issue.  When in fact it is the body trying to "right" a worse problem.  Suppressing a "compensation " and not getting to the "core" problem.....may NOT be the best solution.   

I think many masking medicine used are not the "best" solution.  It doesn't get to the "core" problem.  And my being HyperPOTS too, I know how uncomfortable the over response of high norepinephrine is.  But it is trying to help me get blood to my heart and head by increasing my heart rate to do that.  Getting leg muscles to help the heart do that, can assist to calm the response down.  I like one of those bouncy balls and use it as my leg rest.  I fidget my legs on it and gently bounce them on it.  It helps with things and to keep things moving.  

Having laid still for so long, movement may help as it could be a need of that.  I also find that thinning my blood some with herbs is helpful with blood flow.  (They did find a genetic link of too thick blood with me. And that is being found more often now too.) 

[Pistol]

5 hours ago, issie said:

(They did find a genetic link of too thick blood with me. And that is being found more often now too.) 

This is the case in my family as well. We all have high MCV and MCHC, meaning the red blood cells are too big, which results in "thick" blood. We all were born with this. I believe it could lead the ANS to be triggered to vasoconstrict b/c it needs more pressure to pump thick blood ( my theory only ). That may also be the reason why IV fluids help us so much!!!!

[issie]

1 hour ago, Pistol said:

This is the case in my family as well. We all have high MCV and MCHC, meaning the red blood cells are too big, which results in "thick" blood. We all were born with this. I believe it could lead the ANS to be triggered to vasoconstrict b/c it needs more pressure to pump thick blood ( my theory only ). That may also be the reason why IV fluids help us so much!!!!

Mine had to do with Factor 8 and Collagen Binding.  Found when they found out I have the worst genetics for CIRS too.  Has to do with clotting factors.  We are thinning my blood with Serrapeptase,  Lumberkinase and ginger.  Also Ginko helps reperfusion issues and thins blood too.  

And I do have to vasodilate.   

[Clueingforlooks]

7 hours ago, Pistol said:

This is the case in my family as well. We all have high MCV and MCHC, meaning the red blood cells are too big, which results in "thick" blood. We all were born with this. I believe it could lead the ANS to be triggered to vasoconstrict b/c it needs more pressure to pump thick blood ( my theory only ). That may also be the reason why IV fluids help us so much!!!!

My MCH is always just high out of range but my doctors have never mentioned it and I’m not anaemic. Would that be part of the thick blood problem too?

[Pistol]

@Clueingforlooks - I was told by my physicians that normally MCV etc is elevated due to either high alcohol use or B12 deficiency. But in most cases slightly elevated values do not concern doctors since in some people they just run high. 

10 hours ago, Clueingforlooks said:

My MCH is always just high out of range but my doctors have never mentioned it and I’m not anaemic.

Have they checked your Ferritin levels? This is an indicator of how much iron your body stores. Someone on this forum once mentioned that this often is low in POTS, so I had it checked and indeed - it was low, although I had normal iron. I took iron supplements for a while and my ferritin came up, so I stopped. I have read that macrocystosis ( high MCV, MCH and MCHC ) is caused because the RBC's are too big and therefore carry more hemoglobin per cell, and that this will not necessarily affect the HGB value in the lab. In my case the hgb reading was low-normal but my RBC's were low and the MCH etc too high - meaning exactly what was said above. So it was a type of anemia, with the ferritin being low. I had to supplement in both B12 ( found to be low ) and ferritin. So maybe you should ask to have B12 and Ferritin levels checked????? 

[Chuske]

@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.

[Clueingforlooks]

16 minutes ago, Pistol said:

@Clueingforlooks - I was told by my physicians that normally MCV etc is elevated due to either high alcohol use or B12 deficiency. But in most cases slightly elevated values do not concern doctors since in some people they just run high. 

Have they checked your Ferritin levels? This is an indicator of how much iron your body stores. Someone on this forum once mentioned that this often is low in POTS, so I had it checked and indeed - it was low, although I had normal iron. I took iron supplements for a while and my ferritin came up, so I stopped. I have read that macrocystosis ( high MCV, MCH and MCHC ) is caused because the RBC's are too big and therefore carry more hemoglobin per cell, and that this will not necessarily affect the HGB value in the lab. In my case the hgb reading was low-normal but my RBC's were low and the MCH etc too high - meaning exactly what was said above. So it was a type of anemia, with the ferritin being low. I had to supplement in both B12 ( found to be low ) and ferritin. So maybe you should ask to have B12 and Ferritin levels checked????? 

Yes my ferritin levels were checked in the same blood test and they’re definitely all good. I didn’t have my b12 checked this time but in the past it’s been good (and I’ve had this high MCH for quite a number of past blood tests too). Next time I have bloods I’ll get b12 checked again, otherwise I guess it’s just the way I am. 

[Pistol]

21 minutes ago, Chuske said:

 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? 

Hi @Chuske - yes, I stand up every hour, even if just for 1 minute. When I get that bad I stay in bed but get up once or twice an hour and do leg exercises 3 x a day. I have a rowing machine which is perfect for me. I try to do it at least once a day for 1 minute on bad days, more often on regular days. In the way of leg exerises in bed: I place a pillow on my shins with knees together and bent and then bring the legs down to have heels touch the bed and back up. I do this several times. Then rest and do the pedaling in the air. rest and straightening legs, heels on bed, and push the back of the knees into the bed while also squeezing the butt - this is harder than it sounds but very good for leg muscles. Also: While on your back lift leg off the bed and exptend sideways several times, then switch to other leg. 

Another helpful exercise is lifting soda bottles with your arms while lying down. And anything that strengthens your abs is good for regulating circulation. --- As you see - there are many options of staying active and improving your circulation while stuck in bed. Yes - I do them even when not sleeping. Actually - doing these exercises about 30 minutes before wanting to go to sleep helped me as well. Also drinking a big glass of water before bed. And I have a prescriptions for Lorazepam as needed - so sometimes I take one of those if nothing else helps. 

What also helps is going outside in the sun during the day, at least once. This does something to the body to make us tired in the evening. Do you have a yard or balcony? Try to lie down - or sit - outside for at least 10 minutes a day. 

[Chuske]

@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.

[issie]

5 minutes ago, Chuske said:

Ok 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.

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.  

[Chuske]

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.

[issie]

45 minutes ago, Chuske said:

@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.

You might check out Healthrising forum for ME.  That friend of mine and I research together and have lots of hypothesis as to issues possibly causing all this.  We can put our ideas out on that forum and it isn't moderated.  His name is Dejurgen.   You can look either of us up and read what we think and are finding.  He puts the technical information out.  I have a good bit on POTS too.  And it is all connected.  

[issie]

59 minutes ago, Chuske said:

@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.

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!