At My Wits End!!

[McBlonde]

I am so confused. Just as I think I have something figured out, the symptoms change for no apparent reason. I just don't understand.

I have had low BP all of my life. The 1st time I fainted, I was 3 years old. I fainted twice that year. 80/60 was normal for me. Through the years, I fainted off and on. If I "stood up too fast" I would almost black out. I've had orthostatic hypotension as long as I can remember. Still, I lived a pretty normal life. Fainting (as it turns out) was actually better than this life.

In 2003, when I got really sick with severe fatigue, I saw an endocrinologist & he did a test where he had me lie down for 15 minutes and then stand for 15 minutes. I remember that after I few minutes of standing, I felt so sick. At the time, I had no idea I had any problem with standing. He tested my aldosterone & renin lying and standing. When standing, my aldosterone & renin were both low instead of one going up when the other goes down. Also, when standing, my heart rate when very high and my bp bottomed out...... THAT was my pattern.

Last week, after all these years, for no apparent reason, I wake up with a bad headache and check my BP and it's 140/90 with a HR of 116... This afternoon it's 145/92 with a HR of 74 all while resting. If I get up, I have a 30 point drop in BP before it spikes back up. It makes my head hurt on the left side so bad.

How is this even possible? How can I change from being a person who always had low BP to this? I feel beside myself with frustration because I don't understand and am not sure what to do. I do have a prescription for Clonidine which I haven't gotten filled yet (because, silly me! I thought my BP was too low to take Clonidine)

I thought with POTS, your BP was not affected, yet mine now seems out of control!? Any thoughts?

Thanks for any input.

[issie]

With the renal issues - you know my renin and aldosterone are too low too. I wonder if it has anything to do with kidney function. Issues with that can also cause high bp's. I have the higher bp's also. Do you know what your catecholamine levels are? Do you have high NE? The clonidine - helped to regulate me and stop the drastic swings. I'm not on it right this minute - I got to where it was making me very lethargic - but, for awhile it was a great help. I will keep it in reserve - if I start having those drastic swings again - cause it did help.

Let us know if you figure it out - cause others (like me) might benefit from it. I know, it's no fun having things this way - this has been what I've been dealing with for years. The terrible surges are almost unbearable. I started having really bad edema too - the clonidine - did seem to make the edema a little worse - but, wasn't the cause of it.

Issie

[McBlonde]

Issie!! That reminds me! (See, my thoughts are fragmented and I just don't think clearly) Yes, my NE was 700 resting and higher standing....can't remember the exact number this second. An the edema you mentioned!! Here I am on a mission trying to get my BP up to 110 systollically ... so drinking 8 bottles of G2 a day with the V8 + salt. with the compression pants...... When I took my sock off yesterday on my right leg, there was a deep indention where the top of the sock was and it was BLUE. It took 24 hours to "spring" back out. I can still see the mark though.

But what changes a personally suddenly from a low BP all the time to high BP? That's not POTS, right?

[issie]

It could be all the salt. It may be that simple. You could have really gotten yourself hydrated.

It's hard to say. I wish I knew all the answers - might win a medal or something. Ha!Ha! With the high NE levels you are by most docs considered HyperPOTS. The clonidine helped the wild surges - that's for sure. Just made me really tired. Have you changed anything else - besides lots of hydration and salt?

Issie

[McBlonde]

No... I haven't changed anything.... I've been doing that regime of G2, V8, H20 & compression pants since. February.

Two days ago, after I couldn't get my BP down, I switched to just water and stopped the Florinef, but none of that lowered my BP. I've been afraid the clonidine would make me feel fatigued and that incredibly awful depression like the Bystolic did

[issie]

Oh, thought maybe the extra G2's was something newly added . . . so, now not sure.

Compression on my legs makes my bp go higher. I can wear an abdominal binder and not leg compression and that helps with the naseau and dizziness.

The clonidine "might" cause issues with depression. Bysotlic was way worse on the tiredness and depression scale for me though. Clonidine is a sympathetic depressor and potentially could cause depression.

Maybe, give a call in to your doc and get some blood work done. Make sure all your levels are okay. They did recently find out that I've got diastolic dysfunction and that can cause edema. I also have some liver problems and those can cause edema too. Then I had a couple of positive markers on autoantibodies and they are checking that out further. There are all kinds of things that can cause edema. I'm just trying to figure it out myself.

Issie

[NMPotsie]

My understanding is that in my case the dysautonomia is causing baroreflex issues similar to baroreflex failure (but not constant; kind of on and off). So in my case, yeah, the POTS causes both high and low bp because the regulator isn't working correctly or is getting bad signals. Here is a link to br failure: https://rarediseases...ore/baroreflex/

This was happening with my POTS well before I started salt-loading, though the salt helps maintain a higher bp on average so that I don't get rebound hypertension. Oddly, if I eat less salt my bp spikes much more often and much more severely. My body is trying to compensate for the low blood pressure, but because the mechanism that controls that is out of whack, I end up on the other end of the spectrum, at hypertension. Clonidine specifically caused this reaction, and my doctor quickly had me stop it.

It's not the same for everyone, but in my case at least POTS definitely impacts my bp, and it happens very suddenly and very noticeably. When I get a spike, I have the same painful left-side headache. Dr. Goodman did an MRI but it was clean, so he just attributed it to the POTS and high bp. I call them high blood pressure headaches, and they are monsters. I'm so sorry you're having them.

[McBlonde]

Wow, NMPotsie! I've had these left sided headaches for 2 years now! Did Dr. Goodman try to give you anything that would stabilize your BP?

[NMPotsie]

I ended up on propranolol 10 mg TID and that has worked pretty well for me. My bp is still all over the map (I had to buy a machine that takes 3 consecutive readings 2 minutes apart to get an average and I report that as my bp) but it is in a much more narrow range than it was before I started it. But, and Dr. Goodman was adamant about this, it only works as long as I maintain the 10g of salt and 3L of fluid he put me on. I also have to avoid drinking too much plain water or it flushes out the sodium and my bp goes nuts. I don't think I actually get 10g most days, but I sure salt the heck out of everything and drink several cups of chicken broth a day. If my salt gets low, the propranolol will lower my bp too much and I will have a spike. My spikes are ridiculous, and lay me out for days, so I make sure and get max salt as much as possible. When I do have a spike now it is much less severe and doesn't wipe me out for days.

In the case of a spike, I take an extra half dose of propranolol, wait a few minutes, and if that doesn't take care of it I chew up a .5 mg xanax or two. That usually works somewhat. Again, I'm just moderating them, not stopping them altogether.

I still get left side headaches when my bp is even a little high, but they are liveable. I take Tylenol, which helps now but would not have put a dent in them before.

[NMPotsie]

Just FYI,,he based his recommendation primarily on my urinary sodium, which was in the 30s I think and should be over 100. I recently had it rechecked on the salt and it was 110, which is right where it should be.

[issie]

NM, what do you consider a higher bp? Mine can be so high that it is considered go to the ER - cause it's dangerous high. I was told not to salt load - that's where one of the differences is for me - I always show high sodium levels - even without salt loading. I don't want that high to stay there. It can cause other issues. Just goes to show how different we all are.

I have the headaches too with the wild swings.

I wish there was a "check this box" form and we could check all that applies and then go to "if, you have this - then do that" - as the solution. Wouldn't it be great, if things got figured out to that level?

Issie

[issie]

I found a really interesting article on Baroreflex Failure. Most people with it responded well to Clonidine. Did Dr. G have any ideas why it didn't work well for you NM?

http://www.nejm.org/doi/full/10.1056/NEJM199311113292003#t=articleTop

This is from the New England Journal entitled Diagnosis and Treatment of Baroreflex Failure. Really interesting article.

Issie

[NMPotsie]

Thanks Issie. I was checked for pheo, so that's not the issue; it seemed like they just thought it was the exaggerated response to the hypotension caused by clonidine. I have low bp without meds; supine around 100/60, and on meds it runs 90/60 area. When I have spikes, it gets up to 180/160; once it was higher at the ER, but I couldn't tell you specifically what it was because I was a mess and don't remember. My general definition of higher, for me, is when it gets up into the 140/90-150/100 range, but again it goes much higher than that with a spike. I was told to go to the ER if it gets over 100 on the bottom number and stays there for very long (sustained). The other day it was 150/54, and dropped to 130/60 within a few minutes, so Dr. G said not to worry unless it is very high for awhile.

All he really said was that I have an overactive sympathetic nervous system and when my bp gets low I pump out tons of ne and then it goes the other way to crazy high. I have very low sodium levels, so that's why he told me to eat 10g per day. It is very funny how we all react differently to everything. My impression is that it depends on the "root cause" of why we experience pots symptoms (ie in my case hypovolemia and hypotension).

[issie]

My bottom number stays up around 100 almost all the time and that is probably because of the diastolic dysfunction of my left ventricle. It is pretty scary - cause that will go higher - as will my systolic go above the 150 mark pretty regularly. I don't usually go to the ER - but, the one time I did - I think it was related to a mast cell issue and took tons of anti-histamines before going and then when I got there they gave me nitroglycerin and I begged for an IV and they allowed me to have one. An over-night stay that time. This is the treatment given for a mast cell disorder that can affect the heart called Kounis Syndrome. Also, if you're into alternative medicine - if your diastolic is high sometimes it can be related to liver issues and I've found that magnesium will bring some of this down. I will drink Epsom's salt - to get it into my system faster and my bp will come down.

That is high bp's on you. I know how miserable that is and I can swing to very low at times myself. I think the lows - make me feel worse than the highs - to tell the truth. I think that's because the tachy kicks in to bring my bp's back up - even when they don't really need to be that high. My body thinks it does. I did find that the clonidine balanced the extremes out for me and made the lows less and the highs less - I was more in-balance with it. Like I said though, the fatigue was horrible. But, for awhile of not so much tachy ----it was soooo worth it.

Issie

[Wendy C.]

McBlonde, how long have you been on Florinef? My guess for your dilemma is that if you've only been taking Florinef for a few weeks or months now, your body has finally changed/adapted to it and can now retain water and salt, like it couldn't before the Florinef. Now, with fluid and salt retention occurring, you are getting the subsequent high blood pressure. I recall a post on here where someone (Kimbellgirl maybe?) said their doctor recommended a certain dose of Florinef for a few weeks until the body stabilized, then a lower maintenance dose. I noticed that I only needed it for about 5 weeks for my body to do somewhat of a reset and begin to retain fluids. It wasn't as drastic as yours sounds, though. It only changed my BP from around 95/60 to 115/65, so it caused widened pulse pressures for me. Anyway, just a guess for you....

[Kor1212]

NMpotsie how do you get in 10 gms of salt? I have apt with Dr G in 3 wks, after consulting with my PCP and my records that is what he said....10 gm salt diet. My BP runs low too 90-100 over 50-60's. In the past several months it has been dropping to 70/40 with tachycardia with standing ( positive tilt table test). I am now on Florinef and Midodrine, 2.5-3 L fluid per day and trying to get 10 gms of salt. I tried salt tabs, I was really nauseated. I eat pickles, nuts, pretzels, top ramen, and salt everything! Last week I was experiencing headaches In the afternoons, my BP was 130/90's. I tried water and salt increases, didn't help, Advil did. A few days ago I decreased my Midodrine and haven't had a headache. It has also been in the 90's the past couple of weeks, and I have been trying to walk 30-40 min 3/wk after being essentially couch ridden all of June. I guess my point is to other posts- it seems like we all change on a weekly basis and you have to find what works for your body at that time. Docs are not going to give you the answer!

[issie]

I guess my point is to other posts- it seems like we all change on a weekly basis and you have to find what works for your body at that time. Docs are not going to give you the answer!

I think this statement is so true. We have to pay attention to what our body is telling us and act/react accordingly. Things may work for awhile, and then we need to make a change. A doc can't be with us 24/7 but, we know how we feel and what our body is doing and we can somewhat figure out what may be going on. Things do change. GOOD POINT! I like that post.

Issie

[Relax86]

I've been posting about my recent change from low BP to a more normal BP. Recently it's generally running 116/68. It drops here and there - so I don't believe it's stable there. I lightened up on my salt intake since the BP wasn't low and I'm generally feeling worse. I have more R ear pain, more R neck spasm {never knew if it was nerve (vagal??) or my carotid (I now think it's my carotid)} pain now into my upper R jaw, perception of facial weakness and R arm weakness. Also the vessels in my hand turn very blue and pop out - usually at night when I get into bed to rest. Who knows. I may think about giving fludro another try. I took it twice back in January and felt terrible. But my body might be more accepting now - unsure. I have 2 docs that just say to give things a try. It's hard to medicate yourself when you don't know exactly what you're doing and also usually respond poorly to meds. Any thoughts would be considered. Anyway McBlonde ~ I found myself hoping for my low BP's just because that's what I know. It's ridiculous I know but symptoms that keep us guessing are very frustrating. Makes it nearly impossible to find recovery. Good luck

[McBlonde]

McBlonde, how long have you been on Florinef? My guess for your dilemma is that if you've only been taking Florinef for a few weeks or months now, your body has finally changed/adapted to it and can now retain water and salt, like it couldn't before the Florinef. Now, with fluid and salt retention occurring, you are getting the subsequent high blood pressure. I recall a post on here where someone (Kimbellgirl maybe?) said their doctor recommended a certain dose of Florinef for a few weeks until the body stabilized, then a lower maintenance dose. I noticed that I only needed it for about 5 weeks for my body to do somewhat of a reset and begin to retain fluids. It wasn't as drastic as yours sounds, though. It only changed my BP from around 95/60 to 115/65, so it caused widened pulse pressures for me. Anyway, just a guess for you....

That's a great guess!! But.... I've been on Florinef since 2003...same dose of 1 mg.. Isn't that crazy!

[McBlonde]

Thanks for all the responses everyone!! When I woke up this AM, the first thing I did was to check my BP & HR "just to see"... It was 136/89 with a HR of 95 when I woke up. The highest it got was 150/94 and in between times it was 98/80, 108/71,123/84, 135/82 and now tonight it's 126/82 with a HR of 87.

I have been very Blessed today not to have one of the BP headaches and I am so thankful for that. When I get up, it either drops 50 points or goes up 40 points & that seems to be what triggers the headaches.

I have been taking the Florinef since 2003 to raise my BP (but still "drinking like a fish & peeing like a racehorse" as the saying goes) so since I have had these high numbers and since I was peeing out the fluid as fast as I drank it, I stopped the Florinef the last 2 days. I cut my G2 down to 3 and eliminated my V8 with salt & increase just plain water. But, I have no idea it that's the right or wrong things to do. If I wasn't having the headaches from the surges & drops, I wouldn't worry about it, but those headaches stop me in my tracks.

My doctor wants me to take Wellbutrin or Clonidine. He said the Clonidine would lower my NE at night and therefore my BP & HR. I fear the fatigue & blues happening again. It's so hard to know what to do!

[NMPotsie]

Hi Kor! As I said, I'm not sure I get exactly 10g per day, but I drink 3 cups of msg free chicken broth/day and I salt it (it has replaced coffee as my a.m. beverage of choice), v8, pedialyte, and coconut water. I buy the flavored coconut water and put my ground sea salt directly in it (it masks the flavor). I also put salt on everything I eat but not so much that it hurts my belly, just enough that it's past my taste level but still edible. I also put a couple of turns of salt in my water. I've heard people say they've tried it and it's gross, but honestly if you get used to salt you don't even notice it. People in restaurants look at me funny though because I carry my own salt and put it in my drinks.

I didn't respond well to the salt tabs; they made my stomach burn and I already have some kind of acid reflux issue so it just didn't work. This is a lot of salt but doesn't feel like it because it's with other things, I guess. Again, this is what has worked for me. It seems like we all have different orders, even with the same doctor for some of us.

Like others, when my bp is high I take it easy. Today at the doctor my bp was 141/98, which is much higher than my normal number, so I just did salt in my food but didn't add it to my liquids. I also took half a xanax, just to avoid a possible surge. Tonight it's back to 101/60.

[NMPotsie]

ps It's a little thing but my doctor has encouraged me to eat a bit of dark chocolate every week because of the anti-inflammatory properties, and I found these chocolates with sea salt that are yummy. I don't really like chocolate (I've always had a salt tooth, not a sweet tooth) but these suckers are yummy.

[NMPotsie]

Sorry for posting again. Issie I forgot to address something you said. It wasn't that the clonidine didn't work for me. It worked very well and brought my bp down well. The problem was that it got so low that when the drug wore off I experienced rebound hypertension. If I had stayed on it I'm sure it would have stayed down, but I felt like a zombie, was exhausted, and generally hated it. I would rather find ways to manage my surges than feel the way I did on clonidine because I still work and I would not have been functional. It just wore me down too much. The last time I saw the doctor, he suggested adding xanax to my daily propranolol in the a.m. and p.m., and I had a similar reaction with a zombie-like state. I just can't live feeling that out of it at this point.

The doctor just said it wasn't the right med for me.

[issie]

I got ya - NM. That happend with me and propranalol. It worked but the rebound was awful. I didn't have that with the clonidine. But, it did make me very, very tired and I agree ---I didn't like that. Off of it now. But, if I start having those weird drastic swings again - will go back on and get leveled out and then come off again. I stayed on for about a month and now things are more level.

Issie

[Kor1212]

NM-thx for reply. Can you give examples of types/brands of the products you use (chicken broth, coconut water, sea salt)? I am finding the more salt and fluid I do the better day I have, and the more stable my BP is. I'm not much of a shopper but if I know what I am after it might be easier. And the dark chocolate with sea salt? I too am more of a salty than a sweet tooth, but it might be a nice change!

Like you when my BP was 130/90 last week I felt bad and had horrible afternoon headaches which were worse when lying down yet I was too fatigued to sit up...ugh. (sounds like McBlonde ) I decreased my Midodrine and continued salt and fluids and am better this week.