Did Mestinon Make You Feel Drugged?

[Mistri_The_Squirrel]

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

[RecipeForDisaster]

I've been lucky, surprisingly, I thought 60mg 3 times daily was going to be too high a dose, but it helps me without side effects to speak of. I hope your body adjusts... it has helped me to regulate my temperature and sweat where appropriate, in addition to avoiding presycope. I think I did have some runny nose/extra sweating at first but that is gone.

 

If I miss a dose, I don't get worse than I was before Mestinon... there is no rebound so to speak. I just feel like I did before I started it. Hope this helps.

[Mistri_The_Squirrel]

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.   

[RecipeForDisaster]

I wouldn't say it's super helpful, but I don't have a lot that is! IV fluids, metoprolol, mestinon, and midodrine together get me up to "able to live" status. I can usually eat, get around, and sleep a couple of hours. If i feel I'm not up to eating so I can take my pills, I take a zofran and can usually manage. 

[Mistri_The_Squirrel]

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.

[RecipeForDisaster]

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. 

[statesof]

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.

[RecipeForDisaster]

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. 

[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.

[Mistri_The_Squirrel]

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. 

[Mistri_The_Squirrel]

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.  

[RecipeForDisaster]

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. 

[Mistri_The_Squirrel]

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.

 

[RecipeForDisaster]

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. 

[Mistri_The_Squirrel]

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.

 

[RecipeForDisaster]

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?

[Mistri_The_Squirrel]

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.

[RecipeForDisaster]

We'll see. I've only seen this guy twice but I do think he is caring. I'm very glad to have him and he does try to help even though I'm pretty sure he's not my primary need in a specialist. That said, I've thought that about my other doctors, all of whom have basically given up or just told me to get used to it, that we may never have an answer. I even think there is a reason that my baseline temp is around 97.0 (thyroid had been checked, but maybe not thoroughly?) and have been told we won't figure that out.

 

My first cardiologist even told me avoid any exertion to the point of not walking to the mailbox. He was worried for my safety but I don't think that is a good way to live.

[Mistri_The_Squirrel]

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.

[RecipeForDisaster]

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.

[eaudire]

1 hour 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.

Just popping in after a few months because this really resonated with me. For me, too, life is increasingly seeming like an exercise in just pushing through, made bearable by the possibility that one day I won't feel this way on a regular basis.  Self-deception isn't exactly bad if it's another tool in your box, I guess. 

I'm glad a couple of people have found some relief with Mestinon.  I'm going to bring it up with my doctor at my next appointment. Willingness to try medications has become my number one criterion for doctors,  as I'm also essentially undiagnosed at this point.  

[RecipeForDisaster]

I have told most of my doctors that anyone else in my body would be staying in bed 24/7. I still keep trying to stay active and work a few days per week. I'm grateful that I have a few tools I can use to get a little improvement or avoid a crash, but overall I still feel terrible all of the time and something as simple as stirring batter makes me a lot worse. I keep doing everything, though.

 

I really only have that one doctor who is adventurous in trying new stuff. It is only thanks to him that I have IV saline.

[Mistri_The_Squirrel]

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.  

[RecipeForDisaster]

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.

[Mistri_The_Squirrel]

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.