E pots

On 7/16/2021 at 11:26 PM, Birdlady said:

Oh my goodness. Thank you for posting this! 

I am having a terrible time with my glucose levels. Last year I bought a glucose meter and my fasting were in the 110's. I could not believe it. My entire life I had always been in the 70-80's fasting. I brought all of this to my doctors including a 200 reading after having potatoes. They both blew it off when I told them I was getting increasingly worried about it. They told me I'm too thin for that problem..../sigh!

I've completely changed my diet the past year, but still having a terrible time. Edit: My fasting is down to 95-100, but I saw a 150 two days ago after eating a small salty snack.

I thought the glucose issues were tied to my beta blocker as they can cause glucose issues too, but if it's just POTS, I would not be surprised at all. 

I do have higher morning blood sugar with adrenaline.  2 yrs ago I barely ate anything for weeks and it was usually 108 every morning but even 123 with more adrenaline 

On 7/16/2021 at 11:26 PM, Birdlady said:

Oh my goodness. Thank you for posting this! 

I am having a terrible time with my glucose levels. Last year I bought a glucose meter and my fasting were in the 110's. I could not believe it. My entire life I had always been in the 70-80's fasting. I brought all of this to my doctors including a 200 reading after having potatoes. They both blew it off when I told them I was getting increasingly worried about it. They told me I'm too thin for that problem..../sigh!

I've completely changed my diet the past year, but still having a terrible time. Edit: My fasting is down to 95-100, but I saw a 150 two days ago after eating a small salty snack.

I thought the glucose issues were tied to my beta blocker as they can cause glucose issues too, but if it's just POTS, I would not be surprised at all. 

Same.  Fasting is usually 108 in morning.  Got it down to 98 doing keto.  I eat only after 6 pm because too nauseaus /upset stomach earlier.  Could not get blood sugar below 87 doing keto n fasting ...fasting was not really intentional.  Was pretty strictly extremely low carb. ...

I've been denied.  My case is a bit unusual because a lot of my doctors notes from the first 5 months of my case I was pretending to feel better than I did.  I didn't want to lose my job and was trying not to get fired.  Also if my employer terminated me prior to paying my bonus they didn't have to give it to me according to my contract.  It was more than my entire annual salary so at the time I dragged my self in and at times could barely stand up and had severe chest pain and diarrhea but pretended to be ok for the 4 days spread over 2 weeks they had me come back at the end of FLMA. I even asked my doctors to write letter saying that I could go back to work.  I could exercise intensly but briefly at the time too which made me look very able.  I was an athlete.   Fast forward now and I have been for over a hundred days sicker than ever bedridden for about 2 months and extremely ill the rest of the time.   I am so much weaker now.  My strengths gone.   There's no way I can work but I have been denied.  I cannot imagine working.  Whats my best next step?  Local SSDI or another attorney.   Also my private disability policy that I purchased  denied me as well.  

Any answers?  In same scenario.   I used to be able to exercise to help now any exertion is too much...no relief. 

I'm not on one currently.  I was on one a yr ago Prozac but lost alot of hair so stopped.  But I did ok off it till now.  I may have overdid exercise a couple months ago leading to this.  I wad stupid to do so much. 

Good idea

Thank you.  Interesting.  I'm needing something to change here.  I have an appointment with the new nurse practitioner that I've never met before on Wednesday. I typically see a different one at the Cleveland Clinic but he is not available. I've been so sick the last couple months. Trying everything lots of bed rest exercise has quite a bit as I can I am drinking probably six liters a day ..probably more with 4 teaspoons of salt.  They put me on the Propranolol and took me off the fluro cortisone.  My blood pressure is now down.  Do you think I should ask to be put back on the Fludrocortisone so that I don't have to drink so much?  

1 hour ago, Jyoti said:

Did it come down, @E pots?    It is just so frustrating and scary to have the regulating mechanism for something so critical as the heart completely out of whack.  Mine has been coming down fairly quickly of late, but I am feeling pretty good (relative to how I feel at other times, not relative to other people!).  But when I am having a flare, it takes a while.  

I hope you are better this morning.

Thank you.  Still on bed.  I'm scared it's going to be a horrible day because of yesterday

Its 67 in bed now.  I've been up a few times thru the night. Made me less able to sleep.  Sleep has been really bad for 2 months now anyway

Not sure what the day will be like.  Usually gets bad for 8 hrs in mornings while in this flare  Diarhea.nausea weak off balance. Waking up is scary because things start to go downhill.   

I know that Lexapro and Prozac are both ssris but I don't know which one would be better? Also have you heard that snris are not good for hyper-pots?  Have you tried Prozac?

9 hours ago, Amy Kann said:

I had the adrenaline issue twenty years ago when my POTS was severe. It was the worst part of the illness. I went on gabapentin 400 mg 3 times a day. It has felt sort of like a central nervous system soother. It’s off label but it was a miracle cure for me.  I built up super slowly-100 mg at a time. Too fast isn’t good. It stopped the adrenaline issue for me. I’ve never gone off it even though my POTS got better- because the adrenaline issue was so hideously unbearably life altering, that I’ve been afraid to risk having it return. I feel for you. I hope you continue to try ways to treat the adrenaline. I think there is an answer out there for you. All my best wishes. 
Amy

What were your adrenalin issues if you don't mind me asking?  I take propranolol but its not enough...in bad flare.  I'm having cramps. Twitches. Tremors. Sleeplessness and feel adrenalin still even with propranolol.  Before propranolol heart palpitations irregular high. Tingles in extremities. So bad.  I have an appt with a nurse practitioner and don't know if I should ask for something

On 3/28/2021 at 9:56 PM, Pistol said:

Oh @Hippopotsamus - I so know where you are coming from!!! I used to think the same way, that I can WILL my way out of my symptoms! That if I ignore/push/force myself to go on despite of my limitations I could go back to normal. And man - did I fight!!!! But then I had to stop denying the reality that this is not going away, that  this is real and I really AM having a chronic illness. That realization turned into depression, I felt like I had given up. And after that I slowly crawled out of it, decided that if I cannot beat this then I will have to accept it. So here I am, still disabled, still limited, still a dysautonomiac - yet so much better off! I now am at peace with it, and I can be gentle on myself, do what I can when I can and not feel sorry for myself. I am - to a degree - in control of things again. 

I believe the causes you mention above are all at play - they are all symptoms and causes of POTS. And the only treatment we can hope for - at this point - is symptom relief. I have been on the SSRI Escitalopram ( Lexapro ) for many years and it has greatly helped me. The high adrenaline levels ( I have hyperPOTS ) caused me to be really high strung and very nervous all of the time. I was always on high alert. This of course caused a lot of stress. The Lexapro has helped me to calm down and feel more balanced. I was afraid of taking it, I thought I might be sedated, or maybe my personality would change. But actually it did not do anything big - I simply noticed after about 6 or so weeks that I felt better, and more balanced. 

SSRI or SNRI are both proven to be effective for POTS symptoms. They help regulating the neurotransmitters that are the culprit for many of our symptoms. My specialist often uses an SNRI, especially Wellbutrin ( Bupropion ) instead - or even along with - an SSRI. I took it for a few weeks but had an adverse reaction ( acne ) from it and had to stop it, or else I would still be on it. If your doctor is open to prescribing an SSRI or SNRI I would try it. But know that it takes 6-8 weeks before you see any effects. 

For me it is a combination of several things: I take a mix of meds: cardiac for tachycardia and high BP, stimulant for brain fog, SSRI for restlessness and mood, Plaquenil for inflammation ... and weekly IV fluids via port for prevention of syncope and seizures. I also salt/fluid load and exercise on my rowing machine when able. But what is just as effective is the fact that I am disabled and housebound and therefore do not have to do anything that could cause my symptoms to flare. If I could not live within my ever changing limits I would be very ill despite all of these treatments. 

So, in other words: for most of us getting control of this illness is not one single thing but rather a complete change of how we live and what we do every day, in addition to meds, exercise/rest, fluids etc. 

 

 

 

Is Lexapro better than Prozac?  I was told SNRI' are not used with H Pots.  Confused.  

On 5/23/2021 at 8:11 AM, Jyoti said:

Exactly!  Like everyone else here, my heart rate goes over 95 when I sit up sometimes.  Taking a shower or washing dishes can get me into the aerobic zone!   But then if I try to get it higher, as the neurologist suggested, I end up coming very close to passing out.  And if I do manage it for a few moments, it does, as you note, come with serious consequences.  

Just a little baffling...   Thanks for your response!

What happens if you get your HR too high?  

I just swam for a long time & it won't come down.  Staying 90 laying down which is normally 55.  Scared

4 minutes ago, Platypus said:

Hi, yes I did come out of it but not for years bc I was not yet diagnosed. Everyone tried to blame it on my anxiety. And later  on my weight, bc I had to stop exercising. It began one night out of the blue after a series of viral infections. I woke up bone dry and did not sweat the whole duration. I started having sudden episodes of tachycardia, only resting or sleeping. And presyncope. I've been having panic attacks since I was little... I hate them and they suck but I know what is and isn't one for me.  Everything that should be stable wasnt... temp, BP, HR. 

I had my gallbladder out in an emergency surgery,  and weirdly I woke up sweating! And my heart calmed down. But only lasted a few weeks. Later on a new Dr explained that they often use pyridostigmine aka mestinon to reverse anesthesia.

Anyway I found a specialist and was diagnosed and started on mestinon. With that, calf compression sleeves, hydration and electrolytes I'm mostly stable again, able to function decently well as far as that goes. It is a balancing act, trying to be gentle with myself but not get too deconditioned.

The flare consumed my life, I barely got out of bed, and both sleep and waking hours were interrupted by the random attacks, which were really scary. 

 

Do you notice the mestinon helps alot?  I take it but not sure.

On 4/15/2021 at 4:22 PM, TorturedSoul said:

Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day.  However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated?  It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down  short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

How long to pull out if it?  I'm on 9th week.  Doing 6 liters h2o. Salt. Hard to eat so weak.  

On 3/13/2021 at 7:05 AM, RecipeForDisaster said:

I’m working with a case manager and it’s helping! She’s from my insurance. She fights for me... getting orders, making doctors and pharmacies do what they’re supposed to, getting authorization. I wish I got her involved much earlier!

 

If I remember right, you’re seeing people in Boston? Feel free to PM me about that. 

How does that work?  Do you call your health insurance company and ask for a case worker?  Then what?  If I am really sick and can't get my neuro to see me does the case worker help?

29 minutes ago, Pistol said:

Do you have anyone who can go to appointments with you, a friend or family member? It is always best to have someone who can jump in when you don;t remember what to say. Also - before every appointment I make a list of symptoms and questions. I keep a note book and throughout the day if a question comes up I write it down. I have a page for every specialist. When the appointment comes I just tear out the page and take it with me. That is the only way I can remember all the things I need to talk about!

Identifying to a new nurse practitioner that I've never seen before maybe she will have some for you to say. It scares me though I've never actually seen the neurologist. And if he has at least two nurse practitioners working under him how thorough can he be overseeing their cases? I'm just desperate.. I think I might try to see a electrophysiology cardiologist I don't know if they can help or not

26 minutes ago, Pistol said:

@E pots - there are so many treatments and drugs you have not tried yet, and most of us need a combination of drugs, rather than just one pill. Don;t be discouraged - now that they found your bP to run high it opens up a whole new avenue of treatment approach! Most of us had to go through a period of years of trying different meds before we found the right combo. Treating POTS is hard, and frustrating to both patient and physician. Just hang in there and keep going back to the doc until you find relief. 

I am so wiped out I've got no energy to keep trying. How did I go from functioning sort of okay 2 completely non-functional we're all I can do is go to the bathroom drink take my meds and try to exercise for 5 minutes but I'm so shaky nauseous and unsteady for two months now. You're so afraid this is going to stay like this or will it go back to the way I was most likely?

On 3/12/2021 at 6:22 PM, MTRJ75 said:

This is a rant post. No need to reply. 

Had a very bad physical day yesterday. My worst in a while. The good news is that I've been able to gently nudge the neuro in a direction I've been wanting to go with medications for awhile since nothing else we've done has worked to this point. Lots of physical cramping last night, but I was able to sleep eventually without excessively medicating myself. Minor victory. 

Woke up feeling tolerable today, which is as good as it gets. I spent 10 minutes outside with the dog on a nice day and now I can barely hold myself up to type. 

EVERY SINGLE TIME I feel like I can do something very minor and physically normal, I nearly end up in the ER. EVERY SINGLE TIME! 

I'm at the point (not even getting to anymore...AT the point) where I'm so sick of being stuck on this couch that either I'm going to overcome some of these challenges soon or this condition is going to have to kill me trying. 

There are things that need to be done and nobody else is going to do them. I'm depending on my mother (now entering her late 70s) for most of my needs including food preparation. There's a life outside the solitude of this couch that needs to be lived. 

Oh, and the insurance is denying Ivabradine and Clarinex prescriptions. That's another fight I'm going to have to store up energy for. 

Yet, with all of this, I can't even convince disability that I can't function normally. Second hearing scheduled for next month where they're going to call in a "medical expert" that very likely knows nothing about dysautonomia and I'll probably react in a way that will be detrimental to my case due to the frustration. Expert just doesn't mean what it used to anymore. Now days, anyone with an opinion is an "expert". 

What would happen if I just decided to keep pushing and refused to let this disease keep me on my back? I've never actually passed out yet. If I can no longer stand, I'll collapse on the floor and then get back up. My hands and arms are in agony just typing this. But what if I just choose to ignore it all and do until my body just stops doing? What's the worst that happens? My heart decides to stop and then nobody has to hear me complain anymore? 

That's it. End of rant. Feel free to add your own, ignore or respond with the secret cure to all ills. 

Ditto

39 minutes ago, Pistol said:

Hello @E pots - a case manager at a hospital or insurance company ( here in the US ) is a person thats familiar with your specific case. They usually ask a lot of questions about your situation, diagnoses etc, and then advise you what the ( hospital, insurance etc ) can do for you. An insurance case worker will be a liaison between you and the insurance. 

I got denied for long term disability through my private insurance. My caseworker documented only things that were negative to my case. Now with SSDI the case workers the same I would assume. How do I get a caseworker? Do I call my medical insurance company?

17 minutes ago, Pistol said:

@E pots - there are so many treatments and drugs you have not tried yet, and most of us need a combination of drugs, rather than just one pill. Don;t be discouraged - now that they found your bP to run high it opens up a whole new avenue of treatment approach! Most of us had to go through a period of years of trying different meds before we found the right combo. Treating POTS is hard, and frustrating to both patient and physician. Just hang in there and keep going back to the doc until you find relief. 

I'm a little concerned. I've never seen the neurologist because I couldn't get in to see him for a year. I saw the nurse practitioner. Now I can't get an appointment with a neurologist if I want to keep my appointment with the nurse practitioner. But the nurse practitioner seems to think that I'm fine and I I'm so sick but I think I don't do a good job of explaining to him perhaps I was too hopeful that I would get better and I elaborated on all the things I could do even though I felt like I was dying. When I left last time I felt awful that was 8 weeks ago I feel like I've been blown off

1 minute ago, MomtoGiuliana said:

Sorry you are feeling badly.  Is this an evaluation for disability--or do you mean you are seeing a dr for diagnosis.  Are you seeing a specialist in autonomic dysfunction?  Have you been diagnosed?

In my experience w doctors it can help to have someone with you who can back you up--say they have observed you feeling poorly, this is not normal for you, etc.  It can help to have a log of symptoms, or anyway symptoms written down so you make sure you provide all information to the dr.  

If the doctor does feel your diagnosis is psychiatric they should refer you to an appropriate physician for diagnosis.  Hopefully misdiagnosis of POTS for depression/anxiety is not as common as it was 20 and more years ago

I when this all started I went to the emergency room. They diagnosed me as having panic and anxiety disorder and referred me to a Cardiologist who referred me to a psychiatrist and a general practitioner. I had a tilt table test and did test positive for pots. But having this on my record seems to be bad. So I am going for a psychological evaluation for Social Security disability.

29 minutes ago, cmep37 said:

 

I do get where you are coming from - I'm 5 foot 10 and weigh 138 pounds on a good day -- over the last 17 years of POTS I've lost about 30 pounds and I really, really have to work at keeping weight on.  I lost 5 pounds with Covid and only managed to put 3 back on again and even that was a huge struggle.  I vomit about 5 days out of 7 as I retch until I'm sick when my HR rises quickly enough to stimulate my vagus nerve.  As standing for more than 5 minutes or walking more than about 500m makes my HR double you can see the problem!  The only thing the doctors have been able to do for me is give me Zofran/Ondansetron which gives me a couple of extra minutes before I start to gag.  It is so embarrassing when I'm out of the house/with people I don't know well as I can't move very quickly and it is impossible to hide that I'm throwing up....  

Are you on any meds or are you trying to manage solely with increased fluids and compression?  It definitely sounds like you might benefit from trying a BB or fludrocortisone or midodrine.  I've been on all 3 plus ivabradine without success but I know I'm very unlucky and that most people find something that helps control their HR.

On 3/12/2021 at 8:35 PM, Pistol said:

@MTRJ75 when I first became ill I pushed through all of the ( very obvious ) symptoms and ended up fainting all of the time at work and then , when that did not stop me, started taking seizures. All of these caused by HPOTS. At the time I fought like heck to remain able to work and tried power through these episodes, my HR and BP through the roof most of the time. Doing this definitely worsened POTS for me. But don;t worry - your heart will not top beating!--- I can really relate to how you feel, I have been there many times. And having to fight with insurance and SSDI at the same time that you are trying to just sum up enough energy to stand up and go to the bathroom just feels like you get pushed over the edge. The exact same thing happened to me. But know this: eventually things do get better. I am happy to hear that your doc is willing to try new meds with you. POTS meds often do not get approved b/c there are no FDA approved drugs for POTS. If needed talk to a case manager at your insurance - they often can help with these issues. And in the end it is up to your doctor's ability to document that decides whether or not a drug gets approved. And regarding SSDI: most of us have to fight all the way to the hearing with the ALJ. But once you get to talk to human and let them hear and see what it's like for you most of us get a[roved for SSDI. The problem is that POTS is so misunderstood and little known. 

Hang in there, and don't push yourself!!! We don;t die from POTS but we can make things worse. 

What is caseworker? I am applying for SSDI and there is a caseworker but is she really on my side?

I was diagnosed less than two years ago. Initially exercise is the only thing that made me feel better but it was a very short-lived bit of relief. But I can do intense things. Now two years later I'm so much weaker I'm in a flare my brain is foggy I have diarrhea I don't think my doctors are taking me seriously because of how fit  I look but I'm wasting away my muscle is going away everything is cramping. I can walk but I am constantly dizzy weak off-balance and my brain does not work at all I'm so nauseous

What do I tell the psychologist tomorrow and what is he going to ask me?

On 3/21/2021 at 3:15 PM, MTRJ75 said:

After speaking to my lawyer, it turns out I don't have to really worry about this because he's found out that the medical expert is a MENTAL health expert. It seems like the judge is unwilling to grant physical disability and wants to treat the dysautonomia as a potential mental disability. If I continue to try and push the physical aspect of the disability, I likely won't get anything. Perhaps my best shot is to say "Yes, I have anxiety when my heart rate is sitting at 200 with skipped beats at rest and yes, it's extremely depressing being trapped on the couch all day." 

What was the result?