TorturedSoul

So I most likely have hypocapnoc cerebral hypoperfusion. Why the doctor didn't formally diagnose this and just told me "to follow up with my neurologist" is beyond me. I looked at the testing results which said "hypocapnic hyperventialtion" and 18% cerebral blood flow decline upon standing. For those with this diagnosis, did he not formally diagnose this because the drop didn't meet a cut off? 18% seems like a significant decline and explains everything I've been saying to doctors (there is something wrong with the blood flow to my brain) Any treatment options? Has anyone seen a specialist familiar with this or anyone that specializes in Dysautonomia that will at least trial medications given this information? I have to be honest, I'm not impressed with how I was treated. The dr basically sent me on my way knowing I have these issues. He barely spoke to me during testing either. Felt like a lab rat.

@Amyschi I know your question wasn't directed at me, but I have felt the dread, doom, and death feeling on multiple occasions followed by "hyperventilation" symptoms that have sent me to the ER. What the doctors never seemed to understand was that there was something physical happening not psychological. Coincidentally, during my most severe crashes my d-dimer is always elevated so when I go to the ER they always do a CT scan to check for a clot. It almost feels like that could be the cause because it could be a sudden feeling of doom and weakness and difficulty breathing. It always comes out clean. Now I have some information with the testing in Brigham. It's the cerebral blood loss that is most likely triggering these symptoms , but I still don't know why. Why when I stand up am i hyperventilating in the first place? When I lay down I'm not. It's all so overwhelming. Yes I do get worried because I feel the doom and "dying" feeling a lot and I have to stop myself from going to ER. I often wonder if it is something like a clot or a heart attack I would never know the difference. Scary place to be.

@bumpkin hmm interesting about the mold, but my daughter has had symptoms since birth. We moved a couple of times too. Honestly, it would be one thing for me to be suffering, but knowing I may have passed on this "monster" breaks my heart. That's why I made an appt with Dr. Novak. Hope and answers for my family. For him to say it was "essentially normal" and to follow up with my neurologist confuses me since the report says my results are abnormal. Well the autonomic and tilt table was normal. It was the cerebral blood flow during tilt that was abnormal with almost 20% decline in blood flow upon tilt. When I had my "crash" I kept telling the doctors it's not a panic attack in the sense that it's psychological, something is happening physically that is making my body panic. I kept telling them I feel like something is wrong with the blood flow to my head. No one took me seriously. When I read Dr. Novak's research I was excited in a way bc it sounded like my struggles. During my crash I would hyperventilate even walking or after eating. The blood flow everywhere felt so off. Even weird feelings in my abdomen. Honestly it felt like I was bleeding out and I felt incredibly weak like my muscles were jello. I suffered for a year. The extreme lightheadedness got better after a round of Cipro for a UTi which is so weird. The suffocation feeling at rest only got better when I drank 2 bottles of salt water a day. It's the only thing that gave me relief. I would love to see a functional neurologist. I live in NJ. I'll have to do some research. The report says hypocapnic hyperventilation upon tilt. I'm trying to research, but I don't see any treatments for this. Do you have a similar diagnosis? We share a lot of symptoms.

@bumpkin thank you for responding so quickly. When I have my "crashes" and feel so weak the adrenaline surges and hyperventilation episodes are absolutely frightening. I'm assuming the most severe episodes are the result of a larger decline in cerebral blood flow than usual. I don't know. This is a scary place to be. I feel like I'm dying sometimes and when I go to the ER when the hyperventilation episodes are escalating they just say it must be anxiety. It is so frustrating and honestly my daughter has similar symptoms and it just breaks my heart that I may have passed on this monster. What doctor do you see?

I'm very confused. I went to Brigham because I have been struggling so much with autonomic symptoms. Lightheadedness and shortness of breath are my most severe symptoms. I literally have crashes where I feel so weak and often have episodes of "hyperventilation". I was so hopeful to go see Dr. Novak. I waited a year. Then after the testing I get a call saying results are "essentially normal" and no follow up needed. I look at the results in my portal and it says: during tilt CBFv declined by 17.5% and it was due to hypocapnic induced cerebral vasoconstriction. Blood pressure and heart rate responses were normal. CO2 normal during supine position but hypocapnic hyperventilation upon standing. So this is exactly what he has researched and discovered and yet he said no follow up needed. Does this make sense? What can I do to treat this?

Thank you!

Can anyone recommend a probiotic that's good for motility issues?

Yes her levels have been tested and she has no deficiency. She did see a neurologist. He did a 24 hr EEG that was normal and and MRI. She also fatigues very easily and has stomach issues as well. I guess iM wondering if POTS can cause all these neurological issues

I have a question. My daughter woke with vertigo in the past. It lasted on and off for an hour and a half. She also has a weak feeling in her legs. She could still walk but she felt a little weak standing. I gave her a salty snack and water. Eventually it subsided. I brought her in to her pediatrician that day and they sent me to ER By the time we got there she was fine. They did a clinical and didn't feel like it was necessary to scan her. Another morning she woke up with a headache and nausea. She also said her legs felt weak. The feeling eventually went away. She also has headaches that she describes as a tight band around her head. It comes with nausea though. It sounds to me like a tension headache but when I read up on it it says tension headaches don't usually come with nausea. Does anyone have any insight into what these episodes could be? She's had brief episodes of shaky vision. (Lasting seconds). She had an MRI a couple of months ago and thank God they found nothing. I just don't know what to make of these symptoms

Is coffee high in histamine? How about decaf? I decided to stop coffee completely even though I was drinking decaf because I feel so lightheaded 24/7 and know that cerebral f blood flow is my biggest issue. I know caffeine is a vasoconstrictor but thought might as well stop it completely. A day later I get a pounding headache. I can't believe even with decaf coffee I still got a rebound headache that intense. Maybe that meant it was affecting me in some ways. I feel a little better honestly not having it but not sure yet. My question is for those with MCAD do you have to stay away from coffee decaf included? And if caffeine is a vasoconstrictor how can it be bad for those with histamine issues. How can it vasoconstrict and also vasodilate? Also I don't know if I need to look into MCAD because I don't really ever get skin symptoms after food. My biggest issues are autonomic (bad shortness of breath, lightheadedness, palpitations). The only thing I do get is flushing (which I've always flushed since I was a teenager) when hot, nervous, with wine or alcohol. My entire chest will be beet red. Can you have MCAD without hives and skin manifestations? And what's everyone's thoughts on coffee as a trigger?

@Sarah Teeyes! I've looked at his research and his research on hyperventilation as a cause of POTS symptoms intrigued me. I also didn't want to a standard tilt table test. At Brigham they also monitor cerebral blood flow in all positions and that's one of my biggest issues. I chronically feel like the blood flow to my brain is disrupted )chronic lightheadedness, brain fog, etc) It feels so severe yet I never faint.

Thank you everyone! I appreciate your input. It's amazing how many symptoms arise from autonomic dysfunction. I finally got an appointment in Boston at Brigham's hospital. Too bad it's a year away. Snails pace

I've had this symptom for the longest time. Probably since adolescence. I'll feel like the room is dimming. Almost like someone is dimming the lights very briefly. I remember in the past seeing the room get darker almost as if the sun moved behind a cloud and effected light coming in. Anyone have this symptom? I wear glasses so I get yearly exams. I don't think I've done the glaucoma test though in a few years.

@MomtoGiulianathank you for your reply. Thinking back do you think you had symptoms as a child?

I should also say she had a sleep study done that was found to be pretty normal except her oxygen stayed low most of the night. She had lung function test that came back perfect. When she did the 24 hr EEG her pulmonologist monitored her oxygen at night and it was fine. Never went below 95% so they felt maybe because she did the sleep study 4 weeks after she had Covid it may have affected the oxygen readings. I thought maybe it could've been an error with the pulse ox itself but the doctor said probably not. I've tested her at home multiple times at random points during the night and never got readings that low. Anyway I just don't know what to make of headaches, dizziness, and vertigo that happen when she's laying down

My daughter woke me up at midnight (she's 11) saying she had a bad dream. She also had a headache, dizziness, and her legs felt a little wobbly. She has PoTS. Could it be her blood pressure was low? I don't know what do when she has episodes like this. A month ago she woke with vertigo at 5:30 am and it lasted on and off a couple of hours. By the time I got her an appointment with her pediatrician it was late afternoon and the episode was long over. Anyway she sent us to ER and they did a clinical assessment and said she could go home. During that month she had an MRI done (weeks later) and a 24 hour EEG. Everything came back normal. What could these episodes be?

Thank you both! Well she sees a doctor at CHOP who is an autonomic specialist. She didn't do the tilt table test on her and feels fluid and salt is enough for treatment but it's not really making a huge difference because it's so hard to get her to drink. She has no thirst. I have to force it constantly. She's very hesitant to prescribe any medication as my daughter is only 11. I wish I took her glucose to see if her blood sugar was low when she woke with vertigo that lasted 2 hours. I gave her water and saltine crackers thinking maybe she needed the boost but I didn't even think to give her something sugary to see if that would help it go away faster. I think I do have to look into the glucose test. Between the low glucose and high ketones it's not wonder she's gets so ill when she's sick. It's been so slow going. Getting anyone to help. Even with my health issues. I even asked her doctor at CHoP to write a standing order for IV saline when she's sick and she didn't think it was necessary saying even small sips throughout the day should keep her from being dehydrated. I just don't get it.

Wanted to see if anyone has any idea what could be going on. My daughter was diagnosed with POTS at CHOP but it just doesn't explain all her symptoms. She's scheduled to get EEG done next week to rule out seizures. She had an episode of vertigo that lasted 2 hours and woke her from sleep. We took her to the ER but after a clinical exam they felt they didn't need to do a CT scan. We have an MRI scheduled this week just to be sure. When my daughter gets sick with a high fever she always needs to go to the ER. This has been going on since she was a toddler. She always spirals downward until she is extremely lethargic and severely nauseous. She doesn't want to take anything by mouth because the nausea is so bad. What I noticed is her blood sugar is always low and they tested her ketones this last time and it was very high. I wonder if hypoglycemia could explain a lot of her symptoms. She's constantly snacking or eating. And maybe the episode of vertigo early that morning was because of her sugar. Does anyone have any insight into what may be causing her issues? I keep bringing these issues up to her doctors and they are so pathetically inept. I had to beg them to give her fluids after they said the tests show she's not severely dehydrated. Yet after she received fluids she was a different girl. She went from being bedridden for 4 days to smiling and laughing and playing when she came home. Every time she gets fluids she makes such a turnaround. I think the low sugar and ketones when she's sick is what's making her so severely nauseous. I need her doctors to shed light on why she gets so Ill anytime she has a high fever

I have been using several pulse ox monitors over the years. Never did I get readings that low, but I couldn't measure continuously. Even so if the report said it was low 95% of the time you'd think I would discover similar results during the random times I have tested. I hope it was an error. Im waiting to hear back from her doctors. Thank you for taking the time to reply

Hello all. This post has to do with my daughter who like me has autonomic dysfunction. She had a sleep study done that really stumped the doctors. She stayed at below 95% oxygen saturation (90-92%) for 95% of the time she was sleeping. I was shocked. She had very few apnea events and no hypopnea. Her CO2 also didn't go above 50. The doctor has no clue what to make of the results. I'm very concerned. She definitely has sleep issues. However whenever I have tested her pulse ox at random times throughout the night it never registers that low. It actually was 99% every time I tested Last night. She saw a cardiologist last year and everything was normal and she did amazing on her breathing test so dr felt it wasn't her lungs. She said that leaves neurological causes. Could it be POTs that affected the O2 reading? I just can't understand how it dropped that low all night and yet when we test at home it's never that low. Also very few apneas and no hypopneas. I would think if it was neurological or neuromuscular something would be off there as far as apnea/hypopnea. Does anyone have any insight?

@toomanyproblemsI agree. There has to be an issue with fluid balance. I wish we could figure out the root cause because maybe there is a solution; perhaps a supplement or treatment option. I agree. I literally have to force myself to drink and like you I just pee it all out. So am I even retaining the extra fluid. I was in the hospital during my most severe crashes. Of course they said it was anxiety but I felt like it my blood was not circulating properly at all. I was hyperventilating all the time but it was always preceded by a sudden feeling of weakness. Now of course they were able to see through testing that I have significant autonomic issues. Even still they minimize it because they don't know enough about it. So because nothing obvious is showing up on standard testing (cardiac and pulmonary) they minimize my symptoms. It's such a lonely road. I appreciate you and all the other members on this forum.

@RecipeForDisasterso strange that IV fluids helP tremendously. I guess you're just not retaining what you drink orally. I had a cardiac MRI along with every other test imaginable. All normal, except autonomic testing. It's unreal how can you feel like DEATH and yet nothing shows. I really do feel like I'm trapped inside this messed up body. I wish I could find answers but it's an extremely slow process.

Hi all. I'm so confused why I suffer so much with autonomic issues. My Mom definitely has some symptoms as I always noticed her feet and legs would be warm after a shower and her heart rate would sometimes feel rapid. However she does not have any symptoms that affects her daily life. Im crippled by whatever this is. I have small fiber neuropathy and autonomic issues that are not yet identified as the doctors here have no idea what to do next. Anyway, my family and I all have a lack of thirst. I don't even remember drinking with dinner as a child. My mom can go all day and only drink a cup of water. Yet she feels fine. I never drank much at all. One water bottle a day maybe for most of my life. I never had the drive to drink. Is is possible my symptoms are worse than ever because it's just my body being sensitive to the lack of hydration. I guess what I'm trying to say is how big a deal is hydration when it comes to dysautonomia. Can it explain symptoms of shortness of breath and chronic lightheadedness. The lightheadedness for me got better after a round of antibiotics that I took for a UTI. I have no idea why that would be but some have said even minor infections can trigger symptoms. Last night after a bath I had a rapid heart rate and shortness of breath that lasted all night. Can something as simple as a bath cause that!? My daughter and son have POTS symptoms and yet no one in my family struggles like we do. I feel hopeless. I wonder if not drinking even close to enough throughout my childhood and adulthood just led to a crash. My kids don't seem to have thirst either. they can go a whole day without asking for a drink. Just crazy

Wow thank you! That's incredible to me that a UTI can trigger symptoms like lightheadedness and tachycardia. I would never think to connect the 2. I probably had a UTI for 4 months straight. I tried amoxicillin it didn't work. Then a couple of weeks later I tried Bactrim. That didn't touch it. Two months later I tried Cipro and that finally cleared it and Lightheaded feeling got much better. I'm still stunned that a UTI can trigger flares and symptoms mentioned above. Maybe there is an inflammatory component or maybe it's the immune system's response to the UTI causing the symptoms. I wonder if I should take a natural supplement with antibiotic properties and see if that helps. The problem is I'm very sensitive to herbs. My naturopath gave me a supplement with a bunch of herbs and I woke that night hyperventilating. I think I have issues processing salicylates or some other compound because I'm just so sensitive to everything. Thank you everyone for your input. I'm determined to figure this out because my children have symptoms as well. I always flushed as a child so maybe there is a histamine component. It's so hard because I can't find a doctor that really knows much about this.