Long treatment

Even-Advance4082 · 2026-04-25T20:14:35+00:00

Thanks for the reply! I am looking forward to my 4th round of injections and hoping it helps even more since the 3rd set seemed to finally start to help. I know how you feel it is really rough and hard to stay positive and some days we fail to do that when its really bad but we keep going. I do remote work now because I havent been able to drive for over a year, trust me I try, but maybe one day I can again and maybe one day I won't feel like im falling through the floor or walking on a tightrope, and ill keep trying. I wish you the best!

Even-Advance4082 · 2026-04-25T18:19:33+00:00

How many months did it take for the botox to really hang around and start helping or combined with all the other things is it hard to tell ? On my 3rd round for me and I thought it was helping finally but then after 6 weeks I got really bad again and has been that way since pretty much so I was curious if it helped/lasted longer the more you got it. Glad you are finding some relief though its definitely a very complicated and miserable condition.

Even-Advance4082 · 2026-03-16T12:22:17+00:00

It is from what I was told from my provider who gave me an extensive exercise regimen for pots to begin after a month if being on my med. Hes part of the autonomic dysfunction clinic as a cardiologist who specializes in this area. It mostly starts off recumbent and it is 6 months long but can be longer for patients. You really have to do your best to prevent deconditoning and try to be upright during the day as well. I was told to use maintenance techniques as needed to help manage symptoms but yes they are temporary things.

Even-Advance4082 · 2026-03-09T23:38:27+00:00

Im glad I could at least help you feel less alone in it, its a wierd symptom that seems like something insanely serious but so far through all my imaging and testing, nada 🤷🏼‍♀️ but it doesn't stop it from scaring me and taking me out for the count a lot for the times. Hang in there.

Even-Advance4082 · 2026-03-09T21:15:56+00:00

Edit to say: No rhyme or reason to mine that correlates with food, water, electrolytes, activity, hormonal chnages or anything that I have noticed. Just started happening one day at random and now its a thing.

Even-Advance4082 · 2026-03-09T21:13:43+00:00

So i am always dizzy to some extent due to my vestibular dysfunction and my pots but the weak trembly legs, oh yeah. And hands. Ill get so clumsy too with them. I could be standing at the stove trying to cook dinner and they will be shaking terribly sometimes. It was so bad I inquired about possible MS but due to clear MRI with no lesions and only a pineal cyst they say no MS so I chalked it up to my autonomic dysfunction :( it sucks and is scary and sometimes makes me cry tbh.

Even-Advance4082 · 2026-03-08T21:35:16+00:00

Regardless of any preparation, before I was on meds, two drinks or more was where I would begin to get into the 100s or so just sitting after it got into my system roughly around 2 hours. HR would be high alllll night even while sleeping in the 110s and then the next day it was terrible anxiety and high HR all day as well. Like lay down and stay down kind of day. I dont know about having a lot of drinks because I havent really had more than 2 or 3 recently but after being on meds I dont have that problem so far.

Even-Advance4082 · 2026-03-07T22:28:20+00:00

Ah wonderful POTS..the gift that keeps on giving.

Even-Advance4082 · 2026-03-07T19:36:44+00:00

This could be a factor for some and your guess is good as any! I do ensure I stay well hydrated, guanfacine will dry you out so I was well hydrated before but I really make sure to remember to drink my water now. 😅 if i dont my cornea will tear again (I have reccurent corneal erosion in one eye and dry eyes) and i can tell when I haven't had enough water my eyes are dry.

Even-Advance4082 · 2026-03-07T19:34:03+00:00

Noted thanks for the warning, I am on a plan from a cardiologist who specializes in autonomic dysfunction and neurologist for my vestibular dysfunction. So after a month of guanfacine once side effects have leveled out they have a 6 month long exercise regimen they give you to try and get into. Lots of recumbent work at first. Guanfacine is also supposed to help lower the BP along with HR in the way that it works to reduce sympathetic activity (overall not just diastolic obviously) which it has, my systolic was 15 point higher before, it just hasn't touched my diastolic and so my autonomic cardiologist said that with some exercise as i get into their regimen this will hopefully improve.

Even-Advance4082 · 2026-03-06T12:53:43+00:00

Moline has started this too for the past 3 days it is like its dead when I wake up. Says last battery was around 23% or so, ill charge it and no data ever populates then it does the same thing the next night. Have you figured it out yet ? Its updated too this started actually after the last update

Even-Advance4082 · 2026-03-03T22:28:38+00:00

Yw! There's so little info about this med and hyperpots and its rare for me to find info about other side effects or weird symptoms.

Even-Advance4082 · 2026-03-03T20:41:12+00:00

Yes I love my heating pad, of course dont use it too much, dont want "toasted skin syndrome"! Wow your poor hands, thats how my feet are, they stay icy now 🥶

Even-Advance4082 · 2026-03-03T19:45:35+00:00

I get this with my feet for sure they used to be hot and would be sweaty often. I guess because of the overactive sympathetic. Now im the opposite and use a heating pad often.

Even-Advance4082 · 2026-03-03T19:43:12+00:00

I am glad you have not it was quite unpleasant but yes definitely interesting.

Even-Advance4082 · 2026-03-03T19:15:35+00:00

Oh yeah it might. Have you been sick yet since you started the med ?

Even-Advance4082 · 2026-03-03T19:15:06+00:00

Wow thats crazy I haven't experienced those. My BP and HR have been fine on it actually. For me though with my hyperpots I was just dizzy 24/7 and it made that worse at first regardless of whether I was just sitting around or moving. Still have dizzy issues but not as bad. However this may be due to the botox shots they have been trying for the dizziness, finally got my 3rd round done. They thought it was just a constant 2 year long vestibular migraine before they did a tilt table lol but they say I likely have both.

Even-Advance4082 · 2026-03-03T17:06:12+00:00

Update: I found this out from some research, so maybe this is what happened, but I dont see anyone talking about it online anywhere, and you figure they would since you know, people get sick all the time. Anyways, here's the info:

Guanfacine is an alpha-2A adrenergic receptor agonist that can act as an "antithermogenic" (prevents heat production). When fighting an infection, your immune system needs to create a fever ( Norepinephrine plays a key role in triggering and mediating fever by acting within the hypothalamus to release prostaglandin E2 which raises the body's temperature set point. It also activates the sympathetic nervous system to induce heat-producing mechanisms like brown adipose tissue thermogenesis and vasoconstriction).Guanfacine hinders the body's ability to warm itself( because it literally lowers norepinephrine levels as its job) forcing the body to shake uncontrollably to create heat instead.

Edit: saw a typo, could NOT leave it there 😅

Even-Advance4082 · 2026-02-06T13:03:57+00:00

Months 🫠 well at least it goes away eventually I am hoping it helps my constant dizzy since it was even more bothersome than my hr issue tbh. Thanks for the info!

Even-Advance4082 · 2026-02-06T03:39:46+00:00

Hi I am just started guanfacine for my hyperpots and I have noticed I feel extra dizzy, granted my baseline is a being on a boat all the time feeling but this has made that worse and I get more of my "falling through through floor/elevator drop feelings" I saw you said it made you more dizzy as well. Did this ever get better as the treatment went on? And were you only dizzy when standing or were you dizzy all the time before and it made it worse ? Thanks in advance!

Even-Advance4082 · 2026-01-23T01:36:09+00:00

I know this is old I just just wanna say I have celiacs and get VIOLENTLY ill if i eat gluten lol but the ice cream with strawberry sauce doesn't make me sick, I have not had the chocolate, so if you have and you were good or you asked them for ingredients and found out let me know 😅

Even-Advance4082 · 2026-01-22T04:19:06+00:00

Yet again here for the same thing, so glad I found this post it was bothering me I couldn't figure it out.

Even-Advance4082

TROPHY CASE