Ashelton80

Thanks for the replies. I have been taking my bp on a regular basis for about 6 months. I have never seen it much over 110/70 unless I am having anxiety or adrenaline surges and then it can go through the roof! I will say it seems to have leveled off a bit, but still running a little high for me. Not totally a bad thing since I am always so low. The other thing now I have noticed is horrible nausea, but I called my pharmacist and she said it does not cause this. It's probably just POTS and not the med. If it's not one thing it's another. I have only been on it for 3 days so going to give it more time. It is definitely lowering my heartrates, but I still feel like crap most of the time even with the lowered hr. Trying to be patient. Ashley

I think it just depends on what form of dysautonomia you have. From the webinar with the dr from johns Hopkins the other day it seems people with pots tend to have higher norepinephrine levels and people with nmh have higher epinephrine. Hence the difference in symptoms. I personally have Pots and am very hyperadrenergic. Meaning I just feel like I always have too much adrenaline. Even before diagnoses this is how I would describe it Tony husband. Either I have too much or am very sensitive to what I have. I have been this way for as long as I can remember. Anything that could possibly increase norepinephrine such as adderral, decongestant,sari snri,even supplements were BAD news for me and made my Pots symptoms much worse. So, I guess it would depend on your symptoms and diagnosis. I would say if u don't get that wired feeling then I would start out with the tiniest dose possible. You can always go up. I just started a beta blocker yesterday and the dr prescribed 20 mg 3 times a day and I took 10 this morning and 5 this afternoon. At this point I'm handling it fine. So I guess you know your body and figure out whether u think the way the drug works will benefit u. Otherwise u just have to try and see. I know how scary it can be! Good luck!

Hi all, well I started Propranolol today at a 5mg dose. Now, I know that doesn't sound like much, but I only weigh 115 lbs and am VERY sensitive to medication. I have noticed so far that my heartrate is definitely lower since earlier. Quite a bit lower which is great! The only concern at this point is that I also took my bp out of curiosity and it was a not normal for me. My normal bp runs 110/70 or a little lower. When I took it while standing my heart rate was good in the 70's, but my bp was 146/90. I know this is still a normal reading, but it is not normal for me! I thought beta blockers lowered bp? So since my heart is lower does the body compensate by just raising bp? Is is just too early to tell? I really want this med to help me! Just a little confused......

Hi I don't have a ton to add, but I have had the major weight loss as well. I'm 5'8'' and my normal weight is around 125 lbs. I have always been fairly thin, but when I first started showing POTS symptoms one of the first things that happened was major unintentional weight loss. At my sickest I was down to 102 lbs. I looked HORRIBLE! Dr's. were even questioning if I was anorexic because of course they couldn't find anything in my bloodwork that showed them anything was wrong. I may be wrong, but I feel like this comes from the excess norepinephrine and just feeling so wound up all the time. I have the feelings of chest pains, can't breath, shaky basically feels like I'm going to just lose my mind! My mom also has these. I have been very hesitant to take medication for POTS, but it has come to a point where I just can't put my body through this anymore. I will say the times that my body has calmed down and I didn't feel so on edge all the time, I gained 14 lbs back and now weigh 116!! I would love to gain another 10, but it's a start. It took me almost a year to gain it back though. So have you tried a beta blocker or a benzo? My mom takes both of these and is able to live a fairly normal life. I have been resistant, but am starting the beta blocker today and only take the benzo's when absolutely necessary. The one thing I have learned is that my POTS symptoms get much worse if I just try and ride the episodes out with out treating them. Also, maybe check your diet and see if something you are eating is aggravating it. I know blood sugar plays a big role in the episodes I have. I was trying all the high calorie junk stuff to try and gain weight and it wasn't until I removed all of that and got my blood sugar leveled back out that I actually started to gain and my POTS symptoms improved. Just another thing to look at. Hope you get some answers soon and know that you are not alone. Ashley

Thank you so much for taking the time to come back and say you were doing better!! I wish more people would do this! Being new to the diagnosis it is very depressing to come on and feel like no one is ever getting better. You gave people HOPE by doing this!! Or at least you did me!

Last night my husband grilled steaks. My stomach was completely empty and the steak was the only thing that I had eaten. About 30-45 minutes later I had a horrible headace that lasted almost 4 hours! The only thing different is that my husband had marinated the steaks in Dale's seasoning that contains MSG. It didn't really seem to effect my heart rate or bp or any other POTS stuff, but oh my word my head felt like it was going to explode. Does anyone else have problems with this and MSG?

Sara, First of all welcome! Congratulations on your improvement. It must be such relief to be able to use the word "living" again! Your post was really an encouragement to me. I love to hear when people are getting some relief from this condition. Hoping to find the right combination of things for me very soon. As far as another pregnancy I don't have a lot to add other than I can very much relate to wanting another child, but having concerns. Not giving into fear and having your dreams come true versus being realistic about the situation. I was diagnosed with POTS this past May, but I have had this for well over 8 years very mildly. It was after weaning my first child from breastfeeding did I start to notice the first symptoms of POTS. Less than three months after weaning my first I found myself pregnant with my second. I was very thin, frail and knew intuitively that I was not strong enough physically for a second pregnancy. I began having problems right away at 9 weeks and ended up losing the pregnancy at 23 weeks gestation. This is when my very mild symptoms slowly turned into full blown POTS. I like you was told it was depression from all I had gone through. I knew better! Do I think I lost the pregnancy due to POTS...absolutely NOT. My body was in a weakened state and wasn't being helped by POTS, but here is the reason I say that. I know for a fact I had POTS during my first pregnancy and it was a breeze. Most people were envious of my pregnancy. It was just the fact that I was strong and my POTS symptoms was bascially very very mild at the time. I don't tell you this to scare you because my point is I think we all know instinctively sometimes what our bodies are capable of handling. I would say if you feel strong and healthy and it is your dream to have another child then go for it! You know what you are dealing with now, so you are already leaps and bounds ahead of where you were last time! I often look back and think if I had of know what to do to help myself earlier on I wouldn't have gotten so sick to begin with. Delay in diagnoses just continued to make me sicker. Obviously this is just my very uneducated opinion. I honestly just hope one day I will be in your position where I can actually consider another child. I have even had my heart opened up to adoption through all of this. Who know maybe I will adopt and have another! Good luck to you and please keep up posted! Ashley

Hi Chrissy, Absolutely relate to being overstimulated 100%! Bright lights, noises, crowds etc. I tried to go to a concert last October and lasted about 10 minutes. It can even happen when my best friend comes over with her two children and my 3 year old are running around the house. My mother says she can tell exactly when I start "fading" and says that my eyes start to glaze over. Not sure what the physiology is behind it other than it's neurological and our nervous systems are how we adapt to pretty much everything. I used to be a very social person, so this aspect of the condition has been extremely hard. Ashley

I have POTS and I actually thought for the two days I tried Zoloft my doctor was trying to kill me. It was that horrible! It intensified my symptoms 10 fold. Just be very careful and start out with a very tiny dose if you decide to try.

I have definitely thought about taking a 5mg dose of the propranolol just to see what happens. Hopefully with that small of a dose if I did have a bad reaction it wouldn't be to disastrous. Yes, I agree that I feel like I am VERY hyperadrenergic. Those were my first symptoms really. The shaky, tremor, adrenaline, etc. I thought for a long time I was just having panic attacks, but I always felt they were coming from a physiological place and not a psychosomatic place. So hyper pots isn't supposed to have low blood volume? I definitely notice a difference when I chug water and salt. Like a huge difference! Actually looking back when I ended up in the ER they gave me fluids and an ACTH stim test. I felt sooo much better afterwards and could not figure out which one made me feel better, but I'm sure now that is was the fluids. I would almost love to find someone to do IV fluids on me a couple times a week, especially when I get this bad. I wonder if anyone does that? Thanks for your response Ashley

Hey Lina, yes the doctor who diagnosed me at Vanderbilt is still my dr. I wouldn't say she is great, but I guess she is ok. I tried the Florinef and immediately noticed sweaty palms and when I tried to lay down to sleep my muscles would spasm and twitch. I then tossed and turned all night long. I have seen where the Florinef can activate the sympathetic's a little so I guess that's where the beta blocker's come in and try to help calm some of that down. It just seems too overwhelming to treat this with meds. I'm just not sure it's possible to balance the nervous system that way. So, I tend to do nothing and things usually improve on their own until I slack off because I feel better and have a crash like I am right now. How would you say you are feeling on your meds? Have they given you relief or do you feel as if you are constantly having to change things around? Oh and I do have a script of xanax from my primary care dr. that I will use if I really need them. They do help when I start this panicky stuff at night. It's funny that my body will calm down and I won't need them for months and months. Thanks so much for your replies! Ashley

Thanks for the suggestions! I did chug a bottle of water and a gatarade and seem to be feeling a tad better. I just felt like I couldn't even lift my head off of my pillow. I also haven't slept much in the past week so I know that is playing a huge role as well. It just all seems to be a vicious cycle. At times I am VERY hyperadrenergic. Actually that seems to be how this all very slowly progressed towards full blown POTS. I definitely think I have low blood volume problems, but I feel as if either too much norepinephrine or a super sensitivity to what I have that really landed me here. Does that make sense? My mom has had all of these similar symptoms and problems except her's was more ariathymia with a little bit of a fast pulse versus tachycardia. She lost tons of weight, panic attacks, etc. Her cardiologist put her on a beta blocker to block the effects of her out of control sympathetic nervous system and thing improved quite a bit for her after that. This is the only reason I feel like maybe it's worth a shot with the beta blocker's as I do feel like some of this seems genetic from her. To answer your question my pulse still rises when my bp seems to be dropping a bit. When I had my testing done at Vanderbilt my pulse was running 150 at 10 minutes and my bp stayed pretty stable or a little high for me and the pulse pressure would narrow.

Last week after too much traveling and an intense accupressure massage I am experiencing a pretty severe "crash". At first my sympathetic's were going nuts with huge adrenaline surges which would send my heart rate through the roof and my bp up to 140/110 with sweating, tremors, etc. Basically a huge panic attack for a few nights in a row. Now, I feel like a wet dish rag weak, limp, shaky, etc. I have also noticed that my bp is now dropping even upon sitting up. I will be around 117/75 and I will sit up and take and it will be 100/75. Just the systolic seems to be dropping. I am so upset and devastated since this comes after a long period of being somewhat stable. What do I do?? I am not on any medication but have a prescription for Propranolol waiting on me at Walgreens. I am so confused as to what to do to help myself at this point. I am now scared to take the beta blocker since my bp seems to be dropping. Has anyone experienced this or have any suggestions? Please help!

The only time I could tolerate the tablets are when I ate a really heavy meal like a cheeseburger. Otherwise, I would be really nauseous for about 45 minutes after and would never want to touch what I had just eaten prior ever again. I ended up stopping the tablets and just trying to get the salt in my diet, I drink 2 can's of Campbell's soup a day and add sea salt to that. I strain the noodles and chicken out and just drink the broth. We get funny looks from the ladies at Kroger. That gives me about 3 grams. I also eat a lot of other soup and try to salt my eggs, veggies, etc from other meals. I figure at the end of the day I've eaten around 5 grams of salt during the day. Surely that is enough. Good luck!

Food definitely plays a big role in how well I feel and how much brain fog I have. The main things I stay away from are sugar, wheat and dairy. No processed foods like chips, crackers and try to eat mainly lean meats, veggies and fruits. Occasionally I'll have some brown rice or quinoa, but it has to be later on in the day and not early. It has pretty much eliminated the hypoglycemia that I used to experience! Good luck to you!

I have always been told to use ice when the muscle and nerve pain is severely acute. It's only when it calms down a bit that moist heat is ok.

hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-things-that-helped-me-with-pots-recovery I don't know if any of you have seen this article written by a gal with POTS including a Q and A at the end with her and a couple of people. I found this to be very encouraging! I know I love to hear when people are beating this horrible condition. I hope this gives you some encouragement today as it did me! Hopefully the link will work. I'm not very good at this kind of thing.

Hey guys, so the first time I ever noticed my POTS symptoms was about 8 years ago when I was a senior in college. The only thing I can think of that changed at that time was I smoked cigarettes all through the first 3 years (BAD I know), but tried to quit my senior year. It seems soon after or while I was trying to quit is when I noticed the anxiety, pounding heart, etc. They were very mild compared to now, but after seeing a couple of posts on here about people chewing nicotine gum it has me thinking. So what is it about nicotine that might make my POTS better? Should I try the gum? Also, I am seeing a pattern start to form with the severity of my symptoms. It seems as long as I leave myself alone meaning not trying any new drugs, supplements, herbs, etc. My body seems to regulate itself a bit. For example, I had an acupressure massage on Wednesday and could hardly stand up on Thursday (yesterday). I was VERY weak, tachy, etc. Then last night I had a major anxiety attack or "surge" as I like to call them. I am so upset since less than two weeks ago I was up and atem everyday and running a few errands and now I'm back in bed trying to recover from this setback. Should I just quit trying and leave my body alone? Thanks for your input, Ashley

I am just curious since it seems so strange to me, but I will wake up not feeling well with heart rates in the upper 90's walking around and hitting 116 climbing stairs. This obviously makes me feel very shaky, out of breath,etc. By the evening though I am walking around in the high 70's low 80's and sometimes won't even go above 100 walking up a flight of stairs. Anyone else do this or know any theories as to why?

Have you seeked the help of a chiropractor? If not, I would really encourage you to do so.

Sarah, I don't have a lot to add either since I am newly diagnosed. I just wanted you to know that I can relate to how you feel. I think it's the hardest part about having POTS is that no one can seem to answer the many questions we have. The only thing I do know is back in February I was where you are now. Only getting up hunchback lol or crawling to use the restroom and shower (sitting down). I am now able to fix my own breakfast, get my 3 yr old dressed and drive for a few quick errands that don't require me to stand. Hopefully that gives you some encouragement! And yes about the senses! I couldn't stand bright lights or sound and my husband had to stop wearing cologne because I felt like it was choking me it was so strong. All that is better now that I have improved. As far as the meds, I am interested to hear what other more seasoned potsies say about this. I have been prescribed Florinef by my dr at Vanderbilt, but have been gun shy about taking it. All I have really done is salt and fluids, juiced veggies everyday and tried to eliminate breads and sugars from my diet. This has been helpful, but it's obviously not enough being that I am still very limited in what I can do. Look forward to hearing what others have to say. Blessings, Ashley

First of all Congratulation! I can totally relate to the mixed emotions. I am new here and this is actually my first post. I too felt really great during and after my first pregnancy until I weaned her at around 8 months. Do you know why? Is it the shift in hormones that throws everything off? Or the shift in blood volume from pregnancy? I really can't figure out what happened. I hope to be able to have more as well. Don't want fear to get in the way of desires of my heart. Blessings to you during this time!!