Seeing Stars when sitting

Hi all.

1.5 years post stem cells for Lyme - 4 months carnivore diet

Since the start of Lyme, I have seen stars when I'm sitting down. Twinkling lights in the outer corners of my vision. This happens when I'm sitting and have not exerted myself. There doesn't seem to be a correlation to any other activity other than sitting. Lately, it's been happening at my therapist's office while I'm sitting on her couch. It also happens at home - also while sitting on the couch. Both at night and morning. WTH?

My first thought is circulation. Dehydration? I have also had some retina issues in my left eye, which I thought had resolved. It seems like it's in both eyes.

Otherwise, I've been feeling better than I have in years. I'm still on the mend, but I'm able to do way more than I could before. Anyone have any thoughts? This seems to be common, but why when I'm sitting?? I do have neck issues (tightness and cracking) and I recently had two back to back periods (with 4 days in between).

Hey, K: It's good to see you. I'm glad you're feeling so much better...and, are still improving.

There are two instances where I have a similar issue with my vision:

1. Before the onset of a migraine. The change in vision is a warning sign for me to get home ASAP, as I lose most of my vision in both eyes, once the migraine is at its worst.

2. When rolling my eyes upward and maintaining an upward gaze. So, imagine standing/sitting in a straight posture with the head looking straight forward and not angled forward/backward and not tilted toward one side or the other. Everything neutral, no limbs crossed, no circulation being restricted. Then, while keeping my head still, I look upward -- holding my eyes at or near the maximum upward angle possible. The "stars" start very slightly and become more dense the longer I hold my gaze. However, if I roll my eyes downward -- releasing the "pressure" and looking forward -- the "stars" vanish and my vision returns to normal. It feels like the extreme upward gaze somehow cuts-off my circulation to my eyes and looking down again allows the circulation to flow again. I've no idea if that's actually what's happening, but it's the only way to closely describe how it feels.

There are two things I've done that you may also wish to consider:

First, I saw an eye doctor. Not an Optometrist, but an Ophthalmologist. I generally get a yearly exam, though I didn't have one last year, due to being unemployed. So, this is a good reminder for me to schedule an appointment, as I recently got approved for medical and vision coverage.

Second, I had a Carotid Intima-Media Thickness (CIMT) test, to check the health of my carotid arteries that supply blood to the brain. It's an ultrasound, so it's non-invasive. I was fortunate that my doctor's office had the equipment in-house and my insurance covered the cost of the test. But, I'm not sure how available this procedure might be and/or whether insurance will cover it. The CIMT test "...provides information about the carotid arteries’ characteristics and may be used for early detection of coronary artery disease as well as cardiovascular and stroke event risk stratifications." Source

Beyond those two things, you could try increasing your hydration, since you mentioned it. Personally, I'm not a believer in drinking beyond my thirst, but that's just my non-medical opinion.

As for circulation, like you mentioned, you could try gentle stretching for your neck/head. If you able, maybe something more full-body to stimulate circulation, such as a rebounder or performing jumping jacks. (I can't do either of these, unfortunately.) Maybe a massage? If not full-body, at least your head, neck, and shoulders. Tell your husband it's for "medical purposes." Or, maybe a dose of Niacin (Vitamin B3) to cause a "Niacin Flush," if you have no contraindications.

That's about all that comes to mind, at the moment. I hope you find an easy, safe, and effective solution to this issue. Let us know what you discover.

Best wishes,
Dude

K,

Yes, regarding the CIMT, I asked my primary care doctor about it. Given my age and many years of poor diet, I was concerned about cardiovascular disease. I'd read that the CIMT might be a good way to get an idea of my overall vascular health. (I think it's clinical value is still being debated.) To my surprise, he mentioned they had the equipment in-house and they performed the procedure during the same visit. The other reason I wanted the CIMT test is because, for a few years, I've been saying that I often don't feel like I'm getting enough blood flow/circulation to my brain. However, the CIMT results showed my carotids were healthy and plaque-free. I've also had several MRI scans (with contrast) of my head/neck and no major issues were observed, as far as any narrowing or blockages. Just a calcified Pineal Gland and some "minor" microvascular ischemia.

As for Niacin, I was thinking about your comment on circulation. Taking a "high" (an undefined term) dose of Niacin would cause a "Niacin Flush," as it's a vasodilator and "...helps improve circulation." That was just something that came to mind, when you mentioned circulation. However, your circulation may be (is probably) perfectly fine. There's no-flush forms of Niacin, but some folks like the feeling the flush gives them -- especially in the winter, with cold hands and feet -- with regular Niacin. However, should you consider giving this a try, definitely do your own research. I've used Niacin supplements before, but can't recall the dose of the tablets I used. I believe they were 50 mg tablets, but I'm not certain.

Though not related to my eyes and/or the "stars," I have an issue where a lot of talking makes me feel dizzy. I cannot talk in the car when driving, as I think the need for me to talk louder (to overcome road/wind/traffic noise) causes me to expend more breath and leads to the dizziness. This is my theory, anyway. However, if I'm sitting at home and talking, it's less of an issue. Then again, if I'm standing and talking to someone, I can only do that for a minute or two, before I start feeling weak and somewhat faint and need to sit down. I don't know if that's POTS or something else. It's concerning and annoying!

Keep us updated!

Dude

My first thought was circulation and blood pressure issues. Do you have POTS or other autonomic nervous system dysfunction? With that, it would be more likely to happen while standing or changing position, but I might run it by a dysautonomia specialist if you can find one. Any kind of gentle movement - even rebounding or dry brushing or massage if you aren't able to exercise - could help with circulation.

I have central serous chorioretinopathy, too, and my specialists don't seem to have any feedback about things like floaters, black specks, visual snow, etc. They suggest a neurologist who suggests I am having migraine auras (sans headache). Basically I get told to meditate more. I chalk it up to neuro Lyme and employ remedies in that vein (DNRS, meditation, burbur-pinella, PEMF, adaptogens, Jernigan Neuro-Antitox, etc.).

I will say that I like going to the eye doctor because there's a form of epinephrine in the dilation eyedrops that makes me feel jazzier than I ever feel normally!

Tangent: Are you able to treat adrenal issues (if you have them) without exacerbating your retinal swelling? My specialists are locked in a battle about this - retinal specialist doesn't want me enhancing cortisol, and Lyme specialist wants me on a thousand adrenal supplements. There was a time I needed a steroid in order to walk (due to viral myositis), but a steroid would have worsened the retinal swelling to the point of possible detachment, so I had to choose between unilateral vision loss and the use of my legs for a few months. Have you run into anything like this? How do you handle it? Have you found any help for retinopathy? Sorry for the tangent, I just don't encounter many people who know anything about this condition!

Hey Dude,

Things went well at the Retina specialist. Far as he can tell, nothing is wrong. In fact, the membrane has improved - which I attribute to stem cells. He says they look good and cannot explain the stars. BTW, I have not had an episode since I posted.

saraeli said...
My first thought was circulation and blood pressure issues. Do you have POTS or other autonomic nervous system dysfunction? With that, it would be more likely to happen while standing or changing position, but I might run it by a dysautonomia specialist if you can find one. Any kind of gentle movement - even rebounding or dry brushing or massage if you aren't able to exercise - could help with circulation.

I have central serous chorioretinopathy, too, and my specialists don't seem to have any feedback about things like floaters, black specks, visual snow, etc. They suggest a neurologist who suggests I am having migraine auras (sans headache). Basically I get told to meditate more. I chalk it up to neuro Lyme and employ remedies in that vein (DNRS, meditation, burbur-pinella, PEMF, adaptogens, Jernigan Neuro-Antitox, etc.).

I will say that I like going to the eye doctor because there's a form of epinephrine in the dilation eyedrops that makes me feel jazzier than I ever feel normally!

Tangent: Are you able to treat adrenal issues (if you have them) without exacerbating your retinal swelling? My specialists are locked in a battle about this - retinal specialist doesn't want me enhancing cortisol, and Lyme specialist wants me on a thousand adrenal supplements. There was a time I needed a steroid in order to walk (due to viral myositis), but a steroid would have worsened the retinal swelling to the point of possible detachment, so I had to choose between unilateral vision loss and the use of my legs for a few months. Have you run into anything like this? How do you handle it? Have you found any help for retinopathy? Sorry for the tangent, I just don't encounter many people who know anything about this condition!

I just learned 50 million things from reading this string of posts.

first, I get these awful “aura” like sparkles in my vision. They usually come before I get “icepick” hot hot hot pain in my brain that leaves me curled in a ball with ice pcks on my head. I describe them as “disney” sparkles because they literally come and go like magical princess movie sparkles.

second, treating adrenal issues can make eye issues worse?!? why didn’t my doctors catch this!!?? I was diagnosed with Glaucoma at age 16, right before my body fell apart from lyme. I’ve had lyme my whole life supposedly. the eye specialists said I would go blind, they said that it was worse than a WWII veteran that had just come in. Then when treating lyme, I suddenly didn’t have Glaucoma anymore........ hmmm

third, my spots in vision don’t seem made worse from POTS issues, but I don’t really get typical migraines, except these brain-feel-swollen-and-on-fire sharp jolts of pain head issues. unless that’s a “typical migraine” and I just shrug everything off as neuro lyme.

Girlie said...
Have you been diagnosed with Bartonella?
Icepick headaches are part of the bart symptom list.

It was indeterminate on my testing, but my doc thinks I have it.
i’m starting treatment in a couple weeks again.

For me the stars was always blood sugar related and insulin dependent....Cinnamon and prickly pear juice both helps