Abe

14 hours ago, Pistol said:

dear @Abe - my husband and I both had COVID in September. I was very ill and developed pneumonia from it and spent 5 days in the hospital. My husband also had some complications but was able to stay home. Once we both recovered our oxygen levels stayed low, around 92-95 %, and we had some shortness of breath with exercise. We were told that is completely normal for the recovery period from COVID. 

It is also expected to go into a flare after a viral illness, so bear with your body. You have a lot of stressful events to recover from, so give it time. The muscle spasms can simply be a sign of all of the stress and anxiety you are dealing with. What helps me when I get them is half a muscle relaxer, I have a prescription for Flexeril. 

As far as I know most people that recover from COVID have - at least for a while - a natural immunity due to the antibodies. They are responsible for your recovery, so you can ask to get tested for antibodies. That way you can rest assured that you are protected for now and can at least stop worrying about getting COVID anytime soon. 

Be patient with yourself, it takes time to deal with everything that has happened to you this year. Best wishes!

Thank you so much @Pistol  What a wonderful lives we all live! At least, we have each other to lean on in times like these.  I have been literally scared to death about going to sleep the last three days thinking I might die in my sleep.  Woke up this morning and had a big panic attack.  Still suffering from the Adrenalin surge.  As you said, I am going to try and be patient with my body.  Just too difficult to do when so many things are happening in your body at once and you have not a single control of none of it.

I have been struggling all year.  Lets just say it has been a terrible year.  I was hospitalized for 3 days in May with high blood pressure and found out the first night that I tested positive for Covid.  The doctors were not sure if it was the Covid that spiked my blood pressure but got out of the hospital with a prescription for Metoprolol and Diltiazem in addition to the Lorazepam that I was currently on.  I lost my father in August and my adopted grandma couple of weeks ago.  I don't normally go anywhere but I had to be at my grandma's funeral last Tuesday.  I had my mask on for the majority of the time except when I needed to drink water.  Since then, not sure if it was the stress of the whole day or just still in a flare, or maybe my anxiety, my muscle tightness has gotten worse and doesn't seemed to respond to Lorazepam anymore.  I am not sleeping The worst part of it is my oxygen level that keeps fluctuating between 90 and 99.  I am a little worried that it might be this stupid covid thing again.  Not sure if I should go to the ER just to be careful.  I haven't been sleeping even worse than normal.  I monitored my temp and its always normal (97.6 and 98.4) so I am thinking its not covid but what do I know?.  Please any suggestion will be appreciated.  I have been freaking out for 3-4 days in a row.

On 9/10/2021 at 11:55 AM, Rexie said:

With little relief from many prescribed meds, my answer to prayer 4 or 5 years ago was the herb ashwagandha (Withania somnifera; 660 mg pressed root capsules four times a day), sometimes with added Passion flower (Passiflora species, 350 mg powder capsule). They both help increase GABA levels and serve to balance the nervous system against overstimulation that leads to horrid symptoms like you describe. I try to stay as physically comfortable as possible (appropriate clothing for the weather and not too tight; sunglasses outside; meditation or quiet time as needed, less mental and job stress when possible, etc.). A few weeks ago I added the herb slippery elm (one cap at bedtime, 400 mg powder) which helps quiet and soothe digestion and is a wonderful addition to my herbal program - I am able to eat and eliminate normally again.  Using this program has lessened symptoms for me by about 90%; return of symptoms usually occurs when I've over done it physically or had a really busy or stressful day. Then I just stop all movement, sit quietly in low light, and wait for my ashwagandha to kick in (starts working in 5-10 minutes, normalized in 20-60 minutes and I'm "back" and good to go again). If I'm really whacked, I'll drink a cup of Chamomile tea with both the ashwagandha and passion flower. All three herbs have a very safe profile and all my labs and tests are good and/or improved. Some months back my doc did prescribe 25 mg tramadol once in the morning and once in the evening - another big help in pain management.  

Abe, I hope you find what you need to live more fully without so much misery! 

Thank you so much @Rexie

Thanks so much to both of you. I'm trying daily to hold it together but I just feels like, I am about to break and I am praying to God to help me because, me breaking down right now won't be good for my family.  This is not a fun ride whatsoever.

I have been in this downward spiral since the beginning of the year.  Not sure if this a POTS flare anymore.  Everything is ten times worse than usual.  Digestion got worse.  Sight got far worse.  Can't hold my neck on my own.  There is so much pressure or tension in the muscles (if that's correct) around my eyes.  It gets worse as soon as I stand up or walk around.  Bodily pain that I cannot even explain.  Worse part is that I don't feel like a human being. My body burns constantly.  24/7 muscle spasms. Barely gets to sleep.  Anxiety is off the roof.  Its like something crawling all around under my skin.  It all just feels like living under the shadows of death.  Medications rarely work.  Don't know what to do to get out of this.  Just at my wits end.  Someone said on this forum few weeks back that she had some tests done and it was discovered that she had systemic inflammation, was prescribed Hydroxy-chloroquine and she was able to get her medications under control.  I was going to run that by my doctor but couldn't find the post anymore.  I am pretty used to hydroxychloroquine in Africa and have taken it thousands of times for Malaria, so not too worried about side effects.  I am just ready to try anything to get some relief.  Sorry for rambling too much.  I am just too tired, irritated and frustrated.  Any advice will be greatly appreciated.

On 9/22/2019 at 4:48 AM, Pistol said:

I have a very bad flare right now for the past month and the only thing that is different is that I have allergies. I started Claritin and my POTS is better but still worse than usual. In my case I believe it is because histamine causes vasodilation and my BP is much lower than usual. But it fluctuates really fast , I.e. 140/90 then 80/50, that is when I faint or feel like fainting. As I said, the Claritin gave some relief but it is still bad. Looking back I had a flare every fall and spring for the past 10 years.

Praying for you @Pistol.  You've been a great channel of encouragement to many of us here.

I read something about the Roemheld Syndrome few years back at it seemed to sync with me.  I get instant stomach discomfort and tachy after I eat, no matter how small.  The explanation I got was that if your digestive system produces too much gas/pressure after food, it pushes your diaphragm up against your heart with then tends to trigger some sort of panic attack and then a tachycardia.  Every food I eat causes an adrenaline rush and in my case, it feels like life is being squeezed out of me.  Studying through all these this past weekend, I also learnt that this might be caused by Small Intestinal Bacteria Overgrowth (SIBO).  Its all so confusing so I decided I am going to set an appointment with my doctor to see what he can do to get some answers.

Of all the symptoms that I have and still experienced, this is one I never thought someone else is experiencing.  It has caused me so much stress to the point that I have stopped driving.  Sometimes, the feeling is like every vehicle and objects around me are moving too fast for my eyes to focus on but then sometimes, its like I have lost control of my eyes and I can't intentionally focus on anything.  When I move my neck, I feel like I am going to pass out.  I didn't know anything about this until I watched a video on Craniocervical Instability. I guess I can assume but will want to know for sure if that is my problem.  Seriously, how many issues are we supposed to be dealing with as POTS patients?  It gets too much sometimes.

My anxiety level is pretty high (almost all the time of day) and checking my BP tends to spike it acutely too so I have held back from checking it.. I have been trying to only check my heart rate and O2 levels once or twice a day because I tend to over-do things. How I wish this flare only last for few days but they sometimes take weeks or months for me.

Thank you all so much @Pistol@cmep37@CallieAndToby22.  Really appreciate all your comments.

I am really struggling today.  Hoping someone can tell me how they get through days like this.  I feel like I am going to pass out every minute.  Walking through the house or even to the kitchen is a big burden.  Can't seemed to calm down and even though I have been here before, it all seemed new.  Scared to check my blood pressure because if its too high, it will drag me into a panic attack.  Sleeping has always been a problem.  Without the Benzo, I'm rarely able to get to sleep with the bodily pain and sensations.  Thanks.

Thank you so much @Jyoti.  I actually only had one session with the chiropractor before I ended up in the ER with what now seemed to be a POTS flare but I will try the ice pack idea.  Just got back home on Monday after a three days hospital stay.

My anxiety is pretty bad right now and my benzo did not seem to work.  My O2 level keeps failing and rising between 92 and 99.  I am freaking out thinking this maybe the COVID thing but my anxiety is high too so I am very confused.  I don't want to go back to the hospital but the other part of me said, go.  What a nightmare?

12 hours ago, merkat30 said:

I understand sorry u have go though this I deal with this daily up and downs of my bp and heartrate like rollacoaster it scary nothing has  helped so far tho this doesn't not in no way mean nothing will help u .I hope u feeling lil better mentally at least . U are strong u will get though this !! 💗 keep drinking plenty fluids and eating what u can rest pick good Netflix to watch and when u can walk around room holding walls for support to keep your legs going diconditioned. 

Thank you so much @merkat30

1 hour ago, Jyoti said:

@Abe--reaching out and sending good energies and best wishes.  It is soooo hard to be stuck inside a body that is malfunctioning so actively, like yours is right now. It is almost certain that this will calm down and you will feel better, but in the meantime, I know exactly what you mean about turning to God. Sometimes, that is the only (and best) option.  

What did the hospital say when discharging you?  Is there a follow up plan?  How long till you see someone else?  (I mean--a doctor--I know you are in quarantine!   What kind of terrible joke is this?) 

So keep breathing, slowly and deeply if you can.  Do you know the box breathing technique? Or other breathing patterns?  There are a lot of them--some work better for me than others, but it is definitively a good way to quell some of the anxiety.  Wishing you   peace--in body and mind-- and soon.

Thanks @jyoti.  I am supposed to go back in, in 5 days.  Not sure I have any strength to talk to anyone talk less of going anywhere but we'll see.  I already called my Primary Care Physician to let him know about the new prescription.  Thanks for suggesting the breathing exercise.  I did that all through my stay at the hospital and it really helped lower my blood pressure.

2 hours ago, E pots said:

So you have POTS?  Sounds like a bad flare doesn't it? I'm in one right now and my blood pressure has been a lot higher. They're trying to take me off the steroid and possibly female beta blocker

Thanks @E potsYes I have POTS and this thus seem like a bad flare but I am mostly scared because I have never seen it this bad.

I just got home from a three days hospitalization after experiencing several weeks of high blood pressure which then brings about heaviness around the eyes and blurry vision, severe tightness in my chest and stomach, and almost passing out each time.  They tried multiple things in the ER including new medication, increasing dosage of current medication but nothing seemed to work, I got like four bags of fluids before my blood pressure could stay below 170/100.  There is the symptom that feels like blood is nor reaching my brain creating brain fog and confusion.  I feel like these were normal POTS symptoms but the way its happening frightens me.  For example, on Saturday night, they were able to get the pressure down to 135/81 but it went up to 200/121 or something within a minute of standing up. I have never experienced that.  And then they did a Covid test because I was going to stay overnight and it came back positive.  That just made everything worse for me emotionally.  No symptoms whatsoever so they didn't treat me for Covid.  Luckily, one of the nurses was so supportive and helped calm my fears. Now with all these problems, I have to go quarantine myself for 2 weeks.  One thing they told me was that my GI symptoms may have worsen with the virus.  Apart from the GI issues, no symptoms at all.  My stomach is constantly spasm-ing and producing gas like nothing I have ever experienced.  Not sure where to turn or who to turn to but God.  My anxiety is through the roof.  Not even lying down is making things better.

Thanks @JyotiI was able to see a new chiropractor last week and x-rays showed my neck and spine are in bad shape.  I asked her about the device and she told me to hold off for now and see how I respond to few treatments before we come back to it,  Really appreciate you following up.

Thanks@JyotiI am going to try one out.  Will talk to my chiropractor too if she has any recommendation.  My neck is almost causing me to have a blackout.

Thanks@JyotiIs there a device you use or specific exercise that was recommended?

Thanks@Pistol.  Sorry I couldn't respond earlier.  Its been a very miserable few months and each day seems to be worse than the next. Some days, I really don't know how to handle it than just lay down and pray that I make it through.  No medication has worked for me and I am so tired of trying.  Not sure what to do anymore and I can't drive right now to take myself to go see another specialist.  Just tired.  How others go through these daily, is still a mystery to me.  No one should be suffering like this.

Thanks @Pistol.  Really appreciate taking time to comment.  I guess it's been difficult for me to accept all these and maybe its the reason why I find it too difficult to deal with sometimes.  One minute, you feel like you are okay and the next, h*** breaks loose and not just in small doses, its a full blown breakdown.  Dancing around the extreme polar ends, makes life so miserable.  Like today, I woke up okay and thinking, today is going to be better and suddenly, around 11am, it was pain and soreness at every join all day.  I just finally got up around 7pm to get some work done.

Thank you @POTSiusand @MTRJ75.  Really appreciate your responses.  The muscle tightness and aches around the head make it difficult to breathe most days and my body compensate by sniffling constantly when it gets worse.  Its like something is pressing down on my nose.  As for the neck positioning, I have had issues with my neck now for over 4 years and I used to get weekly adjustments but since my POTS flare up, I have only been able to see my chiropractor once in like 3 months.  Scared to even get behind a steering wheel right now and drive for two blocks.

Anyone experienced this severe a vision issue?  My eyes feel so heavy, painful and blurry.  It feels like they are going to fall out of the socket or go blind.  I work with computers so maybe it has to do with that but my glasses have blue light protection. I'm freaking out badly now because I don't know what I would do with my life if I go blind.  My body tension have been so bad lately to the point that its causing me some neurological symptoms.  Muscle tensions all over my head.  I can't imagine life being like this for the rest of my life.  I don't know what's causing all these.  Not sure if its POTS, anxiety or depression.  Just tired.

Feel the same here.  Today will rank as one of my worst days in 5 years and I really feel like giving up but praying that God will spare me tonight.  Everything you can think of, is going on in my body tonight and I can barely explain it but I thank God that I have a place like this to come to and offload everything I couldn't even tell my family.

The last few weeks with this phenomenon have made my life so miserable.  I don't know what to do anymore.  I am close to passing out right now than I ever was since diagnosed with POTS.  Anyone found a relief?  My medication doesn't seem to be helping.