helenhz

I have found it to be very difficult to communicate my symptoms to a doctor. I have tried written lists - the doctor usually glances at it briefly and then hands it back to me. If I try to tell them all my symptoms, they usually interrupt me to move on to something they think is more important than what I have to say. The best exception was with the my electrophysiologist who finally diagnosed my POTS. When he started to ask the right follow-up questions, I knew he understood what was going on with me. In general, I assume that doctors have the attention span for about three symptoms and those have to be presented in "sound bites". If they pick up on what I am saying, reflect it back to me and ask for more details, I know I am with a doctor who is listening and taking me seriously. If not, I assume I am in trouble with the doctor. In those cases, it is unlikely that I will return for another appointment.

I was up to four 100mg capsules three times a day when I had to just stop taking it. My heart rate was over 100 bpm almost all the time no matter what I was doing and I was getting dizzy on standing. I wasn't doing much better at lower doses either. The clincher was when I started to have an irregular heart beat and strong palpitations with significant chest pain. I have been off it for a few days now and I am still trying to recover from the effects. I am disappointed because this was my last medication to try - I've been through all the others with no success. . Sorry that I can't be of much help, Ronnie.

I've been on it for a few days now and the results are mixed. After initially dropping to 69/49, my blood pressure seems to be staying up a little more than usual. I am also a little less lightheaded when standing. The major drawback has been that my heart rate is above 100 much of the time which makes me feel ehausted. I'm hoping that if I stick with it a while longer, my body will adjust and the good parts will outweigh the bad. It took me four months to finally get a prescription so I am very committed to making this work.

Sorry if this has already been posted. I found it very exciting news. http://sro.sussex.ac.uk/53760/1/Structural_brain_abnormalities.pdf

It sounds like you have been able to come up with some novel ways to get your brain working again. Neuroplasticity is a wonderful thing if you can figure out how to develop new pathways. You seemed to have been able to master this using your own expertise of what is right for you. A book might not be a bad idea - I haven't been able to find many that were helpful. I was having visual-spatial problems too (I kept getting lost driving around town) until I stopped trying to think about what I was doing. If I just relaxed and let my natural sense of direction take over, I did much better. I think it is a left-brain; right brain thing. I may try experimenting with some of your reading ideas. It is still a problem for me.

No, I wasn't tested for Human Growth Hormone - I'm curious to know more about why that might be important. Yes, I would be very interested to hear more about your TBI rehab. There is so little that the medical professions have to offer for this. (I agree with you about internet anonymity.)

I had a traumatic brain injury 6 years ago when a shovel handle snapped and hit me in the middle of my forehead. I have had cognitive and neurological problems since then. Over the years, I started to have POTS symptoms as well and I was finally diagnosed about 2 years ago. The neurologist I saw at the Mayo Clinic said that it is not at all unusual for someone with a brain injury to also develop POTS. I don't know of any connection to hormones - mine all checked out as fine.

Meditation has been very tricky for me. I find that deep, diaphragmatic breathing and relaxation actually trigger my tachycardia. I kept trying to go back to it for the many benefits of focusing my mind and for my spiritual practice, but was getting more and more discouraged. Finally, I worked with a yoga therapist who figured out that if I concentrate my breathing on my upper chest and not my diaphragm, I do much better. My therapist says she has noticed my breathing has gotten much deeper even though I never attempt to make that happen. In addition, instead of trying to relax my body, i concentrate on feeling the energy coursing through it. If I forget and just let my body totally relax, I am usually brought out of it quickly with an elevated heart rate. My yoga therapist is always trying to find ways to work with me and what she has come up with is the opposite of everything she has ever learned.

Yes, naps really do me in, but even more so is meditation or any kind of deep breathing relaxation techniques. There is no surer way to get my heart rate up than to be really totally relaxed.

I went to the Northwest Pharmacy's website, found Ivabridine and scanned a copy of my prescription to them as part of the checkout process. It takes a number of weeks for the medication to arrive because it has to go through customs first.

I was able to order it online from a Canadian pharmacy with my doctor's prescription. It cost me about $45 a month. Unfortunately, it never really worked for me and I stopped taking it awhile ago. Hopefully, you'll have better success.

I just started the first head cold that I've had since the onset of POTS and it has thrown me for a loop. My blood pressure is all over the place, my heart rate is up all the time, lots of pre-syncope and just feeling miserable over all. Is this what it's usually like and if so, what do you do about it?

I had an endoscopy and colonoscopy done over the last few weeks and the hardest part was recovering from the sedation (propofal). I am extremely sensitive to any medication and I knew this was going to be difficult for me. With the first test, the nurses insisted on getting me up and out the door before I was at all awake. I couldn't even keep my eyes open but nevertheless, they threw me in a wheelchair and dumped me into the car. It took me days to get over the "hung over" feeling and my thinking was very foggy for at least several days after. With the second test, I had a wonderful nurse who let me sleep it off. Usually, people are awake after a few minutes, but she let me sleep for close to an hour. By letting me wake at my own pace, it made a significant difference in the time it took me to recover. I was a little tired throughout the day but by the following day, i was just fine. It is so hard to get medical professionals to listen and believe you. I told them that I was going to have trouble with the sedation, but it was only after I proved to them that it was a problem that they responded. I hope you that you find good folks who will listen to your concerns and try to do what is best for you, not just assume you are just like everybody else.

I hope your counseling psychologist is giving you some good advice about how to deal with these "attacks". What you are saying to yourself about what is happening can make all the difference between feeling panicked and riding it out. If you can sit back and watch what is happening and tell yourself that it is just adrenaline and it will pass, you might find yourself more at ease. I know that sometimes when I feel real agitated and my heart rate is pumping, i just sort of monitor my body with a sense of fascination at what is going on. I hope you can find a way to get through this.

I found an excellent yoga therapist who was able to design exercise routines using yoga poses that meet my particular needs. The up and down movements of most exercises were really bothering me and the deep breathing associated with most yoga was triggering my tachycardia. Now i do a series of exercises all on my back one day and all on my stomach the next. I also no longer breathe through my diaphragm but I focus on my upper chest. These simple modifications have made a significant difference in my ability to exercise and I am getting stronger all the time. At this point, I'm not sure if it has made much difference with most of my symptoms, but I at least have more energy and a better feeling of well-being over all.

I don't really wake until about 1pm each day. It's worse on days when I get more sleep.