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Everything posted by Angela

  1. it's just a cuff that shows your sys/dia and pulse. I use the omron BP710, my neuro uses the omron as well, they have found it to be the most accurate. You probably already have one just wasn't sure my abbreviations? No, I never had a 24 hr ambulatory blood pressure test, I have woken up at night to see what my bp is doing but it is always kosher at night, just fluxes in the day when I am active. And.....I have never had symptoms of allergies, never been to an allergist or tested for mast cell anything but taking H1's and H2's has somehow improved my symptoms. I still have tachy and bp spikes but I think that got worse after I stopped taking the bb I was on, afterwards my spikes were higher than ever.
  2. yep, yesterday home with sick son and I'm not on any bb's but my hr stayed 125 for about half an hour, sitting/laying down, well propped up on a couple pillows on the couch just watching cartoons with son. (125 is unusual for me in that position as I hadn't been standing up) took motherwort (not even the maximum dose on bottle) with a glass of water and tachy went down within 20 min or so to 80's 90's.
  3. my bad, the 24 hr only showed my hr but I googled why hr only high during the day and normal at night and came up with pots, my cardio told me to get a 3 read hr bp cuff when I mentioned this concern and that's when we found my bp goes up.
  4. I would try seeing a neuro that performs other ans testing and is more familiar with pots? have you ever done a heart holter 24 hr? That is what first clued my doctors in. Also, when I stand my bp goes up as well as my hr, not down and I have been dx with hyperpots. Not everyone's bp drops, some of us our bp goes up. I never did the tilt table test as both my cardio and neuro said that not all pots patients pass out and when I called to schedule the ttt I specifically asked the nurse who performs the test what the criteria to get dx for pots via ttt.....she said to get dx I had to pass out. Since, like I said I have never passed out I decided to forego that test........waste of time and money.
  5. This is what I read: Symptoms of a Rathke’s cleft cyst: Sometimes these cysts do not cause any symptoms, but can be seen on an MRI. The most common symptoms include: Headaches Vision problems that cannot be easily explained Mood swings or behavior changes Weight change Diabetes insipidus but I found it here: http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pituitary_center/pituitary-tumor/types/rathkes-cleft-cysts.html
  6. Batik I have had both 24 hr eeg with heart holter and 2 week. The 24 hr showed my neuro that my resting hr/bp at night was normal and during the day both elevated enough to clue into POTS. Before that the assumption was silent migraines or siezures. I am funny though as most people notice when their heart races, I never knew mine did (upon standing) until I got the test. So if anything its a good indicator and medical documention that can hopefully get you to the appropriate specialist. the 2 week one was done later by my cardiologist I was referred to to rule out heart arythmia's. They also did an ultrasound of my heart to make sure nothing was wrong there.
  7. I have not been diagnosed with MCAS, I asked about it due to my bad reaction to the beta blocker I was described) but my current neuro simply told me that it is very hard to test for and left it at that. So I started zyrtec/claratin and after talking to one of my friends who goes to Mayo, as well as Issie I switched to allegra and pepcid. I actually take one of each in the am and the pm, I read on a MCAS forum that they are supposed to work better in combination. Anyway, I noticed that a lot of the neuropathic issues (tingling feet and hands, buzzing/tinitus) have gone away. I also have had more energy then prior to trying H1 and H2's. I am not on the gastrocrom or aspirin but will mention it to my neuro and see what his opinion is. I also noticed that my adrenal episodes have decreased and I have been able to cut down on klonopin as a result
  8. I was searching the forums to see if this topic had already been posted. I believe I am coming down with a cold (stuffy nose) and I can't keep warm with two long sleeve jackets (I live in PHX and it is 75 today, was 96 earlier this week). Is there any cold medicines that help get rid of a cold (not just ease discomfort) I have a relative coming over tomorrow and sons friends bday part Sunday so don't want to be too miserable or get anyone sick. Thanks-
  9. Yeah Issie I wasn't really factoring in the eds and even Rama I believe has ank spond so don't know if yoga would be an option for him either. But for the others of us who have just plain pots or mass cell issues then it's worth at least looking into, specially for those like me who can't stand up and exercise for more than a couple minutes.
  10. http://www.aeyt.org/resources/The%20Health%20Benefits%20of%20Yoga%20and%20Exercise%EF%80%A2%20A%20Review%20of%20Comparison%20Studies.pdf More in depth article - medical explanation from THE JOURNAL OF ALTERNATIVE AND COMPLEMENTARY MEDICINE
  11. Stretching helps to reduce the risk of injury- While most exercises put the body at risk of numerous injuries such as tears in the ligaments or tendons, muscle strains, bone fractures, and fatigue, stretching acts in the opposite way. It improves muscle balance around joints and increases the fluidity and range of motion of these surrounding tissues. Stretching also helps increase blood flow and provides increased amounts of much-needed oxygen to all areas of the body. Improved Range of Motion- Stretching will improve your flexibility which will give you a greater range of motion in your exercises. This greater range of motion means bigger bang for the buck on each rep of your exercise and greater efficiency in your workouts. Reduce Soreness and Stiffness- We all know the feeling of soreness the next day after a very intense workout. This soreness comes from lactic acid that is built up in the muscles as they tear and break down during vigorous use. Stretching releases that lactic acid buildup from the muscles which reduces the soreness, stiffness, tension, pain and fatigue in your muscles. Stretching also helps to lubricate joints which helps to reduces pain and stiffness in the joints. Yoga has been shown to lower blood pressure and slow the heart rate.A slower heart rate can benefit people with high blood pressure, heart disease, and stroke. Yoga was a key component to the heart disease program designed by Dean Ornish, MD. This was the first program to partly reverse heart disease through lifestyle and diet rather than surgery. In addition, Yoga has been associated with decreased cholesterol and triglyceride levels as well as a boost in immune system function. Yoga reduces stress- The combination of focused breathing and stretching during Yoga has a calming effect that relaxes the body and the mind. Studies have shown a host of biomedical responses from the body after doing Yoga. For example, there is a decrease in catecholamines, the hormones produced by the adrenal glands in response to stress. Lowering levels of hormone neurotransmitters -- dopamine, norepinephrine, and epinephrine -- creates a feeling of calm.
  12. Hi Kalamazoo, I never had the tilt table but I did have ans testing which my hr and bp didn't go up enough upon standing to qualify for pots. however, I was only laying down for 25 minutes or so and wasn't very symptomatic that day. My neuro still dx me hyperpots since I had a 2 wk heart halter and 24 hr eeg with heart halter showing what my bp and hr were doing. I also kept a 2 week journal for my doctor to review notating my bp and hr in the am before getting out of bed, and then upon standing and throughout the day sitting/laying/standing. I don't believe the TTTest is the only way to diagnose pots. I believe I have even read this on the internet before.....I was going to have it done this summer but the out of pocket was ridiculous and when I called the hospital to schedule, they said to dx me I would have to faint. They weren't going to inject the stuff like the mayo clinic and other ans testing facilities do, and as I have never actually fainted, (I only fall down) I said screw it to that test. I used to live in Kalamazoo when I was younger:) Now I am stuck in hot dry PHX!
  13. What do you mean by "warm up" ? I am confused. Are you talking about body temp?
  14. I actually have always had very good posture, yoga just makes it even better.
  15. I just tried oral motherwort for the first time today and my bp hasn't spiked nearly as high as usual since I took it several hours ago. No weird side effects either.
  16. I think yoga helped me out of my second flair. I didn't know I had pots back then so couldn't understand the lightheadedness (esp. in down dog) I was experiancing as well as the shakiness trying to get ready for work after doing 45 minutes of yoga but I pushed through and gradually my symptoms went away, took about 3 months. I was on no meds. This past (and worse) flair started back up after I had stopped doing yoga for about 2 months, as I was house hunting. Now I do 30 minutes of gentle yoga every night and it's mostly floor excercises but i believe it has been helping my symptoms. IDK why....maybe because stretching and the controlled breathing helps with nerves and circulation which us pots people have issues with. I believe good posture increases circulation too but I could be wrong on that. I know this question was for Yogini but thought I would tell you my experiance.
  17. It's not a cure but it helps me to put a gel icepack wrapped in a light towel behind my kneck/head. Also helps calm down my nerves.
  18. dont know if I have mcad but klonopin and magnesium seem to have improved me. Klonopin worked instantly to calm adrenal rushes but I started some vita supplements including magnesium as well as an h1 and h2 and have noticed some more improvement, I hope attributed to the vitamins and the antihystamines and I have been able to do 25 minute floor stretches and yoga. I'm not on any bb's either. You could look into motherwort, I'm going to purchase once I can get to a vitamin store but is highly recommended for its calming effects (same as magnesium and klonopin), and high heart rate, it's similar to a natural bb from what I understand. I got that tip from someone else on the forum.
  19. I wrap an icepack in a towel and sleep with it just under where my head meets my kneck. Helps immensely. Also stretching and yoga, at first you may be sore but I think it helps.
  20. Hey Issie, I wasn't referring to mcas. I def think there is a connection there with pots as well as autoantibodies. I was referring back to the fight about coffee being poisen.....as well as gluten free, other such diets, alchohol free etc. It's different for everyone because I think whatever is causing the pots effects our bodies in similar but different ways. I mean, most of us have the same symptoms albeit the different subgroups (high vs low blood pressure) but different theories on relief. I started the zyrtec and claratin 2 months ago and after a week I started noticing feeling slightly better. I'm going to give allegra and pepcid a shot now. I brought up mass cell to my neuro but all he said was that it is really hard to test for and left it at that. (I think he is irked because I wont try another beta blocker after my failure with propoponol) When I get some extra cash I am also going to purchase motherswort as you mentioned it helps you and has natural beta blocker effects... and I have heard the same from others with hyperpots. I am also gluten free for 5 months now but didn't notice any relief doing that. Sometimes I can drink coffee, sometimes I can't. Wine usually bothers my tummy but vodka doesn't. I don't notice a difference between gatorade or lotsa water. I started easy yoga since mostly floor exercises cause I can't stand up and work out like some can. That seems to be helping but I think it also has to do with focusing on breath which calms the nervous system plus strenghtening core/leg/spine muscles.
  21. i dont think that anyone got pots from being allergic to anything. the allergies and intolerance to certain foods or whatever comes individually from whatever is causing the pots.
  22. I read this on another forum, http://peoplewithme.com/thread-1097.html hope that was okay to post. Was just interesting what CTD was researching
  23. Issie, my friend goes to your doc and he is telling her to do the same mast cell treatment, he didn't do any tests for it or anything. Weirdly enough, when I look up mcad the symptoms are the same as POTS it seems. Is it one and the same? and do you know why your doc wants allegra and pepcid over zyrtec and claratin?
  24. I didn't have a complete micronutrient panel done but I asked my neuro to test for pottasium, vitamin D, already had vitamin B done previously which was fine (I had already been taking vitamin and magnesium. It turns out that my magnesium came back low (he didn't say how low) which is funny as I already took 300 mg. of magnesium per day. He told me to up my dose. I would like to have a complete panel done. It would be interesting. I already was taking COQ10, pottassium, , calcium, vitamin D3, vitamin B12 and 6 and magnesium when I did the labs.
  25. The reason I am asking this is I work and people (most) who don't get my condition constantly ask with no ill intention "how are you". I want to say I feel like **** and want to go home and lay down but I am sick of being negative and a downer, and don't want to be viewed as such. Anybody have any good ways to avoid replying with the truth that I feel horrible without lying and without being a debbie downer? I don't want people to think I feel peachy keen either.......! Just something funny or neutral. Thanks.
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