nmorgen

My new cardiologist had me take a stress test last week. It was on a stationary bike. As long as there was no resistance my hr increased to 125, but as soon as it upped the resistence it shot to 198. He told me that it came down like a normal heart and he feels I should be able to start using our stationary bike, but with no resistence. I asked him about doing some muscle building exercises and he told me no. That it would probably cause adrenaline surges and make my POTs worse. Has anyone tried muscle building exercies with adverse reactions?

Unfortunately I'm not on a BCP, so I guess I probably am in perimenopause. I feel that I'm too young to be going through it also.

Hi Issie,

Here is a link to the product that I have http://www.drugstore.com/products/prod.asp...WELAID=61263185 Thanks for any information you can provide.

I can't take any type of steroid. My body swells, especially my face and neck. My internist in the US said I looked like a person with Cushings. I had horrible stomach pains and it caused my liver enzymes to become high. If it hasn't helped with your ear problems I would definitely ask to be taken off. Maybe you can call an pester the GI's office and get in to see him sooner. I hope you start feeling better.

Hi Cat Lady,

I also have very low estroidol. The dr at the Mayo told me I was probably in perimenopause. My local OB/GYN didn't really seem to make much of it. He gave me a prescription for an estrogen the you umh insert, ya know. I don't know if it has caused more problems. I do know that my periods are quite heavy, but only last 2 days. Wish I knew more myself.

Thanks Angela,

Hopefully her dr just misunderstood what she was talking about. My mother is going with her on Monday and will talk to the dr about POTS. Fr now my grandmother is on bedrest, because she is feeling so bad.

I have hyperadrenergic POTs. My grandmother and my mother both have similar symptoms. Today my grandmother went to her dr, because the dizziness has gotten really bad. She mentioned to the dr that I had been diagnosed with Hyper POTs. The dr told her that she couldn't have POTs unless she had a spinal cord injury and that my POTs was caused by my scoliosis. WHAT!?! So now having scoliosis means you have a spinal cord injury? And you have to have a spinal cord injury inorder to have POTs?

I really don't care for choclate either, but over the past few months I crave it also. I have read that chocolate contains a high level of magnesium and that cravings could mean you have a magnesium deficiency. When I start craving it I take a magnesium supplement and it does cut down my cravings for the dark high calorie stuff. I gained 10 lbs over the winter b/c I felt compelled to eat several bars everyday.

As far as the energy levels, I haven't really found anything that really helps. If I know that I will have something to do I usually sit around on the computer a few days before, vegetating, so that I will have enough energy to actually do something. I have to say that my energy levels have definitely dropped over the last few months. I used to be ale to go on vacation for a whole week(ex Paris in Feb) and walk almost all day without feeling horrible the next day. This past week we have been travelling around Switzerland and after 3 days I needed to take a break and rest all day. I couldn't believe how low my energy dropped. I did have a stress test the day before we left, maybe that had something to do with it?

I hope you get to feeling better and your energy picks up.

Nmorgen,

Have you experienced episodes of low blood sugar? I wonder if the D-ribose made you feel badly because you are prone to hypoglycemia. I take less than the recommended dose 2.5gm in the morning and then at noon. I can not take the D-ribose before bed because it keeps me awake. For me, it has the similar effect of caffeine on how it makes me feel without the elevation in heart rate and blood pressure. The only POTS symptom is helps with is the fatigue, which is low on my list of issues to fix. I would be avoiding it like the plague if it made you feel horrible. It obviously did not agree with you.

You know I really don't know if I have experienced any hypoglycemia. When I looked at the symptoms they were pretty much the same as what I get with my POTs, so it could be possible. The adrenal support that I bought ingredients list is: adrenalinam, berberis vulgaris, argentum nitricum, natrum muriaticum, vanadium, oleum jecoris aselli and petrolium. It says to use for insect bites, allergies, inflammation, stress and exhaustion. I guess I really need to research each of the ingredients. I have to say that at this point I am almost terrified to take anything except for my regular vitamin.

I don't take a ginger supplement, but I do eat a lot of Thai food with tons of ginger. I crave it all of the time. Maybe it's the ginger, or it's just so darn good.

I got a chuckle out of this because I am a caffeine tolerated, alcohol crashes me, and better in cold POTSie. But, like you, I am a "better moving around" POTSie.

I am also starting to look more into herbal treatments, as well as Eastern medicine.

I have found a nutritional supplement for CFS called D-ribose surprisingly effective at boosting my energy levels. I find this odd because I do not have exercise intolerance, though I do have overall fatigue. I would not recommend to patients on diabetes treatment or hypoglycemic episodes, since it may lower glucose levels.

Thanks for the recommendations.

I aso tried the D-ribose and it made me feel horrible. At the same time I bought the Adrenal Support, but after the horrible experience with the D-ribose I was too afraid to try it. I'm gad it seems to be helping you. Did you happen to try the adrenal support? I found this stuff on a clinics website for CFS and fibromyalgia.

Wow! I am so grateful for this thread. I have been feeling horribly depressed today. I am glad that I am not alone. I thank God for this forum and everyone of you. What have I lost- my future. It makes me so sad. I'll have to write more when I'm in a better frame of mind and not sobbing.

Hi,

I get the body tremors as well. Sometimes they are only at night and sometimes they are there during the day. I also seem to have blurry vision with mine. I also get the nausea, though I usually never actually vomit. I have noticed no patterns for the tremors, but the nausea is always there when my heart races, bp shoots up and pulse pressure narrows. I also believe that I am having intestinal motility issues which has been causing major nausea. My GP put me on motilium and I haven't had any nausea since taking the medicine.

You can do a search for tremors, there was a post a month or so ago and everyone discussed what helped them with the tremors. I stretch and take calcium and magnesium(if my blood pressure isn't low). They all seem to help the tremors, but they don't really go away. I did take Norflex for a while and it completely got rid of my tremors while I was on it.

I hope you get some answers and start to feel better soon.

Hi Lieze

My Ablation was about 2 ? years ago now, and I would say within days after I was still feeling the same. I do get the butterfly feeling you talking about at times but its more when I get the extra beats. When im getting the high heart rates it just fills really fast some times it can beat really hard and I have trouble breathing. I have also noticed that at times and I don?t know if this has anything to do with it or if it?s a coincidence but I couth after also but not every time. In fact last night I woke up 3 times coughing really hard and was not able to get my breath at all?very scary..

My PVCs feel like that. Like my heart is beating really hard and the breath is being knocked out of my chest. I take a really deep breaths and cough to reset my heart rhythm. That usually helps mine.

I would ask for the actual test for the ttt. I know I have read on this forum that someone had one done and the dr told them they were negative for POTs, when in fact they did have POTs, the dr just didn't know what he was doing. I would also see if the dr will put you on a holter monitor to find out what was going on. Actually I would just find another dr altogether and get a 2nd opinion.

Okay, as far as losing things goes, I have become highly organized. I have a place for everything. I make it a ritual to put things I really need in there place. If I don't I would probably never find them. It seems I have hardly any short term memory. For example, when I come home my purse goes in a certain place, my keys and cell phone. I remind myself as soon as I walk in the door to put everything away before doing anything else. Usually I have been out grocery shopping and I remind myself after things have been put away to check and make sure I put my purse, keys and cell phone in their place. After that I completely forget about them until I have to go out again.

I take a note of things that are important and go over them in my head so that I wont forget. Carry a notebook or get one of the eraseable boards to write on. I do this so I don't have to tax my brain on things I need to know, but don't have enough memory to actually remember them.

I am hopeless with names. Today we went to a play date with a group of mothers who speak English. I knew one of them, but the others were completely new and as soon as they told me their names I forgot them. I have to repeat the names and really think about it to actually remember them. It's not an option when I am trying to hold a conversation b/c I can't do both at the same time, lol. I sometimes get horrible recall out of the blue. I was riding in the car with my husband and as I looked at him I couldn't remember his name. I was thinking oh my God, I can't remember my husbands name. It was a little scary and it took me several minutes for my brain to finally start working.

Sometimes it makes me sad b/c I am only 35 yr old. What is my life going to be like? Is this going to get worse? Will I need to be put in a home like an alzheimer patient? I had hopes of getting my Masters and actually trying to work. Now I am a little scared that I wont have any options. As you can tell I am a little depressed. This is not the way I want to live my life. Heaven forbid if anything happened with my marriage. I don't know what I would do. Would I even be able to work?

Hi,

I don't have the eye problem, except for seeing stars quite frequently. I do have the muscle tremors and I get the numb feet. I had a period last year when my toes and heel would turn completely white and numb. I think it was low blood volume. I try to drink a ton of water when my feet starting getting numb spots.

My memory has gotten terrible as well. It is a little scary for me too. I have a theory about it though. As I go from good to bad cycle and back I tend to forget how bad the bad times really are. The loopey memory is a blessing for that. I think maybe that's the point, that we actually forget our bad times. It's weird because according to my journal, 2 weeks ago I was pretty bad. I didn't even remember how bad it was until I read it, but I still can't really remember how bad I felt. So, though this "space cadet" stuff can be annoying and sometimes frustrating at least I wont remember tomorrow what I forgot today and if I'm feeling bad I wont remember that either,lol.

Actually I think she said her hr hit 198 after using a stationary bike for 1 min, not while she was sleeping. That being said, I also have hyper POTs and my hr and bp would soar in the middle of the night. Actually, I have terrible symptoms when I am lying down. It was one of the main reasons I didn't feel that I had POTs before I was diagnosed.

As far as the stationary bike, I had a stress test on Thurs using a stationary bike. When there was no resistence my heart rate increased normally, but as soon as the resistance was increased my heart rate shot up to 198 bpm. I agree with everyone else that you need to find a dr familiar with POTs to get a diagnosis. Even if you have had a ttt, get another one with someone who has experience. I wish you luck and hope you find some answers and feel better soon.

I feel like I am being electrocuted every day now. My brain feels hot then the electricity zaps to my muscles and they jump uncontrollably. With it comes a rush of "energy", yet I feel numb and week, but like my body wants to rush off. It isn't anxiety. It seems more to trigger when I go from sitting/standing to laying down. Laying down makes it worse,e specially when I am tired and want to sleep. My muscles physically jump. Family members touched them and said it feels like my body is trying to jump out of my skin. My head feels like someone is sitting on it when this happens. It usually happens out of the blue and tends to get worse if there is lightening/thunder/rain/damp weather OR excessive heat that day. And the weather has been horrible for the past two weeks here.

What is this?

Oh, and it also can feel like sometimes my skin is on fire from within. This actually leaves my skin dry and cracked and blistered! Something crazy is going on with me physically and I can't stand it. It makes me want to go jump a cliff sometimes! :\

Hi Kujiforo,

I have very similar symptoms. The muscle jumping I call spasms/tremors. Mine have a very high frequency(speed). They mostly occur in my legs and sometimes in the trunk of my body. I usually have them when I am laying down trying to fall asleep, or they will wake me up from sleep they get so bad. I always try to stretch before I go to sleep. You can also try calcium and magnesium(if you don't have low blood pressure problems). Here are links to previous discussions on tremors that might help you. http://dinet.ipbhost.com/index.php?showtopic=15607&hl= http://dinet.ipbhost.com/index.php?showtopic=15450&hl=

I get the occasional burning in my face and my toes. I was diagnosed with small fiber neuropathy and I think that the burning pain and the electrical pulses are both due to the neuropathy.

I hope your symptoms improve and you start feeling better.

Hi,

I mentioned about a month back that I found a cardiologist who wanted me to try exercising. About a week ago I did try muscle building exercises and for almost 3 days I was having horrible muscle cramps and felt like I could barely walk around. Today I was looking a norepinephrine side effects and one of them was acidosis from lactic acid. When you do the musce building exercises you increase your lactic acid levels. The only thing I found on the internet that is used to combat this is creatin and sodium carbonate. I was wondering if anyone else has tried a creatin supplement when exercising.

Also has anyone tried an alkaline diet and if you have what were you results?

I am so happy that everyone who has heard of or is taking the medication has responded to this post. I'm also really glad that it does seem to help everyone and hasn't caused any problems. I am taking 10 mg twice a day, and hoping that in another week I will be able to wean off it and use only when needed. We will see.

I looked up the diet for gastroparesis today. It's completely opposite of how I have been eating lately. I have been trying to eat tons of fiber hoping that the constipation would get better. Now I'm thinking that I probably just made the whole thing a lot worse. I'm looking at doing the liquid diet for 1 day and then going on to the stage 2 part of the diet. I'm hoping that the 1 day of liquid will be enough, b/c I don't know if I could do it for longer.

It makes me feel better that you both have actually heard of this medication and it is safe and it works. I really appreciate you responding and giving me peace of mind.

It's good to know that another POTs sufferer is taking this drug. I have to say I was a little leary when I read it had not been approved by the FDA. Of course I had already taken it by then. I'm thinking the agitation I felt last night might have just been anxiety at learning that it was an unapproved drug and I didn't know the interactions between it and clonidine. I know that I didn't feel bad after taking it like I do with so many other medicines.

I know it definitely helped with the nausea and this is the first good BM I've had in weeks. I've read that it is used for gastroparesis as well as nausea. After reading several posts on dinet about constipation and slow motility, I'm wondering if this might actually be my problem. Maybe the slow motility has been causing the nausea. I haven't had to take the motilium today as I haven't experienced any nausea. I am thinking about taking a pill when I start to notice severe constipation and nausea. Maybe my intestines just need a kick start.

Thanks eveyone.

I'm glad to know that I am not the only one struggling with this. I definitely going to try the computer chair. I have decided that I am going to continue the sweeping, but I am leaving the mopping to someone else. I am also going to try and train my 10 yr old boy to help me with things. I'm sure his future wife will appreciate that . I have lowered my standards and I guess everyone else in my family has too, b/c knowbody seems to complain about our mess. Maybe they just don't want to have to do it themselves, lol. My son does help me with the garbage, but we live in an apartment and the garbage is on the other side of the building and it's a pretty long walk. I am still trying to find a safe cleaner over here so that the kids can help me. I really do appreciate all of the advice.

Hi everyone,

About a week ago I asked if anyone else had nausea from drinking water. Well, sine then I haven't been drinking that much water b/c well I was just nauseated and the water was making it worse. Friday, I woke up in horrible pain and thought I might have a kidney infection. I went to my GP and she told me I had a little blood in my urine and I could possibly have a kidney stone. She gave me a prescription for motilium and told me to start drinking a lot more water. The motilium has helped with the nausea and the constipation I was experiencing, but I have had a little more tremelousness while sleeping. I tried to look up the interactions with the clonidine, but I realized that domperadone/motilium has never been approved by the FDA. It is a dopamine antagonist and I just wanted to get someones input on if they have ever taken anything similar and if it bothered your POTs. I don't want to take this and end up worse off. It has allowed me to start drinking more water which has helped my kidneys to feel better. I'm also wondering if the severe constipation I have been experiencing for the past month could be a gastro motility issue. I can definitely feel my intestines working since I started taking the motilium. It's just a little disconcerting to find that the FDA has never approved this drug. I know a lot of you know more about dopamine/epinephrine/norepinephrine and dysautonomia and how they affect it than I do and would just like some input on whether you think this would be okay to continue or use with caution. Thanks.

Hi,

I also suffer from this. I have to sleep at least 12 hours to function. Right now I am going through insomnia.