posted
Does anyone else get the blindness episodes, where you can't see at all for about an hour? I don't know if this is related to migraines or not, but ibuprofen doesn't help. I don't usually get a headache with them. Has anyone found anything to shorten them? I get them 2 or 3 times a month. It is awful when it happens at work. I just have to sit there at my desk because I can't see.
Posts: 142 | From Midwest | Registered: Sep 2015
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poppy
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Member # 5355
posted
Is this a blind spot, or at least at the beginning of the episode?
When I used to have non-lyme migraines, it started with a small blind spot and then escalated to flashing jagged shapes and very blurred vision. Not ever blindness but couldn't see well enough to do much of anything.
If this is caused by lyme, don't know if it would be similar or not. I used to take a bufferin pill with a caffeinated drink immediately after noticing the small blind spot. That would head off the rest of it.
I had headaches and eye issues with lyme but not together in the way of the old migraines.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I've had both optical migraines and optic neuritis. With the migraines my vision was like looking thru shattered glass and lasted about an hour each time. With the neuritis,i lost parts of my vision and that lasted for months.
Have you seen a neurological opthomologist(sp?)? does it affect both eyes?
Posts: 857 | From northern california | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ibuprofen CONSTRICTS all blood vessels in the body and that can make this worse. Also puts undo stress on kidneys.
That's just important to know.
I have heard of this with various migraines and with lyme. The neurological opthamologist that dogmom suggests sounds best
There could be any number of causes of this and it's important to rule out some things.
When this happens, it's best to LIE DOWN, immediately. Don't try to pretend all is okay when it is not.
Now, you may not want to tell coworkers all of it, so when all is okay, plot out the number of footsteps and tactile landmarks to a place to lie down so you can maneuver there with little drama from others.
You might have a BLOOD GLUCOSE test, just in case that's connected somehow.
SINUSES could be involved if you've had trouble there.
MAGNESIUM might help, of course, I hope you can get a few medical experts to assess you. Sorry this is happening.
MANGOSTEEN and other antioxidants that help REDUCE INFLAMMATION seem logical as you proceed to figure this out.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Be sure to know why steroids such as prednisone, etc. can make lyme worse - for a long time. You may be prescribed steroids by an eye expert to reduce inflammation. However, there are MANY OTHER ways to reduce inflammation.
Assessment from a medical expert is most important to know what's going on, if there is any structural stuff amiss.
If you have a LLMD, of course, check FIRST with them. And, after getting any prescriptions from other doctors, always run any Rx by the LLMD prior to taking it in case there are better ways to manage the problem. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
Shots (that are said to stay in one place - but that do NOT), topical ointments, creams, and nasal sprays that are steroids also pose a huge risk to those with lyme. Inhalers, too.
There are usually other ways when not in a life-threatening situation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
Sometimes it is weird flashing geometric shapes, and other times it is blackness that starts in my peripheral vision, then takes up my whole vision for about an hour. Every morning I get black flashing under-water like vision all around in my peripheral vision. I thought it happened to everyone when they are tired. My neurologist didn't think it was a problem, but he also never told me my small fiber neuropathy could be caused by Lyme. I had to figure that out myself. I guess I should find a neurological opthomologist.
Posts: 142 | From Midwest | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- Your "neurologist didn't think it was a problem" ??
Well, I assume you'd like to drive again, so, yes, it's a problem that needs to be solved. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I switched from the Mag Tabs SR magnesium to the magnesium glycinate that my LLMD recommended. I don't think the magnesium glycinate works as well so I am switching back. I take 6 of the 133 mg tablets a day of the glycinate in divided doses. I noticed that my muscles feel tight now, and the blindness episodes are increasing. I am going to order some Mag Tabs SR and see if that helps.
Posts: 142 | From Midwest | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So that's about 900 mg. of magnesium a day. You might try going higher but as you take ibuprofen, that could be too stressful for kidneys. If you stop ibuprofen (as would be best to help reduce the blood vessel constriction that causes), then you might try increase magnesium a bit.
MANGOSTEEN sounds like the most helpful to reach for now, in addition to GINGER capsules.
A MASSAGE might be good to help reduce tight muscles in your neck, jaw and that could cause tightness for eyes, too.
If you smoke or "vape" it would be best not to. Just in case that's in the picture.
Check any Rx as to side effects, too. There could be many variables. Try to keep your are as clean as you can.
I'm sure there are logical explanations, and some ways to make this a blip on the screen. Hope that is soon.
Again, this is not uncommon with lyme. And I see you just posted last week for a LLMD in Missouri.
Hope you've been contacted. There is one in the middle of the state. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler - I agree my neurologist isn't too smart. I tried a different neurologist and she poked me all over with a pin and said because I felt it and wasn't numb, I can't have peripheral neuropathy. Even though I had results from a punch biopsy that said I had small fiber neuropathy. She also told me I couldn't have Lyme because I never had an EM rash and was not diagnosed by an Infectious Disease doctor. She was an even worse idiot than the first one. And this was a so called "Center for Excellence" for neuropathy at a large teaching hospital. I am not sure how one goes about finding a good neurologist.
I don't take ibuprofen anymore since I found out I have Lyme.
Also, my recent post was looking for an LLND to help with supplements/herbs and an MTHFR mutation. I already see the LLMD in central Missouri. I was hoping the combination of the two could really help me because I am having a lot of trouble with the medications so far. Can't tolerate 4 of the 5 medications the LLMD gave me so far.
Thanks so much for your help.
Posts: 142 | From Midwest | Registered: Sep 2015
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poppy
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posted
You need to explain what "can't tolerate" means. Frequently newer patients assume that if they feel worse after a med, this equals "intolerance." Then they give up on meds that might actually be working. Do you understand herxing?
I could be wrong here, but 4 of 5 doesn't sound like intolerance, it sounds like herxing. But I have no experience with that mutation and its consequences.
And again, my experience might be different from yours, but migraines can happen without having lyme, as mine did. And yours sound just like a migraine. Visual disturbances followed by headache = migraine, in my book.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Poppy - I DON'T usually get a headache with these episodes. I used to get migraines years ago but don't anymore, just the blindness. I know what herxing is. I believe I had allergic reactions to doxycycline and minocycline. I don't believe these were herxes.
It started out as a red itchy rash, then progressed to an inflamed, raised, bright purple-red rash all over my entire body and face. My skin started peeling off. My brain felt swollen and I started to hear my heart beat in my ears. My face swelled up. I could hardly turn my head. I don't believe this was a herx. I had the rash from my face all the way down to and including my feet.
I could not take diflucan or rifampin because it caused me to get stabbing pains in my liver for about 5 hours, then my liver hurt for 2 days. However, I have stopped the diflucan and re-started the rifampin and so far no stabbing. I don't know if that was a herx or not, but since both diflucan and rifampin are hard on the liver, I am not taking any chances.
It is very possible these blindness epsidodes are due to a migraine even though I don't get pain. If so, is there anything that will stop them anyway? I will try the mangosteen and ginger. I can try the bufferin too. I have given up caffeine.
Posts: 142 | From Midwest | Registered: Sep 2015
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posted
Oh, I appeared to be allergic to Nystatin too. Got a very itchy rash from it. This did not happen with the diflucan, so I think it was allergy, not candida die-off.
Posts: 142 | From Midwest | Registered: Sep 2015
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posted
Also, would migraines cause the flickering black vision every morning? Or would that likely be from something else?
Posts: 142 | From Midwest | Registered: Sep 2015
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poppy
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posted
OK, you made a very strong case. It ain't herxing!
Interesting that you dont get classic migraines anymore. When mine stopped, it seemed related to hormone change. I then got lyme/babesia headaches but they were not associated with eye symptoms. And I never had eye symptoms like you describe without having a headache following.
Pretty hard to figure out this stuff.
Sorry you went thru those awful med consequences.
Posts: 2888 | From USA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
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posted
TWO things we don't fool with here...
1.) Our heart, and
2.) Our eyes
Get to a neuro-eye doctor now!
Now that I've finished "ordering" you around, please know I am not crabby normally, just very concerned for your eye health.
LymeNet is not the place to get a diagnosis or help for your optic nerves and other parts of your eyes. This is something that can not wait.
I know- once our vision is damaged or gone we can't get it back!
Please let us know how you are doing AFTER you get to a good eye doctor!
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I get weird loss of peripheral vision then weird lighting like bright spots.i thought it was blood sugar thing seems less when i eat often..i wonder about retinal damage as snow h as been increasing at nite too..it happened more after some o3 treatments too?.i heard spirochettes love eyes because they are soft and have low blood flow. I have a little cyst in one eye...opthamologist and neuro both were of no help...i have been using eyedrops with eyebright seems to help . I am going to order some with bee venom in them..crazy right . Well 1beed, i feel for you and i didnt even try the ketoconzole my llmd gave... was doxy reaction sjs or might you have rickettsia flair? If we cant tolerate meds then what are we left with to treat
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Thank you all for your suggestions. I had never heard of a neurological opthamologist before. I see there are several in my area. I am going to get a referral to go see one.
Posts: 142 | From Midwest | Registered: Sep 2015
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posted
I don't know if the doxy reaction was sjs. I didn't go to the doctor about it because I was afraid they would give me steroids. My LLMD told me to stop the medication and it went away after a couple of weeks.
Poppy - I have a few symptoms that I don't get anymore like the drenching night sweats and the tachycardia (although I did have a radiocather ablation for that). The night sweats went away on their own long before I knew I had lyme. I was in my early 40s and don't believe it was hormonal. I have read that other people have symptoms that go away on their own.
My LLMD gave me antibiotic eye drops but they don't really help too much when I am having the disturbances. I have been seeing a lot of floaters since I started Ceftin. Ceftin is the only antibiotic I haven't had a problem with so far. Knock on wood.
Posts: 142 | From Midwest | Registered: Sep 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good for you! They are usually much more through than regular docs. Start out telling them you are coming in for Lyme related eye disorders and throw in bartonella too (just to make them think more about it).
That way they should read up on the conditions, hopefully, before you get there.
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