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Constant lightheadedness - HBOT help?

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Posted 8/10/2020 9:56 AM (GMT 0)
Hello everyone,

My daughter is 15 years old and has lyme and co infections and was diagnosed with POTS as failed tilt table test. She was on midodrine, and now Florinef to try and ease her constant lightheadedness. It used to be there on standing but now its there all the time. Its so debilitating. She is in bed all the time because of it.

She us being treated for lyme snd co infections and is into month 6 of the treatment with an LLMD (antibiotics and supplements).

There isnt much change in her heart from sitting to standing. Her BP is slightly on low side. I read that lyme and bartonella can affect the vagus nerve.

I brought my daughter to a bio-energist before her lightheadedness got worse and he put his hands on the back of her neck and pulled her head gently towards him, he was standing behind her head. Maybe he also manipulated the vagus nerve as well or something else? She felt some relief whatever he did. Would anyone here know?

Also, I tried to massage her neck today and she got a weird sensayion in her head when I gently squeezed the neck muscles on either side of the neck just below the skull.

I read also that HBOT can help to alleviate or get rid of lightgeadedness. Has anyone here tried that and did it work? Thanks

Any advice/help on what might help relieve this awful lightheadedness. She is in bed all the time. This is her worst symtom.
Thank you.

Post Edited (Blueberry) : 8/10/2020 5:10:18 AM (GMT-6)

Posted 8/10/2020 2:56 PM (GMT 0)
Hi, Blueberry. There have been a few other threads about HBOT here recently. People seem to find it helpful for temporary relief of symptoms, but usually cannot afford enough sessions to make any difference long-term or as an antimicrobial treatment. It was mentioned a few times in the recent Lyme summit webinar series, and a few of those doctors mentioned biomolecular oxygen supplements as well: https://microbeformulas.com/products/biomolecular-oxygen

I wish I had a more definitive answer for you, but lightheadedness relief really depends on what is causing the lightheadedness. :-/

The neck issues you mentioned bring up a few things for me. First, have you tried craniosacral therapy? A skilled practitioner can have dramatic effects on unwinding tension in that area and in the nervous and circulatory systems more broadly, really restorative. Some people see chiropractors for alignment help, but that's a different thing and can be too drastic for those of us with sensitive nervous systems.

Second, have you looked into craniocervical instability? It's usually missed because diagnosis requires imaging to be done in an upright position. (Jen Brea, CFS/ME sufferer who made the excellent documentary Unrest a few years ago, figured out that her disabling symptoms were caused by craniocervical instability, and now is healthy following surgery for it.) https://chronically-awesome.com/craniocervical-instability/

You're totally correct that the vagus nerve can be strongly affected by these infections. Practices that tone the vagus nerve can help. Other practices and supplements for the nervous system might be a good idea as well: lion's mane, magnesium threonate, DNRS limbic system retraining, breath work, stress reduction, curcumin for inflammation, etc.

Your description of the POTS diagnosis puzzles me. What is the difference between her heart rate lying down and her heart rate standing (or what was the difference pre-meds)? If it's not at least 25 beats per minute, then what she's dealing with isn't POTS by definition, and she failed the tilt table test for some other reason. It's odd to me that you say her heart rate doesn't increase much with standing yet she's lightheaded all the time, since that's not really a very POTS-like pattern. POTS and other forms of dysautonomia are unfortunately common with Lyme, but if it's not actually POTS, then it might be good to know what's going on.... Are you doing other things for POTS as well, like proper water intake, high salt intake, and compression stockings? For some, those things are enough to make it manageable.

I'm sorry to hear that she has not seen any improvement after six months of LLMD treatment. That must be disappointing. Does the LLMD have any plans to look into other issues at this point, like mold toxicity or viruses? Which supplements is she taking?

How is she doing mentally? I'm sure it's terribly hard on a 15yo with this type of life-changing illness. And how are you? It's so difficult to see your child suffer, so feel free to reach out here for support for yourself, too. She's lucky to have a caring parent researching and fighting for her!
Posted 8/10/2020 3:35 PM (GMT 0)
My initial thoughts were exactly as saraeli's. If there's no change in BP or heart rate upon standing, then it's not POTS. Who did the tilt table test? And did they note a change in BP, heart rate, or both? If it is POTS, metropolol can help. Does the midodrine help at all?

In addition, is she on any supplements that the LLMD ordered. Lumbrokinase did exactly this to me. I literally was dizzy ALL the time on it, it was quite extreme and miserable. I thought I had POTS until I made the connection. I was dizzy/weak even when laying down, but dreaded standing up. Its interesting that upon reading your post a second time, I noticed you mentioned her BP is on the low side, which is what I was going to ask, hows her BP? Low BP can cause this type of dizziness. Lumbrokinase thins the blood and lowers BP, hence the reason it can cause dizziness. I think if you figure out why her BP is low, you may figure out the dizziness. How's her thyroid?

Post Edited (dcd2103) : 8/10/2020 11:15:56 AM (GMT-6)

Posted 8/10/2020 4:45 PM (GMT 0)
on lyme net there is a long thread on HBOT, I would post there and ask as those guys really know their stuff. Most there use the soft side home units.

I can't post a link as this site will censor it, but if you google "lyme net Mild Hyperbaric Treatment" it should come up, close thes pace between lyme and net.
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