zerohours000

3 minutes ago, zerohours000 said:

@WinterSown I have a question.  I decided to push myself today.  It’s 95 degrees out.  I decided to play 5x5 basketball...And if I passed out I passed out—-c’est la vie.  I figured I was around people, around fluids, and literally an ER up the road.  So I played full court to 21 (with a break at 12 points for each team) and I was perspiring normally, my legs, I could tell, were not fully under me, and my left hand was tremulous, I’d say.  I decided to see what my threshold was and I guess it’s a lot.  Because I’m drenched, not remotely tired, despite running with kids 15-22, and scoring 9 of our 19 points. This is not bragging or to trigger anyone who cannot do so much, so please forgive me in advance, as I know many are struggling just to do basic stuff.  But it got me thinking.  And here is my question: Did I decondition myself the past 4 months? Both mentally and physiologically? And this causing a negative feedback loop: feel sick> rest (out of fear or depression  or perceived weakness > feel weak (from not doing normal daily activity) > feel sick (physiologically and mentally at a lower threshold)...Repeat.  I still think I have yet to be explained malady.  But this was a good sign relative to how I’ve been feeling and behaving.  I’m sure I’ll pay for it later.  But maybe I need to do this more often.   Not everyday but at least while I can!  I’m proud of all of you. And I feel awful I come on here and complain but can still play 5x5 basketball in 95 degree weather.  I want to attribute it all to the gabapentin but maybe because I was told so early on I was sick, and then told to rest, but also somatically perseverated, that it did a number on me.  I was honestly surprised by today.  Most “normal” I’ve felt in a while.  Like 80% I’d say.  

@WinterSown I have a question.  I decided to push myself today.  It’s 95 degrees out.  I decided to play 5x5 basketball...And if I passed out I passed out—-c’est la vie.  I figured I was around people, around fluids, and literally an ER up the road.  So I played full court to 21 (with a break at 12 points for each team) and I was perspiring normally, my legs, so could tell, were not fully under me, and my left hand was tremulous, I’d say.  I decided to see what my threshold was and I guess it’s a lot.  Because I’m drenched, not remotely tired, despite running with kids 15-22, and scoring 9 of our 19 points. This is not bragging or to trigger anyone who cannot do so much, so please forgive me in advance, as I know many are struggling just to do basic stuff.  But it got me thinking.  And here is my question: Did I decondition myself the past 4 months? Both mentally and physiologically? And this causing a negative feedback loop: feel sick> rest (out of fear or depression  or perceived weakness > feel weak (from not doing normal daily activity) > feel sick (physiologically and mentally at a lower threshold)...Repeat.  I still think I have yet to be explained malady.  But this was a good sign relative to how I’ve been feeling and behaving.  I’m sure I’ll pay for it later.  But maybe I need to do this more often.   Not everyday but at least while I can!  I’m proud of all of you. And I feel awful I come on here and complain but can still play 5x5 basketball in 95 degree weather.  I want to attribute it all to the gabapentin but maybe because I was told so early on I was sick, and then told to rest, but also somaticalky perseverated, that it did a number on me.  I was honestly surprised by today.  Most “normal” I’ve felt in a while.  Like 80% I’d say.  

42 minutes ago, TCP said:

That's interesting - Thanks for posting! I have small fibre neuropathy all over my body and head. 

No worries.  I hope they have some breakthroughs soon.  Gene editing in Boston is a thriving business.  Still a while away from clinical trials but if you have hereditary or genetic issues, it could be the next step in therapy (I think what they do is try to extract stem cell, edit them, and inject them into the body at the cellular level to regrow damaged or dysfunctioning cells).  Someone can correct me on that but I think that’s one of the ways they do it.  Like, if they ever figure out a way to slow telemere degeneration, it could slow down or reverse aging itself.  We’re close in spirit but far away ethically and technologically.  But it gives me hope. : )

3 minutes ago, Alex D. said:

Stay strong, it gets better.  Positive attitude, meditation, medication, accupuncture and exercise. My process!

Thanks.  I walked today but it’s so hot here.  I just prefer my A/C room.  Maybe I’ll do some mediation now.  Lately I’ve been doing progressive muscle relaxation.  I like it because someone is talking and it obstructs my inner monologue

26 minutes ago, Alex D. said:

Gabapentin works for me, only side effect is a little sleepiness.  So I took at bedtime.   Ok also tried Lyrica.  Gabapentin seemed to work better for me.

I get sleepy too, which is good, because I hadn’t felt drowsy in over 4 months.   I’m just hoping that they are just side effects and not something else developing (I’m a worrier, if you couldn’t tell). 

I got uninterrupted sleep for the first time in a long time.  So hopefully the pros outweigh the cons.  I’ve read reviews online.  Some swear by it...and some swear about it.

Best,

Zer0

5 minutes ago, Pistol said:

Anytime you develop side effects you should first consult the accompanying info sheet that came with your med. Some side effects are less serious than others. For any questions about new meds I always refer to my pharmacist with specific symptoms or questions since they will be able to tell you if it is safe to continue taking the med. Then you also should always consult your doctor. But keep in mind - most meds have some side effects and your doctor prescribes them because he feels the benefit outweighs the risk. Also keep in mind that many meds take a while for your body to adjust to them, so many side effects disappear if you keep taking them. I am on meds that give me side effects but I would rather live with them than with the symptoms they were prescribed for. Good luck! 

Thanks.  That was my plan too: read sheet; call pharmacy; update doctor.  Honestly I might just take this at night instead of all day.  I couldn’t believe I got 5.5 hours of relatively restful sleep.  So I’ll start there.  Thanks as always.

9 minutes ago, KiminOrlando said:

I use gabapentin. When you say elevated HR and BP, what levels? Were they standing, sitting or lying down? Do you have a BP monitor that can also detect heartbeat irregularities or do you just feel it?

They were all over the place.  HR never got over 90 sitting or standing. But BP was once 93/70 sitting; then like 140/80 standing.  Then once 140/80 sitting and 110/70 standing.  I just feel the irregularities.  

Hi all.  I was prescribed gabapentin for burning pains in body.  It has helped but then noticed I was having elevated HR, BP, and mild irregular beat.  However, I also got the longest continuous sleep I’ve had in maybe four months.  (A whopping 5.5 hours).  The HR/BP was scary because I thought “Here we go; I’m developing POTS.”  

Should I continue taking this?  Speak to my doctor?  Pharmacist?  Anyone else have poor, good, or mixed experiences with the off-label used of gabapentin?

Thank you,

Zero

43 minutes ago, yogini said:

those symptoms Can occur with many conditions including MSA or dysautonomia, but the hallmark symptoms of dysautonomia are marked positional changes in HR and/or BP  .  

@yoginiWell.  I hope you're right.  My new PCP is a specialists in POTS, incidentally.  We had a long discussion.  I'm not sure if he thinks I have dysautonomia either.  All I can say is that they're now running ANA tests, a panel for Sjogen's (which I'm not too sure about tbh), the standard stuff (Magnesium, Phosphate, Protein, etc), Hep C Antibody, HIV 1 & 2; Thyroxine; etc etc.  

I think they're also running b12 --- just to be sage

RPR for syphilis (because this all started as a flu then a rash)  I mean, I don't know fully how syphilis presents, but I know that I didn't have any sores, and people who have syphilis are not having the symptoms I"m having right now, nor have I ever read about them in such context.  The rash fits only if you exclude everything else, which would make for poor science and a poor assumption on any doctor's part.  

I will be perfectly honest, however, because at this point I have nothing to lose.  This all started after a tryst with someone I met online.  She was sick, incidentally, with like a flu, and she does have a child who I believe was also sick at the time, so I have read that you can activate autoimmune diseases through contracting things like other non STI kinds of herpes, like mono or EPV (which everyone essentially has in their system anyways).  So I'm not sure what to think.  I don't like doing all this investigative work.  I've learned a lot though, as I'm sure you all have.  My doctors persistently ask me if I work in the medical field and I keep telling them I'm just a common idiot who can read.  Some doctors don't like this because it challenges them, but, why did they get into medicine if not to be challenged?  It would be freaking easy if everyone was healthy.  We wouldn't need them if everyone was easy and health was simplistic.  So they should appreciate many ambient minds working at once to solve a very large and very unknowable thing like the human body and health in general, which we still have a large absence of human knowledge in --- much like we know something about the Universe but still so much we don't know about its internal workings.  

If anyone has any more info --- please let me know.  

1 hour ago, AB+72 said:

My ears always ring.  And when I think about it, it gets worse.  So thank you.  LOL.  I typically can just not focus on it, I've had it for so long.  It's one of the least annoying symptoms for me.  I hope it stays that way. 

I used to.   But it’s back with force. Think the nerve is damaged.

5 hours ago, MomtoGiuliana said:

So interesting about the voices as falling asleep.  I was diagnosed with low B12 a few months ago and have been on treatment for that.  One of the symptoms I was having for awhile, along with severe relapse of POTS, was that same thing happening to me as I was falling asleep.  Distinctly feeling like I was hearing voices--also seeing faces or figures.  It was very disconcerting--almost like hallucination--but it was only occurring at night as I was falling asleep.  Which was making it very difficult to actually fall asleep.  I know you said you are having trouble sleeping in general. 

I also had worsening of tinnitus.  The tinnitus is improved a lot and I am not thankfully hearing voices as I fall asleep these days!

It's pretty awful.  I suspect I'm vit b12 deficient, but not sure if it's just I am or due to something else.  Again, my neurologist was so vague that she didn't make a distinction between "autonomic difficulties" and "dysautonomia" that she said I didn't have.  If there's loud enough other noises it's drowned out.  But sleeping, it 's another ball of wax.  I did heard b12 deficiency can cause dysautonomia.  

3 hours ago, Pistol said:

@zerohours000 - if you have symptoms of dysautonomia but you consistently test negative for all dysautonomia ( I am assuming you have according to your posts ) then it might be better to take a different approach. Maybe the symptoms you display have a different origin? Have you tried any of the medications commonly prescribed for your symptoms? Have you looked into vitamin deficiencies? Are you leading a healthy life style ( exercising, eating healthy - I know you used to be a vegetarian - do you have a healthy support system of people that encourage you and help you? I know that for me being able to exercise daily, even in ever so small amounts, helped my sleep hygiene greatly. 

Well, by negative, they only ran the one test --- the TTT.  But there are other tests they could've ran, I suppose.  I am already Vit D deficient.  I was taking he 50000 units of it once a week for three months.  But I think I'm now out of those.  As far as b12, I was vegetarian for about 2 years.  And, I'm not sure if you have this, but my nails present as someone with severe vitamin deficiencies: they're red at the top, I've lost those "half moons" near the cuticles, and, yeah, they're awful looking.  I mean, I could of course just have something --- like dysautonomia or something else --- that is causing the malabsorption.  What else could it be, if not dysautonomia?  Is it because I don't have the heart issues?  Because I literally always measure between 120-130/70-80 BP when standing sitting and between 70-80 HR when standing or sitting.  I had low pressure on perhaps one day at the neurologists but have not had the issue since.  Perhaps that was a flare in of itself?  Again, I don't know.  There was one day where I know I had shaking but had V8 and it went away shortly thereafter.  I could've been dehydrated the whole time as well.  I was already leading a healthy lifestyle (I thought) with vegetarian lifestyle.  I had lost 90 lbs doing so.  I felt very good.  I was getting a lot of exercise beforehand too.  I was a teaching assistant/job coach and was always taking students all around Boston for jobs and interviews.  I must've walked 20 miles a week.  I have not, however, looked into all vitamin deficiencies.  I read here that sometimes anemia can be either causing or mimicking dysautonomia.  http://b12patch.com/blog/dysautonomia-could-it-be-pernicious-anemia/  But I don't hold out a lot of hope that it's "just" b12 deficiency.  If anything, it's more like autoimmune + the deficiency + autonomic disorder.  Why don't you think I have dysautonomia?  What else would my symptoms present as?  

On 7/1/2018 at 4:20 PM, StayAtHomeMom said:

I found an office job that works with me and my awful days. That helps me get up and go. I take meds (metoperlol and midodrine) that help when I feel bad. And bought a Garmin HR to live monitor. If my HR is not way high I push through it. If it is too high I lay down. I think avoiding triggers helps too. I think finding them is hard and it different for everyone but once you find them you learn to avoid. 

At least one of my triggers is social media for sure.  It’s a nonstop infomercial of “normal living.”  Can’t do it.  I get too d*** sad remembering it.

2 hours ago, Jan said:

Even if you were perfectly healthy, you would lose the ability to walk, stand and sit up if you stay in bed.  That is part of the reason they get people walking right after surgery.  

My suggestion is to get out of bed every day.  Take a shower and get dressed even if you need assistance.  Lay on the couch instead of bed.  Elevate your head.  A recliner is good.  A doctor at the Mayo told me I had to "retrain" my body to be upright.  Anything up right is good.  When I started on my recumbent bike, I had it on low tension and could only do a couple of minutes at first and increased it very slowly.  You could try one minute, a number of times a day.   I had a PT who designed exercises I could do lying on my back. I had some weights I put on my ankles after I was able to do the exercises with no weights.  Stand up right for as long as you can stand it and then add a minute each day.  Or 30 seconds if that is all you can add.  Stand next to your bed so you can fall over if you have to. Maybe keep a journal so you can see your progress because it is hard to notice. Once you can start to walk, walk a few more steps each day. 

I told the Mayo doctor I could manage my dizziness by only walking short distances at home holding on to furniture and not going any where.  She told me that was not a good plan.  She said I had to push my self or I would not get better.   

I went from bed bound to going out, driving, walking, being able to take care of myself.  I had young kids at the time I was bed bound and HAD to help them.  I would crawl if I had to.  I believe if I hadn't had my kids, I would have crawled into bed, pulled the covers over my head and never gotten out.  I really do understand how hard it is to get out of bed when you feel so bad. 

Most important is you need hope.  The body is an amazing thing.  You can train it.  You are a team. Cheer yourself on.  Believe that you can get better.   I have known many people with POTS who are 95%.  Those people aren't on message boards because they are back to living their lives. 

 

 

 

 

 

What about those without POTS?  What do you suggest?  Because at times, crazy as it sounds, I wish I did have it.  If only because there’s more out there in terms of mitigating the symptoms, strategies, or even medicine, frankly.  

2 hours ago, StayAtHomeMom said:

It is the most reliable. But you also have to have a doctor that can interpret the results correctly. 

Autoimmune, lyme's, thyroid, vitamin deficiencies, hormone imbalances, electrolyte imbalances, structural defects, pulmonary hypertension, and I am sure there are more I just can't think of them. 

I see.  Well I’ll bring them up to my doctor tomorrow.  Thx

40 minutes ago, StayAtHomeMom said:

I agree with Pistol. Try to get a tilt table. I had a poor man's done 3 different times from 2 different doctors and it came up "fine." They were testing too quickly as well. I have had 2 tilt tables and both showed I had POTS. No fainting but definitely exhausting. Tilt table test is the best way to rule out autonomic dysfunction. Other diseases and disorders that are "more common" can have similar symptoms. So best to rule out everything you can. 

By the way just as a clarification that I personally didn't know. Heart palpitations are not just skipping beats. It is anytime you are aware of your heart rate. Fast, slow, hard, skipping. All of it. I thought it was only skipping until my second cardiologist explained it better. 

Question: can a TTT actually rule out autonomic dysfunction?  I had one and I was definitely negative for POTS but definitely have neuropathy going on.  What diseases and disorders could have similar symptoms?  Because my Neuro and PCP both said no to Dysautonomia.  But didn’t say anything else.  Thx

Came across this.  Not sure if it looks promising or delusional:

https://www.fiercebiotech.com/research/peripheral-neuropathy-could-be-reversed-by-fda-approved-class-drugs

2 minutes ago, Pistol said:

@zerohours000 - did you not mention in one of your posts that you tested negative for dysautonomia? Why do you think you will be sick for the rest of your life? Many people have dysautonomia and lead a normal and productive life, as long as they take precautions. And if you have not been diagnosed with anything then you very well may get perfectly well - whether with or without treatment?

@pistol I'm not sure how one tests negative for dysautonomia.  As there's no genetic markers for it.  What I posted was that my neurologist did a TTT and said I didn't have it.  I think I'll be sick for the rest of my life because my symptoms get worse by the day and week.  Whether it's the new burning sensations I have in my hands or feet to the ringing in my ears.  I'm just really unhopeful because I feel so poorly and I've lost all joy in my life.  The lack of restorative sleep has also ravaged me over the past 4 months.  Without sleep, we can't recover from anything, regardless of whether this is dysautonomia or not.  And of course the uncertainty of this all (I know there are no certainties in life, but at least health is a false sense of certainty for many) has really messed me up mentally, as I've lost that one constant.  I mean, I was vegetarian, in pretty good shape, and able to do a lot.  Now I barely function.  I"m not bedridden --- though I sometimes don't want to leave bed --- but this thing is whipping my butt.  

I’d like to know how you deal with it all, especially knowing you’ll never be well again?  I was never even that much of a social person but I did occasionally do things, go places, look forward to things.  Now each day seems like a long prison sentence.  And life seems very dull and without much joy.  Sorry to complain, or bring the mood down, or make it about me, but I’m only 4 months into this and I’m sick and tired of it and just want it to go away...

11 minutes ago, Pistol said:

Hi - my family tree is contaminated with POTS ( mother, 2 sisters, 2 nieces and myself have it ). I id not become severely symptomatic until I was 42 but in retrospect I had many POTS symptoms since childhood. I was wondering if any of you had symptoms when you were young? My symptoms were: syncope ( was blamed on teenagerism !!! ), dizziness, low BP, tachycardia, difficulty concentrating, very hyper and annoyingly energetic ( ADHD ?), GI issues , craving salt ( as child I drank soy sauce from the bottle … ), Vit B12 deficiency ( need shots since age 16 ), anemia, Raynaud's syndrome of feet … I think that's all. These symptoms all sound very much like dysautonomia but I coped with them all of my life until - as I said - I was 42. My sisters and nieces all had similar symptoms and now  have POTS . … Has any of you had symptoms growing up?

I don’t have POTS or other postural or heart issues, but I never had one symptom of anything before 4 months ago.  Which is why this has been so hard: a total 360 in life and outlook.  I was by no mean happy go lucky, but never had health issues on this magnitude before.  Now I spend me days isolated and searching for answers I know will just make me feel worse — because there ultimately no cure or full recovery; just stuff of a chronic nature.  Very daunting.  Sorry your family is going through all that.  Must be difficult.  In my family it’s really just been me to get the worst luck—all through my life.  It seemed to fall on me.  

22 minutes ago, Scout said:

Hi there,

I'm so sorry to hear you're having tinnitus. I have a problem with this myself, and it definitely coincides with my dysautonomia symptoms. 

Have you seen an ear nose and throat doctor? 

I get pulsatile tinnitus in my left ear (the wooshing sound in time with my heart beat) and am currently having that investigated further. I also have a near permanent ringing in my other ear, which differs in intensity from day to day. 

I'm not sure about the voices, but do they only happen when you're falling asleep? I sometimes hear things when I'm in a half-dream state. 

I have not seen an ENT yet.  I’m in the process of having to re-see new PCPs, specialists, etc; ie—people who will take my symptoms seriously.

Thr voice or words are only upon falling asleep or in bed at night.  The ringing is pretty much constant at this point unless I put on both a fan and white noise.  In terms of the half-dream state—- I know exactly what you’re talking about.  I will hear like the trailing off of something.  Very weird.  

I want answer but I’m afraid they’re all just be bad ones.

On 6/15/2018 at 6:16 PM, Bluebonnet08 said:

I would just say, don't give up!  I've had this condition for 13 years and it was a long time before I got a proper diagnosis.  At first I was diagnosed with panic attacks, even though I literally collapsed on the floor of an emergency room!   What many of us need are problem solvers- someone who can put the pieces of everything together.  From my personal experience, I've found that many doctors are able or willing to do this, so it makes for a very frustrating time... 

I don't know if you are in the US, but an autonomic center is a good place to start.  There are many types of dyautonomia, not just POTS.  They will also look for things that frequently go with autonomic conditions like CFS, small fiber neuropathy, and many autoimmune conditions.  I had a good experience at Sentara in Norfolk, Va and I plan to go to Vanderbilt this fall.

Secondly, have you tried a functional medicine doctor?  I've had some help working with one.  Lastly, there is a site called "crowdmed" where people can submit "medical mysteries" and people work to try to solve your case.  I tried it last year.  It wasn't very helpful for me, but I spoke to someone that said it helped them.  It could be worth looking into.  

Good luck.. sometimes I feel like it's a long journey to try to sort out a complicated medical condition, but I think it's worth it to keep fighting for a proper diagnosis and root cause.  I am still looking for mine.  

@Bluebonnet08Do you ever get the burning sensations in weird spots?  Like ears, throat, or anus?  Sorry if that’s too personal a question.

Thanks

On 5/30/2018 at 12:40 AM, haugr said:

It's hard to describe, but it kind of feels like a cross between a dull burning sensation and that feeling that you get when a limb falls asleep.  The burning and the tingling have swings in intensity too.

@haugrI think I just started having it a few days ago for real: it felt like when you sit on your leg and it falls asleep + burning.  It comes and goes but I expect it to progress at some point.  As I have it seemingly in the oddest places.  Like, I’m pretty sure I had it in my throat yesterday.  And can feel the burning on my anus sometimes.  Even tip of genitals.  

I just started having tinnitus.  I have had it before in one ear but this is profoundly different than when I had it some 2 years ago and abated.  2 years ago I had auditory tests and basically it was from some bent hairs that weren’t giving feedback.  I basically reduced my stress, listened to noise that drowned it out, and basically not thinking about it made it “go away.”  Or fade into other noises.

But as of 2-3 days ago, I hear a high pitcher whine, almost radio like frequency in both ears.  With occasional “boop,” as if sonar.  The disturbing part is I will hear words or phrases occasionally.  Like the last one I heard was “best of luck” in the voice of this person I sometimes listen to to fall asleep.

Very bizarre.  This all coincided with the same burning I’ve gotten in my limbs and hands happened in my ears.  So is it possible to get neuropathy in yours ears that damaged auditory nerves?  That seems to be the case.  Because I didn’t have tinnitus in the last 2 years and 4 months.  Then this autonomic stuff happened and everything changed.

The only positive is I was able to fall asleep before midnight for the first time in a long time last night.  I just told myself I was going to go to bed tonight.  Still.  All this is very worrying, since the tinnitus I read about on here is usually relate to BP not neuropathy or nerve damage.

Sigh.

4 hours ago, StayAtHomeMom said:

Maybe lyme's? Has that been checked?

I tested negative but I’ve been reading that sometimes the basic tests just don’t pick it up.  I don’t know.