What's Next? Not sure what to do anymore

[Abe]

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.

[MomtoGiuliana]

Was this the topic?

https://www.dinet.org/forums/topic/32130-pots-antibodies-and-immunosupressant-drugs/?tab=comments#comment-288747

So sorry you are so unwell.

Is it possible you had COVID?  

In any case, I have had flare ups that sound really similar to what you are describing.  My last flare up I had severe headaches, burning nerve pain all over my body, muscle pain, severe fatigue and weakness, it just felt like everything was going wrong (other symptoms too that were never explained).  I had so many tests and everything, everything, looked great.  After 6 weeks the symptoms lifted.  To this day I question was that all "just POTS" or is there more to it?  I have no answers.  Relieved it finally went away.  But I worry another flare up will return and I have few answers.  I do find that IV fluids help and my dr has been great with ordering that when I have flare ups.

[MTRJ75]

17 hours ago, Abe said:

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.

I'm not sure I have any answers except to try and handle the mental part of it as well as you can, even if it means unloading from time to time, but I certainly empathize with you. I feel like I could have written 90% of this post on any given day. 

[Abe]

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.

[Rexie]

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! 

[Abe]

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

[Chiara]

I think the person you are looking for was pistol in this post. She wrote about her expiriences with covid and hydroxychloroquine. 

Hope your pd will support you, as best as he/she can. All the best for you.