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Hyper POTS. What supplements, herbs help? Does anyone have symptoms like mine?


Viktor
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Hi, guys. I have hyper type of disautonomia, not sure if it's hyper POTS though, because I was never diagnosed yet, even though I was bedridden on a few occasions up to one week. I have dysautonomia problems during 16 years period, but it really started to bother me in the last 2 or 3 years. Before that I was able to manage symptoms on my own. I have relapses quite often now. I had to change my sedentary office job because of that and to find more physically active job, so I do security job now where I have to walk a lot during 12 hours shift. Too less movement is bad for me, as well as too much movement is bad for me (but luckily, often brakes allowed) . So to manage my symptoms I have to always find a happy medium, which is difficult. If I don't find happy medium I may feel high blood pressure (but beta blocker bisoprolol now saving me from this symptom) dizziness, post exertional malaise, overstimulation state, tacycardia, insomnia, bad appetite, hands tremor... Sometimes blurry vision and tinnitus (but its rare). The major triggers of my symptoms are exercices like even 15 times push ups or 15 times squatting are making me symptomatic , some weight lifting. But I can run on the good days, up to 10 minutes, before I get symptomatic. Also I have heat intolerance, alcohol intolerance, caffeine intolerance. My symptoms also very bad when I am in the plane (during descend). The same happens when I tried roller coaster ride. It can probably kill me now. Stress is also a big trigger, also hassle and bustle on the streets in busy hours, too much noise around are causing so called sensory overload symptoms for me. My cognitive and memory functions are also affected sometimes. Also if I sit too long in front of the computer I have sometimes that overstimulated feelings or my blood pressure may increase. Sometimes I may also have extreme fatigue and weakness after a few difficult days at work (and only two days off may bring me back to normal) . So basically I have hypersensitivity issues, overstimulated, hyper state with some slight dizziness, loss of balance, slight breezing problems, high blood pressure issues (but again symptoms may get worse at certain triggers and make me even bedridden if I am not careful) . I think that my symptoms may be due to the bad brain blood flow (cerebral blood flow) or neurotransmitters (brain chemicals) imbalance, because I had a concussion and neck injury 16 years ago and I believe that that when my disorder got worse, but I also had some mild symptoms before that. Also, another clue that it may be due to some nerve damage. I wonder how many of you guys have similar problems and what natural supplements, herbs do you take and find that they help? I am not asking for the drugs, because there are some many threads about it already, but I am asking about natural supplements and herbs? I have a big hopes for them. I tried already few that made me wired and jittery (l carnitine, D-ribose, Coenzyme Q10). Now I am taking alpha lipoic acids (no side effects with this one but also not much positive reactions felt). But I think that L theanine, omega 3 fatty acids, magnesium and vitamins B complex helps me with anxiety, jittery and overstimulation feelings, also with memory, cognitive function, more clear mind, less mental fatique. Also drugs piracetam and cinnarizin help me with dizziness symptoms, brain blood flow. But regarding supplements. I am planning to try also this: St John's Wart, Ashvagandha, Rhodiola Rosea, Bacopa Monniery, Ginseng, ginkgo biloba, Turmeric Curcumin, Rasveratrol, NAC, Dmae, CDP Choline, phospadilserine, Inositol, lion mane, huperzine A, licorice root, 5 HTP, PQQ, l arginine, l tyrosine, glutathione, quercetine. I may also try famous Mind Lab Pro brain nootropic, Qualia Mind (caffeine free) or Parasym Plus (vagus nerve support), Cerefolin NAC. So what do you think guys or girls with hyper state, what supplements have you tried, what has helped you and what should I try? Thank you very much for your answers.
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Hey just want to say that you should definitely pursue to get more imaging done on your neck/brain. Neck injuries have been a known cause for dysautonomia. I have POTS and didn't know what was causing it. It turns out I have very bad neck instability especially at my C1 area. I got injured over a year ago due to chiropractic neck manipulations and then getting sick with an illness that drove an inflammatory process in my body. I've also had many concussions years ago which could have done something. Because of my neck instability, my vagus nerves are damaged and my brain-stem is being compressed causing the dysautonomia. The brain stem is the autonomic nervous system epicenter so if it gets provoked or injured that's when you start having symptoms and problems. The vagus nerves originate in your brain stem and are integral to your nervous system functioning right. Any neck injuries could hurt them as they run down the sides of your neck and go into your body. I wish doctors would focus more on the cause instead of just treating the symptoms. I found out my neck was unstable after getting a digital motion x-ray done which I highly recommend everyone to get if you have one in your area. Also MRI's can show it too but you would need a doctor knowledgeable about Cranio-cervical instability to help you. Right now I'm focusing on trying to get prolotherapy to see if it can help strengthen my ligaments in my neck and resolve the instability. If it turns out I'm too far gone for prolotherapy I'll probably need surgery to fix the problem. Many people have had their dysautonomia go away once they resolved their neck issues. I just thought I'd mention this since you think a neck injury is what triggered your symptoms. I also share almost all of your symptoms only I get low blood pressure more than high. 

In regards to the supplements, you have a really good list to try. I've tried many of them but react badly to lots of supplements because my body can't seem to handle things normally anymore.  I had a positive experience with Ashwagandha,  Turmeric/Curcumin, NAC, Quercetin, Resveratrol. Some of the other ones I've reacted badly to like the St. Johns wort. It seems that things that effect my neurotransmitters tend to mess me up. The one thing that didn't however was Valerian root which I recommend. It really helped with anxiety. Of course everyone is different to how they react. 

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Thank you very much for your information. I never heard about digital motion x-ray. Definitely something I need to try. But to be honest I didn't have even neck MRI done yet. I currently live in the UK, and this specific tests is something that is possible here only in the private clinics. Because when I go to the state GP, they always answer something like: "you cannot self refer yourself, we need to see the problem before we can refer you to the right doctor, but we don't see the problem. GP stuff in the UK are so stupid, they always judge the patient by how he looks like, and they think if the lips are not blue, and if the face is not pale, than it means that the patient is completely healthy, and no need to see inside of his body (or maximum will do the general blood test and measure your blood pressure) Very unnoying. The last time when I complained on the phone about my dizziness and claimed the MRI, she just said: "maybe try to drink more water, MRI scans are bad, because of the radiation, so we cannot refer you unless we see very serious problem". Crazy and stupid. And this approach and ignorance is killing me. Many of them never even heard about dysautonomia or POTS and sometimes asking me what is that. I cannot afford the private clinic, since only the consultation cost 200 GBP. But I will come back to Ukraine, where I am originally from, and will do what I can do there for a penny cost. They have MRI for sure, but not sure about digital motion x ray. They don't have tilt table tests even, so not sure. But I will definitely try to do now all possible neck and head tests, since my dysautonomia is progressing and I start wondering what may happen later in the future, if I will just leave everything how it is now. Thank you very much for this info and thanks for letting me know which natural supplements have helped you. Also if you don't forget please keep me updated here how your neck treatment goes. By the way, which consultant and where has ordered digital motion x ray for you and why? Do you have the pain in the neck or you have mentioned other symptoms to them, that they found relevant? 

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I'm just about to join this forum...but I might forget about replying because of brain fog.

 

I use a herbal blend containing 4 herbs with calming effects: Valerian root, lemon balm, passion flower and hops; plus some b-vitamins and a few other stuff I can't remember now.

It's pretty good with calming my heart and giving me 5-6 hours of continuous slep.

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