Mistri_The_Squirrel

On 2/19/2018 at 8:12 PM, RecipeForDisaster said:

My husband is a nurse, I get a new IV each time. So far I haven't been able to keep one working more than 8 hours. Normally they would send a nurse out. I could actually do it myself if I had an extra hand. It's not great but it's better than nothing! I am trying to keep my veins decent so only do the fluids up to 3 times weekly. 

 

i have no idea what is wrong with me-NO diagnosis!! Probably not POTS but dysautonomia. I have other stuff for sure, like positive ANA. 

Thank you for the info.  I just got my POTS diagnosis in December, so I don't know that much about it.  These IV fluids are just to improve your symptoms, right?  I mean, it's not going to be a medical emergency if you don't get them, is it? 
 

On 2/20/2018 at 6:41 AM, RecipeForDisaster said:

I think I wish I had that side effect these days. I would never seek chemicals to improve my mood, but this week my literal worst nightmare came true and I lost my young healthy horse who was my soul mate... then lots of other bad stuff has been raining on me and I am overwhelmed mentally and financially. It has been awful and I've already lost 4 percent of my weight. I could use a boost but I don't like the artificial kind. I want to fix my circumstances  

 

i don't recall any mental effects, good or bad, from mestinon. I DO notice that I am happier when I feel better (not the other way around) even though I normally don't think I am unhappy at all even when very ill. I cope really well, most of the time. Oddly, IV fluids generally boost my mood a lot... I guess it's just not feeling so rotten, or better brain perfusion. 

I'm so sorry to hear that you are going through such a bad time right now. 

I can relate to financial woes.  I haven't told many people about this, but I was almost homeless during the time I didn't know what was wrong with me.  I thought I could have a serious illness, and I wondered how I was going to help myself if I was living in my car.  I also faced having to get rid of my guinea pig because I knew I could not take him with me to live in my car.  I think that was the most heartbreaking aspect of thinking about being homeless.  I have such a bond with him that I do wonder how I will get through it when he passes away.  I plan on getting another pet before he reaches old age, because it's easier for me to get through the grief of losing a pet when I have a second pet to comfort me.  But I haven't felt like I'm well enough to give proper attention and care to 2 animals, so I wanted to wait until I got better (I am no longer facing the possibility of homelessness at this time, and I don't think it will come to that again).

Sorry, I guess I went on a tangent there.  I'm just saying that even though I'm not experiencing your grief, I can imagine it is very bad.  And I know it's really hard to deal with financial problems.  I'm sorry you're having to deal with all of that, @RecipeForDisaster.   ((Hugs)) to you.  

Oh, I also wanted to ask if you have anything on hand like Ensure (those nutrition shakes)?  I've found that sometimes it's easier to get one of those down than it is to eat real food.  I guess you can actually live off those things for awhile if you need to.

To me, the light-headedness is the worst.  The feeling that I'm going to pass out alarms me.   Then I get anxious, which makes it worse.   I try not to get too anxious and tell myself I will be okay. 

The brain fog I had before I started on Pristiq was almost as bad though.  I felt like I was going crazy and had a hard time functioning.  The brain fog is much better now, and my depression and anxiety have been better too.  Unfortunately, the Pristiq raises my heart rate and I'm pretty sure it was causing me to have low sodium levels before I started taking salt tablets.  I had to go down to a very low dose (25 mg).  I'm just about out of options when it comes to antidepressants, so I feel like I have no choice but to stay on the Pristiq.  I can't function without it.

The Pristiq also helps with the numbness and tingling in my lower legs.  When I was weaned off of Cymbalta but hadn't started Pristiq yet, the "buzzing" sensation was so aggravating that I was constantly rubbing my legs or soaking in the tub to relieve the sensation.

I also get vertigo at times.  I tend to get it when my sinuses are bothering me, so I'm not entirely sure it's related to the POTS, but it may be.

There are other symptoms, but I think the ones above have been the most bothersome. 

Are you able to get a tilt table test done?  

Hi, JP0324!!  I don't have advice to give about medication or symptoms, as I am new to this myself.  But I wanted to send you a virtual hug.    ((JP0324))

I'm sorry you're having to go through POTS too.  I have anxiety about my POTS and the medications as well.  I try really hard to be proactive about the situation, and at times that has involved being pushy when people don't seem motivated to help.  If you don't have the strength to do that yourself, do you have someone you trust enough to permit them to act on your behalf?  I had to do that for my dad at times when he was sick.  He had to sign papers that said the doctors were allowed to bypass confidentiality when speaking with me.  It sounds like you're so ill at times that you may want to have someone do that for you.  Is there someone who can do that for you?  (Not every day, just when you're too sick to be tenacious on your own behalf.)

I've been prescribed Klonopin for my anxiety, but also for sleep.

It helps bring my heart rate down as well.  I'm not sure if a benzodiazepine is the best medication to prescribe for long-term use (it's addictive), but that is for you and your physician to decide.

I have a prescription for .5 mg tablets, 1 in the morning and 2 at bedtime, but I rarely take that much.  I usually take half that.

It does help with fatigue, because I am able to relax enough to sleep pretty well at night.   It can make you tired when you take it during the day, or it can make you feel less tense and almost energized because your tension is decreased.  I wouldn't say I have any side effects from it, but I honestly don't know if I'm addicted to it or not.  What I take isn't a high dose, but I'll bet I would at least have some irritability if I tried to go without it. 

I do take the max amount prescribed during times of high anxiety, but that isn't very often.  Whether you take it as needed or on a set schedule depends on what your physician advises. 

I'm not sure if my depression has anything to do with my POTS, but I noticed that I started having balance problems after I had been lying in bed all of the time when I was not at work.  My dad had died and I was in a deep state of grief. 

I went to an ENT, had some tests done and was told I had some sort of unspecified vestibular disorder.  I believe it happened because I was lying on my left side so much and very sedentary.   I had physical therapy and that seemed to help with my balance, but I was still having pre-syncope espisodes (though I didn't know what they were at the time).

But I have been having pre-syncope episodes sporadically for years.  They were just few and far between, so I wrote them off as the result of being dehydrated or not eating enough.  Eventually they became frequent enough to be debilitating.

Are the IV fluids a daily thing?  Does someone come to your home or do you have to go to the hospital, or?  

Do you have additional diagnoses other than POTS?  No need to say if that's too personal. 

I just got my POTS diagnosis in December, and I don't yet know if there is anything going on in addition to the POTS.  I suspect there is.  I'm not sure where to go next though.

Thank you for responding, RecipeForDisaster.   I'm glad it's working out for you so well!  Hopefully I'll find something that works too.

My stomach is upset this morning.  I just ate, and now it is more upset, so I'm hesitant to take this pill.    This is such a bummer.  Hopefully my stomach will calm down soon and I will be able to take it again.  I want to give it a fair shot.

Hoping more people will respond so I'll know whether or not the drugged feeling is as strange of an occurrence as it seems to be.   

I just started Mestinon today (technically yesterday, as it is 3 a.m. here).  I was told to take half of a 60 mg pill three times a day.  Nervous about the possible digestive side effects, I took only a quarter of a pill at a time.  I'm really glad I decided to do that.

I was warned that there would probably be stomach upset and diarrhea.  I have not had that.  What I have had is the feeling that someone gave me an illicit drug.  I feel high, but not in a good way.  Is this normal?  I was not anticipating this at all, because I was not warned about it and the info that came with my prescription didn't mention it.

So I'm wondering if anyone else felt this messed up when starting Mestinon, and if this feeling will go away.

I wasn't going to take a second dose today (I was planning on driving), but as the drug wore off, many of my POTS symptoms seemed to spike.  I felt like I was going to have a pre-syncope episode.  So I took another dose to keep that at bay.  But I'm wondering if that is normal.  If I miss a dose of this stuff, are my POTS symptoms going to come back with a vengeance? 

Sorry I haven't introduced myself properly, but I'm feeling pretty messed up right now and it's causing me some concern.

Thank you in advance for your help. 

--Mistri