Patricia

Proactive success story here! I have struggled with acne since I was in 5th grade and am now in my 40's. My skin is very sensitive. For me, I use many of their Gentle formula line, but I would start out on their regular line, if you choose to try it, and play with it. If you get dry, back down its per day uses. They have a deep cleansing wash for the body that would be great for you and I actually prefer to use this on my face a couple of times a week. QVC's web site has a number of five piece kits that include this deep wash cleanser for half the price if you were to buy them individually. Go to www.qvc.com and write in Proactive under search. Good Luck! Patricia

As someone who has been severely afflicted for 20 years (undiagnosed for nine), and still continues to face disparaging comments from doctors uneducated in dysautonomia, I wish to extend my profound gratitiude for your offering legitimacy to some of our unanswered questions. Thank you Doctorguest for what time you are able to contribute. THANK YOU!! Patricia

Donna F- do you know what the name of the drug is? Tanzanite, I literally can not BREATHE in the heat when it gets humid and in the low 80's. I have not gone to town some summers for THREE months when it has been unusually hot as town is 25 miles away and what would I do if something happened to the car or ac? All I can guess is that my blood pooling has gotten so severe. It is very depressing. I wish I still lived in New York!

Get your vitamins from a health food store. They are more costly, but will never have straight sugar, definitely not chemical based sugar products. Try Nature's Plus adult chewable vitamins also as an alternative Patricia

Dionna, There are alot of tapes out there on relaxation. It is what seems to fit you best. There is Progressive Relaxation that teaches you to go through all your muscle groups and relax them, there is Imagery where you invision yourself in a beautiful, relaxing, safe place. There is also Mindful meditation or simply deep breathing. You can do these sitting or reclined. Just do not worry too much about getting your breathing EXACTLY how some of the tapes want you to because it can precipitate symptoms for some. Let your body tell you what works. Do you have a "new age" book store nearby? Or just trying Barnes and Noble. I would try a tape before a book as the tapes will have a voice to guide you through the process. Some here may have links to direct you to specific practices. Hope this helps! Patricia

Who would have thought so many of us have this problem? I appreciate you folks posting so I know I am not the only one out there......sometimes you can think you are just going crazy with all these different symptoms varying day to day. I have done relaxation techniques successfully at times during these days, but when I am upright again it seems to kick back in. Atleast I can break the cycle at times even if only for a short while. Too bad there is not that "magic" pill to make alot of this stuff just go away! Thanks, Patricia

I am glad to hear I am not the only one who does this! I just wish we all had an answer to control it. I have taken extra Ativan at times and sometimes it does not help. Maybe I need to get permission to take even a bigger dose of it. ANYTHING to have it stop! Thanks everyone. Patricia

Hi everyone. I have Hyperadrenergic POTS and NMH. There are days that I am feeling "better" than others and I feel I am able to do more so I do! Then this feeling of speed sets in and I cannot recline and relax for more than a few minutes before getting up again, nor look at the TV and relax because everything feels in high gear. I can get anxious and feel I cannot breathe as this goes on. It is a vicious cycle until, usually in the wee hours of the morning, it finally settles down. The next day I am CRASHED with fatigue and chest discomfort. Do any of you get this or something similar and what helps? I take Inderal and Ativan for POTS. I do not tolerate Florinef or Midodrine. Thanks Patricia

All I can say is that you are not alone. I have suffered from crushing chest pain for many years. Sometimes it is just a scarey pressure in my chest that also will last for days. If I get upright, it worsens. My doctors too have not offered me anything for relief which makes it very difficult to cope with. I think the only thing that will improve chest pain is improvng the degree of dysautonomia. Good luck! Patricia

I struggle everyday with the boredom; I think being housebound is more frustrating than the constant symptoms.....which of course I wouldn't be housebound if I didn't have the symptoms! Anyways, I also read rotating fiction with non-fiction ( love to learn anything!), I clean, play with my dog Sara alot, and I have put in a bird garden near my birdfeeder and bath. We got pretty new outdoor furniture including a sofa to put on the screened in porch which is next to the "bird" area. I can look at the garden and watch the birds for a long time. I appreciate many forms of art and am trying to find something in this area I could create as I am not talented! Sometimes, I just take on a small project and then slowly work at it ie. buying fabric for some pillows and finding a style I like. By the way, love HGTV network!

I am so sorry to hear all that you are having to cope with. My thoughts and prayers to you for a speedy recovery. Patricia

Goodness.....I have the exact situation, but my GP said I did not need iron because the iron levels were normal? Do you remember your Ferritin number? I believe mine was 48 which I was told was low, but not below "normal" levels. I read an article where a physician treats for a level 45 or below. I have always wondered as I am borderline to this. Do you have other symptoms other than hair loss? Patricia

If they do not feel you have POTS, could you have Idiopathic tachycardia? This is a fast heart rate with no understanding as to why it started. They feel there is an "irritant" in the electrical firing of the heart. I know a woman who has this and has great fatigue and dizziness. Her heart rate is high and sometimes more so when she is lying down. She sees an Electrophysiologist who has her on a beta blocker and anti-anxiety med( for adrenalin surges ) right now. If she worsens she may need an ablation. She is only able to work a few hours a week and go for walks vs. exercise as the exercise wipes her out. So, though she does not have POTS, she is quite affected by her condition. Hope this gives some insight. Good luck! Patricia

In order for me to try any new medication for my POTS, I have to use a compounding pharmacy to make the infant doses you describe as I am unforntunately severely reactive. Just call your local pharmacist if you have a question. You probably just need to measure with a teaspoon or something similar. They can give you a syringe without the needle if you need to measure even more specifically. I am glad you found a dosage to help you Patrica

Hi Lauren, Just reading your post got me anxious as I am always concerned about getting stuck in an elevator mostly because of the HEAT! I am so reactive to even mildly warm settings, that I do not even make appointments in the summer where there are elevators because the minute I get in one in the summer I feel my air is cut off. God bless you for getting through this. I wish there was some kind of device that blew cold air in us like an oxygen tank (mini) that delivers oxygen.....just so we could carry it in the summer in case of an emergency. Heal fast. " I love my body. I love my body....." SUCH a struggle sometimes! Patricia

Hi LuLu, To answer YOUR question tonight I had a serious virus that left me disabled. I was diagnosed with CFS for a long time and then took part in a Johns Hopkins study on CFS! that found many of us have dysautonomia. When I looked back at my symptoms, I always had POTS from day 1 after my virus, so indeed for some, what is what or do you have both? I have immune system bloodwork that is abnormal that is considered diagnostic for having CFS. I read that Dr. Grubb had alot of patients with CFS go to him looking for a diagnosis of dysautonomia after the study, and although some were very ill, not all tested positive. Until there is an actual blood test for CFS I do not think any of us will know for sure. That is my thoughts on it anyways. Patricia

Hi Lulu and OLL, I am on Inderal and Ativan for "adrenalin." I am trying to get on Mestinon right now. I did not tolerate Florinef or Midodrine. The question of asthma was raised, but what I describe to the doctors they say is not asthma. I know this is not medically correct, but what it FEELS like is that my lungs also dilate and do not constrict to let me take a breath in at all. There is no wheezing..... and it can happen immediately when I step outside especially into a humid, hot day when the air is so thick. I feel I am suffocating within a couple of minutes and run back into the air conditioned house to breathe. This is the only time of year I have this problem. Pooh. But thanks so much for your suggestions. Patricia

Thanks everyone, I know it does not make sense about the Inderal, but it just seemed my intolerance to heat got worse after being put on it. My reaction to the heat is just so severe I would do anything to find an answer.

Hi Amber, Thank you so much. Are your problems with heat severe too? I am in Virginia and when it gets really warm, I am too nervous too even go in a car with air conditioning as sometimes that is not enough to get the car as cool as I need it. I hate living in such fear and want to enjoy the warm sunshine ( at some level ) that we look forward to all winter here. Patricia

Hi everyone, I am someone that literally cannot go outside in the summer..... I get severely symptomatic and am unable to take a breath in when it is > 80 degrees and humid. I was wondering if anyone had ever heard that being on a beta blocker, I am on Inderal, could make us "pool" blood more in the heat? Patricia

Morgan, I am so sorry to hear how ill you are as I have been there frequently and still am one of the more "afflicted" on this forum. I have never had the opportunity to be hospitalized more than one day for research testing, so if I had the opportunity I would take it. I do wonder if the primary physician heading your hospitalization could find out if he could consult via the phone with one of the autonomic specialists? If it is explained you are too frail to even travel, could one of them offer suggestions to your primary while you are hospitalized or how to interpret the tests? As busy as Dr. Grubb is, maybe another one of his colleagues would be willing as they seem to be a compassionate group. Don't give up HOPE..... Patricia (sending my prayers to you)

When I started Inderal, I had been undiagnosed for over 8 years and was similar to you Radha. It was very hard to get on, playing with the dose (I only take 5-10mg. at each dose- baby dose) and it took THREE months for my system to feel something was improving. Hang in there. Patricia

If you find an answer let me know. Unfortunately, I do not know there is one. I am very disabled from my POTS/CFS and know if I could tolerate some medications I could have a better quality of life. I have taken CHIPS of pills, drops of liquid form meds, and reacted badly to most everything I have tried. The reactions are different, so psychological has been ruled out. I do have an overactive immune system from my CFS and high histamine, so this is a theory, but there is nothing to do. I deeply share your frustration and concern. It is very frightening to try a new drug with our reactive systems. Best of luck, Patricia

I am so very sorry of your husband's report today. Both my parents were diagnosed with cancer within a year and are both doing well now. I prayed harder than ever that year. I will keep You and Jeff in my prayers. Patricia

Just trying to post again to see if anyone has had a doctor explain this and if there are any treatments........(or interventions). I don't think a cooling vest would help! Thanks, Patricia