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Everything posted by Evergreen

  1. I have felt some improvement recently with taking consistent vitamins (b vitamins formulated for mthfr genes, magnesium, vitamin d, and an herbal thyroid supplement), and also making sure I get a snack every couple hours. Just eating a green apple in the middle of my day has been helping a lot. I think my problems could be due to blood sugar. Also I eat red meat regularly. Thank you all
  2. My wife gets that from time to time. (She doesn't have POTS.) not sure exactly why it happens but it's happened to her for years. If she doesn't touch it at all, it barely hurts, but if she touches it a little, it hurts so much. Hers usually goes away in a few days.
  3. My HR used to be atleast 120 when standing and could go up to 200 BPM. Now when I stand and walk around my HR is between 85-105 max. My systolic bp is usually in the 100s now when it used to always be much lower. I was hoping I was healing but my other symptoms are still there. I don't understand why if my BP/HR is basically normal why I still have this horrible fatigue, body tingles, head symptoms ect? Has anyone's tachycardia improved but other symptoms are still there? For example right now: 107/57, 76 bp resting. That's SO much better than it used to be. But I feel completely miserable. My head and tingles are worse than ever and I have zero energy. Any thoughts?
  4. Congratulations! It's wonderful you were able to find something that worked. It's so encouraging to hear positive stories like this. I hope you continue to improve!
  5. Has it helped with you're symptoms? I remember having a fever before my POTS symptoms started and my DR. Suggested an antibiotic but I'm not sure about getting on antibiotics because I don't want it to weaken my immune system any more than it already is.
  6. I'm sorry you have to go through this as well. If I figure anything out I promise to let you know too. Good luck at your neurologist appointment. I hope she can help you!
  7. I have this squeezing pressure that no doctors have an answer for. It's constant and never goes away. I want to go to the hospital but I've been there 2 times already and have been sent home. The most recent time they did a lumbar puncture but said my pressure was fine. No doctors I have been to have been able to figure my head pressure out. If you get yours figured out, please let me know and maybe my doctor can figure out if that's my problem as well.
  8. This is exactly what I'm going through right now except sometimes feel a little dizzy/ rocking back and forth feeling. So fatigued I can barely move. My muscles feel so weak I feel like I have the flu or something. My head weighs a ton but my standing heart rate has been in the 80s-90s which is amazing for me. I just don't understand this illness it's so confusing. My right hand usually always tingles a little now my left is tingling too and both my legs are tingling
  9. I've been trying to make sure I eat well balanced meals, but frequently have no appetite. I do try to make sure I get red meat each day. I also just had some leafy greens and dandelion tea and noticed my nerve tingles improved for the first time in a while. Not sure if that's coincidence or not, just something I noticed. Yesterday I picked up some SAMe. I've been having lots and lots of joint pain so I am hoping it will be helpful in that way, as well as my depression. I also am trying L-Tryptophan as needed. I will be trying to find a doctor who can help with physical symptoms and depression thank you
  10. I sometimes wonder if POTS can sometimes be caused from depression/anxiety. Thank you all for you're replies. Ks42 I've been really worried I could have mold because I get this pressure a lot of times at the back of my head that changes spots like if I lay on the left side of my head for just a couple mins and then sit upright the left side of my head will feel this pressure like it needs to wake up and then after a few mins of sitting upright my head will go back to feeling pressure like in the top of my head or forehead or back of head. My head feels like it's being squeezed really tightly also feels like my brain is swollen but MRI was normal. For the ct they said one ventricular could look bigger than the other but acted like that doesn't matter it's normal. The first time POTS started for me was after over excersizing then eating a big sugary French toast meal and going to bed. Woke up that night with eletric feelings in my chest and my pulse was around 200 and my vision was going black with tingling in right hand and right side of face was numb. I guess that's when my pots actually started or maybe it was slowing starting since I was a teenager. Then all I had was a sometimes over 100 heart rate for that next month. Drank wine trying because I heard wine was heart healthy and thought it would calm my heart. Well after drinking a little too much one night the head pressure suddenly came has NEVER went away since I drank wine that night. It is constant head pressure that comes and goes in severity. I'm really hoping the head pressure can be from anxiety depression and not mold because for some reason docs think mold is just imaginary and don't seem to care about testing for it. I did have my house tested and they said my air quality was exceptional (which just meant no active spores, they said there was definitely moisture in the walls and floor) And I had a mold antibody blood test that was normal. It was an inhalent allergy test, so I still worry about candida or something. I went on a VERY low carb diet because I was worried it was mold. For months I couldn't think and felt terrible, now I eat more carbs and my cognitive function is better but the eletric feeling through my whole body is back and tingles and numbness. Im not sure if the mold antibody test I had is conclusive enough, or if should I try more mold testing. I was a vegetarian for years and have eaten a lot of cheese and yogurt. I worry that could have caused a mold problem. Also I have the MTHFR mutation so I guess my body can't detox properly
  11. When I was a teenager my mom had me on a bunch of different prescriptions. I don't remember what all they were but I worry that they caused damage to my autonomic system and now the only way to get back to normal is take them again. I read that SSRIs and SNRIs sometimes helps pots. Has any one had any experience with this
  12. So here's my story for months I thought I could have mold or candida so I went on a mold diet and the head pressure was better and electric feelings through my body were basically gone. But my brain fog was horrible and everything felt like a dream. So I went back to eating carbs about for about 2 weeks I've felt a lot better. Brain fog was basically gone. I could laugh again, and I started to feel back to myself. Now it's been 3 weeks and my head pressure is so strong it feels like my head is being squeezed constantly. This tingly electric blood flowy feeling is running through my whole body. It's very scary. I don't even know what to eat anymore. I had a spinal tap done at the hospital and still haven't gotten my results back. Does anyone know if the spinal tap results will prove that there's no mold or candida anywhere in my body? I really need help I don't know what to do anymore. I think I may be going to the hospital again but every time I go there's nothing really they can do for me and send me home. Has anyone taking anti depressants for POTS? Has it worked for you? I can't feel any emotions besides hopeless and heartache
  13. I called the ER yesterday and they said if my symptoms get worse I need to come in but it's not getting worse, just staying the same.
  14. ANCY (or anyone who knows)- It happened Sunday and now it's Thursday. I still have a headache and a neck ache if I move around but not when I lay down. statesof- the derealization is my newest symptom and I hate it. I feel dead. My wife has been doing research on how to overcome it so now I'm trying to do her tips: Get outside more (which is especially hard bc of the lumbar puncture) Think about the present (not the past or the future) Don't dwell on any thoughts starting with the word "why" Don't think "I am sick" Etc I don't know if it's going to fix it but I'm praying it will.
  15. I read this story about a POTS sufferer who recovered by going to a seminar and trying this program called Dynamic Neural Retraining Systems http://wheelchairtorollerblades.com/2014/02/02/my-recovery-from-chronic-illness/ Just wondering has anyone tried this? The in-person seminar is thousands of dollars but the DVDs are only $200-300. I was thinking it could be worth a try.
  16. My symptoms have been worsening over the past week. It was so bad on Sunday that I went to the ER. I told them I have constant head pressure, brain fog, derealization (those have been my most prominent symptoms lately). They did a CT scan and then a lumbar puncture. Now in addition to my "normal" symptoms, I have a headache and a stiff neck. Has anyone had a lumbar puncture and experienced this? How long should it last?
  17. I just saw a hyperbaric therapy center in town today, and was wondering if anyone has tried that? Any experiences, positive, negative or neutral would be good to hear before I ask my doctor about it.
  18. I get tingling and numbness in fingertips too, usually just 2-3 fingers on my right hand (and sometimes in my feet). I always worry about stroke but reassure myself by putting both hands out in front of me. If I can hold them level, I'm not having a stroke. And I have fatigue as well.
  19. I have eliminated - soy - gluten - dairy (except occasionally a little raw cheddar cheese) - basically all grains I eat organic, pastured meat and eggs, salads and nuts. And tons of water and Himalayan salt. I still have symptoms but have definitely improved since the onset of symptoms.
  20. The head pressure is so awful! Hope you all feel better!
  21. Is POTS too much blood flow to the brain or not enough? My cardiologist said it seems I may have too much blood flow to the brain but I thought POTS was not enough blood flow to the brain? My doctors still have no clue what's causing all my symptoms but I really feel like there is excess fluid in my head. I don't know if it's a CSF leak, sinus problems, ear problems or just excess blood. A lot of people describe their POTS as light headed and say the blood pools in their legs but I really feel heavy headed (although I do get lightheaded too). My biggest symptoms currently are head pressure and fatigue constantly. 24/7. I've got more symptoms than I could possibly list but those two are my biggest obstacles daily. None of my doctors seem to be as concerned about finding the source of the problem. I just wish I could get some answers.
  22. My doctor recently found out that I have the MTHFR gene which means I can't properly absorb b vitamins such as folate and b12. My doctor thinks the underlying cause of my POTS could be a b vitamin deficiency. I've been taking a supplement formulated for my genetics and I think it has really helped. My symptoms of head pressure, fatigue, brain fog has improved. My tachycardia has been better as well. But the new symptoms I've noticed is my heart feels more like its "bounding" sometimes. Not always fast just hard. Also I've developed dizziness. I prefer this to how poorly I felt before but was wondering if anyone had any similar experiences and new if these new symptoms meant anything specific or if they are temporary while I rebuild my stores of b12?
  23. Does anyone else have these symptoms: When I'm laying down and I lift my head it feels like it weighs 50lbs, and the back of my head feels tingly like the blood isn't circulating properly. If I lean on my arm, it falls asleep incredibly quickly. I feel like I just don't have enough blood. Also I noticed that when I pushed myself and went out 4 days in a row, my hr was better each day (as low as 70s and 80s when standing) but Saturday I stayed home and when I stood up my hr was racing again (145bpm) and I felt miserable. Any ideas why that is?
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