Topic: Orthostatic Hypotension/Can't Stand or sit upright
Rivendell
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Member # 19922
posted
Does this ever get better?
I've been sick for about 15 years before knowing what was wrong and getting treatment for Lyme and Cos..
Treated for little over a year and this condition doesn't change, inspite of increasing salt, florinef, licorice root, midodrine.
Those things help, but don't get me well. Just keeps me from feeling like I'm dying.
Sometimes I even get my blood pressure too high from the above strategies, and still feel weak and lightheaded when stand for longer than about 3 to 5 min and sit upright longer than about 20 mins.
So anyone get well from this type of autonomic dysfunction?
Thanks
(Seeing LLMD and being treated for Lyme and Bart for a little over a year. Been using the above strategies for Orthostatic Intolerance for over 10 years.)
Posts: 1358 | From Midwest | Registered: Apr 2009
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droid1226
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Inderal and treatment were the best two things to help me. I still have it, but it's waaayyyy less.
lax mom
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Member # 38743
posted
My BP actually rises when I stand and my heartrate goes crazy. I'm on Digoxin for regular tachycardia but plan on asking my Cardiologist for propanolol.
beths
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Member # 18864
posted
Mine was really bad for a while, I could barely stand. Treating babs/lyme and Bart helped, as did trying to exercise. Very short walks till eventually I could do a mile. Staying in bed makes it worse.
I don't notice it much now, unless I'm herxing. I saw several Dr's -none wanted to give me anything for it
Posts: 1276 | From maryland | Registered: Jan 2009
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lax mom
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Good idea beths about exercising. Staying in bed does make it worse. I am going to try to use a recumbent bike to build up some strength.
Bugg
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posted
Vanderbilt University has one of the best POTS clinics in the country. People with the worst cases of POTS from all over the world go there. Sorry you are suffering with this.
Incidentally, I wound up in the ER because I was having these episodes of my legs feeling weak and my heart racing upon standing. In fact, they made me stand in the ER and I fainted. Anyway, it turns out I should not have been given thyroid medication which sent me into a hyperthyroidlike condition. That combined with low vitamin d levels was causing this. When I stopped the thyroid med and got my vitamin d levels in the normal range that nightmare stopped.
I am so so sorry you are suffering
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I hope you start feeling better soon. My cardiologist gave me inderal la and has me eating a high salt diet and drinking plenty of fluids and gatorade for electrolytes. I still have spells of it but it seemed to help some. The florinef made me feel insanely worse. It's a steroid which is no good for lyme from all i've learned. Of course that was dx. I hope you feel better soon!
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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lymetwister
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posted
I hate to be negative, but these so called "Experts" know nothing about POTS or Dysautonomia as far as getting symptoms under control for most of us.
I have spoken to the top guys by phone and email. I can mention their names, but you know who they are. Again, these are the top guns for this stuff. What I heard from all of them is that they don't understand at all "Why" any of this is occurring. Even if you take a Beta Blocker and get the Tachycardia down, most symptoms remain.
At best, they can use Ultrasound equiptment which shows blood pooling in the lower extremities, but there is so much more going on that they don't understand, so sure, if your Orthostatic, increasing blood volume by increasing salt intake should help a bit, but it's not going to do too much because it's the infections that are all over our Nervous Systems.
Spirochetes intertwined between millions of nerve fibers. Remember that Squirrel that touches 2 phone wires at once and gets fried ? It's no different with us when this stuff gets in our brains. All of the signals are screwed up going not only to the heart, but to the lungs, stomach, kidneys, bladder, pancreas, etc.
I start sweating like crazy after even a small meal because my body is trying to send more blood to my digestive system to break down and utilize the food I eat. All of that shifting of blood creates imbalances throughout the body.
Some of us do better while we are actually up and walking around, but stop moving and all hell breaks lose. That is pretty good proof to me that the walking around forces circulation where it should be. Kind of an "Over ride", if you will to all of this.
So, it's not just POTS, but the bigger picture of Dysautonomia, which is really just a medical term for all of this craziness that goes on in our bodies.
Get rid of your infection(s) and all of this stuff should reverse. Every single person that was sick with Lyme and had this stuff got rid of it once they got their infections under control.
Get this, I get emotional when I sit a certain way. All I have to do is get up and walk around and the feeling like I'm gonna cry goes away. Alot of my anxiety, same thing.
As an RN, probably my biggest knowledge was in cardiology. I studied this area very hard throughout my career. I can read EKG's in my sleep just as well as some of the best Cardiologists.
Let me finish by giving my own personal opinion about Beta Blockers and drugs like Florinef, etc. If they help you, then go for it. If they don't, I say let the heart race. Remember, the body is always striving for Homeostasis (Normalcy). I honestly believe the Tachycardia is a compensatory mechanism secondary to the crossed wires I speak about above.
I can't prove a thing I just said, it's all theory, but if it quacks like a duck.........
Stay focused and cope as best as you can. Narcotics help me and my CNS. Xanax doesn't do squat b/c none of this is Gaba related. It's all overstimulation, so it makes sense that Narcotics do help b/c they are CNS depressants. They help control breathing when it gets out of hand as in Breathlessness or Hyperventilation. I take enough to not be a drug addict and one day I will have to deal with getting off of them. Again, I think Narcotics are the best way to treat all of these symptoms.
I'm not telling anyone to go out and buy street drugs either, but you might want to fake some pain if you don't have any and try this and see if it helps you b/c there is no way in the world your Dr. would give you Narcotics for off label use. Let them feel this crap we feel and then they would in a heartbeat, no pun intended :-)
Hope this helps some of you.. BTW, my POTS is now under control through extensive treatment. I'm still sick as a dog and I still have bad Autonomic Dysfunction, but from a heart perspective, my Positive Tilt Table test would be negative today. I tried B-blockers briefly, but I quickly stopped for the reasons above. Oh, and lets not forget, B-blocker are known to cause depression. Like we need more of that right ?
Again, forgive me for speaking in "fact" mode, but I really think I have a good handle on alot of this stuff. All we did was spark a new set of Dr.s to treat symptoms instead of Lyme.
I agree with the Exercise post. I totally disagree with taking Digoxin unless you have a true Arrhythmia. The increase in BP some of us get while standing is know as the Hyperadrenergic type of POTS.. Basically, just adrenaline surges, again, from the crossed wires. Over exaggerated response from standing. I think so much of this accounts for many of the symptoms on the long list of symptoms on the Lyme and Co. symptom list including Lyme rage.
Oh, I almost forgot, you might want to try some Liquid Benadryl with your attacks. I have found that many of the POTS folks, including myself have inappropriate release of histamine. It's not a Cutaneous release necessarily producing a rash, but rather organ related i.e. in the lung=shortness of breath, in the brain=over stimulation b/c Histamine is an excitatory Neurotransmitter in the brain. Shouldn't be released in the brain to start with, but histamine is in all the Mast Cells, so trip the wire and it gets released wherever...
I guess thats enough for now... Hope you feel bettter..
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lax mom
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And I found it helpful because it states: "Another frustration for patients can be the slow rate of recovery. The autonomic system's nerve fibers do not have a sheath that guides their growth and acts as a protective layer. Without that protection, they are more fragile; without that guide, they take longer to regain strength and normal behavior. 'It doesn't mean that regrowth won't happen," Jaradeh said. 'It's just a long tunnel before you get to the light.'"
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Just watched it -- has anyone seen this doctor? He seems great.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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lymetwister
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Member # 19590
posted
We can't post names on here, but this is one of the Dr.'s I was speaking of, but there have been others.
Again, they don't understand it, but only try and treat the symptoms, most often, they are unable to. Some get the POTS diagnosis and look no further. There is always a cause and it appears that every case I know of is Lyme related.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lymetwister
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Member # 19590
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I just watched that video. You know, I find it funny how medicine calls everything they don't understand Auto Immune. Every single person I've met with POTS has Lyme. Of course there are those who were told they had POTS that never seeked out a further diagnosis. i.e., they settled on Beta Blockers, etc. I'd bet my last dollar all of these cases are Lyme. I honestly believe POTS is actually a Babesia Symptom more so than from the Spirochete.
Point #2: At least he doesn't like Steroids
Lastly, did you hear where he find Aspirin therapy helpful in POTS patients. Perhaps b/c of the Hypercoagulation we find in Babesiosis. Nothing else would make sense to me.
What do I know, I'm just an RN, lol. I can only tell you, my conclusions I drew above in my 1st post on this thread came from my own research. It's time these Dr.'s bring out the Darkfield Microscopes and Electron Microscopes.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lax mom
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Member # 38743
posted
Wow lymetwister.
I would always have sweats. My LLMD said it was Babesia. The Babesia treatment made me feel worse. Then when my Cardiologist RX'd Digoxin, the sweats stopped.
So, I figured my LLMD must have been wrong about the Babesia dx.
What you say makes a lot of sense now. Just because the Digoxin stopped the sweats doesn't mean the cause was a heart defect, it meant the Digoxin was covering the symptom.
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
If Babesia meds made you feel worse "Herx", don't you think you were hitting Babs ?
The other symptom that seems to hit most of us with Babs is that Swaying sensation while sitting still. I see it alot in the POTS scenario, but if you look at the Babs symptoms lists, you see it there time and time again, they say "not a true vertigo", but a "tipsy" feeling.
Look up Mal de Barquement syndrome and it describes this sensation much better.
I start my 2nd round of Coartem tomorrow as I'm all over my Babs now. I know it isn't Lyme anymore. I wish I would have done this drug a long time ago. My CNS goes nuts, or it did with the first round just 2 weeks ago. I'm ready for it this time. Lots of Benadryl and Pain meds, Xanax, etc. It's pure hell.
WA1 Duncani is my Strain. PCR pos. through Igenix, and some IGG through Labcorp, same strain.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
You're welcome guys for the info on Dr. Grubb..he has a waiting list of about a year. We know there's no 'magic' answer but it might be one piece to a bigger puzzle.
@lymetwister, yes, we are allowed to post Dr.'s names as long as they are not LLMD's which Dr. Grub isn't. I already checked with the moderators.
Posts: 394 | From Southeast | Registered: Oct 2012
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posted
I have POTS and my BP drops and HR goes up when I stand or exert myself. Been in treatment for Lyme/Babesia/other co-infections for about a year now. At one point last year I didn't need the beta blocker I have been taking daily since about 2009. Then it got a bit worse again and now it's better.
So yes, I think it CAN improve. For me personally, I think Babesia has affected my nervous system causing POTS. As you reduce levels of critters and build the immune system your body should heal overall.
Posts: 165 | From TN | Registered: Jul 2011
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Rivendell
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Member # 19922
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Wow, thanks everyone.
I haven't been diagnosed with Babs (yet), just Lyme and Bart.
I honestly benefit the most from licorice root and green tea.
Years ago, I was given the beta blockers, but they made me feel like !#@!, so I stopped taking them.
Yes, exercise helps. Just standing or sitting upright leads to the worst symptoms.
But thhere is only so much walking that can help, and then gravity takes over. And then, guess what, post-exertional malaise that is really bad.
Well, I sure hope that killing the infections can help.
I'm glad, and sad, to learn that I'm not alone and that so many of us are dealing with this.
I have heard that the histamine response can make this worse, and I have allergies, too, so I will try the benedryl.
Thanks.
May we all be well.
Posts: 1358 | From Midwest | Registered: Apr 2009
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lax mom
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Member # 38743
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Would Claritin or Zyrtec help the Histamine response instead of Benadryl?
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