nmorgen

Sorry to hear about your set back. What is your pulse doing when your bp is low? I get this sometimes myself. I'm on clonidine, so I don't know about the beta blocker. I know that for me the clonidine doesn't really lower my bp, but it does lower my pulse. You should call your prescribing dr and see what they think about the beta blocker and the symptoms you are having. You might be a little dehydrated, so up your liquids. I hope you get to feeling better.

Like ajw described, I also have a familial essential tremor but have developed an orthostatic tremor since POTS started which is probably due to the elevated norepinephrine levels. The carvedilol I take for my chest pain has really helped the tremors too. If I'm late for a dose, I start dropping things and knocking things over. Other helps for the orthostatic tremor is all of the things that help POTS (hydration, avoid stress, etc).

I have a resting tremors that tends to move around, sometimes in my legs or my torso, ect. These tremors tend to be very fast. I also sometimes get an orthostatic tremor and drop things. I can't tell you how many dishes we go through, lol. Ive found a few things that help, but nothing truly stops it. It's annoying and uncomfortable, but I have just learned to live with it. There have been several posts on tremors that you might find helpful. Good luck and I hope you find something that helps.

Hi avidita,

I don't know what is causing the pulse drop while standing, but I had the same thing happen to me a few months back. My sitting/resting pulse dropped low and my pulse wouldn't go above about 80 after standing and walking around. My bp was pretty high at the same time and I felt really bad. I posted the symptoms on the forum, but nobody else seemed to have anything similar happen to them. Mine has resolved so far, and gone back to the normal pulse spikes while standing and walking around. Which type of POTs were you diagnosed with? I am hyperadrenergic. I also have the tremors. They vary in intensity and come and go without warning.

I was treated at UAB before I moved to Switzerland. My cardiologist was willing to work with me and suggested I go for testing at Vanderbilt. I kind of wish I had been able to go. If your insurance will cover it I would look into it. Good luck with your drs.

So sorry to hear about your bad appt. I agree that you should probably look for another dr. It's not worth waisting your time on a dr that doesn't listen or isn't willing to help you.

Here if my list of foods that I have a problem with:

gluten - which includes wheat, barley, oats and rye. You really have to read labels to avoid this one.

lactose - I use an enzyme when I eat dairy to help with digestion. I don't eat it a lot though.

tomatoes

mackerel, bonito and tuna

corn - I try to limit it b/c I tend to get bloating if I eat too much.

pork - my panel didn't show an allergy, but I get sick everytime I eat pork except for bacon.

I don't drink anything but water and occasionally tea. I have also tried to eliminate all processed foods except for my GF stuff. I also eat certain organic fruits and vegetables. There is a list online with a ranking of pesticides found in food. I usa organic for the higher fruits/veggies on the list to cut down on pesticides.

Sorry, I have know idea why it posted this 3 times.

I started doing regular walking last week. I have tried to keep my heart rate at about 125-130, which means I'm walking at a brisk pace. The only problem I'm having is that now my pulse the rest of the day is dropping, but my blood pressure is really high. I'm taking clonidine and it keeps my pulse at a good rate, but it doesn't really drop my blood pressure. I have had the problem with it dropping my pulse really low and increasing my bp. I'm just wondering if I should cut back on the clonidine to keep my blood pressure lower? My sitting pulse has dropped to about 69 and my bp is around 132/91, and I'm feeling the pressure headaches. I feel like I'm in a catch 22 situation. I like that my pulse has dropped, but the bp increase is really bothering me, ugh. Anyone have any advice? I'm thinking about taking some magnesium to lower the bp. I'm just confused on what I should do. I just really hate the pressure headaches with my bp being this high. It also bothers my utricle when my bp rises and I feel like I'm in a rocking boat. I don't really want to quit exercising, b/c I know it's good for me, but I am getting discouraged.

Maybe I can manage by dropping the clonidine dose? If my pulse continues to stay low maybe I don't need to take as much. I know that when I started this whole finding out whats wrong with me journey they put me on a myriad of bp medicines b/c I had standing hypertension. I ended up stopping them all and started taking 750mg of magnesium and it kept my bp in check. I'm wondering if I could start taking a smaller dose of magnesium like 250mg and dropping the clonidine.

I'm just looking for advice. Has anyone else tried dropping their clonidine dose? Has anyone else had this problem when they started exercising?

Thanks to everyone who responds.

I'm so sorry that this has happened to you. I've read that divorce is like a death. You go through the same type of mourning process, so I think it's normal that you are mourning your old life and relationship. Healing takes time. I hope your life starts to look up and you find happiness. I agree that you should look for a support group.

I've got you in my prayers.

Hugs,

Natalie

I have the hyper POTs. I know that norepinephrine is involved in converting glycogen to glucose and stimulates glucose uptake. Maybe the large amounts or sensitivity to norepinephrine is messing our systems up?

You could ask to be tested for IR or just talk to them about being tested for various metabollic problems. The specialty would be an endo.

As far as low carb diets, I just can't stay on them very long. I feel like total poo, and I really have no energy along with horrible headaches and dizziness. Maybe if I stuck it out past 2 days that would go away, but I feel so bad that I can't seem to push through it. Maybe if i could be knocked out in the beginning, lol. Has anyone else tried a low carb diet?

I spend probably 80% of my day sitting down. I read or I get on my laptop. Sometimes I watch tv or movies, but my mind tends to wonder most of the time. I have found comedies easier to pay attention to though. I have to admit it can be pretty boring. I try periodically to get up and do something, but then I find myself either dizzy, tired or just plain feeling bad again. I have found great at home jobs online, but you have to live in the US. I would like to do something, but just can't seem to find anything productive or profitable to do from home.

Hi nowwhat!,

I wish I had some answers or advice for you, unfortunately I don't, but I do hope that you start to feel better and find someone or something that helps. I wish I actually knew my glucose levels. I have been tested numerous times and always been told that it was normal. This last time my cardiologist did a 24 hour fast test and tested my insulin levels as well as glucose and told me that I have insulin resistance. Exercise and diet change are the only things I was told to do.

I also have sfn in my feet. they have no idea why, but I think it might be from blood pooling when I stand. I do notice that sometimes my feet will turn red. I also noticed last year when I got dehydrated that I lost blood flow to my toes. They turned completely white and numb. That was after my QSART test, so I'm assuming my neuropathy probably got worse. I don't have pain or burning all of the time, so I'm thanful for that. I do use nicotine, which promotes blood vessel growth and it has helped my feet, but it might have helped me on my way to IR, who knows.

Oh, I also use my arms to help me get out of a chair. My shoulders kill me at night after getting up and down taking care of 2 boys. I'm really considering doing muscle strengthening exercises for my legs. My cardiologist doesn't want me to, but I think it's something I really need to start.

Anyway, I hope you feel better soon.

Health Science Administrator in the Office of Orphan Products Development at the

Food and Drug Administration said that The FDA Office of Special Health Issues has indicated that all comments/complaints/concerns regarding the proposed withdrawal of midodrine from the market should go to one number or website: 1-888-INFO-FDA (888-463-6332) or DRUGINFO@FDA.HHS.GOV. They are keeping track of all phone calls and e-mails.

The decision to withdraw the approval of the applications will be made by the Division of Cardio-Renal Drug Products following receipt of the comments to the Notice for Opportunity for a Hearing. So it's not for certain that a withdrawal will occur but knowing the level of impact will be important to document that decision.

The Doctors at the FDA that are in charge of removing Proamatine from the market are Doctors Woodcock and Stockbridge. If you want to send them letters:

Dr. Janet Woodcock

Director FDA/CDER

10903 New Hampshire Ave

Silver Spring MD 20993.

Dr. Norman Stockbridge

Director Division of Cardiovascular and Renal Drugs

10903 New Hampshire Ave

Silver Spring MD 20993

Even if you have sent a letter to the FDA, you might want to print a new one addressed to these individuals.

I found their email addresses if you want to email them and write them a letter. norman.stockbridge@fda.hhs.gov & janet.woodcock@fda.hhs.gov

I guess I need to add a probiotic. Does anyone from the UK have a good online source for probiotics? It's hard for me to find vitamins here in Switzerland. I can't imagine how hard it will be to find a probiotic.

The nicotine can act as a vasoconstrictor and vasodilator. It can act as a stimulant and relaxant. It really depends on the delivery. I have found very interesting research on nicotine. I'll try to find some of the other articles I have looked at and post them. Here are a few articles. http://health.howstuffworks.com/wellness/drugs-alcohol/nicotine-health-benefits.htm http://www.wired.com/science/discoveries/news/2007/06/nicotine I do use nicotine and it gives me more energy. i have to eat beforehand b/c it does tend to make me a little sick to my stomach.

Last year I was getting pvcs like this. It seemed almost constant and they were strong enough to knock the breath out of me. I was put on a monitor for a month. My cardiologist told me that they still weren't close enough to be ventricular tachycardia, thank God. I could have been put on a beta blocker, but they really mess with my asthma, so I didn't want that. I was also a little dehydrated, so that could be your problem. I still get them, but not all of the time. I also found that coughing helped to stop them when they started getting bad. If you are worried ask to be put on a monitor to find out how close they really are, and try to keep hydrated as that really made mine a lot worse. Good luck and I hope you feel better.

I also get the severe bloating. When I went GF it helped, but now it's back and I have no idea what is causing it. It can get so bad that it causes tremendous pain under my ribcage. My pulmonary dr told me that one side of my diaphram was higher than normal. I' thinking that is caused by the severe bloating. I wish I had an answer, b/c I know it is horrible. I've been wondering if anyone has had any luck with probiotics? I' also taking motilium which has helped with the constipation, but I can still get the bloating without constipation. Very frustrating.

You definitely need the cardiac TTT. I also passed the 10 min neuro TTT, but they said I was symptomatic as my pulse went to 29, but it wasn't conclusive. The cardiac test was conclusive as my pulse began to skyrocket the longer I was up and my pulse pressure narrowed signifigantly along with getting hypertension. It was funny b/c I was actually having a really good day and felt fine during my TTT. I told my mom when I came out that I think I had passed and didn't have POTs, lol. I was wrong. Even though I felt fine that day my body was still POTsy. I really don't think you can rule out POTs with the 10 min test. I think my problem is that I have the hyper POTs and my body doesn't usually just jump into hyper as soon as I stand. It takes a few minutes to get that norepineprine circulating and my heart responding to it. Of course my body doesn't just settle down after sitting or lying down either, b/c the norepineprine is still circulating through my body.

I do have the small fiber neuropathy in my feet, but the rest of my body sweats like mad. I think it's great that you have no nerve damage. I get a lot of pooling in my feet and I think that might be my problem.

When I had my stress test 3 weeks ago my cardiologist told me that I wasn't deconditioned b/c my heart rate responded normally until the bike resistence really kicked in and then my heart rate soared. He told me that if I was deconditioned my heart would have taken off from the beginning, so maybe that was the thinking your neuro applied. Regardless, I would still try to find a cardiologist who could do the cardiac TTT. Good luck.

I just wanted to add that I do the nicotine also and it does help me. I think it acts as a vasodilater.

I forgot to comment(brain fog) on the small fiber neuropathy. I have that, but i didn't know that it could cause higher glucose levels. Makes me wonder if it is throwing my glucose numbers off.

For a few years now my hbA1c has been high normal of just slightly abnormal - ranging from 5.9 to 6.1 So I guess that means my avg. daily sugar is about 124 to 128 or so. My fasting blood sugars are usually now about 115. My glucose tolerance test - the 2 hour kind had me at 115 fasting and I drank the stuff and then 2 hours later it was 118. So while never having been told officially I'm diabetic - those numbers to me suggest that it's time to do something/anything to correct them -- as I'm staring diabetes in the face. With diabetes your fasting needs to be 126 or higher. So my numbers aren't staggeringly bad - but I'm being tested for things now that can relate to having higher than normal sugars such as small fiber neuropathy. I am in the midst of a major weight loss overhaul - and exercise program to enhance the healthier eating. I think for optimal health I will purchase a few books or read some articles on what comprises a 'diabetic' diet. I know some basic do's and don'ts - & a bit about foods high in their glycemic index or low....but by no means am an expert at it. So till I read that - I just do my best with a reduced calorie diet loaded with 5/day fruits and veg, lean protein, decreased fat, whole grains etc... No one has ever mentioned insulin resistance - but a doc recently said this was likely 'pre-diabetes' - I do have abdominal fat and hypertension - so those 3 in combination are not anything to fool around with I'm told.........

Good job with the exercise!

Issie - Luckily they don't use cornsyrup in Snickers or soft drinks over here, just regular sugar. I know that hf corn syrup is really bad. I thought that it was suppose to be eliminated from US foods at some point. I don't eat a lot of sugar, but I don't think I could cut it out completely right now. Good for you for stopping eating sugar.

I am trying to follow the old Richard Simmons Deal a Meal diet as it was originally based on the American Diabetic Associations exchange list. I'm just going to use lower GI index foods for my fruits and breads. When I looked into this IR every website recommended exercise, so I have to stick with the exercise. I really have no choice. I know I don't want diabetes.

nowwhat!- I have had those type of glucse test and I was always told that mine were fine. My GYN did want me tested every year, so I now wonder if it could have been a little higher, but not diabetic levels. I know that I usually felt really bad after drinking that stuff though. This last test was 24 hour fast and I didn't drink any of the solution. They did a blood draw and not the prick.

Thanks everyone for the encouragement. I just have to remember to make myself do it everyday. I think that is going to be my hurdle, actually keeping up with it.

I just wanted to let everyone know that I ordered more of our Changes DVDs. I will make them available for free once I get them. Please check www.dinet.org in a week or two for order information.

Thanks,

Michelle

What if we ordered them before when they were offered for free, do we need to re-order them, if we didn't get them?

I also ordered one a few weeks ago. Do I need to reorder?

Nmorgan, I would love to hear your blood sugar history. What tests did your doctor do to come to the conclusion that you have IR? There are a few of us on the board that have "extreme" sugar issues regarding hypos. I know me and Vemee have this year been tested for an insulinoma, that's how bad out hypos get. Would love to compare tests/labs.

I didn't get a copy of the tests. Next time I go I will ask for a copy. he told me that my fasting test insulin levels were high, but my glucose was normal.

issie - I guess he told me to take a piece of candy b/c when my bs does drop I do pass out, and it happens really fast. One minute I'm ok and the next I start shaking and that's all she wrote. I bought Snickers bars to take on my walk. They are low on the GI index, but they do make me feel better. It isn't that hot here right now, but it is sunny. I grew up in the South and I tend to feel ok in the heat(unless it's over 90 and then I need ac). The really cold weather seems to make me worse.

Update - I walked over 45 min today. I actually felt really good until I started getting hot and I burned over 700calories according to my Polar. I ate 1/2 a Snickers bar during the walk and never had a problem with getting hypo. I came home and made dinner and now I'm starting to get tired. i'm not hungry though. I had to force myself to eat.

A few months back I was having this same problem. I actually feel worse when my pulse is running that low moving around. My blood pressure was usually really high at the same time. I don't know what was causing it. I drink water all through the day so for me it wasn't hydration. It went away, but I still haven't a clue what was causing this. I had a theory that it was my dose of clonidine, so I cut back a little on it.

Can someone write a generic letter stating the problem that we could all copy and paste and send to legislators? I agree that this is political and has nothing to do with the drug itself. I think the FDA just picked a drug with limited distribution to see if they could get a way with it.

Thanks for the replies. I am going to start a regular exercise routine. I'm not overweight, but I wouldn't mind losing a few pounds. Hmm my dr didn't advise me to start a diabetic diet when I asked him. I do get hypoglycemic episodes and he told me to carry candy with me when I'm exercising. I usually get hyperglycemic after physical exertion or if I haven't eaten in a few hours. I can't go very long without eating or I will pass out. I don't think it's the POTs b/c the symptoms feel a little different, but who knows. I'm hoping that the exercise will help me, but I am willing to try a lower GI food plan. I'm celiac and I would still like to enjoy some GF food, but I can't find any information on where any of it falls on the GI index. Hopefully, if I only partake of GF goodies occasionally I will be okay. I don't want diabetes. I guess I'll see if my blood work improves after starting the exercise program. I have to go back after 3 months of exercise. My exercise is to walk 45 min everyday. I might start a little slower the first week or so, I know I don't want to over do it. I was planning on using our bike, but my cardiologist thinks that while it is still sunny I should walk outside and try to get natural vitD as I'm always deficient. 45 min walking in the sunshine, people keep me in your prayers.