Primetime

Nina:

Thank you for your reply about the cool suit. I see that there are several versions on the website -- a lite version, etc. This will be my first time buying one of these. Do you have any recommendations as to which kind might be best for me? -- I am 5 foot 7 inches and 145 lbs.

Thank you

I am looking for some type of cool suit or cool jacket. -- what I mean is that I am looking for something to wear that will keep my body cool when I am outside in hot weather. I had heard that they make some type of jacket that keeps you cool. Please help. Thanks. Shane

My hemoglobin and Hematocrit is always low when tested. I went back to my PCP to ask him if I could raise this to normal, would it help my orthostatic intolerance. I really did not get an answer. This week when tested, My hemoglobin is 13.4 and my PCV is 40. My iron profile was normal. the iron in blood was 86 the iron binding capacity was 378, the iron saturation was 23, the ferritin is 79. The erythropoiten level has not come back yet. I am unhappy with my Primary care doctor. he is not an attending doctor. He is still a resident. Whenever I ask him a question, he never gives me a direct answer. My question is --- With my iron test showing normal, should I try taking an iron supplement to raise my hemoglobin and PCV levels? What about B12 and folic acid supplements. I asked my doctor to check my B12 and folic acid levels. He said that the blood tests came back normal. However, when I got a copy of my records, he had only checked my iron levels, there was no blood work done for B12 or folic acid. I have not had a chance to question him about his yet. He is a complete stooge. Sorry if I sound like I have a lot of venom. It is just I am really frustrated with this doctor. I researched the matter on the internet. It seems like it might be dangerous to take iron supplements with a normal iron level. My doctor gave me no advise on what to do other than, "iron supplements could be dangerous". He gave no advise at all on how to raise the hemoglobin and PCV levels.

PLEASE HELP

Do any of you have any experience taking nitroglycerin for your chest pain?

I cannot tolerate nitro. It makes my chest pain must worse (instantly). It also speeds my pulse way up (about 60 beats a minute more ) and it also makes my blood pressure go up a lot. I was given it several times in the hospital and this was the effect each time. My doctor does not understand why nitro does help my chest pain and in fact makes it a lot worse.

Does Nitroglycerin have this negative effect on any of you.

The type of dysautonomia I have is POTS and OI.

Thanks

Primetime

What are some things we can do to make our bodies make less epinephrine?

I know not to drink caffeine and eat chocolate. But is there anything else?

Thank you

Primetime

Thank you very much for your kind replies

Primetime

Thank you very much for the replies.

I am glad we can help each other on this board.

Primetime

I spoke to my dysautonomia doctor today by telephone. He mentioned to me Takotsubo as a possible cause of my chest pain.

He indicated that I would probably be evaluated soon with a cathetorization.

Have any of you heard of Takotsubo or been diagnosed with it? It is a little long to explain it here, but if you would like to read about Takotsubo, feel free to "google" it. A lot of information will come up.

My doctor mentioned that he may ask me to come off of my beta blocker "cold turkey" ( all at once ) before coming in for testing. This is going to make me feel terrible. I did this once before before autonomic testing and I had multiple PVC's and chest pain. And at that time, I was only on half the dose that I am now.

Have any of you people came off of your beta blocker all at once?

I just mean -- as I understand it, we with POTS, etc. don't get enough blood flow to our upper body when we stand, especially for long periods. I was wondering if there was a way to check the blood flow in our hearts when we stand?

Good Luck in Florida. Let us know how it turns out.

Primetime

Is there a test to determine if blood flow to the heart is below normal. Not a blockage type thing, but just that not enough blood is flowing through the heart. I had a doppler study done on my head about 10 years ago at Vanderbilt. It showed a 40 - 50 % reduction upon tilt.

My echocardiograms on my heart have been normal. Not esophageal echo but just the non invasive kind.

Primetime.

This post is similiar to my other one I know, but I am desperate for some help.

I need to exercise, but it makes me so sick. It's not really what happens while I am exercising. It is my system not calming down

after I finish exercising. It's like my system stays overstimulated. I get chest pain (main problem) and the breathlessness remains.

It can last for a couple of days. I get so mad and frustrated. Because when my system gets really over stimulated, I can't eat.

It just makes the chest pain worse. I don't get any answers from my doctor on this.

How do you all help keep this overstimulation from happening to you? What causes it?

I can't simply stop trying to exercise, because that makes my POTS so bad that I can't function.

Please let me hear from you.

My main problem with exercise, ESPECIALLY with cardio exercise is not dizziness. It is -- I stay in that state of stimulation; I call it overstimuation; for a very long period of time after the exercise is over. It can last days. It is like the sympathetic nervous system does not calm down. Has any research figured out what causes this yet? I thought beta blockers were supposed to suppress this. My beta blocker helps but not NEAR enough. I take atenolol 25 mg every 12 hours. If I also take a 10 mg propranolol about 2 hours before a workout it helps more. But I really can't work out much at all. No cardio at all and only a little weight lifting. Only a couple of sets every few days and then I can't eat for several hours afterward. The cardio stimulates me so much that it is like I am going to have a heart attack with chest pain afterward.

I also have problem with arrythmias.

Does this overstimulation after exercise affect you guys also?

Thank you for your replies.

My main problem is the chest pain and chronic feeling of overstimulation that takes forever to go away after exercise. Although I do have arrythmias as well.

Please keep me posted on your situations as well.

A quick follow up to my post.

The only heart cath I have heard of before is one that checks for blockages.

Have any of you heard of a cathetor checking on the things that Dr. Robertson mentions. I don't really understand what those things are that he wants to check. If any of you have any input on this, please let me know.

thanks

Primetime

MSG and garlic has also caused me trouble since I developed dysautonomia. I failed to mention this in my original post. Do these two things bother any of you?

Thank you for replying to my post. I am glad to hear you were able to build up your exercise time. That is very helpful to us with dysautonomia.

Do you wear the hose while swimming? How long did it take you to work up from 2 minutes to 45 minutes.

Is there any other websites for discussing dysautonomia besides potsplace. com, and ndrf.org ??

thanks

Primetime

Perhaps it is the stimulating effects of the chocolate. I have not been able to eat chocolate since my dysautonomia started. It makes me tachycardic and have chest pain. I ate some a few months ago, even though I knew from experience what would happen, and I paid the price. I did enjoy eating it, but I got chest pain and had to take a beta blocker to alleviate the pain.

I have had dysautonomia, POTS, OI for about 15 years. I also have an unknown to my dysautonomia. I see a prominent "dysautonomia" doctor. I keep in regular contact with him. However I do not have a cardiologist that I see. My doctor, Dr. David Robertson told me that I have more of a cardiac or heart component to my dysautonomia than any of his other patients. He has spoken to Dr. Raj and Dr. Campbell (two cardiologist) on my behalf in the past. Dr. Robertson feels that it may be necessary to do the following: Below is a partial copy of his email:::::

" Ultimately, however, I think we will have to pursue the cardiac implications of your illness more thoroughly. I attach a note I put into your chart based upon your visit last week. I have placed it in the context of the review of your medical history you and I worked on several months ago. Be sure any physician you see gets a copy of this.

As you will note, in discussions I have had this week with Dr. Raj and Dr. Campbell, I believe we are moving toward a need for a cardiac catheterization. Since it is extremely unlikely that you would have any atherosclerotic lesions in your coronary arteries (the usual reason for coronary artery cath, it must be a catheterization that will address non-traditional issues in the causation of cardiac pain.

It would need to examine not only coronary artery

to anatomy which is almost certain to show little or no atherosclerosis, but also

perhaps coronary sinus assessment of catecholamine, neuropeptide Y and perhaps

histamine to determine if there is selective targeting of the heart with

sympathetic activation which may be causing his illness."

END OF EMAIL

My question to you all is -- Do you think that I should have a cardiologist that I see regularly involved in my care? Do most of you see a cardiologist? I think I would feel more comfortable if I did have one.

Have any of you had the type of catheterization like Dr. Robertson is considering doing on me?

Cardio exercise of any type has always made me very sick. Much more so than resistance training although that is bad also. It does not matter if I am in a pool swimming or on a bike, etc. What happens is kind of hard to describe in a way -- but -- it is like -- the feeling you get when you are really exerting yourself, like running, you feel that burning in your chest from breathing heavy, your heart is beating fast and you are breathless . I know these are normal sensations while performing cardio; however, when my cardio work is over -- these symptoms never go away completely. It's like my body does not calm down. If I make the mistake of eating within several hours of finishing the cardio, I get really bad chest pain that can last for several days. I can't do much of anything and I am breathless for up to 5 days after doing cardio. I also can feel abnormal heart beats during this time -- often associated with a feeling like I am going to pass out or "white out" - my vision grays out. Taking extra beta blockers helps somewhat but does not stop it. It's like my heart is starved for oxygen or blood or something. Do any of you have similiar trouble?

Lately I have been trying to start resistance training (again) , but even with that it's like I have to take baby steps. Spacing the workouts out for apart. Not doing each bodypart but about once a week. Not doing but a couple of sets each training day. I am only doing legs at this point. I can't squeeze any more body parts in. It's too much of a physical tool. I'm taking more beta blocker now that I am working out. It's been a roller coaster for 15 years. Sometimes I get nervous that I will have a heart attack or that my body is just going to "quit" on me.

Do you have similiar experiences on exercise?

There are some foods that really bother my POTS. I wanted to talk about vinegar in particular. When I eat salad dressing containing vinegar or eat A1 steak sauce (which also has a lot of vinegar) on my steak or Hot sauce like from taco bell, I get really orthostatic and it can last for several days. I get breathless, and my pulse goes up a lot when I stand. I get chest pain as well. I usually have to up my beta blocker for a day or two if I decide to eat one of these things. I do not do it often. And everytime I do it, I feel so bad, I say to myself that I am not going to do it again, but every once in a while I do. I get so sick of not being able to eat what I want. I, long ago (years) figured out that it was the vinegar in these things makig my symptoms worse. Long ago, I even tested this by taking in a little pure vinegar which resulted in the same symptoms. Does vinegar bother any of you ( make your OI or POTS symptoms worse ). I have not read any material stating that it is supposed to make our OI worse but it definately affects mine in a negaive way. But I have read that vinegar is supposed to lower blood pressure.

Look forward to hearing from you.

Thanks for the reply. I was evaluated at Vanderbilt a long time back for POTS. I was found to have a low blood volume and POTS. Before going to Vandy, I have a workup by an endocrinologist. The Endo's exam turned out to be normal. My current meds are Atenolol daily and propranolol for breakthrough chest pain.

Florinef gives me really bad headaches. I see that you mention that licorice can increase blood volume. I did not know this. Has there been any studies on that licorice issue?

How would I be evaluated for a mitochondrial disorder?

Thanks

Primetime

I was wondering if there has been any word of "good treatments" of POTS coming in the near future.

I have POTS and considerable chest pain. I would love to see some good treatments come along.

The only thing that helps me is drinking plenty of water and beta blockers. My POTS doctor told me that I have more chest pain involvement than any of his other dysautonomia patients.

I can do a few minutes of cardio exercise and I am sick for 4 or 5 days.

I'll tell you; it gets REAL frustrating at times.

take care and have a good rest of the day.

Primetime