Mistri_The_Squirrel

On ‎3‎/‎1‎/‎2018 at 1:04 PM, RecipeForDisaster said:

I have that same inner conflict. Do I mention this odd, seemingly unrelated symptom to potentially help in diagnosis?

 

That's awful about your family. I'm glad mine doesn't know anything. I'm pretty good at faking being okay, I guess!

 

My TTTs haven't come up with much that is useful, but the first one was done wrong, and then second began with very painful and scary biopsies which undoubtedly changed my physiology.

Do you feel like you can trust that D.O. not to think it's in your head?  I feel like the nurse practitioner I am seeing now has probably heard it all, so I'm not too worried about her thinking that, but the nurse I mentioned earlier in the thread treated me rudely...so I guess I have to be careful what I say to which person in that office.

My family is very dysfunctional, and unfortunately I don't have a spouse or boyfriend.  I really don't have friends where I live, and it's hard to go out and meet people when you always have to worry about when your next pre-syncope or syncope episode will happen. 

It seems weird that they would do biopsies before a tilt.  Seems like that would be an obvious confounding variable.  Sometimes I wonder what these people are thinking.

I can totally relate to this.  I've spent a lot of time taking my blood pressure and HR and noting when I would take my meds, to see if there was a pattern.  Other than the fact that one med raises my HR and one brings it down (which I already knew), I saw nothing.  I thought for sure that if I was diligent and studious I would be able to see more in the way of patterns.

I'm still thinking there must be some sort of sense to be made of it all, but I just can't see it.  

19 hours ago, RecipeForDisaster said:

Sometimes I come home from appointments extremely miserable. Most of the time I force myself to stay positive. 

 

You're exactly right, better to pretend we are really okay than that they don't know what is going on or what to do about it. Once I saw my cardiologist and told him I wasn't up to eating or walking without wobbling over for the past 5 days. He wrote in his summary "glad you're doing better". 

 

Being here is is helpful because I hardly tell anyone about this. It's too weird, sketchy/fake sounding, and hard to see. I tell people who have seen me pass out or collapse.

Good grief!!  Talk about a doctor being in denial!!  That is pure craziness.  But they don't have to deal with the discomfort of being ineffective if they can pretend they aren't.

I know what you mean about not talking to people about it.  My sister does not understand what "my problem" is, and she told me I just need to try harder to get well.  She also told me what a burden I am on the family.  I feel like there's no point in trying to explain things to someone who seems like they would be happier if I didn't exist. 

I'm glad my mother was in the room when I had my tilt.  Otherwise, she would not believe that I have a medical condition.  The whole time I was seeking a diagnosis, she would make snide comments.  She asked me when I was going to admit that it was just anxiety.

I also didn't tell my doctors about many of the weirder symptoms when I was seeking a diagnosis, because I figured they would write me off as crazy.  I told them only about the symptoms I thought they would take seriously.  Now that I have a diagnosis, I feel like I can be more open about what I experience...but I know I can't be totally open...because they won't believe me.

On 11/16/2014 at 7:57 PM, Raisin said:

How about....I didn't choose my underwear by the 'This is ER accptable' rule today! WTG!

  I thought maybe I was going to have to go to the ER recently.  When I was grabbing a clean t-shirt out of the drawer, I made sure to grab, "If You Don't Talk to Your Cat About Catnip, Who Will?"    Because who wants to deal with someone who has no sense of humor?   

It is my understanding that weed tends to raise your heart rate and lower your blood pressure.  When I was younger I used to smoke it and found that it would raise my heart rate.  So I'm not sure it would be a good idea for me to do it now.

I have been thinking a lot about this lately.  Today I threw out a couple of old concert t-shirts that have holes in them.  It was unpleasant to do that, as I was feeling very nostalgic about them.  But I've told myself that it's time to get rid of some of the excess.  I can't take care of it all...I can barely take care of myself.

Keeping fish tanks is something I used to do quite a bit, and it was very therapeutic for me.  I had more than one, and while I was focusing on pruning plants in my planted tank or trouble-shooting something wrong in my saltwater tank my mind was on that problem and not my health problems.  Unfortunately, I don't know when I will be moving next, and filling up a 75 gallon tank and a couple of 20 gallon tanks is not something I think I should do.  And it's enough to try to keep up with the one pet I have.  

Maybe when I'm feeling a little better?  It would be great to have the distraction now, but oh well.

21 hours ago, RecipeForDisaster said:

Interestingly, my helpful doctor is a DO. He's a hematologist but I do have known hematology issues in addition to all of the undiagnosed stuff.

 

i do try supplements and vitamins but haven't had much effect so far.

 

Quality of life... I don't think doctors have a problem with us having zero. I usually push through and do okay, but there's a tremendous amount of compromise and lying to myself involved.

Maybe I should be seeing a D.O.

I think doctors who don't know what to do about what's wrong are usually going to pretend like there isn't anything wrong.  So having no quality of life is just another part of the problem they refuse to see.  It's much easier to pretend like there's no problem than it is to admit you aren't up to the task of solving the problem.

I am trying to have a positive attitude about everything because I feel like it helps me, and I feel like nothing good will come from having a bad attitude.  But sometimes I am overwhelmed by how bad I feel or by the ****** reactions of healthcare providers...and my own family.  

Have you thought about seeing an osteopath or a naturopath?  I've been told I should consider going to a doctor who is an osteopath (a D.O. rather than an M.D.) because their approach is more holistic.  I don't know if that is something you'd want to do, but it seems like it would be worth a try if the new doctor winds up not being what you need.

There is definitely a quality of life issue with this stuff.  I'm kind of in a spot myself, because my antidepressant aggravates my POTS, but I can't stop taking it.  I need to have a working antidepressant to function.  I'm pretty much out of options after being depressed for 30+ years.  I'm at the minimum dose instead of the dose that works best for me...but there's nothing I can do about that.

On 2/23/2018 at 4:11 PM, vep123 said:

Thanks all! That's all good advice and I'll definitely try it all out. Do you know of any really inexpensive meal replacements? I have a grad school budget so the cheaper the better.

Well, there are store brands of Ensure, and I think there is a powdered version.  It's not mac 'n' cheese cheap, but it's so much better for you than stuff like that.  

I'm glad you have someone like that in your life.  It is so hard to have to deal with this stuff without that.

This may sound kind of lame, but one thing that has helped me relax is listening to guided meditations on YouTube.  Of course, you have to find one where the person doing it doesn't annoy you.  Some of the people doing these things have annoying voices or sound like they are talking to a kindergarten class.  LoL  Anyway, I like to put a sheet mask on my face and listen to an Australian man with a soothing voice tell me that everything is alright.  It sounds silly, but it does help me relax and forget about my worries for a little while.

Exercise is definitely a great thing to do if you can tolerate it.  I used to walk a lot.  I can't do that anymore.  But I am doing some strengthening exercises, and my mother has a recumbent exercise bike that I can have if the two of us can manage to get it over to my house.

It would be great for you to be able to get your test soon.  Then you'll have some answers about precisely what's going on and what can be done about it.

On 2/23/2018 at 6:56 AM, RecipeForDisaster said:

Yeah, it's sort of like, well, you are still alive with this BP so I'm not gonna worry about it. Even when I can't eat, sleep, walk, etc. because I'm in shock. I now have one doctor who will think outside the box and promised he won't give up on me until we figure this out. It's gonna be a long process but he has already found some interesting stuff in my labs that was never uncovered. I wouldn't have these fluids if not for him.

 

Honestly, I don't even know what specialty I should be falling into. My first visit with the autonomic neurologist in Boston, who wrote many studies I have read, he told me that he had a patient from Hawaii that came to see him and she was just like me. He NEVER figured out what was wrong with her, and he is the expert! Scary huh?

 

Thankfuly no one has proposed that this is mental, I think it's too obvious that gray cold skin and stuff are not from my mind. However, one of my cardiologists said that the pounding heart may be "from my brains response to what is going on" which is obviously bunk. I can SEE my heartbeat through clothes. I am not nervous or afraid. It WOULD be so nice if they would admit "I haven't seen this before but I am going to figure it out or send you to someone who can". Isn't that what they would like for themselves?

It's pretty hard to understand some of the reactions from doctors.  I guess most of them haven't had to deal with something like this in their own lives, so it's like some sort of abstract concept to them to think about how it would feel.  And it's frightening to think that the experts haven't figured out what's wrong.

I'm glad you have a doctor who is dedicated to helping you.  I feel like it would be comforting to have someone who isn't going to stop looking for answers.  I hope you have gained some comfort from it, anyway.

My own situation is that I don't know how dedicated my nurse practitioner is to helping me or listening to my concerns.  I've only met her once.  I felt really good leaving there after the first appointment, but I'm no longer as confident.  I guess I will just have to wait and see how things go.

I have not been diagnosed with hypothyroidism, even though I have signs of it.  My mother and both of my maternal aunts have thyroid problems, as do others in my family.  But the times I have had TSH, T3 and T4 tested, it comes back "normal."  

Have you checked out the "Stop The Thyroid Madness" website?  If not, you may want to do that. 

I'm in the process of figuring out what to do, as apparently a lot of people are told they do not have a thyroid problem and later find out they have Hashimoto's. 

I have areas of my body that feel bruised, even though there is no bruise to be seen.   It's not every inch of me, just some areas.  And I've noticed that I am very sensitive to certain things that other people wouldn't be.  Sometimes I will hit my finger on something and it will be excruciating.  But I know I didn't hit it that hard.

And my lower legs are always numb and tingling, and sometimes there is a burning sensation in my feet.  (Already been tested for MS, don't have that.)

I don't know how long the lower leg thing has been going on, because I was on Cymbalta for years for depression, and once I came off of it, suddenly I had these sensations in my legs.  I think the problem causing them was probably there for quite awhile, I just didn't know it because the Cymbalta blocked that sensation.

I've been told that this goes along with having POTS.  However, when I have--or am going to have--a pre-syncope episode, my fingers and lips will start tingling as well.  But my legs feel numb and tingly all the time.

I had a really strong craving for cheese curls/puffs last night.  I can't think of the last time I've had them, and I don't think there was any advertising or media that caused me to think of them.  Yet there they were, planted firmly in my mind.  I don't even like them that much.  The flavor is too much for me.

Does anyone else find that certain foods are just too flavorful, and you don't like them for that reason?  It sounds like a weird thing to say, "sorry, I don't want it, it's not bland enough," but that's how I feel sometimes.  And yet, other times I crave things like that.

Thanks, everyone!!  

15 hours ago, RecipeForDisaster said:

I was afraid of the neurological and digestive side effects, mostly. Some described tongue spasms, and I have enough tight muscle problems now. If you look at the side effect profile it's fairly scary... sweating, drooling, etc. I really didn't get anything except that I do sweat a little if i "should" (it's hot or I am very stressed) where I wouldn't before.

 

i had to ask about 6 doctors before I got the order for IV fluids at home. A few aid I didn't need it if I could drink (sigh), a few said I could come in and get them administered or prescribed -when I needed them- which of course would be when I can't drive, so that is no help. I do think people with POTS can get to this level but I have some other kind of dysautonomia and probably more. It amazes me when doctors aren't worried about a really low BP but it happens. I think when they don't know what to do they are able to pretend it's not a problem. 

 

Drinking really never helped me much, it's like even if I drink isotonic electrolyte solutions, I pee them right out. I also NEVER get thirsty. When I get IV fluids, I don't pee them out like that, but I don't understand why. I'm not dehydrated before them, though. I do believe that my body is letting go of oral fluids it doesn't think it needs, and the IV takes that judgment call away by just putting the fluids right into my bloodstream. After 24-36 hours the effect is pretty much gone, so I must be eventually letting go of that too. It just takes so much longer and boosts me quickly.

 

Mestinon has helped me to regulate my temperature. I'm almost cold blooded, I am too cold when it's cold and too warm when it's warm. 

 

I am definitely getting worse over time, my BPs are trending down if taken without meds, but I don't have POTS. 

Ah.  It sounds like things are complicated for you.   For myself, I do wonder if this is going to get worse as well.  That has been the trend.  

One thing I've noticed about doctors is that most of them seem to have a flow chart mentality.  And if your symptoms don't fall into their scope of knowledge, or if their flow chart doesn't provide a clear answer regarding what to do, then that means you either don't have a problem or you have a mental health problem.  There doesn't seem to be an acknowledgement that maybe they just don't know what is going on and what to do about it.  And many are too prideful to refer you to someone in their own specialty who might know how to help. 

Trying to get a diagnosis was frustrating, but once I got my diagnosis I thought everything would be alright.  But the reality is that I don't know if these people are going to help me or not.  I still feel like they probably will be able to, and that my experience was probably just a weird situation that wasn't handled correctly.  But I'm not sure.

Oh, hey, I'm on that list!     Thanks for the welcome, @Clb75!!

I was just diagnosed with POTS in December, but I've been having symptoms for awhile.  I have also been dealing with chronic moderate to severe depression and anxiety since I was a kid.   The situation is that my antidepressant is working, but it aggravates my POTS.  And I don't have much left to try as far as antidepressants go.  So I'm on the lowest dose and trying to find relief for my POTS. 

After I was diagnosed with POTS, it didn't take long for me to learn that there was no easy treatment or fix.  I had really thought that 2018 was going to be the year when I would finally be able to conquer the world!  Not sure about that now.  Maybe next year?

I'm newly diagnosed, so I don't have a lot of advice to give, but I've found that it's good to keep some Ensure around.  I drink that when I'm not up to eating regular food.  It's also easy to take with you in the car or have when you are too busy to prepare food.  I think they have a high-protein version too.  You can get it at the grocery store, Walmart or the drug store.

As far as brain fog goes, my antidepressant has helped with that. 

I was having a lot of fatigue for awhile, and I got some blood work done.  My thyroid levels were normal and B-12 was okay too, but my vitamin D was low.  Now that I take the amount of vitamin D my doctor advised me to take, I feel much less tired.  If you haven't had these things tested recently, it might be a good idea to ask your doctor about it.

I don't have the symptoms you're having, but I want to tell you that chronic heartburn is something not to be taken lightly. 

As @Pistol mentioned, acid reflux can cause the lining of your esophagus to become pre-cancerous.  It is called Barrett's Esophagus and it can be treated...as long as you know you have it.  Taking medication for your heartburn will not prevent esophageal cancer if you already have Barrett's.  The only way you can know if you have Barrett's is to get an endoscopy.

It is important that you consult a gastroenterologist about this, as they are the doctors who will be able to give you proper advice about how to control the situation and avoid getting cancer.  Because you have POTS it will probably be harder to get your digestive symptoms under control.  Best to see an expert on the digestive system so it does not progress to something worse.  Your primary care physician or your POTS doctor may not be fully aware of how dangerous heartburn can be.

I'm not trying to be an alarmist, but I lost my dad to esophageal cancer.   The doctors he saw in the years before his diagnosis didn't know enough about it to recognize that he was in danger.  Esophageal cancer used to be a rare disease, but it no longer is.  My dad had a cough that was written off by doctors as bronchitis.   He was also given a prescription medication for heartburn by his primary care physician, who did not order an endoscopy.   By the time he had trouble swallowing he was already terminally ill.  You wouldn't have known from looking at him.  I wish someone had told me what I know now.

For more info, you may want to have a look at ecan.org.   I trust their site above others.   ECAN has a board of doctors who provide the information for their site.  

I don't mean to upset anyone; I just don't want anyone to die because of what they didn't know.   

I have a 24 oz. glass bottle that I keep with me.  I fill it with water, add a 1/2 teaspoon of salt and add 5 squirts of Mio Electrolyte drops and shake it up.  

I drink that throughout the day.  Before I was even diagnosed with POTS I was already in the habit of keeping a bottle of water with me to drink wherever I went. 

If you want to get in the habit of drinking fluids all day, you may want to keep a drink beside you at all times.  Set alarms on your phone or on some other device to remind you to drink it every hour or so in case you forget.  Once you have been doing that for awhile you may not need the alarms anymore.  Another thing you can do is keep a gallon of water in the fridge or on the counter and that is your amount you need to drink for the day.  It's easier to keep track of how much you have had and how much you still need if you do that.

10 minutes ago, RecipeForDisaster said:

I make my own nutrition shakes. I don't feel like drinking them lately but they are useful. 

 

I can live without fluids, but i may not be able to stand, walk, eat, sleep, etc. my BP can be in the 70s and I am not doing well in that range at all. A liter of fluids usually boosts me 10 points or so. I don't know if I'd die, but BPs that low are quite dangerous, I get all the symptoms of shock.

 

FWIW, I started with 15mg of mestinon and worked up to 60mg 3 times daily. I was really afraid of it. 

@RecipeForDisaster  If you don't mind me asking, why were you afraid of it?  Were you afraid of it because of the possible digestive symptoms?  (That's why I started low; I didn't think there would be anything else to worry about other than the digestive stuff.)

It does sound like it could be quite dangerous for you to not have that IV fluid.  I wonder why the nurse at my nurse practitioner's office was acting like POTS is not that serious.  It sounds like it can get quite serious for some people.

Was getting to that severity of POTS a gradual progression for you?  I started having pre-syncope episodes infrequently years ago.  It didn't impact my life that much, and I figured I was just not eating right or that I was dehydrated sometimes.  I started having more and worse symptoms, and I started to see doctors.  That was in the spring or summer of 2016.  Now I am quite disabled by POTS.  I make it to the grocery store once every 2 or 3 weeks.  My mother often drives me to appointments.  Other than that I'm housebound.

On 2/19/2018 at 10:36 PM, statesof said:

Hi Misti, I can completely related to your symptoms, when I began mestinon (I was only doing 15mg's) for the first week maybe week and a half I definitely felt that 'illicit drug' feeling your talking about. It was kind of weird, in some ways I was more 'motivated' both about doing mundane tasks as well as feeling this 'wanting to be around people' feeling, and that weird 'high' feeling.

So yea definitely felt like I was on uppers or something, it did go away after a week or so and even when I take more of a dose that feeling didn't come back so I'm thinking it was just my brain adjusting to the medication.

@statesof  I can't tell you how glad I am to read this!!  Thank you so much for responding!!  I appreciate it more than I can possibly tell you.   I think I will be giving the Mestinon another try, I'll just go about it more slowly and stay at my Mom's just in case.  If it doesn't work out, it doesn't work out, but I feel like it will be worth all my efforts if it ends up helping me.

I do wonder if what happened to me had to do with the fact that I'm on Pristiq and Klonopin.  Like maybe the interaction of Mestinon with the other drugs caused it.  Are you on any medications like these?  Not trying to pry.  No need answer that if it makes you feel uncomfortable to do so.  

I'm going to make some calls and find out more about getting IV fluids if the need arises. 

I am pretty sure the Pristiq I'm on causes me to have low blood sodium, and I have to compensate for that with salt tablets (Pristiq is known to cause low blood sodium).  I have had chronic moderate to severe depression with anxiety for years, and I'm just about out of options as far as meds go.  I wind up in crisis if I go without medication for too long.  I need to be on something, or I will not be able to take care of myself.  So I don't think getting rid of Pristiq is an option.  I stay on the lowest dose--even though a higher dose would be better for me mentally--because it aggravates my POTS symptoms. 

Since I started taking salt tablets, I haven't had the amount of confusion I was having before.  I know that if I am getting confused and having pre-syncope, it may be because I'm not keeping up with what my intake should be and I need to be taking salt tablets and taking in fluids as rapidly as I can.  But I worry that someday I will get an intestinal bug and I won't be able to keep up with the fluid loss.  I feel like I should be able to get an IV if that happens, but I've found that when I am sick and scared people just tell me to calm down, even if I'm not crying or anything like that. 

I had a hard time getting doctors to take me seriously when I was trying to get a diagnosis, because as soon as they find out I'm on Pristiq and Klonopin, they assume my symptoms are "just anxiety."  Then when I called my nurse practitioner because I was alarmed at how bad I was feeling on Mestinon (the drugged feeling turned into what felt like flu, but I didn't have a fever), there was only a voicemail available.  I waited all day for someone to call me back and no one did.  The pamphlet with the Mestinon said that I should not discontinue it without asking my doctor first, but I couldn't get ahold of anyone.  I finally called and pressed the prompt meant for nurses and doctors who call, and I told the woman who answered that I was not a nurse or doctor, I just needed to figure out if I was having a medical emergency or not and what to do.  She had me hold for a nurse.  

The nurse who answered acted irritated with me.  She told me that my nurse practitioner had noted on my file that it was probably just a virus causing my symptoms and that I should just stop taking the medication.  I'm not sure how I was supposed to know that, since no one bothered to return my phone call.  She seemed to think that I was also having POTS symptoms that I was overreacting to, but what I was experiencing was not just my POTS symptoms.  And if this was caused by flu, why did the drugged feeling start about 20-30 minutes after I took my first dose of Mestinon, and why did I feel okay the next day after stopping it?  And why didn't I have a fever?  I think it's easy to see why I feel like the Mestinon was a contributing factor. 

I wish the nurse I spoke to would've just answered my questions instead of being so rude.  At the time of the conversation, I thought maybe they were right and I just had flu or something.  I was thinking, "what if this gets worse?"  So I asked her at what point I should go to the ER.  She snidely told me that it's the same for people without POTS as it is for people with POTS.  I told her I didn't know what a normal person should do either.  I live alone and I don't have anyone to take me to the ER if it seems like I'm getting sick enough to warrant emergency treatment.  I just know that some kids have died from flu this flu season, and that I didn't get a flu shot at my last visit with my primary care doctor because she told me not to.

I had a bad experience, but I think I will try the Mestinon again.   @statesof said his drugged feeling wore off, so I'm thinking it probably would for me too.  I'll just have to go to my Mom's house and stay there the next time I try it, and I may start out taking one dose a day instead of 3...just until my body gets used to it.  I don't want to give up on this drug if there is a possibility it could help me.  I'll just do things differently this time, and if I have problems, I'll know not to call my nurse practitioner's office about it, because they don't want to hear from me.  It sucks that I don't feel like I can count on them to be there when I have urgent questions, but I know they know a lot about POTS, so I don't want to try and go somewhere else for treatment.