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POTS Flare Feeling Really Stuck - Any Advice?


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I've been diagnosed with POTS (via tilt) and ME for a few years now and it was fairly well managed I was a bit limited in walking, I don't have EDS and prob not hyper-adrengeric.  Then 5 weeks ago it got a lot worse, I started having worse anxiety and getting more fatigued so much so I found it hard to sit up for evening meal and my stomach symptoms of trapped gas were also worse and seemed to be in turn affecting my POTS symptoms and giving me chest pains that were relieved totally if I burped.

Then 3 weeks ago shortly after dinner I had a sudden hyper feeling like I would imagine if I'd had lots of caffeine (but I never have any) and had a brief spell of high heart rate and sweating nd then my legs started shaking and spasming.  At the time I assumed it was a panic attack.  After that was mostly bedbound with short trips downstairs and was slowly improving until monday when I had the hyper feeling again on waking and none of my usual anxiety interventions would help.  Then after lunch I had another high heart rate spell and called for medical help, para-medics were sent and my ECG/EKG was fine and blood sugar normal and BP 145/80 (it was 115/75 after they left on my home monitor so I suspect it was up due to the stress of them being here) and normal blood sugar.  They didn't seem concerned about the hyper feeling.  I felt hyper all day until my wife gave me a very deep massage and then I had the legs spasm/shake again.

Yesterday I was alright but today had another short spell of high heart-rate from sleep (meaning I only had 4 hours).  I called my GP but her attitude was that she couldn't help me unless I could get to the surgery as they only do home visits for the elderly.   She felt it was likely all POTS + anxiety and should up my Ivabridine and come in if things didn't improve, even though I told her I can't get downstairs.

So what to do?

How to improve myself and get better without further medical support or so I can get more tests?  I've had a lot of anxiety recently, but how to manage my POTS, sleep and anxiety around these occaisional hyper feeling attacks (these have only happened very rarely in the past and not all day like monday)?  I need to build up sitting so I can at least cope with wheelchair rides and be able to manage getting downstairs.

Feeling really lost as rarely been this bad.  Any advice?

Has anyone else had the hyper-wired feeling before a heart rate increasse due to their POTS?

 

 

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Hello @Chuske - I am so sorry that you are going through that!!! I am familiar with these "spells" as I also experience them, except I take actual autonomic seizures as a result. I was diagnosed with hyperadrenergic POTS. What I have found to be helpful for these flares is ample rest with slowly increasing exercise TO TOLERANCE, increase fluids and salt intake, avoid big meals but eat 6 snacks a day and minimize time spent talking ( this is actually a big feat for me when ill ). I stress that rest and exercise are very important - the rest calms the ANS and the exercise maintains - and even improves - the orthostatic abilities. Here are some exercise tips from Dysautonomia International: 

dysautonomiainternational.org/page.php?ID=43

I usually begin with abdominal and leg exercises when confined to the bed and get up to stand every hour at least. Then I graduate to sitting exercises and eventually to standing. I also find it helpful to stand with back and shoulders against a wall and bending the knees - that helps me with orthostatic intolerance. 

Again - water and salt intake are essential for me, since they increase the blood volume and therefore can improve our symptoms. 

For anxiety or during hyper-attacks I try deep breathing exercises, here are some tips on how to do them ( they can greatly reduce the stress hormones ) 

https://www.verywellhealth.com/how-to-do-deep-breathing-exercises-1945350

I hope these tips can help you as well as they help me getting through a flare. The only other thing I know is patience and knowing that the flare WILL end. Best wishes!!!!!!

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Thanks @Pistol, really appreciate you replying.  Not sure if I'm hyper pots or not but BP generally normal ie 105/74 so maybe I don't but ANS sure does seem messed up.

I'll try all that advice as and when I can. 

At the moment the adrenaline rushes are wrecking my sleep often best I can do is 3 hours proper sleep and a couple of hours deep dozing.  I use Zopiclone but I think as I be used it more during this dip its benefits wearing off and seems to make the adrenaline rushes in the morning worse. Trying to get my gp to switch me to Gabapentin. Waiting to hear back. If I could sleep better it would really help.....  

How do you guys manage when sleep is bad I'm so weak and exhausted I can't get downstairs at all right now. Hardest part was thought I was turning the corner at the weekend only to start getting this jittery/adrenaline feeling with oscillating HR but fairly stable BP. 

 

Also my adrenaline rushes I feel very physical not mental and get funny feeling in adrenal/kidney area. HR even lying goes up and down in waves between 70 and 110. Early evening it  settles to 65. Just annoying they start at 3am ish

 

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I didn’t sleep more than a few hours a night for 2+ years until I was put on teeny tiny dose of mitrazipine. I still have a few nights a week where I wake up early or am awake for an hour or more but getting proper sleep really helps.

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2 hours ago, Chuske said:

How do you guys manage when sleep is bad

Well - insomnia goes along with high norepinephrine ( adrenaline ) levels. Before I stabilized on my medication combo I also could not sleep. I would fall asleep easily but woke up after 3 hours - the time when normally adrenaline levels drop and allow for deep sleep. It took years for my autonomic specialist and me to come up with the right combo of meds to create a level of balance, so don't expect to be able to handle this all on your own. 

2 hours ago, Chuske said:

Not sure if I'm hyper pots or not but BP generally normal ie 105/74 so maybe I don't but ANS sure does seem messed up.

You don't have to have HPOTS to have adrenaline rushes, any ANS malfunction can cause your symptoms. As I mentioned before - in the way of self treatment the only thing you can do is to increase salt and water intake ( to improve your volume ), compression hose ( to aide proper circulation ) and a good balance of rest and exercise. This can be helpful but most likely will not be the cure. If you look under the information resources tab on this web site and click on POTS you will find many helpful articles that explain what is going on and what you can do. 

In my case I did not find help until I was referred to a capable autonomic specialist that understands all of the intricacies of this condition. I understand that there are not many specialists in the UK but you may want to look at our physician listing ( under the physician tab ) and seek treatment from a specialist. 

I truly wish you the best - I know how incredibly difficult it is to live with this beast and how frustrating it is. But please know that there is hope - many of us here were able to improve to a degree. Be well!!

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Things got more tricky my POTS specialist just retired (Dr Jeffery's,Exeter,Uk) and there is no replacement and my GP has little experience of POTS and not willing to try Gabapentin without a specialists say so and other drugs such as nortriptyline, amitriptyline and mitrazapine I tried in the past with no benefit or sometimes bad reactions. So I have no knowledgablemedical support.

I could try private consultation with Sanjay Gupta online but not sure how much he can do as a private specialist in diff part of country and whether my GP would act on his advice etc.

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It sounds a lot like MCAS. Goes along with POTS. And you can't sleep with it.  Sometimes certain foods will trigger it.  I'm trying a new approach for managing it and no longer using antihistamines.   There is a thread on here about it.  

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10 hours ago, issie said:

It sounds a lot like MCAS. Goes along with POTS.

I just want to clarify that MCAS is not common or present in all POTS patients, just as not every POTS patient has EDS. But there are some people who have both - MCAS and POTS. 

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So many people don't recognize that MCAS is a huge issue and can trigger a POTS response. I didn't know it until I started working on my own MCAS.   (If you go way back, like 10+ years, on here, we had lots of discussion on MCAS and our journey finding it and getting it acknowledged.  Mayo in AZ now test POTS patient for it, as my handing them a book of research had them look into it.)  Many of us with both POTS, MCAS also have EDS too.  We call it a trilogy.  It seems to play into things.  I'm HyperPOTS with high NE levels and can relate to your anxiety feelings.  The norepinephrine helps speed the heart up to aid in moving blood and oxygen to the much needed heart and brain.  It is very likely compensatory response.  If you can move your legs more to help your heart pump blood, that response calms down some.  I use a bounce ball, as a leg rest, in front of my chair and bounce and fidget my legs on it and that does help.  

Addressing MCAS, was when my POTS symptoms got better.  Before then, was most awful.  But I'm using a new approach to this and not using antihistamines, very often, and only an H1 if absolutely necessary.  Trying to get H2R and H3R to activate.  There is a thread on here that talks about it.  

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One other thing we figured out by trial and error, for me.  Not all people need extra salt.  In fact it was most detrimental to me.  I have kidney issues and that too can go along with POTS.  Some have low renin and aldosterone.   Florinef was a diaster for me, as was adding more salt.  Normally with both those things being low, they use massive diuretics.   The Mayo docs said that could NOT be done as I already had low blood volume and did not need to dehydrate on top of it.  Later, we also figured out I have too thick blood.  So some of the issues with blood flow was its consistency.   So I vasodilate,  not vasoconstrict.   This is opposite of what "most" POTS people do.  But this is what I need to do for my issues.  I also thin my blood with enzymes.  

I have had all this since a child and I'm now 60 and still alive and "kicking".  Had a pretty good life despite myself. A person can learn to compensate and make adjustments to "have a life".  But we are all different and we don't fit into the same mold.  There will be trial and error to find your own "purple bandaid".  

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Hi @issie.  Thanks do you know which MCAS thread? My sleep is still bad so struggling to read much.  My GP wondered if Phenergen (Promethazine) might be a good option for sleep but you are saying you are avoiding anti-histamines? Is there a reason for that?

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9 hours ago, issie said:

So many people don't recognize that MCAS is a huge issue and can trigger a POTS response. I didn't know it until I started working on my own MCAS.   

I think most people who frequent this board know that a subset of dysautonomia patients have MCAS.  I agree it is important for new patients to read about MCAS and think about whether it applies to them, and get tested if it is a possibility.   But probably hard for users on this board to diagnose other members.  Chuske also didn't mention the allergic symptoms which I understood were associated with MCAS.

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Here is the link to that on MCAS.  

I used phenergan before we knew what my problems were.  But most all antihistamines,  over time can affect brain function.  That is what happened with me.  But having a MCAS DX, I was doing 3 types of antihistamines and a mast cell stablizer.   So after nearly 8 years of daily use, it really started showing up.  

I've written more on Healthrising about it and you can do a search and pull that up.  I don't know if they will let me link here.  Look under Issie.  Same with this forum, you can find information that way.  

 

 

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On 5/20/2020 at 7:18 AM, Chuske said:

I've been diagnosed with POTS (via tilt) and ME for a few years now and it was fairly well managed I was a bit limited in walking, I don't have EDS and prob not hyper-adrengeric.  Then 5 weeks ago it got a lot worse, I started having worse anxiety and getting more fatigued so much so I found it hard to sit up for evening meal and my stomach symptoms of trapped gas were also worse and seemed to be in turn affecting my POTS symptoms and giving me chest pains that were relieved totally if I burped.

Then 3 weeks ago shortly after dinner I had a sudden hyper feeling like I would imagine if I'd had lots of caffeine (but I never have any) and had a brief spell of high heart rate and sweating nd then my legs started shaking and spasming.  At the time I assumed it was a panic attack.  After that was mostly bedbound with short trips downstairs and was slowly improving until monday when I had the hyper feeling again on waking and none of my usual anxiety interventions would help.  Then after lunch I had another high heart rate spell and called for medical help, para-medics were sent and my ECG/EKG was fine and blood sugar normal and BP 145/80 (it was 115/75 after they left on my home monitor so I suspect it was up due to the stress of them being here) and normal blood sugar.  They didn't seem concerned about the hyper feeling.  I felt hyper all day until my wife gave me a very deep massage and then I had the legs spasm/shake again.

Yesterday I was alright but today had another short spell of high heart-rate from sleep (meaning I only had 4 hours).  I called my GP but her attitude was that she couldn't help me unless I could get to the surgery as they only do home visits for the elderly.   She felt it was likely all POTS + anxiety and should up my Ivabridine and come in if things didn't improve, even though I told her I can't get downstairs.

So what to do?

How to improve myself and get better without further medical support or so I can get more tests?  I've had a lot of anxiety recently, but how to manage my POTS, sleep and anxiety around these occaisional hyper feeling attacks (these have only happened very rarely in the past and not all day like monday)?  I need to build up sitting so I can at least cope with wheelchair rides and be able to manage getting downstairs.

Feeling really lost as rarely been this bad.  Any advice?

Has anyone else had the hyper-wired feeling before a heart rate increasse due to their POTS?

 

 

The symptoms you are mentioning sound very typical.  I noticed they occurred after eating.  Are there certain foods that are triggering this?  Are you eating a large amount of food?  I also have trapped gas and have never figured out how to totally relieve that

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@yogini I found dairy and gluten to cause that gas feeling. I'm not celiac, but sensitive to both.  And foods are my worst trigger for MCAS.  Especially nightshades.   Dairy is usually eliminated by  many with autoimmune dysfunction and gluten eliminating takes down a lot of inflammation.   

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Thanks little energy to reply but sounds like anti-h can be useful in short-term but harmful on long term. So might be worth a shot to break me out this insomnia spell then get off it. 

I'm finding ginger tea is helping a bit with stomach plus smaller portions more often.

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You need sleep to recover and calm the autonomic system down.   That's for sure.  But there can be a bit of a worse surge of histamine response when coming off.  I thought I'd never get off them.  But just an H1 is less dangerous than using an H2 or H3 which both those receptors help moderate the histamine that the H1R releases.  Histamine is needed to activate those two receptors.   

I did find them to help my sleep.  But, long term, wasn't good for me.  Mast cells won't degranulate when you sleep.  But, can make sleep impossible if they are going off while you "try" to sleep.  

Another friend and I are in the middle of experimenting to put this all together into a paper.  We are close to having details worked out, it will likely be on Healthrising.  He and I diligently research and are near to some pretty major hypothesis that connect a whole lot of different things.  His name is Dejurgen and his comments are well worth reading.  He gets more of the science in his comments.  I try to be more "lay" person commenting.  Trying to make it less technical for us with brain issues.  

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On 5/23/2020 at 11:35 AM, issie said:

One other thing we figured out by trial and error, for me.  Not all people need extra salt.  In fact it was most detrimental to me.  I have kidney issues and that too can go along with POTS.  Some have low renin and aldosterone.   Florinef was a diaster for me, as was adding more salt.  Normally with both those things being low, they use massive diuretics.   The Mayo docs said that could NOT be done as I already had low blood volume and did not need to dehydrate on top of it.  Later, we also figured out I have too thick blood.  So some of the issues with blood flow was its consistency.   So I vasodilate,  not vasoconstrict.   This is opposite of what "most" POTS people do.  But this is what I need to do for my issues.  I also thin my blood with enzymes.  

I have had all this since a child and I'm now 60 and still alive and "kicking".  Had a pretty good life despite myself. A person can learn to compensate and make adjustments to "have a life".  But we are all different and we don't fit into the same mold.  There will be trial and error to find your own "purple bandaid".  

Hi @issieI can relate to this! The first few years of having pots I had not trouble with salt and was put on Florinef which did help symptoms. 
But the last 3 years has been a struggle, I’m still on florinef but now consuming salt makes my adrenaline way worse and I sometimes get pain in lower back. 
I’ve tried reducing it but my bp goes too hypotensive and my fatigue/brain fog gets way worse. Very frustrating and all the specialists I’ve been to have brushed me off. My resting bp is low but my adrenaline gets bad at the same time. 

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2 hours ago, Clueingforlooks said:

Hi @issieI can relate to this! The first few years of having pots I had not trouble with salt and was put on Florinef which did help symptoms. 
But the last 3 years has been a struggle, I’m still on florinef but now consuming salt makes my adrenaline way worse and I sometimes get pain in lower back. 
I’ve tried reducing it but my bp goes too hypotensive and my fatigue/brain fog gets way worse. Very frustrating and all the specialists I’ve been to have brushed me off. My resting bp is low but my adrenaline gets bad at the same time. 

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.

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Depends on if you need to vasoconstrict or vasodilate on the mestinon.  Some find benefit if there is a need to vasoconstrict.   I personally need to vasodilate.   And that for me was a disaster.  Each person is different.  

I haven't tried the other medicine,  can't comment on it.  I personally dont try to take down, my at times, higher blood pressure.  I'm HyperPOTS for sure.  I have variable swings in my blood pressure and can go from somewhat high to drops with the orthostatic part of this illness.  But I don't treat that as I feel that too is a compensation.   

I do however feel the doc you spoke of has some very good insights into many different things.  It is hard to find a doc who has insight into all the complexity this can involve.  So much ties into it.  I haven't spoken to him personally,  but have followed him, for awhile now, on media. 

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I have some methylation issues and taurine for me wasnt something I could do. 

Taurine helps to calm the sympathetic system as it goes down the GABA pathway.  There is also a strong connection with sympathetic response due to glutamate and calcium signaling, plays a part here.  If you go back some years ago on this site, I kept a hypothesis of glutamate being a strong issue with us POTS people.  And calcium channel dysfunction as a possible issue. That is now all coming to light with science, finally.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994404/

Thus, taurine-fed mice have a functional alteration in the GABAergic system. These include: increased GAD expression, increased GABA levels, and changes in subunit composition of the GABAA receptors. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994392/

We find that taurine effectively reduces glutamate-induced Ca2+ influx via ionotropic glutamate receptors and voltage-dependent Ca2+ channels in the neurons,

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Not bad, if you tolerate it well.  It is calming your hyper response down by upping GABA which is a calming thing.  You have one of your "purple bandaids".  Keep searching, there are more.  

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https://www.naturalmentalhealth.com/blog/taurine-supplements-anxiety

Taurine is an amino acid that increases glycine and GABA to calm the brain (AKA ease anxiety).15 It also protects the brain by reducing the harmful effects of excess glutamate.16 I consider taurine when I see someone with mood instability along with anxiety, but it may also be helpful for anxiety alone. 

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