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futurehope

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About futurehope

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    futurehope0819

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    Female
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    Clermont, Florida
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    the Lord Jesus Christ, reading, literature

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  1. I did Dr. Levine's protocol, as well as my own exercise regimen for three years. I was getting worse. I felt extremely weak and debilitated and finally went to a heart doctor to have myself checked out. Exercise has never benefitted me other than it helped me to exercise, but that did not translate to benefitting my daily living. So as of right now, I've quit. I will be talking about it to my cardiologist. Also, I am noticing marked improvement in my spaciness and in my weak, debilitated feeling by wearing 20-30 hg compression hose. I guess more blood is getting to my brain? So, obviously my circulatory system could use some help. So, for me, exercise resulted in nothing noticeable except the ability to exercise. BTW, through an bicycle exercise stress test, the cardiologist noticed a deficit in my body's ability to increase stroke volume during exercise. For whatever that is worth, I guess my body cannot compensate for the increased needs during exercise.....and this was after exercising religiously for 3 straight years. So there you have it.
  2. Yes, Sue. I get embarassed when I get out of breath talking on a telephone or in person. It's embarassing being such a sicko. I refuse to say, "excuse me, I have to stop talking since I'm out of breath."
  3. After having symptoms for years, I may finally have a reason. I am not 100% sure, yet, but will report back. I am a 63 year old female who has had symptoms for years. I also exercised for years and found minimal benefit, and increased fatigue. After my cardiologist reviewed my EKG, echocardiogram, cardio-pulmonary test, exercise stress test, and my symptoms, he suspects I have a case of microvascular-angina. Basically, he described it as a water sprinkler system having some of the holes plugged so that the water does not get squirted out. That may be how the vasculature of my heart is....a bit plugged up. The result of that is that my stroke volume does not increase as it should during exercise as seen on my CPT cardio-pulmonary test. Upon diastole, my heart does not get as much oxygen-rich blood as it needs, so my heartrate increases to compensate for the deficit. Also, this deficit can cause orthostatic intolerance and exercise intolerance. BTW, my echo, ekg, cardiac event monitor and stress tests were normal. It was the CPT test that picked up on my stroke volume deficit. What I will be doing about it: - aggressively addressing my high cholesterol with a big dose of Crestor - Undergoing 5 weeks of External Counter-Pulsation Therapy in which I will be wearing cuffs that inflate on my lower body during diastole while I am in a reclining position for one hour. This occurs 5 days/week for 5 weeks. The therapy can be repeated if needed. It helps the heart create new "open" microvascular routes. After therapy, the cardiologist will repeat the CPT test to see if I have improved. There is no direct way to "show" microvascular angina since it does not necessarily "show up", so it is a diagnosis of exclusion. FYI, the symptoms I have had for a while now despite exercise are: breathlessness, I cannot sing, and I can be out of breath doing nothing fatigue tachycardia dizziness on occasion exercise being of no benefit chest pressure on occasion Thought I'd put this out there. It may benefit someone. Anyhow, take note that the "usual" heart tests were normal. It wasn't until the CPT test showed my deficit that the cardiologist put all my symptoms together. I will see how all this goes down and report back if I am able.
  4. Thanks, Katie. I have a different experience than you. I found it more worthwhile to continue with Dr. Afrin. But I am glad he is a help to you.
  5. Katybug, Which MCAS doctor do you see? I was a patient of Dr. Afrin's, but he is relocating to Minnesota. He is currently in South Carolina, but obviously he is going farther away. Thanks in advance.
  6. Bring a refrigerated bottle of water with you when it is going to be hot. I do this. Bring the cold refrigerated bottle to your forehead, your neck, your face. Hold it on the back of your neck. You would be surprised how this helps. Drink the cold water slowly as well to cool down your core. You could wear a cooling vest. I do not own one but I have heard of them on this site. Spray yourself with water, especially your head and hair.
  7. 75 mg/2 times/day I am 62 years old and if I take too high a dose, the side effects become too much at my age.
  8. I don't know the answer to your question, but I wanted to comment. Doctors want to see proof of something before they do surgery. It covers them from malpractice. My first thought is, when these test were done that came back normal, were they done during an episode or no? IOW, how long ago were the tests performed? If it were me, I would get on top of this pain and make the doctors test me and find the cause. In my case, I flat out told the doctor that my GB was bothering me after fatty meals. After a while, the pain I had was constant. Luckily for me, the sono showed thickening of the walls, though I showed no stones, so I had my GB out and I'm fine.
  9. Do some investigating for PSAS (persistant sexual arousal syndrome). Also, check out pudental nerve entrapment which can cause problems. I would suspect that a uro-gynecologist might be of benefit, particularly one with experience with your problem (if it is indeed a "problem" for you. Only you know). I know of nothing about POTS that can cause this.
  10. Without going into details, I'll tell you where I am at with all this. I had tried the POT'S doctor, Dr. Benjamin Levine's, routine. It was very difficult. I went past the three months to six months which eventually wound up 45 - 60 minutes/day of aerobic stuff. I decided that even though it gave me a benefit, it was too much for me, and not worth the fatigue it was causing. I currently do 30 minutes/day on the treadmill at 3.5 MPH 5 days/week. I have many days where will power is the only thing that gets me through. Because of the difficulty, I will probably never go past the 30 minutes per day. I also do a 5 minute cool down. I also do abs and obliques 5 days/week. The strength training I do is only two sets of whatever machine I am on. I can do the upper and lower body all together after my walk two days/week, or do upper body two days and lower body two days after the walk. Six of one and a half dozen of the other of how I decide to do the strength training as to two days a week or four days a week. I take weekends off. As far as I'm concerned, my body is not normal nor never will be. I cannot do as other people and never will be able to. What I am doing already takes more will power to push through than when I used to feel more normal. So, in conclusion....I do what I am able because I have decided that something is better than nothing. Nothing means I am totally disabled with minimal activity. I am trying to avoid that by doing my exercise routine 5 days/week. Also, doing something allows me to be somewhat normal, though I would say that my fatigue level is nowhere near normal and probably never will be. I have good days and bad days, but never normal days. I cannot tell you what you should do because I have no idea why you're having the health issues you have. As for me, some doctors think they have a clue about me, but I still think they are in the dark as to cause and remedy. So.. I have made choices for me based on the fact that I have pretty much exercised my entire life and I don't intend to quit until I must. If I feel it is too much, I don't do it. It is a judgment call as to how much to push through and when to quit. Also, as for me, I am 62 years old, and most people my age cannot do much. As far as I'm concerned, I'm doing pretty well for my age and for my disability. I also do not expect to get any younger or more fit at this stage of my life. I'm trying to be realistic.
  11. Michelle, one of the moderators of this forum, left because of improvement. I believe her post is up top somewhere.
  12. Christyd, I believe you. Maybe someday I will experiment with this benzo again. It was the only drug that produced profound and noticeable results in me. ETA: I forgot to say....one of the reasons I shy away from benzos is that one of their side effects is depression.
  13. Actually, to add to what Chirstd said, Klonopin was the only drug that made my POTS noticeably better immediately. I was afraid to continue because my response to a benzodiazepine is that the "calming effect" of it wears off, and I would then "need" the drug. I mean....either I would have to stay on it at a higher dose to prevent nervousness and insomnia, or I would have to "get off it entirely", either of which is not pleasant. But for two weeks, i can honestly say that that was the only drug I ever took that made a difference.
  14. jkoconne, Back at ya...... I am currently on zyrtec, 1/2 pill 12 hours apart. zantac (75, just reduced from 150's) 12 hours apart generic singulair 1X/day cromolyn sodium - I could not do the starting dose my doctor suggested. I got a bad headache and crampy intestines and dizziness. I started at one eighth the dose for a while. Now I am at 1/4 the dose for a while. Still no benefit after one month of starting this, yet I have not given up. I am taking the med twelve hours apart before meals. I am getting the med from Clark's pharmacy in washington state in the powder form. I have to measure and put it in distilled heated water to dissolve it. It is currently looking unuseful at this time. Time will tell. I will probably remain on the other meds. BTW, be careful because you may react differently to different formulations of the same drug due to fillers and colorings. Summary: This illness has been extremely challenging. I may look fine, but be reacting and feeling poorly quite frequently. It's been years since I've felt somewhat okay. I hope you have better luck. I see Dr. Afrin at MUSC,
  15. Hi, It's 1:30 AM here, so I cannot stay on and write. I'm too tired. When I get a chance, I will share some of my experiences. I am a POTS person with MCAS , interstitial cystitis and irritable bowel. I have been experimenting for about 1 1/2 years with different meds. One of my current experiments is cromolyn sodium. I'll be glad to share with you tomorrow. I'm expecting a snowstorm here, and I should have time.
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