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?