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Anyone out there on Guanfacine?
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.
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Please be careful of your math. If you really started at 0.05 and want to reduce it by 1/4 you should have ended up at 0.0125 not 0.125. Perhaps this is only a typing error. I am not trying to nit-pick your post, but to alert you to a possible confusion. We are all in this journey together, trying to achieve mutual support. I wish you well.
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1 ReactionJust curious...are you working with your pcp ? Are you in a long haul clinic etc?
Correction: My original LDN starting dose was .5, not .05. Sorry for any confusion.
Can you explain how you go about "improving the way the central nervous system/brain interprets pain signals"? How did you find someone to help with this? Is it some kind of meditation?
Hi, I started LDN in March, started at .25 and am now at 1.25, working my way up slowly. I did try the Guanfacine (last month) but it made me really sleepy even at a small dose so I'm just sticking with the LDN. That, plus PT for pain, along with change in diet (lost 22 lbs) and nutritional supplements (mainly vitamins) has helped me a lot. I also use 2 devices to help my nervous system - the Alpha-Stim and the TruVaga. These have helped a lot with anxiety and overall calming down my system. Alpha-Stim uses brainwave technology and TruVaga is a Vagal Nerve Stimulator.
All these except the PT are through a functional medicine Doctor. My PCP referred me to my local LC Clinic a couple of months ago but I have yet to hear from them.
I hope some of what I've said here is helpful! I was in severe GI pain and had terrible anxiety/PTSD type effects, awful brain fog, very bad fatigue a few months ago. I feel about 80-85% better most days now.
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2 Reactions@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?
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1 ReactionLDN = Low Dose Naltrexone
It is naltrexone, but it's a tiny fraction of the typical dose. It has to be obtained by prescription from a compounding pharmacy because it's not manufactured in such small doses. LDN is used off-label for many chronic pain conditions, and now it's being extrapolated to be applied to long COVID.
Guanfacine is also a prescription medication, historically used for ADHD, used in some cases off label for TBI to improve brain fog and cognitive function. It's being researched for application in long COVID.
NAC (N-Acetyl Cystein) is an OTC oral supplement. But it's also used in hospital settings by IV to treat acetaminophen poisoning.
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.
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1 ReactionLDN (naltrexone) plus methylene blue pills and B3 pills 3 times a day has helped my long COVID. Also physical therapy . Try to find a good DO or good Alternative Dr. that has kept up with things and thinks outside the box!
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2 ReactionsI have been on it for months. It is the only thing I have tried in the last 3 years that comes close to helping the brain frag.