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  1. I have low pregnenolobe levels just found on blood work. This beta blocker is crushing me with fatigue. I will ask them about the other drugs you mentioned
  2. I have had high diastolic numbers recently close to 110. I am on beta blocker now and ut rocked my bp way down but trying to get thru side effects of the beta. I know at 110 on diastolic I feel bad blurry vision headache dizzy faint. All of the above. ill keep you posted as I try to find a solution. I feel way more relaxed on the med and more comfortable just trying to get thru side effects
  3. Yes but what holtorf is saying is that cfs and pots is secondary usually to something else. Like you said it could be hormones, infection, lyme, mold, allergies, autoimmune. Thyroid function is important. Lyme is often missed because a negative on basic bloodwork does not mean you are negative. You need to work with a specialist like holtorf. Also eating right can help reverse autoimmunity.
  4. My experience with meds is that they just control symptoms they dont get at the cause. I am currently working with Holtorf Medical group in California. They believe 80% of all cases are due to chronic lyme disease. I cant stress enough that we all have to figure out what the cause is. Controlling symptoms is important while we look for answers. Anybody here have any experience with treatment for lyme or co infections?
  5. Yes for me mornings are the hardest. I typically feel better in the evenings like later from 7 pm on
  6. So you got off beta? What are you all taking now?
  7. I had a TTT done in 2012 and it was supposedly normal. Even though my heart rate shot up. last year, in 2016 I had a TTT done by an autonomic specialist and I do have POTS and dysautonomia for sure. If you think you have POTS, I recommend buying a blood pressure /heart rate cuff for your wrist. Omiron is the brand I use and its usually $50 you can order online. Its pretty accurate so start taking readings and recording. If you give me your readings, I can help give you some direction. Take readings resting, then after 3, 6 and 10 mins standing. If your heart rate goes up 30 or more beats a minute then you have POTS. Also look out for your b presdure bouncing around because in my experience that can make you feel poorly. If you do have issues, work with your doctor and show him. Depending on results perhaps he can recommend a beta blocker or other appropriate med. getting a diagnosis is first step and easy part but finding right meds is hard. I am diagnosed but still not well. Also if you have a holistic doctor that will look to see whats causing your issues perhaps you can gey to root of problem. you can message me personally if you have questions. Thanks
  8. So after talking to doctor hes suggested a beta blocker to bring down BP. Ive been on a couple days but im dizzy and my fatigue is worse. Also, my legs feel weak. My sister is a pharmacist and says this can happen with beta blockers and it could take a couple weeks. looking for input on other peoples experiences with the side effects?? Do they eventually subside? Dizziness just wants me to lay down so far from functional currently.
  9. I have started on beta blocker but I am feeling exhausted on it. And I do agree that my body is just trying to get blood to my brain!! Im going to go low and slow on the beta blocker though. I hear it takes a couple weeks to adjust to it. I do think im hyper POTS as I get anxiety and wired and tired feelings frequently. Is anyone on beta blockers? How long till I level out and feel an ounce of normal? sean
  10. Hello all, hope you are hanging in as this is not easy! I wanted to get some input about blood pressure in POTS. I understand pots is diagnosed with heart rate. My heart rate seems to be controlled by the iva bradine but I cant help but notice that my BP jumps by 30 both systolic and diastolic when standing? Does anyone have any recommendations on what to do? I suspect that is what is making me feel so bad!! specifically bp is 115/68 laying and 150/100 standing. thanks, Sean
  11. Ok all of this is very much appreciated. I will start loading salt into my diet!! And drinking more cocnut water..
  12. How do I find out what my insulin situation is? I know some people with ME/CFS have diabetes insipidus. I suspect I have a metabolic/ endocrine issue. I can log but I dont know what to look for. sean
  13. I have not measured salt. Thats a good point! How do I track my salt and get it to the right amount?? thanks!!
  14. Hello all, I recently started eating like a champ. I am eating lean protein, fruits and veggies, hydrating with Pedialyte and coconut water and I am still way lightheaded and feel tightness in my chest. I take Ivabradine to control HR but what can I do to alleviate the orthostatic intolerance? Adderall I can not tolerate and I am looking for an answer. I saw Dr. Barboi in Glenview but maybe I should go back? I really need to address the lightheaded almost faint feeling? Any doctor or suggestions are helpful. Thanks, Sean
  15. Hello everyone, Hope this post finds you better than before. I myself am still very fatigued and experiencing the fun orthostatic/lightheaded/dizziness issues. I did see Alexandru Barboi here in Glenview, IL. He is a knowledgeable guy and did confirm my POTS. However, it seems his only answers were to slow the heart rate using beta blockers and then use a stimulant like midrodrine to help with lightheaded feelings. I tried the beta blocker and felt worse so I switched to corlanor (calcium channel blocker I believe) and that has slowed my heart down but Im still exhausted, weak and lightheaded. I have not yet tried a stimulant. How has midrodrine worked for everyone and has it helped the orthostatic intolerance - the lightheaded weak feeling? Also, what doctors do you all recommend seeing for POTS/CFS. I would appreciate any good recommendations and also insight on the stimulant class and how it works for this illness. Keep fighting & we are all in this together, Sean
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