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I had the creepy crawling feeling when I first started midodrine, but for me it has gone away completely. The migraines are more concerning, though. Are you monitoring your BP on midodrine because yours could be a little high with the side effects that you seem to be having? Hope this helps Stefanie

Have you considered Midodrine? It is a vasoconstrictor, and it has helped me a ton! I am 19 so I feel your pain! It is terrible being sick all the time. Hope this helps

If your doctor gives you the option, I would choose midodrine (taken 3+ times daily) over fludrocortisone because, in my opinion, midodrine has been the key to regaining some of my independence. Hope this helps Stefanie

I have never heard of an NSAID and beta-blocker interaction. I cannot take NSAIDS because I am on fludrocortisone, but if I wasn't I would be able to take them. I totally understand the need for pain med for "feminine issues" as I have PCOS, which can lead to extremely painful cycles. Right now, I use Tylenol, but I need to find another option because Tylenol is bad for your liver. Hope this helps Stefanie

Welcome to the forum! I am taking Propranolol (Inderal), a beta blocker, at night for tachycardia that I have in my sleep, which also seems to help control my heart rate in the morning a little. Also, I am taking fludrocortisone, which helps with BP, and midodrine, which helps regulate my blood pressure and heart rate. Of all of the meds that I am currently on, midodrine and Inderal are by far the most successful in treating my POTS symptoms. I have taken metoprolol in the past, but it is far too strong for me (my HR was in the 30s on it). Hope this helps Stefanie

I have been seeing Dr. Suleman for a little over two months now, and the results are amazing!! I have been out of the hospital for about three months now, which for me is really great because before that I was on a pattern of one admission a month that usually lasted about four days. With regard to the first appointment, you will, first, have to fill out a huge form about all your medical information. Then, you will be taken to a back room for vitals and an EKG. After that, you will be taken to a patient room, where you will be seen by Dr. Suleman. Dr. Suleman will ask you to tell your story about how your illness started and so forth, as well as what your current diagnoses are if you have any. Then, he will do a thorough examination, including the Beighton scale if he suspects EDS (Ehlers-Danlos Syndrome). After the examination and discussion of the situation, he will decide what series of tests that he will run on you depending on what he suspects is the problem. For me, I had three full days of testing, including a tilt-table test, a test to determine if you have a hole in your heart, two balance tests, a pain test, a sweat test (Q-Sweat), an Echocardiogram and other sonograms of your legs and neck, as well as a stress-echo, and maybe a couple more that I can't remember right now. Once these are completed, you will come back for a follow-up to discuss the results, and then you will probably go for blood work (16 tubes the first time!) Right now I see Dr. Suleman every two to four weeks for close monitoring. I am so glad that you found Dr. Suleman! He has changed my quality of life more than I could have ever dreamed of! Hope this helps Stefanie

My favorite pre-made shake is the Bolthouse Farms Chocolate Protein Shake, which basically tastes like chocolate milk...(I love chocolate!) I drink it every morning that I am capable of putting something in me, as well as I can use it for supplement if I am not able to get enough calories throughout the day. Hope this helps Stefanie

I use an arm blood pressure cuff on a regular basis, especially in the morning when I want to see if my meds have worked well enough for me to be able to safely take a shower or get up. Also, it is helpful to determine when I should be in bed because my BP is too low and my pulse is too high. I think it helps prevent me from having syncope episodes, as the number of episodes that I have had now that I use the blood pressure cuff is much less than before. While they might not be entirely accurate because my vitals are all over the place normally, it will still give me a ballpark estimate that I can use to determine what I can and cannot do, as well as what my next move is. (i.e. drinking more Gatorade, eating something salty, etc) Hope this helps Stefanie

srb- I use the Sodium Chloride 1 Gm 100 tablets by Consolidated Midland Corp because the extras in Thermotabs make me sick. So, the plain sodium chloride works better for me and dissolves easily in Gatorade with or without calories depending on how my diet is going that day. Hope this helps Stefanie

I have noticed that when I have a virus or a bacterial infection of some sort that my POTS symptoms get much worse, as well. I am not entirely sure why it is that way, but it is much easier to get dehydrated when you are sick. So, the worsening of symptoms might be due to dehydration. Also, my POTS specialist told me that he would hydrate me when I get sick, so that the period of time when I am ill will progress quicker and with more ease, which further fuels this thought. I agree with Chaos, in that I don't think that I will ever be able to drop Dysautonomia from my list of chronic illnesses because I have not had a "normal" day since my onset of symptoms. Hope this helps Stefanie

Yah, I am not sure why stairs are so terrible for Potsies, but they can make me short of breath like nothing else. I usually don't avoid them either, but I try to take my time going up the stairs because that seems to help lessen the increase in my heart rate. Hope this helps

I usually try to buy either the low calorie Gatorade or the zero calorie PowerAde because of their salt content. However, I also buy pure salt tablets from Amazon and let them dissolve in them so that I can further raise the salt content. It works really well to keep me hydrated and tastes really good!! Hope this helps

My first diagnosis of non-specified Dysautonomia came from a cardiologist, so I would try to see a cardiologist. Although, my true diagnosis of POTS came from an electro-cardiologist who specializes in POTS. In my opinion, I would go with a doctor specializing in POTS first, but if you cannot find one, then I would go to a cardiologist. Hope this helps

I am currently a full-time pre-medical student, and I can say that it is a struggle. However, for me, school is the best part of my day. It is the part that allows me to be even remotely normal. So, if your daughter can manage going to school on-site, I would definitely recommend it! I filed for disability with my school, so nine hours is full-time for me. I am currently taking 11 hours, so I am over full-time for a student on disability. Also, even though I am on disability, I get to keep my scholarships that I received before I became ill. Also, I can get extensions on exams and assignments when I am not up to taking and or completing them. Hope this helps

I have also heard that node ablation was contraindicated in POTS patients because I was interested in the procedure when I was first diagnosed. As far as fludrocortisone is concerned, I think it helps me some, but I can say that the biggest improvement that I have had with regard to quality of life is the addition of midodrine. I have so much more energy! It also helps with my high heart rate, which is much more stable at this point. While I am not a doctor, I would definitely say that midodrine is something you should do some research on to see if it is right for you. I am not sure if it affects Chiari-1 malformation, but it is always worth asking your doctor about! Hope this helps

Hi June, I currently go to Dr. Suleman, who is an electrocardiologist. He is in Dallas, Texas, which is far from New York. However, after only a month of treatment I am starting to feel like my old self again! I would definitely recommend him for the treatment of your daughter, as he does a thorough work up, including total autonomic nervous system testing and additional testing to determine the cause of your daughter's POTS. Although Dr. Suleman is great, I can tell you that seeing any specialist in Dysautonomia is far better than seeing a doctor who doesn't know anything or much about POTS! It was the best thing that I ever did. Good Luck and I hope your daughter gets the help that she needs! Stefanie

My meds came first. This is because while the doctors that were treating me were not familiar with POTS they did know that the family umbrella, Dysautonomia, existed. So, they assumed I had some type of Dysautonomia, which they treated with fludrocortisone and metoprolol. After my POTS diagnosis, I changed my beta-blocker and added Midodrine!