At A Loss About What To Do Next.

[gjensen]

I have a problem, and I know that I am not the only one.

I just can't place my presentation with anyone else's.

There is a lot of intelligent people on here, so I am going to mention some things going on and see if anyone else understands this.

I am convinced that I am not getting enough blood to my brain. It doesn't matter. If I stand up, sit up, whatever. My cheeks and lips go numb. I get dizzy and very sickly. I am 100% restricted to the bed and in a single position. It takes me an hour to recover from going to the bathroom.

I get low pressures standing up, and confirmed by two TTTs. But, soon after it gets high and sometimes very high. And still, I get the heavy chest pains and all of the symptoms of the low blood pressure.

If I stay up for just a short length of time, and even after I lay back down . . . .my arms and legs get weak. I still have the fascial symptoms. My head pounds. Then I get these fading in and out spells which leads to what seams to be a total shut down. Everything goes dark. I am unable to breath. Me esophagus spasms and locks up. And of course my heart starts pounding. Not just fast, but hard. My blood pressure gets up around 180/120. Sometimes a little higher or lower.

About the time I think I need to get help, it starts to ease. I do not understand these spells.

And I have to be able to get out of bed without all of his drama. A son had a solo in his chorus concert tonight. Guess who was at home with his heart racing at 180bpm.

I cannot lay on my sides. At all. My breathing gets labored. My heart starts acting up. And oddly something at the base of my sternum starts throbbing. Often my other side begins to hurt.

If I sit up, and especially if I lean forward. My blood pressure really climbs and will until I relent. All the time I am getting the head symptoms. I am convinced that I can give myself a stroke, just my sitting up and leaning forward. I have checked it time and again and it does not quit climbing until I chicken out.

Also, this act causes me to reflux. I get the acid in my mouth 100% of the time. With this I always get a sharp pain in my right side. In the middle of my ribs. A sharp pain.

Can anyone relate with any of this?

[davecom]

gjensen - that sounds awful. Sounds a little like how things were when I was at my worst, and they have gotten at least somewhat better since then, but it just sounds absolutely awful. It sounded in other threads like you have good doctors. Do they understand the severity of the situation? You need to make it perfectly clear to them if not, while still being polite.

Unfortunately w/ POTS (if that is what you have) inactivity can be part of a downward spiral. Are they considering putting you on some kind of med so you can at least start getting into some sort of walking/exercise routine or some physical therapy?

It must seem pretty dire right now. Without knowing what your underlying medical condition is, it's hard to say if your situation is similar to what happened to me - but I think you should have hope that things can get better.

[gjensen]

Thank you again Dave.

I do have a good doctor. I do like him. I like Duke. I have started messaging him trying to communicate what is happening. My gap is not having a local doctor to fill in the gaps. The local small town guys do not seam to want to touch me with a ten foot pole. They just do not know. I do not know. I have put myself in a bit of a bind.

[sue1234]

It kind of makes me wonder if when you get upright, your cranium sinks and presses vessels or nerves? Maybe? You asked for ideas! Have you had even a lying MRI with contrast?

[Dustbunni]

Have you had a Daxor blood volume test done? Personally, my symptoms get that extreme and erratic when my blood volume reaches low levels. This can happen no matter how much liquid I drink. What clued us in was how much better I'd feel after going to the ER (at least for a day or two), even though the only thing they ever did was give me saline. Granted, it took years before we made this connection, but now it's a life saver.

[looneymom]

It might help your doctors if you kept a daily diary and took some videos of what is happening. This helped our doctors see what was really going on. A video can be worth a thousand words. I email the cardiologist weekly and called him weekly when the symptoms were at their worst. When my son was at his worse, we thought his condition may have been going towards something called Pure Autonomic Failure. There are some post on Dinet about this illness.

Exercise does help with circulation. There are exercises that can be done in bed like leg lifts and arm raises. Maybe try a set of 2-5 per day. My son had to start at that level when he was bedbound. His story is on a blog called survivingpots.com. This blog is sad and I try to write what I can so people can see that POTS for Tyler is a rollar coaster ride at this time.

Would it be possible for a physical therapist or occupationl therapist to come to your home? Some insurances will pay for this and it can be very helpful. When Tyler's tremors stop, we plan to do this with Tyler again.

The other thing that might help is trying to retrain your body to sit up but learning to relax at the same time. Like sitting up in a recliner and doing deep breathing exercises for 5 minutes and then laying back down for an hour or so and then try to sit up for a little longer. This is something I had to do with my son in the very beginning.

Rachel

[gjensen]

I have had an mri. The brain mri did not show anything at all. Which is good. A lot has changed since then, but it was not that long ago.

I have not had a blood volume test. I would like to have one done. I have considered that to. I had lost a lot of weight, but I have been gaining it back little by little. I will ask my cardiologist (or try to), to get me in for that. If that could make a difference, that would be great. Any improvement would be great.

I have some exercises that my sister put together for me. She owns a gym, so I figured she could come up with some that I could do. My goal was to be at a target weight and start Monday. I do not think that I will be quite there, but close enough.

I do not think that this is de conditioning that is exaggerating this. Maybe I am wrong. I am still relatively toned. I lost some muscle mass, but what I have is tight?

I am starting to suspect that POTS is part of something more with me. I want Sjogren's to be explored more fully. I have had a swallowing problem, and I just figured out that my swallowing problem is my parotid gland. What saliva it is secreting is very thick and stringy.

I am starting to wonder about cerebral vasculitis (sp). I am also wondering since there are mechanisms that regulate blood flow to the brain, if they have failed.

Otherwise I have not had an autonomic failure. I still have my blood pressure and tachycardia response. It is trying. lol. Not failed yet. Nock on wood.

[gjensen]

All of it is worse today. I think there is something else is going on. I am still restricted to the single position, but it is bad just laying here.

Sound sensitivity is bad.

Pressure/Pain is bad.

Dizzy, sickly.

Can't think.

My arms have gotten very weak.

Face is very hot, even to the touch, but no fever.

Can't even move my head without paying for it.

This is all just laying here. That is all I have done today.

Is this POTS?

[looneymom]

I will bump up some old post on other dieseases associated with POTS. Have you been checked for Autoimmune Autonomic Ganglionopathy, Mast Cell Activation Disease, or Paraneoplastic antibodies?

Rachel

[looneymom]

Another possibility may be the flu or a virus. My son's POTS symptoms increase whenever this happens. Be sure to keep the fluids and salts up. Chicken broth and snowcones with gatoraide help him.

[Dustbunni]

Snowcones with Gatoraide. I am going to have to remember that come summer. What a great idea. TY

gjenson, I'm sorry you're feeling this bad. Perhaps it's time to take a trip to the ER. When things get worse than your usual, it's better to be safe than sorry. If you hate hospitals like I do, I know it can be an emotionally tough call though. *Hugs*

[gjensen]

I am getting over myself. Still miserable. It is the darn head symptoms. The rest is small at this point. Got to figure out the head symptoms. The rest seam small compared to this awful sickly pressure in my head.

I went back through my tests. Goodness, there are many. Everything is negative or good, except two ANA tests where I test positive. One is a low positive, and the other is just positive or negative.

It looks like I am missing some more specific tests. Only one seams like a real possibility to me.

I have a low abnormal c protein test, and high (not especially high) sedimentation rate.

If I was not so symptomatic, I would dismiss those as "that is just me". There is enough there to say that something might be wrong, but not necessarily, and nothing in particular.

I suspect Sjogren's. I want to get specifically and thoroughly tested for it. I also want my head checked out more thoroughly.

Dustbunni, ths has bee bad enough at points where a "normal" person would be recommended to go to the ER. This little hospital doesn't know what to make of all of this. They can't help me. They cannot spell dysautonomia.

The last time I was there with crazy blood pressure and heart rate they tried to give me nitro. I have learned that me and nitro do not get along.

[radiohfan23]

I have got to say that this sounds an awful lot like me. Totally bed ridden, weak, dizzy, etc etc.

I was exercising when pots struck and have tried to keep at it but my body just cant take it anymore and i totally understand what you mean by deconditioning not being the cause. I recently got in touch with a home medical doctor who is wonderful because i can no longer get to the office without lying down the whole way. Things have just deteriorated despite my efforts to exercise.

I have a physical therapist come to my house twice a week but i always try too hard and about an hour later i really start to suffer.

I would say that movement no matter how small helps. At least in terms of mitigating some suffering.

I wanted to chime in because i am currently thinking there is some sort of neurotransmitter issues going on with me. Have you looked into dopamine/norepinphrine relationships at all? I am just getting into this more but symptoms wise an imbalance or synapse deficiency or problem may be at play with me. I never feel relaxed anymore despite being relatively happy and content.

So, just wanted to chime in in case this helps and to let u know that i know what you are going thru as so many of us unfortunately do.

Take care and i hope u find answers really soon!

Joe

[gofl1]

Have you seriously looked into a chiari malformation? This sounds similar to me and might be worth considering. Apparently a cervical mri won't necessarily detect it if you have already had one done. I hope you get some relief soon.

[gjensen]

You guys are great.

gofl1, I have had a neck MRI. I wondered about that before, but thought the MRI settled that.

Radiofan, really I am at a loss. I just do not know.

Right now, I feel fine physically neck down. Neck up I feel unbearably bad. I do not understand it.

[looneymom]

Glad you feel a little better. When the symptoms get worse, this can be scary for anyone. When you mention the neck and breathing issues, that is what sent my son to the hospital for 10 days. He had a stiff neck which was very scary and he would grasp for air sometimes and his chest area would shake. I was told this could be caused by an inflamed nerves in the chest or neck area. BTW he failed his pulmo test when he was in the hospital also.

When he gets sick with an upper respitory infection, sometimes I see this again and I know when this happens, my son needs to be seen by a doctor. Usually it's treated with a low dosage of predisone. My son cannot take this for no more than a week or it will make his vocal tic worse. Sorry I did not think of this earlier but with my son I know a virus can cause these problems. Take care and drink your fluids.

Rachel

[Dustbunni]

Gjensen, I completely understand about ignorant hospitals - or at least ignorant doctors in them. The first time I went to our local ER after moving here, we got sort of lucky. The ER doc admitted he was clueless and quietly warned us our local hospital and doctors would probably be unable to meet my needs. He felt I needed a larger group of trained specialists. Then he packed me into another ambulance and sent me to Vanderbilt's ER in Nashville. That was less lucky for us. Vanderbilt has quite a good reputation for POTS. In fact, it's their study along with a suggestion from my geneticist that convinced my primary to trial me on IV saline. However, Vanderbilt's ER was a nightmare experience that I have no desire to ever repeat..

Some time later I went to a new local doctor because I was doing so poorly. When I stood they were completely unable to get my blood pressure or peripheral pulse. It was the first time in over 10 years I was able to convince a doctor to test it while I was standing. They tried quite a few methods but got nothing. I've never seen a doctor and nurse look so scared. I admit, in a sick and twisted way I was amused by their shocked and fearful expressions. It was validating. I was less amused when they insisted I just earned a one-way ticket to the ER. I bawled when they said that. I knew the local hospital couldn't help and I wasn't going back to Vanderbilt's ER. They suggested I try St. Thomas in Nashville. I'm so thankful to them for that suggestion. That one trip to St. Thomas's ER is what got the ball finally rolling for me. They have some really caring people there. They didn't know what was wrong with me either at the time, but I've never been treated better. Heck, I cried there just because I wasn't used to being treated kindly. How sad is that?

Anyway, I am fairly certain we all have enough ER and doctor horror stories to fill a library. We go to them for help, but all too often we leave worse off because they beat us down with their ignorance and rob us of our self-esteem, confidence and faith in the medical community. What I'm now learning is that I can't let my fear of past experiences dictate my future. Also, I don't have to be their victim. It's my body. It's my life. I have the final say in what is done to me, and I don't have to be afraid to say no or point out to someone that their behavior towards me is less than helpful. This doesn't mean I have no fear now, but I'm slowly learning to take control of it and not be afraid to stand up for myself.

Why did I share all of this? I don't know for sure. I'm always so grateful when I read the experiences of others. Sometimes they just remind me I'm not alone, and other times they inspire me to keep going. I guess I hope my stories resonate with someone in similar circumstances and I can give back a little.

[AllAboutPeace]

I'm so sorry to hear that things are very bad for you right now...and I'm late to the conversation.

I, too, shared many of the same symptoms you are describing, when I first got sick (sudden onset). I felt like my body was in some kind of failure. I felt like it took every ounce of energy just to beat my heart and breathe. All I could do was lay in bed. I would wake up in a choke (apnea) often and felt like my body would forget to breathe sometimes while awake.

I couldn't lay flat on my back or on my left side. The laying flat would cause the breathing cessation problems and a 'tightening' type of feeling down in my throat area (just above breastbone). Laying on the left side brought discomfort, then pain if I remained. It just felt like something was just 'wrong' with my heart in that position. My echo showed some mitral valve regurgitation in that position, so I'm not sure if that's what I'm feeling (??). I never had an issue before Pots hit.

I've had the issue with the swallow/locking up, too. It's happened to me while sitting at the computer - I wasn't eating or drinking anything, just felt the urge to swallow. I started to swallow, but couldn't finish it - it just locked up. I then realized that I couldn't breathe either. I forced a cough which opened things up again. I never even told my docs about that because they already looked at me like I was an alien. I found that lots of people with dysautonomia had issues with swallowing, although I haven't heard anyone else talk about the locking up until now.

So, things were really bad and I was hospitalized for over a week. I would say the biggest thing that helped me out of that state was time (and lots of salt &water). The first 4-5 months were the worst. I have no idea if we are dealing with the same 'monster' or not, but I know my body forced me to stop everything and pay attention. Exercise is a tricky one when things are really bad - I wasn't able to do it all, but I moved as much as I could, when I could. The workout at the time was just brushing my teeth

As Looneymom suggested, I also found it helpful to keep a daily log of my symptoms/triggers, etc, because the progress was so slow that I might not have noticed the little improvements that were soo important psychologically.

IV saline was helpful for me, too. Some people have very good symptom improvement with it (albeit temporary), but even that is a good boost to get the blood back to where it needs to be. I printed out a study on Pots treatments/IV saline and took it with me on a trip to the ER and the attending doc had no problem giving it to me. I didn't have volume testing, but given how well I responded to saline, then later Florinef, the assumption is that it was low. If I could go back in time, I would have addressed volume issues much sooner.

Hoping you are able to find some relief...

[davecom]

There's no way it's "just" POTS. There's actually no such thing. POTS is just a syndrome that always has an underlying cause - most of the time that cause is never figured out, but we know in more than 50% of cases it's SFN (Mayo). Do they have any idea of what your small fiber neuropathy was caused by (I think you mentioned you have that in another thread)? Did you have a positive skin biopsy/sweat test?

With the high sedimentation rate, abnormal C-Reactive protein, and some positive ANAs, are they considering inflammation caused by some sort of autoimmune reaction? Did you have a virus preceding the onset? A lot of POTS cases are caused by freak autoimmune reactions to viruses (according to my neuro, a genetic susceptibility to a particular pathogen, not necessarily an autoimmune disease).

All of it is worse today. I think there is something else is going on. I am still restricted to the single position, but it is bad just laying here.

Sound sensitivity is bad.

Pressure/Pain is bad.

Dizzy, sickly.

Can't think.

My arms have gotten very weak.

Face is very hot, even to the touch, but no fever.

Can't even move my head without paying for it.

This is all just laying here. That is all I have done today.

Is this POTS?

[gjensen]

Neuropathy was confirmed by skin biopsy. Two out of four Qsweat test locations results were abnormal. One was a low response, and another no response. Two were normal.

A number of specific antibody tests were negative. There has been no specific tests for what I would guess to be most likely.

There may have been a bacterial or virus infection in the stomach/intestines, but I would not bet on it.

My original complaint was swallowing. I got caught up on the reflux train (ironicly I have it now, but not then). Then I ended up on PPIs, which did a number on my stomach. I did not tolerate them well. As I complained of no improvement, they prescribed larger and larger doses and stronger stuff. Eventually I figured out that the PPIs were no good for me and weaned myself off of them.

It took a long time before my stomach/intestines to settled down afterwards. I do wonder if I did not create an environment for the bad bacteria to get the upper hand. Who knows. I did have chronic diarrhea for months.

The swallowing was my first reason to start going to the doctor, and is still unresolved. I think that I finally figured it out. On an endoscope a doctor mentioned an interruption in the mucosa. I am not certain what that means, but I am guessing that it means an interruption in the mucus lining of my esophagus.

My main complaint with the swallowing was mucus. What I thought was mucus. I know now that it is abnormally thick saliva from my parotid gland. I did not know that then. This trouble swallowing led to weight loss, but I kept working. At work and at home. Building an addition at home, remodeling, keeping up with my bird project, gardens, orchard, etc. Working six days a week for a living. I lost 30lbs off of a 190lb 6' 2" frame.

I have had a chronic stuffy nose forever. I do not remember when the last time I had a runny nose. Just a dry stuffy nose. Along the way I have developed "cotton mouth". Never paid it a lot of attention, but I noticed it. It has came along with this and has not went away. Now I have on again and off again dry eyes, but can't say that is nor from medication. I have been off and on clonidine which can cause that.

In the beginning, I had breathing problems. Of course they were dismissed as anxiety, which I some cases did turn into anxiety like attacks. Trouble breathing for someone that never had the problem is unnerving.

And progressively the unexplained dizzy spells etc. Eventually I bought a BP monitor and started checking it according to symptoms. First I identified High blood Pressure sitting in certain positions. driving was giving more and more trouble.

I started to see heart rate spikes. Just here and there originally. Then they began to be more and more of an issue. This led me to the cardiologist and holter monitor. He caught the HR spikes to 180. No wonder I was feeling so bad. This led to the TTT etc.

Now I am at Duke. Which I feel good about.

I am concerned about the progression. This has not plateaued. The symptoms wax and wane, but there is a definite trend up.

Now did I dig this hole myself, or is there an autoimmune response going on that would be happening regardless of the recent history.

I cannot help but wonder with the parotid gland problem, the mucus interruption in the throat, the dry eyes, and dry mouth if this is not starting to look like Sjogren's. Not to mention lung pain, cloudy urine etc. Food sensitivities that I had never had before etc. I could go on and on. I do not think that my dysautonomia is primary.

All the while I cannot help but wonder if some of this has not gotten into my head. Anxiety has become a problem. Depression waxes and wanes. This is horrible stuff, and I feel for anyone having to go through this. It takes everything away. I do not mean this disrespectfully, but if losing my legs meant all of this going away, I would start cutting. I could adapt to that and keep moving.

[gjensen]

DustBunni, I have lost faith in medicine. I went forty years without a single problem, so I had no idea. Around here, if you have anything more than a tummy ache, you better get out of town.

I went to the ER once early on after blacking out on the highway. My left face and arm was numb. Heart was racing and pounding. I went to my GP which told me to go to the ER. So I reluctantly did. Of course I had settled down after waiting forever.

The doctor comes in and said that you are not having a stroke. He told me that without ever talking to me. He had looked at the chart, decided that it was anxiety, and came in to tell me that. I will not repeat what I told him as the alarms were going off. LOL. He kept looking at the monitor, and preceded to ask me not to take the leads off. I left with them asking me to stop. I had heard anxiety one to many times.

I have had a lot of doctors that would not want to see me again. Fortunately I have found a couple that I can relate with.

Peace, I get the swallowing/breathing thing all of the time. Sometimes all night. It is awful and frustrating. I have finally heard someone else have a similar complaint. Also the laying o your side. I have similar issues on both sides. Crazy to be restricted to lying in one position. First it was one side and now it is both sides.

I guarantee that I "forget" to breathe. That is my sleeping problem. Ever getting there to begin with.

And I need to shave. LOL. Shaving is an adventure right now.

Looneymoon, to not have these challenges yourself, you are very supportive. Your son is very very fortunate to have you while he is going through this.

[sue1234]

You mention thick spit. I've had that problem for a LONG time. I can tell you what mine is linked to: vitamin B12. I spent a few years with feeling like thick spit would occasionally make a "bubble" in my throat, and I would have to clear it or cough. Then, I would wake up at night feeling like my airway was closed off due to the same scenario. By coincidence, my doctor at the time had me begin B12 injections to help with energy. Lo and behold the thick spit went away. Over the years, if I am lazy and a few months late getting my injection, I start getting the thick spit issue again. An injection makes it go away within a couple of days.

I am not positive why this is related, but all I could find was there is such a thing as an "esophageal web" related to iron deficiency, but realize B12 causes a different deficiency. So, I can't explain it, but definitely know there is a cause-and-effect for me.

Also, I occasionally get what I term "esophageal spasms", meaning for me, my throat wants to unexpectedly and involuntarily swallow. I have found over the years that if I increase my magnesium past a certain point, this happens. Once this happens, I have to take calcium until it stops. My gi system does NOT like calcium, so I only take like 500 mg. total calcium to make it stop.

These are things I've noticed happen in me over the last 15 years. I can't explain them, but definitely know what causes and fixes them.

[gjensen]

I have tested high on all of the B vitamins. if I was deficient, I am not now.

Now the magnesium idea is interesting because I test high for magnesium. Calcium to though. Now I have never been tested for D.

[sue1234]

I have tested high for magnesium also, back before I began taking any magnesium. So have no clue why I would have had that high.

All of my B vitamins are always high, too.

[davecom]

Hey gjensen,

I just wanted to write to say I can relate to a lot of your journey and can you're not alone. I also am 6'2. I also was almost 190 pounds before this started and then went down to 158. I also had tons of swallowing pain (and still do on and off). I also had extreme dry mouth. I never quite hit 180, but I was in the 150s heart rate wise. I also was put on PPIs that did a number on me (causing migraines which I never had had before - and I wonder still if contributed to the nerve damage - there have been recent studies linking them to changes in nitrous oxide and blood vessel constriction). I also developed acid reflux which I had never had before as a result of this. etc etc - the whole story every bit of it I can relate to in some way - from being quite active right before to gastrointestinal illness when it all started and never quite resolving, to being misdiagnosed initially by ****** doctors.

I also lost my faith in most of medicine. But you can't beat yourself up about what happened or what continues to happen. You were put in an impossible situation with a failing body that didn't equip you with the tools to fight back. There is no way you caused it - it was almost certainly instigated by a pathogen. What that pathogen was - you might never know this many months later. It may have triggered an autoimmune response. But you have to remember that this is probably not a death sentence and things may get worse before they get better. Keep fighting. Keep us informed how you progress.

DustBunni, I have lost faith in medicine. I went forty years without a single problem, so I had no idea. Around here, if you have anything more than a tummy ache, you better get out of town.

I went to the ER once early on after blacking out on the highway. My left face and arm was numb. Heart was racing and pounding. I went to my GP which told me to go to the ER. So I reluctantly did. Of course I had settled down after waiting forever.

The doctor comes in and said that you are not having a stroke. He told me that without ever talking to me. He had looked at the chart, decided that it was anxiety, and came in to tell me that. I will not repeat what I told him as the alarms were going off. LOL. He kept looking at the monitor, and preceded to ask me not to take the leads off. I left with them asking me to stop. I had heard anxiety one to many times.

I have had a lot of doctors that would not want to see me again. Fortunately I have found a couple that I can relate with.

Peace, I get the swallowing/breathing thing all of the time. Sometimes all night. It is awful and frustrating. I have finally heard someone else have a similar complaint. Also the laying o your side. I have similar issues on both sides. Crazy to be restricted to lying in one position. First it was one side and now it is both sides.

I guarantee that I "forget" to breathe. That is my sleeping problem. Ever getting there to begin with.

And I need to shave. LOL. Shaving is an adventure right now.

Looneymoon, to not have these challenges yourself, you are very supportive. Your son is very very fortunate to have you while he is going through this.