Summer3
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posted
I am going back to the cardiologist for a scheduled appointment. I'm on Toprol XL which is controlling my irregular heartbeats well.
I'm also on Florinef. I eat and drink enough. I get more than enough salt. I'm still getting very close to fainting nearly daily. My BP is still low some of the time (but better than it was).
What now? What can he do other than that for this symptom?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Have you told your LLMD? The various nervous system dysfunction with lyme can certainly cause fainting, near fainting, that feeling of coming close, too.
I am all too familiar with it. Used to go down dozens of times a week.
For me, NMH and an inner ear involvement were clearly to blame but ALSO the various vasovagal involvement that is not just heart, not just MNH, and not just the heart.
Your LLMD should be guiding you here, and which experts you should see about this in YOUR case. although many of us here have dealt with this, the particulars can vary.
Perhaps you should have a vestibular work-up, too. by a LL neurotologist. It may not solve a lot in terms of treatment as addressing lyme, supporting the body is what it comes down to . . . but it could explain some things and get you into a LL vestibular therapist for some safety training.
Where you look, even the lights around can all matter. The right lights can prevent fainting. The wrong ones (fluorescent) can cause it.
Anyway, get back with your LLMD about this. They need to guide your steps here. While certain other specialists certainly can help to some degree, if they are not LL and consider all there is in the mix, they cannot possibly help us to the degree that we need.
I never had access to a LLMD or LL ND beyond a few consults. I'm still very ill. But the fainting stopped a few years ago. I can't say why, exactly. I do what I can, of course, even if comes up short. ANDROGRAPHIS seems to have been a big helper for me staying upright. ALLICIN, too.
I could never tolerate florinef but adrenal support helped.
Just know that this can get better.
I will say that Qi Gong did help a lot. That was my "vestibular training" of sorts. Also avoid ALL fluorescent light is essential - and all scents. Nothing will make me pass out more quickly than someone's cologne, still, or a flash camera.
But you may have other triggers. Try to figure out the triggers and you may then develop your own coping strategies while you work through infection treatment and body system support.
I hope you find what works for you soon. -
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lax mom
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posted
Have you tried IV saline? I am going to ask my Cardiologist about it tomorrow. It's supposed to help POTS.
Summer3
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posted
Unfortunately I don't have a LLMD anymore Keebler. I was dropped unexpectedly so lost all access to abx and Lyme-literate medical advice. I can't afford another one so I'm self-treating. Anything potentially serious is automatically referred out now to "mainstream" doctors.
So I was sent to the cardiologist for an episode of A-Fib and he detected other arrhythmias and put me on the beta blocker and Florinef but I never received any explanations from him and I don't even have a definitive diagnosis. He only mentioned SVT, and narrow complex tachycardias. I also had a lot of PVC's, PAC's, atrial runs and sinus arrhythmia. My triggers are eating large meals, along with random mid-day episodes between 1-3 p.m. My BP runs pretty low during these episodes (85/45) and I've already tried salt, water, licorice, etc.
Lax mom, I am VERY interested in IV saline but I don't have a port or PICC. Is that something that mainstream cardiologists (not Lyme literate or specific dysautonomia doctors) would even consider as a standard treatment? If so, I'd definitely do it!!! I'd actually jump at the opportunity knowing how beneficial other injected substances are to me (B12 and glutathione).
posted
Ask him to consider Verapamil .. a calcium channel blocker. It is used for A-fib.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
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posted
If you feel like you're going to pass out, get your head down. If you're sitting in a chair, get your head down to waist level. You'll need to spread your knees apart, it's not very "ladylike" haha.
If you're standing, back up to a wall. Slowly bend your knees as you lean against the wall, so that you end up sitting on the floor.
In a store, find a pillar to do this. It may be embarrassing, but it's better than falling and hitting your head.
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lax mom
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I don't know Summer, but I'll let you know tomorrow after I ask my Cardiologist.
I keep researching online and it seems like a pretty common treatment. Temporary yes, but I'll take it!
I ALWAYS feel better when I have IV fluids, ex. in the ER. My last ER visit, I begged them for more fluids! Nothing at all helps me except Glutathione. So, I desperately want to try IV saline.
Rumigirl
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Member # 15091
posted
Midodrine is another med that is used for NMH (Neurally mediated Hypotension) and POTS. It stimulates the sympathetic nervous system, which helps to raise the BP.
But before you do that, you may need an increased dosage of Florinef, along with the beta blocker---or calcium channel med.
It's not always easy to find the exact right fix or dosage.
Why didn't the cardiologist do a tilt-table test?? As we have said before, you need someone who specializes in this, not a run of the mill cardiologist.
Ask you local or state Lyme Support Group who is good for this. There's a link on the left of this page for support groups by state.
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Summer3
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I have asked my state Lyme group. We don't have many specialists in my area. Financially I cannot pay OOP and my insurance, like most of them, limits who I can go to. As I've mentioned in other posts, I am not a fan of this cardiologist because he doesn't explain anything to me and he literally spends less than 2 minutes at an appointment. However, supposedly he is the "best" one locally and that comes from several colleagues that I know personally who are VERY honest with me when it comes to recommendations of other doctors. They give me specific reasons to avoid certain ones that I wouldn't know about without the inside info.
I don't know why he didn't do a tilt table test. I would doubt that he has access to that equipment locally (I'm being completely serious our hospitals/medical facilities are not state of the art). He originally thought the fainting was the heart rhythms mainly tachycardia and SVT. I reminded him of my very low BP that conveniently is never low in the office last time thus the Florinef trial.
I don't think I would fail a TTT. I actually have more of a problem going from standing and active to sitting in terms of fainting then sitting to standing. Unless something really odd happened during the test or the IV isopropol medication strongly provokes an episode, I doubt I would faint just from the shift in position. That's not usually how my fainting is triggered.
Usually for me it's from eating a large meal or also mid-day randomly. It's almost always when I'm sitting or not doing something active and keeping my self moving. My BP is usually low at the same time.
Today I woke up feeling "off" and my BP was 83/45. Yesterday was the same and I was near-fainting many times. I hope today doesn't go like that. I am in fear the whole day because I have actually fainted many times and I never know when that will happen.
I went through the exact same thing as what you are describing in your posts - in fact its like reading parts of my journal.
Like you, my local hospital/cardiologist did not have the tilt table equipment so I was referred to a larger hospital about 30 minutes away for the testing- can you self refer yourself to a different cardiologist?
I was definitely TTT positive (this was about 3 years ago), showing BP of 50/10 at its lowest.
As lax mom mentioned you likely need something like midrodrine to keep your blood pressure up. It should make a huge difference in how you feel.
Midrodrine was a big game changer for me in addressing the low blood pressure and got me back on my feet.
Thoughts and prayers for you.
ETA - re-reading your post - having low blood pressure problems after eating was a big issue for me too - still is today. Treatment (Midrodrine or otherwise) helped immensely early on - Nowadays, licorice root extract has helped in keeping my BP more stable.
Also, just like you sitting in a chair during the day would be an issue - typing away on my keyboard, and all of a sudden my BP would drop and I would get faint, needing to lie down on the floor to feel better
I believe it is all part of the same thing.
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Summer3
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Well I'm lying in my car in a parking lot very faint. I can't sit up. It will pass, but I wish I had a better response to the florinef and toprol.
I thought treating this issue symptomatically would be easy and something any cardiologist could do. The first few weeks my bp was headed up, but this week has been really bad. I don't understand why treatments don't work well for me. Apparently it's not only Lyme treatment that I don't respond as expected to.
I'll probably be dropped by the cardiologist now like my llmd and left to figure it out on my own as usual.
Keebler
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posted
- Seeing how you just wrote this, I hope you can call a friend to take you home (and another to get your car home, now or later).
Your response is NOT unusual, really.
MOST of those with lyme do not respond as expected to many medicines for "other" issues. And most doctors who know nothing about how lyme changes a body will have no where to turn if their handy Rx pad doesn't work.
This is very common, actually, but outside of the "lyme circle" it can seem very unusual.
I learned after many trial and complicated errors that I just could not approach ANY of my symptoms with the typical Rx. I have found relief in other ways, though with key supplements.
Now, there may still be a way, with time that your Rx will work for you.
Still, even if you have to taper off the meds and move to another approach, this can get better. There is always another way.
(Since you lost your LLMD) Might there be a LL ND (naturopathic doctor) near you? Even if not, there are articles and books. But right now, rest is key.
And, as for targeting the cause, lyme, et.al., there may be a rife machine near you that you could somehow access, other protocols, etc. It would be best if you could find a LL doctor yet, if that is not possible, there are still other ways to address both focus areas of: causes & symptoms.
Today, just be sure to take care of yourself. I hope your autumn is at least offering you a pretty show. Hugs. -
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Keebler
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- Dose. It could be the dose. Often for those with lyme where the Rx does not work, a much - much - smaller dose will get the trick done. That approach never did work for me but it has for several others, I know.
Just something to consider for prescriptions other than those that are anti-infective. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I could not get the combination of florinef and a beta-blocker (like toprol) to work for me even with increased dosages over time.
It wasn't until I swapped the beta-blocker for a vaso-constrictor like Midrodrine that I felt better.
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lax mom
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I agree with Keebler. Summer, you're not alone with your inability to tolerate meds.
BTW, I asked my Cardiologist for IV Saline and he said no. He didn't want to try something that "risky" yet.
Are you wearing compression thigh highs (at least 20-30 pressure) and an abdominal binder? They help me slightly. I was able to get to the Dr today only by wearing them.
quote:Originally posted by lax mom: Ok, what other disease would have a person looking at a website for IV SALINE like a crack addict looking at some drugs?
Isn't it weird how your body just "knows" what it needs?
What about just drinking some water with himalayan or celtic salt it it? C pould you be mineral deficient... and Im talking trace minerals here.
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Also, just like you sitting in a chair during the day would be an issue - typing away on my keyboard, and all of a sudden my BP would drop and I would get faint, needing to lie down on the floor to feel better
- Same with me. I'm doing way better with my heart issues now that I'm taking a good magnesium, but I am more likely to feel faint while sitting at the computer.
My main issue is A-fib and tachycardia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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Gee, summer, this is really scary. And tough considering that there are not any better choices available to you now.
It does sound like Midodrine would be a good choice for you to ask for and try---and/or to try a higher dose of Florinef. But likely to try Midodrine first.
Those are mighty low BP #s!! I know from experience how frustrating it is to deal with this awful symptom.
Wow, 2 minutes per visit?? How could he possibly give you what you need? Well, if you can get this rx and try it, that would be a start.
Sadly, it doesn't sound like your doctor understands what you have. But if he will just give you the rx to try, you could start there.
Please don't project that he will dump you (hard as that may be). Try to be positive about it, and hopefully you will get the rx.
Along with everything else, we have to be masters at "managing" our doctors, too! Sorry it's so tough.
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Summer3
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I know. This situation completely sucks. I actually had the cardiologist speechless last time and he is normally abnormally confident with himself. He didn't have any idea about all the other symptoms I have and that solving the fainting is just going to knock down 1/20+.
He probably wouldn't have even tried the Florinef had I not "reminded" him that when I'm not in a doctor's office, my BP is very low. When I'm there it's always normal, but I'm very stressed.
Toprol XL actually HAS been extremely helpful to lower my heart rate and stop the arrhythmias I was having. As long as I'm not late in a dose, my heart is beating fairly normally. I just feel like an addict and have to have my next dose ready all the time which I'm not used to. Otherwise my heart beat is completely irregular. So I hesitate to switch things up too much and then have the arrhythmia and tachycardia get out of control again.
I've read about midodrine a little. That's also okay to use in Lyme? Lax mom, I'm sorry that your cardiologist wouldn't allow IV saline. From what I've read, you have to find a "specialist" to access that as well just like for Lyme treatment.
I wonder if raising the dose of Florinef or adding a second dose would help. Maybe I should try that. I feel like this cardiologist sometimes doesn't use logic and common sense. When I was getting STRONG rebound arrhythmias in the afternoon shortly after starting Toprol, he suggested to half the dose and I was thinking really..........?
It sure seemed like I was rebounding when the dose wore off to me. So then he raised it instead. But is it really necessary to constantly have to suggest what to do to every doctor? Shouldn't he know what he's doing for a symptom he supposedly deals with all the time in the general population?
Keebler
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posted
- You are doing adrenal support, right? Because lyme messes up the adrenal function so badly - and that is connected with how your body is able to hold sodium and other minerals.
And the magnesium deficiency also goes along with lyme so I hope you are supplementing with magnesium as that can also really help heart rhythm and stability.
I wish you luck & patience. Remember that it may not be a good idea to try to force the body to do what you want it to do. I understand not wanting to hit the dirt (and I sure did that a lot). But once I got the message that my body needed intense, aggressive rest, and could do that, the fainting became less.
Your body may be crying out to rest, rest, rest. I know there are so many possibilities and I hope you can cut through all the considerations and get the main message from your body for the immediate steps to take, at least for today, tonight. Take care. -
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Summer3
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Yes for adrenal support I take licorice, rhodiola, ashwagandha and ginseng.
Unless I'm not absorbing magnesium orally, there should be no way for me to be deficient. For years I took 2000-3000 mg daily to control my heart palpitations and twitching (with no GI problems oddly). I recently had a magnesium test and tested normal (although I know that test is not accurate unless you are critically deficient). I now have cut back on magnesium since going on Toprol to 800-1000 mg. since I no longer get severe heart palpitations continuously.
I definitely need more rest. No question about it. I have been taking an herbal sleep product by futurebiotics (relax and sleep) and normally it works well. Tonight I woke up in a dizzy spell and sure enough my BP was again 90/45........I'm waiting for it to go up a little before I go to sleep again. I'm a little worried about how low it must be dropping when I'm sleeping if it's that low awake.
lymednva
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posted
I've been using midodrine for years now. It's a vasoconstrictor which helps relieve the pooling of blood in the extremities.
It can be tricky finding the right dosage for everything. With mold in my home my POTS has gone nuts and I've been trying to get it balanced right for over 6 months.
After Thanksgiving I will be getting the remediation under way. Never a dull moment.
Good luck with this.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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quote:Originally posted by Lymetoo: Same with me. I'm doing way better with my heart issues now that I'm taking a good magnesium, but I am more likely to feel faint while sitting at the computer.
My main issue is A-fib and tachycardia.
Hey Lymetoo - I have been taking licorice root extract for about two months or so and it has helped in stabilizing BP during the day. Was wondering if you have tried that?
Posts: 118 | From New England | Registered: Apr 2013
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quote:Originally posted by Summer3: Yes for adrenal support I take licorice, rhodiola, ashwagandha and ginseng. I definitely need more rest. No question about it. I have been taking an herbal sleep product by futurebiotics (relax and sleep) and normally it works well. Tonight I woke up in a dizzy spell and sure enough my BP was again 90/45........I'm waiting for it to go up a little before I go to sleep again. I'm a little worried about how low it must be dropping when I'm sleeping if it's that low awake.
Hi Summer,
Couple of quick thoughts I have.
Don't know if Melatonin is in your sleep supplement but Melatonin can have a strong effect of lowering blood pressure, so this might be causing some issues
I am not a doctor, but I think if you sleep with your feet elevated on a couple of pillows that it might keep more blood up towards your brain and help keep BP up
Sorry to hear about all of this - thoughts and prayers for you!
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