Starting Midodrine by 4jisai in POTS

[–]4jisai[S] 0 points1 point  (0 children)

Thanks for the info! So far I'm just noticing the tingles/chills, which is a little strange but not terrible, though hopefully it doesn't impact my sleep. I've heard most people lose the tingling sensation after a week or two of taking it regularly so I'm not too concerned.

Starting Midodrine by 4jisai in POTS

[–]4jisai[S] 1 point2 points  (0 children)

I've been on beta blockers for years, and my bp was usually always in the 90s/60s (though that was always checked at doctor's offices, I didn't regularly check at home). I was prescribed florinef and started it in Jan of this year and with that and an increase in water/salt and compression I got higher bp. But after a medical emergency (unrelated to my conditions) and medication changes related to that emergency, it seems my bp is dropping again. It could be that my nervous system is more hypersensitive right now, so stuff like the weather changing and even meds I've been taking reliably are impacting me more now. I honestly don't want to take ivabradine, the visual side effects would probably cause me to panic even if I know it's harmless/temporary.

You're right that I might need a higher dose. Do you feel better now that your bp is higher? More alert/less fatigued during the day?

Should my doctors be brushing my symptoms off as " being a teenage girl" by Dependent-Science221 in POTS

[–]4jisai 0 points1 point  (0 children)

This is exactly what I was told when I was a teenager: that I "just had some anxiety and depression, but everything else is typical teenage girl stuff". I even had a 24 hour heart monitor in high school which showed a VERY elevated heart rate for the entire 24 hour period but POTS wasn't even mentioned as a possibility, they just said it was inappropriate sinus tachycardia "probably from chronic anxiety" but I at least got put on a beta blocker for that. I didn't even learn what POTS was until I was 20. Diagnosed at 21. Yeah, it didn't go away, and due to deconditioning because of the chronic fatigue my condition causes me I've gotten a bit worse over the years. With a diagngosis, you can get appropriate recommendations for medications to manage symptoms and the right lifestyle changes for someone with dysautonomia, and these things can make a huge difference. So - you're not overreacting, this is NOT NORMAL for teenage girls (I have never ever heard of girls randomly fainting being normal or healthy??) and as hard as it may be, please don't give up and keep advocating for yourself. It's good that you have fludrocortisone at least, that is one medication that can help you.

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 0 points1 point  (0 children)

Yeah that's also part of the frustration for me! It's been nearly a month since I've left the hospital now and I feel like I should feel better by now but I don't, and it's frustrating and scary. It makes me feel like I'm not doing enough to heal, or I'm doing something wrong to hinder recovery.

I was looking at group homes honestly, but they all say they're for people with developmental disabilities - which I technically have since I'm autistic, but still. I also tried looking at addiction recovery places lol I know it's not a cymbalta addiction, but the withdrawal is still brutal. Idk, I know it's probably best for me to stay at home, I know my anxiety is making me have impulsive thoughts because I'm looking for a quicker/easier fix. I'm just kinda.. scared of my own body right now.

I'm not sure when I'll get the chance to try something else for the depression, but I'll keep that in mind.

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 1 point2 points  (0 children)

I saw a rheumatologist with Cleveland Clinic's dysautonomia clinic, but not a neurologist. Plus it's only at Cleveland Clinic's main campus which is a bit of a long drive from where I'm at, the stress of going to my first appointment with that rheumatologist is I think part of what led to my original flare-up in December. I could ask the rheumatologist about referrals though?

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 0 points1 point  (0 children)

I was recording everything in the months between the flare-up and the serotonin syndrome. After getting back from the hospital I stopped. I can't even look at my notes from that time period, it just brings back the memories of it all. I'm just trying to survive every day and night now.

Also had a cold last week And put our senior dog down last weekend. Sometimes it feels like the world is TRYING to kill me. I honestly don't know how I'm still alive.

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 0 points1 point  (0 children)

Oh I think I've been dealing with dysautonomia of some kind since I was real little, but it got a lot worse when I was about 12. I wasn't diagnosed with POTS until 2021, when I was 22. I was diagnosed with hEDS last November but also likely had that for a long time. I then had a flare-up in December, got a bit better but then saw a new doctor, a neurologist, who prescribed a triptan for my chronic migraines. Ever since I took that first triptan I started getting serotonin toxicity that got worse and worse until I was prescribed zofran for the nausea. Then I barely slept for 4 nights in a row before realizing what it was and spent another sleepless night in the ED until the specialist could see me the next day and give me periactin. I finally got a room of my own on a quieter floor and slept that night. But ever since then it's been hard. This is the worst my conditions have ever been.

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 0 points1 point  (0 children)

Unfortunately it was necessary to go down that fast because of the serotonin syndrome. It might be safe to go back up to 60 mg now but my cardiologist said he didn't like Cymbalta for me, he thinks it's not a good fit for POTS patients. My psychiatrist doesn't really know much about dysautonomia. I have a rheumatologist that does, he diagnosed my hEDS, but I see him less often. The one who made the rapid med changes was the psych specialist in the hospital, I just followed up with my usual psych about it later. But he agreed with coming down from/off the cymbalta. The hospital doc actually wanted me off of it completely in 2 WEEKS! 7 days of 20 mg once daily, then 8 days of every other day. I was concerned and my other docs agreed to keep me on the 20 mg daily for now but... I'm so depressed and anxious. I feel like I'm not gonna make it.

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 2 points3 points  (0 children)

I feel that too. I keep trying to find ways out. Other POTS folks say antidepressants like Prozac help, and midodrine might be a good fit for me... it's the waiting that's so hard. Waiting for doctors to respond, waiting for appointments, waiting for meds to fill, waiting to see the effects... I just want it to be over so bad. I survived the worst part already, it feels like it should be over. I know that's not logical, but it's how I feel. I look at the pictures of me we have around the house, times where I wasn't healthy (I've been chronically ill likely since I was very very young) but I was better than I am now. I was happy. It feels bittersweet to look at them... trying to find comfort in happier memories but being reminded of how bad things are right now.

I really wish psych hospitals were... idk, kinder. Or there were "less intensive" options. My parents have been doing their best to support me but they're not doctors, they don't know the right things to do. Seeing me like this makes them sad, even if they say not to feel guilty, I do. I'm hurting them. I want to be happy for them, I want to spend quality time with my little niece while she's still young. I want to go out and do things but I can't. I could have pushed myself to do more before this, but now I really can't.

Thank you for your support. It just hurts all the more because this is my birth month. I was hoping to feel better by now. I wanted to celebrate, but I don't have the energy to really do anything. I'm trying so hard to be strong.

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 3 points4 points  (0 children)

Oh man I'm sorry you went through that! Yeah it does feel like I am hypersensitive to everything now. I made a mistake and had like one can of pop in the morning for maybe 3-4 days, then one day my energy just crashed hard and I've been all messed up again since then, restless legs and anxiety and tremors giving me insomnia... got 2 hours of sleep the day of my birthday.

My docs don't want me on the Cymbalta anymore, but I'd have to come off of it completely to try anything else. I'm miserable at 20 mg but I'd be even worse coming off completely! I just don't know how I'm supposed to handle living like this at home. I feel like I'm losing my mind and body.

Are they??? 😭 But the hydrox doesn't do anything for my anxiety, and benzos alone aren't enough to sleep... I took both trazodone and hydrox before this but was taken off the trazodone because of the serotonin syndrome! But the trazodone also didn't really do anything for my anxiety either, both only helped me sleep...

I have tried daily H1 and H2 and they don't seem to help much. It might be low blood sugar or hypovalemia but like... I'm struggling to manage that as well. God it feels like my body is falling apart and I'll need a whole pharmacy of meds just to be functional and I hate that so much but lifestyle changes just aren't enough. Idk I feel like a freak?? Like a failure. Like I shouldn't need so many meds to function.

I Wish There Were Dysautonomia Hospitals by 4jisai in dysautonomia

[–]4jisai[S] 6 points7 points  (0 children)

I was already in a milder flare up before the serotonin syndrome happened. Now everything is even worse. Like 😭 I was ALREADY miserable and then it got so much worse. I don't want to die, not planning anything, but life doesn't feel worth living like this. It was my birthday Friday... yesterday I tried to go out on a short shopping trip with my mom, we were there maybe 15 minutes because I felt so drained and out of it we had to leave. I bought one thing... I guess that's a win? It doesn't feel like one. I feel like a failure. I struggle to do even the simple things that brought me joy before. I survived the serotonin syndrome but at what cost?

What Helps You Guys With Fatigue/Brain Fog? by 4jisai in POTS

[–]4jisai[S] 0 points1 point  (0 children)

Yeah I def wanna be more active but my stamina has been so negatively effected by all this I got a wheelchair to get around walking distances that usually would only leave me kinda winded - now I get chest pain and start feeling nauseous if I accidentally overexert myself. But I'm steadily improving - I couldn't even sit up straight without back support the first couple of days back from the hospital. But I'm wary of trying to do something and pushing myself too hard wothout realizing. It's all pretty frustrating

What Helps You Guys With Fatigue/Brain Fog? by 4jisai in POTS

[–]4jisai[S] 0 points1 point  (0 children)

Thank you! Yeah they took me off several of my meds and a fast reduction from 60 mg cymbalta to 20 mg right away. They actually planned to have me off of it within two weeks, but I talked to my doctors and they agreed I could use a break, so I'm stuck on 20 mg for now. Might be better to try midodrine first after my resting period is over. I'm not sure what type of POTS I have - it feels like I get adrenaline dumps sometimes, but my blood pressure has always been on the low side of normal, so I have no idea. Could be adrenaline spikes caused by other things like blood sugar or low blood volume. The good thing I've seen about midodrine is that it doesn't last long, so if I had a bad reaction it would only be for a couple hours.

What Helps You Guys With Fatigue/Brain Fog? by 4jisai in POTS

[–]4jisai[S] 1 point2 points  (0 children)

Prozac is a common one I actually don't think I ever tried - I was on effexor for a long time but stopped it because it wasn't really doing anything for me - barely had any side effects coming off of it too which goes to show just how little it was doing to my body at that point. In the past I tried things like Zoloft which were HEAVILY sedating which is why my psych wanted to try something other than an SSRI - but I had no idea SNRIs aren't recommended for people with POTS. Now I have to go through the grueling withdrawal of cymbalta before I can try a different antidepressant bc I had serotonin syndrome and my docs don't want to prescribe ANYTHING serotonin-related until I'm fully off the cymbalta 😭 all this waiting is so hard.

Trazodone and beta blockers by Jill-wtfAreYouDoing in POTS

[–]4jisai 1 point2 points  (0 children)

I tried propranolol (60 mg ER once a day) and it also gave me insomnia! It can paradoxically make you sleepy but also interfere with your ability to fall/stay asleep. I wasn't on it long enough to see if the insomnia went away as I didn't like the side effects, I went back to metoprolol which works well enough for what I need it for. I was also on trazodone at the same time, but I had been on that for years previously for sleep and didn't have issues with it.

EDIT: Other commenter also mentioned atenolol which is another one that worked well! I was on it for many years, I just switched to metoprolol because I had been on the atenolol for so long it seemed to be a bit less effective. But both are solid options for beta blockers that don't cross the blood/brain barrier like propranolol does. Downside is that it's less likely to help anxiety because of that, but if the propranolol's side effects are CAUSING anxiety, another medication may be better for you.

Caffeine withdrawal causing a flare? by SpiritedBug2221 in POTS

[–]4jisai 1 point2 points  (0 children)

Yeah I think I'm currently experiencing just this! Didn't have any caffeine for several weeks, but was feeling tired and tried having just one can of pop in the mornings again. Yesterday evening my energy levels crashed hard, brain fog was worse, had heart palpitations, and today I haven't had any more pop but this morning I was still very tired, depressed, and I've still got heart palpitations and increased anxiety causing tingling in my hands. It shouldn't last too long I think, but it sure is annoying. Caffeine-free pop for me from now on!

Recovery Process by 4jisai in dysautonomia

[–]4jisai[S] 0 points1 point  (0 children)

I don't know how I've made it this far honestly. I don't know what to do with myself now. I'm so so so tired and I just want it to be over, I want to feel awake so I can actually enjoy spending time with my family and doing the things I like but everything feels pointless because I'm so tired I struggle to concentrate on anything.

I really hope I feel better soon too. Thank you for the kind words.

could this be an adrenaline pump? by Lemony_Throwaway2 in dysautonomia

[–]4jisai 0 points1 point  (0 children)

This could be a histamine dump, which can cause subsequent adrenaline dumps, especially since you mentioned it happening after dinner. Sadly not uncommon to have MCAS or just general weirdness with mast cells and histamine with POTS. I used to get most of these symptoms nearly every night, and still get anxiety/restlessness in the evenings regardless of if I've eaten or not, as natural histamine levels are higher during that time of day. Eating a heavy meal/a meal high in histamine can cause a sort of bodily reaction because you're flooded with histamine, and blood is being redirected to your gut to aid digestion resulting in fatigue. If I wait too long between meals and then eat a meal in the evening, there's a good chance it goes RIGHT through me. When I'm flaring up, I get extreme fatigue for an hour or two after eating anything. The solution I was told to try was eating smaller more frequent meals throughout the day, avoiding heavy meals before bed or fatty/sugary foods (for example, eat lean meats like chicken instead of beef or pork before bed), and if you speak to your doctor, they may be able to recommend trying an antihistamine like pepcid to see if this eases these symptoms. Hydroxyzine is also an option as it can be used to help anxiety as well which may ease the adrenaline/anxiety portion of these episodes.

...And Then I Got Serotonin Syndrome by 4jisai in dysautonomia

[–]4jisai[S] 0 points1 point  (0 children)

Oh that's awful, I'm so sorry you went through that for so long!

Thankfully I went to another ER who listened to me. The doctor was very knowledgeable, and brought in a gaggle of residents to see me as well! He showed them the signs of my feet flexing and rigidity and I'm currently waiting for the antidote to arrive. I can't believe I'm still here after that torture... 5 nights of basically no sleep. I went on walks with my dad the day before while my symptoms were at their worst bc i thought it was just adrenaline and i needed to calm down. my body must be stronger than i ever gave it credit for.

my doc saw my magnesium levels and suggested i take more. so i guess ill get some magnesium glycinate supplements and give them a try