TorturedSoul

Hello all! I need help figuring this out since my doctors are offering me no help. There was evidence of small fiber neuropathy and autonomic dysfunction on some basic testing that was done. Last year I was very ill. Incredibly weak, shallow breathing, hyperventilation episodes and almost every symptom you can imagine. I slowly crawled my way out of h*** with salt water and some supplements that temporarily provided relief but then stopped working (acetyl carnitine). Interestingly enough I always have elevated d-dimer during my most severe crashes. Anyway the symptom that I never got good control over is an extreme lightheaded feeling. I never faint but it feels like I have to and this feeling is 24/7. I can describe it as a feeling that someone has their hands around the vessels in my head and squeezing. It's a constricting feeling/ strangulation feeling and it's torturing my life. I had a UTI and my doctor prescribed me a strong antibiotic because I get them very frequently and my head felt so much better. I had relief. Can anyone offer any insight into why this may have happened and if it points to a possible cause of my dysautonomia?

It took a year for me to get out of the last crash. I don't understand why I have crashes like this every few years. I don't understand why my d-dimer is elevated during these crashes as well. I may have EDS so I was thinking is this vascular (I have some skin symptoms) and the d-dimer is reflecting bleeding that's happening somewhere in my body? Are these crashes because of some sort of internal bleeding. Hemoglobin is always normal though. CT scans are clear. I don't understand what's affecting my blood flow. I don't understand why both of my children are showing symptoms since they were babies/ toddlers they have always displayed symptoms of autonomic dysfunction. This last crash felt like death. I never knew a person could feel that ill with no diagnosis or clue as to why. Just felt like my blood flow was severely impacted. It felt like blood wasn't reaching my lungs/ brain. I still struggle but nothing like last year. I can only pray it doesn't return to that extent

@Teodorjust was curious. What symptoms led to that diagnosis. I am suspecting EDS for my children and I. Myself and my kids are very hypermobile. We also have thin skin and you can see my veins everywhere. My son has velvety soft skin. My daughter blue sclera. She also has livedo reticularis. I had many scans over the years for my issues but no evidence is aneurysms or anything or that nature although they do not know why my d-dimer comes back elevated during my worst crashes. I also have tinnitus. Anyway my grandmother is extremely veiny and she's almost 86. She has a small aneurysm on her abdominal aorta and uterus drop but nothing else. My mother is very veiny as well and knock on wood no issues ( she did need blood transfusion with my birth but I'm a triplet and she had a c section so not sure if that matters). To be honest my dads mother was veiny as well and she's the one with the POTS symptoms. I don't know how much having translucent skin plays a part in diagnosis Bc my husbands mother and siblings are very veiny too. So not sure how Common that really is. It would be so unusual for my parents (both) and his to have this as it's considered rare. I was just curious what led to your diagnosis

Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day. However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated? It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

https://www.lifeextension.com/magazine/2014/1/outwitting-our-aging-brain interesting article on ways to increase cerebral profusion naturally

That's exactly what I think is happening. This past year I've had horrific feeling of lightheadedness. A very constricting feeling like someone is squeezing the vessels in my neck and blood isn't flowing. I know I have chronic issues with that and I think I always have. I think those episodes as I drift to sleep happen Bc blood flow isn't getting to my brain and my body wakes in a panic. I never did a test like that but they did MRA of head and neck and didn't find anything. I definitely have problems with blood flow to my brain. I think I always have but now it's just getting progressively worse. The acetyl l carnitine plus alpha lipoic acid supplement is the only thing that has given me some type of relief. Actually some days I really feel like it's a HUGE help. Other days I feel a slight feeling of being woozy but overall nothing like the torture I experienced. I also want to try arginine as it increases blood flow as well. Did you feel like the IVIG made you feel somewhat normal? My neurologist is very slow in getting back to me about how to move forward with the small fiber neuropathy diagnosis. It's very frustrating. Are they alarmed by the extreme hypoperfusion in your brain? What other suggestions were made? Isn't something that will shorten our lifespan? Can people live a long life with chronic hypoperfusion? Do you have relief when you lay down? Ironically the extreme lightheadedness would get better after an hour or so of laying down but then why would I wake up with those attacks as if something was going on with the blood flow? Shouldn't laying down bring more blood the brain? This is all so confusing and really just depressing honestly. I wish I was normal. My daughter and son are showing some signs and that's what kills me the most. Genetic? Yet I'm the only one in my family that is struggling so much. Some members have some minor symptoms but NOTHING like me

@CallieAndToby22you and I seem very similar. I actually tried to do my second sleep study last week and could not fall asleep. It happened the first time too. I just couldn't fall asleep and it's so frustrating because I NEEDED that study done. I have torturous sleep. For the longest time my biggest issue was that every time I drifted to sleep I woke up feeling like my heart stopped. And BAM then my heart would go crazy fast I would feel weak and start hyperventilation. This happens only in the transition phase. Sometimes every time I drift or sometimes just the first time. Terrible terrible. Years ago when this started they caught the episode. I was relieved thinking I would get help. They said it wasn't related to a drop in oxygen. They were bewildered. Still can't figure with why it happens but magnesium glycinate before bed seemed to control the horrific episodes. I also would wake up feeling faint or weak Like fainting in my sleep. Throw in nightmares and my hands falling asleep every night too. Overall acetyl-l-carnitine and alpha lipoid acid (one supplement) have helped me tremendously. It has calmed something down where my lightheadedness is better. My feeling like blood rushing to abdomen and weakness is better. My sleep is a little better. I wonder if you would be willing to try it as we seem similar. I actually hosted an Easter party yesterday for my kids and felt pretty good. I'm not there yet but much better than I was and this so far has been the only supplement that I have noticed a big change with.

Thank you everyone. Yes I have a feeling I'm chronically dehydrated because even as a child I remember not having thirst. In fact, my whole family used to eat dinner together and none of us wanted to drink with dinner. My mother is the same way. She can go a day without drinking and if she does maybe she will drink one bottle of water. Growing up I remember seeing her legs turn red in the shower. She also seems to have other autonomic issues but nothing that affects her at all. It's very weird. She never complains of palpitations or lightheaded feeling or terrible sleep issues and yet my symptoms are debilitating. I don't get it

I should add most days I drink about 30-40 oz

Hi everyone. I'm just curious. It's 2:50 and I had 2 cups of decaf coffee. My blood pressure is fine and heart rate good. Would that be enough to cause feelings of lightheadedness. Acetyl l carnitine is really helping me but there are some days I have this lingering lightheaded feeling. Now if vitals are normal does hydration still matter? Looking back I never drank a lot. I don't have that feeling of thirst. It's very strange. I have to force myself to drink. Would drinking 16-20oz each day of liquid cause chronic dehydration even those blood pressure is not affected?

Again, it's not a cure, but definitely having a positive effect. That weakness feeling in my legs and the uncomfortable feeling of something going on in mY abdomen (I guess it was blood pooling who knows) is so much better. The lightheadedness is better but still have a feeling like my blood flow is still not right to my brain. I'd like to try arginine or a supplement that will dilate my blood vessels as I think that will help. It's crazy but when I drink alcohol the lightheaded feeling is a lot better. How odd. Is it because alcohol is a vasodilator? My hands and feet are always cold when I'm upright so maybe I do have a problem with too much constriction. I always had a problem with flushing though on my face and upper chest even as a child so I'm just confused which is my problem. Anyway. If anyone tries this and it helps let me know.

I'm a new member. I have had horrible dysautonomia symptoms dating back to childhood. I never understood my symptoms then just assumed it was normal because I felt it all the time. Anyway, this past year I really thought I was dying. I had suffocation feeling at rest and muscles that felt like jello (salt water twice a day helped this symptom). Also, I've had debilitating lightheadedness that wasn't correlated to my vitals. It was constant and felt like someone was squeezing the vessels in my neck and I was in a constant state of feeling like I was going to pass out. That symptom ruled every single day of my life and literally tortured me. I got some results that points to small fiber neuropathy but my neurologist doesn't know much about it and doesn't know how to proceed. I did a lot of research on supplements. I found that acetyl-l-carnitine was shown to help with blood flow. Also, alpha lipoid acid for small fiber neuropathy. I found a supplement that has both and I'm crossing my fingers but I'm so much better. I hope this lasts. I still have a slight feeling of lightheadedness and some days are a little worse than others but I feel a calmness in my body. A feeling like my body needed this nutrient. Like I said, I'm not normal but I really don't know what normal feels like. I can function though now and am on my feet all day. I got some helpful ideas from this forum and just wanted to pass this along. This just proves to me that metabolically we may be missing something and supplements can make us feel a lot better. I will not give on my quest for even more relief because my children are starting to experience some symptoms. I hope this helps someone.

Thank You everyone. @Sushihe did say that the sympathetic acted appropriately to the Valsalva (it increased) but that the parasympathetic increased as well which it shouldn't have. So would an SNRI still be appropriate?

@cmep37 Aneurysms no.. diverticulitis does run in my family. My fathers grandfather had terrible varicose veins. One actually burst because it was sWollen. She actually had symtpoms Of POTS I believe. She was very veiny. My moM Is veiny but no issues. She did need blood transfusion after c section with my brothers and I (I'm a triplet). Other than that no issues. Her mother extremely veiny. She has dilation of abdominal aorta that they're keeping an eye on but she's 87. Other than that nothing major. No one on either side has suffered as much as I have.

Thank you!! Still confused about what excessive parasympathetic response actually means. I tried to research it and I read the article you posted but till confused. I have a lot to sort through. Thank you again

So I got some testing back. QSART showed small fiber neuropathy and my response to Valsalva maneuver showed "increased central parasympathetic response". I have no idea what this means and honestly my neurologist doesn't either. Can someone offer me guidance as he's willing to collaborate with me and figure this out even though he isn't familiar with autonomic dysfunction.

Thank you everyone. Honestly, anything that makes my stomach constrict makes me feel sick. I remember going to a wedding a few years ago. I had sudden stomach pain. A burning feeling that just progressively got worse. I started feeling very ill and so weak. I laid on the floor. I was taken to the ER, but they were so busy it was hours before anyone could see me. I used the bathroom finally and felt a little better so I went home. I often wonder if it was some sort of ischemia or something caused by the stockings I was wearing. I also had a weird episode when I suddenly bent down to put something in my bottom kitchen cabinet (vomiting and nausea). So who knows anymore. Thank you everyone for your responses

I read that that sensation in the abdomen that causes weakness could actually be blood pooling? Also, I definitely have POtS as my heart rate increases by at least 30 bpm when standing and my daughter showed a 40 bpm increase (she is 9) both were done in doctors office so we didn't get TTT. Just thought maybe the sensation could be dysautonomia too. Where blood pools and there's not enough flowing to arms and legs so you feel weak.

Hey everyone. I know I've been posting like crazy, but my symptoms are all over the place. I hate this "disease" I'm still waiting on results from the same basic autonomic testing, but I have this feeling in my abdomen that when I try to explain it everyone looks at me like I've lost me mind. It literally feels like I'm bleeding out in my abdomen. I don't know if it's a rush feeling or a draining feeling but it leaves me feeling weak in my limbs and lightheaded. My stomach is also swollen. They did a full body CT scan. It can't be "bleeding" Bc my hemoglobin was always normal but it sure feels like that. I don't think I pool in my legs. They don't really change color. Maybe my feet get a little red in the shower. I wonder though if there is some sort of bleeding taking place Bc my d-dimer is frequently elevated and when they try to give me heparin as a precaution my hemoglobin goes down so they have to stop. They are puzzled with this happens. The first "crash" years ago I had ache behind my left shoulder blade and elevated d dimer. Ct scan showed nothing. This time similar occurrence. High heart rate and short of breath. Pain behind shoulder blade and elevated d-dimer. Nothing. In fact they did head CT and abdominal to see if they could figure out anything. Nothing. It's been so lonely. I feel like I'm falling through the medical cracks. My kids are showing similar symptoms so now that is my sole purpose of living. To fight for them and maybe try to get some health Bc if it weren't for them I'd give up Bc I'm not living. Anyway if anyone has any insight into this sensation please help.

Just to give you a visual. She has this on her arms and abdomen. She has it pretty much all day long; even when she is warm

How many of you have veiny skin. You can see the veins in many places on myself, my daughter, and son. I know collagen disorders like EDS is a cause of dysautonomia. Also my daughter and myself can do poses like "reverse namaste". There is something called Vascular EDS and that scares me. However my kids and I also have tired legs and exercise intolerance and I don't know how much that fits in. I took them to a geneticist when they were younger. My daughter has blue sclera and chilblains. He did say it could be EDS but a lot of kids are flexible. As far as vascular I expressed my concern. My mother's mom and my mother's are very veiny. My mom has velvety smooth skin, but no vascular issues. My grandmother is extremely veiny. She has dilation of her abdominal aorta that they are keeping an eye on but she is 86. My fathers mother had diverticulitis and actually her sons (my father and his brother) had that condition as well. She also had a varicose vein rupture, but lived until 76. She passed from leukemia. All of this is overwhelming. I have seen countless specialist and no one is helping. I will be bringing my daughter to CHOP in May so that might shed some light. Just hope whatever it is it's treatable and nothing "horrible". Thank you in advance to anyone who reads this and takes the time to reply and offer some insight.

No. We actually have an appointment with a mito specialist at CHOP. Honestly we should've went straight to the dysautonomia clinic there or genetic department. The cardiologist felt like there was such strong overlap with symptoms that mito, geneticist, dysautonomia department visits were all warranted. Because my son has some issues as do I we would like to rule out mito/genetics.

No I haven't done either

Just to add we took her to a rheumatologist 2 years ago Bc of discoloration of her toes and sores. Turns out it was pernio. The doctor did some bloodwork and said it was benign. Obviously there is a circulation issues. Why are doctors so blind?

So, my 9 year old daughter seems to have a persistent mottled look to her skin. When she gets a stomach ache and is sitting on the toilet it gets worse. I do notice that it never fully goes away. When I look at my arms there seems to be slight mottling too that gets worse when I'm cold. It seems she's always had this as I remember seeing it when she was an infant as well. No doctor ever showed any concern. Does anyone else have a child with this?