Abe

Anyone used Clonazepam? Did it help? I am trying to work my way into getting off Benzos generally, even though that has been the only medication that worked for me in the last 7-8 years. My doctor prescribed a long lasting one to replace Lorazepam and advised me to try it out first during the weekend. Yesterday was my first time and I did not get a single hour of sleep all night.

5 hours ago, Pistol said:

@Abe I was prescribed clonidine years ago for HPOTS with hypertension but had to stop taking it after five horrible days. I did not tolerate this med at all. But please know that there are many people who do very well on it and whose BP is regulated on clonidine. 

Unfortunately with dysautonomia we have to be brave and try new meds on a trial-and-error basis. Most of us are very medication sensitive, which makes it harder. I have learned that only by experimenting could we find the right med combo for me. You wont know if it works for you unless you try it. Like I said - many people tolerate it very well. 

Thanks @Pistol.  I will try it.

Hi Everyone.  Please, is anyone familiar with Clonidine?  Was it helpful for you or not?  Do the positives outweigh the side effects? This is the second time I have been prescribed the medication.  First was the tablet and now, the patch.  I never took the tablet because I was too afraid of the side effect.  I have just experienced a lot of bad side effects in the last 8 years that I now treat every medication like a death door knock.  My blood pressure has been extremely high the last few months and I can't keep going like that.  Thanks.

So sorry @MaineDoug.  Same experience for me too but not as long as you have.  I don't even know where to begin anymore but just keep living one day at a time.  I am finding it very difficult to encourage others because I am barely holding it together myself.  It's like I'm watching life drain out of me.  I pray it gets better for you.

6 hours ago, Sarah Tee said:

@Abe, that’s great! What did you make?

@Sarah Tee I made vegetable soup. 😃

You all are amazing. You made me feel so much better today.  I usually take it pretty hard when I can't do much of anything but just lay in bed all day. I was able to stand in kitchen cooking for like 2 hours, two days ago.  Thank you for teaching me that these smaller achievements are marks of progress.

On 7/29/2023 at 6:39 AM, Sea otter said:

@Abe I totaly understand what you mean. I also have a lot of symptoms changing day by day for almost 5 years. Sometimes I think I will lose my mind because I feel so awful. All this physical symptoms are affecting my emotions. I was diagnosed last year so I am still learning how to survive every day, but it is not easy at all. Like we have a lot of diseases in one which we can control at all. Plus all the other problems that come with chronic illness... I don't think you are losing your mind. This is all part of POTS. What do I do when I reach my limits - usually rest or sleep. As I said I am still learning... 

Thank you so much @Sea otter

On 7/28/2023 at 12:10 PM, MomtoGiuliana said:

Have you been able to try IV fluids?  That helps me at least stabilize a bit when I am in a bad flare up.

I also avoid triggers.  A big one for me is warm showers in the morning.  I can feel absolutely horrible after one.  I only shower at night when I am better hydrated and whatever else it is that makes me feel better in the evenings than in the mornings.  I avoid sugar, and increase protein and smaller more frequent meals.  A large breakfast or anything sugary or carb heavy can trigger worse symptoms for me.  I try to sit upright most of the day (may not be possible all day--but when I can at all tolerate it).  Too much lying down seems to cascade to worsening symptoms for me.  Even tho I at first feel better lying down.

I agree about finding something small you enjoy or that even distracts you for some short time at least.  I need quiet (TV etc is too much when my symptoms are bad).  But I agree that hearing nature can be soothing.  There are apps such as the Calm App that contain nature sounds or other gentle sounds or music if going outdoors is not possible.  Fresh air though I find is helpful (as long as it is not severely hot out).

I know, the symptoms can be overwhelming.  

Thank you so much @MomtoGiuliana

5 hours ago, Pistol said:

@Abe Whenever I hit my Low I wallow in misery for a while and then I pick myself up and think about all the good things that are in my life. Essentially I count my blessings, literally. Sometimes it is simply the realization that there are birds singing outside and I am able to enjoy them. Thinking positive is a great medicine!

Thanks so much @Pistol.  It's been a long time.

9 hours ago, Sarah Tee said:

@Abe, I’m so sorry to hear you are experiencing all of this.

I don’t have POTS, but I have recently found out that I do have low blood flow to the brain similar to POTS, and on the couple of occasions that this has been reversed, it was amazing to feel “normal” again.

With low blood flow to the brain meaning a lack of oxygen (and presumably glucose), it’s no wonder we feel strange or odd or like we are losing our minds.

When I’ve reached my limit, I have a good cry, blame the universe, feel low, and wonder how it can be that diagnosis and treatment for autonomic conditions can be so slow and so hard to get.

Then after a couple of hours or a couple of days, I seem to regroup and start looking at the “What works?” page here, or reading posts. Often I find something new to pursue thanks to all the knowledge and helpful people here.

Thank you.

Is this just anxiety or am I really losing my mind?  I get the torture of the countless numbers of symptoms that come with POTS.  I get the extremely high blood pressures.  I am used to it.  I get the digestive issues.  I get the fatigue that feels like life is leaving my body.  I understand the constant bodily pain.  I haven't had a break in the last 5 or more years.  The one I can't and won't accept is the thought of losing my mind.  I was sitting in front of another doctor today (thanks to my Primary Care doctor who advised me to seek the help of a naturopathic doctor) and even though all I was saying makes sense, my brain felt so scrambled.  My vision was so bad, it felt like I was seeing triple.  It just felt like I died and left my body.  It seemed like I am in another plain.  The one thing I enjoy, programming, has become so difficult to do.  I just sit there and look at my laptop for hours without lifting a hand.  I have accepted that this might be my life but not even a day's break?  I am trying to get off of Lorazepam but it's the only thing that works for me and that maybe pushing it.  I can't use beta blocker (Metoprolol) anymore because I get very sick every time I take it.  What do you all do when you've reached your limit?  Thanks.

On 1/20/2023 at 7:11 AM, Misty4280 said:

I just started to work after a few years of learning to manage my symptoms. I thought I had a decent handle on things. I’m even working from home to make sure I can still elevate my legs and wear the necessary compression when needed. I’m only working 7 hours a day and I stay seated the whole time. But my heart rate has stayed elevated, even at rest. I had the flu 3 weeks before Christmas and my heart rate hasn’t come down below 120 at rest since. I’ve worked this job for 2.5 weeks and I got sick with nausea and vomiting. My question is, do any of you get physically ill when you’ve over done yourselves and if so, does it require you sleeping for a full day to feel even a tiny bit better? I still don’t feel well enough to work, but I need this job and I have to do it anyway. I don’t know what to do. Any suggestions?

@Misty4280This happens to me all the time. I still haven't learnt my lesson yet.  I just got through two weeks of very stressful work situation and now the last six to seven days, I haven't been able to do anything.  I can't even think straight at the height of it when my body get so stimulated due to the stress.  Mg whole body just shuts down.  If you are able to setup a schedule and pattern that your body can familiarize with, it might be helpful hoping you are not in a situation where work requests change randomly.  I tried doing that but due to the nature of my work, things change constantly for me.

@Pistol, @Sushi, @MikeO@DysautonmiaMatt, Thank you all so much.  Honestly, I just wanted to try something else to see if it will help.  I feel sorry sometimes for the pain my body goes through daily and the share amount of symptoms that I deal with even though I know all of us go through it.  It's just that when I get overwhelmed (as this year has being for the most part), I am blinded to everything else going on around me.  It's amazing what we all deal with.  I am grateful though for this place.  This forum has been my little safe place things get overhead.

I am scared of starting a new medication.  My body over-reacts to everything.  I am even scared to take Tylenol and regular vitamins.  I tried duloxetine few months back and although it helped a little for few weeks with body pain, everything else got worse so I had to stop.  I was prescribed 0.1mg of Clonidine.  Still not sure if I will take it but we'll see.

It's being a while since I have been here mainly because this year has been the worst since I got diagnosed with POTS.  I haven't had a day I call normal this year and things just keeps getting worse. After another round of tests, which by the way, all came back normal, I was prescribed Clonidine.  I have heard from many POTS patients that it helped them with the adrenaline dumps which I battle with daily.  I just want to know if anyone here have tried it and what was/is your experience?  I am scared to start another medication as I am trying to get off Lorazepam.  It has been the only thing that has helped me be able to work as little as I can over the last six years.  Thanks.

On 6/8/2022 at 8:19 AM, MikeO said:

Hi @Abejust following up to see if you able to get in and get any answers on this. Not sure if i have the same thing going on but i do get the stomach/pressure and tachy after eating (i love cooking just not eating) and i will also feel the pressure with my heart which keeps getting me into trouble with my cardiologist when i bring it up so i stopped as there is nothing wrong with it. 

@MikeOI haven't been able to go see my doctor and honestly, I am too frustrated to even pursue anything anymore.  Just have been struggling so much lately.  I haven't had a single symptom free day this year and everything just seemed to be getting worse.  I can barely work anymore.  The one thing that has kept me going through this nightmare, has gotten too difficult to do.  I tried an SNRI again and had to stop after just a week. Not sure how many medications I have to try before I get a semblance of normalcy again.  I'm interested in what others are doing to snap out of this insane, never-ending circle of misery.

6 hours ago, Pistol said:

@Abe I know exactly what you are talking about! I too used to get so anxious when I had to leave the house, for fear of passing out or the activity and stimulation causing a crash afterwards. I think it could be anxiety OR dysautonomia, both can cause these symptoms. I agree with @MikeO that the fluctuating PO2 levels do not have to be of concern. Anxiety as well as dysautonomia can cause vasoconstriction ( often giving us cold hands and feet ) which in turn can lead to low readings of oxygen due to less circulation in the fingers. Rest and avoiding stimulation is often needed to stop these scary symptoms. 

Thank you so much @PistolSometimes, I just totally forget all I've learned over the years or maybe it was the fact that I was out of home that added to my confusion.  I could tell that something was going to happen from the first day I left and I can tell from how the muscle tensions built up and got worse over days but I'm glad to be back home even though I need this kind of exposure.

14 hours ago, MikeO said:

Oh @Abeit is normal for your O2 levels to fluctuate. i have seen mine go from 99 to 88 before as well. While i do not know why that would happen i have seen it at Cardio rehab and even while laying in bed.

Like most eating is not a good thing for me as well. It may have had an effect with your O2 or just the stress with being out of you normal element.

I don't know what device you are using for obtaining your O2 levels i have also seen what finger you put the device on changes up the readings.

 

Either way i will say a prayer for you. Hopefully someone else will que in.

@MikeOThank you so much.  Everything is just beginning to sink in.  Thanks so much for your prayers.  Its amazing what our bodies can endure.

The last couple of hours have been a nightmare.  Not sure if I'm having a panic attack or something more serious.  My oxygen level fluctuated between 88 and 99.  That scared me to death.  Its my second time in six years that I would leave my house and a first time that I spent few days with a family.  I just got tired of being stuck at home with no change in fortune.  I initially thought this might be covid but I don't have any symptoms. Maybe I just didn't noticed.  Would have tried testing using the Home Covid testing kit but I am not at home. All I remember was this started after I ate.  Could a panic attack make my oxygen level fluctuate this much? It has settled down to between 95 and 99 but my breathing still seem mechanical.  Thanks.

Praying for you @MikeOthat all will be well.  This too shall pass.

14 hours ago, Knellie said:

Do you have Ehlers Danlos Syndrome? That can cause things to shift around in your eye and cause vision problems. Might not be that helpful but can be something to look into. Make sure the eye doctor knows about your EDS though, because that makes a difference. Good luck, I'm sorry you are going through this.

Thanks @Knellie I'm not sure.  Never tried to find out but the general symptoms of EDS doesn't seem to be something I have experienced either.  Maybe I just don't know.  I know I have Hyper POTS based on my daily symptoms but honestly, I am tired of chasing shadows.

12 hours ago, LostPrincess12 said:

You are such an incredible soul. You have no idea the relief you have brought me reading this. Your kindness with me is so appreciated 😭I screenshot this reply to read during moments of distress. It may sound dramatic, but the work you put here into this community for those of us struggling with symptoms that aren’t well known is literally life saving. Thank you SO much ❤️

I second that @LostPrincess12.  She's always been amazing helping others navigate this nightmare of a life and giving us hope and courage to continue.  Thanks @Pistol

2 hours ago, MikeO said:

@Abeare you ok?

Thanks @MikeO  I wish I can say I'm okay.  Surviving will be the right word.  I got up to go get something to eat in the kitchen yesterday and I almost fell over.  Everything seemed to have gotten worse than ever.  I can barely do anything.  Today I tried cleaning a little but standing up is just so painful.  Every part of my body aches.  My neck doesn't seem to be able to hold my head upright anymore.  Just rough all around.

1 hour ago, WatermelonSalt said:

My vision noticeably got worse the last year. I know it's blurry vision and not increased short-sightedness because changing the distance to the thing I wanna focus on does not make me see more detail. It just reduces the noise enough for me to be able to process it. I am thinking it's an aspect of mental fog, or something... when I take my stimulant prescription it reduces significantly as it makes your eyesight sharper, not better. 

Staying indoors means I am vitamin D deficient. Have you looked into that? I am bad at supplementing but I think that is the only thing I have left yet to try. Besides going out in the sun and "training" my eye again.

Thanks @WatermelonSaltI noticed when I take the benzo I was prescribed, it helps a little. Just temporarily.  No medication has been able to calm my nervous system.  I am bad at supplementing too but I do try Vitamin D few times a week (4000 IU).  The last time I had a vitamin D test, it was just barely at the minimum.

Anyone experiencing severe blurry visions?  I don't even know how to describe it anymore.  Everything feels shaky,  Can't focus that much.  Very sensitive to light.  Tightness and heaviness all around both eye sockets.  Not sure what to do.  It makes the little work I do very difficult.  Not sure if I am in a flare again but the last few weeks have been too rough.  Has anyone done anything to relief these ty symptoms?  If so, what is it?  I am dying for a relief.  Thanks.

8 hours ago, little_blue_jay said:

Abe,  how are you doing now?  

Thanks @little_blue_jayStill struggling but surviving.  Most days are miserable but God has been good to me.  I am still able to work a little bit.  My oxygen level seemed good except when my anxiety/panic is pretty bad.  The bodily pain and muscle spasms are worse but living with it,  None of my medications seemed to be helping but hoping this flair too, pass soon. My friends are pushing me to go down to Mayo Clinic but I'm just tired of the hospital setting and not sure how much they can help me.  Also it seemed to cost a lot to go there for a consult.

1 hour ago, MTRJ75 said:

A procedure developed in the 1930's seems to have some positive result in helping to "reset" the ANS. 

It basically an anesthetic that "stuns" the nerve cells that set off the fight or flight chaos. And it seems that a just a few treatments might have long lasting effects as it resets the nervous system to act normally again. 

I wonder if this would have some benefit in cases of autoimmune issues as well. One of the newer theories I've heard is that the autoantibodies don't necessarily attack and damage the nerves and pathways so much that they don't, but more in a way that they misbehave and react differently or wrongly. 

How amazing if we actually had an answer for almost 100 years, but simply forgot about it. 

Has anyone ever heard of this? 

https://www.healthrising.org/blog/2021/12/28/stellate-ganglion-long-covid-fibromyalgia/

This is amazing news.