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My blood pressure has steadily trended down despite doing everything I can to bring it up. Every month or so, I go down another 10 points and don't go back up. The exercise tolerance, blacking out, wobbliness, nausea, etc. get worse corresponding to my pressure. Since Sunday I've been in the low 80s and I am only comfortable when I'm above 100 due to baseline hypertension. On Sunday I was 80/48 laying down and couldn't muster the strength to open my eyes all the way or talk very much. I think I've gotten used to it a little so I am functioning a little better with the same pressure. I did try holding some of my meds and had no effect other than worse symptoms that they would have treated.

 

At this blood pressure, I have so much nausea that I cannot eat and I have not been hungry since Sunday. I've already lost some weight as I usually eat often, and I adore food. I've tried tempting myself with all kinds of treats and nothing works. It's not the "I'm going to throw up" sort of GI nausea... hard to describe, but it's related to low blood pressure. I have forced myself to eat something every day, but I am weaker and feel worse afterwards.

 

I'm using metoprolol which helps with the tachycardia and pounding heart (it never really seemed to lower my pressure and I only take 25mg per day) a minimum of 4 liters of water and 4-8 grams of salt daily. I take a lot of supplements which may have helped a little... I wear compression sleeves (I do think they help somewhat), no longer take warm baths or even use a heating pad on high (same effect :( lowers my BP). It's not hot here and I am not outdoors much if it's above 65 or so. I used to exercise a ton and now half a mile of walking feels impossible. After I exercise my blood pressure goes down and stays there. I'm still pretty fit, though, and I keep trying.

 

I have no diagnosis relating to this yet other than idiopathic hypotension, exercise intolerance, tachycardia, and palpitations. I can't get in to see the new cardiologist who deals with dysautonomia, or the neurologist, until August. My current cardiologist has done all of the testing he could think of and has no more ideas. He wants me to see my primary, who would either tell me to see my cardiologist, or just spend the usual forty seconds with me and shake his head. Maybe he'd send me to the ER which I think is silly.. if my multiple doctors can't diagnose or treat me, how would a new one? This is a chronic problem and not an emergency anyway. I've seen an endocrinologist and ACTH stick with nothing showing up there either.

 

I am interested whether fluids would help but but I am sure I can't get them prescribed. I would love to see a new doctor soon but I have asked doctors to call to try and get me into sooner, been placed on cancellation lists, etc. to no avail. I'm getting a new primary, but he can't see me until September.

 

 

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So sorry you are having such a hard time.

IV fluids usually help me a lot--for at least 12 hrs or so.  However I am not prone to such low bp--my situation is somewhat different.  It seems it would be worth a try if a dr would agree to prescribe it.  Not that I am promoting this in anyway but I've heard of hydration centers with medical staff where people can get IV fluids -- to support them after athletic events or get through hangovers--with no prescription. 

Hope you can see a dr sooner than September!!

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Thanks. So even if I get IV fluids, I might not get a full day of relief. I need an appetite! I will think about whethe I can get anyone to write it. It's honestly feeling like none of my doctors care much about me... they never call back to check on me or anything. I think they are all giving up.  

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Have you tried chugging a "bolus" of 16 ounces of cold water?  It's evidence-based self acre for raising blood pressure.  I wonder if that would bring you up enough to be able to eat - and wonder if you'd be able to eat after chugging water.

Other forum members who feel worse after eating report tolerating very low fat diet.  Is that something you're willing to try?  Perhaps the foods you're tempting yourself with are too rich for your digestion?  (And some feel better with high fat / low volume diet, I'm in that group.)

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I have tried chugging. In fact I never get thirsty and don't like to drink, so I normally do chug down my water. 

 

I do eat low fat sometimes and it doesn't seem to matter what I eat-as long as it isn't all white flour/sugar, and isn't too much food. I love vegetables and I haven't been interested in eating those either. Normally, I feel better on more fat and fewer simple carbs. If I could get my pressure up, I'm sure I would want to eat again. I wish I knew why my pressure kept going down.... the idea of this trend is kind of scary. 

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Novel idea: trying chugging a sweet drink like Kool-Aid or Gatorade.  There's evidence coming out in the last year that the sugar industry did a massive cover-up after research showed sugar to increase risk of heart disease, and that set off the USA's past low-fat high-sugar diet.  Hey, everyone got high blood pressure, heart disease and obesity!  YAY! :sarcasm:

74 grams of fructose daily is associated with 30% increase of risk of blood pressure over 140/90 and 70% increase of risk of blood pressure over 160/100.

Perhaps added sugars with your water bolus can help you feel better?  If nothing else it gets some calories and energy into you right away.

Do you dare try caffeine to raise your blood pressure?

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I do use caffeine although I can't handle much before my heart rate gets too fast. I love one cup of strong french press in the morning. That's interesting about sugar... It makes me feel worse. I'll try adding a lot of sugary stuff to my high calorie shake. That's about the only way I can force lots of calories into me these days. Thanks for the ideas. 

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You may want to talk to your doctor's about your beta blockers ,they may lower blood pressure. Maybe a lower dose ,or you could ask about ivabradine which does not affect BP .

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A lot of doctors are hesitant to use ivabradine because it's so new and don't have experience with it. It was approved by the fda in May 2015. It took about six months of talking back and forth with my pots dr before he agreed to start me on it. I don't have any side effects from it which is awesome, but it does interact with a ton of meds. Since its just been approved here in the US there is very little research on it,and most is on heart failure bc the pots is off label. It's been a game changing med for me, I did find some research on pots and ivabradine, hopefully they'll put out more.

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On Saturday, May 06, 2017 at 7:52 AM, SarahA33 said:

A lot of doctors are hesitant to use ivabradine because it's so new and don't have experience with it. It was approved by the fda in May 2015. It took about six months of talking back and forth with my pots dr before he agreed to start me on it. I don't have any side effects from it which is awesome, but it does interact with a ton of meds. Since its just been approved here in the US there is very little research on it,and most is on heart failure bc the pots is off label. It's been a game changing med for me, I did find some research on pots and ivabradine, hopefully they'll put out more.

Do you have pots ? Does the ivabradine help with your standing heart rate ?

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It may be time to revisit what medications you are taking. You may need to add medication to increase your blood pressure and a motility drug/nausea drug for your nausea. Another alternative is to see another physician, who also specializes in what you have for a 2nd opinion. I would also suggest if you can tolerate power drinks and shakes/smoothies for calories as easier on your digestive system especially the high protein shakes. 

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So, this current cardio, did he put you on a tilt table? Did he check your standing norepinephrine levels? This would at least give some kind of diagnostic base to start with? It sounds like he won't even give you a POTS diagnosis. Did he explain why? Does he not feel qualified or does he not believe in it? It sounds like he is uncomfortable doing anything. I'm wondering what Florinef would do for you. You mentioned baseline hypertension but that your BP is dropping. Is hypertension gone or is it intermittent throughout the day? If hypertension is gone, I would think that opens you up to more options than oscillating back and forth. That back and forth thing is harder to treat, I think.

Hang in there. This next cardio may be the one. You have to kiss a lot of frogs before you find the right one. ?

Good luck.

Kim 

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The cardiologist didn't run a TTT. I had one (without cerebral Doppler) ordered as a prerequisite to seeing a neurologist who specializes in dysautonomia and it didn't show anything. From what I hear, the test was not done correctly, and I was super stressed about traffic, being on time,  and finding the place, which always improves my blood pressure. I'm not sure I have POTS but it's definitely something! I don't have huge increases in my rate but I get dim and hypotensive when getting up. Lately I can't see at all (just about completely black out) when I get off the couch to answer the phone, for instance. I'm very wobbly and fell over into a grocery display today. 

 

My geneticist (who can't test me for anything because I don't have a diagnosis. ???) believes this is dysautonomia . She set me up with another highly recommended cardiologist who can't see me until August (yes I am on cancellation lists and begged for earlier appointments telling them I was not doing well), and I will see a new neurologist who will actually talk to me, also in August (same deal). No one knows what to do to help me... I think my cardiologist mentioned POTS but that it's rare (ugh). Once I came back with the negative TTT,  that was it. I don't believe I have EDS as I'm not that flexible.

 

I've never had standing norepinephrine levels checked. I guess I haven't seen anyone knowledgeable (although I saw a good endocrinologist who found nothing except high renin... a byproduct of low blood pressure). I might be hyperadrenergic based on my terribly pounding heart and fast rate despite being fit.

 

I haven't found anyone who will prescribe me anything except for metoprolol for my tachycardia.  I'm grateful for that but I do think I might need more treatment!

 

I wish i could see more doctors but I can't get in to see anyone anytime soon! I have good recommendations for the ones I will see in August.

 

I haven't had a systolic blood pressure above 110 for quite some time. I've been off the anti hypertensives for about 6-8 years... as my pressure came down my primary at the time removed one, then the next. I guess it's good not to swing not back and forth, but I feel like the life is leaving me as my pressure gets lower and lower.

 

I make high calorie smoothies that I enjoy (peanut butter, protein powder, chocolate ice cream, banana, etc.), but I have been so nauseous I can't always get myself to drink them lately. 

 

Thanks for the help... keep it coming!

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Saline IVs help me when my BP starts to crash really low.  I think It's outrageous that your doctor won't prescribe them and feel they are a very SAFE and proven treatment for POTS.  Much safer than many medications that they hand out.  If you see a POTS specialist, they can make sure you get a prescription.  

If you live in a bigger city, you can look for a Hydration Clinic... we have several in my city. You don't have to have a prescription to go there and they will come to your house as well.

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I would love to try that. We don't have anything like a hydration clinic but I live a bit over an hour from Boston. I just don't have anyone willing to help me, really. It doesn't help that they don't know what I have.

The neurologist is an autonomic specialist, so hopefully he can help me... in 3.5 months :(

I realize that having blood pressures sometimes below eighty is dangerous in itself... 

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On ‎5‎/‎10‎/‎2017 at 0:50 PM, Bladerunner said:

Do you have pots ? Does the ivabradine help with your standing heart rate ?

Hi, yes I have POTS (hyperadrenergic) and IST (inappropriate sinus tachycardia). Ivabradine lowers both my resting heart rate (IST) and the upright tachycardia from the POTS.  My resting HR is about 70-100bpm now. Before starting this medication a 30 day holter monitor averaged my HR around 130-140bpm.

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