griffism

I am looking at a lot of different home made recipes. http://www.dfwcfids.org/healing/gokhmbrw.htm This is one that I was given by a member of my local support group.

I am looking to eliminate gatorade and powerade from my diet because of several questionable ingredients in those drinks. However, I need a replacement for these in my diet, as my POTS is not going away anytime soon. Any ideas? Stefanie

I have heard of a cooling vest from a number of people. I have heard pretty good remarks about it. Might be worth a try. I think sweating is right up there with brain fog in the list of most annoying symptoms. Stefanie

Sue, Your experience sounds to me like Raynaud's Phenomenon, which is characterized by a red, white, and blue color transition of the skin. I don't know much about it, but I do know that your experience sounds like the textbook definition. Might be worth looking into. Stef

This happens to my feet all the time and always happens to my hands when I take a shower. It seems to me that it is blood pooling in the limbs that is causing this discoloration, which is why you may associate the purplish color of your hands with the coming of a POTS episode. If too much blood is in your hands or feet, then not enough is in the brain, and the human body doesn't really like that very much. Stefanie

Thanks for the response! I am going to look into getting one. Stefanie

I always buy Bolthouse Farms Chocolate Protein shakes because they taste great, I can get them down when nauseated, and they have 30g of protein. They have been a great help for me. When I first got sick, I went from 115 pounds to 94 pounds in less than a month because of an inability to eat. These protein shakes saved me from an NG tube. Also, Gatorade and pickles are definitely on the list. Stefanie

I was wondering if any of you know whether or not the Fitbit requires the use of a chest band in order to track your heart rate. Along with POTS, I, also, have EDS. The chest bands on normal HR watches leave bruises and sometimes leave blisters. I am looking for a better alternative that is also accurate enough to tell me when I am pushing too hard and need to dial back when exercising. Stefanie

Welcome to the forum everyone! Don't hesitate to ask questions. There are no stupid questions here. Stefanie

Thanks for the support everyone! It means so much to me to have you guys. I will keep you posted on how the surgeon appointment goes. Stefanie

I have an appointment with a surgeon in two weeks! Fingers crossed that he is willing to take me on and perform the procedure! Stefanie

Your leg pain sounds like it is blood pooling related because when you are in a seated posture, the calf muscles are not working to push blood back to the heart. However, when you are walking, these muscles will contract and consequently will reduce the amount of blood that is pooling in your lower extremities. Blood pooling can be quite painful because as too much blood enters the blood vessels, they begin to irritate the surrounding nerves. I would try wearing compression stockings when you are going to sit for a long period of time. Also, you could try to elevate your feet at least to waist height while sitting in order to reduce the amount of blood that gets trapped in your legs. Let me know how it goes! Stefanie

Whenever I am "normal people" sick, my meds do not work at all. Stefanie

For me, I live in brain fog almost all of the time. It is my understanding that brain fog is due to a reduction of cerebral blood perfusion. The reduction of blood flow to the brain results in a decline in the overall functioning of the brain itself. This manifests itself as brain fog. If the reduction becomes too great, then we enter confused states, where we may be unable to recognize or remember things that are familiar to us normally. If this reduction of blood flow becomes a lack of blood flow, then syncope occurs. The only thing that has helped me with brain fog is IV Saline. I get 2 L of normal saline once a week for now until I get my port placed. After that, I am going to go to three times a week. IV Saline makes almost all of my POTS symptoms significantly better, to the point that I feel 95% of my normal self. Stefanie

Thanks for the responses! I am going to see a rheumatologist soon so that I can be tested for mast cell and for SLE. I will keep you guys posted on what I find out. It will be interesting to see if this phenomenon is something other than POTS. Stefanie

I was wondering if anyone on here has experienced a red, splotchy, flat rash over their entire body or at least most of it when they are finished with a shower? I always have this type of rash after i have taken a shower, but it usually goes away within just a few minutes. I was wondering if anyone has any ideas as to what it could be? My thoughts are that it could be a heat rash or an indication of a potential mast cell condition on top of the POTS. Stefanie

Thanks for the responses! I am going to look for a general surgeon in my area and keep my fingers crossed. Stefanie

Whenever I am sick, my medications do not seem to work nearly as well, if at all. The first sign for me that I am getting sick is bad vital signs throughout the day. I have a virus right now, and this morning my pulse was 101 resting and my BP was 108/69. When my vitals are like this, my brain is usually really foggy. As for being tired, I usually find that the palpitations and tachy make me tired, not the other way around. It will be interesting to see what others say about this topic. For me the brain fog is the worst symptom I have. I hope I have made sense as I am in major brain fog right now. Stefanie

I think that this is the first time that I have posted, so I will give a brief overview of my condition. I was diagnosed with hypovolemic POTS almost two years ago. I have tried all of the medications in any combination that you can think of. The only treatment that has helped me feel remotely normal is IV saline therapy. As a result, I am hoping to get a portacath placed so that I can receive this treatment regularly. However, I, also, have EDS-Classical Type, so I am hoping to find a surgeon that is familiar with EDS. I was wondering if anyone knows what type of surgeon places a port? Also, I was wondering if anyone knows of such a surgeon in the Dallas or Houston, TX area? Any thoughts are greatly appreciated, as I am hoping this will allow me to go back to school. Stefanie

I tend to have one good day then several bad days. On the good days I can usually be up an about from about eleven until around six pm, after which I am exhausted and crash. On the bad days, it is hard to get out of bed or do much of anything.

Wow I had no idea that anyone else had experienced this! When I was first symptomatic, I had this every night and it drove me crazy. However, I no longer have this because I take a bedtime beta blocker called propranolol. Before this, I had a heart rate of 160 sleeping at close to 4 am (according to telemetry in the hospital)

I was diagnosed a year ago in March. It has been a battle ever since. However, with the proper treatment, I have had progressively more "good" days than bad days.

Westernmass, Yah, I am pretty good about keeping myself hydrated. I usually drink Gatorade/PowerAde with dissolved salt tablets in them throughout the day, as well as smart water to get away from some of the sugar. Also, I monitor my BP because I am on midodrine, but my BP hardly ever reaches normal (120/80). Thanks for the feedback! I am going to check in with my POTS specialist to see if he thinks they are migraines or not. I will keep you guys posted

Over the past few days I have had a headache that seems to be around the temple area. Also, it gets worse when I stand up, which is strange to me. I am wondering if I have a sinus infection or if this is just another lovely POTS symptom. However, I have had no other signs of infection besides the headache. (no fever, cough, etc.) My current diagnoses are POTS, EDS, Gastroparesis, and PCOS. I was wondering if anyone else has this symptom? If so, should I be concerned? Also, if you do have this symptom, have you found anything that has enabled you to get some relief? Stefanie

Ctat333, Yah, the 16 tubes was all at one time, but after that I got fluids, which is a potsie dream lol. For anyone else considering seeing Dr. Suleman, I would definitely recommend it!! I have gone from not being able to get out of bed to back in school (almost full time-11 hrs) working towards my biology/pre-med undergraduate degree! Although my life is not like it was, I would be content if it did not get any worse than it is now! As far as meds is concerned, every person is truly individual with what works for them. For me, the two most helpful things have been propranolol (a beta blocker for my non-restorative sleep disorder) and midodrine (vasoconstrictor for my BP and HR). However, I still struggle with EDS pain and gastroparesis issues. I am hopeful that I will get a handle on some of the other issues that I have in the near future! If you have anymore questions about Dr. Suleman, let me know! Hope this helps Stefanie