davecom

Hi Lyla,

It's great you have a starting point now. If you search the forums you will find tons of threads with exercise suggestions and tips. Most people start with recumbent exercise like recumbent biking and rowing. This can be paired with some light weight lifting. After gradually building that up over a period of months upright exercise can be added. This is similar to the Levine Protocol - Google Scholar it to read the gritty details of the controversial study.

Thanks, I hope so. Like you, I can't imagine living the rest of my life this way. In fact, with my congenital heart defects, I'm pretty sure this would eventually kill me if it didn't eventually heal - just too much constant stress on the heart.

Are they considering putting you on beta blockers since you have elevated heart rates sitting?

No one has gave me an explanation for anything yet. When I first had the high heart rates at rest, they alarmed me to. Suddenly my one safe place was not safe.

The first one I had a weird sensation spread over me, and then BOOM. I checked my heart rate and it was 160 and my blood pressure was climbing. Went to the ER and all of that. It did not look like it was going to stop. It did eventually settle down.

It happened the other day, and part of what motivated me to write this post. I was laying down feeling awful like I described. Then that sensation came over me, everything went dark, I quit breathing, had the swallowing sensation. My heart rate went up real high then.

I do not get concerned about the heart rate and standing. I did at first, but it is tolerable. I will push it until it gets too bad. My head symptoms is what limits me. When I feel my cheeks going numb, I get off of my feet.

The spells at rest bother me. A weird numbing doom feeling takes over. Sometimes I can tell that one might hit. Other times it is with no warning. My breathing stops and everything. Everything goes dark. Just momentarily, but the heart races for some time afterwards. Afterwards I always go through this chattering shaking spell as if I was cold. I have had doctors tell me it was anxiety, LOL.

No. I do not think that I could get used to these spells. I do not like knowing another one will come sooner or later. I always wonder what it is and if it will settled own. It is a roller coaster afterwards with peaks and valleys. It always hits suddenly though. Very weird sensations accompany this.

I think that I would have rather heard this was normal for this LOL.

Under my finger nails stays purple pink now. My blood vessels enlarge in my legs more than they used to if I stand for a bit. That is all I have seen concerning these things. My lips become discolored and my face pale if I stand to long, or when I am having a flare like related to this post. My wife gets concerned about that.

Dave, you will get better. You have the right mindset. If I had to bet on it, I would say that you will continue to improve. I look forward to hearing progress.

Since I am still struggling every day I feel like it would be foolish for me to tell you what has helped - since I am no guru and haven't recovered myself. Am I significantly better than when things were at their worst - yes. I have less pain in general (knock on wood), more normal gastrointestinal function (hope I'm not jinxing everything by saying that... this has made me superstitious), and slightly lower heart rates. But when I get up I still sometimes see 130s heart rates. I still can't stand still. My hands and feet still turn purple (do yours by the way?). What has helped? Time, exercise, tons of liquids, a limited diet, following a strict routine (I walk every 2 hours for a set amount of minutes - exercise on a schedule too), and plenty of rest (I had to quit my job/career and I'm trying to start a new one from home but symptoms make it hard still).

What really concerns me about your case is that you're saying you have had these ultra high heart rates while sitting down - that's alarming. I've had elevated heart rates around 100 sitting or 120 sitting in a hot shower but never anything too crazy like what I get standing. How do your doctors explain that?

Dave, that sounds very familiar. Even the exact weights. My lowest weight was exactly 158. Concerning the heart rate. I get to 150 here and there. The typical is 120-130. Highest was near 250, twice. Highest documented was 220. Oddly the highest is when I have my "spells" and they are have been when I am at rest. They are quite painful when they come out of nowhere like that.

Elizabeth, you are right. Where I am lacking right now is a thorough work up. I like my doctor, and he actually pretty darn sharp. His focus has been digging into why. He felt that it was most important to see if a underlying cause could be found. I felt the same way. There is just a lot there to sort through.

I never considered EDS because there is no hyper joint mobility. I do have a hernia, reflux, etc. In fact I think the hernia has gotten worse. It gets to throbbing in certain positions. Varicose veins is prominent on both sides of my family.

I did not do well on pyrodostigmine either. Initially, I had hope. Then I ended up on a roller coaster and it increased my blood pressure and fluctuating blood pressure.

Both of these posts have been interesting and helpful. Can I ask what has given you two help and or relief? What kind of improvement have you had? Trying to get out of bed. LOL.

Thanks for the positive energy!

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.

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?

Hi Aeris5000 your story/history (including when getting sick) sounds very similar to mine.

I don't understand why your neuro would tell you that small fibers can't grow back. I'm not going to say my neuro is better than your neuro, but he is the co-director of a major neuropathy center and insists they do...

Also your POTS is almost certainly caused by the SFN, in my opinion. It would be quite a coincidence for you to happen to have both conditions... and you have gotten somewhat better - so isn't that evidence in itself that they're growing back? My neuro says that any improvement is a very good sign - evidence that you can fully or mostly recover (in other words evidence that your small fiber nerves can grow back).

I love my neurologist, but he gets a little too "doomsday", saying that the small fiber neuropathy is why I have POTS and that I will probably always have POTS. He referred me to his colleague in neuromuscular medicine, who said I really was okay, and that the SFN dx was a big "if" in his opinion. My neurologist also said POTS tends to get worse with menopause, while my cardiologist said that it should get better with menopause. I'm 37 and not near menopause, but I have to laugh at the inconsistent things I'm hearing.

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.

I have the same patterns at you w/ POTS. Have you formally been diagnosed with an autonomic disorder/POTS? My suggestion to you would be to look into w/ an autonomic doctor in your area - and also to get a glucose tolerance test from your primary. Good luck wishing you the best - definitely hard to deal w/ that w/ college.

Hello all!

I'll be brief: I have the characteristic dramatic rise in heart rate when standing that characterizes POTS (my record is 80 supine, going up to 130 when standing, immediately). Since drastically increasing my water intake I have resolved many of my symptoms, especially my near faints (so frightening!). However, one remains that is a huge burden for me. When eating a meal, especially in the evening for whatever reason, my heart rate will shoot up again, within minutes of finishing the meal, and I'll get *extremely* bloated. At first this was only happening with really sugary things, and it would be accompanied by shakiness and restlessness. My doctor mentioned postprandial hypoglycemia, but said it wasn't likely because I'm not lean and I'm not female. Anyway, figured it couldn't hurt to cut out all those refined carbs anyway, so I did. The shakiness and anxiety and tremulousness have mostly resolved (yay!) but still even on what I'd consider a smaller meal I get the bloating and the racing heart (fyi, I've had much of the typical doctor stuff done already like extensive blood work, cardiac tests, just to be safe). These episodes are extremely debilitating for me, leaving me exhausted and feeling ill, and they last for 4-5 hours, give or take. Hydration doesn't help, the only thing that helps is not eating, which is obviously no solution, so I'm going to try and be really vigilant about eating many super small meals throughout the day, but to be honest my lunches and dinners aren't exactly lavish...I'm a college student haha so I make do. They are small meals is my point, so we'll see if even smaller helps at all, but I have my doubts. Does anyone understand this? What has helped you? This is taking over my life...I'm only 23 and I've got so much to do and I can't eat a **** plate of broccoli without feeling like I've run a marathon gahhh!!!!

There are some long threads on success/recovery stories if you search the forum. I agree it's good for new threads to come up every once in a while to remind everyone.

I've talked to people who claim to have made a "majority recovery" and my doctor who sees many patients with POTS caused by neuropathy (which is apparently around 50% of cases) claims a lot of people do make full recoveries over a 2-5 year period. He insists that it's very slow - takes a lot of time for small fiber nerves to regenerate.

You have to remember that someone who makes a full recovery is unlikely to come back to the board to remember their nightmare... at least that's what I tell myself to explain why we hear from so few of them. The studies claim there is a significant portion of patients who make a full recovery too for what it's worth.

Yes, I've had several different ANAs... All negative in my case, however of course you're right - a positive ANA is not definitive of anything on its own.

Was it a generalized ANA or for a specific nuclear antibody? Are they going to diagnose you with a specific autoimmune condition?

The goal of all the typical recommendations - exercise, salt, fluids will improve blood flow the brain by volume expansion and improved heart contraction strength.

Even if it came back down, that's quite a shock to the system if that was a real reading and if that's happening regularly. Was it after eating like a 7-11 slurpee

If you quite suddenly get sick out of nowhere and all known systemic diseases are ruled out, it's presumed a pathogen (bacteria, virus, fungi) is the cause. This makes sense since pathogens are the cause of most illness. Certain pathogens are also known to be triggers for system conditions.

LooneyMom, This doctor did the Mayo panel on the first visit. They all came back negative. Now, I do not have a grip on what some of those tests are, and I do not know what the other possibilities could be. I have had a lot of blood work drawn. It is time for me to get a grip on all of this stuff. As I said, it took me a while just to figure out that what was troubling me was autonomic dysfunction.

I have considered an auto immune type condition, because of the speed of the progression, and that it continues to progress. I also wonder about an inflammatory type response.

The way my logic works, it seams that supplements like lipid acid etc. could be helpful once the immune response is settled down. I think it is interesting that you mentioned the Colostrum. I have thought back to it, but not considered using it. My thoughts were related to animals. It is used in young livestock that is failing to thrive, and it does boost the immune system. Have you read anything that implies that it could settle the immune system down?

I checked my blood sugar this morning and it was not high. 88. I checked it after eating last night and it went to 384, but was 125 an hour later. I do not think I have a blood sugar problem, but might be considered someone that could develop one in time. This is something else that I do not know a lot about. I will let them rule that out though.

Rachel I have read some posts about you and your son. I hope that you get all of the answers that you need soon.

384 is very high. I wonder if that was not an inaccurate result. Either way, low carb diets tend to help POTS by reducing the amount of blood flow needed to the gut.

Yeah that is a high for a purely fasting glucose. I think you may want to get those workups that your neurologist suggested. It sounds like he's on top of things. How refreshing!

PS You're saying Duke hospital is better than UNC in general? I've found the same thing with big university medical centers. The private university hospitals are always better.

He told me it's really about how much you can tolerate digestively (tends to cause acid production for people). He also, (smartly in my opinion) cautions against starting too many supplements at the same time, since you don't know what's doing what then. The studies done were with 600 mg of intravenous s-lipoid-acid daily. My understanding is that the r-form is more bioavailable. I started with 100 mg/day and recently went up to 200 mg/day. He told me to feel free to go even higher than that if I'd like after trying out the 200 mg for a while.

There are literally dozens of possible causes of small fiber neuropathy. However, by far the most common cause is diabetes or pre-diabetes. Getting a glucose tolerance test is not a bad idea. Mine was within the normal range, but just barely. Having glucose spikes and a high carbohydrate diet is certainly not helpful for POTS or SFN. I have also run into several people who have POTS caused by sjogren's syndrome (an autoimmune disease) who were negative by blood test for sjogren's. The sjogren's antibody blood tests are only 70% sensitive. I ended up getting the lip biopsy for sjogren's (pretty painful but supposed to be fairly definitive) which was negative in my case. The first sign of sjogren's can be small fiber neuropathy. If you want to get the sjogren's lip biopsy it might be quite a battle to convince a doctor to do it for you.

Anyway, I'd keep looking if I were you. I feel like I'm at a similar stage to you (confirmed SFN, POTS, with no positive blood tests). I've run out of tests to get for now as far as underlying causes go (since I have no evidence to justify any others), so I'm starting to be more hopeful that in my case it was just a freak one time reaction to a virus as my neurologist, and some other doctors believe.

I'm sorry you're getting worse. Are you doing an exercise program, tons of fluids, salt - all the standard stuff?

I also have had very deficient D levels. I was at 17 a few months ago and have been down to 13 before. I'm taking 50000 units of D once a week and levels are slowly rising. It's strange that so many of us have this similar issue

I don't think it's really that strange. People with POTS are unlikely to be majorly active outdoors and are often on restricted diets. Therefore the main sources of vitamin D (sunshine, food) maybe out of whack.

Hi gjensen,

Sorry about your diagnosis, although it's not too surprising if you have POTS, since it's the cause of 50%+ of cases according to Mayo's studies. There is definitely hope. SFN can reverse if the underlying cause is identified and treated. In some cases of POTS, it is thought that a freak autoimmune reaction to a virus led to the small fiber autonomic nerve damage. That is what is thought to have happened in my case. Typically, according to my neurologist, who is an autonomic neuropathy specialist, the nerves can regenerate over a 2-5 year period if there is no underlying other cause (i.e. no long term autoimmune disease, diabetes, etc). There are supplements that can be helpful for peripheral/small fiber neuropathy. I'm taking r-lipoid-acid under my doctor's guidance. We're also going to be adding l-carnitine into the mix. If you do some Googling for small fiber neuropathy supplements you should be able to find more information. There have also been some studies done in Europe.

Kind regards,

David

My vitamin d levels were low.... 25 on the 30-100 scale. I tried supplementing with d3 pills but I felt really sick, fatigued, and depressed from them which is the opposite of what I would have expected it to do. Everytime I stop I feel better. When I start them again I feel sick. After doing this many times I have accepted the fact that the supplement makes me sick. Sunlight seems like a much better source and doesn't make me feel sick but doesn't get my levels up.

Does anyone know exactly why people with dysautonomia have low D levels? It really amazes that in 2013, almost 2014, researches and docs can not identity the role of this hormone in certain conditons and how to deal with it. I don't believe supplementing or just taking it is the answer for a lot of conditons and would argue that it actually makes a lot of conditons worse. You would think we'd be further along in this stuff but it is what it is I guess. Like most medical stuff it's a complete crap shoot. Go figure?!?

Hey Jon,

Could it have been an additive in the supplement that you were taking that made you sick? Perhaps you could try another brand? Also if you were supplementing with D3, you could try D2. It's not as effective since the body needs to convert it into D3, but in your case it might be worth a look. Of course there's also foods that are vitamin D fortified that you can buy.

Good luck!

My understanding based on reading some articles is that 30 D3 is what the lab considers "normal", and 50 what vitamin D enthusiasts consider normal? Who told you 80 was normal? I was borderline when I was at my sickest when I first got sick a year ago in the mid 20s - I've been supplementing with 2600 IU a day (D3 + multivitamin has some D) and now I'm in the low 40s.

Recumbent biking, light weight lifting, and rowing are pretty commonly recommended POTS exercises.

I have horrible acid too from nerve damage/POTS. It's actually my worst symptom. Similar exercise has helped strengthen my heart too to help me cope. I'm going for an endoscopy in January for the same thing... my bet is they won't find anything, but ya know might as well. You may want them to test for H. Pyloori and you may also want to get the acid testing in your esophagus (they leave a little device there for a couple days), I'm getting that.