Gena

Okay, it's in the wee hours of the morning and I can't sleep. My heart is pounding in my chest - not terribly fast but just very forceful and this is really annoying. For the past 2 weeks I've been unable to get a good night sleep because my heart rate has been all over the place and I'm having so many arrythmias at night and lots of chest pain. I don't know whether the heart problems are causing my intense anxiety at night or if my anxiety is aggrevating the heart problems. Probably a little of both! I'm so mad at myself because I can't even manage to even use any of my guided meditation/relaxation techniques that normally work during the day. It's like the more I try to focus on relaxing the more tense I get! My whole circadian rhythm is really thrown off now, because I'm really tired during the day and become a live wire at night. I try to relax before bed and do all the standard rituals to wind down, but nothing helps. Tonight when I went to bed, my HR was at 45 and then every time I started to doze off I wake up with this fear that it's going to stop. Next, it went into an arrhythmia, then went crazy tachy on me and then came down to about 65 and beating very forcefully.AAAARgh! After 2 weeks of sliding down in the POTS hole, I start to wonder how in the world I can live every day like this and make it into old age?? I know my symptoms are nothing new and even mild compared to some who post here. I feel guilty for even complaining, but the heart thing just scares the crap out of me to be quite honest. I dread trying to go to sleep at night and can't get out of this pattern. I have an appt. with my general doc on Monday and am going to ask him for another holter monitor and a 24-hr BP monitor to see if they can determine what kind of arrhythmias are going on and if it's anything I need to be concerened about. No one wants to put me on beta blockers b/c my BP is chronically low.(Well I just took a half of Xanax, so maybe I'll be able to drift off to LaLa land soon? Thanks for letting me vent!

Emily, I found this pumpkin pie recipe online...It's gluten and dairy free. I've never tried this recipe, but it sounded good. ( i usually make a GF pumpkin filling, but I do use condensed milk, and I make GF pie crust using mix I buy at the health food store). However, if you try this recipe, let me know how it turns out. (By the way, regarding your post about always eating and not gaining weight...that's me too. I would love to be able to put on a few pounds, but I guess our bodies burn up the calories too fast! I do work out 3-4 times a week though. It helps to regulate my heart and just makes my body feel normal, but alas I digress...back to the recipe... HONEY PUMPKIN PIE No Added Fat, Sugar-Free, Wheat-Free, Milk-Free Utensils needed: One bowl, spoon, measuring cups, grinder for walnuts, 9 inch deep dish glass pie pan. Preheat Oven 400? F Pie Crust 1 cup Quaker quick oats (or generic) Note: For those with Celiac, You may omit the oats and use all nuts 1/8 teaspoon salt 1 cup finely chopped walnuts 1/3 cup honey 1/8 teaspoon cinnamon 1 tablespoon real maple syrup Directions: In a bowl, mix all ingredients well. Mixture will be sticky. Lightly spray a 9 inch or so, deep dish glass pie pan with Pam spray or a generic equivalent. Pour mixture into pie pan. Spray your fingers and press mixture roughly over bottom of pan. Re-spray fingers as needed. Have patience, this will take less than five minutes. Now spray top of mixture covering bottom of pan. Using fingers and firm pressure, pat down crust and you will find with practice, this will cause crust to spread evenly and push at least half way up the sides of the pan. The crust doesn't need to be perfect or to reach the top of the sides. Lightly spray crust and bake in oven at 400? for 5 minutes. Remove from oven and prepare filling. Leave oven at 400?. Pumpkin Filling 1 - 15 ounce can real pumpkin 3/4 teaspoon cinnamon or pumpkin pie spice 2 large eggs 1 teaspoon corn starch 3/4 cup honey (mix well with spoon) 1/8 teaspoon salt 1 cup rice milk (mix well) Directions: Follow recipe and mix when directed. Pour filling into pie crust. Bake at 400? for 10 minutes, reduce temperature to 350? for 30 minutes. Then increase temperature to 375? for 15 minutes. Turn oven off and leave in oven 10 minutes more or until inserted knife comes out clean. If your oven runs hot, watch the pie closely as the honey and maple syrup can burn easily. The crust can darken and still be fine. Cool pie 30 minutes before cutting. Note: Regular milk may be used in place of rice milk (a non-dairy creamer may also be substituted). You may also vary the amount of honey in the filling by one or two tablespoons, more or less, to suit your taste. You may also use your choice of spices.

Just wanted to add that Emily, you make me laugh too. Have you ever noticed that at the end of you emails you're always running off to get something to eat. I thought I was the only one who ate 24/7, but I think you take the cake on that! (no pun intended).

Amy and Mary, Thanks for your input. I will try a sample pack and see how it goes. When my POTs symptoms flare up I do have a lot more trouble with panic attacks (only at night though)...so maybe this will help me through that. If anyone's had a negative experience, I'd like to know that as well.

The reason I said I wasn't sure if it was helping or hurting was b/c I had 2.5 months with very mild symptoms and then the last two weeks I've had a lot of arrythmias and tachycardia. Yesterday was my first day of decent sleep and normal heart rate in 2 weeks. I had been taking CoQ10 during my 2 months of "mild symptoms", but then ran out for a short bit and recently started back on it. I dont' recall if I started back on it before I started crashing or just within the last week of my crash. Brain Fog. Anyway...Here's an excerpt of one of a trillion articles that I found when researching the internet on coQ10.... Coenzyme Q10 has also proven useful in the treatment of various cardiomyopathies (diseases of the heart muscle that reduces its pumping capacity). Studies have shown that supplementation with as little as 100 mg/day for 12 months results in better pumping capacity (increased ejection fraction), increased muscle strength and improved breathing. Several studies indicate that CoQ10 may be beneficial in the treatment of hypertension (high blood pressure). A study of 109 patients with long-standing, essential hypertension, who were on antihypertensive drugs, concluded that supplementation with an average of 225 mg/day of CoQ10 improved functional status, allowed about half the patients to discontinue most of their blood pressure medications and resulted in an average decrease of systolic blood pressure from 159 to 147 mm Hg and a diastolic pressure decrease from 94 to 85 mm Hg. Smaller, more recent Japanese studies have confirmed these findings. Studies at the University of Ancona in Italy have provided evidence that CoQ10 supplementation reduces blood levels of epinephrine (adrenalin) and other catecholamines; this is believed to be partly responsible for the drop in blood pressure and may also explain why CoQ10 is effective in reducing the incidence of certain types of arrhythmias. Boosts energy and brain power Coenzyme Q10 is a great boost to heart health, but it has many other beneficial effects. Strenuous physical exercise reduces blood levels of CoQ10 and supplementation with 60 mg/day has been found to improve athletic performance. Administration of CoQ10 alone or in combination with vitamin B6 (pyridoxine) boosts the immune system and may be useful in the treatment of AIDS and other infectious diseases. An adequate level of CoQ10 in the body is essential to proper muscle functioning and several studies have indeed shown that supplementation with 100-150 mg/day of CoQ10 markedly improves the condition of people suffering from muscular dystrophy.

I've read a few posts in the past where people have said that this helps them to relax. My doctor gave me some samples of the low dose klonopin wafers that melt in your mouth. She said if I start to have tachycardia or feel a panic attack coming on that this med could calm me down. I have not tried it yet. (since we are all so hesitant to try new things...such a sensitive bunch we are! ) My question is this...What does it do to your body and mind...how does it make you feel and how long does it last? Does it make you feel weird or spaced out...or just calm and relaxed. (what I read briefly on another site, said this med is primarily an anti-seizure medicine.) The doc said I could take the Klonopin wafers on an as needed basis..is this true, or is this a med that must be taken regularly? Currently I'm not taking any meds, except for 1/2 tab of .25 mg xanax to help me sleep if my heart is feeling funky or if I'm feeling anxious. Wasn't sure if the Klonopin could be taken instead of xanax or in addition to?? Thanks!

Great question...I've been wondering the same thing myself. I presently take 100 mg once or twice a day. I was wondering if it's good or bad for POTs symptoms. It works on the mitochondria of the cell to increase cellular energy and is supposed to be especially helpful for people with heart disease or other arrythmias. I have a book called The Doctor's Complete Guide to Vitamins and Minerals, and it says that CoQ10 "may help reduce the frequency of PVCs-- the early beats, extra beats or skipping of beats of the heart's ventricles." It says that if it's going to help, you should see improvement with fewer PVCs in 1-2 weeks of taking 50 - 100mg per day. HMMMMM, I just haven't figured out if it's helping me or making things worse. Two other items of interest that the book lists under the subject of arrythmias... it says that a high saturated fat intake (above 10% of total caloric intake) can make your heart's electrical system more susceptible to the production of short-circuited signals. It also says food allergies and sensitivies may cause fluttering or skipping sensitivities in the heart.

Ahaaa! Thanks Katherine for that insight. I was thinking that it was only found in rocket fuel, so I was perplexed for a moment. Like everything else on this planet, it's a toxin that usually winds up in our food chain....We can't run and hide from everything, but it's good to be well informed. Well, I'm off to have a bowl of my organic cereal with some oranic milk. Cheers!

Yes, celiac can show up suddenly. I wasn't dx'd with it until I was 32. I never had any noticeable symptoms except for the last 6 mos before I was dx'd (which got really bad in a very short amount of time). However I had subclinical signs, iron anemia, for many years prior, which is often a good indicator of celiac or GI problem like Chron's if other causes for the anemia are ruled out. My father has celiac too. He was not dx'd until he was in his late thirties. Symptoms can present themselves when your child or later in your adult life. It's something worth checking into anyway.

Ling, I've had period problems all of my life. I also had mild endometriosis and fibroids. Whenever I've gotten to a point where the bleeding is too prolonged, heavy or just unbearable, my gyno has performed a D&C. I've had this twice, and basically it cleans out the inside of your uterus. Afterward, my body bounced back to a somewhat regular cycle for at least a few years and I would have much less bleeding during my periods. It was like starting fresh. You may also want to avoid meats and dairy that have hormones in them. They are believed to contribute to endometriosis. I only eat organic...(but apparently that has rocket fuel in it now, so who knows what to eat! ) And with that much blood loss, get your gyno to check your iron levels. You may need a supplement while you're bleeding. I hope you find answers soon.

Amy, I am not sure if you've ever been tested for celiac, but a lot of what you're describing is common symptoms for celiac. Untreated celiac can lead to weight loss, malnutrition, hair loss etc. AND it can cause the GI and gall bladder problems as well. In addition to an ultrasound, x-ray and liver enzyme testing, I would ask for the gliadin antibodies test (it's a simple blood test for celiac). Hope you find answers soon. Keep us posted!

Okay, maybe I'm missing something, but can someone please explain how perchlorate (the substance in rocket fuel) got into the ground and our milk in the first place??? It's not like we're launching rockets every day at these places, so what is the source?

Hi, just wanted to say I agree with Nina's take on the nose bleeds, because my mom has stomach problems and whenever she vomits she gets ruptured blood vessels in her face and eyes like Nina. She feels like all the blood has rushed to her head. It's called pitechia (although I don't think I spelled it right). It sounds like the same pressure might be causing your nose bleeds, but I would definitely mention it to your doctor.

Hi Merill, wow that is soooo scarey. I don't know how you managed to fall back asleep. If I wake up in the night with an episode it's almost impossible for me to calm back down until the sun is up. I agree with the other posts as far as reasons for the cramping. I've never had the cramping part happen before (but i've had everything else you mentioned...and it *****!) I am curious to know why the nurse thought it was a heart attack? And what did your cardio say to allay those fears? Please do keep us posted.

I'm not familiar with the mercury challenge your speaking of, but I agree with the other post regarding simple ways to test either via hair or blood. I believe you said you already know she's tested high for mercury levels, so is this challenge something that will help her cleanse it out? There are many heavy metal detox products on the market. Renew Life makes a good one. However, as with any type of detox process, sometimes a person experiences an initial period of feeling "yucky" during the cleansing process. However, this isn't always the case. If mercury is definitely at high levels, at some point, either now or when Nicole is feeling up to it, I would definitely consider a cleansing process. Apple pectin, glutathione and selenium are very effective and they are ingredients that you often find in heavy metal cleansing products at a health food store. Mercury can bind to immune cells and interfere with normal immune responses. It can be a factor in autoimmune disorders, kidney, cardiac and respiratory problems. I did not review the link to quackwatch that was posted, however, I have gone to their site before and they've completely mis-stated facts and debunked holistic tests and natural methods that are actually valid and scientific. Granted there's a lot of hocus pocus products and wacko naturopaths (and MDs) out there, but mercury testing and cleansing are valid if done correctly. I am glad to hear Nicole is feeling slightly better. Keep us posted.

JLB, I can sympathize with you. I've had a few months of feeling better and now I'm in a rough patch too. It really ***** to go downhill again, but I'm determined not to slide all the way to the bottom of the pit! I hope you can keep your chin up too. I agree with Merrill's recommendations and everyone elses' too. Do whatever it takes to prevent things from getting worse. You said there's a lot of stress in your life right now and you don't want to be a burden to your children. I'm not sure what your relationship is with them, but sometimes it's good to share your stresses with someone you love. Just talking about them to someone you feel comfortable with can sometimes lighten the load and put things in perspective. They may also have some solutions you haven't thought of. I do understand though about not wanting to burden your family. I often just tell my mother that I'm feeling "fine" when I'm really not. I am grateful for this forum. Electronic hugs are definitely helpful! I'm sending one your way.

Wow Emily, I'm impressed. That's a wonderful accomplishment. I'm glad you were able to do this. You should definitely feel proud of yourself. I hope and pray that your post crash recovery goes quickly and that your up to more outings in the future.

Hang in there Nina. I hope you feel better soon. What can they do to correct herniated disks besides surgery?

You may also want to double check if you've changed laundry detergents, soaps or lotions lately. Also, wheat and dairy allergies are known to cause rashes. Some people with celiac develop a dermatitis type rash with little itchy tiny blister like bumps. I really hope Nicole gets over it soon. Benadryl will certainly help ease the symptoms. I'll certainly keep her in my prayers!

I'm not sure what's considered normal when you're lying on your side, however, I do know that the cardiologists often check BP on each side of a patient to make sure there's no big differences. I'm not sure what kind of problem the difference would indicate though. I can no longer lay on my left side for very long since having POTS. If I fall asleep that way, I usually wake up with tachycardia. The best position for me is on my back. I have never taken pressure readings while I'm on my side though. Interesting question...maybe someone here will have more insight than I do!

I used to worry about the same thing when I first started having POTs symptoms over the summer - my BP would get extremely low. When my BP is too low at night, my body responds with tachycardia that wakes me up. Even if I so much as roll over in the middle of the night, I get tachycardia if my blood pressure has dropped really low. And then if I try to sit up or go to the bathroom I get really dizzy and feel like I'm going to pass out. The tachycardia sends my BP back into the normal range, so I guess that's how my body handles it. It is scary to think about, but our bodies somehow try to compensate. I'm not really sure what the scientific/medical answer to your question is, but that's just how my body responds.

If I'm going through a bad spell of POTS symptoms then I always have to leave the shower curtain open a little for cool air and keep the water temperature down lower than normal. However, when my symptoms are only mild, I can tolerate showers just fine. I do know that other people with autoimmune conditions like MS or lupus also often have trouble with heat and humidity in general and hot showers. I'm not sure if it has anything to do with pooling or not.

Hi Timbo, I was always 110/70 or 100/65. Since having POTS symptoms, my BP during the day hovers in the 90s/50s, unless I'm exercising or feeling tachy, which raises it back up, but only briefly (I never get above 120/80 even with tachycardia). At my worst, my BP gets low eighties over forties. Since having POTs, I can't seem to get it back up to my usual normal range though, no matter what.

Katherine, yes I am wondering if it's adrenaline release that's causing the tachy or like Rita mentioned in her last post maybe it's IST in addition to the POTS? It's so hard to tell what symptoms to investigate further, like IST or arrythmias or whether to chalk them up as "POTs". Technically speaking I think, that although many of us are dx'd with POTS, we all have symptoms that do no fall within the exact definition of POTS -- which is having tachycardia upon standing, with or without BP changes. I think quite often our symptoms fall more under the general term of dyautonomia....but that doesn't provide any answers either.! All of my autonomic tests at Mayo came back normal, so I am clueless as to what is the actual cause. All I know is, when I have a flare-up, my symptoms are prominent in the middle of the night. I will try to get a 24-hr BP monitor and hopefully that will shed some light. Would appreciate any addtional insight from others. Thanks everyone!

Rita, In regards to your statement above....I didn't know a 24 hr BP monitor existed. I thought you could basically only get those readings if you did a sleep study. No one has ever mentioned it to me. The cardiologist wasn't even aware of it, b/c I asked him how I would go about monitoring my BP 24 hours and he said a sleep study. Can I only get the device through Mayo, or do you think I could get locally through a doctor? I think it would definitely help me get some answers. During the day, the only problems I usually have are if I eat a large meal (which I really try not to) and when I'm exercising, I just have to hold back and not go all out. Sometimes I also have problems breathing during the day, i.e., my breath is not on autopilot like it should be...I have to conciously think about breathing in and out, it doesn't come naturally. These problems are minor to me. It's the really bad tachy and occasional arrythmias at night time that are really the hardest to deal with. Thanks for the suggestion!!