Mistri_The_Squirrel

14 hours ago, WinterSown said:

I have a set of Uproar Wireless by Skullcandy. Shop around, I've often seen them for 20-40% less than what they sell on their site. They have padding under the headband too so my scalp doesn't hurt wearing them. I really like them, I have a red set. And as headphones for music, they happen to be good for that too. 
https://www.skullcandy.com/shop/headphones/bluetooth-headphones/uproar-wireless

Thanks, @WinterSown!!  I think something like that would be helpful for me.  

I am on a med that can cause hyponatremia (low sodium) and have found that I don't have strong palpitations very often now that I supplement with salt and electrolyte drinks.

I don't know if that's what you need, but those things have helped me...so I just thought I'd throw it out there.

I was told my Holter was fine, except for the palpitations.  I was told to drink Gatorade and keep myself hydrated.  That was before my tilt.  I was not told that my tachycardia was abnormal.  But I think they had either ordered the tilt already or were thinking of doing it, so maybe they just didn't feel it necessary to go down that road yet, figuring they would know more after the tilt...?  I don't know.

I'm just saying that you can have POTS and be told your Holter is normal.  They don't see exactly what you are doing when your tachycardia is occurring (or what your BP is doing), so they don't know what exactly is going on just from the Holter readings.  It's a tool, but it has limited value.

7 hours ago, WinterSown said:

I can't wear them as they are made for people with ears bigger than mine, if they do fit it feels like my ears are corked with pressure backing up behind them.

Yes!!  People in my family have told me for years that I should wear earplugs to sleep like they do, but the pressure hurts!

What headphones do you have that you like?

2 hours ago, Clb75 said:

Have you looked into gabapentin for neuropathy? It’s commonly used for it and may be helpful. 

Thanks, Clb75.  I haven't had to, but that may be what I will have to do in the future.

1 hour ago, WinterSown said:

That is a fast and super easy fix!  Turn commenting off. You don't have to have people make comments, you control that aspect. You can project yourself to the public and not be afflicted by other people's call for attention. Trolls are never about you--they are ALWAYS about themselves--so without the capacity for them to ire you they go get their jollies stomping around on some other person's page. Turn off comments in the settings and don't give them a venue to misbehave on your pages. Remember the old saying 'Don't let the ******** get you down?' Well, it's the internet age. Don't let the trolls stop you from singing your song as loudly and proudly as you want. Give 'em ****.

 

I don't know that I would feel heard if there was no interaction with others.  I think I would still feel like I'm talking to the wind. 

If I can get on a working antidepressant, I will be able to deal with trolls.  I just can't do it when I'm feeling fragile.

I felt like I could take on the world when I was on 50 mg of Pristiq.  Unfortunately, I had to go down to 25 mg because Pristiq aggravates my heart rate and BP problems.   I need to get on something else, but that's another problem for another thread.  

I know what you mean.  I feel like putting in earplugs sometimes, but that only makes the ringing in my ears louder.

I've also noticed that strong tastes and smells can be too much for me as well.

Someone mentioned the birds.  I hate the sound of the birds chirping right next to my window.  And the sound of lawn mowers.  Those are probably the sounds I hate most during the spring and summer.  In the winter it's the snow throwers (or even just the sound of people shoveling), and the squealing sound a belt on a car makes when it needs to be changed.

Does anyone have neuropathy and take an antidepressant?  If so, does it help your neuropathy at all?

My current antidepressant is an SNRI and helps with neuropathy somewhat.  But I need to change meds, and my next med may not be an SNRI.

I'm also wondering what could be done about my neuropathy if I start an antidepressant that doesn't help with that.

Any help would be greatly appreciated, as my POTS nurse practitioner is not answering my questions, and my psychiatrist is basically just a drug vendor.

Thanks in advance.

--Mistri

On 3/18/2018 at 12:20 PM, WinterSown said:

Tell other people.

Don't let this stop you. If the people you know won't listen then tell other folks. Turn your skill set into advocacy for others. Make a blog, a forum, a diary online, a youtube channel with a vlog, anything that is an expression of you that tells your story. People will find your work and link to you and say--"Here is someone just like me, I'm not alone." Everyone's voice matters. Personal relationships can be very complex and because of it people will be more or less responsive to your message. Yet others are willing to listen. Take your voice to them and in your own words, by your own way, and let them know you matter, your words matter and you are very real in what you feel and that you don't need anyone's validation on what you do towards healing. You are proceeding at a pace that is set forth by your doctors and they will change it when they feel you are ready but not before that point. 

 

 

Thanks, @WinterSown. 

I have thought about blogging or starting a YouTube channel.  I just don't know if I can deal with all the trolls.

Recently I have been watching one of my favorite YouTubers get torn down in the comments sections of her videos...over makeup.  And she's such a sweet person.  Trolls go after her because they know she is sensitive and they can get to her.  I don't want to make myself vulnerable and get torn down like she does.   I just don't think I can handle it right now. 

I have a longstanding history of depression and anxiety.  It was hard to get doctors to take me seriously when I was looking for my POTS diagnosis, but I kept pushing.  Most seemed eager to write my symptoms off as anxiety.   But I have over 30 years of experience with anxiety; I knew it wasn't anxiety.  I wound up keeping the weirder symptoms to myself and telling them only about the things I thought they could measure or see, because I knew they wouldn't believe me if I told them everything. 

Even my POTS specialist doesn't believe that I had a weird reaction to mestinon (feeling drugged), and her staff members have treated me like I am a head case when I have called with questions.  (I guess I could understand that more if I called there crying or hysterical, but I haven't.)  Apparently I'm supposed to know everything about POTS already, even though I was just diagnosed in December.  But I can't exactly change providers, because there is no one else around here who knows as much about POTS.

It would be easier to deal with the POTS if I didn't have depression and anxiety, but you can't choose your illnesses.  I'm sick and tired of doctors and family members not listening or not believing me.  Many family members have horrible advice to give out as well: "go for walks," "if your energy is low, drink coffee or take caffeine pills,"  or--my perennial favorite--"just try," or "try harder."   OMG, you're so right!!  Why didn't I think of that?     

I've been told that I'm very good at writing and communicating verbally, but so often I feel like I'm shouting at deaf people.  I can tell people how I feel, but no matter how articulate I am, I can't make them feel it. 

I can't even get them to listen. 

Pristiq (desvenlafaxine).  I know that's probably not your issue, but I wanted to put it here in case someone happens upon this thread and is on Pristiq.

I've also noticed that even decaf coffee can be a problem for me.  I miss coffee.

Avoid anesthesia?  What happens if you have to have anesthesia?

15 hours ago, Pistol said:

The Dysautonomia Project book explains a lot and is set up for you AND your physician as well as family members. You can get it on amazon or on thedysautonomiaproject.com website.

Thanks, @Pistol!!  That is one I will check into as well.  I wonder if doctors actually read the books their patients bring them.  I think maybe my primary care doc would, but not sure about that.  I highly doubt my family members would take it upon themselves to read any of the books either.  Kind of a bummer. 

20 hours ago, Steven said:

Hi Mistri,

Here is a link to a free ebook by Dr David Goldstein that you might find useful: https://neuroscience.nih.gov/publications/Principles of Autonomic Medicine v. 2.1.pdf

I also have some other text books. Some people would find them a bit more academic than they would like, and some of them are expensive if you can't find a cheaper second hand copy that delivers to your country, but here are some titles that you might like to look up. If you live in the US, and maybe in Canada, you would have a better chance of getting a cheaper copy of the more expensive ones on Amazon. I got one of my books second hand in 'Very Good' condition and the book that arrived is in very good condition, but many of the third party sellers on Amazon for that book didn't deliver to Australia.

Clinical Autonomic Disorders, edited by Phillip A. Low
Autonomic Neurology, by Eduardo E. Benarroch (with others)
Primer on the Autonomic Nervous System, edited by Robertson, Biaggioni, Burnstock, Low & Paton
Autonomic Disorders: A Case-Based Approach, by Paola Sandroni & Phillip A. Low

You can browse the beginnings of these books on Amazon, including detailed contents pages. If any of them look like what you're after and you have any further questions, I might be able to answer your questions.

If you're after something more like tips and advice for a general readership about managing and living with POTS/Dysautonomia, maybe someone else has some less-academic book suggestions for that.

Oh @Steven, you have no idea what a nerd I am.    I definitely appreciate a good academic read.   Admittedly, brain fog makes it a little harder to concentrate on what I'm reading than it used to be (and clinical depression doesn't help).   However, books that have been written for the general consumer often leave out some of the information.  It would be ideal to have an easy read as well as something more detailed for when I'm feeling studious. 

Thank you so much for the suggestions.  I am in the U.S., so it should be easier to obtain one or more of those books than it is for you.  I'm sorry your access to things like that is more limited.

11 hours ago, statesof said:

Hey Mistri, I have not gone over 30mgs, I tend to be pretty careful with meds just because my body seems to not tolerate higher doses. But its more based around if it helps or not; I notice on 30mg a different feeling in my head almost like you can feel a sense of pressure, not necessarily in a bad way, but I'm still careful with it.

I tend to be the same way with meds; I have a hard time tolerating the standard dose of some meds.  Not sure why that is, but others in my family say the same thing.

What are your recommendations?  I was just diagnosed in December, so I still don't know very much about my POTS, but I would like to learn more.  Which books have you found most helpful?

Thanks in advance.

--Mistri

That's really weird.  I've noticed my hands wrinkle up pretty quickly when I'm bathing and I was wondering why.  I used to be able to almost get through my shower or bath before that would happen, and now it happens within the first 5 or so minutes.

I'm pretty sure my sodium levels are out of whack though--due to a medication I'm on--so I guess that's why.

On 2/28/2018 at 4:44 PM, songcanary said:

I loved keeping fish.  Recently I downsized and did not take my tanks with me.  A former neighbor took them thank goodness.  But I had a male Betta that really was quite a sweet pet.  I wonder if you could do that for just awhile?  My Betta was easy to keep and was company.  I have had dysautonomia for many years and it got better for me in time.  So there is hope.  Take care.

Hi, @songcanary!!  I just saw this.  Was this for me?

I actually have a little 5 gallon tank I was keeping a betta in.  She died though, so the tank is running with no fish in it right now. 

I think a big part of what was soothing to me about keeping fish was the fact that I was problem-solving on all of my tanks each day.  There were always levels to measure, plants to prune, algae to scrape, etc.  It was something I got hooked on when I worked in pet stores. 

I worked at an aquarium store for 4 years, and I loved that job.  I got to do what I like to do, and lawyers and doctors, etc. would come in and ask my advice regarding how to take care of their 10-20 thousand dollar reef tanks.  It was nice.  I miss it.

Welcome, @vjester94!!

I tend to cycle through a similar set of symptoms each day.  Each day I take my temp and it's fine.  The fatigue hasn't been as bad since I corrected my vitamin D deficiency.  And I don't get much in the way of chest pain, but I used to get alarmingly-strong palpitations before I upped my salt intake.

I have gotten better at staying hydrated, salted and getting some physical activity in, and that has helped....for now.

I hope you will stay and check out the site.  I haven't been here long, but I've learned quite a bit.  And it helps to talk to people who understand what you're going through.  

7 hours ago, statesof said:

Yes I am still on mestinon, same dose 15mg; though I will double up on it if I have to go any major walking throughout a day. I found that after about 4-6 weeks my body got used to the mestinon and I felt the same as if I wasn't on it at all. If I double up on my meds I can tell that even after 4-5 days of doubling up it starts to be less effective. I think it has to do with the short halflife of mestinon, so I for my body at least, I don't know how well it will work as long term solution, that being said I'm still continuing to take it.

Have you gone above 30 mg?  I hear most people take 60 mg three times daily for POTS...or that is the goal, at least.  

I read one of Dr. Grubb's studies about it, and only 51% of the people who could tolerate the side effects found it helpful.  So I guess it's a coin toss.  

I was just thinking about this last night, because I sometimes wake up feeling like I'm going to pass out.  Led me to wonder if it's possible to "pass out" while you're sleeping.  The idea of passing out while you're sleeping sounds absurd, and it also sounds absurd that a so-called "postural" problem could lead to this while lying down...but as soon as I saw the title of this thread I thought, "yes!!"

Not sure precisely why this happens, but I get it too.

I had one for a few weeks last year.  It was annoying, and the electrode pad adhesive irritated my skin, even though I don't have any known skin allergies.  After it was over with, someone online told me they have pads for sensitive skin, so that's something to ask about if you feel the need.  I could take off the pads and bathe, then put a new set on when I got out and re-connect the leads.  It was not a big deal, just kind of a pain.

3 minutes ago, statesof said:

@Mistri_The_Squirrel Sorry just saw your post. So yes at the time, and still currently, I was on Verapamil and Amitriptyline.

I actually think the 'drug-like' side effects were just the Mestinon, and again I only started with 15mg so I'm sure if I started with 30 or 60 I would feel even more of the drug-like feeling. Now even if I increase to 30mg a day I no longer feel that. With my POTS brain it seems like the first week on any medication makes me feel weird; its like my brain is adjusting, and so I typically have to wait until the second week to see how the medication actually makes me feel.

 

Thank you for answering!!  I am still wondering what the deal is with me.  Judging by the reaction of my nurse practitioner's office--along with the lack of similar experiences reported here--I figured it wasn't a typical POTS response.  Many of my family members say they are sensitive to medications, but I have an aunt who says she is sensitive to meds and she did not feel drugged when she was put on Mestinon.  So I don't know what to think.  I was encouraged when you said that wore off.  You're still on Mestinon then?  If so, is it helping you?

On 3/5/2018 at 10:22 AM, bombsh3ll said:

it is really hard but I would limit the time and energy spent on/with people in your life who don't at least try to understand. 

I find directing people to online resources explaining the condition helpful. It is easier than trying to explain it myself and can seem more credible to people if on a medical/scientific website. Whether they bother to read it is a good indicator of their attitude and if they genuinely care for you. 

I have always been close to my dad, and he provides a lot of day to day practical help in my life. He can however be very insensitive, making comments like "why don't you go and have a game of badminton", "what about trying a hypnotist" & "you seem to just sit around a lot" and repeatedly asking my to explain my condition. Just when I think he has got it, he'll do something like shout at me for knocking his feet whilst desperately trying to pull out a kitchen stool to sit on to avoid a collapse. 

I think I probably should be more patient with my dad though, as I know I can be short tempered when I can barely function and he is preoccupied with very trivial concerns over his own health like a one day belly ache or his dentures not fitting properly. He is 77 and walks several miles a day, never having known barely a day's real illness in his life. He has bad varicose veins and a small asymptomatic aneurism, and I can see that I get EDS from his side, but it has never caused him any limitations. If I am honest it is probably partly because I am jealous.  If he makes an inappropriate or hurtful remark now, I try to ignore it rather than take the bait. 

I have never been that close to my mum, but she has dealt with my illness a lot better. She has never made an issue about me needing to use a wheelchair. 

Having a chronic illness has helped me learn what and who really matter in life, and I have become a lot better at asserting what I need and what I can and cannot do. 

I have wished many times that there was some way I could have people sample POTS for an hour or so, like a mega dose of furosemide or temporary bilateral carotid artery clamp 

 

 

Oh, yeah...I don't talk to my sister anymore.  Along with my POTS, I'm dealing with some pretty severe anxiety and depression.  And I know my antidepressant (Pristiq) is aggravating my POTS symptoms, but the degree of anxiety and depression I have is too great to abandon the medication.  (I do have to talk to my psychiatrist about some sort of change in the medication, but he is on vacation for another 10 days and has no one on call for him. ) I had to go down to 25 mg because of my POTS, and 25 mg is not enough to keep me functional.  I can honestly say that the depression and anxiety have been worse than the POTS for me.  When I was doing better psychologically, I had hope that things could improve and I felt good about the simple pleasures in my day.  I had a positive attitude and was always able to think of things to be thankful for.  I am struggling so much now, and there has been no change in my situation other than the reduction in my antidepressant.  There is no earthly reason for me to be this depressed and anxious, so I know it is chemical.  (I have stress in my life, but my life is not that bad for me to be feeling this awful.)  I also have to go for a cortisol blood test, which may shed light on how bad I feel.

I think I will print out some info on POTS for my mom to read.  She reads the paper or random pieces of mail when she eats her cereal.  Maybe if I print a few things out, she will read them when she's eating her cereal.  Things are going pretty well between us now.  I would like to keep that going.  If she says stuff that's insensitive, I will have to do my best to either ignore it or calmly explain what is going on with my POTS or anxiety that is causing me to not function well.

Even if my sister experienced what it's like to feel how I feel for a week, it wouldn't change anything.   She is determined to think of me as a piece of garbage.  She works a lot of hours and has a lot of stress in her life, and I think her anger sustains her.  When I was angry all the time, I felt more powerful, more in control and more energized.  I'm wondering if the same is true for her.  Whatever the case is, I can't do anything about it.  I just have to stay away from her.  

On 3/3/2018 at 12:42 PM, Lainy said:

How do you all deal with comments from close family telling you you're just lazy, not trying hard enough, or calling you a "shut-in" ? 

That would be my sister.  According to her, I'm a burden (even though she hasn't done a thing to help me, so I'm not sure why she thinks she has a right to offer her opinion).  

I'm thankful that my mother was in the room when I had my tilt.  If she hadn't been, I doubt she would believe that there is anything physically wrong with me.

My mother has been really supportive lately, and it has surprised me.  Neither of us speak to my sister much because of the way my sister criticizes us about things that aren't her business.

Last week my sister sent me a series of text messages telling me what a selfish piece of **** I am.  I'm just trying to survive.  I have been for a long time.  I don't plan on having a relationship with her anymore.