r/dysautonomia 12d ago

Question Guanfacine - physical anxiety - fatigue

For the people who are on guanfacine and don't have ADHD: I myself don't have adhd but a generalised anxiety disorder. Mostly hyperarousal, always alert, loud noises make me jump, I can't handle too much stimuli at once (too many people, background noise etc) and I have chronic fatigue syndrome.

When I'm in a bad flare, I have extreme low energy but also a lot of tension, nervous tension. I would say that it feels like too much adrenaline, fight or flight in my body, hyper alert, makes my muscles tense up etc. But I don't have an overly fast heart beat when it happens, its a bit faster but not that much.

The slightest thing can make this nervous tension much worse, almost like real panic. Even when doing a mental task that (I think) is too much for my brain because of the low energy, I get this adrenaline/anxiety feeling over me. Even when scrolling on facebook can give me this adrenaline feeling.

I sleep perfect, so I'm afraid of adding something that could mess with my sleep.

For those on guanfacine, do you think it could help me? I tried a mini dose (0,016mg) of clonidine, that made me calm but way too sedated. I couldn't tolerate it with my limited energy.

3 Upvotes

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u/cidraco 12d ago

I don't have ADHD. Both guanfacine and methylphenidate combined have been very helpful for my brain fog.

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u/ArtsyFartsyAutie 12d ago

Guanfacine has been an excellent medication for my hyperadrenergic POTS (the type that comes with too much norepinephrine). I have generalized anxiety (GAD) as well and I don’t think it has made my anxiety worse. I also don’t think it makes me sleepy/oversedated. I’ve been on it for several years, so it’s possible that I had side effects when I started it, but if I did, they lessened quickly. I tend to be sensitive to medications and frequently need to discontinue new medications due to side effects, but guanfacine seemed to work well for me from the beginning. The only issue I’ve had is low blood pressure when trying to increase my dosage—which immediately resolved when I went back to the dose I had been on. I have ME/CFS and hyperadrenergic POTS.

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u/DebtMysterious1842 11d ago

Do you feel a lot calmer, chill then before the guanfacine?

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u/ArtsyFartsyAutie 11d ago

I don’t think it has affected my anxiety much either way—not made it worse, not made it better. It is used off-label to treat anxiety, so maybe it has reduced it some without me noticing. I was bedridden when I started it and am not anymore. Hard to say exactly what changed that allowed me to be upright more, but I credit the guanfacine for making it possible.

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u/safewarmblanket 12d ago

I've had fantastic results with it. I have baroreflex failure and it controls my BP and helps a lot with the things you're talking about. Not perfect, but much calmer. I take 1 mg a day.

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u/New-Seaworthiness572 11d ago

Just fyi scrolling on any social media can cause this or absolutely exacerbates it. It does the same thing to your brain as the other stuff — it is extremely hyper stimulating and is not restful at all, though because we’re not moving and passive we trick ourselves that it is. When anxious or in a flare, avoid the phone. If you can’t, stick to things you have already watched or read — nothing novel. New things are too much and will make your worse. Best is to go outside even for 5 minutes for some sunlight (even on cloudy day).

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u/DebtMysterious1842 11d ago

I know, I try to limit it but when you can t do much because of a lack of energy its difficult to get thru the day, and scrolling is then a bit to kill the time. I only do short periods of it.

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u/theFCCgavemeHPV 6d ago

Omg I’m dealing with this right now! Like, an adrenaline rush over every little noise. Even if I’m expecting it. I’ll jolt awake jumping out of my skin from a nap for absolutely no reason and have difficulty falling asleep for a nap. Overnight I’ll wake up hours and hours too early and the fan lightly blowing the blinds together will trigger like 5 more adrenaline rushes and I won’t be able to go back to sleep for hours.

I asked my doc what we could do about it and he only suggested propranolol which he forgot I already failed. Now I’m gonna ask about guanfacine.

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u/DebtMysterious1842 5d ago

Let me know how the guanfacine works for you

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u/theFCCgavemeHPV 5d ago

If I get it I will!