1. < Post-COVID Recovery & COVID-19

Anyone out there on Guanfacine?

Posted by summerof42 @summerof42, Jun 17, 2023

Went to Mayo Clinic to get answers. Internal MD I saw said I have long term Covid. I had a mild case in Nov '21, but a few weeks later the nightmare began. With each and every passing month, new terrible symptoms appear. As of today, I am in such agonizing pain throughout my entire body. It's a combo of stabbing-like pain and burning pain. Every morning I awaken to trembling in my chest and then the pain kicks in. I can only sleep (if at all for 3-4 hrs. Tried everything.

My immune system is attacking itself. I even developed a chalazion on lower eyelid, formed and abscess, 2 surgeries, came back again, and dry eye issues now. I also have ear pain and buzzing. I never had eye issues or anything prior and was so very healthy, like all of us.

Covid has taken the life I once knew away.

The Doc I saw prescribed Guanfacine. He said, Covid causes inflammation everywhere to include the brain and puts us in "flight or fight mode."

The BIGGEST problem I'm having is I have tried for weeks to get a hold of the Doctor I with a question on the Rx. I sent several messages through Mayo mychart, called again and again (9 times) to please have him call me and he will not and just deserted me.

I was told by his assistants he's "too busy." I can't believe a human being, especially a Doctor I drove 4.5 hrs to see and spend $$$$ doesn't have the decency to care enough and call me.

I don't know where to turn and can't stop crying in pain and mysery.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

froggiiii | @froggiiii | Dec 30, 2023
In reply to @summerof42 "Hello to all our dear members. As I continue to worsen after 3yrs of dealing with..." + (show)
@summerof42

Hello to all our dear members. As I continue to worsen after 3yrs of dealing with Covid twice ('20 and '21) and currently VERY ill and in indescribable and unbearable pain throughout my whole body.
Horrific symptoms of the nervous system (24/7 fight or flight+) fear, trembling, down now to 90 lbs and practically unable to function, but try to remain strong; albeit, not sure I can on like this and so very frightened w/no help with any doctor. Even my PCP just dropped me because I went to see a DO for another opinion. I also need surgery for my Inguinal groin hernia, which in itself is painful, but unable to proceed due to my current state. I can't stop crying and just want to jump out of my skin due to the terrible sensations, burning, tingling and pain, I know most can relate.

I wanted to try and create this topic. Please excuse any typos given my current state of health.

For the folks using Guanfacine and/or Naltrexone, are you having any success?

Hugs to all. I want to thank everyone from the bottom my heart for all your love and support.

Jump to this post

Here in Northeast Illinois I have access to a Pain Management clinic, part of a large hospital group. (North Shore). I have had two Stellate Ganglion Nerve Blocks months apart and they have significantly reduced the overall sensations. Not a cure, but has helped a lot. A daily Protein drink, like Ensure or Boost, would also provide some nutrients. Long CIVID is an ongoing nightmare for so many.

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1 reply
pat814 | @pat814 | Dec 30, 2023
In reply to @summerof42 "@austinshorty -sent you a private message. To all-what is LDN? is that Naltrexone? I get confused..." + (show)
@summerof42

@austinshorty -sent you a private message.

To all-what is LDN? is that Naltrexone? I get confused between all the three, i.e., Naltrexone, Guanfacine and NAC that folks are using and Docs prescribing. From what I gather on this forum, NAC is a supplement you buy OTC, correct?

Jump to this post

Yes, NAC is a supplement. I get it at the office of my integrative medicine doc.

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trevors | @trevors | Jan 25 9:43am

I have been taking Guanfacine (2mg, extended release, at bedtime) for over a year now, and for me it has made a *huge* difference in the cognitive issues (brain fog, lethargy, etc). I took my first dose on Christmas Eve 2022, and I woke up to the best Christmas present ever -- for the first time in more than two years I actually wanted to get out of bed and engage in the day. Prior to that I would take 70mg Vyvanse when I woke up, and then sit in bed waiting for it to kick in so I could drag myself out of bed. I have since decreased the Vyvanse to 40mg and still want to get out of bed (well, at least most mornings).

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1 reply
repl | @repl | Jan 27 10:00am
In reply to @summerof42 "My biggest and most horrible symptom is the ANXIETY & DEPRESSION. Has anyone found medication that..." + (show)
@summerof42

My biggest and most horrible symptom is the ANXIETY & DEPRESSION. Has anyone found medication that has helped.? Because Covid affects our nervous system, it's the worst! I tried Zoloft, then Escitalopram and remember waking up one morning feeling like my fabulous self again. It was the best feeling ever. No strange feeling in my arms or under the skin, no anxiety and actually went into work. Unfortunately, that was short lived. A couple of week later I started to get nerve pain in my upper thighs, had to go for terrible spinal tap. All turned out fine, but then newer symptoms set in. 3 yrs later, I am so much worse and barely functional.

The fast pulse and feeling like your heart is jumping out of your chest (like now as I type) is terrible and feeling all shaky, but also for me the extreme 'fight or flight' feeling 24/7. I can't sleep or even try to rest of take a nap. The minute I do, my body is jolted - like if you were dreaming and falling off a cliff and it jolted you up from rest. I know I need the appropriate medication, but docs don't know what to prescribe.

If only when I had Covid the doc gave me medication they typically use and/or monocolonal antibodies, but it wouldn't give me anything to stop this beast of a virus from invading my body and here i am today.

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What you described about fight or flight for 24/7 I totally relate to! For months straight my heart and body was just racing and “on”. I did acupuncture, tried herbs, meditation, and nothing was helping…
I was on verapamil for the heart palpitations cause I was throwing PVC’s every 10 seconds and didn’t want beta blockers.

I found I had to rest, like a lot! I was bed and couch bound all day. Finally after 4 months it started to lessen. But then other symptoms started of extreme weakness in my body, extreme weight gain (37 pounds), aching, dizziness, brain fog, feeling like I had the flu that just wouldn’t go away.
My life as I knew it ended without warning and within a days time. One minute I was folding laundry and the next I was having never had before heart racing and palpitations that devolved into full body disability…

When I said ‘rest’ that didn’t mean sleep, that meant trying to keep my body calm. I would tell my husband I prayed for sleep. I just wanted a good night’s sleep. It didn’t come for a year.

I took Paxlovid when Covid hit me again 8 months into these symptoms. My son brought it home and I was worried. My doctor prescribed me Paxlovid at the very beginning of feeling slightly off, I took it the first day and the next day my heart palpitations were better!! Despite my coming down with Covid again. I felt better than I had all year for the first 3 days, then I got a little bit sick but not bad. But I only had 5 days of the Paxlovid and 7 days of symptoms.

I seemed to be better for 7 days then got really bad rebound. I begged my doctor to give me more paxlovid after sending him some research showing rebound was possibly due to insufficient drug exposure and the viral load hadn’t been completely cleared from the first round.

I was super sick and I think that if I would have been prescribed 10 days instead of 5, I wouldn’t have been sick again.
As well as I really wanted to try Paxlovid more. I had a glimpse that it could really help me!

I’ve stayed on Paxlovid for months now and it does really help! I take a half dose as a full dose messes with my gut.

Maybe antivirals are the answer

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cindisue | @cindisue | Jan 28 8:41am

I would try calling again and a nurse should be able to answer your question about the RX. Or possibly a pharmacist at your local pharmacy..... pharmacists are very knowledgeable about medications. Good Luck.... I pray for you. 🙏❤

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emo | @emo | Jan 28 9:18am
In reply to @trevors "I have been taking Guanfacine (2mg, extended release, at bedtime) for over a year now, and..." + (show)
@trevors

I have been taking Guanfacine (2mg, extended release, at bedtime) for over a year now, and for me it has made a *huge* difference in the cognitive issues (brain fog, lethargy, etc). I took my first dose on Christmas Eve 2022, and I woke up to the best Christmas present ever -- for the first time in more than two years I actually wanted to get out of bed and engage in the day. Prior to that I would take 70mg Vyvanse when I woke up, and then sit in bed waiting for it to kick in so I could drag myself out of bed. I have since decreased the Vyvanse to 40mg and still want to get out of bed (well, at least most mornings).

Jump to this post

That’s amazing. Thank you for sharing your experience. It’s something I’ve considered. I have a consultation with a new-to-my-clinic PA, who’s supposedly “very passionate” about long covid and I planned to ask her about it.

If you don’t mind sharing, have you experienced any side effects and did you need to titrate your dose?

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1 reply
trevors | @trevors | Jan 28 9:26am
In reply to @emo "That’s amazing. Thank you for sharing your experience. It’s something I’ve considered. I have a consultation..." + (show)
@emo

That’s amazing. Thank you for sharing your experience. It’s something I’ve considered. I have a consultation with a new-to-my-clinic PA, who’s supposedly “very passionate” about long covid and I planned to ask her about it.

If you don’t mind sharing, have you experienced any side effects and did you need to titrate your dose?

Jump to this post

The only side effect I’ve noticed is reduced blood pressure, which is a good thing for me. I was able to lower the dose on one of my blood pressure medications. It’s possible that it has caused some dizziness, but I’ve been dizzy with long Covid for years, so I can’t say for sure if the Guanfacine made any difference to that.

For the dosage I started at 1mg/day, and after a few weeks went to 2mg.

REPLY
bettew | @bettew | Jan 29 1:01pm
In reply to @froggiiii "Here in Northeast Illinois I have access to a Pain Management clinic, part of a large..." + (show)
@froggiiii

Here in Northeast Illinois I have access to a Pain Management clinic, part of a large hospital group. (North Shore). I have had two Stellate Ganglion Nerve Blocks months apart and they have significantly reduced the overall sensations. Not a cure, but has helped a lot. A daily Protein drink, like Ensure or Boost, would also provide some nutrients. Long CIVID is an ongoing nightmare for so many.

Jump to this post

tell me more about the stellate ganglion blocks- is it painful or dangerous? I have read good things about how it helps long covid... seriously considering it

REPLY
1 reply
froggiiii | @froggiiii | Jan 29 1:11pm
In reply to @bettew "tell me more about the stellate ganglion blocks- is it painful or dangerous? I have read..." + (show)
@bettew

tell me more about the stellate ganglion blocks- is it painful or dangerous? I have read good things about how it helps long covid... seriously considering it

Jump to this post

Lots of information available online. SGNB has been used for quite a while for a variety of conditions. Low/no risk, Numbing pre injection similar to dental novacaine, otherwise no pain. 15 min outpatient procedure done in a sterile mini surgical space. Blood thinning meds need to be stopped a couple days pre procedure.

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1 reply
bettew | @bettew | Jan 29 1:24pm
In reply to @froggiiii "Lots of information available online. SGNB has been used for quite a while for a variety..." + (show)
@froggiiii

Lots of information available online. SGNB has been used for quite a while for a variety of conditions. Low/no risk, Numbing pre injection similar to dental novacaine, otherwise no pain. 15 min outpatient procedure done in a sterile mini surgical space. Blood thinning meds need to be stopped a couple days pre procedure.

Jump to this post

What symptoms did it help with; and will you be going back for it again?
Thank you for your feedback!

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